Pedi NOW wants dcrease in S*tabs

[Anonymous]

I AM SO FRUSTRATED!!! My pedi called this morning b/c she had just gotten the report from the Ped GI and now she doesn’t feel comfortable w/increasing Averi’s dose b/c the GI isn’t approving it!!!! So, she wants me to decrease her for 3-4 days and see how she handles it. R U KIDDING ME????? Averi already isn’t having full coverage on the 30mg as it is. This is so frickin’ annoying. I told her that I didn’t have a problem w/the GI’s disapproval IF HE HAD BEEN WILLING TO TALK TO DR. PHILLIPS. I told her that I am doing everything possible to get my daughter comfy and if my GI isn’t willing to go the extra mile and talk w/Dr. Phillips personally that way he can make an informed decision, then I was going to keep her on the higher dose if the decrease doesn’t do anything. I even hinted that she should personally talk to Dr. Phillips b/c THEY r the Drs, not me. They can discuss whatever concerns they have w/the increased dose directly w/the guy in charge of the study!!!!! I also told her that if there aren’t any improvements then I want to try a change in meds. BEFORE the next GI appt, which is 2 months away. I am just so sick and tired of these Drs!!! If they are so uncomfortable w/such a “high dose” then WHY AREN’T THEY WILLING TO TALK TO DR. PHILLIPS? Isn’t that part of being a Dr., do as much research so that way you can best serve your patients?!

My Pedi thinks that b/c the GI said so, that it’s the gospel. So ANNOYING! I guess I’m done venting…I’m sure there will be another one when the Pedi informs me she’s not comfortable switching meds unless the GI approves. So, be prepared.

[Anonymous]

Oh no!! Don’t apologize for needing to vent here! That is what this particular forum is FOR! And MANY of us have been down this road, including me, with meds. Landen’s first pedi & 1st & 2nd pedi GI reflused to go over 15mg prevacid & refused to go over 20 mgs nexium. And Landen had an awful time. Just as I was ready to drive to ANYWHERE on the planet to a new GI, we moved to MD and found a lovely pedi that gave us the marci-kids dose. We had a horrid time. At one time I was giving a PPI & Pepcid complete combo and he was still kinda miserable.

Good luck. I hope things get sorted out soon! And I hope your pedi *wakes up* and agrees to at least talk to Dr. Phillips. He is an amazing man, and I wouldn’t have survivied without the man’s advice!

[Anonymous]

To be blunt….I’d find a differnt Pedi and a differnet GI …..don’t feel bad about htis….you are your child’s BEST ADVOCATE!!!!!!

You have NO idea how many poor GI nurses I have screamed at on the phone….really….I had to get REALLY nasty!!!!! And then I apo;ogized only to have one very nice nurse tell me, “Mom, don’t apologize it’s your job and you do it well!!!!”

That was fantastic to hear. I had to do all that screaming on the phone when I had a crappy GI, I don’t have to do that now.

At one point I held Jedd while he was screaming bloody murder. The nurse had the adocity to ask me to put him donw and go in another room so she coudl hear!!!! LOL I told her NO this is what I am goign through 24/7 I will NOT put him down, you will have to deal with because I have to!!!! It worked….

[Anonymous]

Thank You Both! It definitely helps when their are others out there who have gone through this. I feel like everyone around me, except my DH, thinks I’m a nutbag. My Mom had the nerve to tell me that the Dr. knows best even though Averi is STILL posturing. She said to me, “Well, her posturing doesn’t last but a few seconds. I’m sure she’s not in that much pain.” Needless to say, I wasn’t the politest and hung up the phone. Outside of my DH, my Mom is the one person I thought would support me. It really sucks! I think everyone wants to pretend that there is nothing wrong so that they don’t worry. You know?! Atleast, that’s what I keep telling myself.

I was really starting to like my DDs Pedi, but this is ridiculous. TBH, I don’t even know if I’m gonna lower the dose for the 4 days. I might just not do it and say I did. Why should I put my DD through that?! She has been on the Stabs for a month now. Why not consider it’s the med and switch?! I doubt even if we get nexium she’ll be willing to increase, if need be. So, if we do get to try nexium, I PRAY THAT 20mg is GREAT for Averi.

As far as the GI…How would I go about switching to another GI in that office? Do I do it before her next appt? I don’t know what to do.

Just when I was learning how to get my DD to take her med w/o spitting it out at me…We may have to switch…You can’t win for losin…My Goodness! Alright, I guess there was another vent left in me. Must not have gotten it all out earlier.

[Anonymous]

I haven’t read everything totally, but I do agree with Jill, maybe try giving the prevacid in a.m. and early afternoon and then try a 1/2 of pepcid complete (get berry flavor, the mint is very strong) at bedtime? (it does need to be spaced 4hrs from the prevacid) That stuff is wonderful. I take it often at night when I wake up with heartburn and it is gone immediately. That way you don’t have to have a script from the doc and hey sometimes what they don’t know won’t hurt them if you know what I mean. Just a thought. And I wouldn’t try the decrease. I would say I did and it didn’t work (they won’t know anyway). Good Luck. I am so thankful that we were able to have a ped that listens to us. I do however think that b/c both DH and I are in the medical field we get away with more than most parents. Esp since DH is a pharmacist. I wish all parents were as lucky with docs as we were.

[Anonymous]

Will your ins cover any other GI if you want? If so, call that office and tell them that you are just having a few conflicts with that particular GI (You don’t feel like you are being heard, etc) and you’d feel more comfortable with another GI in that office. Be blunt if you have to, but be kind. 🙂

If you want to try pepcid complete in the meantime, let me know. PM me and I will pass on the instructions I got from Dr. Phillips, OR you don’t have to take my word, you can email Dr. Phillips (I won’t be offended, you may want to double check what the dose is for her weight is with him anyhow)

[Anonymous]

I think they’ll cover as long as it’s another GI in the office…BUT…I’ll definitely need to call to verify. When I got the referral it only listed his name. So, I just need to dbl check.

Thanks for the pepcid tip! I’ll be PMing you here in a sec.

[Anonymous]

I have switched doctors within an office. My feeling is that you do not have to explain anything. I would just plainly ask to make an appt with whatever doctor you would like to see. If they ask why, you could tell a white lie and say that someone highly recommended a particular doctor or you could simply say that you wanted a second opinion. I would NOT worry about hurting anyone’s feelings. I am sure that it happens all of the time and it feels like a bigger deal to you than it is to them.

Have you gone to a family doctor? We had so much trouble with our ped office, so we found a family doctor that prescribed the 30 mg solutabs to Jackson. We were desperate and he was the only one who had enough sense to make my son comfortable. He called a GI friend of his and we got a solid dose.

Anyways, I really hope that things improve for you and for Averi!

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