Amino Acid Diet

Jay-We tried it for 6 months last winter with Jordan (13 yrs type II).  We did not do the eliminate all proteins thing, because he's a type II and Bach said they haven't seen that as very beneficial for type II's (only type I's).  So he prescribed keeping the same diet (since Jordan eats pretty well) and started 2 pack/day supplement.  However, we noticed he only gained weight and thus had less mobility.  Backed it down to 1 pack daily (1/2 pack 2x) and his weight balanced better, and it was easier to get it into him because the stuff tastes awful.  I can honestly say I don't think there was any strength improvement at all, but we did see a dramatic reduction in night sweats, he seemed to have less secretions, and didn't really get sick all winter.  When he got a little sick, it seemed as though the recovery was quicker.  I think there may be some benefits, so we're considering giving it a shot again.  However, I'm skeptical about any strength improvements in type II's and would want to see some data before I believe it makes them stronger because we definitely didn't see it and he said he didn't notice any difference.  In fact, he begged us to stop giving it to him.  However, I have heard there are some strength benefits for type I's, however. 

Brenda Brames- Starting the amino acid diet: This is something that you are going to have to do on your own. I can give you suggestions, but these are things I have had to come up with from Crystal’s interests. When Crystal first started on the diet, I would have someone watch the kids and I would go to the grocery store and walk up every aisle grabbing any foods that I thought Crystal might like or does like and just read the ingredients listed on the labels. You would need to watch for the dairy allergens, like I said before, which are: milk, buttermilk, non-fat dry milk (or anything that contains the word milk in it), butter (or anything that contains the word butter in it), cream (any kind of cream is made creamy by milk), whey, caseinate, sodium caseinate, lactose (or anything with the letters lact in it).

It was like a nightmare. I spent hours upon hours searching for food that she would eat and I wasted a lot of food to, because I tried so many things. Crystal does not like any vegetables and few fruits. She really only would eat noodles with spaghetti sauce or margarine, but she did like the veggie dogs. I was worried they would cause her problems so I started out only giving her one every third day, so I was far from filling her tummy. I found plenty of snack type foods that she could have: crackers, chips (plain), popcorn (with margarin), raisins, fruit bars, even some animal crackers are milk free, all fruits and vegetables (including baby foods), peanut butter and jelly, pretzels, potato sticks, and you mentioned he likes french fries which are fine, and there are lots and lots of dry cereals they can have. I even tried mixing the rice milk with Hershey’s chocolate syrup or even Nestle’s strawberry syrup. However, I don’t make such an issue out of getting her to drink another form of milk, pediatric vivonex or Tolerex supplements her needs of vitamins and minerals. You may need to have the doctor give them a prescription for calcium and vitamin D though; when we figured the RDAs on those they were insufficient. Don’t let them talk you into not worrying about the Vitamin D, because the body only produces Vitamin D when we are exposed to sun light and since we keep our kids in out of the weather, they need a supplement for this, because calcium WILL NOT work without the help of Vitamin D. The important thing on drinks is that they get a good amount of fluid in them, which you can supply them with anything: water, juicy juice, Kool-aid…Fluid is necessary for hydration just like it is in even normal children. Fluid helps with blood circulation. Good blood circulation is important because this is how everything is transported to where it needs to go in the body, not just oxygen, but also the release of carbon dioxide. In addition, nutrients are passed through the blood. Whatever the body needs, usually the blood takes it there. The more fluid in the blood the faster it circulates.

I had to come up with some really crazy ideas to get Crystal to eat. Like the ketchup sandwich, stripping pizza of the toppings, I even stripped raviolis of the sauce and the meat inside and just served her the noodles. I had to do the same thing with finding the right mixture for her Tolerex. I played and changed it and tried new things all the time until I finally got a remedy that works real well.

I was instructed by Stephanie and Mary in the beginning not to overload crystal with the aminos.  I understood them to say that it will be quite an adjustment for her and that i should take it slow.  Like up the dose every other week and make careful observations to her physical abilities along with secretions because at some point you will be giving your child as much as they can take.  TOO MUCH IS TOXIC, NOT ENOUGH CAN CAUSE FASTING!  Crystal has been on the diet for a year and a half now and I finally (a month ago) got her up to 1 3/4 packets during a 24-hour period.  I had to back down back to 1 1/2 packets a down because I noticed side effects like she began showing weakness in areas she had been at her strongest and her secretions were thicker and increased in volume, were harder to manage.  Since I dropped back down to 1 1/2 packets, she has just blossomed and is doing better than she has ever done in her life!!!  I have also never heard of any child taking more than 2 packets in a 24-hour period.

