Slipper Posted February 22, 2012 Share Posted February 22, 2012 My oldest daughter, M, is profoundly autistic. She is non-verbal but does very well, all things considered. For the past 3 years (this being the fourth year), M has had what appear to be seizures during the months of Feb-May (general area, it lasts about ten weeks during that time). There are various symptoms, but it typically starts off with head jerking, facial grimacing, eyes rolling in the back of her head and mood/behavior changes. It progresses to the point of falling to the ground, muscle weakness (unable to stand up), visual hallucinations (she appears frightened and tries to fight something invisible and sometimes she seems to try to pick up invisible 'bugs' or something), loss of bladder and lethargic behavior (sometimes sleeping for about 24 hours) afterward. During these spells, her eyes dilate and become fixed, she starts breathing faster and her heart rate increases (nurses at the school are pretty quick to get to her after she falls). We have had several EEG's and a MRI (all clear - they released her with a diagnosis of 'transient altered awareness episodes') and CT scans/ultrasounds for various parts of her body. We try medication to calm her down (she has fits of screaming and she appears to be in pain) but it doesn't work (except the ones that put her to sleep and sometimes those fail). I've tried to explain to my doctor that these are 'seasonal seizures' but he says that such a thing doesn't exist (plus we have no proof she is having seizures). He admits that her medical history backs up that something is happening. But we don't know what. At some point, it just goes away. She does have low Vit D and we have supplemented heavily on it. Because of this, she has a tentative diagnosis of Seasonal Affective Disorder (not that we know what to do with it, we just give more Vit D). She takes risperdol. We did try adding in prozac last year and she developed seratonin syndrome. By the point we realized it (from her behavior) she had blood in her urine. Psychiatrists are typically worried about changing her medicine and they want to see her LOTS when making any changes. insurance won't cover our psychiatrist because autism is not covered for mental health. Each visit is $200 out of pocket. Currently, we do not have a psychiatrist (we haven't finished paying off last year's bills). This week-end, she started having shrieking and screaming fits along with head jerking/eye rolling behaviors and grimacing. I still had some meds from last year that helped her sleep and gave them to her which helped. Today at school, she apparently had some problems (I gave them a heads up). They noticed the head jerking/eye rolling and had the nurse watch her a bit. Her para told me today that M had written "Today I am Sad" (we are working on emotions with her) which is unusual (she's usually Happy). I am absolutely desperate. Does anyone have any idea of what this could be or anything that could help? Other than meds, we try the usual warm baths, rocking, favorite foods, calm music, etc. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 22, 2012 Share Posted February 22, 2012 :grouphug: I am so sorry that you are going through this. I don't have a lot of advice that I can give you. I have had very low vitamin D levels though and I can speak a little bit to that. High doses of vitamin D supplementation can lead to the development of kidney stones. I'm bringing this up because you mentioned blood in her urine. Also - if you are supplementing with vitamin D you need to also supplement with Calcium and magnesium because they help the absorption of the vitamin D. You can supplement magnesium easily by adding epsom salts to the warm baths that you give her. Quote Link to comment Share on other sites More sharing options...
Riverland Posted February 22, 2012 Share Posted February 22, 2012 nm Quote Link to comment Share on other sites More sharing options...
Ali in OR Posted February 22, 2012 Share Posted February 22, 2012 I don't really have any answers either, but based on our experience I do believe that seizure-type issues can be seasonal. Our oldest has seizures, even while on 3 seizure meds. We have a lot more problems in spring and fall than in summer or winter. Summer and winter are nice, stable, relatively happy months. In spring and fall, we have more seizures (summer and winter are not seizure-free, but there are fewer), but more difficult for us is that we have more behavioral issues--lots of screaming and fussing. Our dd is also non-verbal. We know she has more seizures and irritability when she is sick or doesn't get enough sleep. I really don't have a good guess as to what could be going on seasonally to affect her. Sometimes the lengthening days in spring mess up her sleep (awake too early in the am), but I don't think that's the whole story. And in fall the opposite is happening, but we still have problems. I asked her neurologist if it's possible to have more problems in some seasons, and he agreed it could happen (though he didn't have any answers as to why). He mentioned that his migraines were worse in some seasons as support for that. I don't have any good solutions for the problem. We enjoy summer and winter and kind of dread the difficult months. Do whatever you can to support good sleep habits. That's about all I've got for you! Quote Link to comment Share on other sites More sharing options...
