sheryl Posted March 16, 2011 Share Posted March 16, 2011 I'm tired of repeating my story. Just search threads on this board re my dd for background. She's so off the charts and walls with defiant behavior, dark side, moody, etc. She's even showing signs of lacking emotionally. She mishandled me and spouted off with the saying above. No rhyme nor reason. Her psychiatrist said that kids like her can go days/weeks with good days, then days/weeks with bad days. While I've not handled myself well in the past by pinning her to the floor to show her who's in control....I know now it didn't teach that. She lacks any submission to authority. Although her daddy and I have had to pin her down in the past to subdue her and it helped. She was smaller. She's almost 12 now and I tried to talk soothingly to her and she rejected.everything. I don't know what her problem is today. She hates math. I don't think there needs to be a problem necessarily. It's what the psych said...some days good, others not for no other reason than that. Well, that is h#ll on earth here. Her psychiatrist moved to another state. Now we are w/o one and my dd needs one. One who offers therapy/counseling. I'm at a loss. My dd said a few years ago she wished my dh was never born. Now this today. She keeps repeating these same "types" of statements I'm beginning to wonder. She told me years ago she wanted to cut me in pieces and put me in a garbage can...she was around 6 and she turns 12 this May. I'm so afraid at times b/c I don't know what she is capable of, but I don't let her know of my fear. :scared: How sad to be afraid of your child. :confused: Now, when she is sweet, she is the best. There is this side to her and I don't know what to make of it. How much is biological, how much is environmental, how much is spiritual (warfare here), how much.how much? Where does she get these "types" or ideas? Death, killing, etc. We do NOT watch, read, sing or do anything associated with the dark side. We are Christians who are imperfect and saved by the grace of God. Could it be all spiritual? Sorry for my rambling. I'm.just.in.tears. I really don't care to mother my child right now. In fact, on these days, I'd like to send her away to some kind of s.n. out of state program. I'm tired of feeling this way. And, the guilt. I feel so guilty for thinking/saying this here or anywhere, but it's the truth. How could this have happened? How did it get to this point? WHAT caused it to get to this point? So many questions and not enough answers. :crying::crying: Quote Link to comment Share on other sites More sharing options...
Mom0012 Posted March 16, 2011 Share Posted March 16, 2011 I'm so sorry you are going through such a terrible struggle. It sounds just awful. I have no advice, but I hope you are able to find the help you need for your daughter and yourself. :grouphug: Quote Link to comment Share on other sites More sharing options...
LittleIzumi Posted March 16, 2011 Share Posted March 16, 2011 :grouphug::grouphug::grouphug: She can pick up things anywhere, as far as ideas go. There's even plenty of violence in the Bible. Quote Link to comment Share on other sites More sharing options...
Dobela Posted March 16, 2011 Share Posted March 16, 2011 I'm so sorry you are going through such a terrible struggle. It sounds just awful. I have no advice, but I hope you are able to find the help you need for your daughter and yourself. :grouphug: :grouphug::grouphug: I don't have time to look up her past history tonight so forgive me if I miss something. Is she adopted by chance? Some of her behavior sounds like Reactive Attachment Disorder. Bipolar can also have some similar issues. Or some other type of brain injury, possibly at birth?? We have a friend whose son has never known anything other than a loving home and a Christian home yet he is much like your dd. He will rant, threaten to harm someone, focus on very hateful ugly things... He is a frightening child at times. The doctors are contributing some of it to brain injury at birth or in utero (it was a difficult birth). My mom has had a mini stroke and wow, it is like dealing with a very posessed person at times. Very ugly, very hateful, and so on. It wasn't this way before the stroke. I would seriously look into medications and heavy therapy. Ask the pediatrician for referrals if you need a new one. My friend above recently had to commit his son to a behavioral unit to get meds and behavior leveled out thru intensive therapy. It is absolutely one of the hardest things he has ever done he says. In the mean time:grouphug::grouphug::grouphug:. Quote Link to comment Share on other sites More sharing options...
sheryl Posted March 17, 2011 Author Share Posted March 17, 2011 A combined thanks to you 3 ladies! Yes, Dobela, she has had brain injury...she has controlled epilepsy. 2007 found her having multiple seizures almost daily (absence seizures) which started after her grand mal 3-15-07 while at Bible Study. Since 2-5-08 she has been seizure free...PTL! The doctors are expecting her to continue to do well and be weaned from meds. It all depends on how well her does when she starts her menses which by her signs will be this year or next. She's been on meds to control her epilepsy. As a side "issue" she was diagnosed with add, adhd and odd. She's on aderall generic w/salts for her add/adhd and we withdrew her odd med which was respirdal (sp?) b/c it was causing sleepiness in her ALL DAY...not able to function. I feel like we are missing something, but I don't know what. You know it's one thing for a kid to talk back, be moody once in a while, but "almost" daily and to the extreme she does. *** Dobela, what type of dr did your friend take his son to? What type of therapy? Quote Link to comment Share on other sites More sharing options...
PeterPan Posted March 17, 2011 Share Posted March 17, 2011 Did you ever follow up on your Nov. thread where people suggested you get a 2nd opinion and check into whether she's bi-polar? I don't know how to say this, but in your position I would be very scared. I know you're worried, but I mean scared. I don't know what facilities there are in Ohio, but you might think about finding her someplace safe, safe for the both of you. I know when we dealt with this in another state, there were private facilities. You might check your options. You also mentioned recently you were adjusting down meds due to them causing aggression. Where is that. Maybe you plateaued and need to look at that again? Quote Link to comment Share on other sites More sharing options...
PrincessAriel Posted March 17, 2011 Share Posted March 17, 2011 :grouphug::grouphug: I am so sorry you are going through this with your dd. I wish I had advice to give you. You have gotten some thoughtful replies. I will keep you in my prayers! Quote Link to comment Share on other sites More sharing options...
Dobela Posted March 17, 2011 Share Posted March 17, 2011 *** Dobela, what type of dr did your friend take his son to? What type of therapy? He went to a specialist psychiatrist at a Children's Hospital in our state. His son is at a behavioral unit at a hospital now, kind of like a psych ward for kids. It has been an awful experience getting there, complete with violent rages at home and in public places, including his special ed public school classroom and church. And getting the help needed was a long road. OT helped some with the sensory issues that would contribute to episodes, but not enough to stand alone. Talk type therapies helped a little, but not as much as they could have since the brain damage left his son with not much empathy. They had to pretty much show that they had exhausted all other therapies and interventions before the psychiatrist would see him. Now the dad goes to visit him and attend regular therapy sessions with him and alone as they work to him coming home. Sadly the mom has left the picture now. I know the risperdal didn't work, but you may want to consider some other similar type drug. There are many options out there. I know we had sisters once in foster care that needed the mood stabilizing drugs. One responded very, very well to risperdal. The other one didn't, but now I can't remember what she took other than a combination of ritalin and whatever the other drug was. I might also look more closely at the adderall as well. In some children adderall has serious aggression as a side effect. At your dd's age it may be difficult finding the right combination as she enters hormone nightmare because her body is rapidly changing. It may be that the meds may need adjusting on a more regular basis. I have a brother with high functioning autism on mood stabilizers and even at nearly 40 years old they have to be adjusted occassionally. :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
asta Posted March 17, 2011 Share Posted March 17, 2011 I'm not a doctor. I'm a wonk. I may have figured something out but I need to know: When you say "brain injury", what do you mean? Which lobe? Does scarring show on the MRI? What does her "basic neurological exam" look like? (just click the links) On what side of her brain is her seizure focus? a Quote Link to comment Share on other sites More sharing options...
ReneeK Posted March 17, 2011 Share Posted March 17, 2011 :grouphug::grouphug::grouphug: Just can pray for answers and wisdom. Quote Link to comment Share on other sites More sharing options...
sheryl Posted March 17, 2011 Author Share Posted March 17, 2011 To all of you....moms who pm'd me and those that replied to my post. I will take to heart what you all shared and I'm grateful for those of you who pm'd me with advice, etc....you know who you are! Asta, thanks for coming back. She didn't have brain injury as a result of an accident. She has controlled epilepsy and her neurol has said that when she was having seizures it was like "burning" her pathways or something like that. He went on to state that "behavior" shares the same brain pathways and that's why many times epilepsy runs hand in hand with "behavior issues". We've been giving her 2 generic aderall at 12.5 dose for a total of 25 mg/day in the am. When my dh arrived home last night I burst out in tears and told him I can't do this anymore....she needs help. He agreed to sending her back to a psychologist. I'm all for that, but (and my pm friend, give me you input on this) will that "set her up" in her mind that she's a failure and needs counseling/therapy and she'll "play the part" OR act according to what she is labeled and get worse? My dh and I then agreed to give her 1 more lamictal. Long story short....she's been holding steady taking generic lamotrigine at 25 mg. dose....6/am and 4/pm. Well, it's a med used for many things...it's a clean med (not through liver). She was at 5/am and 5/pm and I switched it to 6/am and 4/pm. Why you ask? Well, it can be used to treat behavior issues and is a stimulant. She wasn't sleeping well a year or so ago and after much talking and support from her nurse I switched from 5/5 to 6/4. The one less at night resulted in less stimulant at night and she could sleep better. But, she still needed 10 a day so I added that "1" to the am schedule. It worked well, until....now. She's older, bigger, taller. So, my dh and I last night agreed to give her 1 more this am. So, this am she took 7 and tonight will take 4. Since add/adhd meds are stimulants, I gave her 1 adderall instead of 2. She's MUCH BETTER TODAY. She went to bed 30 min earlier last night....she NEEDS her sleep. And, she's drinking a little homemade hot chocolate as that helps with add, adhd. So, this will work for a while and then down the road there may be another "kink" to work out....if history is any indication. This always happens. WHY???? I told my dh this last night. It's like the meds work every 6 months and it has to be tweaked. Asta, you told me this 1-2 years ago and it's so true. Lastly, these meds carry so many symptoms. Too little dose and too much can produce the same unwanted results: hostility, anger, etc. What good are they then? You moms who responded with prayer.....what a blessing. THANKS from the bottom of my heart. Quote Link to comment Share on other sites More sharing options...
