advice about operation

[Anonymous]

hi there everyone. long time no talk.

just wondering if any of you parents out there have had the operation on your wee people? Noah is due to have his done in the next few months and i have been tossing up about it getting done. when he is on the correct meds and doesnt get sick from anything else the only problems we have is his food aversion and sleep problems. when his reflux is not controlled then all we get is vommiting and a very sick boy.

he turns 2 next month and it has been so hard with him. he has just had an ear operartion cos he had severely impacted wax and countless ear infections we did not know about due to no doctor seeing inside his ears since birth…(dont get me started as he now has delayed speech and possible hearing damage cos they sat on their asses!)

His ped thinks that the operation could help him but because he has such relaxed joints in his body thinks that these kids do not benefit greatly from the op and have to stay on meds for life. oh brillent! his eating is shocking as he has had so many bad experiences and his gag reflex is strong so can only eat pureed food or food that disolves `in his mouth. his sleeping is terrible as he only goes to sleep on the boob! and if i leave him to cry gets his acid up and vomits. then really sick 4 days! i have just had enough with it! it just doesnt get better and i dont know if the op will help. they have done all the tests and biopsys but dont get any real results as he has to stay on his omeprosal (50mg a day) or his breathing gets chesty and he starts power chucking and choking and very sick so they dont know how bad he is!

any help at all would be appriciated

[Anonymous]

Hi Rachael.

I’m so sorry to hear that Noah is still having problems with reflux and I can understand your fears and frustrations as we are in the same boat.

Hailey also is up all night, and we have had the same sleep training issues due to the vomitting. We also have feeding aversions and other feeding problems as a result. We have found the same thing regarding the meds- when she is well controlled we only have the feeding issues and the sleep issues. When she is not well controlled, we also have the vomitting, arching, screaming, irritability etc.

We have not yet considered a fundo. Our ped GI follows the approach that unless there are severe complications like respiratory issues, damage that can’t be prevented from meds then he prefers not to do them. He just told us last week that Hailey would not be considered a candidate for those reasons, and I’m fine with that. I think the fundo has to be considered on a case by case situation- some kids do well with it and some don’t. If your doc thinks that he might not benefit from it because loose ligaments, then I would be sure to ask a lot of questions before deciding.

There aren’t many people on this site who have kids with fundos- I believe only 2- Christine (kevieb), and another baby Amanda. I will pm you with other places where you can ask your questions that you can hopefully get more responses.

As for the feeding, I’m not sure if Noah has started feeding therapy, but the symptoms and problems you describe were very similar to Hailey before starting her therapy. We still have serious feeding issues, but the gagging has stopped for the most part. If you haven’t done this already, I would consider looking into feeding therapy available in your area. You might even want to look into EI and see if he qualifies that way. It sounds like you may be dealing with some speech issues and perhaps sensory so you might be able to get multiple therapies.

We had Hailey go through our version of EI in Canada, and she received multiple therapies at home. It was very convenient.

Also, we just had the same hearing issues with Hailey. I’ve always suspected problems with her ears because she would pull at them and scratch them until they would bleed. Our ped told me each time that they were clear. She did have 6 ear infections since May, but still I was told that after the meds, she was fine. When her speech was delayed at her 16 month appointment we finally got an appointment for a hearing test, and they found that she had a hearing loss and completely flat tympanograms due to her ears being packed with fluid. She just had tubes put in a month ago, and we have seen a huge improvement in her speech since then, so hopefully things will improve for Noah as well.

Hang in there. I’m going to pm you that info.

