feed.aversion, allergic colitis, MSPI, neocate

[Anonymous]

i would love some suggestions or success stories, i feel i am at my wits end. my ds, 4 months, was diagnosed with silent reflux and MSPI at 2 months. since then he has developed a bad feeding aversion and has blood in his stools. the GI changed him to neocate a week ago (tried soy and then alimentum for 6 weeks) but so far it doesnt seem to help him. we did it cold turkey because of the allergic colitis, but now i am wondering if it would have helped more to slowly introduce it to his system? he is eating less- around 20oz. he used to take only 15-20, and then we got him up to 22-28, now back down a little. feeding aversion is horrible most days and it takes me all day to get him to eat- he usually eats better just as he is falling asleep but even that is not working lately. GI said he has allergic colitis from the milk allergy and wants to do an endoscopy if things dont improve by first week in february. does anyone have a similar story or some ideas for help? the pediatrician suggested putting sugar in each bottle to help with taste so we tried- but now i am thinking i should ask the GI about that first since he has allergies, etc. also- the GI doesnt think the slient reflux is whats causing his pain or problems, more the allergy. he is on 7.5mg prevacid once a day. he’s been on it for about 5 weeks. thank you for reading and helping out. i really need it!!!

[Anonymous]

I’m so sorry you’re going through this. It is VERY difficult to see your little one in so much discomfort!

I can’t help too much w/ the feeding aversion as my DD had only a slight feeding aversion and only in certain settings (i.e.-at my computer desk she would *SCREAM* when I put her into feeding posion).

DD also had/has MSPI but at 3 months I dumped the formula circus and soley BF. The Dr’s had me trying Enfamil AR, Soy, Allimentum, Nutrimagen and even Good Start. All of that from birth up to 3 months. Finally I said no more and just kept BFing and some symptoms went down.

At 4 months though you can’t do that, maybe the sudden switch is causing his little GI system to be more irritated. I never got to Neocate as my Insurance did not cover it but all the others I listed above, everytime we switched she had more symptoms.

What kind of bottles do you use? I went through every brand on the market, literally. It made all the difference in the world when I started using Dr. Browns wide mouth. DD refused the skinny bottles as the nipples were so thin.

How does he sleep at night for you? Does he eat better at night? DD did after about 5-6 months. Thank goodness.

[Anonymous]

i would definitely do the scope if things don’t improve—they can sure be alot of help when it comes to seeing what is going on inside.

[Anonymous]

My guess is that the problem is more about the low dose of Prevacid than it is the formula. Probably he wasn’t too thrilled with the taste at first, but the feeding aversion will only worsen if he is in pain from the acid. Check out http://www.marci-kids.com for great info on proper doses of PPI’s. One dose a day will NOT cover him for 24 hours. Their metabolisms are just too fast for that, so marci kids really reccommends giving the meds at least 2 times a day. Actually, they suggest 3 times.

[Anonymous]

marchseptember wrote: i would love some suggestions or success stories, i feel i am at my wits end. my ds, 4 months, was diagnosed with silent reflux and MSPI at 2 months. since then he has developed a bad feeding aversion and has blood in his stools. the GI changed him to neocate a week ago (tried soy and then alimentum for 6 weeks) but so far it doesnt seem to help him. we did it cold turkey because of the allergic colitis, but now i am wondering if it would have helped more to slowly introduce it to his system? he is eating less- around 20oz. he used to take only 15-20, and then we got him up to 22-28, now back down a little. feeding aversion is horrible most days and it takes me all day to get him to eat- he usually eats better just as he is falling asleep but even that is not working lately. GI said he has allergic colitis from the milk allergy and wants to do an endoscopy if things dont improve by first week in february. does anyone have a similar story or some ideas for help? the pediatrician suggested putting sugar in each bottle to help with taste so we tried- but now i am thinking i should ask the GI about that first since he has allergies, etc. also- the GI doesnt think the slient reflux is whats causing his pain or problems, more the allergy. he is on 7.5mg prevacid once a day. he’s been on it for about 5 weeks. thank you for reading and helping out. i really need it!!!

what tests did they use to diagnose the reflux and mspi?

i really empathize and sympathize with what you’re going through. i agree that the ppi dose seems low. when we first got dd on zegerid, we were giving her a comparable dose once daily, and it literally did nothing for her at all. has your lo ever taken zantac? you may want to try dosing him with some zantac along with the ppi, or better yet, speak with your doctor about the dose and the possibility of upping it..marinaew2009-01-31 23:44:14

[Anonymous]

my ds has had the upper GI and an ultrasound to check for pyloric stenosis (spelling?). both looked fine. yes- we are definitely going to get the dosage of prevacid increased when we see the GI doc on tuesday. i’m pretty sure he now wants to do an endoscopy-upper and lower- since he told us at our last visit if there was not much improvement we would be scheduling one. i’ll post on tuesday how his appointment goes.

[Anonymous]

First I would like to say I totally understand what you are going through with the feeding aversion.

my daughter is 5mths (she was 5 weeks premature) and has always given me problems to eat. She was diagnosed a month after screaming and crying when presented a bottle with reflux, pedi use to say she had colic. I think that month did a lot of damage to her. Because now she cries when i give her the bottle she is on Prevacid 2x daily, Reglan 3x daily and I tried cherry mylanta 1ml 2x daily. the first 3 doses of mylanta helped and she drank with no problem but like with everything else it only lasts for a moment and she resorts back. i get her to eat when she is sleepy or alseep. Pedi told me to try to add strawberry nesquick but that didnt help. I think somehow these reflux babies have it embeeded in their little brains so that some of them nothing works or helps. I am desperate because i go through this daily and every feed. Last night she went almost 9 hours without drinking, i tried 3 bottles in between and she refused.

[Anonymous]

She had the tests done to check for the pyloric stenosis, upper GI, endoscopy and they all came back normal. Sometimes I had hoped they would find a problem then fix it. So then we are back to square one, She has a appt with speech therapy tomorrow so I will let you know how that goes. She is currently on Enfamil lacto free, but she has tried many many others, I think in my daughter’s case and your baby it is not the formula. My baby also has silent reflux she gets hiccups alot, wet burps which freak her out. She rarely vomits but when she does it terrifies her. She gets so bad that when she sees the bottle she starts turning her head and screamig. It is so hard emotionally for me. She doesnt even take a bottle from my hubby which i know hurts him but he keeps trying. soemtimes she would go hours without eating then I would cluster feed her when she starts taking. For example after a warm bath I would give her 3 oz then in an hour I would give her 2oz. Sometimes this works maybe you could try it. For our babies with aversion it is very important that they take at least a minimum amt daily Her’s has been at least 20oz. Ask your GI if maybe introducing microlipids to the formula (if weight gain ever becomes an issue) my baby is in the 14 percentile but she was in the 5. be very careful with the aversion it makes me panic because in Nov she had vomitted and it scared her so that she didnt drink at all she was admitted to the hospital for dehydration, Is your baby teething, has a cold, or constipated? these three makes the reflux act up and intensifies the aversion in them,

[Anonymous]

I wish I had a success story to share with you but I hope you take some sort of comfort in that you are not alone. I constantly try like you thorughout the day to get her to eat. My daughter also has a 3rd degree heart block and had her PDA valve in her heart closed in November. Doc said if that didnt close she would have gone into heart failure. Cardiologist says she has to eat and gain weight because she still has a hole at the top of her heart that needs to close. So it doesnt help at all that she has reflux. Here are some things that I have tried and researched maybe something might help but consult your pedi first of course:

elevated her crib mattress and form like a horse shoe with a blanket so that her legs are in the curve part. you may have to pin the blanket down to the crib sheet then place a receiving blanket to cover the whole thing. really helped with her sleep.

strawberry nesquick 1/2 tsp per 3oz

cherry mylanta 1ml 10 minutes before bottle up to 3x day

try different temp of milk mine mostly likes it warmed

swaddling really helps with feeding I think it relaxes her and comforts her also she cant throw her arms or swat the bottle away.

try cluster feed after a bath or when he is sleepy. instead of 3-4 hours at these times try 2-3 ithen in an hour try 2-3 again. (their stomachs have the capacity to take it but my daughter just doesnt want it.

try to play with him before feeding to kinda tire him a little. do tummy time, show toys, coo just play with him. this works some days

also if very gassy i use to give 1-2 oz chammomile tea sweetened with a little brown sugar. i know sounds crazy but pedi recommended says it calms their tummies.

alot of this sounds unconventional and not normal but given my daughter medical condition i have done extensive research and verified all these with her pedi, cardiologist and GI. I dont just take one of their words no i run it by all of them before i tried it. also dont try more than one thing cause then you dont know what worked. also does your son use a pacifier, sometimes tricking him by letting him suck the paci then sneaking the bottle in they are comforted by the paci then introducing the bottle sometimes work.

i try to stay sane because it is a difficult thing but I hope every day she will get better. the best therapy is to talk to other moms that have been thorugh or going through. for me at least. i hope something helps and your liitle boy feels better. hang in there.

[Anonymous]

OMG, I could’ve written this post. My DD has all of the above. At 8 1/2 months, we are still battling with the feeding aversions. On a good day, she’ll drink 12 ounces of formula and have three meals of solids (~1/2 a jar at a time). On a bad day, I could spend the whole day feeding her with little yield.

Have you considered feeding therapy? Most children’s hospitals have feeding clinics and you can also contact early intervention to see if you can get an eval done.

Wendy

[Anonymous]

We had feeding issues since birth and got really bad by 2 months of age.

At 8 months my dd got a feeding tube and we started feeding therapy.

Two years later she is eating orally and LIKING FOOD!.

We did go through a food elimination process (she had many food intolerances) and she was on a very restricted diet for a while.

Could your LO have food issues or maybe he is still having reflux pain? i will check into those first, then feeding therapy.

It is tough, but it gets better. Hang in there.

[Author]

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