A while back my son had a supplement strike and refused to take his creatine, glycine (liquid compound) and l-arginine (liquid compound). We tried mixing it with everything and anything but he flat out refused them. I wound up mixing them with sugar and squirting them in his mouth but you can imagine how well that turned out. A real battle of the wills!
So now we're back to the powdered versions and it's made a world of difference. They still taste terrible (to me) but when mixed with applesauce or yogurt, they go down easy. I have concerns about mixing them with dairy (something seems not right about mixing them with other amino acids) but I've been assured numerous times by his doctors that it does not matter.
The little guy's now THREE and tipping the scales at a whopping 28.5 lbs, here's his daily dose roundup:
Creatine 1.3g x 4/day
Glycine .65g x 3/day
L-arginine 1.75g x 3/day
Is low weight common amongst kids with Creatine Transporter Deficiency? I give him full-fat everything (mostly healthy fats) and as much food as he can eat, though he is a light eater.
That's all for now, not much to report. Preschool is back in session and we'll still figuring out our new groove. :)
Showing posts with label treatment protocol. Show all posts
Showing posts with label treatment protocol. Show all posts
Friday, September 16, 2011
Wednesday, January 26, 2011
Supplements
I mix my son's creatine, l-arginine (compound) & l-glycine (compound) with apple juice 3 times a day and his 4th dose of creatine with water. I've asked the good doctor if it matters what the supplements are mixed with and whether I administer them with food or on an empty stomach. I've been told that it doesn't matter.I've since spoken to a couple of parents in my situation or a similar one and they've been told that it does indeed matter.
A few parents I know juice various fruits and give each supplement separately, on an empty stomach. Now that is admirable but how does they do it? I'm serious. Wouldn't that require administering them 10 times a day on an empty stomach? I think I must have misunderstood. Anyway, another parent was told to mix the supplements in juice or water and administer them on an empty stomach (1 hr prior to eating or 2 hr after). Some use the powder form and others the compound.
So what's the dealio? Does it really matter? How do you administer supplements to your child?
A few parents I know juice various fruits and give each supplement separately, on an empty stomach. Now that is admirable but how does they do it? I'm serious. Wouldn't that require administering them 10 times a day on an empty stomach? I think I must have misunderstood. Anyway, another parent was told to mix the supplements in juice or water and administer them on an empty stomach (1 hr prior to eating or 2 hr after). Some use the powder form and others the compound.
So what's the dealio? Does it really matter? How do you administer supplements to your child?
Friday, June 18, 2010
Treatment Protocol
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.
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.