Corby-TPN:  I think is pretty good for a short period of time. It’s all the vitamins and nutrition he will need. However, I always try to get him back on regular feedings as soon as possible.

Tine-JUICING: Right now I use the Green Star juicer. This juicer first grinds the produce up and then extracts the juice. It only goes at 110 rpm and thus doesn't heat the juice up. That way all the live enzymes are retained. In addition, because it first grinds the produce it retains more minerals and that is exactly what you want! It gives a very high quality juice.  At first, I used the Juiceman 2, but the motor quickly burnt up when I started using it throughout the day. Then I had an Omega 1000, which was better than the Juiceman but both of them are centrifugal juicers and spin at a much higher rpm (heating up the juice and losing a lot of life force from the juice). The Green Star is more expensive when you initially buy it but you save a lot on produce because you get more juice from fewer vegetables. So actually, it works out evenly. In addition, I find that the clean up of the Green Star is a breeze compared to the Juiceman and Omega. That is important when you use it a lot.

I changed Gilly's diet about 3 1/2 months ago to only juicing and blending organic foods and vegetables and I've seen many improvements in her since then. Respiratory wise she is doing excellent. I can hear her cry now whereas before I only saw tears coming. She is able to move her hands, wrists, and feet again!

Whatever juicer you are going to use, it will be very beneficial. Just replace the water and juice that they get already with fresh vegetable and fruit juices. Give them the easier tasting juices first to let them get used to them first. Carrot with apple tastes good, orange and actually all fruit juices taste good. They really need the vegetables though. So, take it easy as not to turn them away. You can also give them the vegetable juices through their tube and let them sip the fruit juices by mouth. That will probably work out better.

Brenda Brames-I chose a different route to the juicing thing.  I am with all of you 100% on the importance of fresh fruits and vegetables, but unfortunately I do not agree that today’s fresh fruits and vegetables are all they great as they are full of chemicals and such anywhere from pesticides to preservatives.

Luckily, over a year and a half ago at the same time I first learned about all the enzymes and vitamins that we were missing each day from eating canned veggies and fruits and how using a juicer would offer Crystal the most benefit out of them, my Mom shared her insight on it.  She is a very strong distributor of the NSA's products of filtration systems and a wonderful supplement called Juice+.  Juice+ is capsules that have been condensed from organic fresh fruits and vegetables.  You can take 4 capsules a day and get way more benefits than if you try to eat all that the nutrition charts tell you too, plus you get to dodge all the added chemicals.  She is a nutrition nut even beyond NSA products.  Crystal has been taking them for over a year now, and well, she is doing very well.  It is not the type of treatment that will show obvious results, but long term you can see how healthy you are.  I see it in Crystal.  In fact, as far as Acidophilus is concerned, I am a true believer in that, but I do not give her an Acidophilus supplement any more because the acidophilus that is in Juice+ handles Crystal's needs just the same but plus all the other benefits of the Juice+ capsules.  They also come in gummies for kids and they mix right on in the amino acid formula I mix up for Crystal.  Anyone interested in more details, check out my mom's Juice+ website.  The cost is $40 for a month's supply, but they do have an awesome research program where you can sign up a child who is over the age of 6 and get his capsules for free.  I started out saying my 11-year-old was taking them so it would lower the cost down to $20 a month and then I gave all the capsules to Crystal but after seeing Crystal's immune system grow and her overall health, I actually give my 11-year-old his capsules now.  He once had asthmatic bronchitis where he had to be on an inhaler every month for a few weeks or so, and he has now gone several months without needing his inhaler in fact he hasn't even had the slightest flare up.

  It is my belief to forget about all the worries of proper development in the eating field, because the diet limits what they can have so much that they need some relief too. I insist Crystal takes her amino formula with all of her supplements in it and I make sure that her fluid intake stays at a decent level and then after that I do the best I can to provide anything that she will enjoy eating and let her make the decision. I still give Crystal some of her favorite baby foods because that is an easy way to help keep her calorie count up. But I never force her to eat for her calorie count. Doctor says as long as she is growing and gaining weight he wouldn’t worry about it. And she does grow, and she gains weight just maybe an ounce between each visit. I even give Crystal a baby bottle with filtered water in it to go to bed with and she has been broke off the bottle since she was a year old.

  Jennifer Eastham-Sea Silver: Courtney takes it every day and it does wonders for her call this # and order her some its 1800-299-8256 it contains no caffeine and it does a body good and it taste like cranberry its really good I take it too and it gives me energy that I don't have it all natural its wonderful.

