Please Help. Silent Reflux or Milk Intolerance?

[Anonymous]

Sorry if this is going to be long, but I want to make sure that I don’t leave anything out. I did post about the Neocate formula and gave a little history, but I really wanted to see what other mothers with experience think could be going on (just from your experience) and I want to make sure I am armed with all the info. I need when I go to the GI specl. on Monday. So any advice there will be nice.

I have read a lot of Info. on the message boards, but I really just wanted to hear from other Mothers and get your advice and option.

My son Tyler is now 6 weeks old. He was born at 36.5 weeks and weighed 5 lbs. 14 oz. He was perfect, no health problems.

I planned on breastfeeding, but he was having latching problems and they said to supplement with formula to get his weight up.

So in the hospital he was given Enfamil Gentlease formula (they did this because my 2 year old had MSPI).

We were told to transition him to Nestle Good Start when we got home though.

So day 3 at home, we did good start. When he was 5 days old we went to the Ped. for a weight check and he had lost a little more weight and he was SO CONSTIPATED, the doctor had to clean him out. At this time we had the hardest time keeping him awake to eat, so he was not eating alot. She said he had to drink more and that was the reason he was constipated. She actually said she has never seen an infant so constipated 🙁

That same day, my breastmilk finally came in, but we were still having latching problems, so I pumped and gave to him in a bottle. He has terrible gas and crying from pain.

9 days old took in for another weight check and his weight was back to birth weight.

The next 5 days was awful. He was very gassy, mucus in his poop and had diaherra. I stopped breastmilk to see if that was causing it and switched over to Lactose Free. That made him so constipated that at his 2 week check-up he had to be cleaned out again and there was blood in his poop (doctor says from a tear).

So next we went to Ready to Feed Alimentum. He was still very very gassy, grunting, straining, groaning, arching back, screaming, crying, cannot sleep longer than 1 1/2 hours at a time. He was on that for 3 days.

At 3 1/2 weeks old, the doctor said to try Enfamil Gentlease again. It is made for babies with gas. His bowel movements became normal looking, but smelled like rotten eggs and he still had such bad gas and very smelly. Still not sleeping, arching back, kicking legs straight out and wanted to eat NON STOP. Almost every hour. He was drinking about 40 oz. formula a day.

Last Thursday I took him to see a different doctor. His weight was 9 lbs. 1 oz. He had gained 56 oz. in 3 weeks and should have only gained 21 oz. She said he is drinking WAY TO MUCH and this is causing his stomach issues.

So we started on Nutramigen and AXID for reflux. The gas did seem a little better and did not smell, but still the constant grunting, straining. He is just not comfortable at all. He gets really red in the face and crys out in pain. He never spits up though, very very rarely. You can here him spit up and swallow it back down though.

It is like he is constipated, but has soft bowel movements.

So Tuesday. we had an Upper GI done (Barium Swallow). It showed a perfect stomach ananomy and very mild reflux.

It is like clock work though, 1.5 hours after he eats he is is such pain. He wakes up gruting and straining and then passes gas and then crys 🙁

So the GI doctor told us that we had to really have him not eating so much. We were told to feed him 4 oz. every 4 hours. But he wants to eat every 1.5 to 2 hours. He will suck the heck out of a pacifier, like he is dieing.

So now, started today, we are trying Neocate. He has had 6 bottles and no improvement, but I know it want happen over night.

So we have a GI appt. on Monday. I want to make sure I have everything I need, so any advice at all..

We need HELP.. Her has not sleep longer than 1.5 hours day or night.

My first son was MSPI and had silent reflux (found out later), he was never this bad though. I thought he was bad.. He could handle Nutramigen. He also never had as much gas.

Has anyone experienced the same thing??????

Thank you so much, Wendy

[Anonymous]

Sorry, I meant to add lastnight we gave him a suppository because he seemed so constipated. It was only in there for not even a minute and he shot it back out with a diaper FULL of nothing but mucus. I called the nurse on call and she said it was just the suppository. That does not make sense because it did not even melt.

Then tonight he pooped (with my help) and it had mucus in it.

