Posted By Posting
Jul 10, 2009
ambyuk
infant newly dx, still in hospital, advice please
Hi there Forgive bad grammar etc, I'm on my mobile in the hospital as we speak. Summary of symptoms: mucusy stool, refusing feeds, frequent hiccups, refluxing (and swallowing it, she doesn't vomit), gasping for air, pain during feeding. My daughter is almost 8 weeks old. From birth she had symptoms of reflux, took a while to get her to feed properly. She would choke/cough/gulp regularly. Once she started feeding better ishe gained weight well. However a couple of weeks ago she started getting more fussy. It got worse and worse until she was screaming all the time and only feeding for 1-2 mins at any one time. She would be hungry but pull off the breast screaming. She began losing a lot of weight and ended up being admitted on Saturday. They diagnosed GERD and started ranitidine and gaviscon. She had a miraculous turnaround and began feeding really well again. We were discharged Sunday, and she was like a different baby! Happy and smiley, hardly ever crying, feeding perfectly. Sunday evening she started going downhill again. By Monday am she was screaming constantly. I called the hospital and they wanted me to bring her back. We've been in since then. She had gained weight from Sat - Mon due to the feeding well on Sun. However she lost weight again by Wed so we put in a feeding tube and I would breastfeed her then they'd top her up with the tube. After the first top up she started feeding really well again, she pulled out the tube yesterday am and we left it out as she was doing so well. Then last night she started pulling off the breast again and gradually got worse until this morning we are at square one with her, she's inconsolable a lot of the time and won't feed well. The tube will be put back in tomorrow if she doesn't turn it around overnight. At this point I'm just so frustrated, every time I think she's improving she gets worse again. I live in Scotland and much as I appreciate the nhs, right now I feel they are failing us. We get no answers. I want to know, is this normal? Why does she improve and then go downhill again so rapidly? Why is she in so much pain when the ranitidine should be neutralising the acid? What else can we do to help her? Are there any diagnostic tests they should be doing? Obviously a feeding tube is not a permanent solution. I can't help but wonder if we are missing something or if something else is going on with her. Any advice? I'm desperate, I just want my happy baby back. Seeing her in agony, starving but afraid to eat, is killing me.
Jul 10, 2009
mommy2k
I'm so sorry to hear about your little one having so many problems. I'll try to give some ideas to you but others will jump in too. I would first ask for an upper gi which is the baby just swallows a barium solution and then they watch it to see if anything is anatomically wrong. The other thing that I would say is that I think that ranitidine is just an h2blocker which doesn't always work the greatest for neutralizing the acid. It's also very weight sensitive too.

The other thing I would say is that I just found this out about my son is that he has delayed gastric emptying. He had a test that showed it and he has to be on a motility drug for it. He would do well and then go downhill and not eat as well either. He also had swallowing hard, screaming during and after feeds, and gag and choke on feedings. So it might be worth checking into. These aren't very invasive tests either. I would say they need to figure out something better then putting a feeding tube in. I would definitely push for more testing if I were you.

Reflux I have found though is very up and down. Right when I think it's going so good then we have another bout of it and things go downhill again. I was always told time is what it takes and I would have to say that it is getting better on not having so many rough days as he gets older.

Hang in there! This site has a lot of knowledgeable women and they are very helpful so keep asking away. Welcome and I hope your lo gets the much needed relief she deserves.

Jul 10, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Oh sweetie, I have sooo much to say but don't have alot of time, I'm getting ready to cook dinner. Here's the skinny version:

1- try a high dose of a PPI and if that doesn't work add in a motility med to get things moving better. DON'T use a suspened form of a PPI either, they are as affective.

2- Testing: ask for an Upper GI series to get done. This is a good first test and will check to make sure all structural parts form esophagus down are working/formed properly.

3- Ask for an EDG, a scope. They will taker her to the O.R. and put a camera down her throat. They will also take a few biopsies while in there. The BX are helpful in making sure it's actually GERD you are dealing with and not allergies (severe) or any EE or EOS disorders.

4- Just a warning about NG tubes, once you put one in, a child will normally start refusing oral feeds completely. Jedd did and there we sat for 18 months. He ended up with a G tube by the age of 10 months. Look to the left next to my name and you will see the URL to his Caring Bridge site.

OK now for WHY the tube was placed in stead of an IV for fluids. A feeding tube *can* be a permanent solution but you don't want it to be if you can avoid it for sure.

What is the: current weight, height, and what are the percentiles? How do they compare to birth %tiles? What kind of formula are you supplementing with? What tests if any have you had done so far or have you eliminated anything from your diet yet??? What meds have you tried (besides what's listed) and what were the doses?

That's all I can think of off the top of my head.

Check back often, we are all around here quite often. i will say though, with an NG tube in and using a pump to top her off, you will slip to 100% tube fed pretty quickly. I really don't want to scare you, but it's happened to just about all the tube feeders I know online. You need to get to the root of the problem fast and then life gets easier and you can yank the tube. This is JMHO but I'd be leary of putting in an NG tube depending on how her weight was prior to getting it. They really really aggravate the throat when swallowing which can make oral feeding worse.

Jul 11, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
I am sorry that you are struggling with your little one. Is there any chance that she could be constipated? Sometimes that can cause a lot of pain.

rantindine didn't really do it for my little one. We had to step up to a PPI, like prevacid. IT is a stronger drug and keeps that acid from being produced. Many little ones start out on both rantidine and PPI and then eventually wean the zantac.

She could have an intolerance to lactose. This could be determined by putting her on a hypoallergenic formula like Nutramigan or by doing a scope and taking biopses.

do you have any over the counter gas or tummy medicines? many do so well with mylanta.

I hope she gets back on track soon.

Jul 12, 2009
nikkid
Hi. I live in Hertfordshire in the UK and echo your thoughts regarding the NHS as we struggled with them for 5 months before finally demanding a referral. Firstly, go to your GP and ask for a referral to a gastro pediatrician. They may try and put you off but be firm, they can't refuse a referral. We struggled for 5 months with a regular pediatrician who refused to acknowledge the severity of my son's GERD. However, once we saw a gastro pediatrician, he doubled my son's medication and my son finally got some relief. It took us 6 weeks to get that appointment so you may have to wait, but it is certainly worth it. Ranitidine is very weight sensitive and needs to be constantly monitored with weight changes. Ranitidine and gaviscon are what they start with, but it just didn't cut it with my son. We got relief from ranitidine for about 4 days, then bang, right back to screaming again. My son (6 months) is now on a PPI (omeprazole mups 20mg which is split twice a day), alongside ranitidine and also an anti-sickness and motility med to keep him from being constipated which is called domperidone. His formula is also thickened with carobel which has extra calories as well as helping keep the formula down. Mucusy stools can be a sign of an allergy. My son is on neocate which is a hypoallergenic formula. May be worth trying to eliminate dairy/soy from your diet and seeing how she gets on. What formula are they topping her up with? I think until you can get a referral, try the elimination diet, keep her upright for at least 30 mins after feeds and try propping the head of her cot up. It took nearly 6 months for us to get the combination of medications and formula right and I think we could have got there a lot sooner had we seen a gastro ped earlier on. We still have some bad days, but they are nothing in comparison to those first few months. With the right combination of formula/diet and medications, it will get easier. I know how heartbreaking it is to watch them in pain. The advice and support you will get on these forums is wonderful so keep checking in and post your questions and concerns as these ladies are very knowledgeable. Good luck
Check with your
doctor first!