LPR/ what is going on?

[Anonymous]

Ok, everyone I am really close to the edge. My son is still suffering from reflux. He is 18 months old. He takes 15 mg prevacid and has since 10 months with little improvement to his sleeping. I know this is not a bog dose, but the doctors have refused to up his dosage any higher. He had an endoscopy done at 9 months which showed no damage to his exophagus (he was only on zantac then). So the drs said he doesnt have reflux because there is no damage. I knew all along that he has silent reflux. By the way I had a “surprise”” pregnancy and now have a 3 1/2 month old daughter who is suffering terribly from silent reflux. She is on neocate and prevacid. Ugghh no sleep for me EVER!! You know what? I don’t care about the sleep. If I could see my children sleep comfortable I would give up sleep. If it was a behavior thing and my son was waking just to have me close I could accept that, but I can’t accept him waking in pain and tossing and turning constantly. Ok so here is the purpose of this post (sorry I needed to vent)

He is at 18 months still a horrific sleeper. Wakes many many times a night and when he is sleeping he is not resting. He is constantly tossing and turning. I brought him to an ENT because he mouth breathes. Anyway, they did a scope and found irritated vocal cords, huge adenoids, and huge tonsils (3+) I told the ENT I think this all stems from reflux that is not well controlled, but he says he doesn’t think its reflux and that reflux doesn’t cause large adenoids, tonsils. Ok, now for my questions:

1. CAn enlarged adenoids cause constant tossing and turning and I do mean constant?

2. Can enlarged adenoids/tonsils cause crying out? He cries out many times at night. HIs worst time is from 4 to 630. and he usually wants to drink his sippy (ENT says the mouthbreathing causes dry mouth which explains the drinking at night)

3. Can irritated vocal cords result from post nasal drip from infected/enlarged adenoids?

4. Did he outgrow the reflux and now these are just secondary issues that need to be dealt with?

5. If it is LPR, WILL HE EVER OUTGROW THIS? I’m sorry I HATE REFLUX!! IT has robbed my babies of their infanthood. IT has ruined my marriage. It has consumed me, and I was just waiting and waiting to see my son outgrow this terrible digestive disease and NOTHING!! I don’t want him on a PPI forever, but something tells me he still has reflux.

6. He hiccups every so often, usually at least once a day/every other day. I don’t hear gulping anymore, but he swallows repeatedly when he sleeps. However, drs. say he could be swallowing all the drool since he is a mouthbreather or maybe it is drainage from the adenoids. I don’t freakin know. But it’s not an audible gulp like when he’s a baby. It just seems like repeated swallowing of saliva.

ANY HELP?

Jenn

[Anonymous]

By the way, you would never know I’m an educated woman. lol I haven’t slept in 18 months, and the sleep deprivation has had a terrible impact on me. So, please excuse my grammar/spelling errors!

[Anonymous]

a few more questions! SORRY!!!!

Do you think if it’s reflux related, once treated appropriately the adenoids/tonsils will shrink? or do they need to come out anyway? Do you think removal will improve his sleep regardless of whether or not the reflux is still active?

Yesterday, we went for sleep study, but it was an absolute disaster. He was pulling the wires off, refused to wear the nasal tube, and the techs said he had to sleep on his back! He has slept on his tummy since he was 2 months old. Interestingly enough, I always thought he slept legs tucked under with butt in air because of his stomach issues, but the tech said a lot of babies with apnea sleep that way. He doesn’t snore though, so I’m not sure about the apnea. Maybe, the adenoids just make it difficult for him to breathe without causing significant apneic episodes. Anyway, only 1 in !0 kids his age actually are able to do the study according to them. The majority of those are girls, go figure. lol

Ok, last: I need success stories. I need hope! ANyone with a toddler his age with LPR/silent reflux outgrow it by 2? ANYONE?

[Anonymous]

Reflux can do terrible things to the adenoids, tonsils, voice box and ears. My son got recurrent ear infections. When they finally put the tubes in they had to suction the acid out of his ears. He would also loose his voice constantly and would get huge canker sores on this tonsils until I got the silent reflux under control . Damaged and enlarged adenoids don’t typically go back to normal size. Personally I would have them removed and tubes in if you haven’t already. Minimal pain with either of those. The tonsils would be the harder one to swallow. Follow your gut on that one. I would also ask your doc to just humor you and write you a script for Zegerid. Let them “prove you wrong”. If its not reflux the Zegerid wont make a difference. If it is then problem solved.

[Anonymous]

How old is your son? Did he outgrow his reflux or is he still medicated? He is on 15 mg prevacid. Should I ask for zegerid at an equivalent dose or higher? I wish I could get him off PPI’s altogether. He just doesn’t seem to be outgrowing this. OF course, I’m part of the 2% whose child doesn’t outgrow it. Of course. I’ve been looking forward to each milestone and when 18 months came, I felt like a hit a brick wall. No hope for improvement I guess.