I do not know that it matters how much water:juice you use, but i start out with the Tolerex powder and as little water that I can get away with and the Tolerex still dissolve okay and then i add the rest of the fluid content with juicy juice for calories and to help with crystal's bowel movements and I haven't "noticed" any problems with it.  In fact, since her NG tube, i haven't been flavoring her Tolerex and i took the juice out mixing it only with water forgetting all the reasons besides flavoring that i had it in there in the first place, but anyway now crystal's bowels are moving slower and i am using prunes more often.  I will be putting the juice back in to see if that helps.  I agree that the diet should be followed a certain way or it can cause more harm than good and at the very least stop the child from benefitting as much as they could.

In the beginning, I started out with just the Tolerex (would be the same as the pediatric vivonex), calcium and vitamin D, and a multivitamin.

1.I mixed only half a packet with only 2 oz of water.
2.I then filled the bottle up to eight oz.
3.I crushed her multivitamin and vitamin D pill into powder.
4. I added calcium (which is liquid), Vitamin D, and multivitamin to her eight oz bottle and shook real well. (Now I add 2 tablespoons of Jello to this as well. This is what made Crystal finally stop fighting me over taking her aminos.
5.I then divided that amount evenly between two bottles.
6.And filled both bottles up to 9 oz and shook bottles well again.

Since all the SMA children have their own tolerance level no one could tell me how much to give her. So I felt I started at the very bottom at a level I felt safe wouldn't be too much for her. I also decided it would be best since she couldn't store any of the amino acids for later use, to only give her what she would use within a couple of hours. So I divided the total of both bottles (18 oz) by six doses a day served evenly every three hours. 6:30 am, 9:30 am, 12:30 pm, 3:30 pm, 6:30 pm, and 9:30 pm.

Now again, no doctor or no dietician is going to be able to tell you exactly what you child needs, you are going to have to experiment with it. Keep their formula the same for an entire month of them showing consistency with it. (as in no problems) When you feel comfortable that they tolerate the amounts of amino's, then up the level some like maybe to 3/4 a packet. But no matter what supplement you read about and believe they need and decide to add to the formula, only add one change per month, so if they do experience problems you will know exactly ingredient has caused this and you can either adjust the dosage or take them off. Whichever you feel is best for them.

Now, almost a year later: (Please do not use this remedy to start out with)
I mix these items the same way:
1. 1 1/4 packet of Tolerex
2. 10 oz of juicy juice (makes two 7 oz bottles)
3. 225 mg of glutamine  
4. 1 amino 75 capsule
5. 1/10 of teaspoon of creatine
6. 1/2 multivitamin
7. 1/2 vitamin D capsule
8. 4 juice+ capsules
9. 3 mg of calcium
10. 2 tablespoons of jello

Today: 06/21/04 - Crystal's protocol has changed quite a bit...On February 25th, judge ordered for the removal of my youngest three children from my home (the complete story is and instead of asking me regarding Crystal's care, the Office of Family and Children of Vanderburgh County chose to take Crystal to Riley Hospital in Indianapolis Indiana for a random guess of physician visits.  They took her to doctors who had never seen her before and she was taken without anyone representing her that knew anything about SMA.  The results were many harmful adjustments!  One of the worst was taking her off the Tolerex diet/protocol that she had been on and slapping her on a "Blow Up Like A Blimp" weight gaining diet that included solely Six Cans of Pediasure in a 24-hour period (5 cans through the night while she slept and 1 can during the day).  Finally, after a bunch of BS...the case was transferred to a new caseworker and a new judge and things have began to change, rather quickly...I recieved no notice, but that is okay...I was told to go to St. Mary's Hospital, where Crystal again was being admitted, this time for a rash on her back, which was the result of "poop" that had gone in her Spica cast!!!  ~OMG~  I was told to go to her and not leave until she was discharged from the hospital, and at that time, she would return home to me.  Regarding the diet and after Crystal had 10 pounds slapped on her in less than 3 months, these are the differences I noted in Crystal from 06/08/04 until now...