asta Posted March 17, 2011 Share Posted March 17, 2011 I'm not a doctor. I'm a wonk. I still think I figured it out. But read through the whole post anyway. BTW: the "pathway" thing your neuro mentioned is a thing called "kindling". When a person has a seizure, it kind of "burns" a pathway along the synapses in their brain. If the initial seizure is large enough, a kind of "trough" is produced, and then, if treatment is not initialized, every little "spark" of seizure or seizure-like activity will "kindle" a fire of sorts along that pathway. And, unfortunately, just as fires move through kindling along the forest floor, seizures can move along synapses in the same manner, burning them out along the way. I'm tired of repeating my story. Just search threads on this board re my dd for background. She's so off the charts and walls with defiant behavior, dark side, moody, etc. She's even showing signs of lacking emotionally. She mishandled me and spouted off with the saying above. No rhyme nor reason. Her psychiatrist said that kids like her can go days/weeks with good days, then days/weeks with bad days. Good Pdoc. Bummer to lose him. Did he give a diagnosis? It doesn't sound like ODD to me. It sounds more solidly Axis I. While I've not handled myself well in the past by pinning her to the floor to show her who's in control....I know now it didn't teach that. She lacks any submission to authority. Although her daddy and I have had to pin her down in the past to subdue her and it helped. She was smaller. She's almost 12 now and I tried to talk soothingly to her and she rejected.everything. You're not the first person who has done this, and you won't be the last. And if you think about it, I doubt she lacks any submission to authority. How is she during her "good" times? I don't know what her problem is today. She hates math. I don't think there needs to be a problem necessarily. It's what the psych said...some days good, others not for no other reason than that. He would be correct. And math doesn't matter. Not in the great scheme of things, anyway. When she is well, she will be able to follow the logical trains of thought that math requires, but not now. Think of it like a poorly maintained road: it's there, you can drive on it, but there are so many cracks, fissures, and holes that the car is jostled all over the place. It is all you can do to keep the car on the road, much less hold a conversation or sing along with the radio. No math. Well, that is h#ll on earth here. Her psychiatrist moved to another state. Now we are w/o one and my dd needs one. One who offers therapy/counseling. As much as it makes me cringe to say this, as I don't agree with their politics, call NAMI. They should be able to assist you in finding resources in your state. I'm at a loss. My dd said a few years ago she wished my dh was never born. Now this today. She keeps repeating these same "types" of statements I'm beginning to wonder. She told me years ago she wanted to cut me in pieces and put me in a garbage can...she was around 6 and she turns 12 this May. I'm so afraid at times b/c I don't know what she is capable of, but I don't let her know of my fear. :scared: Has anyone ever told you the 'thing' about how, if you're pointing a finger at someone else, you're pointing three fingers back at yourself? She isn't saying she wishes your husband wasn't born, she is saying she wishes she wasn't born. Not that she wants to cut you up and throw you away, but that she sees herself as a piece of trash that should be irreparably discarded. Neither of those statements are homicidal in nature: they are suicidal. And they are not your dear child talking, they sound like depression talking. Depression speaks very loudly to a person. I'm not talking about voices in their head (schizophrenia), or different personalities running around and bumping into one another (multiple personality disorder, like Sybil). Depression is like a fog that slowly curls in from the sea, wrapping around the "ankles" of one's brain, and then rising up until you can no longer see the world around you as it truly is. You don't even realize it is happening until you are suddenly blind and confused. And angry that you are lost. After a while, the anger becomes practically permanent, as "lost" becomes your new "normal". Every once in a while, a breeze comes by and clears a path for you to see - and you are so happy! It is as if a burden has been lifted that you had forgotten was even there, having been lost amongst it for so long. How sad to be afraid of your child. :confused: I wouldn't say that you're afraid, I would say that you're tired. And wary. Now, when she is sweet, she is the best. There is this side to her and I don't know what to make of it. How much is biological, how much is environmental, how much is spiritual (warfare here), how much.how much? Pretty much all of it is biological at this age, barring extreme abuse (which it does not sound as if she has suffered - I have not read your other post). The brain is a really, really big place, about which we know practically nothing. Ever hear the child's nursery rhyme "There once was a girl, with a tiny little curl, right in the middle of her forehead. When she was good, she was very, very good. But when she was bad, she was horrid."? All nursery rhymes come from somewhere: what is happening to your daughter (unfortunately) is not new in the span of existence. It is simply more "apparent" because society has become more rarefied, less willing to tolerate aberration from the "norm", gives fewer outlets for people to express anger and rage (think of how people lived in the middle ages and right through the second world war...), and finally, people who really can't balance the anger and the functional simply weren't allowed out into society. They were either institutionalized or killed (sorry for the imagery there). Where does she get these "types" or ideas? Death, killing, etc. We do NOT watch, read, sing or do anything associated with the dark side. Her head. Yes, it is that simple. Not "violent imagery", not "external influences". Humans are born to survive as a species. To do so, they must "best" or "conquer" what they view/consider to be "in their way" to achieving their "goals", their inborn need to dominate their pack, their surroundings. We, as "civilized society", would like to think we have "overcome all of that" nastiness (kill or be killed, for lack of better terminology), but honestly? Nope. It is there, right under the facade we show to one another. It is why a mother will do anything to protect her child; it is inborn rage, so to speak. We are Christians who are imperfect and saved by the grace of God. Could it be all spiritual? No. I cannot stress that enough. Don't even go down that road. Don't allow others to draw you down that road. As she grows and develops, finding her place in her spirituality may/will help her to center her "self" (as in, her sense of "place" in the world) but spiritual, in the sense that you are using it, is not the "cause" here. [continued on the next post] Quote Link to comment Share on other sites More sharing options...
