Ped GI – grrr…

[Anonymous]

Warning: this is going to be very long.

A little background…

Evan is 8 mths old now. I’m still nursing w/ a modified diet, but not crazy restricted like in the past. Evan hasn’t had mucous in his diapers since before the holidays. He’s eating solids a bit (2 meals/day) but not much variety yet.

We had an appt w/ Ped GI’s nurse practitioner a little over 2 weeks ago. At that time Evan was only on Axid “as needed” (before bed every night & sometimes around noon). I told the NP that although his diapers had been great & he was napping very well (1 hr in a.m. & 2.5-3 in p.m. ) he was still sleeping very poorly @ night… waking up 3-5x. She suggested that we try Prevacid again. We discussed his past dose (30mg/day, which gen ped prescribed b/c ped GI wouldn’t), she balked @ the dose, blah, blah, blah. I referred to marci-kids, she listened, ok fine. We agreed that we would try the Prevacid again & I would call her in 1-2 weeks to check in. I THOUGHT I made is clear that I would be doing 15mg 2x/day, not her recommended 7.5mg 2x/day. She said if it seemed to be working she would write a script.

Within a few nights Evan started sleeping 7pm-4(ish)am… only waking 1x/night. Obviously the Prevacid was working & that was great.

I called ped GI office & told them I needed a script for 15mg 2x/day. They said no problem, asked my name, etc… but it was only 7.5mg 2x/day when I called pharmacy.

So, I’ve been on the phone w/ ped GI office, nurse practitioner, pharmacy, you name it every day (usually 2x/day) since last Friday. I’m mostly frustrated w/ myself for trying to get this script through ped GI knowing that my general ped would have written it no problem.

So, today the NP calls & says (for the millionth time) that I shouldn’t be giving Evan such a high dose & they will not write the script. (sidenote: someone must have messed up b/c when I went to the pharmacy yesterday the rx was ready & it was 30mg/day so I have what I need for now- but I haven’t told ped GI office b/c I don’t want to get anybody in trouble, etc). She says she’s talked w/ the ped GI dr. (who btw I did like) & he said we need to do some further searching… he says (get this) we need to “rule out MSPI & then probably do some pH probe testing to confirm he’s refluxing & also start some stool sample for hemmocults”. At this point I got very upset… we’ve been down this road, he’s already had testing done (upper GI, endoscopy & colonoscopy) & WE KNOW he has MSPI at the very least. Not to mention I testing every single one of his damn diapers w/ hemmocults for 3 months! I said “if the Prevacid is working then why would we even consider more invasive testing?”.

I went through our ENTIRE path beginning to now. I’m so so frustrated. She listened & seemed to get why I was so upset… but we both agreed that we were back @ square one w/ the med dosage (remember: she doesn’t know that I have @ least 1 mth of our rx now… not to mention I don’t really NEED their script since general ped will write it for me). She said she understands that I’m going to give the dose that I want (aka: Evan needs) & she understood why…but that I’m going to run out of script if I do that. Said she would talk w/ GI dr. & have him call me. I asked her to please relay as much of our path as she could so I wouldn’t have to re-tell again.

I guess my question is this: am I missing something? Should I be considering a pH probe?

Bottom line for Evan is this: he doesn’t need meds when my diet is VERY restricted + he’s not eating solids. Once he started solids is when his sleep started being disrupted again… BUT his diapers remained normal – which points to reflux (I think).

Also, when GI dr. calls what should I do? Should I play along w/ him & say “oh, ok – I’ll give 7.5mg 2x/day” & then just go through general ped from now on? I’m just afraid that ped GI will call general ped & screw it all up… b/c general ped respects ped GI greatly & would definitely defer to his opinion I’m afraid.

Sigh… thanks ladies for listening (if you’ve read this far-lol) – I’m just so upset w/ this. Just when we think we’re on a roll. Sorry it’s so long.

ETA: I have about 2-3 months worth of Prevacid capsules saved up from before (I was refilling the past script every month just in case-lol). We are on solutabs now & I have maybe 3-4 wks of that.erinntx2009-01-29 14:27:45

[Anonymous]

Oh Erin,

I don’t know what to tell you! a Ph probe might not be a bad thing… but I am not really sure as we didn’t have to do it! I know you are so glad to be able to be “adventurous” with your diet so the probe might help you get some more variety?? I really don’t know but I feel for you and I am so sorry you are having to deal with this. Good Luck … sorry I am not of much help.

[Anonymous]

erin, i would do the probe. sylvia had her’s done right around 8 months. she had her scope done at the same time. i had no idea how bad her reflux actually was or how much she was actually refluxing until the tests were done. she had her fundo done just before she turned 10 months old.

[Anonymous]

I am for the probe as well. Be honest with your ped regarding the GI but then ask them for the script. That way if the ped and the GI speak, the ped is well aware of the issues, etc…. sounds like they would write you the script for what you need anyway…..

Hang in there!!!!!!!!!

[Anonymous]

Why do you all suggest the pH probe? I’m not disagreeing per se, just wondering what your reasoning is. I thought it was usually just used to determine if reflux was happening to decide if meds were needed… maybe I’m wrong.

[Anonymous]

every baby refluxes, it just isn’t a problem for all of them. my oldest daughter spit up tons and was a happy, chubby baby—-my easiest child. sylvia spit up tons and was failure to thrive and anemic and we held her almost 24 hours a day for the first 2 months of her life. we finally saw a ped gi around 6 months old and he upped the prevacid she was on and added carafate and said to call in one month, come back in two months. a month later i told the doc i thought she was doing about as well as could be expected. a month later when he saw her, she wasn’t gaining weight and he said she needed tests. she actually seemed better than usual during the 24 hours we were in the hospital with the probe. i watched her probe read-out and could see that she was refluxing and dropping into acid levels—-and she didn’t even flinch. it was like she didn’t even notice. the doc said her scope looked pretty good, but that was just with the naked eye. when he called me with all the test results, he told me her results were, “pretty darn abnormal.” she was refluxing almost 25% of the time overall—19% when lying down, and almost 29% when she was upright. i think she had 97 episodes of reflux and a number of them were prolonged episodes—which will do the most damage because the acid sits in the esophagus for extended periods of time. her longest episode of reflux lasted 44 minutes and she slept through it. her scope showed that her esophagus was getting ulcerated. i had no idea that her reflux was as bad as it was. the doctor told me that it was all that she had ever known.

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