Riverland Posted February 22, 2012 Share Posted February 22, 2012 I also want to add that it was very important to dd's pediatric neurologist that the seizures be stopped completely. Some meds would only reduce the seizures, so we had to switch several times to find one that stopped them. There is no way I will be able to explain this very well, but she said something like if they were not stopped completely then the errant electrical misfirings could spread to other parts of her brain. I urge you to see an epilepsy/neurologist specialist. And, remember, that a clear EEG and MRI do not exclude seizures. Quote Link to comment Share on other sites More sharing options...
Mergath Posted February 22, 2012 Share Posted February 22, 2012 I agree that seizures can definitely have a seasonal component, though that may be for many different reasons. In my case, I do tend to have more problems in the winter. My epilepsy is photosensitive, and I live in an area with a lot of trees. Something about the sky being white and the dark pattern of trees going by when I'm in the car is a trigger. Also, we do more driving while the sun is going down this time of year, and the flickering of the light between the trees is another issue. Another theory I read about is that in the winter, we tend to eat more carbs because we're in more of a hibernation mode. For some people, apparently, all those extra carbs can be a seizure trigger. You could try keep a food diary for awhile and see if anything jumps out. Quote Link to comment Share on other sites More sharing options...
Murmer Posted February 22, 2012 Share Posted February 22, 2012 Have you done the overnight video EEG? That is what we did and found out dd had epilepsy. It was a shock to us because I didn't see the episodes but they were there on the EEG but it took a full 24 hour of eeg to make sure. Quote Link to comment Share on other sites More sharing options...
speedmom4 Posted February 22, 2012 Share Posted February 22, 2012 My son has epilepsy and even if he doesn't have a seizure during an actual EEG there is always abnormal spiking which shows that the brain has seized in the past. Did your daughter's EEG show abnormal spiking? Hope you get some answers soon!! God Bless, Elise in NC Quote Link to comment Share on other sites More sharing options...
Slipper Posted February 22, 2012 Author Share Posted February 22, 2012 Thanks for the replies and suggestions. I appreciate everyone's input. Jean, I'll pick up calcium supplements today (I already have epsom salts) and start giving them to her. The blood in her urine was attributed to seratonin syndrome and the beginning of kidney failure. We had just started her on prozac along with risperdol and she didn't do well on the combination. Heather, I'm not sure what the trigger could be. During the past four years, we have moved and changed school systems. Everything around her has changed, but the behaviors are the same. Seeing doctors is problematic. I have a very sympathetic pediatrician and gastroenterologist (last year we explored the possibility that it might be gastro related, which it wasn't). The neuros in our state seem to be 'seizure only' and are reluctant to work with kids with autism without clear proof of seizures (EEG). We had a psychiatrist, but the seratonin experience caused us to need to see her several times within a short time frame (four days) and psychiatrists aren't covered for autism under our insurance ($200 a visit). I'm trying to find a psychiatrist now. Ali, during her problem times, she goes off her good sleeping habits and onto bad ones. She typically puts herself to bed every night by 8:00. During the spring, after her problems begin, she has trouble falling asleep (even with medication) until 1 or 2 (and sleep doesn't last long). We looked into migraines (and abdominal migraines) but the meds didn't seem to help (other than the ones that put her to sleep). Mergath, I'll try a food diary and see if anything comes of it. It's interesting that you mention you as photosensitive. Her first symptoms are typicaly her eyes and we usually end up at our eye doctor because M acts like her glasses no longer work. She gets very frustrated and breaks them (insurance doesn't cover those either - she wears bifocals). Our eye doctor told us that seizures can affect vision first and she felt my daughter was having seizures. Murmer, we did a regular EEG for 30 minutes, a sleep deprived EEG (that lasted about an hour), a 6 hour EEG and a 24 hour EEG with video. No seizures. These were done at two different hospitals (the 24 hour EEG was at Children's). Speedmom, I don't think it showed anything abnormal or they would have mentioned it, maybe? They all knew we were looking for answers to abnormal behaviors and they all felt they would find evidence of seizures. But there's nothing. I wanted to add that she also smacks her lips during her 'zoned out' periods. Because she has a bunch of people around her at times, several of them are familiar with seizures. Our last SLP had a son with epilepsy and she called to tell me about M's seizures (absence) during speech sessions. She said she tried to elicit a startle reflex by flicking her fingers in front of her eyes but M never blinked. Our current teacher (who has seizures) tried as well and said that she also felt M was having petit mal type seizures but they were very brief. They have all written statements and kept behavior journals that I take to doctor appointments, but our doctors seem to be going by what is on the EEG (which is nothing). It's frustrating. Thanks again... Quote Link to comment Share on other sites More sharing options...
