michele Posted March 5, 2008 Report Share Posted March 5, 2008 Our neurologist is now calling my son age six, Tourettes (for school purposes and getting him help). He doesn't believe PANDAS exists anyways. Claims it could be immune related tics. Calls them organic in nature. He is known as "the grandfather of tourettes" Dr. comes very highly recommended. In fact he wrote a recent featured article in the TSA newsletter and is wrote an exert in Sheila Rogers book. He wrote a prescription for Abilify to help with ADHD, emotional outbursts, tics, OCD. Have others here had experiences with Abilify? Were you successful using it? What kind of side effects? I am trying to research it now. Also said learning problems are common with this disorder. Possibly we should have testing done in the near future for LD. Thanks for your input. Michele Link to comment Share on other sites More sharing options...
P_Mom Posted March 5, 2008 Report Share Posted March 5, 2008 What exactly does "organic in nature" mean. There is a person who posted under one of the other forums that uses Abilify for her child. I think it is at the top of the posts right now. Kelly Link to comment Share on other sites More sharing options...
P_Mom Posted March 5, 2008 Report Share Posted March 5, 2008 Sorry, forgot to ask. Other than the handwriting difficulties, is your son showing any other signs of any learning difficulties? Thanks. Link to comment Share on other sites More sharing options...
Caryn Posted March 5, 2008 Report Share Posted March 5, 2008 Michele, Does he think your son has bipolar disorder or schizophrenia? Link to comment Share on other sites More sharing options...
CSP Posted March 5, 2008 Report Share Posted March 5, 2008 michele, If you have any magazines like woman's day... Abilify should have an ad. I see it can cause Tardive Dyskinesia, and suicidal thoughts. It contains phenylalanine, which I think Chemar said was not good fot TS. The ad said, Abilify for adults living with Bipolar. Good luck, I hope you find answers soon. C.P. Link to comment Share on other sites More sharing options...
michele Posted March 5, 2008 Author Report Share Posted March 5, 2008 What forum talks about abilify so I can check on it? I don't know what organic in nature means? That is what he wrote on a description. It may be for billing. There is a 333.3 after it. Also wrote myoclonus 333.2 for a problem list on a past appointment. His Dr's are very conservative on offering diagnosis. I will write more when I get his letter he is sending for the school meeting tomorrow. Maybe for insurance diagnosis he wrote these terms. The teacher sent a checkilist he had completed for my appointment. He is having problems with understanding some spoken language (vocab) and phoneme awareness. He made it sound as if he is behind. I already take him to tutoring once a week. Michele Sorry, forgot to ask. Other than the handwriting difficulties, is your son showing any other signs of any learning difficulties? Thanks. Link to comment Share on other sites More sharing options...
P_Mom Posted March 5, 2008 Report Share Posted March 5, 2008 Autism/Aspergers forum, listed post...4 year old son with no definite diagnosis, first post in topic. Link to comment Share on other sites More sharing options...
michele Posted March 5, 2008 Author Report Share Posted March 5, 2008 Kelly, This might help with the organic in nature definition. I found it interesting especially since I didn't think Dr. Erenberg bought into the PANDAS diagnosis. I guess he was recently with Dr. Murphy in Texas at a meeting for Tourettes. Maybe she shed some light on the disorder for him. http://www.behavior-consultant.com/discuss-pandas.htm Michele Our neurologist is now calling my son age six, Tourettes (for school purposes and getting him help). He doesn't believe PANDAS exists anyways. Claims it could be immune related tics. Calls them organic in nature. He is known as "the grandfather of tourettes" Dr. comes very highly recommended. In fact he wrote a recent featured article in the TSA newsletter and is wrote an exert in Sheila Rogers book. He wrote a prescription for Abilify to help with ADHD, emotional outbursts, tics, OCD. Have others here had experiences with Abilify? Were you successful using it? What kind of side effects? I am trying to research it now. Also said learning problems are common with this disorder. Possibly we should have testing done in the near future for LD. Thanks for your input. Michele Link to comment Share on other sites More sharing options...
michele Posted March 5, 2008 Author Report Share Posted March 5, 2008 I believe he is using it because it helps with the emotional mood swings. It is being used commonly for TS and ADD for the past couple of years with some success. He never mentioned bipolar or schiophrenia but Andrew did test positive for Pyroloria although the neurologist wouldn't believe in the Pyrrole testing. I felt it was odd too when I looked up its use. I think they are using it as an off label use much like ritalin is used for ADD. I wonder if Chemar did post it was not good for TS. I emailed Dr. Murphy to ask her. Michele Michele,Does he think your son has bipolar disorder or schizophrenia? Link to comment Share on other sites More sharing options...
kkver Posted March 5, 2008 Report Share Posted March 5, 2008 Michele I will keep him off the ablllify. there are couple of members on this forum who have posted very negative information about it. " airbucket and Deedee " http://www.latitudes.org/forums/index.php?...&hl=Abilify Link to comment Share on other sites More sharing options...
michele Posted March 6, 2008 Author Report Share Posted March 6, 2008 I wonder if they were on too high a dose if they were like zombies? He wants him on 2 mg and starting with 1 mg. Once a day. It does scare me. I just want him to slow down and get more focused about school and not be so emotional all the time. Michele MicheleI will keep him off the ablllify. there are couple of members on this forum who have posted very negative information about it. " airbucket and Deedee " http://www.latitudes.org/forums/index.php?...&hl=Abilify Link to comment Share on other sites More sharing options...
michele Posted March 6, 2008 Author Report Share Posted March 6, 2008 Could you give me the website? There are alot of autism forums. I'd like to read the posts. Michele Autism/Aspergers forum, listed post...4 year old son with no definite diagnosis, first post in topic. Link to comment Share on other sites More sharing options...
ilovedogs Posted March 6, 2008 Report Share Posted March 6, 2008 Could you give me the website? There are alot of autism forums. I'd like to read the posts.Michele Autism/Aspergers forum, listed post...4 year old son with no definite diagnosis, first post in topic. It's this forum, just the autism/asperger's section. Just go back to the main ACN forums menu and you'll see the category for autism/asp. Hope this helps! Link to comment Share on other sites More sharing options...
Chemar Posted March 6, 2008 Report Share Posted March 6, 2008 I know that Sheila also posted the FDA warning on Abilify here at one time but not too sure where it is now I have heard very mixed reports on this drug, with cons outweighing pros, especially in children Link to comment Share on other sites More sharing options...
michele Posted March 6, 2008 Author Report Share Posted March 6, 2008 I wonder what the cons are? Anyone here used it? I have read it can cause sleepiness at first. We are only to take 1 mg at first. Also it can cause loss of appetite or increase of appetite in some. We had our meeting finally today at school. He will get weekly OT there. Also now has an IEP . No accomodations were made. We can call a meeting at any time if we have concern. His teacher this year is wonderful and has made accomodations. I pray we will be as fortunate next year. New school. His teacher is somewhat worried about his recall of letters we wonder if it is handwriting related. Small gross motor delays are making it hard for him to write along with a short attention span. He loses interest quickly and can't stay on task. That is why the Abilify could help. It is used for attention, emotional and tics. I am still researching. Anyone who has tried Abilify please let me know. Michele I know that Sheila also posted the FDA warning on Abilify here at one time but not too sure where it is now I have heard very mixed reports on this drug, with cons outweighing pros, especially in children Link to comment Share on other sites More sharing options...
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