Denisemomof4 Posted April 26, 2011 Share Posted April 26, 2011 I am so tired of life being hard. Things are on the mend and then we get a disturbing diagnosis for ds15 - the one who suffered a double concussion last year. His behaviors have spiraled since then and he disagrees. He doesn't even see it. But his behaviors at home and in school show that there's been a steady decline since he suffered the double concussion. Yesterday we got the diagnosis of conduct disorder and are told to put ds on abilify for depression, which he DOES have. Depression after head injury is also common, not to mention that he is genetically predisposed due to mental illness in extended family. Â The doctor feels very strongly that his condition was brought on by the double concussion. We're trying to get him into a specialist that studies specific injuries to football players, specifically those suffered WHILE wearing a helmet. I don't know what they'll do for us but hopefully it will help some. (ds got this during football practice) Â I'm typing through my tears because I just read of the side affects of Abilify. It's terrifying. And I'm telling you, I just can't handle one more catastrophe. One can only rebuild themselves so many times before giving up. Dh and I both are terrified of trying this medication. Â Anyone here who has experience with conduct disorder, whether brought on by head injury or not, and/or abilify in a teen, please share. Â I'm just so torn right now and I have to shower and put on a happy face for a play date this afternoon.:glare: Â http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000221/ Â WWYD? Would you give this to your child? I know it says that the risk of suicide is higher without treatment, but this absolutely terrifies me. Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted April 26, 2011 Share Posted April 26, 2011 My little man had a diagnosis of oppositional defiant disorder with signs of conduct disorder. He's only 6 though. Abilify is an antipsychotic, which comes with a heavy warning. My ds has been on Risperdal, also antipsychotic. It didn't work for him. Â No advice, just :grouphug: Quote Link to comment Share on other sites More sharing options...
abbeyej Posted April 26, 2011 Share Posted April 26, 2011 Oh, ((Denise))! ... I have zero knowledge, experience, or wisdom here -- just empathy for another mom. I'm so, so sorry that you (and your son) have to go through this. Quote Link to comment Share on other sites More sharing options...
Pam L in Mid Tenn Posted April 26, 2011 Share Posted April 26, 2011 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted April 26, 2011 Share Posted April 26, 2011 Oh Denise, I'm so sorry. Â Ds had to be on something--not Abilify, but an antipsychotic. A good friend who is a psychiatrist warned me they may treat him with antipsychs--and that it can be scary, but the doses are low. Â Yes, I'd give him the Abilify, and watch him carefully. That can be exhausting. Make sure he's in counseling with the family, too. Â Lots of hugs... Quote Link to comment Share on other sites More sharing options...
BlessedMom Posted April 26, 2011 Share Posted April 26, 2011 :grouphug::grouphug: No advice to offer just lots of hugs and prayers :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
MamaT Posted April 26, 2011 Share Posted April 26, 2011 :grouphug: No advice, but I wanted you to know I'll be praying for you and your ds. Quote Link to comment Share on other sites More sharing options...
kchara Posted April 26, 2011 Share Posted April 26, 2011 Conduct disorder can be scary. :grouphug: :grouphug: I would put him on it, and I would watch him VERY CLOSELY. I would also get him some serious therapy. Praying for you. Quote Link to comment Share on other sites More sharing options...
Shellydon Posted April 26, 2011 Share Posted April 26, 2011 I would have a specialist in traumatic brain injury (TBI) see your child before I put him on any medication. Quote Link to comment Share on other sites More sharing options...
JudoMom Posted April 26, 2011 Share Posted April 26, 2011 Do you trust the doctor? I know making the decision about whether or not to medicate your child is hard. I've always gone with whether or not I trust the doctor (my ds8 has had medical issues and has seen several specialists) when deciding whether or not to medicate. Â :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted April 26, 2011 Share Posted April 26, 2011 Oh I am so sorry, how difficult for you all. I've got nothing but I had to tell you I hope and pray for the right decisions for your son, for strength and peace and healing for all of you. :grouphug: Quote Link to comment Share on other sites More sharing options...
