How?

[Anonymous]

Do you get a pediatrician to pay attention to the information on the Marci-kids site?

[hellbennt]

you tell ped you need a referral to a ped GI. tell. don’t ask.

it’s hard but you gotta do it.

if ped won’t, then find another ped.

or just call ped GI & see if you even need a referral…

in the meantime, you print out the info from marci-kids. you show the research. you FAX your request.

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? THANK YOU

sample fax: https://www.infantreflux.org/forum/forum_posts.asp?TID=10633&PID=90325#90325

[Anonymous]

Jennifer, having been there…. to be honest, in Canada, at least in Toronto, I can say that not a single specialist we saw would pay attention to the information on the marci-kids site.

I asked Dr. Phillips about it- I asked why their research hasn’t been considered the gold standard for dosing by NASPGHAN (the association that most ped GIs use for standards of care). If you go to the marci-kids website and look at patient stories or something like that (it’s one of the links on the right hand side of the page) you’ll see one of the emails I sent Dr. Phillips about this and his response. I’m actually interested to see the new NASPGHAN guidelines, as they’re currently being revised.

I think that the best thing you can do is to get Dr. Phillips to call your doctor directly. It’s easy for them to ignore you- really, if I was a doctor and a patient brought in information from the internet, I would also probably respond with “you can’t believe what you read on the internet, the recommended dose as per commonly accepted guidelines is…”. BUT I’ve heard that Dr. P. is very passionate about this, and passionate about helping kids with reflux, so when he talks to doctors, I’ve yet to hear of a doctor who hasn’t gone with his recommendations.

If you want them to address marci-kids dosing etc, then that would be my recommendation on how to get the fastest results. I showed the research to: my ped, our first GI, our second GI, our third GI, a feeding doctor, a pediatric psychiatrist afiliated with the reflux unit, the GI/feeding team at Sick Kids hospital, and NO ONE would acknowledge it.

[Anonymous]

I actually was able to get out Ped to listen, maybe she’s better than I originally gave her credit for?

I opened with telling her about Jeffery and his credentials about his development of the drug Zegrid and why/how it was developed his research at the university of Missouri and the Midwest Acid Reflux Children’s institute. I printed an LA times news story re: zegrid development as well as the story posted in the Mizzou news.

Then I told her I’d been in touch with him about his recommendations and that he’s been kind enough to send us the carrier required to make a suspension of the Prevacid capsules. We haven’t touched the dosing yet – I’m more concerned with getting her on the right drug first.

We are getting referred to a GI, they are going to do a Barium Swallow and have an OT assess her to insure that her brain is getting the correct signals to her body for effective suck and swallow (concern about her underlying neuro condition). Personally I’m not as concerned about it going down – that doesn’t seem to be the problem – it’s the coming up but they’re just looking at her medical reports/history they don’t see what’s actually happening the tests will most likely just confirm what I’m seeing.

Jsquared2008-10-21 13:33:34

[Author]

Posts