AA Diet Info for SMA

Based on Families Experience

Testimonials

Thank you all for sharing your experiences with the AA diet!

Kaige

If it wasn’t for the AA diet I KNOW (not think ) my almost 9 year old son with type 1 would not have made it this far. We are long past the days of being dependant on 02 and high heart rate. My son thrives every day. Every change I made towards the AA diet, and every approved ingredient I’ve added has only made my son healthier and happier. He has beaten the odds and I know it is solely due to his diet! Thanks Mary Bodzo!

Leah

Leah was 14lbs at 18months of age. If not for the AA diet & the g-tube she would have starved to death. She tripled in size in one year and is now a very healthy 7yr old! We’re truly grateful to those who were leading the way before us, like Mary!

Charlie

Charlie went on the AA diet as soon as he stopped nursing. He is an amazing 8 year old who is as healthy as a horse. He bounces back from all of his back surgeries and is going strong. My only addition is that for him, adding breast milk was the final piece to the puzzle, since we had a hard time finding a good fat that worked for him. Thanks Mary, Jeanna, and Liz helping me perfect his diet.

Nathan

Nathan went on Pediatric Vivonex mixed with his breast milk at about 7 months, a couple of weeks after g-tube surgery. He is 27 months now and is doing fabulous. He has gained weight very steadily (around the 10% mark) and is growing like a weed. He is over 38″ tall! He was originally on BM + 1/2 packet of Pediatric Vivonex. At one year I reduced BM some and increased Pediatric Vivonex to 1 packet. At about 20 months, I switched him to Tolerex + BM. Nate has never had any tolerance issues, I just wanted to see if the lower fat formula would benefit him, since he was still receiving breast milk. After his fat % of calories was reduced he started moving even more than before! It has been 22 months since Nathan was diagnosed (type 1), and 18 months since beginning the ever evolving AA diet. Nathan has had some issues with plugs, but has never had an illness!

Aubriana

Jeanna Huette and Brad Fisher helped us get started on the AA diet, shortly after Aubriana’s first birthday. She is doing amazingly well. She is rarely sick and even our hospital dietician was impressed at how well the AA Diet was working for my daughter because she had never heard about it. My daughter is now almost 3 1/2 years old and thriving.

Sophia

Sophia was diagnosed at 7 weeks old and is a very, very weak type 1. She was on my breast milk only for her first 5 months and then after g tube surgery she was on breast milk and Pediatric Viivonex. We are so lucky that my husband found Jeanna L.Huette right after diagnosis and she has guided Sophia’s diet since the beginning. Sophia switched to Tolerex over a year ago and we noticed a decrease in secretions immediately, she also has moved a bit more as well….Sophia used bi-pap for the first 2 years and 3 months of her life and was trached last May. Sophia has NEVER been hospitalized for any respiratory infection or virus. Her first two years of life she may have had a tiny cold once. I believe that her AA diet has played a huge role in her good health.

Ford

Ford has type 1 SMA. He was dx at 4 months old and got his g-tube surgery at 5 months. He did not start the AA diet until he was 1 year old because Ford’s nutritionist said that they didn’t agree with it and that Ford needed the fat in his diet. Ford had a lot of trouble having bowel movements and was on both miralax and needed suppositories. Within days after starting the AA diet, I was able to take him completely off of miralax and the suppositories. He has remained healthy since starting the AA diet and I have seen him move a lot more. He has been slowly gaining weight on a steady basis. I think that the AA diet has been a huge factor in my sons thriving, in spite of having SMA.

Veronica

Veronica is a Type 1 child who started on the AA diet at around 14 months. She actually was doing okay on the diet she was on, but I wanted to do the absolute best for her and to give her the most opportunity to thrive, given the grim diagnosis she received at 5 months old. She is now 7.5 yrs. old and is strong and healthy. She has been hospitalized twice for respiratory illnesses in her years, but bounces back as strong and hearty as before. I strongly believe her success is due in a large part to the AA diet that Mary Bodzo helped me with all those years ago. The diet is a vital aspect of a Type 1 SMA child’s overall health, and when looking at those who have greatly surpassed their original diagnostic data, the diet is a common denominator in most all of them. Therefore, it needs to be taken seriously and given the prominence it so readily deserves.

Matthew

My two year old type 1/2 was throwing up Pediasure milk formula several times a night. He was not gaining weight, even on a 1300 calorie diet. He would wake up soaked in sweat. Since switching to the AA diet, those issues are resolved. He’s gaining, has more energy, lower heart rate, less junky, it’s an amazing change.

