Creatine: Crystal's experience. (April 2002)

Back in December of 2001, when I tried creatine with Crystal, she had such an ill effect with it that I never thought about using creatine again. Now, over the past year, I have heard and read from several other families that they give this to their child. A few thought that Crystal had problems with it because maybe I had her on too high of a dosage. I just listened but really had no intentions of ever trying her on it again, because it just made her so weak. I mean most changes in your child occur chronically, over a long period of time and it is not always so easy to notice them, but what I saw happen to her after beginning creatine scared me to death. I thought maybe she had been diagnosed wrong and that maybe she actually had a mild case of SMA type I. Within the week and a half I gave her the creatine, I saw her strength go down hill more and more every day. She almost lost the ability to even sit up. Her head control was so bad that any movement and she had to lay her head down or it would have fallen.

Well, a lot has changed since then and I have been able to witness more testimonies on how excessively even the smallest things effect our children's strength. I have been experimenting for quite some time with her diet and supplements and I had her stable for a month with her current amino formula and decided it was time to add the next supplement. I began her once again on creatine. That was two weeks ago. This time I gave her a much smaller dose daily. I thought that I had selected a small enough dose that it would not cause her any problems. The dose was small enough to hide her ill effects from me for a longer period of time this attempt. It took me a week to realize that she was having problems holding herself. I started charting her activities on notebook paper so I could compare each activity from the previous one. I actually didn't end up having to compare because I noticed that even when I was holding her and walking with her she would lay her head down on my shoulder. She even began having trouble with her walking exercises. Her standing times went way down and often times she said she just didn't want to do it. But what shocked me the most was when she was only in her horse's troft for a 15 minute period, and she was crying to get out. She wasn't standing, walking her moving around as well as she usually did.

The next visit she had with her PT, I asked him to evaluate her for me and leave me a know as to what he thought. He gave me details that were consistent with my thoughts. Thankfully, I was taught to only change one thing with her diet at a time and I could almost be for certain that creatine was what was causing this problem. That very afternoon, I stopped mixing the creatine in with her amino formula and Crystal showed the same results as the last time I took her off her creatine. The only difference is that she hasn't regained all of her strength that she had lost while taking creatine. But she now holds her head up without laying it on my shoulder and her walking has gone back to her being able to make it all the way to the bathroom again as she lifts her feet instead of dragging them. This probably will be the last time I try her with this supplement. I believe it just does not work with her system for some reason.

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