Infantreflux.org | Why aren’t the doctors helping?!?!?!

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March 2, 2006 at 1:39 pm #2853

Anonymous
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I am alternating between crying my eyes out and being so freaking mad! We started this whole ordeal with a pediatrician who didn’t believe our DD had reflux (because she wasn’t vomiting and was gaining weight) and kept saying she was “just a fussy baby”. We managed to get a referal to a GI from him – I think he just wanted to get rid of us. The GI appt was weeks away and I couldn’t stand the thought of not doing anything for DD in that time so we tried a different ped. He immediately agreed that DD has silent reflux and put her on a good dose of Zantac. Things got better on the zantac but still not great so we figured we’d see what the GI said.

So today I drove an hour to see this guy, with DD crying the whole way because she hates the carseat, and he turns out to be almost as useless as our original ped! He says to stay on the same dose of zantac but give it in 3 doses instead of 2 and come back in a month!!! No mention of trying a PPI. The only other thing he offered was to do an endoscopy which, from my limited understanding, is not the best test to diagnose the problem. When I told him I wasn’t thrilled with staying on the zantac for another month because I didn’t think DH and I could last that long, what with having to hold DD night and day, he basically said I was spoiling her. He said that her wanting to be held wasn’t due to the reflux and that we were creating a bad habit, we should put her down awake so she could learn to sleep on her own, yadda, yadda, yadda. I wanted to kick him in the balls right there and then!

How is it that so many people have their babies on PPIs and the doctors I talk to act like I’m asking them to put my kid on crack?! Our new ped (who gave us the zantac) had mentioned trying prilosec next but now that the GI poopooed that idea I’m worried our doc will default to this other guy’s “expertise”. We are seeing the ped tomorrow for a regular check up and I’m going to beg him for a PPI. If he says no I wil cry for sure. We just can’t keep going like we have been. And despite what the GI said today, I’m fairly certain that any attempt at “sleep training” we made right now would fail miserably.

I’m beginning to hate doctors. I also think that you shouldn’t be allowed to specialize in some thing unless you have first-hand experience. The guy we saw today said his now-19-year-old son was a fussy baby… how much you want to bet that his wife was home with the kid 90% of the time?

Karen

March 2, 2006 at 1:43 pm #2854

Anonymous
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Oh, Karen! That all sucks! I would however, get the endoscopy. You can get a lot of answers from it. It will tell you if the throat is raw and irritated from the acid, and also they will take a small biopsy to see if there are allergy cells to see if it’s formula or something that she is reacting to.

Hang in there, but in the mean time, get another appointment with a different GI doc!

Ann Marie

March 2, 2006 at 3:50 pm #2873

Anonymous
Inactive

Yup! I hear ya!! You have to TELL the doctors what to do! Not the other way around. I realized that when my son was just weeks old. If you want something done, you tell them and then the OK it. It seems that’s all they are there to do: They OK things. If you let the docs know you’ve researched it they are more willing to comply. I would often bring in print-outs of articles, etc. They would know I was serious and I had done my homework and would change the med dose without even looking at those papers.

On top of the reflux, my son had a major birth defect (ea/tef) and the docs around the country don’t even know much about that because no one has written about it – very frustrating!!!

Here’s a great link on getting your doctor to take your seriously from another infant reflux site

http://www.infantrefluxdisease.com/seriously.php

March 2, 2006 at 8:01 pm #2903

hellbennt
Keymaster

michelle’s post about pushing for the right dr: https://www.infantreflux.org/forum/forum_posts.asp?TID=1002

March 3, 2006 at 2:22 am #2921

Anonymous
Inactive

Karen

Sorry it is so frustrating… but the endoscopy IS the right test for this — not the only one test obviously, but you will see if there is any irritation or some EOS cells or some other abnormality.

Please think about it….

March 3, 2006 at 6:50 am #2924

Anonymous
Inactive

Thanks for the support everyone. I really need it.

