Infantreflux.org | Hi! New here and a Q about Previcid

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August 24, 2006 at 11:44 am #12173

Anonymous
Inactive

Hi all

My DD is 11 weeks old. she has severe silent reflux, and we think it may be sandifer’s. she will be seeing a specialist soon, but in the meantime our ped has her on axid 3x day .8ml (she is 9 lbs, born 5 weeks early). i asked him to change it to previcid and he said it wasnt safe. but everything i read on her indicates that it is effective. so why would he say that?

she is on elecare formula for a milk protein allergy. she arches her back and seems to favor her right side of her neck. she rolls her eyes while feeding, coughes alot, and has the hiccups most of the day. it breaks my heart b/c i know she is in pain. she also has some bad gas! but at least she passes it. she does not sleep thru the night. we have tried everything to help her sleep, putting a wedge under her mattress and adding towels to raise it even higher, sleeping in the bouncer doesnt help either. the only way she sleeps well is in the car!

well, thats all i have time to write about. dd is calling for me LOL!

Joanna

August 24, 2006 at 12:20 pm #12178

Anonymous
Inactive

why would he say that?………

well it seems lots of doctors dont know how to effectively treat reflux! PPI are more effective and are very safe.

visit marci-kids.com and read through the medications sections (as well
as the rest of the site) it is an excellent resource! you can then fax
the info to your doc and that usually gets them to realize that PPI’ s
are in fact better!

otherwise, find a new doc!

my son is on neocate and since then became very gassy too. i was told
that those amino acid formulas have long fatty chains and that can make
the baby gassy.

nataliachick72006-8-24 12:20:45

August 24, 2006 at 12:51 pm #12182

hellbennt
Keymaster

sounds like sandifers. scroll through here to read about it: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1

welcome

August 24, 2006 at 12:53 pm #12183

Anonymous
Inactive

Hi Joanna. Welcome to the site. I’m so sorry to hear that your little daughter is suffering so much. My dd also had really bad Sandifer’s. I’m glad at least that you have a referral to a ped GI. When is your appointment with the GI? If you have a while yet to wait, another option is to get in touch with Dr. Phillips from marci-kids and ask if he will call your doctor directly about medication. If you do go that route, be warned though, that he will likely recommend zegerid vs. prevacid. I do not have his email, but if you’re interested, I’m sure that someone else can post it for you. Good luck.

August 24, 2006 at 1:17 pm #12186

Anonymous
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phillipsjo@health.missouri.edu

zegerid has been amazing for us!!

August 24, 2006 at 1:21 pm #12187

Anonymous
Inactive

Hello and welcome.

I’m sorry to hear your little girl is in pain. I’ve had two reflux babies, so I certainly know what you are going through; as do the other wonderful moms on this site.

You may want to read up on PPI meds (especially dosing information) at http://www.marci-kids.com and print the information and take it along to your appt. Many moms (including myself) have been able to convince reluctant doctors to prescribe appropriate doses of these PPI meds by sharing this research with their baby’s doctors. Pepcid and Zantac are H2 Blockers and don’t have the same rate of success in treating reflux.

The favoring one side of the neck may or may not be related to reflux; her other symptoms definitely sound like Sandifer’s and reflux, but some babies have something called Torticolis (not sure on the spelling). Does she always seem to keep her head tilted or facing to one side? If so, she may need some early intervention to prevent this from becoming too severe. My first child had this and we did some exercises to treat it.

Good luck and glad you found us.

August 24, 2006 at 1:34 pm #12190

Anonymous
Inactive

Torticolis

my son has that…..now we have to go to physical therapy 🙁

August 24, 2006 at 4:50 pm #12213

Anonymous
Inactive

It’s pretty common. Liza had it pretty bad. We were able to do the exercises at home and it only took a few weeks to correct the problem.

August 24, 2006 at 4:56 pm #12214

hellbennt
Keymaster

it (tortiolis) can also be a syptom of sandifer’s- jonah had it & it went away with the rest of his sandifer symptoms w/ a good dose of PPI- but yeah, it can be seperate from sandifers, too…

August 24, 2006 at 8:30 pm #12221

Anonymous
Inactive

thank you so much everyone. i cant begin to tell you how great it is to have this board as a resource. i have been a lurker for a while now and am so glad i posted!

i did read the marci kids site and it was quite helpful.

about the neck bending. she seems to favor keeping her head bent to the right and any time i try to move it the other way she freaks! she does move her head very well from side to side. i try to give her alot of belly time. any suggestions on exercises?

August 24, 2006 at 9:17 pm #12229

Anonymous
Inactive

my son is the same! thats why our ped sent us to physical therapy…..

she said its
Torticolis.

we havent started it yet though but once we do i can let you know what
the excersices are. im sure that he will hate them but they will help!

August 24, 2006 at 9:43 pm #12235

Anonymous
Inactive

Thank you everyone!!!!

Hannah’s head does not remain cocked in that position. It only occurs when refluxing (during a feeding or just in our arms) All of the other behaviors seem to be right on with Sandifer’s. The thing is that there also appear to be some ADR’s :Oculogyric Crisis…I don’t know if she presents JAw dystonia b/c it appears to occur when she is struggling to pass gas.

Anyway, I had called the docs and asked about the class of meds Prevecid is in (PPI’s) and they got back to me with info from the GI saying it wasn’t safe for the baby or chilkdren that age.

It is very frustrating for us!!! It’s hard especially coming from a research background and being in healthcare as a profession to take word for gold. I want literature, emprical evidence shown to me and for a doctor to accept what is presented to him/her.

It is so difficult especially in the middle of the night/early mornings (3-5)…..The witching hour when I will usually have her and to see her struggle.

I just wanted to thank you all from my wife, myself and our daughter.

Eric

Edoubleitk2006-8-24 21:45:41

August 24, 2006 at 9:49 pm #12236

Anonymous
Inactive

Edoubleitk wrote:

Anyway, I had called the docs and asked about
the class of meds Prevecid is in (PPI’s) and they got back to me with
info from the GI saying it wasn’t safe for the baby or chilkdren that
age.

this is soooo untrue!!

here is Dr. Phillips email address ( Professor at the University of
Missouri from marci-kids.com). you can email him directly telling him
about your situation. he will provide with all the info as to why PPI’s
are very safe and effective-he may even call your ped if you provide
the number.

phillipsjo@health.missouri.edu

good luck!

August 25, 2006 at 8:47 am #12256

hellbennt
Keymaster

Publications on PPI dosing: https://www.infantreflux.org/forum/forum_posts.asp?TID=2669&a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;TPN=1

from here: https://www.infantreflux.org/forum/forum_posts.asp?TID=6026&a mp;PN=1

August 25, 2006 at 8:57 am #12258

Anonymous
Inactive

Thanks!

I already bookmarked it and will be printing out all of the information to bring to the doctor.
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