Hi! It's been a long time since I posted on these forums. My dd was diagnosed with GERD and oesophagitis 2 years ago, she still has it :sad5:. Up until now it's been fairly well controlled with PPI (omeprazole) though, although she's always needed the highest dose in her weight range, and tends to immediately get the oesophagitis (with bleeding, return of bad vomitting etc.) as soon as she outgrows her doseage. She also has very bad oral aversions - gets all her calories via oral syringe feeds and still can't eat solids or purees of any kind, (but loves to taste foods so her long-term prognosis is actually quite good).
Recently her tonsils have been causing her to have obstructive apnea, and she is scheduled to have them and her adenoids removed in 2 weeks time. The past couple of days her reflux has got much worse all of a sudden - last week she was nearly symptom-free! I am dreading that she might be needing a higher dose already, she's already on 25 mg (we upped it to 25 mg from 20 mg just 1.5 months ago) and she weighs 15.5 kg, it'd be a bit early to raise the dose again and I am sure her doctor would be not be happy doing that. So I was wondering, could the sudden worsening of the reflux be due to her obstructive apnea and snoring? Last night she was snoring particularly badly, and she looks very tired today, I've been giving her lots of Maalox today as well as her usual 25 mg and hope it will help, I might also mix up her food with a little less calories to give her stomach a break to see if it helps.. I really hope I won't have to raise her up to 30 mg or something.. especially as omeprazole is a prescription-only medication here (Ireland).
Erg.. I so, so wish the darn GERD would magically go away.. of all the issues Niamh has had (all of which resolved except the GERD and the oral aversion), the reflux scares me most by far.
:-(
I'm new back on the boards so anyone who has a 3.5 year old or older with similar issues I'd be very keen to chat!
love, Siobhan

Yes, the apnea can make the reflux worse, and visa versa.
I noticed HUGE improvements with Eric after his T and A. HUGE!!!
His reflux became more effortless, and he spat up more and it came out his nose quite often, but with a little time he learned to control it again. (he's a silent refluxer)
But with the more effortless reflux, came some relief if that makes sense at all. No more choking, gaging and struggling with it. The more he struggled the more he refluxed KWIM?
He was always tired, not "Oh I'm gonna fall asleep now" tired hyper active tired. He was always winded, and didn't have much energy to run and play like he should. He would wake up tired.

His eating was nothing short of a miracle afterward. The kid who once struggled to eat even purees (at age 2), and had pain and difficulty with every bite and swallow, could now eat peanut butter sandwiches and even chips. I never thought I'd see the day. His drinking was/is effortless. It was so weird to see him drink normally.

There's even more, but I don't want to bore you ;) most of it isn't reflux related.

What I noticed with Eric (after surgery. hind sight is always 20/20) there was a pattern.
No eating and drinking, feeling better reflux wise, but losing weight and very tired. Then he'd start to eat and his reflux would get crazy again, then his tissues would swell and the choking and struggling would come, then here comes fear of food/drink, and he would stop eating/drinking to make himself well again and the cycle would repeat over and over

Getting his T and A stopped the choking and struggling to eat (and with reflux too), and took the fear of eating and drinking away, but he still cycles a bit. Eating drinking fine, then reflux goes nuts and he doesn't eat well to make himself feel better again. The bad non eating spells aren't as severe or scary anymore and they don't last as long either. Life is much more normal and comparable to a well child now.

Now with all that being said. I think I'm the ONLY one here whos child benefited this much from having a T and A. (PLEASE correct me if I'm wrong girls!)

Yes Eric still has GERD (there was a time when I thought the surgery cured it, it got so good) but it's closer to the GER side of things now, and it's less scary, unhealthy and dangerous now, and I KNOW it's because of the T and A.