[Anonymous]

Ryan was 3 before I took him off the PPIs. That is really not that uncommon. I know what you mean by looking forward to the milestones hoping that it ends.. you end up feeling like you are wishing away their baby months. Sad. I will tell you that Ryan was at the height of his reflux at 14 months. It was ugly. He was on 30mg of Prevacid and it was doing nothing. We were in and out of doctors, the ER, specialist etc. He went from the 97th percentile in weight to 2nd percentile. A feeding tube was about all we had left. I too had hit a brick wall. I finally landed with the right people and got started adding caracream (sodium bicarbonate) to the prevacid and 10 days later I had a completely different child on my hands. It was stunning.. The docs were stunned too. The ER visits, specialists and never ending doctor appts ended immediately. His reflux was FINALLY under control. In addition I was able to drop his dosage down from 30mg to 15 mg immediately. It was that much more effective for him. Zegerid is Prilosec plus Sodioum Bicarbonate. I am not saying this will be the magic potion for you son as it was for mine, but at this point it certainly can not hurt to try. I would demand a change in his script and trial it for 2 weeks. It should be very obvious if it is working or not. You will still need to address his tonsils and adenoids though. He has a chance to grow into his tonsils (my son did) but the adenoids are probably a lost cause. Just my opinion though. I have a friend that just recently was dealing with all this too. She finally convinced the docs to put tubes in her daughters ears. I had her insist they look at her adenoids while they were in there. Sure enough they were huge and had acid pits in them. They took them out right way, changer her PPI and she has been a new kid since. Push mamma push… Do not give up.

[Anonymous]

I’m fortunate in that my son eats, but he wants to eat every second of the day. Screaming at me for food when i know he is so full. He has always been a comfort eater. It’s his sleep that is horrific. As far as the caracream did your dr. recommend it/ know about it. I know about marci kids so i know its often recommended but i’m nervous to start it. My daughter did terrible on compounded prevacid from day 1 and i think it’s because of the sodium bicarbonate so i’m scared to try. Maybe i should try caracream with her. It’s so comforting to know he finally did outgrow it, but 3 is so long away for me. I’m hoping my 4 month old comes out of this sooner. My son has suffered far too long, it would be nice if my daughter overcame it much sooner. THanks for your response. I’ll look into caracream for both of them. SHe is 4 months and has been bumped to 22.5. She did really well on 15 but after 3 weeks, it went downhill again. It kills me to give her this much medicine. At 4 months/ 13 pounds isn’t 22.5 just way too much? as far as my son, im going to another ENT for another opinion. If he sees his vocal cords inflamed again, I’m gonna ask for another prescription. My ped was telling me his cords could be inflamed as a result of anything (crying, talking a lot, screaming) ughh why don’t people get it? i know he doesn’t vomit, but he STILL HAS REFLUX!! he can’t make it past 45 minutes ever. I can set a watch to it. He doesn’t gulp though, it just look like he is swallowing saliva. When he was little i’d here the gulp. I don’t hear it that much really. Can it still be reflux? it looks like he just had a mouthful of drool and is just swallowing it (he is a mouth breather). IT’s all so confusing.

[Anonymous]

I don’t think caracream is around anymore. Is it? I’m scared to ask for zegerid because of the sodium bicarbonate. CAuses a lot of gas. I heard of caracream max. Is that still available. I suspect there are motility issues involved so maybe that’s why prevacid solutabs haven’t done much for us. Probably have caused some added problems, but I’m afraid to stop it and it’s so easy to give. When my daughter starts solids at 6 months I’m going to switch to prevacid capsules with pureed pear because I don’t like the aspartame/lactose in solutabs. I think it’s causing a lot of gas. As for my son, I will probably try the OTC prevacid as well. Although, I may end up having to use a buffer because of slow motility (which I suspect) Sorry I’m rambling it’s just been such a long road, with no light at the end of the tunnel. I hope for the day when I can post under “success stories”

[Anonymous]

Right now you can not get caracream or caracream max. The one thing I would say is that every child is different and responds to different meds differently.. even siblings. It sounds like you have tried everything else with your son, seems like Zegerid is the last thing you havent tried. You have to follow your gut though. A really good PPI that is working really well for your child will cause excess gas for about 10 days. Why? Because it is actually working and shutting down the acid production. Hence the body has to learn how to break down the food without it if that makes sense. I am a huge believe that you try one thing at a time and you give that one thing 2 full weeks to work or not work before you chance course.