asta Posted March 17, 2011 Share Posted March 17, 2011 Sorry for my rambling. I'm.just.in.tears. I really don't care to mother my child right now. In fact, on these days, I'd like to send her away to some kind of s.n. out of state program. Before you do that, may I suggest something? Or a couple of somethings? Firstly, take 24 hours and go to a hotel. Have dad take over, and just go spend the night somewhere else. If needed, take a tub and then drink a glass of wine and just go splat on the bed and sleep. As Robert Ludlum writes: "Sleep is your greatest weapon". Against everything. Second, after getting ahold of NAMI, and getting a Pdoc (your county health department or local children's hospital may help with this as well), look into a couple different medication alternatives. Quite often, children who flit from thing to thing are treated with ADD meds, which only exacerbate their rage issues. Anti-psychotics such as Risperdal are generally excellent for rage (and are approved for pediatric use), and are widely prescribed due to their immediate onset. However, they aren't always the best mode of action for mood stabilization. Additionally, they are very specific in how they work (as you have discovered). In further proof that children are NOT little adults, Risperdal almost never makes adults sleepy all day. Sure, it is usually dosed at night, but the majority of people wake up refreshed. Another AAP, Abilify, is an odd little drug: IME (anecdata), fully half of the people taking it will go "down" (eg: calm down) on the drug and the other half will go "up" (eg: get manic symptoms). This is in adults, mind you, but it does show how individually people react to medications, and how one cannot simply "write off" a drug due to what someone else has experienced. Finally, many of the "old" drugs (typical, rather than atypical anti-psychotics) are coming back into use in small doses as doctors are realizing that, not only are the safety profiles between the AAPs and the APs really not that different (now that the AAPs have been on the market long enough to tell), the APs quite often simply work better. One of the things neurologists discovered when researching epilepsy medications was that they worked extremely well for the mood ups and downs of seizure patients. Hence, almost all the "big" anti-epileptics are now approved for use as mood stabilizers; even for pediatrics. In the rage department, scientists have discovered that a drug called Topamax is very effective, due in part to the fact it "targets" the temporal lobes, which are where most of the mood issues arise. A caveat to its use, however, is that patients whose issues tend to reside elsewhere (say, a person whose seizure focus is frontal) may not find any success with the drug. Lamictal can be excellent at both lifting depression and lengthening the time between mood episodes. However, it is *not* a "stimulant". It is simply an AED, just as Zarontin is an AED (although their mechanisms are very different). Most people will have a "stimulant-like" effect from Lamictal when they first start the drug (coincidentally, when they are right around 100-200 mg, though I would think that threshold would be much lower for pediatrics...), but that disappears as the dose increases and the stabilization properties come into play. So, what is my point here? Once you make a trough, it is there. It doesn't matter whether or not an EEG is registering active seizures any longer; the line has been drawn, and the damage, so to speak, is done. While a person may not be having any seizures strong enough to register on a surface lead of an EEG, they may be still having ones that are not registering. Treatment, at that point, becomes very tricky because many drugs such as AAPs (Risperdal, Abilify) and stimulants (Ritalin, Concerta, etc.) can exacerbate seizure activity. (not will, but can) Finally, there is a thing called Forced Normalization that (personally) I think all people dealing with neuro cooties need to know about. In summary, your brain is accustomed to moving along certain pathways. Seizures, mood disorders, all sorts of things "bump" your normal brain rhythm off of those paths. When your brain has been bumped into one of those "troughs" for awhile, it gets used to it, and the inertia involved makes it want to stay there. When a medication is introduced to "bump it back where it should be", things don't always go swimmingly. IOW, "forcing normalization" onto the brain, via medications, neural stimulators - whatever - can lead to... Rages. Mood problems. Issues. When you've had a serious event that has more or less permanently knocked you off of "normal", and you are left picking up the metaphorical pieces via therapy, medications, etc., you are constantly forcing normalization onto your brain. Sometimes it works, sometimes it doesn't. Hence the good days and the bad. And weaning off of the AEDs usually only makes things worse. I'm tired of feeling this way. And, the guilt. I feel so guilty for thinking/saying this here or anywhere, but it's the truth. How could this have happened? How did it get to this point? WHAT caused it to get to this point? So many questions and not enough answers. :crying::crying: It got that way because it did. My own neuro had to tell me I had idiopathic seizures for years before the true definition of the word idiopathic would sink into my brain. I know this is of little solace to you, but the fact that your daughter has been on AEDs all of this time will save her in the long run. AEDs promote neurogenesis. (growth of new neurons and the prevention of death of others) I have been on them since my brain "blew up" in 2000. I am in much better shape neurologically than one of my siblings who also has a neurological problem, but whose doctors took an entirely different approach. Yes, we have different diagnoses, but I can't help but wonder if I would have the "worse" one if I hadn't been treated non-stop with AEDs. Forced normalization. Lamictal. Ask about Topamax. Stims don't sound like such a great idea. Going off of the AEDs sounds like a horrible idea. Hope that helps. asta Quote Link to comment Share on other sites More sharing options...
Ottakee Posted March 17, 2011 Share Posted March 17, 2011 Just got back from a long 36 hours doing EEGs, PET scans and DTI MRI with the girls but wanted to comment. Is there a seasonal component to this? March is well known for increasing mania/irritabity/hypo-mania/cycling if there is bipolar or other mood disorders. I would be calling the psychiatrist ASAP and letting them know before things get too far out of hand. Quote Link to comment Share on other sites More sharing options...
sheryl Posted March 18, 2011 Author Share Posted March 18, 2011 Just got back from a long 36 hours doing EEGs, PET scans and DTI MRI with the girls but wanted to comment. Is there a seasonal component to this? March is well known for increasing mania/irritabity/hypo-mania/cycling if there is bipolar or other mood disorders. I would be calling the psychiatrist ASAP and letting them know before things get too far out of hand. Hi Ottakee, I wish it were as simple as "sad" but this is any time through the year. Hope your trip to DW was special! Quote Link to comment Share on other sites More sharing options...
sheryl Posted March 18, 2011 Author Share Posted March 18, 2011 I've had many responses via the thread and pm.....I'm trying to respond to all....it's just taking time...so check back here or your pm. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted March 18, 2011 Share Posted March 18, 2011 Hi Ottakee, I wish it were as simple as "sad" but this is any time through the year. Hope your trip to DW was special! I was not thinking something as "somple" as SAD but rather bipolar that is worsening due to med changes combined with the change in seasons. There just seems to be a seasonal component/cycling here as she seems to do better some times and then worse others. Does she have her cycle yet? Any correlation to that? No matter what, if things are getting worse, I would be calling in the psychiatrist and neurologist and working on a game plan. Quote Link to comment Share on other sites More sharing options...
AnitaMcC Posted March 18, 2011 Share Posted March 18, 2011 (edited) She's been on meds to control her epilepsy. As a side "issue" she was diagnosed with add, adhd and odd. She's on aderall generic w/salts for her add/adhd and we withdrew her odd med which was respirdal (sp?) b/c it was causing sleepiness in her ALL DAY...not able to function. I would get her off the adderall and see if that helps!! In my nephew (we got guardianship when he just turned 9) dx ADHD/ODD/Intermittent rage disorder... the adderall made it all worse!!! He was so horrible that we had to hospitalize him twice (May of 5th grade, Dec of 6th grade). He was threatening to hurt people (one was a 5 yr old girl... he threatened to throw her in front of a moving car and this was after he already shoved another little kid face into sand). Found out later that adderall often has a side effect on kids who are oppositional defiant disorder, conduct disorder, bipolar, reactive attachment disorder, etc. A very common side effect is an increase anger and rage. I was told by his new psych that the adderall was one of the last med he would give with nephew's rage issues. The med combo that finally made an improvement with nephew was concerta and (ugh.. brain fry.... I can't remember what it was). He was on the meds from 6th grade through 9th and then he refused meds. He is 21 now and still off meds and is doing well overall. He is lazy and unmotivated but he his attitude and behavior is much calmer and he is finding his path (he is joining the Navy). Anyway.. I would really question adderall in a patient with rage issues and what you are describing is rage from what I have experienced with nephew. I hope you find a new doctor soon!!!!!!!!!!!!!!! Edited March 18, 2011 by AnitaMcC Quote Link to comment Share on other sites More sharing options...
asta Posted March 18, 2011 Share Posted March 18, 2011 I forgot something (very stressed and tired around here lately...): When you have seizures, you get a comorbid mood disorder. It is just the way it is. Some doctors go so far as to label it full-on bipolar, others label it the more socially acceptable "mood disorder due to general medical condition: epilepsy". Practically anything that messes with a person's neurons on a regular basis screws up their mood: seizures, ALS, MS, tuberous sclerosis, pick almost any diagnosis your average neurologist deals with! The difficulty comes in when Pdocs and Neuros aren't talking to one another. Even though many of the meds they use are the same (AEDs, benzos, for example), some drugs fall into the "oh, heck no" category by neuros and vice versa by Pdocs. Both docs mean well, but sometimes they end up working against the "greater good" trying to ameliorate all of the symptoms going on. My neuro won't allow me to have ANY stims or antidepressants. None. Many neuros will allow their patients to have small doses because their depressions are so deep. Why can't *I* have them? Because he's from that school of thought. And, frankly, they exacerbate my seizures in a heartbeat. I never knew they were doing it (I just knew things were out of control) until he pulled me from them. I went kicking and screaming (I'll never get laundry done again w/o my ADD meds!). And yeah, my focus isn't as good. I have to force myself to do laundry. I'm having to write many more lists and learn more coping skills. But I'm also only having seizures at ovulation and menses now (instead of near daily), so I can actually do more, overall... Just my .02 a Quote Link to comment Share on other sites More sharing options...