Sasharowan Posted February 22, 2012 Share Posted February 22, 2012 Those sound like seizures to me. I have had 2 kids with seizure disorders, both started near the same time and ended near the same time. My daughter was 5 and ds10 was 3. SHe started in Aug, had breakthrough seizures every 2-3 months, had her last one at 7 and has been of meds since she was 9 with no problems. Ds started the following Feb., only had breakthrough seizures when he hit a growth spurt, had the last one at 6, and has been med free since 8. Doctors never did identify why they had the seizures or why they stopped. I recommend getting into a pediatric neurologist if at all possible though. Quote Link to comment Share on other sites More sharing options...
Sasharowan Posted February 22, 2012 Share Posted February 22, 2012 Can you video tape the seizures as they happen? Maybe that can give the drs. something to go on. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted February 22, 2012 Share Posted February 22, 2012 They certainly sound like seizures. Does she also have a seasonal mood component---more manic in the spring, more depressed in the fall or ??? My daughter has all the signs of seizures but other than the very first EEG at age 3 (before any meds) we have not been able to get an EEG to show any signs of seizures. That said, our neurologist is calling them seizures and treating them as seizures and it is working. Quote Link to comment Share on other sites More sharing options...
LostSurprise Posted February 22, 2012 Share Posted February 22, 2012 My son has a severe seizure disorder and what you're describing sounds like seizures. Many people do the 'smacking' sound when they're coming out of a seizure. Another symptom, when you think she may be experiencing a seizure...or just be a little out of it...check her pupils. Are they really dilated? During a seizure, even a very very light one with no other visible signs, often the pupils will dilate and cover most of the iris. As they're coming out of it the pupils will contract back to normal. I agree with the person who said to take a video. It will be easier for the neurologist to diagnose. If you're not aware of the different kinds of seizures check Youtube. Perhaps instead of saying 'seasonal' you could say 'environmental.' For someone who's prone to seizures there are often environmental triggers. Fast light changes. Constipation. Noise. Certain foods. Allergies. Not enough sleep. Even humidity/dryness. It's not unusual for one season to hold more triggers than others. It may be that your daughter is stable the rest of the year, or presents lighter seizures (short absence/petit-mal) and is overwhelmed by the number of triggers in Jan/Feb. In any case, a neurologist should be able to prescribe an emergency medication for you for those times when she has seizures. And of course, if she seizes more than 5 minutes or so, please get her to an emergency room. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted February 22, 2012 Share Posted February 22, 2012 Those sound like seizures to me too. I would be trying to find a different hospital, and I would drive to go there. Definitely keep a log of everything and catch on video what you can. Quote Link to comment Share on other sites More sharing options...
Whereneverever Posted February 22, 2012 Share Posted February 22, 2012 Take a video if possible. Is it possbile that she is experiencing psychogenic seizures? http://www.epilepsy.com/pdfs/transcripts_understanding_psychogenic_nonepileptic.pdf This would explain the presentation as well as why nothing shows up on EEG. :grouphug: how frustrating. I really think you need a Ped neuro to help clarify what is going on. Quote Link to comment Share on other sites More sharing options...
Slipper Posted February 22, 2012 Author Share Posted February 22, 2012 Sasharowan - we are going to try to videotape this year. We don't have a video camera, but our phones will take short videos (yay for cell phones!). Our teacher, para, therapists, etc are supposed to start using cell phones or digital cameras to record. Ottakee - the rest of the year she is fine. She is typically happy and sings (she can't talk, but she has some articulation in singing) the rest of the year. She's very routine-oriented and we have adjusted things so that her routines are not disruptive. We have no problems until late winter/early spring. Lost Surprise - yes, her pupils dilate. That was noted by a nurse who witnessed an 'episode' (as they call it at school). After she noticed it, she showed the teacher/paras what to look for with her eyes. Her seizures never last long, but the disorientation afterwards is disturbing. She has hallucinations and unusual strength (she threw a table last year, thankfully she was aiming for something she saw and not towards anyone else in the room). We have seen a neurologist. Actually, we have seen three. One was very far away and we went there only because she could work in an EEG early. She saw nothing and suggested we track for a few months. The other said that there were no seizures and that this was what autistic kids did. The last said he was reluctant to diagnose medicine without definite proof of seizures. Quote Link to comment Share on other sites More sharing options...