[Anonymous]

Sounds like MSPI to me. We had mucous in our poop until we started solids. We are still on Nutramigen and I am planning on switching to Gentelease in the next several weeks around 9 months or so. You need to give the formula change at least 2 weeks to know if it is going to work, it can take that long for the offending proteins to clear his system. Also he may need a PPI like prevacid to see good results. Best of Luck.

[hellbennt]

every switch takes about 2 weeks to see if it’s working- it’s really hard…all the ‘experimenting’

sounds like mspi to me, what with the mucous and the gas

From Debbie Frost; Wed, 25 Jan 2006 08:05:13 -0700 > 1) what is the biological/physical/scientific explanation for the
> connection between food
> allergies and reflux?

The body has difficulty digesting or tolerating the food for whatever
reason, so it is essentially treated the same way the body would treat
a non-food substance or poison – back up the way it came so that it
can’t affect the rest of the digestive system.

> 2) what’s the connection between gas and reflux?

Gas is created when something isn’t digested properly; for example,
beans are generally harder to digest than other foods, which is why
they are notorious for causing gas in most people (they are generally
not a common problem with breastfed babies through mom’s milk, though;
this is just a common example to help make sense.)

Also, gas puts pressure on the esophageal sphincter (the muscle at the
top of the stomach that helps move and keep things down), making it
easier for whatever is in the stomach to be refluxed.

[Anonymous]

I agree with Beth, sounds like an intolerance. I would also give Neocate longer to work. We switched to several different formulas with my daughter and it did seem like it took awhile for the previous formula to get out of her system. Neocate has done wonders for her though, so hopefully it will help your little one too. The arching, kicking, and not sleeping sounds like reflux to me. Our daughter did the same thing (not sleeping, etc.) until we put her on Prevacid. Good luck!

[Anonymous]

Hi Wendy,

I’m so sorry you’re going through this. I’ve had two refluxers also, with my second son being much worse than my first.

In response to your question, silent reflux or milk intolerance, I would just say to consider the possibility that it’s BOTH. Both of my sons have had protein intolerances plus reflux.

I’ll share what I’ve learned with my second son Nathan who’s now 5 months old, and hopefully it will help you. He had many of the same symptoms you mention — excess gas, grunting, straining, arching back while feeding, smelly gas — and all of these things went away when I started the total elimination diet (breastfeeding). So in our case, all of these symptoms were due to what I’ve come to realize is multiple food protein intolerance (MFPI). I would think Neocate should help with those symptoms since I think it’s the formula equivalent of TED breastmilk….somebody please correct me if I’m wrong.

However, even while I was still on the very strict basic TED, Nathan still had lots of trouble sleeping. He would basically only nap for one sleep cycle at a time (20-30 minutes in those early days), then wake up screaming in pain. He would be up til midnight or later crying and then finally crash. Other symptoms included sucking his pacy like his life depended on it and also extreme twisting/arching his back between feedings (Sandifer’s symptoms). These symptoms, in our case, are caused by plain old reflux (GERD), which I think is due to an immature valve in the esophagus that opens when it shouldn’t to let stomach contents flow back up and burn. I think that’s why some reflux babies suck their pacy’s so hard….trying to get something to soothe their burning throats 🙁

Anyway, these latter symptoms did not go away until we got Nathan on a HIGH dose of Prevacid (30 mg). We went through Zantac and Axid with little/no improvement. Then we started on Prevacid at 7.5 mg, then 15, then 22.5 — and we did not have a happy baby til 30 mg. Even now, he sometimes has bad days, but it’s much more manageable. We use Zantac in between Prevacid doses to help because Nathan’s reflux is so bad. By the way, have you checked out http://www.marci-kids.com yet? It has very good info about PPI drugs like Prevacid, which your little guy might need.

Don’t give up!!! You’re definitely on the right track, and you seem to know a LOT more than I did at that stage of the game. If I were you, I’d try Neocate for a couple of weeks, and if he’s still having trouble, go for a PPI like Prevacid, then get the dose as high as he needs it.

Hope this helps you. Good luck on Monday!! Please let us know how it goes.

[Anonymous]

I went through THE EXACT SAME THING – except he had bloody diarhhea. He went on 21 mg of prevacid (weight dependent – calculate on the PPI dosage) and Elecare – for about 3.5 months and that did it. He is meds free and on reg ualr formula now for the last 3 months. He no longer has feeding issues! So hang in there – it gets better!

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