help a new mom

[Anonymous]

my daugter just turned 5 months old. she is on reglan,zantac,and siezure meds. in dec. we took her to the er because she was chocking on her spit up and turning blue. they said she had acid reflux,apnea,and we found out in jan. she is having siezures she is still spitting up. we went through 6 different formulas. shes now on enfamil ar. before the ar she would literally puke after eating. the doctor says it’s normal but i’m not sure. she has no trouble eating. she actually eats to much. 1 jar of baby food andabout 30-48 oz. of formula(on a bad day). she seems not to be able to get full somedays then screams with gas all night.

at night she throws her head every which way and throws her neck back. she has also had very very bad gas. we’ve tried working her legs to gas meds. has anyone got any advice for me? she is my 1st so i’m new to mothering.

billycarrie19842006-3-31 1:16:39

[Anonymous]

Hi and Welcome,

Laura will send you her welcome intro which has literally a ton of info that will be useful to you. Here are a couple of my thoughts…

Refusal to eat it a huge sign of reflux, but babies can have severe reflux even if they eat frequently and a lot. My son was like this.

Without knowing all the details, it’s hard to say how much the reflux is affecting things…however, most babies with bad enough reflux end up going onto a ppi drug becuase Zantac just really isn’t a strong enough med. Reglan can also have side effects, although some babies are clearly helped by Reglan. I would check into whether your baby’s dose of Zantac is really high enough, and whether maybe she is a good candidate to go onto a ppi drug, like prevacid, prilosec or zegerid. There is also a formula that is called NEocate, and babies who cannot tolerate ANY other formula, can usually tolerate Neocate, although it sounds like she is eating fine now from your message. Here are some links, but Laura’s intro will help you with all these questions and more!

http://www.ppiknow.com

http://www.marci-kids.com

MARCI kids website will help with general info and ppi dosing info.

I hope things are looking up soon!

[Anonymous]

i wonder alot of the time if the magnesium didn’t do this to her. (i went into labor at 32 weeks and they held me off until 37)

[hellbennt]

hi there,

welcome!

I’m the aforementioned Laura

is it possible that the seizures are from Sandifer Syndrome? THere’s info about this, and lots more, from my welcome/intro: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1&TPN=1

glad you found us!

~laura

[Anonymous]

I am the mother of a gassy lassie myself. It is WAS so painful for her. I would literaly push on her stomach and she would toot or burp. She also had major blowouts and mucuosy stools. Turned out she was reacting to the formula, (she also couldn’t tolerate my breatmilk after elimination diet). She is mspi, milk soy protein intolerent. It really even made her reflux worse. Once she was on the right forumula she got better. Took a couple weeks though because the intestines were soooo irritated. The formulas for mspi babies are usually nutramigen and alimentum (some milk broken down) or corn based formulas: neocate and elecare (order from the internet). Might want to ask the doc about the mspi thing. Have a ped gi yet? He can give you samples.

Again, it takes time for the milk to leave their systems. We tried every forumula in the book until we went to neocate.

[Anonymous]

what is this about mylanta that i keep reading? can u give that to babies?

[hellbennt]

from the above link (my welcome/intro- you might want to

bookmark it and come back to it https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;am%20p;am%20p;PN=1&TPN=1)

there’s some info about mylanta: https://www.infantreflux.org/forum/forum_posts.asp?TID=149&am p;am%20p;KW=michelle

[Anonymous]

Did you try thickening the other formula that you tried? We use nutramigen thickened with rice cereal which is the hypoallergenic version of enfamil ar!

[Anonymous]

I really hope that you don’t mind me asking but I was wondering what kind of seizures your daughter has been diagnosed with, and why they suspected seizures in the first place. What signs did she have? I’m asking b/c we’re scheduled for an EEG to rule out seizures next month- we think it’s Sandifer’s.

[Anonymous]

It sounds like Sandifer’s syndrome. I’d read several stories like yours and I bet if you quit the Reglan and Zantac and go to a high dose of a PPI drug (Prevacid or Zegrid). The seizures will stop. The twisting and arching comes from the acid burning the esophagus. The acid also can cause swelling which can inflame the larnyx and make it hard for them to breath, so the have to arch and twist to get an open airway (see post about Laryngomalacia). You daughter sounds just like my son before he was on Prevacid.

In case you didn’t know (I only found out when my son turned two!). Zantac is an H2RA – it blocks acid with a layer that sits on top of the stomach acid. PPI drugs actually SHUT DOWN acid pump, reducing the amount of acid that is made. Mylanta coats the esophagus and also blocks acid, especially helpful before bedtime.

[Anonymous]

Marsha, I hope this doesn’t come across as sounding rude but seizures and Sandifer’s are not the same thing. Sandifer’s would not cause an abnormal EEG, and that’s why they do the test to rule out seizures. I know that they can present similarly, but seizures do not always present as arching and twisting, and seizures can require treatment. Just because a child has both reflux and seizures, does not mean that it is Sandifers, and while it is possible, I think it’s unwise to suggest that this is the more probable option.

[Anonymous]

Marsha,

Just to keep things accurate here, I need to say that that is not quite accurate about how H2RAs (aka H2 blockers) work. They actually do stop acid production, just not as effectively. They do not coat or sit on top of the acid. The H2R in the name stands for Histamine type 2 Receptor, and the A stands for Antagonist. The parietal cell in the stomach contains the proton pumps which produce stomach acid. The parietal cell has receptors that recieve the signal to begin acid production. An H2RA blocks the primary receptors so that the cell does not get this signal. The problem is 1) the body quickly develops a tolerance to these drugs and so they stop working, and 2) the parietal cell has other kinds of receptors that can still receive the message to begin acid production.

PPIs on the other hand, work by permanently blocking the acid producing proton pumps that are contained in the parietal cells, thus eliminating the last link in acid production. The body does NOT develop a tolerance to PPIs, but they are a weight dependent drug.

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