Severe GERD/milk allergy - on Elecare now

Chandley

Hello - I hope I am in the right place? This is long, but I was curious if anyone else out there can relate.

DD is 11 weeks old this week. Since week one, she wouldn?t go to sleep unless she was being held. The doctor thinks it is because of the pain she was in. The only way we would get sleep is by bringing her in our bed and we would have to hold her to sleep. The minute we would try moving her to her cradle or crib she would wake up and freak out again. We didn?t want to be a co-sleeping family (no offense to anyone who is ? it just isn?t for us in the long term), but this was the only way we were getting any rest. She would cry non-stop all day and all night, and go into full tantrums where she would stop breathing and turned purple from screaming so much. She would fling her arms and legs around while arching her back and then balling up. It was really really scary. That?s when we discovered that she may have the acid reflux condition.

For three weeks of acid reflux medicating (Zantac and Prilosec) and x-raying (the Pedi wanted to make sure her intestines were not pushed to the side and were developed ? thank goodness they are OK), things improved a little, but not much. Something still wasn?t right with her. We went back to the Pedi again and she thought that it might also be a milk protein issue. For 5 days, DD was on a Nutramigen formula diet as a trial. DD was breastfed before then, but Pedi thought it could be my diet causing the reaction, and it would take two weeks to get the milk proteins out of my body to continue breastfeeding.

Once we started the Nutramigen, DD started sleeping on her own in her crib in her room on for two weeks or so. To this day she still does no real napping during the day.

After the trial was over, I was told that based on the reaction to the hypoallergenic formula that there was possibly milk protein sensitivity. I was told that I could either cut all dairy out of my diet, or stay on the Nutramigen. She was reacting fine to the formula, and after much internal debate I decided to keep her on it. She was thriving with it, and I was really worried about accidentally eating something with whey or other milk proteins. 
 
Then three weeks ago blood in the diapers started happening as well as the continued spit up and occasional projectile vomiting, and that is when the Pedi (along with us) decided to be more aggressive, DD had an upper GI. The upper GI confirmed that she does have severe reflux, so we have changed RX on that once again to Previcid. Hopefully this antacid will finally work on her as the other two didn?t.

The mystery was still what is causing the bloody diapers (we have had five total over the last two weeks) as well as the non-stop crying/tantrums. DD had an ultrasound as well to see if it was Intussusception was going on ? which the results came back negative. That is good, as a telescoping intestine could require surgery and can lead to other problems; but it still doesn?t tell us what is going on.

Finally last week we got into a GI Specialist who again has switched food, this time to Elecare. Its amino acid based - with no soy and no milk whatsoever. We've seen a little improvement, but nothing to write home about just yet.

Have any of y'all been on Elecare? How long does it take to work? Her poops look very watery - and we have still seen one bloody poop. She also still has about one projectile vomit per day. Is this normal on Elecare? Is her body still getting rid of the milk proteins?

Anyway, I didn?t mean to talk your ear off. If you made it this far with reading then thank you.  

 

 

Mbitner

My LO has GERD and milk protein allergy.  He has been on zantac (1.5ml twice a day) and prevacid (30mg/day).  He has been on nutramigen since 2 months old.  LO just started having more reflux problems- so we are going to be repeating another impedance probe to see how controlled his reflux is. We also just did a sleep study that showed apnea (he constantly wakes up at night which may be caused by apnea)....the apnea may or may not be due to reflux.  Have you all done an impedance probe to see if the GERD is controlled with meds?  Sorry you are having such a hard time!  I hope you can get some quick results!  Sorry I dont have any advice.  

Chandley

we haven't done an impedance probe - we go back to the gi specialist next week for a follow up. i wonder if he will suggest one then?

Mbitner

Chandley:

we haven't done an impedance probe - we go back to the gi specialist next week for a follow up. i wonder if he will suggest one then?

the reason we first did ours was bc the ENT surgeon wanted to make sure Aiden's reflux was under control before we did the surgery to repair his laryngeal cleft.  at the time it showed acid reflux under control, but not his non-acidic reflux.  it might help just to see how well controlled the reflux really is.  GL! 