sheryl Posted March 20, 2011 Author Share Posted March 20, 2011 Asta, as I'm typing this I see your responses to mine and not my quotes you are referring to, so I'm not thoroughly answering well based on that. I'm not a doctor. I'm a wonk. I still think I figured it out. But read through the whole post anyway. BTW: the "pathway" thing your neuro mentioned is a thing called "kindling". When a person has a seizure, it kind of "burns" a pathway along the synapses in their brain. If the initial seizure is large enough, a kind of "trough" is produced, and then, if treatment is not initialized, every little "spark" of seizure or seizure-like activity will "kindle" a fire of sorts along that pathway. And, unfortunately, just as fires move through kindling along the forest floor, seizures can move along synapses in the same manner, burning them out along the way. Good Pdoc. Bummer to lose him. Did he give a diagnosis? It doesn't sound like ODD to me. It sounds more solidly Axis I. The psychiatrist said: add, adhd and odd. That was last year, I think. THe year before, as she was turning 10, she was eval'd by a neuropsychologist....2 sessions spaced about a week apart. 1 before her b'day and the 2nd session after her 10th b'day. This is where it gets tricky and it's really too loooong to go fully into it, but I still don't understand his assessment to this day. It was so overwhelming and I did not absorb it...now I'm embarassed, etc. I called him back for a f//u appt for him to explain in detail and we were denied. :confused: You're not the first person who has done this, and you won't be the last. And if you think about it, I doubt she lacks any submission to authority. How is she during her "good" times? She does not obey well, nor submit well. To me they really do go hand in hand, or should. He would be correct. And math doesn't matter. Not in the great scheme of things, anyway. When she is well, she will be able to follow the logical trains of thought that math requires, but not now. Think of it like a poorly maintained road: it's there, you can drive on it, but there are so many cracks, fissures, and holes that the car is jostled all over the place. It is all you can do to keep the car on the road, much less hold a conversation or sing along with the radio. No math. As much as it makes me cringe to say this, as I don't agree with their politics, call NAMI. They should be able to assist you in finding resources in your state. What is NAMI and why are they important? Has anyone ever told you the 'thing' about how, if you're pointing a finger at someone else, you're pointing three fingers back at yourself? She isn't saying she wishes your husband wasn't born, she is saying she wishes she wasn't born. Not that she wants to cut you up and throw you away, but that she sees herself as a piece of trash that should be irreparably discarded. Yes, lightbulb here. I do understand this subtle perception, but did not even consider it here. I would say this is correct as I hear her say often that she's the worst kid in the world. Neither of those statements are homicidal in nature: they are suicidal. And they are not your dear child talking, they sound like depression talking. Depression speaks very loudly to a person. I'm not talking about voices in their head (schizophrenia), or different personalities running around and bumping into one another (multiple personality disorder, like Sybil). Depression is like a fog that slowly curls in from the sea, wrapping around the "ankles" of one's brain, and then rising up until you can no longer see the world around you as it truly is. You don't even realize it is happening until you are suddenly blind and confused. And angry that you are lost. After a while, the anger becomes practically permanent, as "lost" becomes your new "normal". So she needs an anti-depressant? Every once in a while, a breeze comes by and clears a path for you to see - and you are so happy! It is as if a burden has been lifted that you had forgotten was even there, having been lost amongst it for so long. I wouldn't say that you're afraid, I would say that you're tired. And wary. Oh gosh, make no mistake about this. I'm tired, I'm weary and I'M.SCARED when she's in one of her episodes. Why? B/C I don't know what she is capable of doing. Pretty much all of it is biological at this age, barring extreme abuse (which it does not sound as if she has suffered - I have not read your other post). The brain is a really, really big place, about which we know practically nothing. Ever hear the child's nursery rhyme "There once was a girl, with a tiny little curl, right in the middle of her forehead. When she was good, she was very, very good. But when she was bad, she was horrid."? All nursery rhymes come from somewhere: what is happening to your daughter (unfortunately) is not new in the span of existence. It is simply more "apparent" because society has become more rarefied, less willing to tolerate aberration from the "norm", gives fewer outlets for people to express anger and rage (think of how people lived in the middle ages and right through the second world war...), and finally, people who really can't balance the anger and the functional simply weren't allowed out into society. They were either institutionalized or killed (sorry for the imagery there). Her head. Yes, it is that simple. Not "violent imagery", not "external influences". Humans are born to survive as a species. To do so, they must "best" or "conquer" what they view/consider to be "in their way" to achieving their "goals", their inborn need to dominate their pack, their surroundings. We, as "civilized society", would like to think we have "overcome all of that" nastiness (kill or be killed, for lack of better terminology), but honestly? Nope. It is there, right under the facade we show to one another. It is why a mother will do anything to protect her child; it is inborn rage, so to speak. No. I cannot stress that enough. Don't even go down that road. Don't allow others to draw you down that road. As she grows and develops, finding her place in her spirituality may/will help her to center her "self" (as in, her sense of "place" in the world) but spiritual, in the sense that you are using it, is not the "cause" here. [continued on the next post] Quote Link to comment Share on other sites More sharing options...
sheryl Posted March 20, 2011 Author Share Posted March 20, 2011 Asta, You are awesome. Honestly you are so knowledgable that I have to read and reread your posts! I'm glad you are doing better, Asta. Type and frequency? Before you do that, may I suggest something? Or a couple of somethings? Firstly, take 24 hours and go to a hotel. Have dad take over, and just go spend the night somewhere else. If needed, take a tub and then drink a glass of wine and just go splat on the bed and sleep. As Robert Ludlum writes: "Sleep is your greatest weapon". Against everything. Yes, I do desperately need a moms weekend getaway. Second, after getting ahold of NAMI, and getting a Pdoc (your county health department or local children's hospital may help with this as well), look into a couple different medication alternatives. Quite often, children who flit from thing to thing are treated with ADD meds, which only exacerbate their rage issues. Anti-psychotics such as Risperdal are generally excellent for rage (and are approved for pediatric use), and are widely prescribed due to their immediate onset. However, they aren't always the best mode of action for mood stabilization. Additionally, they are very specific in how they work (as you have discovered). In further proof that children are NOT little adults, Risperdal almost never makes adults sleepy all day. Sure, it is usually dosed at night, but the majority of people wake up refreshed. DD was on risperdal for maybe a year...long enough to know that she yawned the next day and b/c she was loopy not functioning. The dr didn't say she was psychotic though. It was prescribed to be a "downer" to coincide after coming down from the upper/stimulant adderall. When adderall wears off there can be problems again, so enter risperdal and it "smoothes" things out until they go to bed. Whew, it's like jumping through hoops. Another AAP, Abilify, is an odd little drug: IME (anecdata), fully half of the people taking it will go "down" (eg: calm down) on the drug and the other half will go "up" (eg: get manic symptoms). This is in adults, mind you, but it does show how individually people react to medications, and how one cannot simply "write off" a drug due to what someone else has experienced. Finally, many of the "old" drugs (typical, rather than atypical anti-psychotics) are coming back into use in small doses as doctors are realizing that, not only are the safety profiles between the AAPs and the APs really not that different (now that the AAPs have been on the market long enough to tell), the APs quite often simply work better. Asta, aap and ap........explain? One of the things neurologists discovered when researching epilepsy medications was that they worked extremely well for the mood ups and downs of seizure patients. Hence, almost all the "big" anti-epileptics are now approved for use as mood stabilizers; even for pediatrics. In the rage department, scientists have discovered that a drug called Topamax is very effective, due in part to the fact it "targets" the temporal lobes, which are where most of the mood issues arise. YES, I've heard elsewhere that Topamax works wonders. A caveat to its use, however, is that patients whose issues tend to reside elsewhere (say, a person whose seizure focus is frontal) may not find any success with the drug. Lamictal can be excellent at both lifting depression and lengthening the time between mood episodes. However, it is *not* a "stimulant". It is simply an AED, just as Zarontin is an AED (although their mechanisms are very different). Most people will have a "stimulant-like" yes, lamictal has a stimulant-like effect...correct according to literature. effect from Lamictal when they first start the drug (coincidentally, when they are right around 100-200 mg, though I would think that threshold would be much lower for pediatrics...), but that disappears as the dose increases and the stabilization properties come into play. So, what is my point here? Once you make a trough, it is there. It doesn't matter whether or not an EEG is registering active seizures any longer; the line has been drawn, and the damage, so to speak, is done. While a person may not be having any seizures strong enough to register on a surface lead of an EEG, they may be still having ones that are not registering. Treatment, at that point, becomes very tricky because many drugs such as AAPs (Risperdal, Abilify) and stimulants (Ritalin, Concerta, etc.) can exacerbate seizure activity. (not will, but can) Finally, there is a thing called Forced Normalization that (personally) I think all people dealing with neuro cooties need to know about. In summary, your brain is accustomed to moving along certain pathways. Seizures, mood disorders, all sorts of things "bump" your normal brain rhythm off of those paths. When your brain has been bumped into one of those "troughs" for awhile, it gets used to it, and the inertia involved makes it want to stay there. When a medication is introduced to "bump it back where it should be", things don't always go swimmingly. IOW, "forcing normalization" onto the brain, via medications, neural stimulators - whatever - can lead to... Rages. Mood problems. Issues. When you've had a serious event that has more or less permanently knocked you off of "normal", and you are left picking up the metaphorical pieces via therapy, medications, etc., you are constantly forcing normalization onto your brain. Sometimes it works, sometimes it doesn't. Hence the good days and the bad. And weaning off of the AEDs usually only makes things worse. It got that way because it did. My own neuro had to tell me I had idiopathic seizures for years before the true definition of the word idiopathic would sink into my brain. I know this is of little solace to you, but the fact that your daughter has been on AEDs all of this time will save her in the long run. AEDs promote neurogenesis. (growth of new neurons and the prevention of death of others) I have been on them since my brain "blew up" in 2000. I am in much better shape neurologically than one of my siblings who also has a neurological problem, but whose doctors took an entirely different approach. Yes, we have different diagnoses, but I can't help but wonder if I would have the "worse" one if I hadn't been treated non-stop with AEDs. Forced normalization. Lamictal. Ask about Topamax. Stims don't sound like such a great idea. Going off of the AEDs sounds like a horrible idea. Now she is on lamictal. She was introduced to lamictal July/August 2007 and zarontin Jan 2008...within 4 weeks she became seizure free and has been for 3 years! I feel very uncomfortable though changing her n. meds b/c she has had such great success with them and the dr is planning on weaning her after her period starts and assuming all goes well. I have heard good info about Topamax but afraid to switch her. I spoke with her nurse and she reminded me along with you and others that stims cause agression, so I just don't know what to do. Have you heard of Intuviv? spelling???? Hope that helps. asta Quote Link to comment Share on other sites More sharing options...
sheryl Posted March 20, 2011 Author Share Posted March 20, 2011 Thanks everyone for your pm's and replies to my thread and your prayers. It is all appreciated very much!! :grouphug: Quote Link to comment Share on other sites More sharing options...
