Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Lori, My daughter has mito DNA depletion syndrome and has been on ritalin for about 2 months now. She is nonverbal and very delayed, but was extremely hyperactive. She was very impulsive, obsessive in odd ways and very energetic. The ritalin has made a big difference for her. She is now much calmer, and can be focused more of the time. We did back off on her dose a little because she was actually too calm (I am sure that sounds like complete heaven right now for you!!) and was very nonemotional. We have really found a pretty good balance and I am happy to say she has tolerated the medicine very well. Sharon W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 boy can i relate to this post! my son slept for 16 years as little as two hours a night and i just aceepted it but then i felt like someone had given me a gift about 6 months ago when a different doctor prescribed trazodone and now he sleeps ALL night into the next morning!!! he had been to many other doctors and tried many meds but this one works for him! yesterday we went to the doctor seeking answers for this no wanting to eat problem and decided i wanted to try taking him off clonidine which is severe interaction possibilities with elavil and he is like a different kid today...he ate 3 bowls of honeycomb with milk, had his ensure drink and had an icecream too!!!!!! this is the first he ate like that since the problem began a month or two ago!!!!!!!!!!!!!! forgive me but i am so excited! and as well when he awoke this morning there was no terrible sick look on his face that he has been awaking with..i am just hoping we are getting one step closer to making him feel better!!! bradley's mom~~ linda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Just a response to having a child on ADHD meds.. I have a 5 year old son with suspected mito but 2 children who are not mito affected. (At least not that we are aware of.) One of my unaffected sons has ADHD. He has been on Ritalin, Adderall, Dexedrine, and Cylert all to which started okay but they were not the right meds for him. Now he is on Tenex (normally a blood pressure med) and also Wellbutrin. Like all kids with mito., kids with ADHD can have different responses to these stimulants. It is trial and error. In addition, behavior modification must also be implemented for success to occur. Unfortunately, there is no crystal ball which can predict if it will work. However, I know that if the child will truly benefit from medication you are doing them a disservice by not using it. This is my two cents worth based on personal experience. Good luck with finding the right meds. Loriann Melby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Just additional info. One of Tenex's side effects is weight gain. My son put on 5 needed pounds in 3 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Hi, Having a kid with autism, my life is one big round of behavioral intervention. Personally, I think they are very effective -- although a huge amount of work, since you have to be extremely consistent all the time. I've seen friends have disastrous results using psychiatric medications with their children with autism. Conversely, I think the *right* medication is a godsend. I spent four years working on behavioral intervention for a sleep disorder, only to find Terry had gastritis. Prilosec -- basically an antacid -- helped his sleep tremendously. And similarly, a friend had a very positive outcome with Ritalin for her son with Down syndrome and ADHD. Basically, I think meds. are like fire; they can be extremely helpful, but you have to be careful not to get burned. And behavioral interventions are usually still necessary, even when the Ritalin works. Just my two cents -- take it with a grain of salt. Lori Downs wrote: > > Hi, > > Alycia is driving us all crazy (her teachers, her > friends, her family and anyone in her vicinity)! > > The neurologist suggested that Alycia may have > ADHD and needs to be evaluated. However, the > neurologist sort of mumbled under her breath the > Ritilin might not be a good idea since there may > be a diagnosis of Mitochondrial disease. Her > suggestion is that we solve the problem with > behavioral intervention, with the help of a > professional. > > I can see how behavior intervention *might* help > but I am beginning to think that Alycia is way > beyond the point of being helped behaviorally. > We've tried everything but it seems like she just > can't help herself. She knows that there will be > consequences for her actions but at the moment > when she commits the " crime " , she isn't > considering the consequences. She is very > impulsive, to the point that she is sometimes a > danger to herself. She is like " a Bull in a China > Shop " because she is just all over the place and > doesn't look where she is going. Worst of all, she > never stops! She is moving constantly and talking > constantly....even in her sleep. We are all > exhausted! > > I don't like giving Alycia drugs, but Ritilin > sounds like heaven right about now. > > Has anyone had any experience using Ritilin with > mito kids (or any kid)? Do behavior interventions > work? > > Lori Downs > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2001 Report Share Posted March 14, 2001 Lori Downs wrote: > However, the neurologist sort of mumbled under her breath the Ritilin might not be a good idea since > there may be a diagnosis of Mitochondrial disease. Lori, At the recent conference in San Diego this was discussed, and part of the presentation was a list of acceptable drugs that are mito-friendly. The following is a quote from the presentation by Bruce H. Cohen, Department of Neurology at Cleveland Clinic; from Introduction and Overview of Energy Metabolism This is under the following heading: " TREATMENT OF THE DISORDERS OF MEMORY AND BEHAVIOR " Arousal and Attention - Adderall - Conserta - Ritalin - Cylert Agression - Clonidine - Respiradol (however this has been shown to suppress complex one function I think) Terri can tell you more about this.... Depression - Zoloft - Paxil - Prozac - Effexor Hope this helps, Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2001 Report Share Posted March 18, 2001 Lori, Ritalin made my child cry and whine and was worse after a short period of time. It also caused her not to be able to sleep. Have you tried adderall? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Lori, I saw your message and had to write. My husband and I are besides ourselves. Our son is 6 1/2 and sounds just like your daughter. He has been on Neurontin since July - no change so we are stopping that. He has been on Ritalin since November and I seriously think it makes him even more impulsive. We are continuing the Ritalin and we just added Risperadol on Thursday. He seems calmer tonight but did have a series of a few screaming temper tantrums tonight. Good Luck, I truly feel for you. I love my son so much, but at times I really can't stand the sight of him. I hear it could take a lot of time and patience to find the right medication. Behavior mod is good to learn, but if the child just simply can not handle themselves because of cognitive or neurological implications, all the behavior mod in the world won't help. I am a believer in the medication route. If you needed insulin for diabetes would you not take it? Beth ritalin? > Hi, > > Alycia is driving us all crazy (her teachers, her > friends, her family and anyone in her vicinity)! > > The neurologist suggested that Alycia may have > ADHD and needs to be evaluated. However, the > neurologist sort of mumbled under her breath the > Ritilin might not be a good idea since there may > be a diagnosis of Mitochondrial disease. Her > suggestion is that we solve the problem with > behavioral intervention, with the help of a > professional. > > I can see how behavior intervention *might* help > but I am beginning to think that Alycia is way > beyond the point of being helped behaviorally. > We've tried everything but it seems like she just > can't help herself. She knows that there will be > consequences for her actions but at the moment > when she commits the " crime " , she isn't > considering the consequences. She is very > impulsive, to the point that she is sometimes a > danger to herself. She is like " a Bull in a China > Shop " because she is just all over the place and > doesn't look where she is going. Worst of all, she > never stops! She is moving constantly and talking > constantly....even in her sleep. We are all > exhausted! > > I don't like giving Alycia drugs, but Ritilin > sounds like heaven right about now. > > Has anyone had any experience using Ritilin with > mito kids (or any kid)? Do behavior interventions > work? > > Lori Downs > > > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 Hi everyone, Thank you for your replies about ritalin and mito disease. It seems as though behavior modification is what we will be needing rather than ritilin since the consensus by the school staff is that the issue is behavior rather than ADHD. However, I am glad to know that ritalin is compatable with mito disease should we need to use it. Lori Downs Attachment: vcard [not shown] Quote Link to comment Share on other sites More sharing options...
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