Guest guest Posted February 12, 2005 Report Share Posted February 12, 2005 Thanks for that warning.. Hailee was on adderall for a little bit now she is on prozac and ritalyn i wonder if i need to be concerned.. will call the neuro. and hailee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2005 Report Share Posted February 12, 2005 Thanks for that warning.. Hailee was on adderall for a little bit now she is on prozac and ritalyn i wonder if i need to be concerned.. will call the neuro. and hailee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2005 Report Share Posted February 12, 2005 To everyone, If your child is on adderall for ADD or any medication for ADD, please read this. Before Samya died (a year before), I had tried her on adderall that a child psychiatrist prescribed for ADD. I gave her only HALF a pill to start and she had very single symptom listed all together from slurred speech, nausea, paranoya, involuntary muscle movements, especially in her face. Of course, Samya had nor read the side effects so it could not be psychological, right? I was scared to death, stunned and will never ever forget that experience. I told the doctor and he said he never ever heard of such a reaction and insisted I try again with only a quarter pill because maybe it was a coincidence. I tried 5 days later and I got the same results. I threw them away. That same month, Samya had an MRI where they sedated her and double dosed her anesthetic. I found this out later on when she was dying. Keep in mind, at the time mito was never discussed as a possibility and I had never heard of it. The MRI was done so we could get CLUE to the disease /disorder that was affecting her . The pyshiatrist must have thought I was making this all up. My mom saw her that day and was disgusted. Anyways, looking back now I have always had a gut instinct that both of those factors ( overdose for MRI and adderall) were initiators of her downhill spiral that caused her to die almost exactly a year later. Of course, I have no proof, but I have always felt that way. That is why I did not allow Leanna to be sedated for her mRI. The radiologist did not like it because I made them sit through one hour and lots of patience with a 5 year old in a machine that scared her to death. My logic was why would I want to cause Leanna to deteriorate so I can confirm that she will deteriorate. Basically, that is all the MRI did was confirm that her basal ganglia was just as affected as her sister’s. SO WHAT? What can be done about it, nothing. This morning on the news I heard that adderall was being taken off the market in Canada because it caused 20 deaths of children by causing strokes! I practically jumped out of my bed. I was not crazy and Samya was not the first one to have this problem. The USA claims IS IS SAFE and Canad is being paranoid and that the strokes happen only if you have a disposition or pre existing condition. Of course, Samya had mito so she did have a predisposition but we just did not know it then. I am wondering what mito docs say about this? Are any of your mito children on this and if so, what do they say? I cannot claim it to be medical evidence that a mito child should not be on adderall, because one child is not suffincient evidence, but the actions by Canada sure do make me feel strong about the destruction that adderall can do to a mito child neurologically. I am sharing this because I care about our children and if I can avoid this from happening to one child, I cannot stay silent. I would like to hear different opinions and experiences on this subject. I urge you to look at this very carefully before giving it to your child. Leanna has ADD and after what happened to Samya I refuse to medicate her although I have been asked many times and my answer is NO. I prefer to accommodate her ADD by behavior. I hope this helps. Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2005 Report Share Posted February 12, 2005 To everyone, If your child is on adderall for ADD or any medication for ADD, please read this. Before Samya died (a year before), I had tried her on adderall that a child psychiatrist prescribed for ADD. I gave her only HALF a pill to start and she had very single symptom listed all together from slurred speech, nausea, paranoya, involuntary muscle movements, especially in her face. Of course, Samya had nor read the side effects so it could not be psychological, right? I was scared to death, stunned and will never ever forget that experience. I told the doctor and he said he never ever heard of such a reaction and insisted I try again with only a quarter pill because maybe it was a coincidence. I tried 5 days later and I got the same results. I threw them away. That same month, Samya had an MRI where they sedated her and double dosed her anesthetic. I found this out later on when she was dying. Keep in mind, at the time mito was never discussed as a possibility and I had never heard of it. The MRI was done so we could get CLUE to the disease /disorder that was affecting her . The pyshiatrist must have thought I was making this all up. My mom saw her that day and was disgusted. Anyways, looking back now I have always had a gut instinct that both of those factors ( overdose for MRI and adderall) were initiators of her downhill spiral that caused her to die almost exactly a year later. Of course, I have no proof, but I have always felt that way. That is why I did not allow Leanna to be sedated for her mRI. The radiologist did not like it because I made them sit through one hour and lots of patience with a 5 year old in a machine that scared her to death. My logic was why would I want to cause Leanna to deteriorate so I can confirm that she will deteriorate. Basically, that is all the MRI did was confirm that her basal ganglia was just as affected as her sister’s. SO WHAT? What can be done about it, nothing. This morning on the news I heard that adderall was being taken off the market in Canada because it caused 20 deaths of children by causing strokes! I practically jumped out of my bed. I was not crazy and Samya was not the first one to have this problem. The USA claims IS IS SAFE and Canad is being paranoid and that the strokes happen only if you have a disposition or pre existing condition. Of course, Samya had mito so she did have a predisposition but we just did not know it then. I am wondering what mito docs say about this? Are any of your mito children on this and if so, what do they say? I cannot claim it to be medical evidence that a mito child should not be on adderall, because one child is not suffincient evidence, but the actions by Canada sure do make me feel strong about the destruction that adderall can do to a mito child neurologically. I am sharing this because I care about our children and if I can avoid this from happening to one child, I cannot stay silent. I would like to hear different opinions and experiences on this subject. I urge you to look at this very carefully before giving it to your child. Leanna has ADD and after what happened to Samya I refuse to medicate her although I have been asked many times and my answer is NO. I prefer to accommodate her ADD by behavior. I hope this helps. Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2005 Report Share Posted February 13, 2005 I will share this information with my neuro if that is ok. Leah isn't on Adderall, but my oldest son, is. Actually Adderall XR where he takes it only once a day. We haven't had any problems with him; but it doesn't hurt to question things. May be his doctor or his neurologist can explain this. Like why Canada is taking it off the market there. Thanks for bringing it up. We always educate ourselves and this may not apply to ; but it doesn't hurt to ask. I'm still in the learning process of ADD and I must admit that since has been on the medication he is doing MUCH better in school. Such a difference from 5th grade now in to 6th grade with concentration, etc. But there are many other types of medication out there for ADD and this is only one of them. But remember Ritalin gets a bad rap, too. So it is up to us, as parents to learn all about our child's disease and go from there. I hope everyone reads my emails for now. I'm having trouble with my email portion of the computer and must go directly to my site and when it comes up to you guys, it only says your name and not my name. Nerenhausen mom to Leah > To everyone, > > If your child is on adderall for ADD or any medication for ADD, please > read this. > > Before Samya died (a year before), I had tried her on adderall that a > child psychiatrist prescribed for ADD. I gave her only HALF a pill to start > and she had very single symptom listed all together from slurred speech, > nausea, paranoya, involuntary muscle movements, especially in her face. Of > course, Samya had nor read the side effects so it could not be > psychological, right? I was scared to death, stunned and will never ever > forget that experience. I told the doctor and he said he never ever heard of > such a reaction and insisted I try again with only a quarter pill because > maybe it was a coincidence. I tried 5 days later and I got the same results. > I threw them away. That same month, Samya had an MRI where they sedated her > and double dosed her anesthetic. I found this out later on when she was > dying. Keep in mind, at the time mito was never discussed as a possibility > and I had never heard of it. The MRI was done so we could get CLUE to the > disease /disorder that was affecting her . The pyshiatrist must have thought > I was making this all up. My mom saw her that day and was disgusted. > > Anyways, looking back now I have always had a gut instinct that both of > those factors ( overdose for MRI and adderall) were initiators of her > downhill spiral that caused her to die almost exactly a year later. Of > course, I have no proof, but I have always felt that way. That is why I did > not allow Leanna to be sedated for her mRI. The radiologist did not like it > because I made them sit through one hour and lots of patience with a 5 year > old in a machine that scared her to death. My logic was why would I want to > cause Leanna to deteriorate so I can confirm that she will deteriorate. > Basically, that is all the MRI did was confirm that her basal ganglia was > just as affected as her sister's. SO WHAT? What can be done about it, > nothing. > > > > This morning on the news I heard that adderall was being taken off the > market in Canada because it caused 20 deaths of children by causing strokes! > I practically jumped out of my bed. I was not crazy and Samya was not the > first one to have this problem. The USA claims IS IS SAFE and Canad is being > paranoid and that the strokes happen only if you have a disposition or pre > existing condition. Of course, Samya had mito so she did have a > predisposition but we just did not know it then. I am wondering what mito > docs say about this? > > Are any of your mito children on this and if so, what do they say? I cannot > claim it to be medical evidence that a mito child should not be on adderall, > because one child is not suffincient evidence, but the actions by Canada > sure do make me feel strong about the destruction that adderall can do to a > mito child neurologically. I am sharing this because I care about our > children and if I can avoid this from happening to one child, I cannot stay > silent. I would like to hear different opinions and experiences on this > subject. > > I urge you to look at this very carefully before giving it to your child. > Leanna has ADD and after what happened to Samya I refuse to medicate her > although I have been asked many times and my answer is NO. I prefer to > accommodate her ADD by behavior. > > > > I hope this helps. > > > > > > > > Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna > with same disease. > > Samya's Memorial Site: www.samyahaddad.com/.org/.net > > Email: Suhad1970@... > > Alt Email: Suhad@... > > AiM Chat: Suhad1970 > > > > > > > _____________________________________________________ > This message scanned for viruses by CoreComm > -- CoreComm Webmail. http://home.core.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2005 Report Share Posted February 14, 2005 Thank you for the information. I have two children on Adderall and it really makes me think. Thankfully neither have had any adverse side affects, or mito. They are, however, closely monitored by our pediatrician for anything. We were informed that Adderall is well known to cause facial twitches or bring on Touretts Syndrome. My pediatrician did tell us that the condition would already exist, but the child may have never had symptoms before. She did also tell us that if they do begin having the twitching side affect, it would be permanant and not go away if you took them off the medication. Also my children do not take the Adderall on weekends or any school break. They really need it just to help them concentrate in school. This warning does concern me alot. Hopefully they can find out some other way of helping that is much safer, because we really see so many positive affects from this medication. Have you ever thought of biofeedback for Leanna? It is something I have looked into, but there are very few clinicians who do this. I have yet to find anyone in my area who does this, and not sure if insurance will even pay for it. Best wishes Find files on your PC instantly with the new MSN Toolbar Suite beta – FREE! Quote Link to comment Share on other sites More sharing options...
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