Hi everyone! My six year old daughter has CACH, one of the more rare forms of Leukodystrophy. She has always had problems with digesting her formula. We had to place a Mic-key button when she was two. We went through several types of formula before we stopped with Vital Jr., but we still have to dilute it with Pedialyte for her to digest it. She has always had very loose stools, and recently they have gotten worse. She only weighs 26 lbs, of course she is tall, but she has been the same weight for almost two years now. I just don't feel like her Gastrologist seems to think this is a big deal. I am going to ask her Pediatrician to fing her another stomach doctor. But in the mean time if there is anyone that could give me any advice or suggest a new formula, I would be so grateful. I just don't know what else to do. Please Help!
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Digestion problems with Leukodystrophy (CACH)
- By lexismom
- Posted October 4, 2009 at 6:31 pm · 5 replies
- In Childhood ataxia with diffuse CNS hypomyelination (CACH or VWM)
- Shared with the public
Explore topics in this discussion:
5 replies
- Oldest first
- Newest first
- By armstrong
- Posted October 11, 2009 at 5:42 pm
- Report post
Hi I have a son with vanishing white matter, he has a j tube, he takes just vanilla pediasure on 60cc per hour 4 hrs. on and two off round the clock and he takes baclafen 20mg .three times a day clonazapam 1mg. three times daily and senna 2.5 for constipation sometimes I have to use a liquid glycerin suppositories because he gets constipated a lot . I hope I can help a little. If you like you can call me at 313-2213956. We are from Michigan. God bless you.
- By MBA28
- Posted October 12, 2009 at 9:31 am
- Report post
Our daughter was one of the first diagnosed at NIH as having CACH. She also had digestion problems and was both thin and weak despite being in her mid-twenties. A friend of ours who has MS told us about a company that had supplements that helped him so much that he was able to start driving again. We flew to TX to question the scientists who developed Ambrotose a product made by Mannatech. After being assured that there was nothing in the product that could harm her, we purchased some Ambrotose which almost immediately allowed her to digest her food. Their website is: https://www.mannatech.com/Default.aspx
- By NorasMom
- Posted October 12, 2009 at 5:06 pm
- Report post
Hello,
Our daughter, Nora, is 7 years old and has Metachromatic Leukodystrophy. Her g-tube was placed when she was 2.5 years old, and since then, she has been on a variety of formulas, including the Vital Jr., which worked well for her.
We had to change formulas when we changed medical supply companies, and she is now on a formula called Peptamen Junior, made by Nestle. We dilute her feeds with a little water, and she has been tolerating this new formula very well. Her vomiting has almost stopped completely.
Like your daughter, Nora was very slow to gain weight; maybe a pound a year from age 2.5 to 6.5. Since the formula change, she has gained about 5 pounds, and seems much more comfortable, happy, and otherwise looks much healthier.
Ask your doctor about the Peptamen Junior. It's a peptide-based elemental formula, meaning, it is broken down into smaller pieces (partially digested), and is much more gentle on children's digestive systems than typical formulas. It must be prescribed, so I bet your daughter's pediatrician could write a prescription for you; then you wouldn't have to visit the GI doctor. (We're actually having the same problems with our GI doctor, not seeming to care much about Nora's issues). Very sad.
I can totally relate to your dilemma!
Hope this helps,
-Patty
(Nora, 7)
Cleveland, OH
- By mommyloveswyatt
- Posted October 22, 2009 at 10:54 pm
- Report post
My son has weight gaining problems as well, and just had his Gtube placement done. They put him on pediasure, its a 30 calorie per ounce formula (premixed) and is also delivered to our house from the pharmacy. I would give it a try if you havent already tried it, my son has really bulked up since we started.. so were actually having to dilute it. The one my son gets is actually a soy formula as well. They come in 8 ounce cans (like a soda pop can), so its really easy to travel with and take along.
- By NorasMom
- Posted November 14, 2009 at 10:24 pm
- Report post
Lexi's Mom,
Did you find a formula that's working out for your daughter? You sounded so desperate; just wondering if you've found a solution...
-Patty
(Nora, 7, MLD)
Cleveland, OH
Add to the discussion