FaithManor Posted April 26, 2011 Share Posted April 26, 2011 A dear friend in school got a nasty concussion his senior year during a basketball game. He really struggled for the rest of his senior year and during his freshman year of college. This included personality changes. Finally, his parents took him to a neurologist who confirmed that the concussion was the cause, and to a neuropsych for treatment. This kid could not see the changes in himself that everyone else saw, but a college advisor road his "behind" about getting help so he became willing to work with the neuropsych. Â Medication, being shown on an MRI where the damage was and how it affected him by a medical professional, and regular visits really did help him. By the time he was out of college, he was fortunate enough to have fully recovered and did not need his meds anymore. Not all do experience that and must be medicated, to some degree, for longer periods. Â Brain injuries can steal a person's "personage" from them, but many including ones caused by concussions, are treatable. Â If your son hasn't seen a neuropsych, I highly recommend that you try to find one or get a referral from your GP. Â Faith Quote Link to comment Share on other sites More sharing options...
TheTwinsMom1 Posted April 26, 2011 Share Posted April 26, 2011 Both my children take Abilify for bipolar. So far we have had few side effects except for weight gain. Please take notice that the kids who take this med literally crave crabs and can gain alot of weight. Just something to watch for. Quote Link to comment Share on other sites More sharing options...
Teachin'Mine Posted April 26, 2011 Share Posted April 26, 2011 Oh, ((Denise))! ... I have zero knowledge, experience, or wisdom here -- just empathy for another mom. I'm so, so sorry that you (and your son) have to go through this. Â Same here. :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
elegantlion Posted April 26, 2011 Share Posted April 26, 2011 ((Denise)) NO advice, just :grouphug:. Quote Link to comment Share on other sites More sharing options...
Jennifer in MI Posted April 26, 2011 Share Posted April 26, 2011 (((Denise))))) This is SO unfair. You guys have had such a rough time lately. I'll keep this new need in my prayers. Quote Link to comment Share on other sites More sharing options...
katilac Posted April 26, 2011 Share Posted April 26, 2011 If the situation is manageable, I would do my very best to see a specialist before adding medications to the mix. Â I would also ask the current doctor to clarify the use of Abilify. My understanding is that it is not used to treat depression by itself, but rather is used as an add-on or enhancer for an actual anti-depressant. If he is prescribing it for other reasons/symptoms, you need to know that, so you can make an informed decision. If the other symptoms can be 'handled' for now, but you feel the depression must be addressed quickly, I'd probably want to look at (at least consider) a different drug. Quote Link to comment Share on other sites More sharing options...
Jan in SC Posted April 26, 2011 Share Posted April 26, 2011 First, :grouphug: Â Second, while I'm sure you have kept a lot of his behavior private, you have posted some of your worries here. Based on what you have posted, I would get a second opinion. If you have kept private (which I certainly understand!!) behaviors that are consistent with a conduct disorder fx, then I would find residential therapy. I'm talking about setting fires, using weapons against people, harming animals, and destroying property. From everything I studied, though it has been a while, anything less than this is not a conduct disorder. Â I thought abilify was given with an anti-depressant, only if it wasn't helping enough. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted April 26, 2011 Author Share Posted April 26, 2011 I would have a specialist in traumatic brain injury (TBI) see your child before I put him on any medication. Â we were told today it will be three months to get him in. He really needs help NOW. The dr. expects his behaviors to slowly die down on this, and she expects to eventually wean him off. Â He will be on a low dose. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted April 26, 2011 Author Share Posted April 26, 2011 Do you trust the doctor? I know making the decision about whether or not to medicate your child is hard. I've always gone with whether or not I trust the doctor (my ds8 has had medical issues and has seen several specialists) when deciding whether or not to medicate. :grouphug::grouphug::grouphug:  I don't trust doctors in general because too often we haven't been helped.  I did my research and this is what I diagnosed my son with before the appt. I didn't expect to hear it from a professional. To hear it was almost comforting, because I knew something was going on. The neurologists and pediatrician were of NO help.  I do know he needs medication and I do believe his diagnosis is accurate. I'm still scared. There is no treatment for CD but this is to treat the depression, which is making all his symptoms worse.  And he wants to play football again. NO WAY. Quote Link to comment Share on other sites More sharing options...