Here's a link that talks about the effects of reflux on ENT and touches on the reflux/adenoid/tonsil connection
http://marci-kids.com/eerpharynx.html

Hi wow thanks for the great reply - it'd be great if having the tonsils removed had that great an effect for us! I'll not be holding my breath, but it'd be totally awesome..hehe..
Niamh (my dd) is having the T and A removed because of sleep apnea primarily, she snores like a 70 year old drunk it's terrible! Last night my DH and I woke up around 3 am because my daughter's snoring and breathing in the next room was so loud.. crazy. I also think the tonsils are really not helping my daughter's oral aversion either - weird thing is, Niamh is fine with biting foods, licking, tasting, even swallowing foods that melt (chocolate, ice-cream, jelly etc.), but can't swallow any crumbs, purees - as soon as they get to the back of her throat (where the tonsils are) she gags like crazy. It does get worse when her reflux plays up, but even when the reflux is under control she's a gag-monster. It's mostly psychological I am sure, but those big floppy tonsils sure aren't helping. Needless to say I can't wait for them to come out, though I am really not looking forward to the healing phase afterwards.. eek! Most of all I'm quite worried about how I'll get her to swallow her meds when her throat is sore, she still gags on the dissolved omeprazole tablets even now (you know, with the tiny pellets). Anyway, she went to bed without puking today (...yet.. she might wake up and puke later if the reflux is really bad) but with lots of other symptoms of reflux - I think the Maalox helped a little but I think I'll give her a couple of days of 30 mg and then try to wean her back down to 25 mg afterwards.. erg. As long as she doesn't start bleeding again!
I need a t-shirt with "I hate GERD" on it I think. lol! Niamh is such a delightful little girl otherwise, it just makes me sick to think that she might have this problem for the rest of her life :( I really hope that it'll at least improve! Well, I'll re-evaluate after the tonsilectomy.. I'll be praying that things turn out as well for us as it did for Eric! (by the way, my husband's name is Erik..hehe.. funny!).

I don't have much to offer about the tonsil issue but wanted to throw in that PPI's are not weight sensitive.

Eric was a snorer too. always has been even while awake at times.
But our main reason for seeing the ENT was for his swallow and problems with eating. My jaw just about dropped when the ENT said that this is what Eric's problems were. We were always told GERD, possible stricture, esophagitis, etc
I honestly thought the man was nutso and dumber than a box of rocks until I really thought about it. I mean sure I've heard of tonsils chronically being infected, and they needing to come out, but causing eating and breathing problems just from being too big? I had no idea.

All I know is it for sure will improve something in her life, even if it's just her breathing while she sleeps, that's a biggy! Being over tired can make reflux worse. Maybe she'll at the very least get some relief from that symptom.
Good luck with all of it!
and keep me posted.
I keep waiting for someone to join my I LOVE Tonsillectomies club!!!
Maybe you'll be my first member LOL
I just can't be the only Mom who's child's dysphagia was cured

Welcome back! I am sorry that you have to come back though. I hope the surgery will help Niamh start to feel better.

There are many kids here much younger then her on 30 mg, so it may not be too bad for her to go up if she really needs it.

My daughter is 3 1/2 and will be having her tonsils out in a few weeks. She had her adenoids removed and sinuses flushed at 23mo. She had chronic -- and I mean continuous! -- antibiotic-resistant sinus infections because she refluxed up into her nose. In a healthy person, the adenoids (and tonsils) function as filters for germs. In a chronically ill child, they act as sponges to harbor bacteria. Catherine has been much, much healthier in the last year and a half.

We're back at the ENT for tonsil removal because they've gotten so enlarged (not infected, just gigantic) that food and liquids are getting caught on them and causing her to choke. She's already texture-averted, quits eating at the first cough or choke and drinks half her daily calories so we can't afford for the enlarged tonsils (they touch at the back of her throat) to make a bad situation worse. Her adenoids have also grown back somewhat so they'll be removed again.

