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[Anonymous]

Hi everyone. I was active her when my dd was about 5-19 months old. The site was a life saver for me. She was taken off meds (prilosec and reglan) at 18 months and is now 31 months (2 1/2). Her reflux has never fully gone away but it didn’t get any worse after going off meds so we elected to stay off assuming she would continue to improve. Well, here I am a year later and not sure what to do.

She has always been mostly a silent refluxer. I can still hear her reflux some during the day. It doesn’t seem to bother her one bit though. She is a very restless sleeper. At the worst of her reflux she woke 8-12 times a night and rarely slept over 1 1/2 at a time. For the past year her sleep has improved (I’m not up w/her much) but she is very, very restless. I’ve been wondering whether she really is sleeping better or she just has learned to deal w/it. The past couple weeks I have been up w/her more and have noticed it seems to be reflux related. Last night I was up w/her 4 times w/what I know was initially reflux. I finially got her to take some Mylanta and it seemed to help. So now I’m wondering what to do. I was really hoping she could tell me about it now but at night she is half asleep and can’t seem to tell me what is going on. She also has a very high tolerance for pain in general not to mention she has lived w/this her whole life so she may just be used to reflux.

I am thinking of trying meds again for a month or so and see if it helps. Although we don’t want her on meds if she doesn’t have to be. Not to mention I just don’t know that I can get her take meds w/out a huge battle.

I am also wondering what role diet my play w/a toddler w/reflux. We haven’t noticed any foods that for sure cause her problems but her diet isn’t the best either. I did just stop nursing her about 2 months ago. She doesn’t drink milk (she refuses it) but does eat some yogart and cheese. She was tested in her first year for milk intolerance and it came back negative. Would I be better off adjusting her diet first?

Is there an overcounter med that would be appropriate for a 2 1/2 year old? She weighs about 32 pounds. I just don’t know what to do at this point. She clearly isn’t miserable but if she is having reflux episodes on a regular basis I want to give her something so she doesn’t have any damage. To complicate things we just moved to a new city and state and have no doctors here yet. I’m just not sure what to do. Any thoughts? Thanks!

Kim and Emma 1/14/04

[Anonymous]

Hi Kim, I have an Emma too!! Also I wanted to add that I live in Richmond, MO which is about 45 minutes from Kansas City and I currently go to Children’s Mercy hospital in downtown Kansas City and Olathe is not far at all from this hospital. They are wonderful and I take Emma to the GI clinic there and I have an awesome nurse practitioner that I can refer you to and I can even talk to her to get you in sooner, since there is about a 2 month waiting list. She let me put Emma on Zegerid (in my opinion, the best med ever) and we see her about once a month. Emma is also having food issues, she still can’t tolerate milk and I am wondering if she has other issues too so we are having an EGD done. I actually got the phone call today to schedule it and I missed the call b/c I was in a meeting at work so hopefully I can get a hold of them today. For the past month or so she has been having a lot of restless nights, tossing and turning in her sleep. Hopefully this will give me some answers. Let me know if I can help in any way, I would be happy too, maybe exchange phone numbers!!!

[Anonymous]

After I posted this I noticed that in your signature it now says Florida instead of KS, so your living in Florida now??

[Anonymous]

Hi Brandy. Yeah, we just moved from Olathe to FL. I changed my profile after my post. We also went to Children’s Mercy. In fact we were regulars there for many reasons including the reflux. I must say I loved them. If we were still there I would call her ped. GI and start there. I too loved the nurse practitioners. They always got right back to me and did a lot over the phone. Zegerid was just coming out when we were last on meds. I’ve heard it’s great. What’s an EGD? Interesting that both of our girls toss and turn at night. It’s so hard to know if it is reflux or just restless sleeping for other reasons. Thanks for offering to exchange #s. Good luck w/your Emma. I really thought I’d be done w/this a long time ago. I’m sure you did too. My mother’s instinct is telling me something still isn’t right.