JFSinIL Posted February 22, 2012 Share Posted February 22, 2012 My kid with autism went to two different neuros and both did one-hour, medicated EEGs - all normal. It took a third doctor to have someone think to do an unmedicated, 24-hour EEG. That caught what were, for SillyAutismMan, an abnormal overnight EEG (mostly in the language processing part of his brain) and daytime absent seizures. If your dd is being medicated, or not actively having a seizure during the EEG, some docs will just dismiss it (One doc. said "Of course he stares - he is autistic". The kid was having absence seizures.) The third doctor was also the one who pointed out to me that if I caught SAM "staring" to quickly move in and act as if I was going to poke him in the eye (without of course actually touching the eyeball). Blinking to protect the eye is an involuntary response - if the person does NOT blink or flinch then it is a seizure. If they do respond - not a seizure (or you were not quick enough and it is over). It sure sounds like seizures - or at least very abnormal EEG activity - to me. Would not any doctor at least try a trial of, way, Depakote to see if the child improves??? Quote Link to comment Share on other sites More sharing options...
Slipper Posted February 22, 2012 Author Share Posted February 22, 2012 PrarieWind - we've tried different hospitals, though we've mostly used Children's. Typically, by the time we get an appointment and make it in, it's over and close to over, for the year. Last year, I called in January for an MRI but they couldn't see us until April. It's insane. :glare: Theretohere - it's possible it's psychogenic. I looked around and read some more and some of the symptoms sound similar. I'll keep looking into it. Thank you. JFS - our SLP and SpEd Teacher both have tried the eye 'response' trick. She doesn't blink. I'll ask about depakote if she isn't better in a week. I'm guessing that she is starting about ten weeks or so of problems, but if I take her to the doctor TOO early, they typically try to prescribe ME medication. :tongue_smilie: Quote Link to comment Share on other sites More sharing options...
sassenach Posted February 22, 2012 Share Posted February 22, 2012 I also want to add that it was very important to dd's pediatric neurologist that the seizures be stopped completely. Some meds would only reduce the seizures, so we had to switch several times to find one that stopped them. There is no way I will be able to explain this very well, but she said something like if they were not stopped completely then the errant electrical misfirings could spread to other parts of her brain. I urge you to see an epilepsy/neurologist specialist. And, remember, that a clear EEG and MRI do not exclude seizures. This is not always possible. When it comes to seizures, there is no guarantee that any amount or combination of meds will create a seizure free child. Depending on what type of seizure it is, this may or may not be a problem. Often, the seizures that do the most damage are the ones that are easiest to get under control with meds. But some seizures, like focal, are hard to control and don't do damage (though they still stink, obviously). Quote Link to comment Share on other sites More sharing options...
sassenach Posted February 22, 2012 Share Posted February 22, 2012 Wow, you have really been through the ringer. My heart totally goes out to you right now. Yes, I agree that they sound like seizures. Ds has had seizures his whole life. It sounds like your real challenge is finding a neuro who gives a d@mn. What ever happened to professional curiosity? Where is your closest med school? I would push for another 24hr eeg. Would there be a way for you to travel out of your area and to a seizure center. We used to live in Orlando, but we would drive down to Miami for ds's care (while he was on a special diet for the seizures). Ds has a whole laundry list of seizures, but the ones that your dd's episodes sound like are his complex partial. The hard part is, as I am sure you are already aware, that seizure treatment is not clear cut. You try one med, adjust, maybe add another, adjust, pull off of the other, adjust..... With your dd's history of reactions, I can understand why they want something more definitive, but at the same time, you can's always just treat based on EEG. Those doctors should know better. As for the seasonal part. Ds's seizures get worse if anything is "off" in his world. If he gets overheated, constipated, starting to get sick, ect, the first thing that happens is his seizure rate goes up. So, if she has SAD, or an allergy, or anything that is connected to this time of the year, that could definitely push her over her threshold. Keep pushing, mama. You're doing a great job. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted February 22, 2012 Share Posted February 22, 2012 I am so sorry your dd is suffering. It must be so hard on you. I understand. My dd12 has had these "episodes" since she was 4.5 and we really haven gottrn a good diagnosis. She was diagnosed with vasovagal syncope, but I am certain not all of her symptoms are related to that. There has been a drastic change in her symptoms this year, and I know with the vasovagal syncope it will get much worse as her period starts. I am wondering if the drastic changes in your dd could be at least partially related to hormones. Dd has always been cyclical, but hers were around 3 - 3.5 years apart. She has seen 14 or 15 doctors now, and we will see dr 5 or 16 next month (a metabolic specialist) and a gi specialist after that. I don't think there is much more I can do. I understain your worry and anguish while your dd suffers and you dont have any real answers. It is so painful sometimes. :grouphug: My dd would suddenly fall over, would lose her eyesight, face would turn blue, she would get really pale and chalky looking, she would constantly tap her middle fingers on her thumbs while saying over and over, "i need water, I needwater, I need water.". She would be disoriented and weak afterwards. We did catch one "episode" while it happened but the neuro didn't see anything unusual.:glare: The things that I know are triggers for dd is dehydration, not eating regularly (she mostly eats every hour to hour and a half) and being over tired/lack of sleep. I am glad you are keeping a journal of your dd's episodes. I hope this will give you answers about triggers. One thing I want to mention is that when dd was in school, she was very symptomatic from November through June including migraines and dizziness. I had to pull her out of school, and I know in my heart the flourescent lights were a huge trigger for her. She rarely gets heaches or migraines now and has gone years without them. Flourescent lighting can nduce seizures, in those prone ti them, and they can cause migraines. It is something to consider. :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Mergath Posted February 22, 2012 Share Posted February 22, 2012 My son has epilepsy and even if he doesn't have a seizure during an actual EEG there is always abnormal spiking which shows that the brain has seized in the past. Did your daughter's EEG show abnormal spiking? Hope you get some answers soon!! God Bless, Elise in NC Apparently that's not always the case, though. When I started having seizures, my EEGs were normal. I was still diagnosed with epilepsy, though, because I, you know, kept having grand mal seizures. They didn't find out for years that there's something wonky in my temporal lobe. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted February 22, 2012 Share Posted February 22, 2012 Do you have a doctor (other than neuro) who can call and really push neuro's buttons and demand that an action plan be created? Ped Neuros are notorious for being arrogant, condescending, and patronizing but they tend to take other doctors more seriously even if you are "just a mom". We deal with similar "regular" appointment waits at our local Children's hospital.....but we found that they keep a decent amount of work-in spaces that other docs can often request to get your kid in. They will also often do consults over the phone, in our experience, if another doc is willing to handle the meds end of things. You've got a pattern of suspicious behavior here, witnessed by all kinds of people, and I would be throwing a *FIT* if someone tried to explain it all away on "pushy mom". I understand the worry about putting her on depakote because depakote serotonin syndrome is not unheard of...but there are other things they could try. Quote Link to comment Share on other sites More sharing options...
Riverland Posted February 22, 2012 Share Posted February 22, 2012 This is not always possible. When it comes to seizures, there is no guarantee that any amount or combination of meds will create a seizure free child. Depending on what type of seizure it is, this may or may not be a problem. Often, the seizures that do the most damage are the ones that are easiest to get under control with meds. But some seizures, like focal, are hard to control and don't do damage (though they still stink, obviously). That is true. I was trying to impress how important it could be for her dd to get proper treatment. If my dd's had gone untreated (or mistreated), they probably would have continued to get worse and the doc was very concerned about that. Though I do know everyone's seizure situation is different and not all can be stopped. I really hope OP is able to find the help her dd needs. Quote Link to comment Share on other sites More sharing options...
LostSurprise Posted February 22, 2012 Share Posted February 22, 2012 We have seen a neurologist. Actually, we have seen three. One was very far away and we went there only because she could work in an EEG early. She saw nothing and suggested we track for a few months. The other said that there were no seizures and that this was what autistic kids did. The last said he was reluctant to diagnose medicine without definite proof of seizures. This is an inappropriate response. Are there others you can see? Take a little trip? Some neuros don't like to push meds without an EEG, but you have so many symptoms...plus visuals by medical personnel (the nurse)...there's no reason for them to put you off after all this. They may not want to prescribe everyday meds but they should prescribe an emergency med you can use if this pops up. Quote Link to comment Share on other sites More sharing options...
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