Hi everyone! Sorry it took me so incredibly long to update this post - we moved house literally 1 week after Niamh had the adenotonsillectomy (which was fun, as you can imagine :banghead:), and have been up to the eyeballs in renovation work since then.
But anyway, I really owe you all an update on what happened after she had the OP:
1. The apnea has gone :smt041
2. She was in hospital for 1 night, and was a good girl and drank her fluids etc despite the very, very sore throat. Her oral aversion (liquids only up until then) did of course get worse for the weeks immediately after the operation, but she did not lose too much weight.
3. Her reflux hasn't improved, but it hasn't got worse either - she's since had a growth spurt and is still on 25 mg a day, though I can see her maybe needing to go up to 30 mg a day within the next few months.
4. This is the biggie.. NIAMH IS EATING!!! OMG.. after waiting for nearly 4 whole freakin' years! It took her a couple of months to recover from the operation, and then all of a sudden she discovered that she could swallow without as much difficulty as before. First she started eating soft-boiled egg yolks in the morning, then I started giving her stage 1 fruit puree (she was so, so scared, and so brave..I was incredibly proud of her), and then all of a sudden she has just taken off - 2 weeks ago, she suddenly ate a COOKIE.. with biting, chewing swallowing.. all by herself - she needed about 45 minutes for half a cookie, she's since started eating porridge, with bits in! Very small chicken pieces, a gummi bear today for the first time.. she isn't in speech/oral therapy at all, I am just doing it all with her at home - Niamh has just decided it is "time" to wean properly and get over her texture aversions, and she blows me away every single day :smt041
It is just incredible.. the patience with her really paid off! I can see her being able to eat more or less normally within about a year's time now - after being on just fluids/milk for the past 3.5 years. THANK YOU TONSILLECTOMY!
So yeah Minnie I am definately joining your group :lol:
I am so, so glad I didn't let ourselves get bullied into forcing her to eat when she wasn't ready. She obviously had a problem with her tonsils which was aggravating the oral aversion, and by giving her time she still has a very good relationship to food, she has always loved to taste food even if she couldn't chew or swallow it - we sit down together for dinner every evening - I give her a puree made of whatever we're eating, mixed up in a Vitamix mixer (which purees even meat and steak down to a perfectly smooth texture), so she is even eating "real food" now, in the afternoon we have "texture practise", where I give her porridge or something else textured, and she gets cookies, fruit etc to practise chewing on during the day whenever she wants. She still has two calorie-milkshake feeds a day, but I can see these being left off the menu within the next 6 months or so.
Her speech (it was very delayed.. partly due to being bilingual (German/English) but also due to low oral motor skill) has also started to greatly improve recently.
Anyway, it is very, very exciting. Don't give up hope!
Thanks again so, so much everyone.. I never posted much here (it was too hard to talk about it sometimes :( ) but reading this forum has kept me sane over the past few years.
I hope her reflux will lessen as she gets older, we'll see - she copes very well with the prilosec though so at least we have that tool available to us incase it doesn't.
Thanks again :)

:yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo: :yahoo:

That's amazing! WOOT WOOO!!!!
I'm so happy for you both. I'll never forget how awesome it was to see him start to eat, and I still sit and just smile form ear to ear watching him sometimes.
and his speech WOW! What a difference it made.

SO our club is 2 members strong, we need more!!

Thanks so much for updating :hug: I LOVE this wonderful news

I am so glad that you had such a positive experience with the T&A!!! Ethan has his surgery scheduled for October 29th. I am both excited and aprehensive at the same time. My son has problems with apnea as well as GERD and asthma. He is recovering from dysphagia and has recently outgrown Central Sleep Apnea!

Again, congratulations!

how did Ethan's T&A go?
Niamh has done amazingly well since her tonsils came out - she was sick non-stop throughout the winter (first real winter in daycare), and obviously made no progress with her eating then, but with the beginning of spring she's been taking HUGE steps forwards, she's now able to bite, chew and swallow nearly anything (WOOOHOOO!!! This is a kid that was on liquid oral syringe foods only less than 6 months ago!).. only in very small amounts so far and she's getting her calories via Vitamix-pureed "soups" (basically whatever we're eating, thrown in the Vitamix mixer with some milk to thin it down a bit). I think now it's just a matter of practise, and I think she'll gradually start taking over the whole eating thing by herself as she gets used to it. I am so, so glad we chose this route to handle her oral problems though, basically very hands off, encouraging her without stressing her out, and keeping food enjoyable and fun. She really enjoys her food now! She was eating cooked rice today.. I never thought I'd see the day :lol: