RE: Set backs after sedation?/ ADDERALL warning/nebutal

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I might have already elmailed on the adderall, but I remembered when Colby was on nebutal, I don't if I spelled that right, anyway he was very drunken like, he couldn't walk, and we had to put him in his baby brothers walker just to keep him from falling down. I hate all those sedating meds. He was outside today and got really hot. Temp went to 102, he used to come in when he was so hot. Yesterday, I kept hearing this strange noise, and I thought it was his porch swing squeaking, but his brother looked out later and said those are the windshield wipers! He is quite ornery. We make sure the keys are hidden, he used to put the van in to neutral and go rolling down the drive way out into the street. He is a handful.

Hope all is well

mom to Colby,14,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 11, also healthy> >Reply-To: Mito >To: <Mito > >Subject: RE: Set backs after sedation?/ ADDERALL warning >Date: Thu, 27 May 2004 08:39:00 -0700 > >I can only offer my expeience to you. Samya, my older daughter, who is now >dead, Had setbacks after an MRI sedation. First of all, let me tell you that >we had no diagnosis at the time. WE had never ever heard the word mito >disease. She was sedated in the hopes that an MRI would help the diagnosis. >I will never ever forget that day. She came out seeming ver "drunk", vomited >15 times that day, had slurred speech and could not walk one step without >falling over. We were released and told she might be a little sick for until >all the medicine wore out. What happened to her was severe and lasted more >than 24 hrs. In fact, for 2 nights we put her to sleep on the floor on her >mattress in our room for fear she would wake up at night and fall down the >stairs. She was 7 and a half years old at the time. I am not sure what the >medicin was (I think Nebutol). After that she slowly recovered into >functional, but she started having severe speech stuttering, and all her >skills were worse from cognitive to mental status to motor. At the time, we >had not put the slow deterioration to the sedation. She died about a year >after that MRI. The MRI, ironically, came back normal and gave us no >diagnosis, and yet the sedation helped destroy her. Looking back now, and >knowing she had mito . I have no doubt that MRI spiraled her downfall. A >year later, she got a virus and deteriorated quickly in 2 months and died. >During her ICU stay at the same hospital she had the MRI, I was so concerned >about the medicine she was sedated with (Thinking then she had a chance of >life) that I made the doctors find out what it was. The ICU doctor told me >that she was overdosed double. Can you believe that? DOUBLE. I think they >are so booked for MRI's that they give the kids too much medicine so that >they don't wake up in the middle of the mRI and ruin their schedule so they >can go home! Leannn, who also has mito had 2 eustachian tube surgeries and >was given just enough sedation to knock her out for the 20 minute surgery >and was fine both times. Even then, we did not know she had mito either, but >the doctor was careful. Now, Leanna's mito doctor says if she ever needs >sedation, he must be consulted throughout with choice of med, amount and she >will not fast , but have an IV throughout the night. That , I am told, helps >a lot. Samya, too, fasted from 12 am to about 12 pm. BAD IDEA FOR MITO. That >has been my experience. I hope that helps. > > I also want to add a quick note for all the parents out there. Samya, at >one point, took half a pill of ADDERALL for ADD and had the same horiible >reaction with slurring speech, abnormal facial movements etc. The doctor did >not think it was the adderall and so we tried a quarter dose a week later >and same reaction. Please be careful because the doctors out there that do >not know mito(which is most) do not have a clue what permanent damage these >meds can do. Leanna has ADD but absolutely no medicine will be involved. >School will have to deal with it. I am not trying to tell you that I know >for a fact that ADDERALL is mito toxic, because I do not. I am only sharing >my own experience. I hate to see what happened to Samya repeat itself with >any of our precious children. Maybe the reaction was a SAMYA reaction only , >but I doubt it. > > God bless, > > > > > > > >Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna >with same disease. > >Samya's Memorial Site: www.Samya.org > >Email: Suhad1970@... > >Alt Email: Suhad@... > >AiM Chat: Suhad1970 > > > > _____ > >From: mr_lucy >Sent: Thursday, May 27, 2004 6:40 AM >To: Mito >Subject: Set backs after sedation? > > > >I have a question for all of you concerning odd symptoms after being >put under for MRI/MR Spec. > >Abigail went to Childrens DC yeasterday for testing...she woke >quickly. Drink after about a half hour. We were released. Normal, >but a little on the weak side yesterday. > >Today, she is still walking in a croutched position. When sedation >is involved...do mito kids often face a set back with gross motor >skills or in other areas? She is eating well, drinking...I expected >for Abby to be as well as she was prior to the MRI by today. It >could be the fasting periods mark. As she had fasted from 7pm to >11:30am the next day. > >Any and all thoughts are welcome! > >Thanks! > >Myst > > > > > >Please contact mito-owner with any problems or questions. > > > > > > >