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Post by Thomas Way on May 31, 2011 3:08:42 GMT -5
Hi katjat, I thought your post deserved a thread of it's own.
That's a very interesting finding. I wonder how many other AHC kids have been overlooked in this area, and also have an absence of pyridoxal 5 phosphate in their spinal fluid.
When Pat first got sick I did lots of research on all kinds of things that could cause paresis. One that I kept on coming across was something called 'vitamin b6 dependent epilepsy'. I think that pyridoxal 5 phosphate is a form of vitamin b6.
Anyway, as a result of this reading I started Pat on vitamin b6. He's still on it but for him it hasn't changed anything. We're only giving him a low dose though, so now I'm thinking we should get a spinal fluid analysis and have another look.
Pat doesn't have epilepsy (I'm really keeping my fingers crossed as I say this because it's early days yet), but it would be really interesting to see if justus' epileptic fits will be controlled with your new medication. I'm praying that for justus this is the breakthrough you need and all his problems will cease.
Has anyone else out there noticed a pyridoxal 5 phosphate abnormality in spinal fluid samples?
All the best, Tom
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Post by katjat on Jun 10, 2011 17:15:00 GMT -5
Hi Tom We have been giving Justus this Pydidoxal 5-Phosphate for about a month now. Epilepsy is the same, actually he had a really severe attack just yesterday. But there is a little bit change in his behaviour. It seems like he is a bit more focused on things and a little bit less restless. In a month he has had a keen interest in letters and knows 5 different letters ( R, S, Y, A, U) by now and is learning more. This is very encouraging as he is only 5-years old. We had real difficulties in findin pyridoxal 5 phosphate and it had to be specially ordered from U.K with a special license from Finnish ministy of health. It is manufactured by Klaire Labs and it is quite expensive ( about 200 USD for two monts treatment) His dosage is double from the normal dosage as his body isn't producing this nutrient at all. I'm also hoping and praying that this could turn out to be something really helpful for all of us. Katja
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Post by Thomas Way on Nov 20, 2011 4:02:40 GMT -5
Hi Katja
Any more improvement after starting on the pyridoxal 5 phosphate?
Hope you are all doing well,
Tom
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