i am so tired of the demon and i know rachel is too. just when we think it's under control, it pops back up worse than ever. our ped got us in with the GI doc monday. right now she is on enfamil AR and prevacid adult dose 2 x a day. she wants to constantly eat to make herself feel better and she is arching and hiccuping all the time again. what should i talk to this doctor about? what kind of tests should i be looking for him to do for her? how about medicine? my poor girl cannot sleep good, she is constantly waking up and she cannot even "exercise" as soon as she is flat on the floor, the reflux makes her life a nightmare and she just cries and cries. this is more of a vent than anything. i know i've talked abut this before. i just am sooooo tired of this, i just want her to be happy and to be able to play like a normal little baby should be able too.

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Maggie, mom to Rachel (9/19/09), duadenal atresia repair on 10/26/09, VSD closed
www.maggiefluck.blogspot.com

How much is she eating and how often? We fed super small meals...max ever was 4 oz. I'd ask if an add'l drug is warranted. All we did for testing was an upper GI to make sure there was no other malformation. They laid him flat on a bed and fed him barium....who doesn't reflux laying flat?? I'd also be prepared that it's not going to go away this week. Some kids w/reflux take a good long while to kick it, it just becomes part of the deal. I hope you get some of the answers you are looking to find.

Kara wrote:

How much is she eating and how often? We fed super small meals...max ever was 4 oz. I'd ask if an add'l drug is warranted. All we did for testing was an upper GI to make sure there was no other malformation. They laid him flat on a bed and fed him barium....who doesn't reflux laying flat?? I'd also be prepared that it's not going to go away this week. Some kids w/reflux take a good long while to kick it, it just becomes part of the deal. I hope you get some of the answers you are looking to find.

at one point last month, before she got sick, she was up to 4/5 ounces max. now she eats sometimes 4.5 ounces or she'll just graze all day. she's been grazing all day today. and there is no taking away the food from her if she wants it...she screams and screams and that makes the reflux worse. i know it's not going to go away as soon as we see the doc. it took about 3 days for her prevacid to work. i just want some answers.

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Maggie, mom to Rachel (9/19/09), duadenal atresia repair on 10/26/09, VSD closed
www.maggiefluck.blogspot.com

Is she constipated at all? That was a big part of Mark's problem and definitely made the acid reflux worse. We'll be praying for her - poor thing - I hate this crap too - been dealing with it for two years now and it will be under control for a while and then just when you think it might be over you're back to square one again - uggh. I do have to say that getting the constipation under control was a huge help although not a cure-all by any means.

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Maureen - Mom to Daniel(21), Brandon(19), Jordan(13)PDD, Thomas(11), Carrie(7), Samuel(4) and Mark (almost 2 - ds)
https://www.carepages.com/carepages/MarkEdwardC32708


"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." Mother Teresa

Momtoseven wrote:

Is she constipated at all? That was a big part of Mark's problem and definitely made the acid reflux worse. We'll be praying for her - poor thing - I hate this crap too - been dealing with it for two years now and it will be under control for a while and then just when you think it might be over you're back to square one again - uggh. I do have to say that getting the constipation under control was a huge help although not a cure-all by any means.

no, i don't think she is. her poo is like PB but no hard bits or blood or anything. she poo's once a day and she's done that since we went to formula.

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Maggie, mom to Rachel (9/19/09), duadenal atresia repair on 10/26/09, VSD closed
www.maggiefluck.blogspot.com

I just remembered that Brooker had to be swithched to a different formula when she was itty bitty. Augmentum (sp) I think that was the name. Someone help me out if that is wrong plz From what I remember it was pre digested and it sure helped ALOT w/ her reflux.

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Jennifer, Momma to The Brookster 3 yrs old
www.specialneedsinmolalla.blogspot.com
www.foundalongthejourneythroughholland.blogspot.com

We have been battling the reflux demon too...
You are on a super high dose of prevacid. 15 mg max recommened for pediatric dose. Recently I upped Ragan's dose and it made things worse, not better. I FINALLY got the dr to write him a script for a different PPI, we are now on Nexium, for about a week now, and things have improved, not perfect, improved. He is getting some constapation from it so we are going to play closer attention to his diet but he is sleeping better, less reflux and acid smell. You may actually want to cut down on the dose or switch PPI's.
We have a sleeping wedge in the bed, and we use on for a diaper changing area. He is rarely flat and hated tummy time when he was little. Once he started sitting and figured out how to sit up I could never get him to lay on his tummy.
I hope you get some answers soon. Just remeber, you can not cure reflux, only ease the symptoms.

