Why do I feel like no one believes me?

[Anonymous]

I’ve actually never been one to put a lot of stock in my intuition, but I’ve come to believe that, when it comes to my child, I really do have a gut instinct. And, that gut instinct is telling me that my 6 month old baby is not being medicated properly!

Here is a brief rundown:
Went to see a ped GI on 2/4.
Started on compounded Prevacid on 2/5.
New baby emerged immediately. After a few days, I believed we’d found a miracle drug.
9 days later, the bottom dropped out, and my dear LO was back to screaming at naps/bedtime.
After some internet research, I saw that the compounded form of Prevacid is tricky to do correctly, so I phoned the doc and asked for a new Rx. They sent us to a different pharmacy that supposedly does it “right.”
Started new compound on 2/16. Again, saw a new baby that same day. She was able to go to sleep peacefully on her own.
That lasted for exactly one week. Now, we’re back to crying, no, make that screaming, at nap times.

I’ve been on the phone numerous times with the ped GI’s office, but feel as though they don’t believe me. I just talked to them again today and was basically begging for a new Rx. Something. Anything!

I’ve decided that at her next nap, I’ll videotape the video monitor. Maybe if they see what I see, they’ll stop acting like I’m a lunatic? They are hinting that this is behavioral, but here’s what my poor little girl does: I lay her down in her crib, she turns her head, and closes her eyes. She’s laying there peacefully trying to go to sleep. A few minutes go by . . . she starts to turn her head from side to side . . . then her arms start to flail . . . then she starts fussing, which escalates into crying . . . it’s not like she is refusing to go to sleep. SHE TRIES!!!! But, after a few minutes, it’s like she CAN’T do it! She didn’t just suddenly decide, “Eh, screw it. I don’t feel like napping right now.”

I am so, so, so frustrated at this point.

[Anonymous]

Hang in there! And we believe you! It is so frustrating when the doctors are supposed to help you make you feel like you have no idea what is going on. Definitely trust your instict. We had luck with the compound for my second son, but definitely the consensus here is that there are few who have found real success with it. There is the solutab that we had issues with for other reasons, but they will not loose their potency like the compound, so maybe that is worth a shot? also, what is the dose that your LO is on?

Hang in there! You are not crazy and I’ll bet your gut instinct is absolutely right!

Definitely videotape and also I would try for another form of prevacid…

Others will chime in but you found a place with great moms with great advice and support! Welcome!!

[Anonymous]

I do feel for you… we went through the same thing. The compound never worked for us and they told us it was everything under the sun… behavioural, behaviour disorders, anxiety disorders (on her part), until her feeding aversion was so bad and her arching and screaming was so terrible that they had to admit that it could be the reflux all along. We also went to pharmacies who supposedly did it right, but didn’t. One question: Are they adding flavouring? If so, then that alone isn’t doing it correctly. I’d also try the solutab or zegerid. You might want to check out http://www.marci-kids.com for info on dosing- they’re aggressive but their doses work.

[hellbennt]

FAX FAX FAX the dr

dont wait for a call…

start off w/ a THANK YOU

keep it short & sweet

stick to the facts (no feelings and no rambling emotions)

state current meds, doses, symptoms

make request- flat out- short & sweet

THANK AGAIN

follow up by calling office to say fax was sent

call again later to discuss requests in fax, ie: have you called in the increased prescription yet? or: have you written the prescription for the compound how I requested? THANK YOU

compounding (from lori):

https://www.infantreflux.org/forum/forum_posts.asp?TID=7855&TPN=1

[Anonymous]

Okay, we finally got the doc to agree to the Zegerid. But of course, it’s at an out-of-town pharmacy, and with the bad weather we’re having, we won’t be able to pick it up until tomorrow.

In the meantime, we have the Prevacid solutabs, but they are doing NOTHING. No help whatsoever, it appears. This is day 3 on them, and she seems to be getting steadily worse.

How can it be that she seemed to be so well treated on the compounded Prevacid (granted, only for 1 week at a time), but the solutabs are not working at all?????

Oh, and the GI made the comment that maybe this is not reflux at all. If that’s the case, why would we have seen immediate improvement when we started the suspension of Prevacid each time?

[Anonymous]

What symptoms does your daughter show when unmedicated? (Sorry if I missed this elsewhere…).

Disregard doctors who belittle you. Let us know where you live and maybe someone here can recommend someone.

[Anonymous]

s&h’s mum wrote: What symptoms does your daughter show when unmedicated? (Sorry if I missed this elsewhere…).

Disregard doctors who belittle you. Let us know where you live and maybe someone here can recommend someone.

Yes, I’m totally ready to switch docs. We live in DeKalb, Illinois, but have been seeing a ped GI in Rockford, IL.

The LO cries and cries at naps/bedtime, spits up constantly, and arches when lying on her back. When she was younger, she used to get fussy after feedings, but she doesn’t anymore.

This morning, she was wailing, so I went in and flipped her to her tummy for her nap (I’m relying on the video monitor to keep an eye on her), and she quieted immediately and went right to sleep. Does that sound like a behavioral issue to you?

[Anonymous]

Hey, sorry to hear about this… I hope the Zegerid eventually solves the problem, but just wanted ot mention that until you get the Zegerid, the solutabs have to be given on an empty stomach at least 30 minutes before a meal. The compound (and Zegerid, for that matter) don’t have to be timed, but the solutabs do. Maybe that’s why they aren’t working properly for you.

[Anonymous]

Bensmama wrote: Hey, sorry to hear about this… I hope the Zegerid eventually solves the problem, but just wanted ot mention that until you get the Zegerid, the solutabs have to be given on an empty stomach at least 30 minutes before a meal. The compound (and Zegerid, for that matter) don’t have to be timed, but the solutabs do. Maybe that’s why they aren’t working properly for you.

I wish the answer were that easy. We’ve been diligent about timing the solutabs. We wait at least 30 minutes before feeding her.

[Anonymous]

Ugh… I’m sorry. Hopefully, the Zegerid will help!!!

[Author]

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