*To make the list short, Crystal is now severely malnourished, weak, and fat!!!  I do not have any evidence that her muscle mass has changed however; her weakness specifically may be directly related to the excessive weight gain and amounts of Pediasure given to her!!

*New Email -  Feel free to contact me with any questions; however, I by far cannot teach this diet.  I can only stand tall to what I have seen it do or not do for my daughter through the years she has been on it and now her recent experience off of it!

Nadine- Tolerex & vivonex have 'free-form' amino acids Vs. Neocate has 'synthetic' amino acids. In addition, probably Neocate has less fat also. The difference is that free forms are better absorbed by the body. When we were transitioning and trying to get on vivonex we had Jarred on Neocate, while it was better than pediasure etc. it was NOT the same as when he was on vivonex. I wouldn't compare the two formulas. Tolerex & vivonex pediatric are the only ones we know that work.

I also wanted to add, it helps to keep informed yourself. Grab the nutrition almanac and read read read. I know some people aren't geared that way, but I would be careful & know your child. Every child will be different and tolerate some things and not others. Also, I NEVER rely solely on the doctors or our nutritionist for info. We have one who is very supportive & has great ideas, but in the end they will continue to say that he should have more vivonex, more protein and more fat, I'm also convinced they're working for the dairy industry or at least get kickbacks. It is a very careful balance to fine-tune our children's diets and we have all had to work up to it as well as continuously adjust it. I guess I wanted to add that yes, some people are misinformed about the diet. When we started one of the first moms I spoke with was Stephanie. I've also talked with Mary. I also caution against buying commercialized supplements also. I always buy the good stuff you can find in a health food store with pure ingredients. You must read labels and be wary of the contents of products you give your child. Remember, a lot of tube fed children do not get anything like what we give our kids, because they are fed from cans and nothing else, except maybe meds. So the med. People are clueless about using real foods and a well rounded diet, they are more interested in fat/weight gain in my experience.

Kristal - As far as the vivonex/ Tolerex- I would request a blender. Almost all nutritionists want to give them way too many packets. When Brett was in the hospital here- I had my mom mix me a supply and bring it every day. We kept it in the fridge- and as I got him to drink it- I would dump out the one they made- They wouldn't "allow" me to make my own- so I just tricked them!!!!! Even though they said they made it to my specifications- I seriously doubt that they did! We try to stay away from dairy products because they thicken secretions, which can cause excess congestion.

Amy Barnett- I make a day formula and a night formula.  All of Lily's vitamins and supplements go into the day formula, the baby food etc.  How I do it is this...I start by putting the Tolerex in the blender with the juice and water.  I mix (duh) then I pour the amount that I use in the night feeding in a small jug and put in the fridge.  Then I begin adding all the other stuff: vitamins, baby food, oil's, etc...mix and put into a larger container for her.  It is really easy and it keeps things simple for us.  That way I have eliminated the clogging that I used to get while feeding her at night with all the food etc. in it.  In addition, I have eliminated the yucky stuff that is all over the bag at night (you know the vitamins etc. that cling to the sides of the feeding bags) and I am assured that she is getting all of her vitamins and stuff. She gets all her calories etc. but it just makes it easier for both of us.