Autumn

Autumn is now 7 and has SMA type 2. She struggled to maintain her weight after I stopped nursing & was put on a vegetarian diet with Vivonex at age 2. Slowly she began gaining weight, was less lethargic, stopped sweating at night, and that funky yeasty smell that her body always seemed to have disappeared. At 3.5 we had a g- tube placed proactively because oral feeding was becoming all-consuming and affecting her quality of life. She remains a vegetarian, eats fairly well orally, and receives 1 1/3 packs of Vivonex with V8 Fusion juice through her g-tube. Autumn has never put herself into a sitting position, never crawled, scooted, stood up, or walked. But 6 weeks after surgery & the full-on AA diet, she stood up holding onto the couch with only leg braces & knee immobilizers. Today she can’t do that, but her blood work is always spot on, and she is growing & gaining weight steadily. Doctors who see my daughter are impressed with her continued good health–no hospitalizations except for the g-tube, and at age 7 she has only been on antibiotics twice in her entire life, and hasn’t missed school due to illness for a year and a half. This diet is THE KEY to Autumn’s good health. I would not consider feeding her anything else.

Stella

Stella is almost 5 and is a weak Type I, diagnosed at just one month of age. She was solely on breast milk for the first 5 months of her life and then the inexperienced nutritionist put her on Nestle Goodstart formula, which didn’t work well for her. She agreed to switch us to Elecare and then to Neocate. Because she was on VPA, she started gaining too much weight so we switched her to the Tolerex/breast milk mix and have been on that for 3.5 years. I am so thankful for the AA diet because I feel good in knowing that she’s not having a difficult time trying to break down her food, which gives her energy to do other things. At one month of age, she lost her abilities rapidly. However, she started maintaining quite well once she was on the right combination. Her doctors have always been very impressed that despite her early diagnosis, she has been able to breathe on her own most of the time until age 4 1/2 when scoliosis became an issue. I strongly believe that diet and respiratory management go hand-in-hand and contribute to longer lives in many cases (obviously there are other factors that take our kids’ lives). Over time, Stella has actually been able to do more, now moving her head from side to side, butterflying her legs again, and using her fingers to power her power chair. When she has been ill, she has bounced back very well! Thank you so much for those that have contributed to perfecting the diet!

Haley

Haley Hoover is 16 years old and was diagnosed at 4 1/2 months old as a Type 1. I started her on Tolerex when she was 8 months old. Her diet has been consistent over the years with various baby foods, juices, and supplements added in along the way. Haley has done very well on this diet, has maintained her ability to sit upright and drive her power wheelchair, has no scoliosis, and only requires bi-pap during sleep and illness. We attribute much of her excellent health and stability in strength to this diet.

Vivianna

Vivianna was diagnosed at 9 months. Prior to this, she was having some constipation problems, was gaining weight very slowly, and had a very yeasty smell. We met with a GI specialist shortly after diagnosis to discuss our concerns. Her solution was to increase our daughter’s fat and protein intake. The result of this was disastrous. Our daughter began sweating, looked very bloated, LOST weight, had very painful constipation, smelled and no longer looked healthy. Worst of all, she became extremely weak. Six weeks later we contacted Mary Bodzo and began the AA diet (tolerex, almond/rice milk, organic juices, fruits and veggies and various supplements). Within a week, the bloating was gone and by her first birthday she began gaining weight, had normal bowels, no longer smelled , slept better, looked healthy, and was so much stronger. If she caught a cold she was able to fight it off very quickly. She was able to sit independently, stand with support and regained the head control she appeared to lose. We also decided to have a g-tube placed proactively when our daughter was 20months old. We have never regretted the diet or the g-tube. She’s had one major illness (age 4) which resulted in a three week intubation. She continued to follow her diet, against the hospitals wishes, and was home back to normal in four weeks (using bipap at night only). Had I allowed a change in her diet at that time, increased fats and protein, the outcome may have been different, as the doctors told me she would not leave without a trach.

Now at the age of seven our daughter has remained stronger than anyone had anticipated. She is no longer able to stand or sit independently, but is healthy. Her labs are always perfect; she is growing and looks wonderful. The past six months have been very difficult as she has caught every illness her younger brother has brought home. BUT she has had the strength to overcome within days vs. weeks in the hospital, including a two week bout with RSV. She has not lost weight or strength during this time and her labs remained normal as well. Her pediatrician said it best today, “You are caring for her from the inside out. Nutrition will always be the key to her health.”

