My son began taking amino acid supplements 6 weeks ago as part of his treatment protocol. He takes arginine, glycine and creatine three times a day and is also taking phenobarbital at night to control his seizures. We're trying not to put much faith into the supplements as we've been told that they may not work but we are still hopeful. Sometimes so hopeful that it scares us.
His dosage for his weight (10kg):
L-Arginine 1400mg x 3
Glycine 500mg x 3
Creatine 1g x 4
It took us a while to find the best method of delivery and taking it with his milk at meals seems to work well. We have to really watch that he drinks it all and doesn't switch cups with his twin sister. Sometimes we mix their cups up and on at least one occasion, his sister drank his meds. Thankfully they are only amino acids and not a heavy drug like the phenobarb. The arginine and glycine are compounds so need to be kept refrigerated which isn't all that convenient especially if we are on the road or at friends. Then again, we have a gazillion things to do just to get out of the house with the two of them so what's one more thing? It will just take a little more time for it to become as automatic as applying sunscreen or putting on mittens. We'll get there.
According to the treatment protocol, bloodwork & urine needs to be monitored every 3 months while on treatment. Overnight EEG is every 6-12 months, kidney ultrasound every 6 months, and then the neuropsychology testing and MRI/MRS is every 12-24 months. It's all a little overwhelming.
2 comments:
OMG I didn't realize that arginine & glycine needs to be refrigerated. Arginine tastes really bad. We get the pharmacy to mix with sweet syrup. Our doctor does not like this idea, she really would like Justin to take it with water only or may be apple juice but it just seems so impossible. Krisztina D.
Our pharmacy makes it into a compound which is why we need to keep it refrigerated. If we were to receive it in powder form (which was an option) then it wouldn't matter.
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