This is a scary thing for ALL of us who took that leap BUT I haven't talked to a mom yet who has not seen great results from doing the diet.  It is all very basic and easy once you learn it and do it.  Lily is a huge example for what this diet has done for her (I mean she is going to be 2 in May, is big and healthy, and her Pediatrician. talks about how GREAT she looks).  One of the reason's I am firm believer in ALL the things I do for Lily is that I look at the people who have children who are older then Lily...are they healthy?  Are they happy?  YES YES and YES!  My gosh, if I was to listen to the doctors from the beginning I would be missing my daughter right now...when I searched for families who had kids with SMA I found the ones who KNEW what they were doing, talked to them, and wanted to copy them exactly when what they were doing...why?  Because their kids were outliving the diagnosis...not only outliving but THRIVING to boot.  I started with bipap, cough machine, g-tube, then the diet...I have found these families were right!  Lily is a happy, healthy almost 20 month old baby thanks first of all to God who directed me then to all the families who so willingly helped me along the way.  I take the medical crap with a grain of salt...sure we need doctors and thank God we have them but HOW MANY KIDS HAVE THEY HELPED WHO HAVE SMA TYPE 1?  I found very few, and most of the doctors I know told me the speech...will not live past 2.  Then I looked at the families who balked the doctors and found a way for their beautiful children to LIVE and THRIVE.  Is it a cure...NO, but I want Lily to be comfortable and live a healthy life to the best of her ability.
       Now...with the diet deal...YOU have to be the one to do it.  You will not find a doctor, nurse, pediatrician, or nutritionist to support this no matter HOW much information you take to them.  If this is something that you cannot or will not do that is up to you but I am telling you now that if you take all the information to them they will number 1...tell you no way or number 2 put him on way to many amino acids...they do not get it.  There have not been studies enough for them because our kids DO NOT LIVE.  And the ones who do live are not enough to make it a consensus.  YOU have to be the one to do it...only you.  YOU have to decide if this is what you want for your child.  I would love to tell you that you have to do it or they will get so much stronger etc. but I can't tell you that.  While Lily has certainly benefited from the diet, bipap, cough machine etc....she still has SMA which is a terrible disease.  Until there is a cure and a miracle she will not walk etc...BUT it is my job to make her life as great as I can and to me that is what I am doing but you have to make the choices with this. I do not take Lily in to get her blood analyzed (when she was in the hospital in April they did it because they didn't like her diet, but when tested everything was normal and fine) but it is all very basic.  All you really need is a Nutritional Almanac to figure it is RDA for kids.  The other stuff if fairly easy OR there are plenty of people who will help you to figure out what Steven needs as far as the Amino Acids, Vitamins, etc....We are all willing to help out in so many ways. I am not trying to sound mean (I hope you don't take this that way) but really this isn't that hard.....and it is WAY better then regular formula.  There are a lot of things about our kiddo's that make things a little more difficult but the results of doing all this stuff are amazing!  I cannot brag or boast enough about my little girl who has beaten the odds, and is doing amazing!  She is the light of my life!  I know this will not cure her but I am doing the best I can to ensure her the best life possible and that is what being a mommy is all about.

Susan- I give Leo his Vivonex throughout the day. He generally doesn't have it with meals, but it he asks for it, I give it to him. Leo still gets the night sweats sometimes, but it is probably because he does eat some dairy still. For night feedings we give Leo a bottle with his Vivonex mixture so he can eat through the night - and that bottle is always empty in the morning! Seems to work for him.

Michelle- My niece Madison type 1 was on the infant formula Pregestimil from age 1 - 3.5 years old.  We went to the St Louis fsma conference and Mary Bodzo was there.  She was talking about the diet in this type 1 session and I turned around and told her whom i was.  She said she had extra Tolerex and would give up some.  Anyway when we got back home my sister just put Madison on the diet - now she had talked to many doctors before this giving them E-mails - etc.  with grave doubt from them all.  Anyway - once we started Madison her first week - she had no nightly sweating, her heat rate decreased and her respiration rate also decreased.  She was not belly breathing as forceful as she did, she started have more wet diapers (from 4 a day to 15 a day) which meant she was retaining fluids and her kidney function was hampered - she also had urinary tract infections twice a year now she has had none.  Her hair started getting longer and thicker, her color in her face was pinkish and healthy, her feet we could never see her toes as her feet we always swollen, she was rarely sick with any stomach virus.

We have pictures of Madison on her site from age 2 - 5.  At age 2 and 3 she is very pudgy - lots of water retention at 4 and know 5 she is a lean, mean, fighting machine.  The pictures tell it all.  We have a video where her mom is holding her (mom has a microphone on as it was our video for our fundraiser) you can hear every breath Madison was taking and see her whole torso area expand heavily with each breath.  Now we hardly see her fight for her breathes or even hear them.

We just did it - put her on it.  Type 2s who can still eat - should be using the Tolerex as a supplement not their major food source like a type 1.  As a supplement, you would use it like a snack or a mid meal.  It will give them the extra energy they will need throughout the day.  It would be better for them than say chips or even crackers with peanut butter on it.  They will have more energy, strength and be more alert - If you need to know what amino acids can do, try for yourself. The following product, Myloplex Lite, which you can get at GNC or any of those places (get the lite as it tastes better) mix it with double the amount of water add a banana (as it helps with the taste) add some ice and mix it up in a blender ---- drink it twice a day for a week.  See how you feel.  Aminos go directly into the cells of our body they will fire up our body to start producing the energy we lose from the crappie foods we eat.

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