Braylin

Just getting started with the new diet. Just started the NanoVM today and Ubiquinol is on its way. Braylin (14months) is doing great with the diet and seems more playful/movement. Thanks Mary and Kristin.

Roman

Roman was put on the AA diet at 8 weeks old, Tolerex and BM. He was only 7 lbs and quickly started to gain weight! He is now almost 5 years old and is doing fabulously on this diet! Thank you ladies for pushing so hard for all of us!

Erinne

At age 4.5 yrs, Erinne was a very frail, emaciated 26lb/40in tall little girl. Very little information was available back in 2001/02 on the AA diet. Pediasure made her sickly and sweaty. I started her on the AA diet with the blessing of her pediatrician and Mary’s help. Just a short 22 mos later, I had a vibrant, healthy, hearty 56 lb/52 in tall young lady. That’s a gain of 30 lbs and 12 ins. in less than 2 years. Her pediatrician said it was all “catch up” growth. She is now almost 15 yrs old, (10+ yrs on the diet) 5’7″/116 lbs, still on the AA diet and never wants her tube taken out. The AA diet has improved her quality of life and made her healthier and stronger. She eats strictly for pleasure now — and that does not include veggies! The AA diet unequivocally saved her life.

Emma and Nick

When Emma was first losing her swallow at 8 months of age, the doctors put her on pedisure. Emma gained a lot of weight, was sweaty, puffy and lost a lot of strength, including strength behind her voice. She lost her ability to roll from side to side. When we started her on the AA diet she thinned out, she is not sweaty anymore and is now 11 years old. Her brother Nick was diagnosed with SMA after we switched Emma to the AA diet. After Nick stopped breast feeding we started him on the AA diet right away. He first took the mixture by bottle through the night and day and then switched to g-tube feedings. He has kept a lot more strength, never had to deal with the sweaty and puffiness. He is 9 years old and is a strong SMA type 1 with a very loud voice. Both kids have been very healthy on the SMA diet.

Aubrey

At 7-8 months when Aubrey was diagnosed she began losing her swallow and could not breast feed anymore. She was put on pediasure. She began losing strength, began to continually get sick, was sweaty, puffy and could no longer lift her legs to her belly. After being put on the AA diet she thrived and is still thriving and will be 10 in June!!! She has not lost ANY strength since being put on the AA diet, and is now GAINING STRENGTH!!

Cash

Since switching to the AA diet, my son has gained control of his secretions, gained strength throughout his body, and he has been able to steadily gain weight; an issue we had prior to initiation of the AA diet. 2 years old, SMA 1

Makenna

In June of last year Makenna got a cold and wasn’t able to sit up at all for 2 and 1/2 weeks! We started the AA diet shortly after. Since then Makenna has had one very minor illness and was only sick for 2 days. Since last summer she has also gained movement in her arms and legs and is doing things she wasn’t able to do before.

Gavin

At 18 mos., Gavin was switched to Pediasure Enteral from Enfamil lipil, which he’d been on since birth because he was getting too thin. He of course picked up weight with the Pediasure, VERY high in fat. We do not have Doctors or dietitians here educated on appropriate SMA protocols. This was years ago. Gavin will be 6yrs old next month and they still don’t follow protocol here. Gavin ended up bloated, sweaty and overweight on the Pediasure and was also on an unnecessary PPI, Prevacid. His calories were too high, digestion slow, and he was dehydrated. Since he’s been on the AA diet and stopped the Prevacid, he’s lost a great amount of bloating and excess weight, his skin looks better, he has more energy and has gained movement. He was only able to tap his fingers before but is now extending them as well!! The movement in his right thigh, (abductor muscle) has gotten stronger. His digestion is 100x’s better than ever and fluid intake is almost on target! Something that wouldn’t have been possible before. He’s improved so much with Mary, Kristin, Jeanna and a few others help and all who doubted what I was trying to do for Gavin are all impressed now! Therapists, Drs and teachers that see Gavin regularly are amazed at how he looks and has improved with movement.