Ann Marie & Thais – The reason why I said the endoscopy isn’t the “right test” was due to this info I got from a link on this website…

“The greatest problem with this test is that most infants with symptoms of gastroesophageal reflux do not develop esophagitis (less than half of infants with severe symptoms of gastroesophageal reflux demonstrate esophagitis at endoscopy) and so a normal test does not necessary mean the child does not have reflux. “

I’m worried that if we have the test done and everything looks fine then the doctors will dismiss Tess’ problems and not help us. That’s essentially what happened with our first ped and the doc who did the upper GI. When the initial dose of Zantac (0.7ml) didn’t help much our ped proclaimed that it meant she didn’t have reflux. Then the doc who did the upper GI told us her reflux was a “2 out of 10” and implied that we were making a big deal out of nothing. I feel like if we do any tests Tess that show anything short of fist-sized holes in her esophagus then we’re just shooting ourselves in the foot.

I’m hopeful that our new ped will agree to let us try a PPI with having to do the endoscopy.

Karen

March 3, 2006 at 7:22 am #2926

Anonymous
Inactive

But you do need to know if she does have esophageal damage and EOS
cells. Maybe also ask for a PH probe if you want to see level of
reflux/acid over a period of time?

I would strongly recommend that you do the endoscopy AND push for a
PPI. You might find out from the endoscopy that Tess needs to be on
Neocate – and that would also be worth knowing…

Additionally, know that most Peds don’t prescribe a high enough dosage
of the PPI to truly be effective. Can you find a new Ped GI? Where do
you live? Maybe someone will have a recommendation for you.

March 3, 2006 at 9:27 am #2935

Anonymous
Inactive

One would usually have a Barium Swallow or Esophogram before getting an endoscopy. The Esophogram would show the reflux happening. The barium is a white liquid that shows up on an x-ray. My son’s last Esophogram looked like old faithful and the three docs in the room actually shouted “WHOA!”, because it came back up so far. That’s my boy!

March 3, 2006 at 9:33 am #2936

Anonymous
Inactive

Karen,

You are right to question the Doctor especially with the way he treated you! I know they may not find anything, but I would think for Tess it would be better to know one way or the other. I still would find another doctor, as well! We had a doc who understood that even though the tests might not show everything, that he was clearly in pain and needed to do something about it.

I am sorry your doctors are not being helpful like they should. This is hard enough without having to fight every step of the way!

Hang in there!!!

Ann Marie

March 3, 2006 at 10:03 am #2938

Anonymous
Inactive

Marsha – We did have the barium swallow (upper GI). Other than the reflux everything was normal. And as I mentioned above, the doc who performed the proceedure made it clear that we were wasting his time.

We have an appt with another ped GI in a couple of weeks. I’ve heard good things about this guy and he’s right down the road from us. We’ll see what he has to say. In the meantime I’m still going to see if our regular ped will let us try a PPI. Wish me luck.

Karen

March 3, 2006 at 3:21 pm #2957

Anonymous
Inactive

Karen,

I am having similiar problems with my GI. My boy was born on 12/22/05, just around when Tess was born. He has shown signs of allergies & silent reflux. The GI put him on Neocate formula & Pepcid, we went back to him after 2 wks & told him we saw no change & we wanted him on a PPI, he said there is no studies of babies this young being put on Prevacid or Nexium, etc. & that he doesn’t think it’s a good idea, he shot me right down. The only thing they did was actually the opposite of what I wanted, they took him off the Pepcid & Mylanta & said for us to call him after the weekend & if he was the same or worse, they would schedule a PH Probe to see if he definately has silent reflux, so in the meantime I have been suffering, just like you & getting more & more mad at the no results. These poor children are suffering & the doctor’s want us to sit by & watch. The hardest part for me is my son is a twin & my poor daughter suffers, because he requires so much attention.

Does everyone agree that a 10 week old should get a PH Probe to determine if he has silent reflux? Also, what about the fact that my GI won’t put him on a PPI??
Karen-we are definately in the same boat & hope maybe we can try to help each other out while going through a hard time in our lives!!

