May 15, 2002:

This is a brief past history and update on Crystal's trials and tribulations with taking her Tolerex.

Crystal has been on the amino acid diet for almost a year now. I have done a lot of playing and experimenting with her other supplements as well. But most importantly, we have been working hard on building muscle tone, and in doing so boosting her tolerance for ingesting more amino acids. Crystal now tolerates a packet and 1/4 of a packet of her Tolerex powder. We know that she is constantly building muscle tone, because she is now finally gaining weight and her achievements are just unbelievable.

In addition to the increased dose of her Tolerex, I have also completed my experiments with ingesting meat substances and have come to the conclusion that it is no longer a problem for her to eat meat. I no longer put any limits on the type of meat or the frequency of eating them. I do however, believe that the amount should be considered at each feeding. Again, following the same theories, that since her muscle mass is so limited, which in turn limits the storage space of amino acids; I believe that the amount of meat or even Tolerex should be always calculated and limited to within her storage capacity. However, in Crystal's case, her appetite is so small, this is not an issue.

Now, I do not have documentation to all the whys and whats of Crystal now being able to eat meat. I know that I witnessed in August of 2001, that when I took her off milk and meat together, she showed a remarkable change in many areas of her abilities (refer to testimony of September 10th for details). I can not say if it was meat, milk or the combination of milk and meat together, because my mistake was taking her off them at the same time. But now, after taking Tolerex for almost a year and being on JUICE+, (a digestive aide and much more!) at the full dosage for almost 5 months, Crystal now incurs no problems what so ever with eating any meats.

Now, I also have no evidence to confirm that any of the protein ingested from eating meat IS IN FACT, being metabolized, digested, absorbed or utilized in the body. I just see on the surface that it is causing her no harm. It is my opinion that it is being digested, because whether it is metabolized or not, the body will still attempt to do so, and then Crystal will be incurring weakening episodes. It is my understanding that the affects of both milk and meat with children of SMA are: the body has to work so hard to try to digest them that they become weak and have difficulty with secretions and bowels.

We have one testimony to Crystal eating a half of a pork chop and reaching remarkable levels of activity the next day. Other than I just see continued strengthening and increased endurance.

Now, what it is really exciting is the differences in drinking Tolerex. Crystal's formula currently is as follows:
1 1/4 packet of Tolerex
250 mg glutamine
1 tablet of amino 75
4 capsules of JUICE+
1/2 multivitamin
1/2 vitamin D tablet
3 mg Calcium
1 1/4 tsp of Flax seed
2 tbsp JELL-O
2 1/4 oz of water
4 oz of juicy juice

I spent many months battling with Crystal over her drinking this formula. She is not tube fed and is so picky anyway. You all who have your children on this diet know how awful it smells. I stayed persistent with her taking the formula because of the importance it had with her. I stayed stressed. It seemed that soon after I got her to finish one dose then it was time to give her another one. Finally, we came to terms with it. I agreed to keep her excited and preoccupied with other interests and she agreed to take the formula through a syringe. Also, with the assistance of her speech therapist, I found that I was giving her too much of a mouthful at one time causing discomfort and fear for Crystal that she would possibly choke on it. So I have been successful with giving her smaller amounts instead.

Again, I don't have all the answers to the whys and whats questions as to why she is tolerating the formula better. But the formula had created other problems for Crystal as well, like it seemed to fill her up and then she had no desire to eat solid foods. So as she continued to get better at taking her formula, I continued adjusting the formula. I have actually got her Tolerex mixed with a total of 8 oz of fluid. Now, Crystal also eats much more regular foods in addition to getting her formula throughout the day.


Plus, what is most exciting for me is that I have been successful at weaning Crystal off the syringe and she is now taking her formula out of a sippy cup. In the morning when I am getting the other children dressed and ready for the day, I leave Crystal in her bed and give her the morning formula dosage and tell her that she can't come play until she drinks it all gone. In this situation and again, after she awakes from naptime, she will drink the formula all by herself. The other times I will have to lift the cup and do it for her. But if words could only described the "hell" we went through for a while trying to get her to take the drink, you would understand just how exciting this is for us.

Another, exciting issue for us is Crystal's fluid intake. We were having excessive problems with getting her to take any fluid at all. Originally, I mixed her formula with 18 oz of fluid, which seemed to be at a safe level. But then she would get nothing more. I always felt despite the doctors lack of concern over this matter that this just was not enough for her. I began giving her an ounce of water through the syringe on every hour. She tolerated this very well, but it was however, very time consuming.

To my surprise, on one of my mother's visits from Georgia, she brought my family a water filtration system of our own to be hooked up directly to our faucet. Which, I was very appreciative because my whole family are very big water drinkers. I did not have any idea how this would change things for Crystal though. The very first glass she had, without me telling her of any difference in the water, her reaction was, "Mommy, this water is good." And for those of you who know Crystal personally, you can just invision her expressions as her eyes light up and her tone changes to emphasize her joy as she says this. I was excited and hopeful of her response and of course continued offering this filtered water to her through the cup. As time went on she began to drink more and more of this filtered water. Now, she consumes approximately 20 ounces of this filtered water ALL BY HERSELF in a days time.

Crystal is truly an unbelievable child. She is so very special and I cherish each and every one of you who participate in anything that leads to perfecting her care treatment plan. I want to extend special thanks to the following for all of their support and guidance concerning this issue:

they will trust my sincerity

Stephanie Price

Mary bodzo

chad and angie barnett

krista scurria  

laverne heathcotte

janelle vanwinkle

Dr. Neil propst, od

janet rennels

carol ackerman

carol sorola

connie adams (my mother)

don adams (my stepfather)

Lois robinson

julie bray

cami conner

donna garrett

jeff simmons

lezli adams

terry rizen

bonnie rinks


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