Ella

After being hospitalized with RSV and pneumonia, Ella (20 months, type 2) was put on Pediasure via ng-tube. Within about a week, she started going downhill. She was losing energy and starting to sweat a lot more. By about two weeks after starting the Pediasure, she was so lethargic and sweating so much that we took her to the ER and she was admitted. The next day we started her on the Amino Acid diet (with instructions and guidance from Mary Bodzo). Within two days of starting the diet, her sweating stopped completely during the day and almost completely at night! Within five days, her energy levels were returning to what they were before starting the Pediasure! Her nutritionist is so excited to see the positive changes! Thank you Mary for helping us with this diet! I also want to add that after about one week of being on the aa diet, all of Ella’s therapist (she has three) said they’d noticed a difference in her energy level and abilities, being back to what they were prior to starting the pediasure.

Hayden

Hayden (type 1) has been on the AA Diet since she was nine months old. She has always been on breast milk(BM). When Hayden was 6 months old we added some formula to her BM to help with weight. She immediately was bloated and uncomfortable. Thanks to Jeanna who answered questions for me and helped calculate a diet for her. We started her with Tolerex along with her BM at nine months. Immediately her bloating went away. She has never had any respiratory colds or viruses and is doing very well. She’s 3 1/2 and has had only 2 heads colds in her life. I truly believe her good health is due to diet. Her body is not fighting and using energy to digest which allows her immune system to stay strong. She is growing like a weed. She is 3 1/2 and weighs 34 pounds and is 44 inches long. Thank you Mary for your work and creation of this diet. My daughter is alive and healthy because of you and Jeanna.

Zion

Before November 2011 Zion could crawl and sit unassisted, he got sick and Dr.’s suggested a g-tube and to start using Kids Essentials. He got worse. On Jan 9 we switched to the AA diet. In less than a week he could sit unassisted again and is crawling with knees lifted off the floor! He is actually better than before he got sick. The AA diet saved my sons life. No doubt about it.

Dani

My daughter Dani was diagnosed with SMA type 1 at the age of 7 months. She had a g-tube placed shortly thereafter. Dani was exclusively breast fed until 6 months and then was fed regular formula. The treating hospital would not switch Dani over to Tolerex (AA diet) until after her g-tube was placed and working. I was suctioning Dani every 15 minutes or so. She was very constipated, fussy, and sweaty. After starting Tolerex, her secretions dramatically decreased. I was then suctioning her maybe hourly, her bowels normalized; she became happier, stronger and more playful. Dani continues to follow an AA diet and has SMA type 1, and is 8 years old!

Kennedy

I switched Kennedy from a high fat elemental formula, Elecare, to Tolerex, donor breast milk, prune juice, and a variety of baby foods. Within days of starting the diet, her reflux had stopped. Her motility improved, her secretions decreased, and she had more movement – moving her head side to side more easily; more spontaneous leg movement; and even more resistance/power in her arms. Kennedy also started gaining weight on FEWER calories than she had been on with Elecare. Since being on the AA diet, she has also recovered from illness faster than before she started the diet and it has been far easier to manage her nutrition during illness.

Angel

When I switched Angel to the AA diet, she went from night to day, her movement improved, she had less secretions, her crying at meal times stopped, and I was able to increase her volume. Angel could never tolerate very much fluid, but with the AA diet, she could tolerate about 4-6 ounces more right from the beginning. She has been on the diet now for about 3 months and has done great, no more reflux, no more Prevacid, no more crying with meals, and she even wants to eat more by mouth,( she doesn’t eat, just tastes.) I’m just sorry that I put her through so much because I didn’t know and she suffered because of it.

Hannah and Olivia

In my opinion, as a mother of two children with SMA type 1, as well as having a background as an R.N., breast milk is the best food for all babies. However, if one has a child with SMA , an elemental amino acid formula such as Tolerex and/or Pediatric Vivonex is vital for the maintained health and well being of the individual. Chronic illness is prevented, infections, fevers and pneumonia are not as prevalent. The children grow and thrive. I have had experience in using Tolerex for the last 14 1/2 years with my oldest daughter. My only regret is that I did not begin using it earlier in her life when she was diagnosed at 5 months of age.

Lizzy

Lizzy has SMA Type 1. She has been on the AA diet since she turned 1 year old. Immediately after starting her on the AA diet, Lizzy had less secretions! I thought there was something wrong with her, but she was actually better than ever! Lizzy cannot tolerate a lot of baby foods or fat, so at 2 1/2 years old we started donor breast milk. Her overall health totally improved again within a few weeks after starting the donor breast milk.

