Defying the Dr.

[Anonymous]

We were back at the GI last week who flat out told us he is “conservative.” He did up my son’s meds but not to the marci dose and as far as we can tell, not enough to make a lasting improvement.

Can anyone tell me, do PPI’s “wear off?” Do they lose effectiveness the closer it gets to the time for the next dose?

My husband and I are ready to take matters into our own hands. Either by trying 3 doses per day or upping his doses. Obviously if we do that we are going to run out of meds before we should which would make it tricky to get a new Rx.

For those of you out there who have played around with your child’s dose on your own… how did you handle it once you had to go back to the Dr.?

Also, the GI said to try this dose for 2 weeks (we are only giving it a week though, the meds are already in his system) and then he might want to do another ph probe – this time on the medication.

I understand his point, he wants to see if the meds are helping but I’m torn. Collin just went through that study 3 weeks ago. I don’t know if we should play around with meds first or if we do the study, will it show that the meds are working, but he still needs more. Does anyone have any experience with off/on medication ph probes to compare?

Better yet, anyone have any advice on which way we should go?????

Thank you!

[Anonymous]

Find a dose that works and go to your primary care physician or a relative and have them write you the script!!!! or go to your gi and say there is ay the amount of meds you gave my chils, for eg if they spit up or the liquid drips out of the syringe…..say to them this might not last 30 days, then ask for a larger amount for lee way.

It took us from 3 mo until 8 months to find a dose that worked and a combo that was affective!!!!!

[Anonymous]

I would play with it and then if your ped is good they will be willing to write the script. I was fortunate that my gi let me up to where I wanted and then I told my ped and she wrote us the script, but I know that doesn’t happen all the time. Good Luck.

[Anonymous]

You are lucky to have such a good GI. Seeing as mine admitted that he is conservative I don’t think we’ll have the same luck.

[Anonymous]

If you tell us where you’re located, maybe somoeone here can recommend a good doc. I went through almost every doc in the city it seemed until we finally got Hailey on 30mg of prevacid. By that time she was about 10 months old, so it was not easy. I know how frustrating it is.

Aside from being conservative, I would question whether or not the other part of the problem is that it’s a compound. If you haven’t already, you might want to check out the thread about compounded PPIs stickied under the medications forum. Making a compound correctly is very difficult. It can’t have any flavouring, and each dose should be at least 3.5ml per dose to ensure enough buffer, among other specs. Good luck.

[Anonymous]

Thank you –

We live in Lititz, PA. I am pretty sure the pedi GI we see is the only one in our county… lucky him.

Collin used to be on prevacid solutabs… but only 15 mg per day. I wonder if we weren’t better with that…. but upping the dosage.

I am pretty sure our compound does not have any flavoring but his dose is only 2.5ml.

HOW DO I GET THE DR TO UP IT?

[hellbennt]

well it’s more than ‘just’ not having any flavoring to it…

check here: Prevacid 101(last post on the page): https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

as far as getting the dr to up the meds:

1) get another dr; travel if you have to!

2)try your ped

3) try a family dr

4) FAX your dr (ped GI) and make it short & to the point, w/o any ‘feelings. ‘ first THANK dr. then state facts. baby’s weight. baby’s symptoms. then just STATE that “currently baby is taking ____mgs per kilo and it isn’t working- see symptoms stated above. I hereby request dose to be increased to a conservative ‘high’ dose of 3mgs per kilo, making baby’s dose be ____. ” THANK again.

then fax & call office to say fax was sent. then call again to follow up on fax.

you can also just state in above fax that you have increased dose to ‘conservative high dose of 3mgs per kilo & have seen good results. Please write the prescription for this dose. THANK YOU.’

[Anonymous]

Stacey,

How many mg/ml is his current compound? My guess is that his overall dose of prilosec is actually LESS or the same than the 15mg of prevacid he was getting a day. If his solution is made at 3mg/ml then he’s getting 15mg of prilosec a day. Either way, I’d check out the link and see with the pharmacy if it’s being made that way. We had a really hard time with the compound.

Good luck.

[Anonymous]

Here’s the link:

https://www.infantreflux.org/forum/forum_posts.asp?TID=6026

[Anonymous]

His current compound is 2mg/ml

We figured that out last night… when Dr. switched him to prilosec we actually took a step backwards.

We are so emotional overwhelmed right now that we didn’t catch that a few weeks ago. I sure wish I had.

I have calls in to the Children’s Hospital of Philadelphia, to get another opinion, and to my pediatrician to run this all by him.

With everything I’ve been reading, I feel there is more my current GI can do for Collin. I need another dr. to tell us that and find the correct dosage.

Thanks for your input… I agree with you.

stacey

[Anonymous]

Hi Stacey,

Sounds like you are on the right track! I just wanted to say that I tried and tried to get two different pediatricians (plus a ped GI with my first refluxer) to give me the Marci-kids dose, and they wouldn’t. I just had to keep looking to find a doctor who would. I was never able to convince one, but I found a pediatrician who was already familiar with the current PPI dosage research. Don’t give up!! Load up the car and drive wherever you have to 🙂 You will be so glad you did. There’s a listing of recommended doctors under the “Physicians” forum, I believe. Maybe you could scroll through it if you haven’t already?? That said, I really hope you’re able to convince your current doctor. Just don’t be afraid to cut ties and move on when you have to. I had to leave one practice that I really liked, but you do what you’ve gotta do….

Also — before I found the doctor who would write the higher prescription, I used leftover Prevacid from my older son’s reflux days to give my second son the dose he needed. I even called and got the pharmacy to contact his old doctor to give us 3 more refills (of 15 mg), even though he outgrew reflux over a year ago. I saw where you mentioned that your son was previously on Prevacid solutabs. Is it possible that you could call in more refills and switch him over to a Marci-kids dose of that at least in the short term, and forget the compounded Prilosec for now since you feel it’s not helping much anyway? Then maybe let the doctor know you want a prescription for say, 30 mg of Prevacid solutabs (assuming you try it and it works great??)?? Just wondering….

Good luck!! I hope everything works out soon for you and Collin 🙂

[Anonymous]

Hi Paula,

Thanks for your encouragement. I spoke to my pediatrician the other night and ran everything by him. He said that peds and GI’s in our area go by the Hershey Med. Center dosing and their highest is 2.8mg/kg. He figured it out for Collin’s weight and told me to go ahead and start giving him that. He said if the GI wants to yell – he can yell at him. It’s not the marci dosing but is it a step in the right direction.

We go for Collin’s 4 month check up on Tuesday and I’m going to talk to him about going back to the prevacid solutabs – I just don’t feel comfortable after reading all this about the compounds. We also have an appt. on December 10th down at the Children’s Hospital of Philadelphia. I’m very interested to see what that dr. has to say and what he’s willing to do.

We do see a slight improvement… but that has been Collin’s pattern all along… we make a change and he seems to improve and then within a week he’s back to not doing so well. (I wonder how much of that has to do with the stability of the compound????) So, we’ll hang out until Tuesday and then see what ped. says.

Thanks!

[Anonymous]

Stacey which doc will you be seeing at CHOP??????

we saw dr boyle who was very conservative and I had to drag him to give my dd a ppi but by that point, my dad, a physician was writing the script for her.

[Anonymous]

We are seeing Dr. Lacourios. I remembered you said Dr. Boyle was conservative.

[Anonymous]

Its sounds like your paed is a bit more flexible. I would probably keep working on him, he sounds more open minded. In the end it was my family dr who prescribed the marci kids dose for Alana…sometimes they can be the most flexible of all (particulary when you dissolve into tears).

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