JudoMom Posted April 26, 2011 Share Posted April 26, 2011 I don't trust doctors in general because too often we haven't been helped. I did my research and this is what I diagnosed my son with before the appt. I didn't expect to hear it from a professional. To hear it was almost comforting, because I knew something was going on. The neurologists and pediatrician were of NO help.  I do know he needs medication and I do believe his diagnosis is accurate. I'm still scared. There is no treatment for CD but this is to treat the depression, which is making all his symptoms worse.  And he wants to play football again. NO WAY.  :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted April 26, 2011 Author Share Posted April 26, 2011 A dear friend in school got a nasty concussion his senior year during a basketball game. He really struggled for the rest of his senior year and during his freshman year of college. This included personality changes. Finally, his parents took him to a neurologist who confirmed that the concussion was the cause, and to a neuropsych for treatment. This kid could not see the changes in himself that everyone else saw, but a college advisor road his "behind" about getting help so he became willing to work with the neuropsych. Medication, being shown on an MRI where the damage was and how it affected him by a medical professional, and regular visits really did help him. By the time he was out of college, he was fortunate enough to have fully recovered and did not need his meds anymore. Not all do experience that and must be medicated, to some degree, for longer periods.  Brain injuries can steal a person's "personage" from them, but many including ones caused by concussions, are treatable.  If your son hasn't seen a neuropsych, I highly recommend that you try to find one or get a referral from your GP.  Faith  thanks, Faith. This son has ADD and we had neuropsyche testing done on him in the 6th grade. The new specialist he will see eventually is going to run new neuropsyche tests and compare the two. We were already told that he had contusions on his brain, and my friend today told me her sister was in a serious car accident and suffered a severe concussion including contusions, and she did get diagnosed with a mental illness after that. I've read that those genetically prone, which my son is, can have this happen.  One can hope and pray that this won't be a lifelong condition.  It makes me mad because I've taken him to three doctors about the behavioral issues. Only the forth started to listen. Quote Link to comment Share on other sites More sharing options...
Virg Posted April 26, 2011 Share Posted April 26, 2011 I wish I had something more pleasant to add but my DSD is 11 and is diagnosed with ODD (2.5 years ago) but well into CD (she isn't 13 yet so the diagnosis isn't official.) The behaviors can escalate more and more as I am sure you know. We have been told no treatments are available since she isn't co-morbidly depressed or otherwise diagnosed. (They have also said if she was it might really help the other behaviors to get partial treatment.) If there is anything they offer you, my opinion would be to take it. I can't even describe on this forum what we go through every day and the types of things that happen at my house. Every month is progressively worse for us. Honestly, at this point I would take anything they would give us, I am not sure any of the side affects could be worse than where we are. I hope your household doesn't have to reach this level. We will be praying for your child and your family. Â I hope this doesn't sound pushy btw that isn't how I mean it. I also don't want to start a debate. :) Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted April 26, 2011 Author Share Posted April 26, 2011 If the situation is manageable, I would do my very best to see a specialist before adding medications to the mix. Â I would also ask the current doctor to clarify the use of Abilify. My understanding is that it is not used to treat depression by itself, but rather is used as an add-on or enhancer for an actual anti-depressant. If he is prescribing it for other reasons/symptoms, you need to know that, so you can make an informed decision. If the other symptoms can be 'handled' for now, but you feel the depression must be addressed quickly, I'd probably want to look at (at least consider) a different drug. Â the depression has been going on for some time now and I don't think we should wait three more months. My ds has admitted he needs help, and that can't be taken lightly. Â We tried two medications on him before. One didn't work, the other he had a reaction to. The dr. is prescribing Abilify because she believes this will make his fuse longer. Quote Link to comment Share on other sites More sharing options...