sheryl Posted March 21, 2011 Author Share Posted March 21, 2011 FWIW, I liked the idea to not give her adderall. We did not give her adderall today and it was a living H#LL today! I see no difference so what does that mean? She's been very mouthy (worst parents in the world and other strange behavior), disrespectful, vengeful, disobedient, incredibly not focused, etc. Getting ready for church was "ok", but it as every hour passed this afternoon, it became worse and worse. She can not continue like this and function. Quote Link to comment Share on other sites More sharing options...
asta Posted March 21, 2011 Share Posted March 21, 2011 (edited) Sheryl AAP -- atypical antipsychotic AP -- antipsychotic both are used for many more things than psychosis If she was decompensating w/o the Adderall, I would guess that something besides ADD is going on. Lack of a stimulant should lead to squirrelly behavior, not what you just wrote. NAMI. National Alliance for the Mentally Ill. She doesn't necessarily need an anti-depressant (AD). For a person who has had seizures, they can sometimes make things go wonky. Some folk can tolerate them, some can't. Lamictal has AD qualities. Topamax has AD qualities. Abilify can have AD qualities. I really think you need to have a heart to heart with her neurologist, especially since you don't have a Pdoc to talk to, about NOT taking her off of her Lamictal, but rather looking into RAISING it in line with her growth for psych purposes. Then, if she doesn't stabilize, you can have the discussion about withdrawing the Zarontin instead and replacing it with something else (like Topamax). Since they are both neuro drugs, the neuro should be amenable to helping you. I'm right in the middle of moving house, but I'll check in periodically. a Edited March 21, 2011 by asta Quote Link to comment Share on other sites More sharing options...
sheryl Posted March 22, 2011 Author Share Posted March 22, 2011 Sheryl AAP -- atypical antipsychotic AP -- antipsychotic both are used for many more things than psychosis If she was decompensating w/o the Adderall, I would guess that something besides ADD is going on. Lack of a stimulant should lead to squirrelly behavior, not what you just wrote. Decompensating - how? I understand compensating, but decompensating I'm trying to figure this out in relation to our issue. HELP! NAMI. National Alliance for the Mentally Ill. Oh, got it. It's hard for me (and pardon the pun here) to wrap my brain around the diagnoses of add, adhd as mental illness. WOW! She doesn't necessarily need an anti-depressant (AD). For a person who has had seizures, they can sometimes make things go wonky. Some folk can tolerate them, some can't. Lamictal has AD qualities. Topamax has AD qualities. Abilify can have AD qualities. Vitamin B/family, vit D and fish oil are over all good for her. B's would help with her mood issues. Exercise is important, etc. I really think you need to have a heart to heart with her neurologist, especially since you don't have a Pdoc to talk to, about NOT taking her off of her Lamictal, but rather looking into RAISING it in line with her growth for psych purposes. This is what my dh and I just started on a trial basis. I'm giving her 1 extra pill in the am. Good point, A, she may need even another one in the am for psych purposes. Then, if she doesn't stabilize, you can have the discussion about withdrawing the Zarontin instead and replacing it with something else (like Topamax). My dh is adamant (being the closet neurologists that we are as described by dd's neurlogist himself) that dd is getting TOO MUCH zarontin. She has been successful with zarontin for over 3 years and in fact, she became seizure free approx 1 month after started z. We will likely not switch, but lowering the dose would seem to be in order here. HOWEVER, IF at her next eeg there are signs of spiking or bursts over threshold then we should consider another med. She's been seizure free as I've said, but the n is waiting for dd to start her cycle to "turn off the switch" as he puts it. Periods usually either make the seizure activity to completely stop or resume. Since they are both neuro drugs, the neuro should be amenable to helping you. I'm right in the middle of moving house, but I'll check in periodically. Happy house moving, we're fixing up our fixer upper to move! LOL! a PS....As you know, symptoms of too little or too much of a med can parrot one another. Too little and activity isn't controlled....may be behavior issues. And, too much also results in SAME symptoms. It's hard knowing exactly what to do. STILL, I'm ready to pull my hair out and then some. TTYS! Quote Link to comment Share on other sites More sharing options...
asta Posted March 26, 2011 Share Posted March 26, 2011 DD was on risperdal for maybe a year...long enough to know that she yawned the next day and b/c she was loopy not functioning. The dr didn't say she was psychotic though. It was prescribed to be a "downer" to coincide after coming down from the upper/stimulant adderall. When adderall wears off there can be problems again, so enter risperdal and it "smoothes" things out until they go to bed. Whew, it's like jumping through hoops. BTW: I hate this kind of prescribing. "Well, we're giving the patient a drug that makes them too ____ , so we're going to give them ANOTHER drug to counteract that particular effect". Um... how about just changing the first drug? ARRRGGGG Now she is on lamictal. She was introduced to lamictal July/August 2007 and zarontin Jan 2008...within 4 weeks she became seizure free and has been for 3 years! I feel very uncomfortable though changing her n. meds b/c she has had such great success with them and the dr is planning on weaning her after her period starts and assuming all goes well. I have heard good info about Topamax but afraid to switch her. I spoke with her nurse and she reminded me along with you and others that stims cause agression, so I just don't know what to do. Have you heard of Intuviv? spelling???? She may remain seizure free when she starts menses, she may not. Menses either makes everything better or everything worse, as progesterone is protective against seizures and estrogen makes them worse. This is how so many epileptics end up on progesterone-only pills. And have sucky menopauses. Intuniv (guanfacine): First attached file up is the side effect profile. Not too bad considering it is marketed as an ADHD drug. It is an Alpha2A-adrenoceptor agonist, not a stim, so it works COMPLETELY differently in the brain. Scientists think that stimulating Alpha 2a "increases delay-related firing of prefrontal cortex neurons, a cellular measure of underlying working memory and behavioral inhibition" (so you can see where that should help a person). The problem I see is that the only placebo controlled, double blind study done on the drug was done by the scientists from the company who make it (Shire). Yes, it is common in the pharmaceutical world for everyone to have worked with everyone else at some point or another, but this is the study that all of the other studies have based themselves off of. I'm not saying that the data is wrong - but it is obviously written to make the drug look as attractive as possible. An example of this is the second attached file, the graph showing doses vs placebo over time. They mention that the participants started receiving their randomized doses at week 4 of the study. OK, fine - this is also common - the patients had to washout other drugs and taper up on this one. The graph only shows weeks 0-6. So we get to see how the drug works for a whopping 3 whole weeks. After that, all we see is that they tapered the patients off of it. For what it shows, it makes the drug look great, even with an "endpoint" that is slightly higher. The problem with this is what is elsewhere in the study: the people who dropped out, and the people who wanted to stay on it. They started with 324 patients, they ended with 211. That doesn't look too bad on the number front, right? But you need to look at the why: When I look at, say, the 3mg dose, and see that out of 65 patients, 5 took off, 6 decided the side effects were intolerable and quit, 8 withdrew consent (legal speak for "heck no, you're not giving this to my kid any longer), it didn't work at all for 7 of them, and one of them quit for a reason we don't even know... I get a 58% efficacy rate. Alright, that's a better than 50% chance the drug will work for a population. Reason enough to give it a whirl for most people. Especially since 3 mg is the dose the company is pushing. But that isn't the question. The question is: Why aren't they pushing the 2 mg dose? If you look at chart number 2, the endpoint is near identical. On graph 3, you see that, percentage wise, the side effect profile is lower, and fewer people bailed from the study. And that makes me question the whole bloody study. FWIW, Clonidine does essentially the same thing as Intuiv (it is also an Alpha 2A-adrenoceptor agonist), has been around forever, and is on the $4 list at pharmacies. Neither one of them can be used by patients with certain health issues (hypotension, for example), and, as far as I know, most people won't Rx them to anyone with a seizure disorder. a Quote Link to comment Share on other sites More sharing options...
asta Posted March 27, 2011 Share Posted March 27, 2011 (edited) Decompensating - how? I understand compensating, but decompensating I'm trying to figure this out in relation to our issue. HELP! Compensating is when a person is able to compensate for something that is going wrong. Decompensating is when they are not able to do so. eg: A person with ADHD who has learned coping skills to work around a deficit (say, my inability to clean house because I flit from room to room: I force myself to stay in one room and put things that belong in another room in a pile instead of leaving that one room) is "decompensating" if they are suddenly no longer able to utilize those coping skills to accomplish a given task. By the same token, a person who has been stable on a medication regime who suddenly has a marked behavioral decline is said to be decompensating because their body/mind, for whatever reason, (change of life circumstances, need for med adjustment, shift in illness) is no longer compensating for their illness. Vitamin B/family, vit D and fish oil are over all good for her. B's would help with her mood issues. Exercise is important, etc. Fish Oil is the only non-drug that has been placebo tested and proven to have anti-depressant qualities. Because of this, scientists caution that using it in conjunction with other meds can cause a type of mild interaction - eg: more anti-depressant action, or the wrong kind of AD action in a patient. Some people are very sensitive to ADs, and, as you know, not all ADs are created equal. They all work in a slightly different manner and therefore behave slightly differently in each patient. For some people, they are the perfect "woosh - no depression" pill. For others, they are a "flattening" agent. For others, they are mania-inducing. For quite a few, they can actually induce rages (which is called dysphoric mania, BTW). I've heard of fish oil inducing mania in adults; I don't know about children. If you see it as positive for your kid, that is great. As in all things, though, recognize that "natural" doesn't mean "doesn't have a significant effect on the pharmaceutical picture". a Edited March 27, 2011 by asta Quote Link to comment Share on other sites More sharing options...
