New, and need some advice!

[Anonymous]

Hi,

I need some help. My 3 month old daughter has MFPI and GER, and my pediatrician isn’t much help. There isn’t a ped. gastroenterologist in my city either.

I have her started on Neocate, using Dr. Brown’s bottles, and ranitidine 3 times a day. The Neocate has helped greatly with the MFPI, but her reflux has been really bad lately. She’ll only eat about 1 ounce at a time before she is writhing and crying, and won’t eat any more even though she seems quite hungry. Then I spend about 30 minutes just getting the burps out, another 20 comforting her, and then the cycle starts all over again. At this rate, she hardly sleeps, and is very exhausted. So am I! Meanwhile, I’m trying to also take care of my 2 year old, and my husband works 12 hour days, so I’m doing it on my own.

Any advice? What worked for you guys? What should I try?

Thanks so much!

Sheri

[Anonymous]

we were in the same place as you! at 3 months i was fed up with zantac and H2 blochers as they are very weight sensitive and basically stop working. i contacted marci-kids.com after the people on this site showed me that very imformative website. Dr Phillips contacted our ped and we got prescribed a PPI!!! our ped had never even prescribed a PPI to a baby, but with my research from marci-kids.com and after talking to DR PHILLIPS (creator of zegerid) we got a nice high dose of PPI and my son becaame like a different child. no more crying at feeds, etc. the thing is , most docs underdose PPI’s to babies and they get no relief. marci kids has discovered that babies metabolize these meds extremely rapidly, so its important to have an adequate dose, otherwise it doesnt do much.
i would def. recommend asking about a PPI and maybe looking for another ped!!

ps- PPI;s work by shutting off acid pumps, where as H2 blockers are merely “acid reducers”.

nataliachick72007-3-2 19:34:28

[Anonymous]

Hello and welcome,

I agree with everything Natalia said. My first refluxer was never properly medicated and she suffered needlessly for 9 long months. She was impossible to feed, just like what you are describing. Fortuantely when I had my second reflux baby I found this site and http://www.marci-kids.com and I got my son on a good dose of Prevacid. That’s when things turned around for him. No more hour long feeding/screaming sessions. He began to eat like a normal baby.

I would suggest you print and fax the info from marci-kids to your current doctor and if that doesn’t get you anywhere, you may have to look for another doctor.

In the meantime you can try some Mylanta Cherry Supreme. Many of us use it for our babies. It can give some temporary relief, so maybe try it before a feeding. I’d start with 1 – 1.5 mls. (I was giving Myles 2 – 2.5 mls at 5 months old). It’s pretty safe….too much will cause loose stools so if you see that then cut back a little.

Be sure to look at Laura’s Groupie Intro (stickied in the Introduce Yourself forum). There’s lot of valuable information there that may help you.

Good luck and glad you found us.

[Anonymous]

Thanks for the tips, I will definately check out that website, and look into PPIs.

My pediatrician seems to be quite old school. He seems to think that as long as my daughter is growing and gaining weight, she will outgrow it, so I should just perservere. The entire extent of his advice was to make sure she is well burped and not to overfeed her!

Thanks to anyone who has advice to share!

Sheri

[Anonymous]

That just drives me crazy. So what would he tell an overweight adult patient? Well, you’re obviously well fed so just ignore your pain!? I know he’s a ped, so he doesn’t have adult patients. That may be part of the problem. In fact some of us have had better luck getting our babies on a good PPI dose using a family physician instead of a ped for that very reason. Family doctors seem to be more sympathetic about how painful reflux is because their adult patients can tell them how painful it is. So, keep that in mind if you have trouble finding someone to prescribe the meds and dose that your daughter needs.

[Anonymous]

Sheri…like Christine said..sometimes the family dr can be a godsend in these types of situations. It certainly was in my situation and we no longer talk to the pead about Alana’s reflux. Anytime I want to talk about reflux and meds I see our family Dr. actually I don’t think he knows to much at all…which means he has been more open to my suggestions and more willing to think outside the box.

Just wondering also what dose of Zantac you are using… you can go up to 10mgs per kilo (peads who are “old school” also tend to underdose this). Post your bubs weight and dose and someone will let you know wether it is too low.

[Anonymous]

My pediatrician suggested only 1 mg per kg, but I’ve been giving 2 mg per kg, based on a pediatric dosing guide book. Paige is about 6 kg, so we’ve been giving her 12 mg per dose, three times a day. Interesting…I didn’t know higher doses were recommended. I would be interested in seeing what doses others found helpful.

Thanks so much for the info!

[Anonymous]

At that weight Alana was having about 60mg…about 1.3ml of the syrup 3x a day.

The following is a NZ site and a little conservative on dosage…but still says up to 8mg per kilo

http://www.cryingoverspiltmilk.co.nz/MedicalTreatment/Medica tionwithDosages.htm

[hellbennt]

Groupie Intro: my intro: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1&TPN=1

[Anonymous]

I’d also try the PPI. The zantac didn’t help Hailey either. Whereabouts in Canada are you?… the maritimes? We don’t have mylanta supreme here, but you can use maalox. Just look for the liquid one without the aluminum.

Good luck.

[Anonymous]

You guys have been so helpful. We talked to our family doc today and showed him the info from marci-kids, and he’s given us a prescription for prevacid. None of the pharmacies in town have the solutabs, but our pharmacy is getting it in for Monday. Wish us luck! Right now the only decent feeds Paige is getting is if we can manage to get the bottle in her mouth before she wakes, and she drinks it half-asleep.

[Anonymous]

Good news, and good luck! Do you know what dose he prescribed? Too bad you have to wait until Monday.

Make sure you give her the solutabs on an empty stomach and follow it up with a feeding 30 minutes later. No one told me this and I was doing it wrong until I found out here!

I hope Prevacid is the miracle cure for your little sweetie like it was for my little guy.

[hellbennt]

and keep giving the zantac (spaced 2-5hrs apart from the prevacid) for a good 2 weeks until you can see the full effect of the prevacid!

[Anonymous]

Fantastic…I hope that it helps your little one. Did he prescribe at the marci-kids recco dose??

[Anonymous]

Well today we finally got the prevacid! Our family doc prescribed 7.5 mg 3x/day based on the marci-kids dose calculator. He’s a friend of ours, so he was really open to giving us the prescription based on the info we gave him from marci-kids. Hopefully we’ll soon have that happy little girl we know she can be! Please let this be the answer!

Lori – we are in Brandon Manitoba. Where in Canada are you? Unfortunately we only have 1 pediatrician here in Brandon (and he’s not been too helpful) and have to travel to Winnipeg to see a ped gastroenterologist. Hopefully we can get in to see him sometime real soon.

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