Tap Posted April 26, 2011 Share Posted April 26, 2011 I am home for only a few minutes and will pm you later. Dd4 was just put on Ablify. She was gaining too much weight on the Risperdone. Â It has a better side effect profile that a lot of meds in this category and I have a lot of patients who take it and are happy with it. Â Â It has been around for a while and is used to treat a myiad of issues from depression to Autism irritability to bipolar. I researched it future when I put dd4 on it and feel pretty safe giving it to her. Â A bit you may or may not know, one thing that is different with this med, is that the side effects can worsen as you build up the blood levels. So, while most meds have worse side effects the first few days, and then people adjust to them, Abilfy has a long half-life and takes about 3 days to build up in the blood. It takes about 14 days to have a consistent level. ie.... If he complains about nausea on day 10, don't rule out the medication as a cause, just because he hasn't had it before. It may have just reached a blood plasma level that made him feel that way. Â Also, fair warning, without insurance it runs over $500 per month and many insurances require a PA to pay for it. Even if you haven't decided whether or not you are going to give it to him, have them run it through the insurance to get a copay amount or if needed get the dr started on the PA. Â Â Gotta run, ~Tap Quote Link to comment Share on other sites More sharing options...
Susan C. Posted April 26, 2011 Share Posted April 26, 2011 I would have a specialist in traumatic brain injury (TBI) see your child before I put him on any medication. Â :iagree: and/or a top notch neurologist. Definitely get a second (third if you feel the need) opinion. You don't want to experiment on your ds. Some doctors are a little too happy with their prescription pads. We just lost a family member (suicide), he was on cimbalta. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted April 26, 2011 Author Share Posted April 26, 2011 First, :grouphug:Â Second, while I'm sure you have kept a lot of his behavior private, you have posted some of your worries here. Based on what you have posted, I would get a second opinion. If you have kept private (which I certainly understand!!) behaviors that are consistent with a conduct disorder fx, then I would find residential therapy. I'm talking about setting fires, using weapons against people, harming animals, and destroying property. From everything I studied, though it has been a while, anything less than this is not a conduct disorder. Â I thought abilify was given with an anti-depressant, only if it wasn't helping enough. Â yes, I have kept a lot of this private but I will say that I am confident with his dx after reading extensively on this, both before and after his dx. I'm thankful that we have this dx and am hopeful for his future since he will get treatment. I'm also hopeful because this wasn't something that's been a long standing issue. Kids with CD since childhood have a bleaker outlook. Quote Link to comment Share on other sites More sharing options...
LibraryLover Posted April 26, 2011 Share Posted April 26, 2011 :grouphug: I don't have any helpful thoughts to offer, but my thoughts are with you. I am so sorry you are going through this. Quote Link to comment Share on other sites More sharing options...
Spy Car Posted April 26, 2011 Share Posted April 26, 2011 Steam is still blowing out of my ears about what that coach allowed to happen to your son. Grrrrrr!!!!! Â :grouphug: Â Bill Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted April 26, 2011 Author Share Posted April 26, 2011 I wish I had something more pleasant to add but my DSD is 11 and is diagnosed with ODD (2.5 years ago) but well into CD (she isn't 13 yet so the diagnosis isn't official.) The behaviors can escalate more and more as I am sure you know. We have been told no treatments are available since she isn't co-morbidly depressed or otherwise diagnosed. (They have also said if she was it might really help the other behaviors to get partial treatment.) If there is anything they offer you, my opinion would be to take it. I can't even describe on this forum what we go through every day and the types of things that happen at my house. Every month is progressively worse for us. Honestly, at this point I would take anything they would give us, I am not sure any of the side affects could be worse than where we are. I hope your household doesn't have to reach this level. We will be praying for your child and your family. I hope this doesn't sound pushy btw that isn't how I mean it. I also don't want to start a debate. :)  Thank you for your input. My ds does have CD with depression and was diagnosed with mild inattentive ADD in the 6th grade, not due to behavioral issues but due to his inattention in school - which happens to be WHY I put him in school. I didn't know what I was dealing with.  I'm so sorry your life is so difficult. Has your dr. tried other things? I think I read somewhere today that sometimes kids get so difficult that sometimes lithium is prescribed. Is your dd in any type of therapy? Also, are you and your dh in therapy? There is training for the parents to help them learn how to deal with these kids. I learned today through reading various articles/sites that many parents of these kids discipline and ground and their punishments get harsher as they try to get the child to comply, but this actually makes them worse. The worst day we had was when we told ds that his privileges (electronics) were taken away indefinitely. Our lives changed on that day. Only now do I understand why. :grouphug::grouphug::grouphug:I'm so sorry for you. Quote Link to comment Share on other sites More sharing options...