Nadine- SMA children are not be able to recuperate fully until they get some fluids & sustenance in them.  In the very least they should have an NG tube.. If their body is in a weakened state, the ulcers might persist because of that (the viral nature).  Get an NG tube fast. Hang in there, and fight for your baby no matter what. Don’t let them sway you.

Julie (Rocky Mountain Chapter)- It's very difficult to find those who will bend the rules and actually listen to the parents. I do want to add.. my 8 year old daughter handles stress via food (or shall I say ... doesn't eat).  She was the Colorado MDA Ambassador & Little Miss Wheelchair Colorado (all of them happened out of the blue -- we never placed her into a contest, the pageant organizer saw Jamie and basically bestowed this honor on her on a whim --- at the Ms. Colorado pageant) August of 2001 was a very busy MDA and pageant time.  Because of that, last year came with tons-of-stress!  Jamie decided her butterflies in her tummy were nausea and began hiding food, vitamins, you name it!.  She actually started throwing up because of the hunger pains mixed with anxiety.  We would try everything to get her to eat and/or drink.  Chocolate Slim Fast actually works (sometimes).  However, she would only drink 1/4 cup at a time.  On our little skinny SMA kids ... that does some major devastation.  Jamie lost 4lbs in about 10 days. By Early October 2001, Jamie slowly came around and began eating regularly. She still has bouts of anxiety.  She did the same thing at the FSMA conference this past summer.   In September, she encountered anxiety due to 2nd grade and a new class, etc. We were in Utah for the FSMA MUNE study.  Adam Craner & Dr. Swoboda put her on an IV and hallelujah she was saved.  (This is the 2nd time she had an IV because of dehydration in the last 2 years) After experiencing Jamie's many no-eating phases, we've discovered that a chemical imbalance occurs.  This makes them think un-clearly and no matter what you say to them, they don't understand that food and drink is going to help them.  While we were begging her to drink, Jamie always would look at us or seem to look right through us with a stern straight face.  Within an hour of Jamie being on an IV ... you can even ask those doctors at Primary Children's in SLC, UT ... it made a world of difference in Jamie's alertness and attitude.

Just a note for you.. not to worry you because I'm sure this has already crossed your mind Sept 2001.  Jamie was a walker.. note the WAS.  By February 2002, she could not even stand on her own independently.  I realize some of that is the disease ... but I firmly believe those no eating bouts sped up the process.. after all, when you don't feed your body, where does it get its fuel ... Muscles!   Our kids don't regenerate them like the rest of the world!

Kristal- Brett was on breast milk for 2 months, then Enfamil until he was one. He only had whole milk for a couple months, and then we switched to soy milk. I found out that soy wasn't good for Brett after about 3-4 months then gradually switched to rice milk. He loves chocolate milk, so I would add Hershey syrup to rice milk to get him used to the consistency. Then we just have used it ever since. You have to "test" different kinds- some are yuckier than others.

Sallie-Unfortunately, I don't think that you will find any further information about how to feed an SMA child who has an abnormal fatty acid metabolism at a nutrition class. The information is still relatively new and not yet
widely known among many doctors and nutritionists. A nutrition class will tell you what optimum levels are for a child without SMA. In addition, they will recommend much higher fat, calorie and protein content than is good for an
SMA child. Many parents of stronger children feel that their child is doing just fine on a standard diet. My granddaughter has Type 1 and there are many Type 1 families that have found the amino acid based diet to be a lifesaver and to truly help our children to be as strong as they can possibly be. If I had a strong child and this information came to me, I would be very excited. I think that you would be amazed at the difference in your child if you were to start to feed them according to the guidelines that Mary Bodzo has laid out. (The lady who found the study on abnormal fatty acid metabolism and developed the diet that works so well for so many of us) I think that
someone sent you information from Hannah Price's web page; she follows the diet that Mary developed.

For all types:
Dr Swoboda’s B-Vitamin recommendations for SMA

“B-50 Complex                      1 Tab
Thiamine  (B1)                      50 mg
Riboflavin  (B2)                    50 mg
Niacin   (B2)                         50 mg  
B6                                        50 mg
Folate                                   0.4 mg
B12                                       250 mcg
Biotin                                     0.05 mg
Pantothenic acid                  50 mg

Take once daily for patients less than 10 kg or 22 lbs.
Take twice daily for patients weighing more than 10 kg or 22 lbs.

Our view on Sodium Butyrate is this. It is a very very short acting drug. It is only effective in the blood stream for about 5 minutes after absorption. It has shown some positive effects on sma on lab studies, but is not a real practical medication to give. The only way to give it effectively due to its short duration of activity is to give it in the form of a continuous drip such as a continuous tube feeding. This is an impractical option for most patients. We have one mom who does just that but their situation is different from most of our patients. Hope that helps, Adam Craner.

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