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Old 12-11-2011, 11:48 AM   #1
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Severe Reflux

Dunno if this is the right place... But i dont know what else to do and i need some advice.



i just dont know what to do anymore. Shes on meds 2xs her day and still cries ALL DAY LONG. I am going crazy! Shes 13 months old and barely eats anything. She still nurses all the time. (I dont wanna cut her off, but i would like it to slow down a little bit) she wakes at all hours during the night SCREAMING BLOODY MURDER. she has no allergies or intolerances (tested for them) But can not handle dairy. (i dont get this one..) Which comes to my first question... Is it typical for reflux babies to have issues with dairy?

our insurance changed so now i am not able to see the GI that we were seeing. (the PCP is trying to find one that will take our ins.) My DD needs her meds changed again. I am just so lost and confused. My DD screams in pain all the time and there is nothing i can do! She is not a failure to thrive since she is a healthy 22 lbs and almost 30 inches, But i loose it thinking she has only known pain and it doesnt seem to be getting better at all.

anyone been there? I think i just need hugs and to know she will eventually be better. I am just so frustrated.. Looking for answers and not getting them.

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Old 12-11-2011, 12:23 PM   #2
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Re: Severe Reflux

My son is two and we got him off the medication at 11 months but had to do some as needed. Dairy is absolutely a trigger. We ended up with Walmart Toddler formula and Gerber Sips as whole milk and 2% are triggers (diary in stuff is fine). Also, tomato's are a trigger for us too. Diet can be a big part of it when they hit toddler and I'd do an elimination diet for a while. If you google toddler reflux diet, milk is a huge trigger. I had found a good list but can't seem to find it now. I used it and watched for the screaming. Also, use mylicon for the gas. We use it still, especially at night.

I'd go back to the ped. until you can get into the GI (or can you private pay for one visit or go off-network) for a medication update/change.

A lot of kids outgrow it. Mine didn't but I know its genetic and the older he got (more toward the 2's) the better (he's now a little over two). Its hard when they have the screaming fits (especially when they wake up at night) but hang in there. No one really believed us till they saw them and it was clear he wasn't a tantrum or being difficult. It broke my heart to have him in that much pain (usually we'd do mylicon, pat the back and if he'd let us the bike legs but usually he was screaming and thrashing).
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Old 12-11-2011, 12:30 PM   #3
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Re: Severe Reflux

OMGosh! Thank you for replying! Seriously i have tears because i know someone else has been there! I def dont give her dairy. Ill have to remove tomatoes also. Ill go google for that list! Thank you so much!
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Old 12-11-2011, 12:36 PM   #4
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Re: Severe Reflux

My son is now 6, but he suffered from severe reflux up until a year and a half ago when he had a Nissen Fundiplication surgery that finally resolved it for him. I hope you can find a new pediatric GI as soon as possible so you can get back to finding a resolution for this. If you have specific questions about anything, please feel free to PM me. DS was on several medications and a GERD diet (no tomato, citrus, chocolate, or mint and nothing fried) and did a pH level test and a couple of endoscopies before we ended up with the surgery.
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Old 12-11-2011, 12:41 PM   #5
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Re: Severe Reflux

No, we are still going through it. It sucks and sometimes all you can do is cry with them.

Do check on the reflux diet and look at a bunch of sites. I'll see if I can find the one I used as it had a nice chart. But, at this point, keep track of the food and see what sets her off. And, try some mylicon too if you don't, especially before bed (either in a sippy or straight). Laying down makes the gas worse so it helps to try to get it all out before naps/bed. (I prefer the dye-free kind but its $$$).

Also, if you use something like a toddler formula or anything that has to be mixed, let it sit a while or watch how you mix it before giving it as it lets lots of air/gas bubbles in.
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Old 12-11-2011, 01:36 PM   #6
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I have some ideas but can't type them all put on my phone. I'll try to remember to come back here, but if I don't, please pm me.
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Old 12-11-2011, 06:31 PM   #7
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I'm sorry you are going through this You probably already have all of this information but just incase there is something new/different I thought I'd share it with you:

http://giforkids.com/?a=Diseases&b=G...isease%20(GERD)

http://giforkids.com/?a=Nutrition&b=...isease%20(GERD)

My biggest suggestion is to find a pediatric GI as soon as you can. You can call your insurance company directly and see who is in your network.