kalanamak Posted April 26, 2011 Share Posted April 26, 2011 Â WWYD? Would you give this to your child? I know it says that the risk of suicide is higher without treatment, but this absolutely terrifies me. Â I don't know what I'd do, but I do know it is considered one of the "safer" and "definitely less effective" antipsychotics among the psychiatrists I work with. Â If my child had had a good eval by a good doc, I'd consider it. Keep in mind they have to list EVERYthing. Compare the list of side effects to simple ampicillin. I had a patient on permanent dialysis because of ampi. I also knew a man who died because all his skin sloughed off because of ampi. Yet people take it by the millions. Just a thought. :grouphug: Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted April 26, 2011 Author Share Posted April 26, 2011 I am home for only a few minutes and will pm you later. Dd4 was just put on Ablify. She was gaining too much weight on the Risperdone. It has a better side effect profile that a lot of meds in this category and I have a lot of patients who take it and are happy with it.   It has been around for a while and is used to treat a myiad of issues from depression to Autism irritability to bipolar. I researched it future when I put dd4 on it and feel pretty safe giving it to her.  A bit you may or may not know, one thing that is different with this med, is that the side effects can worsen as you build up the blood levels. So, while most meds have worse side effects the first few days, and then people adjust to them, Abilfy has a long half-life and takes about 3 days to build up in the blood. It takes about 14 days to have a consistent level. ie.... If he complains about nausea on day 10, don't rule out the medication as a cause, just because he hasn't had it before. It may have just reached a blood plasma level that made him feel that way.  Also, fair warning, without insurance it runs over $500 per month and many insurances require a PA to pay for it. Even if you haven't decided whether or not you are going to give it to him, have them run it through the insurance to get a copay amount or if needed get the dr started on the PA.   Gotta run, ~Tap  Thank you so much, my friend. Your opinion means so much and your research, along with the fact you have dd on it, does put me at ease some.  Our insurance will pay for it, the doctors checked that out before prescribing it.  I just read your entire post to dh and we are thankful for your input!:grouphug: Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted April 26, 2011 Author Share Posted April 26, 2011 :iagree: and/or a top notch neurologist. Definitely get a second (third if you feel the need) opinion. You don't want to experiment on your ds. Some doctors are a little too happy with their prescription pads. We just lost a family member (suicide), he was on cimbalta. Â this is what scares me. I've taken ds to two therapists, one psychiatrist, a neurologist and his pediatrician. Sometimes we have to trust our gut, and my gut tells me that this dx is accurate. It's what I thought he had before even seen by this dr. Â I am nervous about the Abilify, but I'm just as nervous about him NOT taking it. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted April 26, 2011 Author Share Posted April 26, 2011 Steam is still blowing out of my ears about what that coach allowed to happen to your son. Grrrrrr!!!!! :grouphug:  Bill  I can't post my thoughts on a public forum. I am sick over this. Quote Link to comment Share on other sites More sharing options...
Virg Posted April 26, 2011 Share Posted April 26, 2011 (edited) Yes thank you :) DH and I go to therapy because she refuses to work during her hour. Nothing has helped yet but we keep praying! I just remembered the usual cause of ODD and CD, our daughter has FAS from BM so it is part of the reason that things don't help, the damage done to her brain is usually permanent. Edited April 26, 2011 by ds4159 Quote Link to comment Share on other sites More sharing options...