sheryl Posted March 29, 2011 Author Share Posted March 29, 2011 Asta, Wow, as usual you are a walking encyclopedia! LOL! In all sincerity you have such advanced knowledge with meds. You've been through so much and have researched alot it seems. I don't have time to address each issue, but suffice it to say that my dh and I emailed her neurol dr with several questions and concerns to be discussed this coming Tuesday during her routine appt. Your point about increasing lamot and decreasing ethosux is EXACTLY what we feel needs to be done. Also, she's not responding well to adderall anymore. So, enter intuiv OR straterra....non stim adhd meds. However, when I spoke with pharmacist today he said the generic to intuiv is clonadine (I forget how to spell this) which has been around for years. Some seizure patients respond ONLY to the older generation. Some the newer, etc. He went on to say that intuiv is given at night to "calm" down the patient, but that doctors STILL prescribe adhd med to be taken in the morning. It sounds like the same scenario as when we gave our dd risperdal and it gave her a hang over into the next day. There still doesn't seem to be answers. Still as confusing as ever. I've decided, out of shear exhaustion and frustration, to BUG her neurol or any of her drs to try different meds until they find one or a combo that works better than what we have. She's gone down hill this calendar year and gets worse by the day....she can not comprehend, process, recall, etc. These were all the traits she had when she was spiking. Talk to you again. THANKS, ASTA! Your input is ALWAYS appreciated. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted March 30, 2011 Share Posted March 30, 2011 Have you done any blood levels for the Lamictal? That might be very helpful, esp. if you have done them over time and could see if there was any correlation between certain blood levels and her behavior. I will tell you though that puberty can change blood levels faster than you can blink an eye which makes things tough. I would be VERY VERY VERY cautious about Strattera. It is an SNRI med which is similar to the SSRIs and it is an antidepressant. It can help some kids but our pdoc said she has not had any success using it with kids that also have mood issues as it can induce rages, mania, etc. I know that my 2 that tried it here (one with mood issues, one without) both had a terrible time with it and my non mood kid became aggressive, etc. at school and that had NEVER been an issue with him before. We have had good luck with Dexedrine which is an older stimulant--even when she couldn't tolerate other stimulants but of course, all kids are different and it might not work at all for your daughter. With the Risperdal did you ever try VERY small doses? I don't know what dose you tried but we went as low as 1/2 of a .25mg tablet---so 0.125mg. We dosed it a few times a day but that might be an option if it helped but was too sedating. Quote Link to comment Share on other sites More sharing options...
sheryl Posted March 30, 2011 Author Share Posted March 30, 2011 Have you done any blood levels for the Lamictal? That might be very helpful, esp. if you have done them over time and could see if there was any correlation between certain blood levels and her behavior. I will tell you though that puberty can change blood levels faster than you can blink an eye which makes things tough. Yes, Ottakee, dr orders blood levels "trough" 1-2 times a year. She has them usually every Jan and then another time. I have a feeling he "may" order her levels during her next visit this coming Tuesday. Also, an eeg would be helpful, again, and may be warranted with these issues we are facing. I would be VERY VERY VERY cautious about Strattera. It is an SNRI med which is similar to the SSRIs and it is an antidepressant. It can help some kids but our pdoc said she has not had any success using it with kids that also have mood issues as it can induce rages, mania, etc. I know that my 2 that tried it here (one with mood issues, one without) both had a terrible time with it and my non mood kid became aggressive, etc. at school and that had NEVER been an issue with him before. I'm the least versed person on this board when it comes to being informed with labels. It's all I can do to have a semi-typical (normal....don't like to use that word) day. SNRI? SSRI? I believe my dd may be depressed....she does not feel good about herself.at.all. Well, Intuiv then is one we'll ask for. It works differently than Strattera. The pharmacist said it's actually an old drug used for high blood pressure, but the medical community has come to find out it's useful for some adhd patients. He went on to say the doctors don't know "how" it's useful for adhd patients, but just that it's been proven useful. We have had good luck with Dexedrine which is an older stimulant--even when she couldn't tolerate other stimulants but of course, all kids are different and it might not work at all for your daughter. Dexedrine? Does it go by another name? I do believe some of the newer drugs may be better for many, save the Lamictal which is a wonder drug. With the Risperdal did you ever try VERY small doses? I don't know what dose you tried but we went as low as 1/2 of a .25mg tablet---so 0.125mg. We dosed it a few times a day but that might be an option if it helped but was too sedating. Yes, she was down to .125 mg as well. She ALWAYS yawns. This is something I've noticed since last year some time, so maybe it's a tic? Or, again, we need to look at a current eeg. SHE.YAWNS.EVERYDAY! AND.REPEATEDLY!!!!! It's obvious something is going on. Thanks again, O. I'm at my wits end and appreciate the suggestions and observations!! Quote Link to comment Share on other sites More sharing options...
Ottakee Posted March 30, 2011 Share Posted March 30, 2011 Has she had a sleep study done? Ideally a sleep study with EEG. If there are sleep issues, that could explain or go along with the mood/seizure stuff. Do you see her as depressed over all or going back and forth between depressed and manic/hypomanic/giddy/silly/etc? If her mood changes rapidly, make sure the doctor knows that. Dexedrine is the only name I know it buy. It is a much older med (like older than Ritalin I think) and very cheap. Works great here but again, kids are so different and we ONLY started it once we had the moods stable. I agree with your PUSHING the doctors for more answers and help with this. It would be wonderful if the pdoc and neurologist could consult to come up with a treatment plan. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted March 30, 2011 Share Posted March 30, 2011 Check out this book http://www.amazon.com/Straight-about-Psychiatric-Medications-Third/dp/1593858426 I have not seen this 3rd edition but I have the 1st one and it was very informative. Even if it is not totally up to date (meds change so fast) it woudl give you some good basic information of the various classes of meds, side effects, indications for use, combos of meds, etc. It would also help you with the vocabulary "doctor speak" of these things. Quote Link to comment Share on other sites More sharing options...
sheryl Posted March 30, 2011 Author Share Posted March 30, 2011 Has she had a sleep study done? Ideally a sleep study with EEG. If there are sleep issues, that could explain or go along with the mood/seizure stuff. Yes, she had a sleep study done "about" 2 years ago and one again just back in the fall. It did show compromised sleep. She was referred by neurol to go to an allergist. You may remember I posted a thread this past fall, I think, about the wonderful findings from the allergist. He found some obstruction in her nasal passageways that may prohibit appropriate breathing. He prescribed Flonase and it worked.wonders! A completely new and refreshing daughter we had from around Nov to Jan, then all H*LL broke loose and her behavior deteriorated. ????????? :confused: Do you see her as depressed over all or going back and forth between depressed and manic/hypomanic/giddy/silly/etc? If her mood changes rapidly, make sure the doctor knows that. Well, I think she hides the depression. She does not feel good about herself at all. And, she does get giddy and silly. I don't know what manic or hypomanic is exactly. Dexedrine is the only name I know it buy. It is a much older med (like older than Ritalin I think) and very cheap. Works great here but again, kids are so different and we ONLY started it once we had the moods stable. Still something to consider. I agree with your PUSHING the doctors for more answers and help with this. It would be wonderful if the pdoc and neurologist could consult to come up with a treatment plan. If this neurol doesn't do something this time, should I look for another neurol? Quote Link to comment Share on other sites More sharing options...
Ottakee Posted March 30, 2011 Share Posted March 30, 2011 If this neurol doesn't do something this time, should I look for another neurol? YES. Even if he does do something, a 2nd opinion wouldn't be out of order at all. My girls actually see one neurologist mainly but then another one 3 hours away every 6 months. Does she have a pattern of things going "down hill" at certain times of the year? Check out http://www.bpchildren.com/files/Download/TreatmentGuidelines.pdf for more descriptions of various behaviors. This is another one of those doctor "speak" type things. This might help you understand more of the terms like mania/hypo-mania, what depression can look like in kids, the rages, etc. Even if bipolar is not part of it, knowing more can help you explain to the doctors how/why she is different. I don't know what access to doctors you have but with very special/unique kids like this, it is not uncommon to drive :auto: 2-3 hours away for doctors that can really help. Keep pushing until you do get help. Quote Link to comment Share on other sites More sharing options...
asta Posted March 30, 2011 Share Posted March 30, 2011 (edited) Clonidine (Catapres) and Intuniv are not the same drug. They aren't even the same molecule. Intuniv was based on the same concept as Clonidine. Shire took Clonidine, tweaked it by adding an oxygen molecule and different filling and extension agents, and made a time release drug. But they aren't the same drug. (see the little attached pictures of the molecules). Have you ever read anything about how seasons effect seizure disorders? [typing this while ottakee is typing hers] I'm not talking about seasonal affective disorder (SAD). Seizure patients also go through distinct cycles. I'm going to quote two opposing abstracts here. The first one, written in 2000, was done on mice and says that, for the main anti-convulsants in use at the time, drug levels dropped, for no apparent reason, in March and April (which one would assume would lead to increased seizure activity and behavioral issues): With all three anticonvulsants, marked seasonal variation was observed in both seizure models with lowest anticonvulsant efficacy and potency in March and April, i.e. in late winter and early spring. The most marked loss of anticonvulsant activity in this period of the year was observed with valproate. Analysis of drug levels in plasma and brain indicated that the seasonal variation in phenobarbital’s and carbamazepine’s anticonvulsant effect was predominantly due to alterations in drug metabolism leading to reduced brain levels in March and April, while the seasonal rhythm in valproate’s activity appeared to be mainly related to altered pharmacodynamic activity. These findings indicate that the time of the year is an important variable in the experimental evaluation of anticonvulsant drugs. Furthermore, the present data add to the accumulating evidence that endogenous circannual rhythms should be considered during animal experiments under controlled laboratory conditions. The role of technical, biological, and pharmacological factors in the laboratory evaluation of anticonvulsant drugs. VII. Seasonal influences on anticonvulsant drug actions in mouse models of generalized seizures Wolfgang Löscher, and Mia Fiedlera This second one was written in 2008: We examined 1715 seizures recorded on a dedicated epilepsy inpatient ward over 363 days in 2006–2007. Epileptic seizures, particularly complex partial seizures are less likely to occur on bright sunny days, than dull days. This correlation remains stable when seasonal patterns are controlled for. Non-epileptic attacks do not conform to this pattern. More work is needed to refine the relationship between sunlight and seizure patterns, nevertheless these findings raise the intriguing possibility of palliative light box treatment trials for some patients with medically intractable epilepsy. Seeing the light? Seizures and sunlight Sallie Baxendale Yet this one says no seizures on SUNNY days - which one normally associates with Spring. Well, depending on where you live... Which makes me think back to the forced normalization thing. Brain zaps can go either way: they can zap an "out of control" mood into submission, or they can zap a "normal" mood into one that is all over the map. I will be going along peacefully, and then (very rapidly - like, an hour) get nastier and nastier until BAM! Seizure. Then I'm the nicest person you've ever met. It's like nature's version of electro-shock therapy. So thinking about your daughter here, I wonder if either one of these scenarios fit? What I mean is, is it possible that, in her "good" periods, it is because her med level (of something - who knows what) is unnaturally LOW, and therefore her brain is able to sit where it is supposed to? Or, conversely, is there no sun in your Spring? asta Edited March 30, 2011 by asta Quote Link to comment Share on other sites More sharing options...
Ottakee Posted March 30, 2011 Share Posted March 30, 2011 Asta--this is all interesting as bipolar has a very seasonal component to it and most of the meds used as mood stabilizers (other than lithium) are seizure meds. Someday maybe they will figure out the correlation between seizures and bipolar and thereby be able to treat both of them more effectively. Add in hormones of puberty and life can be fun :-) Quote Link to comment Share on other sites More sharing options...
sheryl Posted March 31, 2011 Author Share Posted March 31, 2011 Asta--this is all interesting as bipolar has a very seasonal component to it and most of the meds used as mood stabilizers (other than lithium) are seizure meds. Someday maybe they will figure out the correlation between seizures and bipolar and thereby be able to treat both of them more effectively. Add in hormones of puberty and life can be fun :-) I may have heard on this board or somewhere that add and/or adhd occurs in the younger kids and as the child grows "can" develop into bp. Have you heard that or did you tell me that. I'm going on info overload. Clonidine (Catapres) and Intuniv are not the same drug. They aren't even the same molecule. Intuniv was based on the same concept as Clonidine. Shire took Clonidine, tweaked it by adding an oxygen molecule and different filling and extension agents, and made a time release drug. But they aren't the same drug. (see the little attached pictures of the molecules). Have you ever read anything about how seasons effect seizure disorders? [typing this while ottakee is typing hers] I'm not talking about seasonal affective disorder (SAD). Seizure patients also go through distinct cycles. I'm going to quote two opposing abstracts here. The first one, written in 2000, was done on mice and says that, for the main anti-convulsants in use at the time, drug levels dropped, for no apparent reason, in March and April (which one would assume would lead to increased seizure activity and behavioral issues): Asta, You are way over my head on topic of meds. I'm just not getting it. As I told O, I'm going on info overload here.......lots of terms, symptoms, diagnoses, etc. I don't know what to think. You and O are very knowledgeable with these issues....why am I not getting it? SAD....ok, you say you're not talking seasonal affective disorder, but go on to say seizure patients also go through distinct cycles. Asta, the terminology is way over my head and I don't mind sharing that with you. What I need to do is really spend the time to read and reread the info y'all have sent. Anyway, using vernacular, what is the different b/t temperment and mood? What does depression in a kid look like? Would dd be a candidate for a depression pill? I really don't know where to begin to sort all of this out. Her former psychiatrist who moved said she is NOT bp, but maybe my dd has grown into it. The role of technical, biological, and pharmacological factors in the laboratory evaluation of anticonvulsant drugs. VII. Seasonal influences on anticonvulsant drug actions in mouse models of generalized seizures Wolfgang Löscher, and Mia Fiedlera This second one was written in 2008: Seeing the light? Seizures and sunlight Sallie Baxendale Yet this one says no seizures on SUNNY days - which one normally associates with Spring. Well, depending on where you live... Which makes me think back to the forced normalization thing. Brain zaps can go either way: they can zap an "out of control" mood into submission, or they can zap a "normal" mood into one that is all over the map. I will be going along peacefully, and then (very rapidly - like, an hour) get nastier and nastier until BAM! Seizure. Then I'm the nicest person you've ever met. It's like nature's version of electro-shock therapy. So thinking about your daughter here, I wonder if either one of these scenarios fit? What I mean is, is it possible that, in her "good" periods, it is because her med level (of something - who knows what) is unnaturally LOW, and therefore her brain is able to sit where it is supposed to? Or, conversely, is there no sun in your Spring? asta Quote Link to comment Share on other sites More sharing options...
asta Posted March 31, 2011 Share Posted March 31, 2011 Temperament: Aye - that Irish lassie has always had a wicked temper! Don't get on her bad side or she'll lash right out on ye! Mood: Carole seems to change with the seasons. Or weekly, for that matter. She'll be cruising along, living her life - and it doesn't appear as if there are any particular issues going on - and then suddenly, it is as if a cloud comes over her, and she starts spiraling down. She starts taking everything the "wrong way", as if we're all attacking her - and we're not! We're saying the same things we were last week! or And then suddenly, it is as if Carole is much "brighter". She has a significant "bounce" to her step, a gleam in her eye that wasn't there before. She laughs just a bit too loud at things that may not warrant it. Things that were good before become FABULOUS. She is very busy. She starts many projects. She can seemingly do it all (though, if one looks closely, one will often see that the quality is low). She may be flirtatious. Or spendy. Or simply want, want, want. The first is what you're born with - you can usually see it in all the members of your family, going back generations. The second... it comes and goes. Just think of the week before your period! a Quote Link to comment Share on other sites More sharing options...
asta Posted March 31, 2011 Share Posted March 31, 2011 (edited) You don't grow into bipolar disorder: it is genetic. You gradually exhibit its symptoms. ADHD also does not develop into bipolar disorder. Because ADHD often has a rage component, and so does BP ("dysphoric mania"), and because the stimulants used in ADHD can mask depressive symptoms, the two are often hard to distinguish from one another once someone is diagnosed and treated for ADHD. There are many, many people out there who have both conditions. It takes a good doctor to suss out the individual symptoms of each. You can exhibit mood disruptions due to seizures that look a heck of a lot like bipolar disorder. Whether or not they are treated with an antidepressant is up to the neurologist and the psychiatrist working together. I know a handful of epileptics that can handle tiny doses of antidepressants. Most neurologists shy away from them because they agitate the very parts of the brain that they are attempting to calm down and keep from seizing. It is a cost benefit analysis: if a seizure patient is so depressed that they no longer wish to stick around, risking more seizures is worth dispensing an antidepressant and "seeing how it goes". Neuros will usually attempt to give an uplifting anticonvulsant (such as Topamax or Lamictal) before they go the antidepressant route. a Edited March 31, 2011 by asta Quote Link to comment Share on other sites More sharing options...
asta Posted March 31, 2011 Share Posted March 31, 2011 Dexedrine is one of the oldest, most basic stimulants out there. Many people who do not do well on the new fangled stimulant medications (that were "spun off" of Dex), can find success on a tiny amount of Dex. It has been around since the 1940s. a Quote Link to comment Share on other sites More sharing options...