[Anonymous]

An EGD is the same thing as an endoscopy where they run a scope down to see their esphogus, stomach, the whole GI tract. It might give you a good idea of how much damage she still has. They are also taking biopies that can determine allergies and some intolerances. I think Emma is over her acid problems but the food issues are not diminishing. They don’t seem to bother her but like you said my instints are also telling me something isn’t right but I just don’t know what it is. Emma reminds me of a starving child where her arms and legs are well proportioned but her stomach sticks out pretty far, so she looks bloated 24 hours a day. But yet the more she eats the more she poops so I don’t know why she looks like that. She can poop 2-3 times a day and they look fine. When she has dairy she has dirrhea w/muscous several times.

I hope you get some answers too, what tests have you done? Would you consider doing more. I have never done any tests on Emma, she has gradually done better but now she isn’t getting better so I feel I have to know even if it comes back with nothing.

Emma sleeps with me but she has been pretty restless. I know other moms had some issues and they had breathing issues but Emma breathes fine, she just acts like she can’t get comfortable. But she is teething so that might be all it is, but on the other hand is it related to the foods she is eating. like what you are concerned with. I know food can aggravate relux so maybe you could watch what she eats, keep a journal and see if you notice anything about specific foods, it could be a start.

[Anonymous]

Are you near Miami? I know Laura lives there(aka hellbennt). Just trying to see who lives nearby and can help you find a doc.

[Anonymous]

You can try Tums when she is having a really hard time. The doctor told us as soon as our son could chew a tablet we could give him tums to help with break thru heartburn.

[Anonymous]

Thanks for the responses. We our outside of Orlando so Miami is a good 4 hours from here. I thought about Tums today since she chews her vitamins everyday. The thing is she never complains about it I can just hear it and I know it wakes her some at night. I may just start by giving her tums or mylanta before bed and see if she is less restless. In the meantime I’m trying to get set up w/a pediatrician for her. Then we can go from there if more is needed. I like the diary idea. I should do that.

Ok, I know what an EGD is then. Emma had one along w/the biopsies. She had an upper GI done before the endoscopy. She also had chest x-rays done when we took her to the ER. All were done at Children’s Mercy. The chest x-ray was because she wasn’t breathing one night when I went to check on her. She had asperated on her spit up and choked. The x-ray showed a hiatal hernia but the other tests didn’t. I guess it can come and go. The ped. GI said it really didn’t matter because it is treated the same way as reflux it just could explain her reflux. So I wonder if sometimes she has a hiatal hernia and sometimes she doesn’t. The tests all showed severe reflux and no milk intolerance. Everything else looked fine. I think I would hold off before more tests since she has had them already. She’s been through a lot in hospitals already (she was hospitalized w/a stomach flu that sent us to the ER 2 times w/dehydration, she had an allergic reaction to hay at Halloween last year and had problems breathing, and she cut her head open when she fell, all in addition to the GI tests and ER trip for that) and has bad memories from them all. Unless it’s necessary I don’t want her to do anymore. Like I said we know Children’s Mercy very well!

My Emma has always pooped strange too. I’ve been told she falls w/in the normal aspect of things. She can be really runny and then be constipated all w/in a few days. Her stomach sticks out at times too but we have noticed it is always right before she grows up. She grows out in her belly and then her height catches up w/it.

[Anonymous]

I totally understand about not wanting to put her through more tests. Emma was also hospitalized twice for a total of 5 days when she was 5 months old b/c she had the flu and was severely dehydrated. Something you really don’t need on top of all the other problems they are having. That was another reason I didn’t want to test her, I didn’t want to put her through anything b/c I didn’t think a test would tell me something I didn’t already know. I just need to have piece of mind with this test. I am getting a little aggravated b/c they called me this morning to schedule the EGD and when I try to call them back it goes straight to voice mail!!

