Drs not listen almost not caring

[Anonymous]

My daughter is almost 13 weeks and we have been to the ER 4 times already from her Choking from acid reflux and has turned blue on us 3 times. We have been to our reg Doc, to 3 GI docs finally found one that will somewhat listen. and we go to an ENT on Thursday. My poor girl has been through all the testing for acid reflux. They keep telling us it will get better but it seems like it is getting worse. I know it peeks at 4 months but she has been like this since birth. She is on ELLACARE for formula with simplythick to make it thick. She is on Previcid 7.5 mg once a day. Don’t know what or where else to go. Thank you for your help

[Anonymous]

Hi there. Sorry to hear about your girl. Don’t give up- we went through many docs not caring. You need to keep going until you find a doc who does care. If you tell us where you are, someone may be able to give a referral to a good doc. Things do get better, though unfortunately, it can take time. It does seem to peak from 4-6 months, and then get better from 10-12, though it can be longer (or shorter, I suppose on the positive side). 7.5mg of prevacid is a low dose. Also, how are you giving it? Check out laura’s intro stickied under the introduce yourself forum. Good luck and hang in there.

[Anonymous]

ours didnt get better until she was on 22.5 mg’s .. hopefully you can find someone to up it for you…

[hellbennt]

hi & welcome! you’ve found a great place!

the key to all of this is RESEARCH and, of course, support!

http://www.marci-kids.com is at the FOREFRONT of research of PPI use and dosing in infants/todders. You might want to start there to see if PPI dose is ‘proper’ (the dose you mentioned does sound low…)…

then, hop back here to learn HOW to get that proper dose, if need be, and what FORM of PPI and HOW to administer…

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

unfortunately, the majority of drs & pharmacists don’t know…babies metabolisms’ are much faster than adults, so the drugs work differently with them…

after medication, you might then want to look at diet (which it sounds like you are, as you are giving elecare)…

I have a LOT MORE TO SAY! and most of it is here:

Groupie Intro:

https://www.infantreflux.org/forum/forum_posts.asp?TID=853

it’s looong, but PLEASE read/skim/scroll through it & refer back to it, as it TRULY will help you!

so glad you found us!

~laura

ps: when you get a moment, please go to the upper right-hand corner of this screen and click on ‘settings’ and from there you can edit your signature and let us know how old baby is, what formula or breastfeeding, MSPI or not, what meds and what doses and form of meds and how you’re administering-thanks!

[Anonymous]

She takes prevacid solutabs. We live in the cleveland area and have been to UH Rainbow Babies and Children Hospital and we are now at the Cleveland Clinic. We feel lucky to have two major hospitals around us but at the same time I don’t think they are as aggressive as they sould be.

[hellbennt]

contact http://www.marci-kdis.com

Office Phone: (573) 884-0672

and see who they recommend there

[Anonymous]

Laura has a great suggestion!

I, too, think she’s on a low dose. Good Luck!

[Anonymous]

I am so sorry you are going through all of this. My daughter has turned blue a couple of times but it was only for a few seconds and mainly around her mouth and nose. The GI specialist we went to here in TX said not to worry unless she turns blue for more than 20 seconds. Is your daughter doing this for that long? I really hope you find a good doctor in your area. Good luck!
Deanna

[Anonymous]

Two times she was blue around her mouth and lasted for about 30 second but the one time it was her whole face was blue and it was alot longer than 30 seconds. Talked to the GI today and he wanted me to see the ENT before he does anything else because she is having trouble with swallowing, she aspirates on it and it’s silent. She has been choking more and more and Sat it lasted 2 min. but she doesn’t always turn blue and unless you are holding her or looking at her you would never know she was choking which is the scary part.

[hellbennt]

a swallow study can be ordered by the GI…this is where the mechanics of swallowing is looked at- aspiration will be seen (this is not an Upper GI)

[Anonymous]

Had that done. Thats where we found out that she aspirated. So he sent us to an ENT. Hope that she is able to help usdaburs2009-08-12 11:04:26

[hellbennt]

from all that I know (I’ve been on this board six years now), after it’s confirmed that there’s aspiration, then you are told HOW to thicken and to WHAT consistancy, using Simply Thick or Thick It…

I would DEFINITELY contact marci-kids!!

[Anonymous]

Is she being seen by an SLP or an OT to help you with how to feed? I assume that you’ve been told what consistency to thicken to in order to prevent aspiration.

s&h’s mum2009-08-13 10:13:13

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