TriciaJoy

My son was a very early preemie born with a stomach issue which caused an unreal amount of stomach issues.

I pumped for well over a year but because he was very small, they wanted me to add formula to his breastmilk for the calories. 

It's a very long story, but we tried all of the usual so called hypoallergenic formulas with no success. (alimentum, nutramigen, nutramigen AA, elecare, HMF, prosobee.Elecare (twice actually)) Elecare was actually the worst of the bunch. He puked so much after 3 days on Elecare that he ended up hospitalized for dehydration. 

After many months, we discovered that my son's problem wasn't milk, but was actually corn. Most of the major formulas use corn syrup solids as their source of carbohydrates.

We switched to Good Start formula which does not use corn syrup solids and had a much better experience.

I'm by no means saying your daughter does not have a milk problem. That's FAR more common than a corn problem. Just be aware that there are other factors. The doctors kept telling us that it was "impossible" to be allergic to Elecare and they were just plain wrong. 

Because Robbie didn't have problems with milk after all, we stayed on the Good Start for a long time. But another friend's son had trouble with both milk and corn and she had better luck with pregestemil. That was one we never tried, so I don't know a lot about it, but my understanding is that it's both milk & corn free, plus has broken down proteins plus fats, so it's a lot easier to digest.

It might be something you could try if you don't have any luck with the Elecare. 

I do wish you luck. Our path was very, very rough and my son ultimately ended up requiring a G tube because he gave up on eating. I do hope you guys can find a solution to keep her out of pain ASAP. 

 

Chandley

TriciaJoy:

My son was a very early preemie born with a stomach issue which caused an unreal amount of stomach issues.

I pumped for well over a year but because he was very small, they wanted me to add formula to his breastmilk for the calories. 

It's a very long story, but we tried all of the usual so called hypoallergenic formulas with no success. (alimentum, nutramigen, nutramigen AA, elecare, HMF, prosobee.Elecare (twice actually)) Elecare was actually the worst of the bunch. He puked so much after 3 days on Elecare that he ended up hospitalized for dehydration. 

After many months, we discovered that my son's problem wasn't milk, but was actually corn. Most of the major formulas use corn syrup solids as their source of carbohydrates.

We switched to Good Start formula which does not use corn syrup solids and had a much better experience.

I'm by no means saying your daughter does not have a milk problem. That's FAR more common than a corn problem. Just be aware that there are other factors. The doctors kept telling us that it was "impossible" to be allergic to Elecare and they were just plain wrong. 

Because Robbie didn't have problems with milk after all, we stayed on the Good Start for a long time. But another friend's son had trouble with both milk and corn and she had better luck with pregestemil. That was one we never tried, so I don't know a lot about it, but my understanding is that it's both milk & corn free, plus has broken down proteins plus fats, so it's a lot easier to digest.

It might be something you could try if you don't have any luck with the Elecare. 

I do wish you luck. Our path was very, very rough and my son ultimately ended up requiring a G tube because he gave up on eating. I do hope you guys can find a solution to keep her out of pain ASAP. 

 

 

Thanks for writing - I didn't even think of corn - you're right, everything you read about goes to saying milk issues with kids. yesterday we had a second bloody diaper in 24 hours (after a week on elecare) and I called the doc. The nurse said to give her a few more days on the elecare and it was her body reacting to the different food. our next appointment is tuesday, so i will be asking about that as well. i hope that your kiddo is doing better.

katherinemichel

My son was on EleCare until recently and is going back on it again (also has severe reflux and allergies). We tried everything and thought we found the answer when we switched to Alimentum. The Alimentum only was a miracle worker for a short time and then the bloody diapers were MUCH WORSE than before.
EleCare really changed him and he does so much better on it. I can't remember how long it took, maybe a few days??

I hope you can find a formula quickly that helps your son. 

Also, I saw you live in Texas? This past January a law went in to effect requiring insurance companies to cover EleCare and Neocate if your child meets the criteria. 

Here is a link to the bill...

 https://www.childrensmagic.org/pages/texasbill.pdf