Good luck!
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Old 12-11-2011, 07:46 PM   #8
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Re: Severe Reflux

Im sorry for your LO

We are going through this now, and I feel your pain. I certainly don't have all the answers but I can share some of our experience since I know sometimes it helps to know your not the only one who's child is going through this.

Our dd cried ALL THE TIME. I was loosing my mind, truly. It was so hard. She is now on a cocktail that takes the edge off a bit, but she is still extremely irritable and 'on the edge' of total meltdown most of the time. She can't do dairy or soy, the 'crazies' come back. She takes 7.5 mg of prevacid twice a day and drinks neocate formula (which is costing me about $400 PER MONTH). We tried to take her off the prevacid at night and she just cried non stop for about a week, and when I put her down she would crawl around the house following me, screaming and crying She is 10 months old. I have no idea what I am going to do when she turns 1, because clearly she can't tolerate milk and I can't keep spending this money on her formula.

I have had pretty negative experiences with drs, both GI and peds. They just don't take us seriously but they are not living with her and seeing how miserable she can get.

I have found smaller and more frequent feedings seems to help. If your dd takes a sippy or bottle, one of the GI's told me 1 teaspoon of rice or oatmeal baby cereal to thicken milk/formula helps keep it down (our dd is also a barfer). This is especially helpful at night. I also stay away from anything acidic. I have actually elevated the bed for dd slightly by putting a pillow under her crib sheet (under the mattress protector and sheet to make sure she cant get tangled up in it or under it at night) and it acts like a wedge. I tried elevating the bed and all that happened was dd would roll to the bottom and sleep smooshed against the end of the crib.
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Old 12-11-2011, 08:47 PM   #9
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Re: Severe Reflux

Quote:
Originally Posted by sesa70 View Post
Im sorry for your LO

We are going through this now, and I feel your pain. I certainly don't have all the answers but I can share some of our experience since I know sometimes it helps to know your not the only one who's child is going through this.

Our dd cried ALL THE TIME. I was loosing my mind, truly. It was so hard. She is now on a cocktail that takes the edge off a bit, but she is still extremely irritable and 'on the edge' of total meltdown most of the time. She can't do dairy or soy, the 'crazies' come back. She takes 7.5 mg of prevacid twice a day and drinks neocate formula (which is costing me about $400 PER MONTH). We tried to take her off the prevacid at night and she just cried non stop for about a week, and when I put her down she would crawl around the house following me, screaming and crying She is 10 months old. I have no idea what I am going to do when she turns 1, because clearly she can't tolerate milk and I can't keep spending this money on her formula.

I have had pretty negative experiences with drs, both GI and peds. They just don't take us seriously but they are not living with her and seeing how miserable she can get.

I have found smaller and more frequent feedings seems to help. If your dd takes a sippy or bottle, one of the GI's told me 1 teaspoon of rice or oatmeal baby cereal to thicken milk/formula helps keep it down (our dd is also a barfer). This is especially helpful at night. I also stay away from anything acidic. I have actually elevated the bed for dd slightly by putting a pillow under her crib sheet (under the mattress protector and sheet to make sure she cant get tangled up in it or under it at night) and it acts like a wedge. I tried elevating the bed and all that happened was dd would roll to the bottom and sleep smooshed against the end of the crib.
Just stay on the medication for another month or two and then try to pull off again. We got off the meds at 11 months or so (but then used Zantac for a while as needed). We found once our son got teeth and started eating more solid food (he could not gum) that helped. We started with cereals at 4 months and the cereals helped too.

We spent that much on the Similac RFT and it was tuff but we just had to do it. About 15 months, we could switch to a toddler powder. Now its about a can a week at I forget, maybe $13. (huge difference)

At 10 months, I thought there was no end in sight too and we had tried like you to stop the medication unsuccessfully. Just give it a bit more time.
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Old 12-11-2011, 09:00 PM   #10
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Re: Severe Reflux

I wrote a ton and now 2 times it was deleted.. I will have to write later
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