My son is 21 has Downs Syndrome and Autism and lives in a residential college on a 1-1 staff ratio.
He had a congenital heart problem which resulted in 3 holes and a ruptured valve being repaired when he was 5 months old - the mitral valve has aupper end of moderate eccentric regurge leak and at some point will need a replacement.
Last year he had a grand mal seizure - with no apparent cause - he was put on to phenytoin for 6 months but as it stayed below theraputic levels and he had no sign of further seizures he was weened off it.
Over the last 6 weeks he has become tired, miserable, sad, angry, withdrawing from activities, complaining of dizzy spells and headaches.... because of his autism his pain threshold is crazy ( he had a huge hernia and felt no pain... he dislocates his knee cap by choice with no pain).... he is unable to explain how he feels or what he is experiencing so it is about guess work and piecing together evidence.
When he has a dizzy spell it is always followed with a headache... and tiredness.. glazed over eyes and poor concentration and verbal response. He becomes tired (a usual night for David is 3 hours sleep out of 24) sleeping in the day has been unheard of since before he became a toddler.
Today it was found his heart rate is very low... and it has been narrowed down to one of two causes - either he is having complex partial seizures, and during and after them his heart rate is dropping and then returning to normal or he has an organic heart problem and will require a pacemaker to correct the bradicardia... (this second option is scary because feeling no pain and hating change he will not be happy with the pacemaker and runs the risk of 'digging it out'
Tests have been ordered to find out which one it is - I wondered if anyone had any experience with Complex Partial Seizures....if the diagnosis is confirmed they think it might be frontal lobe because of his change in behaviours.
I understand the problem partially. My 10 y.o. son also has an autism, often sick and could not explain what is the problem.
I never gave him any medicatino. I mean no drugs. Thus, he has many supplements.
In order to answer your question I need to know a bit more.
1. Does your son have digestive problems? If "yes" - there is a very good option for that, one of my friends had epileptical seizures and said No Gluten No Casein diet helped him a lot. My son is on this diet since 3 y.o.
2. Is his motricity normal or he have problems with it - marching, doing things "by purpose"? I mean - are you sure he does not feel pain or he feels it, but due to his motor problem could not recognise where the pain is coming from and how to deal with it? If it is the first option (what I suppose), I could send you a description of a very good therapy for him that you could do at home yourself as I do, but it would not help immediately, you'd need to work several years on re-teaching him to "recognise" his body patrs and become more confident in himself (and resist less to changes). there is also Sensory therapy I could give you links and info as well. I just made a seminar on that here in the Netherlands.
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