I didn’t think the hiatal hernia came and went, I thought once you had it you had it. That is strange. So if you don’t fix it, it will come and go forever, meaning she could possible have acid reflux indefinitely? Poor thing, I am glad she doesn’t act like it hurts, that is the last thing you both need

The tums does sound like a good idea, it might be easier than giving her Mylanta if she doesn’t like taking meds. I hope it works for you. Maybe give it to her right before bed and even if she wakes up at night. I remember when Emma was having acid problems at night I gave her Mylanta and it always seem to soothe her so hopefully tums would do the same thing.

[Anonymous]

Reflux can make the vomiting when they are sick out of control. Whenever my Emma throws up she literally doesn’t stop. She throws up several times an hour for days and can’t keep a thing down. The first trip to the hospital they rehydrated her orally and sent us home. We came back 2 days later and she was so dehydrated and her blood sugar was low we stayed for 3 days. They kept trying the oral rehydration but it just made her reflux fare up. I finally said no to it and they finally listened! She should have gone to the hospital a second time but we tried everything at home first knowing they would do the oral hydrating first. Our Dr. perscribed a supository (she was over a year old then) and said if she throws up one more time to go to the hospital. Well, it worked. Now whenever she throws up she gets a supository. It helps a lot.

Funny you can’t get a hold of anyone. How annoying! I am glad we did the tests the first time around. We didn’t do it right away but after several tries at med. failed. I felt a lot better after it. I was amazed at how quick the endoscopy was. Good luck. It is scary when they put them uner but it was so short. I assume you are having it done at Children’s Mercy?

There is something called a sliding hiatal hernia. I guess it just slides in and out of position. That’s what they said it probably was since it was clearly on the x-rays but not on the upper GI or endoscopy. No one really was worried about. I may ask again about it once we get a new dr. here.

[Anonymous]

We give Kayleigh Smoooth Dissolve Tums less chalky in my opinion. Kayleigh will also toss and turn and sometimes moan and groan while she’s sleeping and sure enough in the morning she will tell me her tummy hurts and it’s yucky in her mouth! So I know she’s still refluxing at night. Good luck in finding a ped who will listen and understand all you’ve gone through!

[hellbennt]

tums are good for toddlers- they’re like candy…

I’d try cutting out all dairy- hidden included- & soy for 2 or 3 weeks and see if her sleeping improves…there was a mom here lovemysophia & she swore this helped her lo with sleep issues…anne also swears by diet w/ her lucas who also has a hiatal hernia- so a food diary would be good- but i’d start w/ milk and soy proteins and the next would be to try no wheat/gluten…hmm…

there’s a link looking for a ped GI- thre used to be a mom her szvella from Orlando- if you don’t find her recommendation, let me know- I have her email address

[Anonymous]

I was just wondering about the suppository you mentioned that your doc gives when Emma vomits. Is it to stop the vomitting, or to prevent dehydration? Hailey also goes bezerk vomitting when she’s not well.

[Anonymous]

Thanks for the suggestions Laura. I remember lovemysophia. She and I both had babies that were up all the time! I’ll search the posts for szvilla’s recommendation. You are amazing at what you remember!

The suppository is to stop the vomitting. Her doctor said w/her it is best to go ahead and give her one the first time she vomits. Once she starts she doesn’t stop. It usually takes 2 suppositories (1 every 6 hours) to kick in and she is vomiting for the first few hours but after the 2nd suppositories she stops. It is trimethobenzamide. It is an anti-nausea medication. So it stops the vomiting which keeps her from getting dehydrated.

I gave Emma a tums last night before bed. She loved it. She was still up 4 times last night tossing and turning and moaning. I must confess we had pizza last night. It’s hard to break a familyy tradition of Friday night pizza. Although this morning she has a stuffy, bloody, crusty nose that she says hurts her. Maybe she’s getting a slight cold. We’ll see. Thanks for all the suggestions.

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