Jenna's latest doctor visit — I'm SO ticked

[Anonymous]

Emergency appointment today; Jenna’s eating well but not sleeping at all. I’m talking 4 hours every 24. I wanted to try to get her doctor to increase her dosage of Prevacid, anyway (she’s on one 15mg solutab daily). This is basically how things went (after over an hour wait)…

Me: She’s not sleeping, I’m really worried.
Doctor: What’s this? (grabs papers out of my hand; PPI dosage information from MARCI-kids)
Me: (flustered) Well, we, my husband and I… We think she may need a higher dose of Prevacid. There are a lot of studies… My husband found this…
Doctor: She’s on 15 milligrams. That’s a good dose.
Me: Um…
Doctor: We could try her on Nexium.
Me: Well, I think she’d do better on Prevacid if she had a higher dose…
Doctor: (basically ignoring me, now) How’s she eating? Let me check her weight gain… Oh, yeah, she gained 5 ounces. That’s good.
Me: Yes, but she’s not sleeping. I mean, she’s only sleeping like 4 hours in any 24-hour period.
Doctor: Well, she’s eating good. That’s good.
(At this point, I’m like, what the hell…)
Me: (changing the subject; this is a losing battle, I know it) I’m also having some trouble administering the solutabs… I tried dozens of ways but she always ends up spitting some out.
Doctor: I’ve got a guy, in Manhattan, that can turn it into a liquid for you…
(What the hell? A GUY? Are we in the freakin’ mafia, now?)
Me: Well, I’ve been in contact with these people who are willing to send me Caracream (he looks at me like I’ve sprouted 5 heads); it would allow me to mix it, myself, and administer it, if I had capsules…
Doctor: You want capsules? I can get you those. (He wasn’t even being snotty; he just really didn’t care. Anything to get rid of me, I guess.)

So basically I was sent away with 40 30-mg capsules of Prevacid. I am SO angry right now. I am a very nonconfrontational person, unfortunately, and this is what I have to show for it. Oh, and get this; I tried mentioning the sleep thing again at the end, after he gives me the capsules…

Me: So you think there’s nothing wrong with only 4-5 hours of sleep every 24 hours?
Doctor: Well, at night… During the day… Well, make sure everything’s dim and there’s no stimulation… You want quiet time…

WHAT THE HELL?!!! DOES HE THINK I’M A FREAKING MORON? MY KID’S NOT SLEEPING BECAUSE EVERY TIME I LAY HER DOWN, ACID STARTS RISING UP HER THROAT!!!!!

I’m so annoyed. SO. Annoyed.

xoxo
Maggi

[Anonymous]

I’m so sorry that the doctor was such a jerk!

[Anonymous]

I’m sorry too. Sounds like every doctor I’ve seen so far! I love the 5-headed dragon look they give you when you mention MARCI kids. I wish there was a better way to help get the word out to these stupid doctors! What just blows my mind is how all of us plain-ol-normals can GOOGLE “acid reflux in babies” and come across MARCI kids and learn more on our own, yet the “professionals” who we pay good money to know about this crap have NO CLUE! If I was a doctor, the very first thing I would do when I heard the first case on reflux in an infant would be to research research research. Now, if the MARCI kids folks are wrong, and the 15mg is the highest any of our LO’s is on, **FINE** — but PROVE TO ME WHY!! None of the doctors I’ve seen have even HEARD OF the marci-kids info which totally blows my mind. There needs to be a website out there with a distance-searchable database of GI Pedis and Doctors who are familiar with the marci-kids data….

[hellbennt]

We were SO LUCKY that our ped GI actually studied some at the U of Missouri!!! that fact combined w/ his personality was great- he LISTENED and read marci kids info…this was 5 yrs ago…this is why I stick around…

[Anonymous]

I am sorry your Dr wasn’t very helfpful. Can you try going to your family Dr? maybe he/she will be more helpful.

