Seeking Advice on Childeren with MSPI

There's a web site that might help you. It's called webmd.com. I've gotten tones of information from it. just type in the disorder and read the treatment for it. Hope it helps.

M.,
I apologize,but I do not know what MSPI is. I had a daughter (she is 2 now) who was diagnosed with "infantile anerexia" when she was 6 mon. old. They call it that because they could not find any reason why she wouldn't eat. I too had to find various ways to increase her calories each day. My daughter was treated at the Cincinnati Childrens Hosptial by their feeding team - they have an entire department dedicated to feeding issues. They gave me a powder supplement that I would sprinkle on her food and add to her milk (pumped breast milk) to help her gain weight. If you can get the baby to drink formula, there is a way to mix the formula to increase the calories - your doctor can let you know the proper mix. As she has gotten older, the issue for us has improved. She is happy and we try not make eating an issue. At one year she was 16 pounds and now at 2 1/2 she is up to 22 pounds. She does not have any medical conditions as it sounds like your child does. Good luck.

Did your Dr. talk to you about stopping BFing? My daughter had MSPI also and my ped told me to stop bfing and just feed her formula (alimentum). She gain a lot of weight after switching. She wasn't small to begin with. Her height was off the chart but her weight was 75% but after switching her weight is up to the 90%. She is 8 month old now and is 29.5 in and weights almost 22lbs!!!
It was really hard for me to quit and I wouldn't if you're not ready...but it is an option to think about. Like my dr. said...Breastmilk is best MOST of the time...but not all of the time.
Good luck to you!

You can get Neocate formula here now, its expensive but if your doctor thinks its good, they'll prescribe it. My best friends son uses it.

In my experience as a pediatric nurse working with NICU babies at a major Children's hospital, I have never heard a doctor suggest a mother increase her own caloric intake in order to increase the calories in breastmilk. I would question your doctors on this theory - perhaps there is new research evidence that I have not read yet, but previous research has supported that a mother's caloric intake does not really affect the amount of calories in her breastmilk. Caloric intake/types of food consumed may affect the quality of the milk, but not the quantity of calories over an average day. One resource for you to check out is http://www.kellymom.com/nutrition/milk/change-milkfat.html

Overall, if you are willing to consider options such as pumping and feeding a bottle for some of your daughter's feedings, there are many more options than just trying to get her to eat another jar of baby food - - i.e. human milk fortifiers (yes, even milk and soy free) added to the expressed milk, adding tolerated formula (possibly neocate or alimentum) to cereal, foods, etc.

If your doctor is truly concerned about your daughter's growth yet is unwilling to discuss multiple options with you, I'd suggest getting a second opinion from another pediatrician!

Good Luck!

All 5 of my babies had MSPI as well. Fortunately, we didn't have the too small problem, they were all quite squishy.

My only thought for you is since you can't add butter (usually what doctors suggest, but is dairy), is to use sweet potatos for the food (the starch should help). She probably is just going to be a petite girl anyway, but how scary if she seems just way too little (and if the doctor is concerned). I have a friend who's little girl weighed 16 pounds at her 1 year check, and she's perfectly healthy, just petite. Good luck.

Try mixing a little butter into her jarred veggies/meats and a little suger into her jarred fruits. Offer her only the breastmilk to drink no water or juice. I undestand your battle I have been trying to get my oldest to gain for 9 years she was 10 pounds at 12 months and is barely 45 at 9 years.

when my baby was a baby she was a premie and didnt eat much either but i started mixing extra food in with her milk and her cereal and it helped her gain a few extra pounds i hope this helps you

