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I would love some input from you all on what is happening.
Evie is 8 wks old, and we suspected reflux since 3 weeks and were diagnosed at about 4-5 weeks and did the whole Zantac, Nutramagin, Upper GI, Prevacid 15 mg (7.5X2) There has been NO relief with any of it. I should say that I quit bfing for over a week to go on Nutramagin, but am back to BFing on TED. So, I call my ped. daily to ask him to put us on the marci-kids dose, which would be 7.5X3 for her age/wt. He thinks our situation is getting a little complex for him so he referred me to the Ped. GI (1 hr. away and appt. set for not until 6/1/07) My ped, who is very nice and sympathetic says that he will work with me but would like to consult with the Ped. GI re: meds if that is who will be ultimately treating Evie’s reflux. Anyhow, it took a week for the Ped. GI to return my peds call and this is what he told my ped:
15 mg of Prevacid is already too much for my 8 week old and 22.5 is obsurd.
He directed my ped to order a head ultrasound (?) to rule out anything in her head. This is devastating to me.
He directed my ped to order a collection of stool samples for lab analysis to see if there are any dietary intolerances. This I can deal with.
I have been calling for cancellations daily to the Ped. GI and they finally scheduled me for next thursday (5/4) with the Nurse practitioner (I’ll take what I can get and she’s probably nicer anyway
. ) I guess I’m wondering, how did you approach your Ped GI’s with the marci-kids stuff? Were the initially open to it? Can anyone recommend a GOOD Ped GI in Florida, I’ll drive there. Im in east central FL right now. MY baby continues to suffer ALL day, everyday. The crying, back arching, lip smacking, hiccups are constant. If it’s not one of her 5 full blown tantrums, it’s keeping it to a heavy fuss, but never is she quiet/content. My baby is happy from 8-8:30am and it’s all downhill from there. Anyone???I hate that you and Evie are going through this. It makes it so much harder when doctors aren’t willing to work with you. Here is what we did in order to get Addy on her correct dosage for her age/weight per marci-kids. I printed off all the info that I could find on it…some was from marci-kids and other was from different sites. I wanted the doc to see that I was serious and not just going by one site’s recommendations. It took some convincing but it worked. I highlighted the notes and everything and knew my stuff when I went into the appt. I studied harder than I ever did in college.
haha So she would know that I was serious about getting addy some relief. She went for it and we never looked back. She asked to keep my notes and print offs which made me feel great! Of course, she was wonderful about it (she is our pedi now not a GI). After being on the Zegerid 10-12 days, Addy was a different child. I had watched her suffer for 7 months and finally she (and I) had some relief. It was wonderful! I did go through tons and I mean tons of doctors first. This pedi was the 4th we saw in our group. I actually had just been to the same doctor’s office the day before to see another doctor who was awful to me and Addy. So when I checked out, I made another appt with our current pedi. Good luck and I hope the practitioner works with you and LISTENS!
I feel very sad that you are going through this. I remember the torture all too vividly. Ellie never got proper treatment and she suffered needlessly until she finally outgrew her reflux at 9 months. It still kills me that I didn’t do more for her.
With Myles I was fortunate to find this site and marci-kids so at least I knew what he needed. Getting it was not easy though. I am more fortunate than many moms here in that my family doc is a wonderful doctor who really listens, but still it took me weeks to convince her to let us try the marci-kids dose. I did just what Tracy did. I printed the marci-kids info and faxed it to her with a cover letter stating that the current dose was not helping and then I called and called and called to report how miserable he was. She finally relented and as soon as he was on the right dose things turned around.
Here’s one of the documents I sent and I think it had some impact.
http://www.marci-kids.com/pdfs/dosingppis.pdf
I can’t help but think that the gi you are going to see is already fixated on the idea that the high ppi doses are “absurd” so I fear you may not get anywhere with him. And I think the nurse practitioner will have to consult with him to prescribe anything. Do you have a family doctor you could try?
Laura reccommends someone in Miami. Can you drive that far? Here’s the link…
https://www.infantreflux.org/forum/forum_posts.asp?TID=660&am p;PN=1&TPN=2
Good luck. I really feel for you.
Everytime I hear a story like yours it just takes me back and breaks my heart. I took all the marci-kids info to my sons doc. and she just put it aside and told me she knew what she was doing. So, I asked to go to a ped gi. I thought he would know more and would actually help us. Didn’t happen.
He told me I needed to stop bf. So, I left there and never looked back. I ended up having Dr. Phillips from Marci-kids call my doc and that is how we got Justice on zegerid and the correct dose. I would also personally recommend increasing the dose yourself and see how it goes. There is not any better proof than trying it and it working. Also, don’t worry about running out too soon. Your doc probably won’t know the difference. Just call for refills like normal. My sons doc. never questioned me when I called for refills and I did all the increases myself. My sons doc thought we should just stay on the first dose and never increase it. WHAT A JOKE! Don’t forget you are in charge here. You have the meds and don’t need the docs. permission to increase it. That is just me though. 
I’m sure your baby does need to be on the higher dose, but also have you been doing the wait 30 min to feed and also giving on an empty stomach? Also what kind of prevacid are you using and are you splitting the dose?
This will get better, but prepare to fight.
Justice’smom2007-4-27 21:57:50
Maybe fax the info to the doctor before our appointment? this way it’s ‘on record’ with the doctor, as you’ll be seeing the nurse practitioner…maybe fax a little blurb/letter- short & sweet & attach other documents (research) to your note.
start off and THANK the dr
for all that he’s doing!. then state facts: evie’s age, weight, symptoms, (if she has any Sandifer Symptoms – see section from ‘groupie intro’-, ‘wow’ the dr with that , harumph), current dose of meds, what relief seen if any. then just state “prevacid dose is __mg/kilo & she’s on _mg/kilo, so her prevacid dose can be increased to ___. please see attatched information” thank you . can’t wait to meet fabulous nurse practionerthere are more resrources than from the Marci-kids site (I think there are some links in Groupie intro- if not we can help you find more)
sorry about that…as I was saying, I printed the marci-kids stuff and took with me to this GI in tampa and they ignored me and sort of laughed. They have students working with them that sort of do all of their legwork. They keep telling me 15mg is a “high” dose. I can tell when the prevacid is helping and when it “wears off” on Landen and since he has milk protein allergy it is irritating his stomach. He has runny green poo again like he did when we discovered the allergy. I called them and guess what they think it is? HIS FORMULA! Nevermind the solutabs that have lactose in them….it’s his formula that he’s been on since he was 2 weeks old!
SOrry to gripe along with you, I just didn’t want you to go to this place!!! I’ve spoken to 3 doctors there and one that I spoke to on call today recommended ZANTAC which is in notes that he did terrible on! I hope we can both find a good GI in FL soon. Let’s keep in touch K? Hugs to you and Evie I feel your pain and sleeplessness.Yes I will!
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