Susan C. Posted April 26, 2011 Share Posted April 26, 2011 this is what scares me. I've taken ds to two therapists, one psychiatrist, a neurologist and his pediatrician. Sometimes we have to trust our gut, and my gut tells me that this dx is accurate. It's what I thought he had before even seen by this dr. I am nervous about the Abilify, but I'm just as nervous about him NOT taking it.    Yes, I can see your point. Can you find another neuropsych that doesn't have a wait, even if you have to travel a bit?  Its good some on here have experience with abilify, that helps. Either way, I'm sure you are closely watching him.  :grouphug: Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted April 26, 2011 Author Share Posted April 26, 2011 I don't know what I'd do, but I do know it is considered one of the "safer" and "definitely less effective" antipsychotics among the psychiatrists I work with. Â If my child had had a good eval by a good doc, I'd consider it. Keep in mind they have to list EVERYthing. Compare the list of side effects to simple ampicillin. I had a patient on permanent dialysis because of ampi. I also knew a man who died because all his skin sloughed off because of ampi. Yet people take it by the millions. Just a thought. :grouphug: Â You and Tap are making me feel better about this. Thank you. Â Dh reminded me that the two medications we used were to treat depression, and this is an antipsychotic. I am thinking we need to try this since antidepressants didn't help. Â Sometimes when I'm so stressed out and my brain is swimming in those stress chemicals, it's so hard to think clearly. Maybe tomorrow will help us to make a decision more clearly. I am really thinking we at least have to give it a try. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted April 26, 2011 Author Share Posted April 26, 2011 Yes, I can see your point. Can you find another neuropsych that doesn't have a wait, even if you have to travel a bit? Its good some on here have experience with abilify, that helps. Either way, I'm sure you are closely watching him.  :grouphug:  we had a three month wait for his first neuropsyche test, and I think I waited four months for one after my concussion.  I really want him to be seen by the dr. who specializes in concussions received by football players since it was the banging of the heads with the helmets is what he specializes in. He will also do the neuropsyche testing.  I wanted to take ds to the Amen clinics but KNOW he won't change his diet so it will be a waste of money. :leaving: Quote Link to comment Share on other sites More sharing options...
Ottakee Posted April 26, 2011 Share Posted April 26, 2011 This is a tough one. My 15dd has bipolar and looks like she had a TBI (possibly shaken baby) but her MRI, etc. are normal. Â She did take Abilify about 7 years ago but it didn't work for her like Risperdal did (and still does). Each child though is different. Â I would call the other doctor's office and ask to be put on a cancellation list. Tell them, I can be there in X minutes (basically as long as it owuld take to get there) and give them a cell number as well. You can often get in much quicker. Also tell them the extent of the issues you are having as they might get you in on an emergency basis---be very polite and it never hurts to ask. Â I would also suggest a pediatric neurologist as well. Have they done any MRIs or anything? If so, get copies of all ER visits, MRIs, CTs, EEGs, blood work, etc. These will help any doctor he sees and having them in hand can make things go faster. Quote Link to comment Share on other sites More sharing options...
texasmama Posted April 26, 2011 Share Posted April 26, 2011 If the situation is manageable, I would do my very best to see a specialist before adding medications to the mix. Â I would also ask the current doctor to clarify the use of Abilify. My understanding is that it is not used to treat depression by itself, but rather is used as an add-on or enhancer for an actual anti-depressant. If he is prescribing it for other reasons/symptoms, you need to know that, so you can make an informed decision. If the other symptoms can be 'handled' for now, but you feel the depression must be addressed quickly, I'd probably want to look at (at least consider) a different drug. Â These are my thoughts, as well.:grouphug: Quote Link to comment Share on other sites More sharing options...