Sophia

Sophia has type 1 SMA and is 7 years old. Sophia was on a lactose-free infant formula right after her g-tube was placed, until about 10-11 months. She had MAJOR issues with bloating and tummy upset. We switched to Tolerex and white grape juice after that and never looked back. We have also added in donor breast milk and she is doing even better.

Ella

After Ella was put on Pediasure 2 weeks ago, she went downhill FAST (no energy, sweating ALL the time for no reason, etc.). We’ve only been doing AA for two days and already she’s stopped sweating! It’s crazy!

Krista

Our daughter Krista has been on the AA diet for over 17 years. She is a very weak type 2, diagnosed at 8 months. She has never been back to the hospital during illness, and has remained stable and healthy since changing her diet.

Trevor

Trevor was diagnosed in May 2011 at 10 1/2 months old and we started the AA diet in late August of 2011. Right before we started the diet, Trevor was at the doctors at least 3 times in one month with a nasty cold we just could not get rid of. Since we have started the diet, Trevor has only been sick one time and we were able to clear the sickness with only 2-3 breathing treatments. I give full credit to the AA diet as to why Trevor has stayed healthy so far and is not only maintaining but even INCREASING in strength.

Ella P.

My daughter has SMA type 2 and would not gain weight despite doctors and nutritionists telling me to load her up on fat. We tried Pediasure, higher calories and fat, but nothing helped. She barely gained one pound in a whole year! We started the AA diet by mouth and then via g-tube. In 6 months on the AA diet she has gained almost 5 pounds. She is overall healthier, has more confidence in her movements, and no longer has problems with bowel movements.

Hunter

When Hunter first got his g-tube placed, he was put on Pediasure. He did well for about 3 months, but then he started getting back to back to back pneumonias and respiratory problems. We had reflux, tonsils, adenoids, etc. all looked into. We finally decided to change to the AA diet to see if that made a difference. Illnesses stopped and he’s doing great with the diet!! Gaining weight and staying healthy!!

Matthew V.

After discontinuing all dairy and soy for 16 days, Matthew age 14, SMA type 2, had a tremendous improvement in digestion. At this point, we started Vivonex TEN. We immediately started seeing even bigger improvements. Matthew’s swallow started getting stronger; his coloring improved, he started waking up two hours earlier in the mornings and his oxygen numbers improved by 2 – 3 numbers. He is no longer constipated. I wished I would have tried this diet a long time ago. I think Matthew wouldn’t have progressed in the last year and lost 16 lbs. He was on a high fat, mostly dairy diet for the last year on the advice of our nutritionist.

Max

After speaking with several SMA families who followed the AA diet, we began combining the AA formula with pureed foods and tolerated juices and oils. The difference was dramatic. We were able to completely discontinue his laxative and doubled his feeding rate. He had less bloating and secretions. Within one week of completely changing his diet ALL of his therapists (PT, OT, SLP) wanted to know what we were doing differently! Max had improved verbal communication, better head control, and more movement in his hands and feet. They had never seen a child with SMA “strengthen.” He also began sleeping better and had no more night sweats. I would have never believed it, if I hadn’t seen it for myself and had multiple professionals express their own observations of improvement.

Nicholas

Our son, Nicholas, had a g-tube placement in August 2010. At that time he was given a high-fat, high protein formula called Nutren Jr. For nearly a month, Nicholas suffered extreme stomach and intestinal issues, from cramping and bloating to constipation and vomiting. He was in nearly constant pain until we switched his high fat formula to an amino acid (AA) formula called Neocate Jr. We also added a regimen of juiced fruits and vegetables and vitamin supplements to help with digestion. Nicholas’s health really improved when we reduced and started diluting the Neocate Jr with water and adding a packet of Tolerex, which contains very little fat. The switch made a world of difference for our son, as he no longer has any gastrointestinal pain and is thriving on his healthy, easily digestible diet. The AA diet has also increased his limited strength and movement and made him a much happier child overall.

This website explains the accurate amino acid diet for spinal muscular atrophy patients. For over 17 years, this diet has been used successfully in many SMA patients.Those following this diet appropriately are typically healthier and stronger than others similarly affected by SMA. Because this diet hasn't been studied by medical professionals, it is often not properly prescribed. I believe this is a disservice to SMA families striving to access all available care options for their children. This website has been established with the hope that more families can understand how to safely and optimally use this diet. Any information contained here is based on the opinion and experience of many families.