Dena

March 3, 2006 at 4:33 pm #2964

Anonymous
Inactive

I feel so lucky to have the doctor I have after reading your story. My doc immediately agreed that my second born (now 2) had silent reflux and let me try Zantac right away for her. It helped a little, but back then I knew nothing about Reflux and nothing about PPI’s, so my little sweetie suffered needlessy until she was eight months old. My new baby has REFLUX with vomiting, and again my doctor recognized immediately what it was and this time (better informed?) suggested PREVACID, however at a very low dose. My little guy wasn’t doing too well, so I copied all the information about PPI dosing from the MARCI-kids website and talked to her about it over the phone and later dropped it all off at her office. She allowed me to increase his dose to what DR. PHILLIPS reccommends, and thankfully my little guy is doing better. I’m so sorry your doctors don’t seem to take you seriously and are minimizing your child’s problem. Perhaps you can do what I did and make copies of all the information from MARCI-kids and bring it along to your next appointment. As much as I admire my doctor, I am aware that even the best doctor can’t know everything. If you can’t get any help from your current doctors I hope you will find new doctors. REFLUX is so hard to live with, for the babies, and for rest of the families. These babies deserve the best medical care they can get, and sometimes we parents have to go nuts getting it for them. I wish you the very best.

March 3, 2006 at 5:04 pm #2970

Anonymous
Inactive

UPDATE…

I LOVE OUR NEW PEDATRICIAN!!!

He asked how the appt with the specialist was and I told him I was disappointed. I told him what the guy said, including the bit about spoilingTess, and he was very sympahetic. He even made a note of the guy’s name (he wasn’t familiar with him) presumably so that he never recommends anyone to that jerk. Then he asked me “What do you want to do?” I said I wanted to try a PPI and he said OK. Yea! I don’t know why I bothered with the stupid GI in the first place. Well, yes I do. Our first (useless) ped suggested it and our new doc said to go ahead and see what he had to say. From now on I’m just sticking with our new ped. His second child had reflux so I think that makes him much more responsive to this. He’s so awesome!!!

So we start Prevacid today. I hope this makes things better. I realize we might still have to play around with dosage and whatnot but at least we’re trying something.

Dena – From my limited experience all I can tell you is find a doc who will listen to you and work with you. I hope you get some better help soon.

Karen

March 3, 2006 at 5:07 pm #2971

hellbennt
Keymaster

Marsha: unfortunately the Upper GI is hit or miss. If the baby isn’t refluxing at the time of the test then it will not show reflux. There have been many parents on this board whose children have (oftentimes severe) GERD and it did not show up on the Upper GI…

Dena & everyone: I do not think a ph probe is necessary to determine silent reflux. PAIN should be enough! Symptoms should be enough- coughing, gulping, gassy, inconsolable crying…Sandifer’s symptoms should be enough (back arching is a ‘classic’ Sandifer symptom- read more from the link from here: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1&TPN=1)

As for an endoscopy: it can help to see if there is damage and it can look for EOS cells which would show (protein) allergies AND it could show esophogeal thrush, which can’t be detected any other way…

from here: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1&TPN=1 there is a link about MSPI and there’s a link to find Ped GI recommendations.

Hang in there everyone!

~laura

March 3, 2006 at 5:48 pm #2974

Anonymous
Inactive

The new doc I saw last week was all for the endoscopy for Hailey, but when talking about the tests, here’s what he said: The tests can be very valuable, especially when a positive finding emerges, but when findings come back negative, we have to be careful in assuming that this means that reflux does not exist, or is not uncomfortable for the child. He also said that-

Diagnosing “no reflux” based on an upper GI is like going whale watching, standing outside for 5 minutes, and when no whales surface, concluding that none exist.

Saying that an endoscopy which shows no damage means there’s no pain, is like saying that your knee doesn’t hurt after bumping it just because there’s no visible bruise.
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