MARCI appt. or good doc?

[Anonymous]

Hi there, we live in Ontario Canada but are at our wits end with the doctors here. They know nothing!!

Is anybody here seeing anyone at MARCI?

If so how did you get the appt?

We could /would travel just about anywhere to find a doc that has a clue…our last appt with an actual ped GI was a total dissapointment.

Our daughters dose of omeprazole (prilosec) is totally inadequate and she’s suffering for no real reason other than an uninformed doc.

Cost of seeing a new doc is not an issue… we just want to find someone who will use the MARCI dosing guide and maybe knows about Zegerid.

If you have any suggestions please,please share.

Thanks

[Anonymous]

We’re in Toronto. We weren’t able to find anyone who would dose anywhere near marci-kids guidelines. My dd started at 7.5mg of losec a day, moved up to 10, then to 12, then 15, then 22, then 30 at around 10 months old when she weighed about 20 pounds. She had a full fledged feeding aversion starting at 2 months old, and still I went from doc to doc trying to get someone to prescribe her 30mg. We waited almost half a year to see someone at Sick Kids hospital. The only reason we got 30mg prescribed was because I told the doc that’s how much she was taking, and he agreed to continue the script. We’d seen about 5 other docs by that point.

Here’s what I’ve learned:

Most doctors here go by the dosing standards set out by the North American Society of Pediatric Gastroenterology Hepatology and Nurtrition which is also followed by Sick Kids Hospital. Sick kids doses somewhere around 3mg/kg, I believe, but things may have changed. The NASPGHAN is also in the process of changing their protocol, but who knows how much they’ll recommend. We had many appointment with a ped GI that were disappointing. I’d keep trying new docs. You can print off some information and see if anyone will listen… maybe your child’s ped will be willing to try.

About zegerid… no one will have heard of it here b/c it doesn’t exist in Canada. They’ll try to tell you to try a compound, but believe me, that there’s not a compounding pharmacy in all of Toronto who can make a compound correctly. That’s just by our experience.

The prevacid fastabs are available here as of a year ago or so, and they work quite well- only challenge is waiting the 30 minutes or so to feed after and to give on an empty stomach. Otherwise, you can get CaraCream here from marci-kids, but your doc won’t have heard of it, so it would be going on a leap of faith.

Good luck.

[Anonymous]

I totally feel your frustration! We went through a lot as well to get our DD on the right dose of medicine…and a correct one at that! The weird thing is that our ped. was VERY QUICK to diagnose reflux (we hadn’t even left the hospital yet!) However, she was very uneducated about the proper treatments of reflux! We did the compounded med. for about 6 weeks before I came across this site and realized it was NOT working!

It took us doing a lot of research on our own and presenting it to our ped. and then the pharmacist to finally get the proper dose of a PPI. Would it be possible to contact MARCI and have them call your local ped? I know some people have done that with success. While a visit to MARCI would solve a lot of problems, you will probably still want to feel comfortable with an understanding ped. closer to your home.

I’d try another doctor or two in your area and present them with the MARCI information, etc…keep pushing…don’t give up…and if it means making a trip to the US to get it done then so be it! I know how important it is as a mommy to want the best for your child.

Good luck and I hope you’ll find someone who will listen!!!

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