Need advice before GI appt

[Anonymous]

My first appointment with the GI went ok. He believed dd had a MPSI and we went from Zantac to Axid. He also wanted her to get off Alimentum and start Neocate. After a month of trying different things, we gave up on the Neocate. DD would not eat it. We have had two feeding strikes. The drs on call suggested I increase her axid dose each time. DD then started to do better for a good month. She upped her total intake and we were able to space out her feedings to every three hours. Now two months later, dd’s symptoms are bad again. So, I have another appointment tomorrow. There are a few things that I have questions about. For instance, I think dd has sandifer’s syndrome. On three occasions she appeared to lose consiousness. All three times she was lying down after a feeding for a diaper change. She had her head turned, stiffened up her body, and would not open her eyes. It looked like she lost consciousness. DD also turns her head to her left, stiffens up, and arches herself back right after eating. DD was diagnosed with reflux at one month old she is now 6 months old. I need to present a strong case to my GI dr. He is very conservative. I KNOW she needs a PPI. I wrote everything down that I could think of. I am trying to be really prepared so he will take me serious. Does this seem like Sandifer’s? I don’t know what else to tell the dr that I might be leaving out.

[hellbennt]

Yes. sounds like sandifers. I would FAX the doctor!

use SANDIFERS as a STATEMENT (not a guess or ‘I think’ just: STATE THAT SHE IS EXHIBITING SANDIFERS AND SO THEREFORE ZANTAC OR AXID- the SAME KINDS OF MEDS- ARe NOT WORKING TO ADDRESS HER SANDIFER SYMPTOMS & IT IS NOW NECESSARY FOR A PPI)

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

About faxing the doctor (& more): https://www.infantreflux.org/forum/forum_posts.asp?TID=2841&TPN=1

[Anonymous]

Get pushy……don’t ask tell them you want a PPI.

[Anonymous]

*Jessica* wrote: Get pushy……don’t ask tell them you want a PPI.

I agree, I know it’s a bit intimidating to tell a specialist what to prescribe but sometimes you need to.

You also may want to check out some of the research papers/Journal articles on the MARCI-kids site. You may find that printing and sharing them may help you.

[Anonymous]

It’s so frustrating, I know. Especially when you know your LO is in pain. DD was already on Zantac and they kept increasing dosage, but not much help. After 3 times of that I simply said I would like to try Prevacid now because the Zantac isn’t working. I also faxed the marci-kids information to the office before I went to the appointment (so they’d know I was serious and was doing my research). And it worked.

I know some have had luck requesting their regular pediatrician to prescibe the PPI. And I remember reading the suggestion to try a regular “family” doctor…they seem to be more empathetic with GERD because they know how much pain it causes in older patients that can explain themselves. Maybe worth a shot if your ped GI won’t prescribe?!?!? Or change to a different ped GI if they won’t prescribe at this appointment?

Let us know how it goes!

[Author]

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