sheryl Posted April 2, 2011 Author Share Posted April 2, 2011 (edited) Dexedrine is one of the oldest, most basic stimulants out there. Many people who do not do well on the new fangled stimulant medications (that were "spun off" of Dex), can find success on a tiny amount of Dex. It has been around since the 1940s. a Worth mentioning at dd's appt Tuesday. I may have heard on this board or somewhere that add and/or adhd occurs in the younger kids and as the child grows "can" develop into bp. Have you heard that or did you tell me that. I'm going on info overload. You don't grow into bipolar disorder: it is genetic. You gradually exhibit its symptoms. ADHD also does not develop into bipolar disorder. Because ADHD often has a rage component, and so does BP ("dysphoric mania"), and because the stimulants used in ADHD can mask depressive symptoms, the two are often hard to distinguish from one another once someone is diagnosed and treated for ADHD. There are many, many people out there who have both conditions. It takes a good doctor to suss out the individual symptoms of each. You can exhibit mood disruptions due to seizures that look a heck of a lot like bipolar disorder. Whether or not they are treated with an antidepressant is up to the neurologist and the psychiatrist working together. I know a handful of epileptics that can handle tiny doses of antidepressants. Most neurologists shy away from them because they agitate the very parts of the brain that they are attempting to calm down and keep from seizing. It is a cost benefit analysis: if a seizure patient is so depressed that they no longer wish to stick around, risking more seizures is worth dispensing an antidepressant and "seeing how it goes". Neuros will usually attempt to give an uplifting anticonvulsant (such as Topamax or Lamictal) before they go the antidepressant route. a Yep, I hear ya on this. I've often wondered if she is depressed. She's an only child, but that wouldn't do it would it? That just even sounds silly. So, what am I looking at here. Conditions like: add, adhd, odd, seizures, depression, bp and ........... Symptoms: many parrot one another so it's hard to accurately diagnose, sometimes. Need top notch doctor. Meds: Some compromise the very condition they are trying to treat. Oy! :confused: One med may be dispensed to treat one of her "hot" areas and yet have a compromising effect on another issue she is facing. According to the description above, she has issues with temperment AND mood. As a side note, the extra dose of lamictal for a week does not show any improvement. What do ya make of that? That's just crazy to me. I don't know what to make out of it. Edited April 2, 2011 by sheryl Quote Link to comment Share on other sites More sharing options...
sheryl Posted April 2, 2011 Author Share Posted April 2, 2011 Asta, Regarding my dd's appt this Tu.....are there any questions I'm not thinking of based on what you read from me here? If you read this by Monday and you have any suggestions, plmk. THANKS to you and everyone who has offered sound advice!!! Quote Link to comment Share on other sites More sharing options...
asta Posted April 3, 2011 Share Posted April 3, 2011 It sounds as if you've covered it -- the only other thing I would say to you is that one week of an extra Lamictal dose is not a very long time, nor is it necessarily the *correct* dose. Lamictal, like Topamax, is considered a "sweetspot" drug -- meaning that it isn't necessarily the "milligram level" that determines what is right (or even the blood level), but how the patient feels. Hang in there mom - you'll hold your own just fine at this appointment! a Quote Link to comment Share on other sites More sharing options...
Ottakee Posted April 3, 2011 Share Posted April 3, 2011 one week of an extra Lamictal dose is not a very long time, nor is it necessarily the *correct* dose. Lamictal, like Topamax, is considered a "sweetspot" drug -- meaning that it isn't necessarily the "milligram level" that determines what is right (or even the blood level), but how the patient feels. Our doctor says to give Lamictal at least 2 weeks at each dose to get it steady in the blood so 1 week might not be enough. Lamictal dosing can be tricky as my 14dd takes 62.5mg twice a day while my 15dd takes 225mg twice a day (down from 300mg). You also mentioned she might be depressed. Are you seeing MORE of this since you lowered the Lamictal? Lamictal has some mood lifting properties and can help with depression. Ask the doctor for a clear plan of action.........when should you call, how long before you should see changes, etc. Quote Link to comment Share on other sites More sharing options...
sheryl Posted April 4, 2011 Author Share Posted April 4, 2011 Our doctor says to give Lamictal at least 2 weeks at each dose to get it steady in the blood so 1 week might not be enough. Lamictal dosing can be tricky as my 14dd takes 62.5mg twice a day while my 15dd takes 225mg twice a day (down from 300mg). You also mentioned she might be depressed. Are you seeing MORE of this since you lowered the Lamictal? Lamictal has some mood lifting properties and can help with depression. We have not lowered the lam. Her zarontin was lowered a bit 3 years ago this coming summer. She was put on zarontin and became seizure free within a month....stayed on a high dose for several months, but that dose was too high for her (aggression, etc) so it was lowered and that's been maintained for 2.5 years. Ask the doctor for a clear plan of action.........when should you call, how long before you should see changes, etc. It sounds as if you've covered it -- the only other thing I would say to you is that one week of an extra Lamictal dose is not a very long time, nor is it necessarily the *correct* dose. Lamictal, like Topamax, is considered a "sweetspot" drug -- meaning that it isn't necessarily the "milligram level" that determines what is right (or even the blood level), but how the patient feels. I can believe this as she scores at the minimum level each time. Her body "processes" lam very well. To that I would say, then if her body is so effecient at processing lam then why the ******** is she having behavioral and/or emotional issues? Hang in there mom - you'll hold your own just fine at this appointment! a A/O, She's been up and down with lam in the beginning, but has stayed steady at 6 am and 4 pm at 25 mg each. Her neurolog has okayed us giving her 1-2 extra (boulous) on an as needed basis. She's not seizing and not spiking, but we've been giving her the "extra" for her behavioral/emotional issues. OK, ready to see what Tuesday brings. THANKS! Quote Link to comment Share on other sites More sharing options...
asta Posted April 4, 2011 Share Posted April 4, 2011 Actually, that isn't what I meant about blood levels. I sit at a "3" on a 0-7 scale for Lamictal. Technically, that is low, but I stay there, rain or shine. If I go down in milligrams, I get worse, medically, if I go up in milligrams for any length of time, I rash. I asked my neuro about "levels" - why they were important. He told me that, actually, after the initial titration, neurologists really only used them to check for compliance. They used physical response to monitor dosing. Is the patient seizing more or less? Is their behavior better or worse? Etc. Not what I expected to hear, but at least I don't have to get blood drawn any longer (I'm terribly compliant...). asta Quote Link to comment Share on other sites More sharing options...
Ottakee Posted April 4, 2011 Share Posted April 4, 2011 We do the blood levels regularly and my daughter is super compliant---mom gives meds twice a day without fail :-) She though is just about done with puberty. We can find the level that works best for her but through puberty we had to tweak the dose to stay at that level. Now that she is through puberty, we are having to go DOWN on the dose as the levels are rising despite NO dose change--just change in metabolism. Meds with kids in puberty are so tough. The doctor thinks that she will be able to lower her dose and then stay at a stable dose for years---at least that is our hope and prayer. Quote Link to comment Share on other sites More sharing options...
sheryl Posted April 4, 2011 Author Share Posted April 4, 2011 We do the blood levels regularly and my daughter is super compliant---mom gives meds twice a day without fail :-) She though is just about done with puberty. We can find the level that works best for her but through puberty we had to tweak the dose to stay at that level. Now that she is through puberty, we are having to go DOWN on the dose as the levels are rising despite NO dose change--just change in metabolism. Meds with kids in puberty are so tough. The doctor thinks that she will be able to lower her dose and then stay at a stable dose for years---at least that is our hope and prayer. Yes, hormones play a big part. Also, how one's body chemistry "processes" or "metabolizes" a drug (as you mentioned) irregardless of the weight of a person varies from person to person just based on that. Actually, that isn't what I meant about blood levels. I sit at a "3" on a 0-7 scale for Lamictal. Technically, that is low, but I stay there, rain or shine. If I go down in milligrams, I get worse, medically, if I go up in milligrams for any length of time, I rash. I asked my neuro about "levels" - why they were important. He told me that, actually, after the initial titration, neurologists really only used them to check for compliance. They used physical response to monitor dosing. Is the patient seizing more or less? Is their behavior better or worse? Etc. Not what I expected to hear, but at least I don't have to get blood drawn any longer (I'm terribly compliant...). asta Our lab uses a range of 2-20 for lamictal. My dd was at 1.9 or hovering on 2....when I say borderline, I mean borderline, baby. Anyway, he wasn't concerned b/c over time he sees my dd is seizure-free. They say we have tons of room to move with increasing lamictal which I feel we may have to do to get her through puberty. Then, hopefully she'll be a candidate to being weaned from her meds if she stays seizure = free. Her lam runs low and her etho runs high which Asta, you mentioned in an earlier reply....it rings so right on and in line with what my dh believes and that is this whole business of her body processing these meds. Her body is "efficient" with processing the lam and my dh believes that the etho and lam speak to one another "so to speak". Her etho is high....we're thinking that loweing her etho will result in more desirable behavior.... I took the advice of one of the poster's...shoot, I don't remember her name, but it's listed here, and have not been giving my dd a stim/adderall. It DID work at first, but maybe like her neuro meds, her body is NOW processing the adderall differently and not well...warranting the removal of it from her. Needless to say I'm anxious and nervous....a little about tomorrow. This guy is so by the book and that's good, but when something is off he needs to think outside the box. Will keep you posted! THANKS!!!! Quote Link to comment Share on other sites More sharing options...
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