[Anonymous]

hi rachael, i have a hard time remembering who is who on here—i remember your son’s name, but not any details about him—sorry! sylvia had her fundo done right before she turned 10 months old. i didn’t realize how bad her reflux really was until she had her ph probe and endoscopy—-kevin said he wasn’t surprised. she was failure to thrive and anemic. she was refluxing almost 25% of the time, overall—almost 29% of the time when she was upright. she had one reflux episode that lasted 44 minutes while she was sleeping. her esophagus was getting ulcerated. when they did her surgery they discovered that she had a good-sized hiatal hernia that had not been seen during any test. the surgeon told us that the hernia made the reflux uncontrollable. sylvia has had no complications what-so-ever from her surgery. she can burp, but she can not throw up—which scared me the first time she got sick and started wretching—-i thought she was choking on something. two of my girls and myself also have reflux and we are all on prevacid—pretty pricey, but so far we get a rebate. i recently had a scope done and was told i have severe reflux esophagitis. even on the prevacid, i am still having some trouble with my reflux and i notice i seem to get nauseated often. i don’t know if it is from the reflux or the prevacid. i think i might opt to have a fundo on myself at some point—–i don’t want to take meds the rest of my life.

why does your ped think that relaxed joints would have any effect on a fundo? what did his biopsies show? have you been to a ped gi?

kevieb2007-1-16 15:40:11

[Anonymous]

his tests were all basiclly normal but that is cos he is on high med of losec and cant come off to do tests. his biopsy showed that his esophagas was inflamed but not hugely due to meds??? his first scope came back that he was basiclly refluxing over long periods of time but not too severe and again he was on the meds.

my ped seems to think that kids with severe reflux tend to have relaxed joints and there is even a genetic condition which can cause this. noah has very loose joints and needs to get special splints in his shoes as he rolls with the ankles and has adapted by walking on his heels.

[Anonymous]

Rachael,

I’m so sorry to hear about little Noah!! I was just wanting to email you the other day to see how things were going. Lucas was sent to a surgeon to discuss a possible fundo and they left us with the same speech as Lori above– that although things are bad, they felt they weren’t bad ENOUGH to warrant a body-altering surgery. The surgeon told us that there is about 90% success rate, but with the other 10% things can turn into multiple surgeries, etc. etc. This was him talking, he wasn’t showing us articles with stats, so I don’t know how these stack up to what your docs might have said to you. Also, in our case, things improved dramatically on Lucas’ very limited diet, and also seemed to improve a lot when I stopped breastfeeding at age two (go figure, I hung on forever thinking it was better for his reflux) — and with age. At 24 mos when I weaned him, things were getting better but now at 2 years and and nearly four months of age, his sleeping is TREMENDOUSLY better. (which makes me think size is a factor as well).

He also has always pulled nad scratched at his years until they bled and would often have scratches in his ears. We’ve repeatedly asked for ear checks which have always turned out good. We had that test above (the long t-word, I can’t ever remember it- that Lori mentioned I think) and his ears were fine. He is very sensitive to sound and we’re not really sure what’s up with the ear thing. But day to day it doesn’t seem to be a huge issue. He’s on a high dose of zegerid, but it’s the same dose he’s been on since about 20 lbs, and now he’s at 30 lbs. In our situation, I can see how it was the right thing to skip the surgery and just deal with the horrible other issues ….but my child has improved dramatically and it’s a lot easier for me to say that on this side of things now.

I only wish you the best and hope you find peace with your decisions. It sounds like your docs have left a lot to be desired for little Noah and I’m so sorry for that. Hang in there and know we’re here for questions, etc. on our end.

Hugs to you and your family

[Anonymous]

hey there glad to hear lucas is doing better. i keep on thinking noah is too and then he gets sick and cant take a dose and all hell breaks loose! please dont talk about sleeping as i dont know what that is….same with eating and he is still breastfeedig all the time…sigh do you know if any kids have gone from silent reflux to vomitting when they are off the meds??

one of these days today when i know my sleep is not where it should be and i have all the patience of a slug for the children and want to just yell at them for everything. hate these days. we generally have a calm environment but when i have had enough thats it!

will hopefully get back to better now he is taking meds again. doesnt help that he is a stubbon little man! grrrr

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