I have posted several times before, but it has been awhile. I am feeling along again and needing support and advice. You wonderful parents always seem to be a great support!! Thank you so much.
My DS has a small list of challenges. He is 3 years old and 25 lbs.
Sensory Integration Disorder
Failure to Thrive
Apraxia - only speaks about 25 words, only people who know him understand those 25 words
Benign Rolandic Epilepsy
?Carnitine Deficiency - now here is the issue right now.
Small X Chromosome Duplication
Reflux
Poor Appetite
Low Tone
Left side weaker than right until last seizure and now right weaker than left side.
At about 20 months DS lost his speech and was silent for about 4 months before speech therapy helped him start learning words over.
MRI - normal
His Developemental Pediatrician found that DS has a carnitine deficiency in September. We put him on carnitine and he did great! His energy returned. We thought he was autistic. Reflux disappeared. His anger vanished. Wow it was a miracle. Since the geneticist found the chromosome duplication they have decided that the carnitine deficiency blood work must have been a fluke. The say he is not sick enough to have truely had a deficiency. That had me take him off the carnitine. He has been off it and he is chronically hand flapping, he has a huge anger problem! He is mad all day every day! His reflux is back. I have called the doctor and am not getting calls back. I don't want to put him back on the carnitine until after the order for the blood work. I want to get him rechecked but can't get the order. I want to take him to the Cleveland clinic, but they denied his referral to see a metabolic specialist when I had the doctor write a referral. Am I crazy? No I live at a camp where my husband works. All the staff have seen the changes on and off carnitine. It is not just me. The doctor refuses to refer him again. Ahh! What do I do next? I am going to attempt to self refer DS to the Cleveland Clinic.
Also what kind of doctor diagnosis autism? My son would be on the very low end of the spectrum, but I do think he is on there. It is not nearly as obvious when he is on the Carnitine, but now that he is off it again his RAGES are back. He is an angry boy! He is hand flapping and stimming whenever he is upset or excited. He lives on a daily roller coaster of emotions. I took him to burger king play land this last week and he was so out of place. I was so sad. The kids were going up and down the activity area. My son who was bigger than a few of the kids couldn't do it. He wanted to. All the kids were playing and laughing and he didn't have the energy to climb. He couldn't talk with them so he had a hard time. I will not do that again with him any time soon. He was very out of place.
He never wants to cuddle. He refuses to sleep if we are in the room. I can't read him to sleep. I am just mourning the fact that he is struggling, but because absolutely none of his specialists understand I cant get help.
I have now been completely blown off. My son suffers and I don't know what to do other than start over with a new set of specialists.
Is it normal for autistic children to behave the worst at home where few see it? Or do they act the same everywhere they go? DS is the worst at home and often in public he is more even tempered.
I wish I could find a doctor who would believe me. I have so many many questions and I want to be listened to.
I am sorry to be so negative in this note. I know there are parents on here with much more severe challenges and my heart goes out to you. I really am concerned for all the parents who post there challenges.
My DS has a small list of challenges. He is 3 years old and 25 lbs.
Sensory Integration Disorder
Failure to Thrive
Apraxia - only speaks about 25 words, only people who know him understand those 25 words
Benign Rolandic Epilepsy
?Carnitine Deficiency - now here is the issue right now.
Small X Chromosome Duplication
Reflux
Poor Appetite
Low Tone
Left side weaker than right until last seizure and now right weaker than left side.
At about 20 months DS lost his speech and was silent for about 4 months before speech therapy helped him start learning words over.
MRI - normal
His Developemental Pediatrician found that DS has a carnitine deficiency in September. We put him on carnitine and he did great! His energy returned. We thought he was autistic. Reflux disappeared. His anger vanished. Wow it was a miracle. Since the geneticist found the chromosome duplication they have decided that the carnitine deficiency blood work must have been a fluke. The say he is not sick enough to have truely had a deficiency. That had me take him off the carnitine. He has been off it and he is chronically hand flapping, he has a huge anger problem! He is mad all day every day! His reflux is back. I have called the doctor and am not getting calls back. I don't want to put him back on the carnitine until after the order for the blood work. I want to get him rechecked but can't get the order. I want to take him to the Cleveland clinic, but they denied his referral to see a metabolic specialist when I had the doctor write a referral. Am I crazy? No I live at a camp where my husband works. All the staff have seen the changes on and off carnitine. It is not just me. The doctor refuses to refer him again. Ahh! What do I do next? I am going to attempt to self refer DS to the Cleveland Clinic.
Also what kind of doctor diagnosis autism? My son would be on the very low end of the spectrum, but I do think he is on there. It is not nearly as obvious when he is on the Carnitine, but now that he is off it again his RAGES are back. He is an angry boy! He is hand flapping and stimming whenever he is upset or excited. He lives on a daily roller coaster of emotions. I took him to burger king play land this last week and he was so out of place. I was so sad. The kids were going up and down the activity area. My son who was bigger than a few of the kids couldn't do it. He wanted to. All the kids were playing and laughing and he didn't have the energy to climb. He couldn't talk with them so he had a hard time. I will not do that again with him any time soon. He was very out of place.
He never wants to cuddle. He refuses to sleep if we are in the room. I can't read him to sleep. I am just mourning the fact that he is struggling, but because absolutely none of his specialists understand I cant get help.
I have now been completely blown off. My son suffers and I don't know what to do other than start over with a new set of specialists.
Is it normal for autistic children to behave the worst at home where few see it? Or do they act the same everywhere they go? DS is the worst at home and often in public he is more even tempered.
I wish I could find a doctor who would believe me. I have so many many questions and I want to be listened to.
I am sorry to be so negative in this note. I know there are parents on here with much more severe challenges and my heart goes out to you. I really am concerned for all the parents who post there challenges.
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