Infantreflux.org | scope/EGD?

This topic has 14 replies, 1 voice, and was last updated 19 years, 7 months ago by hellbennt.

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February 5, 2007 at 4:55 pm #24135

Anonymous
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Hello again all! Just when you think you’ve got this thing beat, BAM—something happens and you’re back to square one.

Nicholas just turned 6 months old today. For the past 10 days, I’ve been giving him 15 mg of Prevacid a day rather than the 7.5 mg that was prescribed when he was 3 weeks old. The Ped. wouldn’t increase it so I did so myself, however then you run into the problem of running out of meds too fast.

So I called a Ped. GI Spec. We had the appt today. The doctor was very skeptical about the Prevacid, said it’s not even FDA approved for infants. I pleaded with him that the doasge I am giving him now is doing wonders for him. That didn’t seem to convince him, he said he then he recommended an EGD. I shared with him all the symptoms Nicholas has had since week 1, he said it may not even be Reflux, he wanted to check further. Does that seem right? He wouldn’t take my word about the Prevacid, said that its’ too powerful of a drug to be given to a baby who may not even have reflux–who may be just colicky? I was devastated to say the least, all we needed wanted was the script for the increase.

Anyhow, is the EGD worth it? I heard if the baby isn’t refluxing at the time of the test nothing will even show up. The GI Spec. said if nothing showed up in the test he would be hesitant to give him the Prevacid at all. I feel like my back’s against the wall. I’m worried about the test, is it a big deal? It’s cruel to think that I may not be given a script for the Prevacid at all, just when my baby has finally found some comfort.

Sorry for the rambling, I just feel like crap right now. Why don’t these doctors know about the Marci-kids info, the doctor didn’t know anything about the info and kind of looked at me like I was crazy to have even mentioned it.

Any suggestions on the EGD? Is it worth putting the baby through it? Thanks for all the support, this site is a lifesaver!!

February 5, 2007 at 5:05 pm #24136

hellbennt
Keymaster

yikes. do you have a family doctor you could call/fax a letter to explaining all of this? to get the prescription, I mean?

okwhat’s an EGD? endoscopy?

February 5, 2007 at 5:11 pm #24139

Anonymous
Inactive

My husband and I haven’t been to a family doctor in years. They wouldn’t even know who we were.

The EGD is the upper endoscopy. I was really hoping we could try the med increase before any procedures had to be involved. I just don’t know what to do.

February 5, 2007 at 5:36 pm #24141

hellbennt
Keymaster

well, what is the endoscopy going to show? tell the dr that there probably won’t be any irritation bcse of the dose of PPI your son has been getting…it’s a catch-22…they can do biopsies & look for eos cells to tell you if there’s allergic stuff going on- do you suspect allergies? ask the dr what he’s looking for?

February 5, 2007 at 5:52 pm #24146

Anonymous
Inactive

Hi Candy,
I’m sorry that you couldn’t get the dose increased. I can’t believe that a GI doctor would be so against Prevacid! I would also recommend finding a family doctor to get the higher dose. That’s where we initially got our higher dose. I agree that a higher dose should be tried before proceeding with the endoscopy.

Good luck. I hope you can find someone to help you.

February 5, 2007 at 6:10 pm #24150

Anonymous
Inactive

Even though the dose has been low, he’s been on Prevacid for 5 months now, so the test probably won’t show any irritation.

However, the doctor took a stool sample today, said there was a trace amount of blood in the stool. He didn;t seem too concerned with that. The doctor did explain what the the test would show, however I was so distraught by that point that I wasn’t being an active listener.

It just seemed to me that he was so ready to schedule a test, he didn’t give me a real good impression, however I know Specialists are hard to get in to and we got an appt. within a week with this one.

I’m so unsure about this test, however I’m afraid we may be overlooking something if we don’t get it. He did mention something about the stomach and blood passing into the stool, I can’t remember exactly, like I said, I was already emotional by that time.

Hope I can get something figured out before we do the test.

Thanks for the input all!

February 5, 2007 at 8:25 pm #24162

hellbennt
Keymaster

well, if there’s blood in the stool then perhaps it is a dietary issue as well as the reflux- what formula is baby on? breastfed? my feeling is that this dr will tell you to switch formulas & call it a day…

can you ask for a second opinion? maybe after the test?