Hello! I don't know much about your baby's problem, but my son was a 26 week preemie with a ileostomy, who was failure to thrive and could not gain weight. My milk never came in so that was a dead end for us. He was about 8-10 pounds on his first birthday.
The thing that saved his life was a formula imported from Liverpool, England called Neocate. It's made for babies with major problems. A regular pediatrician probably would not prescribe it, but a specialist would know about it. It is very expensive but WIC paid for it for us. He was on it until he was almost 2. You can read about it on the Internet, and you will see offers to buy it from individuals, but it's a felony because it has to be used under supervision, so please don't go that route, although I know first hand how you may be desperate for it. I've also read about something called MCG powder and oil you can get through prescription for gaining weight, and there's Pedisure too. If it is feasable, I recommend the team at Cincinnati Children's Hospital Medical Center. They are wonderful people. Good luck and please keep us posted! I believe you caan Google "Neocate Formula" and find info. I think it's made from a company called SMH but I'm not sure about that part. It's wonderful stuff!!

BTW, my son drinks goat milk now, and does horrible with dairy. He has gained 7 pounds the past year. He was finally healthy enough to have the ostomy reversed. Has your doctor recommended supplementing your breast milk with Alimentum, Enfamil AR (used mainly for reflux, but the added rice may help with weight) or a Enfacare 22??

I have never dealt with MSPI but my son is 6 months old & I just increased his intake of food to 3 jars a day (by recommendation of the ped.) because he was premature & is tiny. But he still eats the same amount of formula each day!!! They wanted me to decrease some of his formula but he wont let the bottles go lol Have you tried maybe in between the feedings of milk to give some food?? Good luck!! I hope u figure something out.

Oh & I had to look MSPI up lol It is milk soy protein intolerance right?

If you're in Lincoln, MilkWorks is the best resource. There are several moms of MSPI babies who work there. As far as the food, make sure you nurse first, then offer the food an hour or so later. She'll more than likely be hungry enough for the food that way, but still take in the same amount of breastmilk.

My daughter outgrew her MSPI at about 6 months, but before that, I made sure to eat plenty of protein and drink tons of water. If you're concerned about your supply, you might try taking 4 fenugreek 4 times a day or asking your dr. for a prescription for Reglan.

Try giving her yogurt and see if she can tolerate it. I prefer YoBaby yogurt by Stoneyfield Farms (it's whole milk yogurt instead of skim like Yoplait). Also, avocado is nice and fattening and natural. It tastes better to them with some mashed banana and breastmilk mixed in.

My daughter is 14 months and not gaining weight either. She's in the 4th percentile of weight at our last appointment. When she nursed, she'd get distracted by any and everything, including her big sister. So, we went to a bottle, and she still had very little interest in eating. We introduced food, and she ate more than her big sister, but still not much.

Now, at 14 months, she doesn't want any jar food, or to be fed. And, she doesn't want to sit down and eat. And she doen't even want to eat a cracker on the run. She has no interest.

Our doctor said that all in all, she's busy and otherwise healthy, and that it's better to be thin than fat, so I'm justs going to let her tell us what she wants.

I am looking forward to reading the other posts to see if anyone has any pointers.

good luck!
-B.

Try pumping your breast milk and fortifying it (add 1 tsp of formula per ounce) to increase the calories. I did that with my premie girl. Keep in mind too that little girls are much lighter than boys. I know she has a reason, but my experience was so different with my boy and girl. He weighed at 7 months what she she weighs at almost two. I also added cereal to her baby jar food to give her extra calories. You can mix it in and not even add water. It just makes it thicker. Good luck! A.

My son had MSPI until he was almost 3. We saw a dr in Omaha but after he hospitalized my son and put him on TPN because of the forumla intolerances and failure to gain weight, we decided to look for another GI doc. I didn't breastfed so I can't offer any advice there. My son went thru every forumla but after 4 months of the TPN (which gives total gut rest) he was able to tolerate Neocate forumla. He was on that until he was 2 and then we SLLLOOOWWLY made the switch to almond milk, rice milk lactaid milk and we stayed there forever. We just recently got him to 2% milk with little problems as long as he doesn't drink a ton in a day.

Good luck, it is such a rough road to be on.