[Anonymous]

Okay we had a freaking REPEAT of the exact same crap WITH A PEDIATRIC G.I. the day after we had this fiasco with the regular pediatrician. I hate doctors.

xoxo
Maggi

[Anonymous]

We went through the same thing. I think it’s hard for most docs to accept marci-kids as a reputable source since their primary information comes from the internet. Add that to the fact that it goes against the NASPGHAN dosing recommendations which is what docs are supposed to follow, and it’s often a recipe for disaster. We saw almost every doc in the city before I got Hailey on a higher dose. The way it happened was I saw a new doc, and then asked him to continue our 30mg prevacid daily script. Since he didn’t have our records, he didn’t know that we were actually on 24mg/day. He said “Oh, that’s a big dose”, but wrote the script anyhow. Then every doc I saw after just continued it. Good luck. We had success with caracream when nothing else worked. Unfortunately the feeding and sleeping were still terrible, but the pain was much improved.

Hang in there.

[hellbennt]

is she maxed out on the axid?

how much does she weigh?

we can help at least with adding some more axid, if she’s not already maxed out…temporary solution…

[Anonymous]

I’d find another Dr and not waste my time anymore with that one.

there are GOOD ones out there, you just have to search for them sometimes.

[Anonymous]

I think that’s what we may end up doing: just taking her to another pediatrician and asking to “continue” her dose of such-and-such.

Jenna is now up to 12 pounds, but I think she’s already maxed on the Axid. I think she’s built up a tolerance or whatever it’s called — either way, it seems to have stopped working. The frustrating thing is, they told us to put her on Alimentum, in case it’s a protein insensitivity, and now I can smell the acid on her worse than ever. Could this be because the formula’s so thin?

She had the WORST gas pain Friday night (I’m guessing getting the last of the other stuff out of her system), and when my husband called the doctor about it, he abruptly cut him off and said hurriedly, “Oh, you can throw some rice cereal in it.” I don’t think that’s prescribed for gas pain. I think he just assumed we were calling again about the acid reflux; he didn’t even bother to listen to what my husband had to say!

She’s got a 3-month appointment on the 16th. I’m getting all of her vaccination information, and then I’m on my way to finding another doctor. I’ve had enough of this. The sad part is, this is my old pediatrician. Four years ago, it was me who was his patient. I think the practice just got too big and they’re not able to give adequate care and attention to each kid, anymore. That, and the doctors are grossly misinformed. 🙁

Thank you all for letting me vent. We live in New York City; you’d think doctor’s here would be a little more open-minded or at least on top of the latest research. At least Jenna’s got a good pediatric orthopedist over at Columbia Presbyterian. Otherwise we’d really be having a bad time of things.

xoxo
Maggi

[Anonymous]

Hmm, and I thought the issue was just in Canada! Good luck and I hope you find someone who listens and is excellent.

[Anonymous]

I’m so glad I found this site. We’re on our 2nd reflux baby and I’m finally getting some real information. I am going to try the MARCI dosing to see if we get better results with our 6 week old. We’re currently doing 7.5 mg Prevacid 2x a day and still getting pain, back arching, etc. We also use Mylanta PRN. We did get Carafate to help with the pain, too. A friend recommended aloe vera juice but we haven’t tried it. We’re also on Neocate for milk allergy and have to use suppositories to help pass stool and gas (we use up to 12 a day!). That has made a huge difference; she needed something to bear down on because the little ones are used to working that hard to pass gas and stool. She is much happier now that we are doing that. Also, Dr. Brown’s bottles seem to help with the puking, spit up and gas.
As far as docs go, I did say (accidentally) that we were using 30 mg tabs (15 mg 2x daily) when we first met our GI doc and he said that seemed high, but wasn’t going to change the dose. What this tells me is that you can pound that stuff in there and it is ok and will probably do more for your kid. I’m definitely going to change our current to the MARCI recommendations and then hit up my doc for more refills.
Good luck (oh, and the ignoring sleep bit – that is totally grounds for finding a new doc. You know, sleep deprivation is a proven form of torture!!!)

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