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New Mommy - Ragan is my one and only.....

With my little guy Nathan I found it helped alot when we switched formula's. We went to the Nutramigen A+ (made by Enfamil) for babies with cow milk/protein allergy. It made a huge difference for him! Now he still needs his prevacid but I noticed a big difference when we switched.

He isn't allergic to milk but he is lactose intollerant. When we went to a friends for a playdate Nathan snuck a sip from his little buddy's sippy cup. And well it had milk in it and he spit up everywhere. When he was younger we had found out about the reflux from his screaming and arching of the back, he was never much of a spitter. So the fact that he spitted up right away after sneaking a sip from his friend reinforced that we made the right choice for him.

I don't know if it would be the answer for your little one but thought it might be worth mentioning. Hopefully she gets some relief soon!

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Lyn - wife of Brian mom of Kris (12-03-97) Mykaela (06-24-99) Nathan DS (05-12-08 )

rachel is now on bethanechol 3 times a day along with the prevacid. she goes back in two weeks for a follow up. i hope this helps. poor girl.

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Maggie, mom to Rachel (9/19/09), duadenal atresia repair on 10/26/09, VSD closed
www.maggiefluck.blogspot.com

Mark is on the same thing. According to Mark's GI it can take up to 3 weeks to work. I hope it works for her!!

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Maureen - Mom to Daniel(21), Brandon(19), Jordan(13)PDD, Thomas(11), Carrie(7), Samuel(4) and Mark (almost 2 - ds)
https://www.carepages.com/carepages/MarkEdwardC32708


"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." Mother Teresa

Momtoseven wrote:

Mark is on the same thing. According to Mark's GI it can take up to 3 weeks to work. I hope it works for her!!

OMG! our doc sad 3-7 days!!

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Maggie, mom to Rachel (9/19/09), duadenal atresia repair on 10/26/09, VSD closed
www.maggiefluck.blogspot.com

Okay was just talking to my doctor today and mentioned to him about Nathan's reflux acting up. So now his dose of prevacid has gone up and he gave me the address to this website. I thought you might like to check it out has well..I haven't had time to peek at it yet, but wanted to pass this on for you..

www.marci-kids.com

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Lyn - wife of Brian mom of Kris (12-03-97) Mykaela (06-24-99) Nathan DS (05-12-08 )

Momof3monkeys wrote:

Okay was just talking to my doctor today and mentioned to him about Nathan's reflux acting up. So now his dose of prevacid has gone up and he gave me the address to this website. I thought you might like to check it out has well..I haven't had time to peek at it yet, but wanted to pass this on for you.. www.marci-kids.com

thank you, it's interesting! i'm not sure about that drug though...i have never heard of it. what is nathan's prevacid up to now? are you seeing a GI doc?

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Maggie, mom to Rachel (9/19/09), duadenal atresia repair on 10/26/09, VSD closed
www.maggiefluck.blogspot.com

We are trying Nathan with 15mg twice a day, and my doc said we could go up as high as 4 times a day. I'm not sure that is the answer. We don't have an appt. with a GI doc. and I'm not sure I want one.. My friends daughter will be going in for a fundoplication soon, and I don't know that Nathan's is bad enough to warrant that.. When I take Nathan to our Down Syndrome Clinic, the Ped. is amazing!, I will bring it up with her and go from there.

By the way thank you for starting this post. I wasn't sure that Nathan's fussyness was reflux, I thought it might be teething. But the comment on them rubbing their little nose, tipped me off..He does that alot, poor little guy..

Hope your princess starts feeling better soon, she is just soo cute!

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Lyn - wife of Brian mom of Kris (12-03-97) Mykaela (06-24-99) Nathan DS (05-12-08 )

[quote="Momof3monkeys"]

4 times a day? yeah, i don't think that is the answer either! so he is on the same amount as rachel. why wouldn't you want and appointment with a GI doc? there is only so much a PED knows about these kinds of issues. are you afraid that they would go right to surgery?