My old ped use to tell me that Ryan was hoarse and no virus due to virus and screaming. Didnt believe the reflux could get that high. The ENT proved that theory wrong when he had so suction the reflux out of his ears. I guess what I am saying is that you are a smart educated woman and more importantly a Mom. Try to look at this very pragmatically. Lay out the problems, the possible causes, devise a plan, execute upon the plan, stay consistent for 2 weeks, reassess if the plan is working, modify the plan where necessary and document, document document. Do no rely on your memory or emotions. What foods, what time, what meds, what time, sleep pattern, ect. I promise you, a pattern will arise. Stay open minded to all the possible solutions and causes. Try not to zero in on reflux alone.

[hellbennt]

I agree with everything vigilantmom has said!

give everything a good two weeks!

PUSH. TELL drs what your baby needs.

[Anonymous]

i really need to talk to you—but i’m in th middle of my own mini crisis and can’t be on here for long. my daughter had a fundo at almost 10 months old. she was faillure to thrive, refluxing almost 25% of the time and her esophagus was getting ulcerated. she continued to be failure to thrive until she was 2. shortly after she was a year old she developed obstructive sleep apnea. she had very large tonsils. this did not appear to have anything to do with her reflux since she did not develope it until after her reflux was taken care of. it didn’t have anything to do with sore throats, either, it just seemed to run in all of my girls—and myself. i have 6 daughters and all but one of them has had their tonsils out.

we took my baby to a pediatric ENT. sylvia had her tonsils and adenoids removed just after she turned two—made all the difference in the world. they will sleep very restlessly with it. vocal chords can be irritated by yelling or excessive throat clearing or by reflux—probably by drainage, too.

kids who sleep on their tummy usually sleep with their legs tucked under and their bums in the air—my first 5 kids were born before the ” back to sleep” campaign. we used to be told it was safer to sleep them on their tummies in case they spit up—–i have never heard anything about kids sleeping that way because of sleep apnea—doesn’t mean it isn’t true, but all 5 of my first tummy sleepers slept that way and not a one of them had sleep apnea.

sounds like your little one needs the tonsils and adenoids removed—then see how he does—it really sounds like it could be the cause of his problems.

‘ll try to get back on soon–but we really need to talk! if you want to call me during the day before i get back on the computer my number is 208-878-4167. i think that is the first time i’ve ever suggested anyone call me—but i am having so much trouble with my neck and the computer seems to make it worse–especially when i am as stressed as i am right now. if i talk on the phone i can use a head set and it doesn’t bother my neck.

i hate to hear what you are going through and what the docs are saying—your story sounds really familiar.

[Anonymous]

Thank you so much for your reply. When is a good time to call you??

[Anonymous]

My son even at 18 months wakes 45 min into nap. When I go in to resettle he is crying and sounds very congested. My question is is it the reflux causing this or is congestion from adenoids. What’s confusing is it happens every 45 minutes so the congestion is probably reflux related right. It is just so confusing. Are we still dealing with reflux or are the problems the result of secondary issues (adenoids, tonsils, and I believe he has glue ear bc he constantly rubs his ears) Noone can give me an answer. Not his ped, ENT, or gi which means I have to do a freaking PH probe on him which sucks!!!! Oh how I wish an adenoidectomy would solve all of these problems. As much as I would like to avoid surgery I just want something to help him. Every time he wakes he sounds congested I just don’t know if that’s reflux or adenoids bc it is so predictable. I really hate this

[Anonymous]

the middle of the day is probably a relatively good time to call me–my kids are all in school and i’m usually either resting or doing a little cleaning.

actually, i think doing a PH probe is probably a good idea. sylvia had her PH probe and then her scope done when they removed the probe. i had no idea how bad her reflux actually was until we had those test done. she had one reflux episode that lasted 44 minutes—and she slept right through it–it was in the middle of the night. i could sometimes tell when she was refluxing by th numbers on the little monitor—and she didn’t even flinch—and this was with her esophagus already getting ulcerated. the doc pointed out that it was all she had ever known.

[Anonymous]

What’s with the waking up crying every 40? Usually he rubs his face and scratches ear. I hate this. He just woke crying and when I put him down for nap. He kept sitting up. Is this reflux? Why isn’t it getting better. By the way he is dairy and gluten free. What else could be causing this. And tell me about probe. He is 18 months and has some minor sensory issues. I feel like he will be pulling at it all day. What if they do a scope and just like his 9 month endoscopy they find no inflammation. What if all he has is vocal cord irritation. Would u put them on high dose PPI for that. I just want him comfortable. Im taking him to another ENT tomorrow. But so far all they can tell me so far that’s concrete is that his adenoids and tonsils are enlarged and he hast irritated vocal cords. The ENT said it doesn’t look like reflux to him. I don’t get it. Wouldn’t they be able to tell reflux related issues? He has a ton of experience wouldn’t he knows what’s reflux related and what’s not?

[Author]

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