:confused: Any help, insight is greatly appreciated!
My son is 18 yrs old and has deteriorated academically, medically past few years. Some days he is much better than others. Have tried to find a connection to sleep, what he is eating, stress, anything and have not been able.
Attention learning issues before first grade felt to have above average intelligence but never able to preform up to potential. Diagnosed ADD, on many meds without relief, eeg at 14 yrs. abnormal, believed to be reason for inattention.
Diagnosed partial complex epilepsy, not sure what diagnosis would fit now but has many petite mal seizures daily and occasional grand mal, one as long as 20 minutes, has been on so many meds without stopping seizures, now have started new AED, rufinamide or banzel.
Currently see epileptic neurologist who is considered to be one of the best.
Grand mal with video eeg in hospital, doctor amazed at how quickly partial seizure progressed to grand mal. states no clear focal area for activity.
I am a nurse and have noticed he sometimes smells like someone who has coded, ? acidotic.
He has always been hot, even in our cold New England winters wearing shorts, no temp.
Is unusally tolerant to pain.
Has issue with constipation, abdominal pain, was worked up at Children's Hospital Boston.
Has severe food allergies, with epinephrine.
Was on modified ketogenic diet, the low glycemic diet, seizures increased on the diet, wondering why high fat and high protein made him worse.
Sister with methylene tetrahydrofolate reductace gene mutation, he does not.
Metabolic doctor felt no issues, even though had low. anserine, carnosine, beta-alanine, and extremely high 1-methylhistidine. he was 7.2, normal 0-1.45
low alpha-aminoadipic acid, argininosuccinic acid, beta-aminolsobutyric acid, gamma-aminobutyric acid, homocystine, hydroxyproline, and sarcosine, with a high 3-methylhistidine, his was 3.0 normal 0-0.65
Thyroid, Lyme tests ok.
Remains on depakote, and now carnitine due to high ammonia levels, and adding banzel or rufinamide, just not able to stop seizures, surgery not option. discussed VNS pacer for seizures, would only work for grand mals.
Now running into issues with depression due to seizures and how restrictive his life has become and watching his friends drive and get ready to go to college.
sorry this is so long, Thank You!
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