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Maggie, mom to Rachel (9/19/09), duadenal atresia repair on 10/26/09, VSD closed
www.maggiefluck.blogspot.com

Ya I guess I am afraid that they will go right to surgery..

How much does your little one weigh? Just wondering since she is on the same dose has Nathan..Nathan is 28lbs.

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Lyn - wife of Brian mom of Kris (12-03-97) Mykaela (06-24-99) Nathan DS (05-12-08 )

I seriously think our GI had no idea how long it would take for the bethonchol to work - it's been over three weeks now and we have not noticed a difference - actually things have gotten worse, but I think it is a new formula not the bethanochol doing that.

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Maureen - Mom to Daniel(21), Brandon(19), Jordan(13)PDD, Thomas(11), Carrie(7), Samuel(4) and Mark (almost 2 - ds)
https://www.carepages.com/carepages/MarkEdwardC32708


"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." Mother Teresa

Momof3monkeys wrote:

Ya I guess I am afraid that they will go right to surgery.. How much does your little one weigh? Just wondering since she is on the same dose has Nathan..Nathan is 28lbs.

she is about 12 pounds, 5 ounces....

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Maggie, mom to Rachel (9/19/09), duadenal atresia repair on 10/26/09, VSD closed
www.maggiefluck.blogspot.com

Momtoseven wrote:

I seriously think our GI had no idea how long it would take for the bethonchol to work - it's been over three weeks now and we have not noticed a difference - actually things have gotten worse, but I think it is a new formula not the bethanochol doing that.

what formula is he on?

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Maggie, mom to Rachel (9/19/09), duadenal atresia repair on 10/26/09, VSD closed
www.maggiefluck.blogspot.com

It's called peptamen jr - a pre-digested formula, but I think we are going back to Nutren jr. I think both of these formulas are for older children - Mark was fed breastmilk that I pumped for about 6 months then went to similac for about a year - he wasn't gaining weight too well so that's when we switched to the Nutren jr. He was vomiting while taking all this even the breastmilk, but when he started the peptamen jr it seemed to get much worse.

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Maureen - Mom to Daniel(21), Brandon(19), Jordan(13)PDD, Thomas(11), Carrie(7), Samuel(4) and Mark (almost 2 - ds)
https://www.carepages.com/carepages/MarkEdwardC32708


"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." Mother Teresa

Momtoseven wrote:

I seriously think our GI had no idea how long it would take for the bethonchol to work - it's been over three weeks now and we have not noticed a difference - actually things have gotten worse, but I think it is a new formula not the bethanchol doing that.

we took rachel off the bethanechol on sunday. she got even more cranky if you can believe that! i think it upset her stomach. next GI appointment is the 7th...we'll see what he says.

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Maggie, mom to Rachel (9/19/09), duadenal atresia repair on 10/26/09, VSD closed
www.maggiefluck.blogspot.com

maggiebeth25 wrote:

we took rachel off the bethanechol on sunday. she got even more cranky if you can believe that! i think it upset her stomach. next GI appointment is the 7th...we'll see what he says.

How is she doing now that she is off the bethanechol?

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Maureen - Mom to Daniel(21), Brandon(19), Jordan(13)PDD, Thomas(11), Carrie(7), Samuel(4) and Mark (almost 2 - ds)
https://www.carepages.com/carepages/MarkEdwardC32708


"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." Mother Teresa

Momtoseven wrote:

How is she doing now that she is off the bethanechol?

she is pretty much her normal self attitude wise but you can tell the reflux is back to what it was...hiccups, arching. she gets cranky around 3pm everyday and im not sure if it's because we go for walks in the afternoon or if that is just her cranky period.

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Maggie, mom to Rachel (9/19/09), duadenal atresia repair on 10/26/09, VSD closed
www.maggiefluck.blogspot.com

Just wanted to say I love her new picture - she is so pretty!!

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Maureen - Mom to Daniel(21), Brandon(19), Jordan(13)PDD, Thomas(11), Carrie(7), Samuel(4) and Mark (almost 2 - ds)
https://www.carepages.com/carepages/MarkEdwardC32708


"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." Mother Teresa