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robert t
March 21st, 2004, 01:29 AM
I know that there are forum members that have been involved with the glucosamine study. I have been able to find very little information on the study, so I thought I'd turn to you guys for help. :bow:

From what I have read, it seems that taking Glucosamine has helped with various MPS symptoms. I'm not really sure why, :? but if it works, that's good enough for me.

Anyway, my sister in law is a nurse, and posed a couple of questions:

1) Are there any side effects that the doctors are watching for? Since all the glucosamine products warn against giving them to children I guess this is a valid concern.

2) Are the compounds in glucosamine the same ones that MPS children cannot process to begin with? I'll go out on a limb and guess that the doctors just might have though of this, but since she asked.....

Thanks in advance for any information you guys can provide.

Robert

March 21st, 2004, 09:05 AM
Thanks Robert for posting this question I have a son with MPS II and have been wondering the same things. I can't help you but I willl be interested to find out what others have to say on the matter. :)
Misty

PattyT
March 21st, 2004, 09:32 PM
Hi Robert and Misty,

Here's what I can tell you from what we are doing with Jesse, (Sanifilippo A) He gets straight Glucosamine Hydochloride, nothing else added. 1000mg a day in the morning. ( I put in his oatmeal or applesauce)


Q. 1) Are there any side effects that the doctors are watching for? Since all the glucosamine products warn against giving them to children I guess this is a valid concern.

with the glucosamine hydrocholoride, there are no known side affects, unless the child has allergies to shell fish since there are no other additives... ie: chondroditin, MSM and so on, which so many compunds have.. also we are not using glucosamine sulfate either, he strictly said gluco..hydrochloride. The bottle doesn't even warn against giving to children, unlike the glucosamine/chondroitin that my husband takes... it does warn against under 18.. so I would think it is the compound that is a problem for children. My doctor didn't seem to have much concern over gluco.. hydrochloride, which is what Dr. Joe Clarke was speaking of in his studies.


Q.2) Are the compounds in glucosamine the same ones that MPS children cannot process to begin with? I'll go out on a limb and guess that the doctors just might have though of this, but since she asked.....


I don't know about other MPS childeren but Sanfilippo children should not have any problem processing glucosamine hydrochloride.

The differences I have seen with Jesse are, more focused in all his tasks, more frequent speech again, he is at least returning to being echoalic, which had lost most of for the last 8 months or so. Less stiffness and numbness in joints, and his behavior all around has become much less hyper and easier for him to enjoy little things like looking at books without chewing them to pieces or tapping them on everything or throwing them across the room. So for me it has been wonderful and I have seen nothing regressive or bad from it, only good. :angel: Jesse has been on it since Feb 12th this year. So far so good. It took about 4 - 5 days to start seeing changes in him for me, school has seen quite a difference too. He was actually able to complete all of his IEP goals this past quarter at a 100% woo hooo... 1st time ever that has happened.

Patty and Jesse