InterestingCase Posted April 26, 2011 Share Posted April 26, 2011 For anyone interested in more information about how to prevent this type of incident, you may want to take a look at http://www.sportslegacy.org/. Â So sorry to hear about the things with which your son is struggling. There is a great deal of research being done on concussions in sports and I hope you are able to find some answers. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted April 26, 2011 Author Share Posted April 26, 2011 This is a tough one. My 15dd has bipolar and looks like she had a TBI (possibly shaken baby) but her MRI, etc. are normal. She did take Abilify about 7 years ago but it didn't work for her like Risperdal did (and still does). Each child though is different.  I would call the other doctor's office and ask to be put on a cancellation list. Tell them, I can be there in X minutes (basically as long as it owuld take to get there) and give them a cell number as well. You can often get in much quicker. Also tell them the extent of the issues you are having as they might get you in on an emergency basis---be very polite and it never hurts to ask.  I would also suggest a pediatric neurologist as well. Have they done any MRIs or anything? If so, get copies of all ER visits, MRIs, CTs, EEGs, blood work, etc. These will help any doctor he sees and having them in hand can make things go faster.  Thank you! I know about cancellation lists but when you're in the midst of stress, you don't think about these things! Thank you! His psy is the one working with the specialist but we will be talking to her tomorrow and asking to be put on one.  Ds has had one CAT scan and two MRI's. They all were normal but the neurologist did tell us that he had contusions. She also said they don't show up on MRI. I know SPECT scans can show brain damage like no other and don't know if the specialist will order one.  I have the experience with the "medication dance" that you do. My brother and sister both tried so many different concoctions for YEARS. My brother is finally at a level where he can manage on his own. It literally took YEARS and I pray the same doesn't happen with ds. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted April 26, 2011 Share Posted April 26, 2011 I know you can't think of everything at once.......we wouldn't expect you to. Â What type of doctor is prescribing the Abilify? If you do start it, monitor him closely and if you see any signs of problems/worsening behavior, call the doctor ASAP. It might work great, it might not. These meds are just SO hard to figure out. Â On the plus side, they have more and better med options than before. Â I understand about the brain damage with "normal" scans. My 15dd has had all of her EEGs, MRIs, CTs, PET scans, etc. come back normal except one when she was 3 that got her started on meds. On the flip side, my 14dd is doing MUCH better than 15dd with much higher functioning but her MRI, EEG, CT, and PET scans are all abnormal and seem to fit 15dd's symptoms. So frustrating. Quote Link to comment Share on other sites More sharing options...
tex-mex Posted April 26, 2011 Share Posted April 26, 2011 (edited) A dear friend in school got a nasty concussion his senior year during a basketball game. He really struggled for the rest of his senior year and during his freshman year of college. This included personality changes. Finally, his parents took him to a neurologist who confirmed that the concussion was the cause, and to a neuropsych for treatment. This kid could not see the changes in himself that everyone else saw, but a college advisor road his "behind" about getting help so he became willing to work with the neuropsych. Medication, being shown on an MRI where the damage was and how it affected him by a medical professional, and regular visits really did help him. By the time he was out of college, he was fortunate enough to have fully recovered and did not need his meds anymore. Not all do experience that and must be medicated, to some degree, for longer periods.  Brain injuries can steal a person's "personage" from them, but many including ones caused by concussions, are treatable.  If your son hasn't seen a neuropsych, I highly recommend that you try to find one or get a referral from your GP.  Faith I agree.  I had a severe concussion in 3rd grade and according to my mom, my personality changed. I became more irritable and grumpy after being released from the hospital. I know from that point on, math and visual/spatial problem solving became impossible for me to understand.  My son at the age of 8 went into a coma (due to a rare disease) and once out of the coma, his behavior was very odd and bizarre. Finally, we took son months later to a Pediatric Clinical Neurologist for an evaluation. It cost $3500 but was worth every penny. She found evidence of a mild traumatic brain injury and mild learning disabilities.  