February 6, 2007 at 7:25 am #24185

Anonymous
Inactive

Nicholas is on Nutramigen. His Ped. told us he may have a milk allergy way back when he was first born due to the trace amounts of blood found in his stool. We had him on 5 different formulas, finally saw some relief with Nutramigen.

Nicholas was never breastfed, maybe that’s where I failed him. I think we’ve decided to have the test and see what the results are, probably will not go back to the same Ped. GI SPec.

I’m still convinced the the increase in Prevacid has really been helping him, I’m going to have to try and find someone who understands this.

February 6, 2007 at 7:45 am #24186

hellbennt
Keymaster

You did not fail him!

I’d guess the next step is neocate…

but I would also hazzard a guess that the increased prevacid is helping him as well…

keep being the best advocate you can be for your baby!

~laura

February 6, 2007 at 9:41 am #24191

Anonymous
Inactive

Please don’t feel like you’ve failed your baby. My refluxers were breast fed and they were still miserable; as many other BF refluxers on this board have been. You’re doing everything you can.

Finding someone who understands about the Prevacid is a good idea. Many moms here have had to hop around to different docs until they found one who would listen. It took me weeks to convince Myles’ doctor but I finally did (by faxing the marci kids info along with a letter). Once he was on a good dose things turned around. So, hang in there and keep working on it.

February 6, 2007 at 1:30 pm #24208

Anonymous
Inactive

The only way you could fail your baby is if you didn’t love him! And you are NOT at all in that catagory!!! I would try and get a second opinion (Brianna has been to THREE ped GI’s). Also, her is something to tell your GI. My PED prescribe Brianna prevacid. And she said that the STANDARD dose for an infant was 15mgs….(granted that is not exactly correct either, but if a general ped. was willing to go to 15…well they don’t do anything that isn’t by the book safe)

Good luck! Keep us updated

February 6, 2007 at 7:31 pm #24237

Anonymous
Inactive

A lot of us have dealt with Dr. just like yours. It is truely a shame. They think they know what is best and yet they have never had a reflux baby. You can study about it all day long in school, but it is totally different living it. I am so sorry you are going through this. There is a link on here somewhere, probably in Laura’s into that will take you to some Dr that other moms recommend. There weren’t any in our area in Tn, but maybe there is one in your area.

Also, I know everyone has said this already, but you have in no way failed your baby. You have enough to worry about and deal with that shouldn’t even be a thought. It is extremly hard to bf a reflux baby. I gave up with my first son because I just couldn’t take it anymore. Noone has failed your baby except the dr’s that don’t want to help. Just keep on fighting.

February 7, 2007 at 3:38 am #24263

Anonymous
Inactive

Maybe it is time to find yourself a family dr- perhaps get some reccomendations of people you know. I think because they haven’t had all that “training” they seem a little bit more open and their heads are not “in the clouds”. I work with Drs all day and certainly the more they think they are a “specialist” the less in touch they become with us plebs. My general practioner (Family dr) is fantastic and I can rely on him to be open and flexible.

I also was unable to breastfeed so I certainly know the questions that you ask yourself. But I definately agree with Emily- a mother who loves their little one like you do has not failed in any way.

February 7, 2007 at 7:06 am #24267

Anonymous
Inactive

Thank you all for being so wonderful!!! It’s so nice to know others understand exactly what you are going through and that you would go to any lengths to make your baby feel better.

I’m searching for a family doctor in our area, not having much luck. We either have Ped. or PCP’s. I may have to go out of town. I just want Nicholas to know what it feels like to “feel good”. He has been doing really well on the 15 mg of Prevacid. Luckily, I have enough meds to get him through until his endoscopy (2/19). I’m sure we’re going to get a second opinion, I wasn’t real comfortable with the Ped. GI Spec.

Thank you all again for your continued support and kind words, this website really keeps me going!!!

February 7, 2007 at 8:57 am #24269

hellbennt
Keymaster

another idea: find out where there’s a ped GI affiliated w/ an emergency room- a children’s hospital? I’m not sure how exactly you do this but there have been moms who have posted that they find out when the dr is on call and bring baby in ER at that time…of course it’d have to be another ped GI than the one you’re seeing
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