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EAT => Food Allergies => Topic started by: JoHo on January 01, 2008, 17:58:06 pm

Title: Gastrointestinal issue--looking for mom's who've seen this?
Post by: JoHo on January 01, 2008, 17:58:06 pm
My dd has been dealing with what we can only believe is a gastrointestinal issue since she was 3-4 weeks old. She is now 15 weeks old.

We have been seeing a GI doctor for six weeks. We have tried switching from regular formula to soy to Nutrimigen to Neocate. This week, we are back to trying Nutrimigen only because objectively, the problem of the milk intolerance is gone (her stool shows no sign of blood under the microscope.) And the gas on the Neocate seemed worse than on other formulas so we thought we'd try to go to the Nutrimigen just to see if that would help the gas issue, and perhaps make her more comfortable.

Her symptoms are this: she cries/ screams at random times, often in the evening and at no set time (like you'd expect from colic.)  Often in the daytime she "melts down" too. The things that might comfort her  but don't always do the trick are walking, shh, pacifier, getting her to stand (engaging the leg muscles), and putting her on her tummy. She does kick her legs when these melt downs occur, which is a main reason why we believe it is gastrointestinal. 

She sounds like she's pushing and struggling even when she isn't passing a BM. It's heart wrenching!

The GI doctor has had her on reflux medication since mid October (over 8 weeks). First it was Zantac and then it was the dissolving Prevacid (which often didn't dissolve completely and got caught in the bottle) and now we're on liquid Prevacid (3 days.)

If after two weeks she is not better (and I don't really expect her to be) they will scope her. That scares me a lot because of putting her under anesthesia. We don't know what else to do though!

The odd thing is, she sleeps fine at night. We can actually lay her on her back, swaddled, and she is almost always fine from about 10:30pm, then the middle of the night feeding at 3am, then until 7 am. She starts to "flare" after 9am.

Has anyone else seen these seemingly random symptoms?
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: yaya on January 01, 2008, 19:26:14 pm
bumping this up for you
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: Zoey on January 01, 2008, 21:29:33 pm
Hello I'm sorry your baby is having a difficult time.  One thing jumped out at me about your post...

"We have been seeing a GI doctor for six weeks. We have tried switching from regular formula to soy to Nutrimigen to Neocate. This week, we are back to trying Nutrimigen only because objectively, the problem of the milk intolerance is gone (her stool shows no sign of blood under the microscope.)"

I'm reading your post as - she had blood in her stool, went on Neocate and now does not have blood in her stool.  If she has an intolerance to milk/soy protein, and you give Neocate, naturally there isn't going to be blood in the stool anymore.  This is because you eliminated the problem - the milk/soy proteins or lactose - by giving Neocate.  This is how I understand it anyhow. ;)

Blood/mucous in stool can be caused by inflammation and irritation of the intestinal lining.  These irritations can be caused by an intolerance to milk/soy proteins - where the body sees these proteins as foreign substances OR lactose intolerance where the body is lacking enough of an enzyme (lactase) to break down a milk sugar, leaving it to ferment in the lower intestine cause severe gas (which is extremely painful and fleeting).  If she is  having problems with her lower end, having a lot of gas, gas pains, bloating of her tummy, loose stool or constipation - it may be she has a lactose intolerance.

All of that said (sorry I tend to go on and go) Nutramigen is hypo-allergenic, lactose and sucrose free - so aside from Neocate or Elecare - it's one of the better ones to try if you do not know what the issue really is because the milk proteins are broken down a bunch and it doesn't contain lactose.

Are you using a bottle to decrease the amount of air baby takes in during feeding?  Dr browns are expensive but really worked wonders for us.  Have you tried using Mylicon drops right before all of her feedings?   How are you giving the Prevacid, how often, when in relation to food?

I hope this helps a little.  Feel free to ask questions, there are a lot of Mums here that have gone through or are going through this stuff and can help.

How are her BM's??

Zoey
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: Jimbob on January 02, 2008, 17:54:07 pm
I agree with the previous post regarding the neocate. If your lo had blood in her poo before the neocate then it is probably due to this formula that it cleared. Zoey has also given some great information.

Kelly
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: JoHo on January 02, 2008, 21:51:17 pm
So what we're waiting to see is if her system stays clear of the blood even on Nutrimigen. The doctor thought it might, and that the neocate was just more "aggressive" in clearing it up since it's even more broken down (pre-digested is a term he uses.)
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: 3Ps on January 03, 2008, 17:54:09 pm
JoHo, my LO had very similar symptoms, plus the blood in the stool.  We could not figure out what it was for a long time (was it teething, etc., you name it, we thought of it), until the blood in the stool came and her pediatrician thought it was MSPI, which then led to me trying the elimination diet (I was still breastfeeding then), then tried Nutramigen and felt it made everything worse (my understanding is that it still has milk proteins in it, although further broken down, and that some babies still react to that because of how sensitive their stomachs are - it's not as hypoallergenic as Neocate - thanks to the ladies on this forum who have educated me!), and when we got extremely bloody diapers one day even after all that, went cold turkey on Neocate, and EVERYTHING has stopped since then.  Her GI specialist was actually surprised at how quickly it worked (in 3 days) and he confirmed that it was some kind of protein intolerance, whether it's milk, soy or anything else is sort of up in the air and hard to detect until she gets older, and I imagine we'll figure out through introducing different solids.  She is still on Ranitidine.  Like I said, my LO reacted very well to the Neocate so she has not had the gas issues like yours does, although she was very constipated for awhile in the beginning but that's been resolved now and she goes very regularly.  My understanding from a dietitician with my GI specialist is that sometimes it takes awhile for the baby to get used to the Neocate (in our case, the constipation) so perhaps that's what your LO is going through?  Just a guess.  Good luck with this!  I know how heart wrenching and draining and exhausting all of this can be.  It's really hard to watch your baby go through this and wonder whether or not you'll ever get to enjoy them being happy.           
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: Jimbob on January 03, 2008, 19:39:39 pm
Neocate does not contain any milk protein it is completely dairy free. It is an amino acid based formula. Nutramigen is a hypoallergenic formula but is still dairy based but has been hydrolysed which means the proteins are brokendown making them easier to digest. James got lots of wind and very odd fowl smelling nappies when he first went on neocate. James does still get some wind but not as much and the poo looks better now but it still smells terrible. Some of James's issues with his poo were down to allergies with other foods though. I hope you get to baseline soon and it all gets figured out. It is horrible watching your lo suffer.

My only worry is that if there was blood present in the stool when your lo was on nutramigen before and it went whilst on neocate then I would think that the odds were high that it will return now back on nutramigen. However I am not a doctor and I am only going from personal experience with my ds and reading others experiences with their lo's. I hope I am wrong and that all goes well on the nutramigen.

Kelly
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: JoHo on January 04, 2008, 00:12:18 am
OK, that is interesting, Kelly! I was wondering about that. The doctor figured it was worth a shot but wasn't sure what the outcome would be.
Any idea how long it took for James to "acclimate" to Neocate? Zara was on it for a full month when we switched back to Nutrimigen. She's been on it almost a week now--she doesn't seem any worse yet. A week from now we'll check her stool again blood.
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: fitfamily on January 04, 2008, 04:46:38 am
JOHo, You've recieved some great replies.  I can only add that my ds (now 14m) was MSPI and I was breastfeeding.  He was an extreme case that fell into the small 8% of MPI babies that do react to the broken down milk proteins in Nutramigen and Infamil's hypo formula too.  I decided to clean my diet up NO dairy or soy.  I read every label.  Staying away from packaged foods made it simple.  I feel for you and your daughter.  It is such a rough time.  Keep us posted.
Ashley
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: Jimbob on January 04, 2008, 07:33:07 am
James took about 6-7 weeks before the gas reduced really. James's eczema improved before then but the gas and consistency of the poo definately took a while. I would have doubted that it was working if it was not for the fact that James's eczema was improving.

Kelly
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: motherof3 on January 05, 2008, 01:33:11 am
Abby was also on Neocate.  It does take time for their system to get used to it.  Abby did get constipated from it and had to go on Lactulose.  But we were eventually able to wean her off the Lacutlose. 

Also, you said that Zara was on Prevacid solutabs.  Abby has been on these since 6wks.  It is nearly impossible to give these via a bottle or syringe (that is for them to get the full dose).  It should be given on an empty stomach and 30mins before eating.  The pill doesn't dissolve completely.  We give Abby her on a baby spoon broken up with a little bit of water.  Now if she is on the compouned Prevacid you have to make sure that it is compouned correctly or it will become unstable and useless.  Here is a link on how it should be compounded...http://www.infantreflux.org/forum/forum_posts.asp?TID=4505

I also highly recommend the website www.reflux.org.  There are so many great moms on there that are full of advice.  We all have experienced so much and are a great support.

Andrea
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: JoHo on January 05, 2008, 01:40:12 am
Walgreens pharmacy is doing it--I wouldn't know how it's done, but I'm assuming the pharmacy does it correctly, or is that a gross assumption?
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: motherof3 on January 05, 2008, 02:41:40 am
I wouldn't assume.  I have heard that you have to get it at a compounding pharmacy to have it done correctly.   I would def ask them. 
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: JoHo on January 05, 2008, 02:42:26 am
Zara is back on the Neocate as of today. We tried her on the Nutrimigen for the past week, just to see if her system could handle it. But there is blood in the stool after the week on Nutrimigen, so Neocate it is! Maybe the gas will subside as "Jimbob's" DS, James', did after 6-7 weeks. I suppose we may be back to square one with getting her system used to it again, but at least I know that what I'm feeding her won't be causing any real problems with the milk allergy.
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: JoHo on January 05, 2008, 02:42:58 am
Will do--thanks for the heads up.
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: motherof3 on January 05, 2008, 02:45:12 am
Okay, so I see the link for the compounding info didn't come through.  Let me try again http://www.infantreflux.org/forum/forum_posts.asp?TID=4505
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: Jimbob on January 05, 2008, 08:02:59 am
I had not checked the other link but this one seems to work fine. That forum is actually very good, full of knowledgable people.
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: Zoey on January 05, 2008, 13:02:06 pm
That is an awesome message board, full of very helpful info.  They offered wonderful support when Owen was suffering w/ reflux.
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: Mom to M&M on January 05, 2008, 17:08:49 pm
Yup - I always recommend them too - they were a big help with M's flux!
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: birdie on January 07, 2008, 00:55:29 am
I wanted to add that DS is gassy (actually expelled) when he is constipated. We add 1 tsp of MiraLax to every other bottle of Neocate to help keep in regular. He does not seem to pass as much gas when he is pooping regularly.

Good luck,
Wendy
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: Jimbob on January 07, 2008, 12:14:35 pm
How is Zara doing on the nutramigen? I hope its still going well for her.

Kelly
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: JoHo on January 07, 2008, 21:28:01 pm
We actually had her stool tested again on Friday and there was blood in it again after one week on Nutrimigen (from being on Neocate four weeks prior to that), so we're back to Neocate for the long haul.

Thanks for asking!
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: Jimbob on January 08, 2008, 19:31:29 pm
I am sorry to hear that. I hope the neocate works well and if she has lots of gas again it settles down after a while.

Kelly
Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: JoHo on January 08, 2008, 22:16:01 pm
Oh the Neocate is already helping, I think. It was worth a try to see if some of the pain or discomfort might have been alleviated but we caught the return of the blood pretty quickly and I think that element of the pain is already getting better.

Title: Re: Gastrointestinal issue--looking for mom's who've seen this?
Post by: Jimbob on January 09, 2008, 09:54:30 am
That is good to hear.

Kelly