My MIL recently was dx'ed with stage IV Malignant Melanoma and had a tumor removed via emergency craniotonomy surgery. The surgery left behind some severe cognitive deficits with MIL. Depression, lethargy, and inability to say what she is thinking. She previous was bubbly, active, and socially verbose with people. Traumatic brain injury strikes again.  Based on the test results, you can get son help for school/college via the Americans with Disabilities Act. Accomodate in classes. But take it one day at a time. Your son will need to accept the dx and become his own advocate. Your family will have to mourn what is lost and move on with accepting his dx. Learn as much as you can about the dx and help son. Find a support group. Get him into therapy. Be there for him.  If it helps, my SIL takes Abilify. She is paranoid schizophrenic since she was dx'ed as a teen in 1976. It has not been an easy road for her. One thing to expect is the meds will cause people to be fatigued and sleep most of the day. Some gain weight. SIL compensates with lots of caffiene. There may be the possibility the drug will cloud his mind and make it hard for him to focus or concentrate. All antipsychotic drugs do this. He needs the meds. Without them, he will be out of control and a danger to himself. I used to teach a young child with ODD and it was challenging. :grouphug: Edited April 27, 2011 by tex-mex Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted April 27, 2011 Author Share Posted April 27, 2011 I agree. Â I had a severe concussion in 3rd grade and according to my mom, my personality changed. I became more irritable and grumpy after being released from the hospital. I know from that point on, math and visual/spatial problem solving became impossible for me to understand. Â My son at the age of 8 went into a coma (due to a rare disease) and once out of the coma, his behavior was very odd and bizarre. Finally, we took son months later to a Pediatric Clinical Neurologist for an evaluation. It cost $3500 but was worth every penny. She found evidence of a mild traumatic brain injury and mild learning disabilities. Â My MIL recently was dx'ed with stage IV Malignant Melanoma and had a tumor removed via emergency craniotonomy surgery. The surgery left behind some severe cognitive deficits with MIL. Depression, lethargy, and inability to say what she is thinking. She previous was bubbly, active, and socially verbose with people. Traumatic brain injury strikes again. Â Based on the test results, you can get son help for school/college via the Americans with Disabilities Act. Accomodate in classes. But take it one day at a time. Your son will need to accept the dx and become his own advocate. Your family will have to mourn what is lost and move on with accepting his dx. Learn as much as you can about the dx and help son. Find a support group. Get him into therapy. Be there for him. Â If it helps, my SIL takes Abilify. She is paranoid schizophrenic since she was dx'ed as a teen in 1976. It has not been an easy road for her. One thing to expect is the meds will cause people to be fatigued and sleep most of the day. Some gain weight. SIL compensates with lots of caffiene. There may be the possibility the drug will cloud his mind and make it hard for him to focus or concentrate. All antipsychotic drugs do this. He needs the meds. Without them, he will be out of control and a danger to himself. I used to teach a young child with ODD and it was challenging. :grouphug: Â :grouphug::grouphug::grouphug:Oh my, your words just brought tears to my eyes. I'm sorry you've had so much experience. But now that you mention it, I've been telling the school AND the doctors that my son's grades are slipping since his head injury. It's been a year and a half and NOBODY listens to me. Â I worry about the Abilify perhaps causing him to sleep more and make it hard to concentrate as he already has ADD, and his ADD symptoms are FAR worse since his head injury. Â He's already admitting he needs help. We know he does. Â :crying: Quote Link to comment Share on other sites More sharing options...
chiguirre Posted April 27, 2011 Share Posted April 27, 2011 :grouphug: Â Ds1 tried Abilify and his behavior deteriorated markedly. It was bad, but he got back to his starting point when he went off the med. For him, the older and usually more side effect-prone risperidone worked better. He hasn't had any significant side effects from it, so that is a possible outcome. Ds1 is much more pleasant to be around with risperidone than he is without it. In fact, I don't think we could keep him at home without medication, so I'm very grateful that it's available and works for him. Quote Link to comment Share on other sites More sharing options...
sparrow Posted April 27, 2011 Share Posted April 27, 2011 :grouphug: I'm so sorry your family has had to deal with this. Quote Link to comment Share on other sites More sharing options...
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