Amino Acid Diet!
|Crystal actually does better taking some of her supplements in baby food. I take one jar of her favorite baby food and mix in her multivitamin, vitamin D and Juice+, then divide it into 4 and give it to her at 7am, 11am, 3pm and 7pm, to keep the nutritional needs coming all throughout the day.|
|This is what the Tolerex looks like. Each box comes with 6 packets.|
|We now use a syringe to give Crystal her Tolerex formula. She also is doing much better with it since I took her juice+ supplement out of her formula and now disguise the flavor in her favorite baby foods.|
I had put all my faith into the doctors and therapists and just followed their lead. I found as time went on that not always what they said was accurate for Crystal's circumstances. I began slowly by making sure that I analyzed every tiny element of Crystal's care and paying extra attention (taking notes sometimes) to everything the professionals said. Now after there have been several instances that I had to point problems out to them that Crystal was having, I have mostly lost my trust in the Dr.s and therapists. I began an extensive research warpath for my daughter and the amino acid diet is one of the things I fell upon. The next couple of months that followed I spent an enormous amount of time learning every aspect of the diet. And the more I read the more I found out. It is not a simple thing, but as I wrote in Crystal's testimony it is paying off for her. I will be happy to share any knowledge I have on the matter, but to be more efficient you will want to check into getting a dietician to assist you. And again they are not going to know this diet either or why so you will need you to teach them on SMA and what the parents of other sma children are finding in this diet and you will need them for all of the health issues involved. The last thing you want to do is cause them to have malnutrition, which can cause more weakness.
Creatine-if you try it use it with extreme caution. I was told it may help or it may not either way it won't hurt her. During the week and a half that Crystal took it she got weaker and weaker. Since I was told that it couldn't hurt her, my focus was not on the creatine, it was thinking that SMA was taking my daughter. I cried for days. I had been at peace at the news of her having SMA but by no means did I think it would go this fast. I finally called the fsma hotline and after an in depth conversation about this and that we figured out that she started her weakening the same time she started the creatine. She told me that creatine affects different children different ways. Her 17 year old son didn't take to it either and he was old enough to tell her that "I don't think I'm going to make it today" "Mom I really feel like I'm going to die today" "I just can't do anything" Needless to say I took her off immediately and to my joy Crystal bounced back to her usual self that very next day!!! Now since then I have read that others believe if too much is given that is when it becomes harmful. That may have been Crystal's case I don't know. But I am too gun shy to try it. But if you do, watch them like a hawk for any differences in their mood or level of activity and if they show you any signs of ill effects don't rule creatine out for a possible cause. Also start out in low doses and work them up, but never give too much of it.
Now the amino acid thing, please be patient I'm still learning. I first discovered it in HannahPrice's website under "Medical Info" It has a listing for nutrition: Amino Acids, Glutamine and Acidophilus. I suggest you start by reading those. In simplest words it is my understanding that because of the SMN protein gene that it damaged or gone in the SMA children, our children can't metabolize or digest proteins. So not only does it just get backed up in their systems it also does not get absorbed into the bloodstream to go fulfill its duties to the various parts of their bodies like muscles or nerves. So in addition to the weakness that they already have, they are also getting weaker because of lack of protein. Amino acids are the simplest forms of proteins. Meaning when they have protein in this form they don't need to digest them or metabolize they are already to be absorbed and go to where they need to go. Makes sense huh? Well there are several kinds of proteins. Some your body makes and some you eat. But for it to fulfill it functions in the body it must be a complete protein. Say glutamine for example is a protein, just one, by itself it won't do much good but combined with one of the other proteins (there are 21) then its tasks will be accomplished. All meat and dairy products have complete proteins and are said to be too much for SMA children to digest. However protein that is in vegetables, grains, bread and pasta (plant proteins) are said to be incomplete proteins and do not harm them but by the same token they don't do anything for them either. But we still allow them to eat them for the other vitamins and minerals carried in them. Then giving them the amino acid for their protein count. Tolerex seems to be the most popular amino acid mixture that is most beneficial to the kids. There are other ones available for example Crystal once used a formula that I found in an alternative health clinic that I used as a substitute until I can get the Tolerex. It has all the amino acids and vitamins and minerals added to it as well. Because of taking the children off dairy and meat they will loose a lot of important vitamins and minerals that they cannot do without. No local doctors or dieticians are going to know about this. There is a Doctor Kelley who stands by it and a Dr. Bach that also stands by it, but you are going to have to do this on your own. Providing extensive research and evidence that this is what is best for Crystal is what got the support of her family Dr.
Other diet info:
|Folic Acid: Eating for a healthier future.|
|Understanding Muscle Metabolism in SMA|
|Acidophilus: What it is and what it does for you.|
|In the kitchen at Crystal's school.|
|Other families words on the amino diet.|
|Eating Well: The Vegetarian Way.|
|Vegetarian Diets for Infants and Young Children|
|Tolerex Nutritional Facts and Content.|
|How cells work: Enzymes, proteins, glucose...|
|Amino Acids: Definition in full.|
|Proteins and its anatomy.|
|SMA and Enzymes.|
|SMA dietary issues.|
|Nutritional support in disorders of protein digestion and absorption|
|Notes from Crystal's first dietician at the start of her amino diet.|
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