LPR/ what is going on?

[Anonymous]

the probe will tell you how many episodes of reflux he has, how long each episode lasts, and what his overall percentage of reflux is. my oldest son used to have polyps on his vocal chords when he was young. he was constantly clearing his throat.

with obstructive sleep apnea, children will be rousing themselves from deep sleep all night long because they are having trouble breathing. this is what can cause failure to thrive because they produce the most growth hormone when they are in the deepest stage of sleep.

sylvia did not even seem to know she had the probe in. we had to stay at the hospital the whole time since it was 3 hours away, so if there had been any problem with her messing with it, they would have been able to take care of it.

did they do biopsies when they did his last scope? if they see no inflammation while they are doing the scope that doesn’t necessarily mean anything. it is the findings on a microscopic level that really tell if there is a problem or not. it could show reflux damage, esophageal thrush, or eosinophils. he could also be refluxing, but maybe not enough to cause any damage, just enough to be irritating.

even if reflux isn’t causing any damage, it still is uncomfortable. it sometimes feels like you have something in your throat, or it make a funny sensation in your chest. the only way babies can tell you that something doesn’t feel right—-is to cry. so it is possible that even if his reflux is causing no damage and not hurting him, it could still feel uncomfortable to him.

i doubt they would put him on a high dose of PPI if he had no esophageal inflammation and only vocal chord irritation. i don’t think the vocal chors would be irritated by reflux without the esophagus also being irritated.

if his tonsils and adenoids are enlarged it could be causing drainage, which could irritate his vocal chords. it could lso be causing some sinus congestion which could account for the face and ear rubbing.

when sylvia would fall asleep, she sounded like she was struggling to breath. when they went in to do her surgery, the ENT told me that her tonsils were “kissing” when she fell asleep and that they were full of debris. she has hardly had to see a doctor since then—she is 8 yrs old, now.

why do you have your son gluten and dairy free? is he still having trouble with solids, if so, what kind of trouble is he having? are they suggesting taking his tonsils and adenoids out?

[Anonymous]

i was looking back over this thread and had a couple of more questions. what makes you think he has motility problems? also, what is glue ear and what makes you think he has it?

[Anonymous]

He had a scope at 9 months. They did biopsies and found no inflammation at all on a microscopic level. Not even slight irritation which shocked me really. They tested for EE and celiac. Nothing!! His used to have arching episodes a lot when he was younger, but like my 4 month old daughter his symptoms were constant hiccups, gulping constantly, rubbing and attacking face and ears, very fussy all day, very poor sleep, etc. I always suspected motility problems bc of constipation issues and he used to reflux hours after his last bottle. His symptoms have always been in the sinus area. Every 40 minutes in sleep he would swallow, rub his nose and ears. Now he swallows when he sleeps but I can’t tell if its his drool cuz he is a mouth breather or maybe postnasal drip. So between the adenoids tonsils and vocal cord irritation I have always suspected it was a result of reflux. If you look up PPR which is silent reflux it says most patients show no esophagus damage. Most of the damage is in vocal cords and sinuses. It just shoots up and bc of the esophagus has a protective lining its gets away with little damage. I have him on a gluten and dairy free diet bc my husband and I don’t do well with dairy. As for gluten I eliminated it completely a couple of years ago and goodbye stomach issues. So, I just would like to keep him on a low allergen diet. Thanks for your replies!!

[Anonymous]

LPR is what I meant above. Damn autocorrect!! Lol. Glue ear is sticky fluid in middle ear. Im having him tested for that today. It could cause pressure, ear pain, and restless sleep

[Anonymous]

if your son is having a BM every other day i’m not sure they would even consider that constipation—ideally, they should have about 3 soft BMs a day, but i think if he has been consistently this way–it may just be what is normal for him at this time.

my oldest daughter used to spit up so much. she would xspit up long after she had been fed–but she was the happiest and most content of my 9 children as an infant. my 3rd child cried for 2 years, was very small, and spit up all the time. he had tons of ear infections, too. looking back, i think he probably had MSPI.

sylvia started out having problems with desatting–she came home on oxygen. she was on it for a month. i think it was her reflux that was causing the desatting. she was so fussy—we had to hold her almost 24 hours a day for the first two months. i slept in a recliner with her lying on my chest. she spit up more and more over time. i would nurse her and she would spit up and then i would nurse her again. when they did a fundo, they discovered a hiatal hernia that had not shown up during 2 upper GIs and a scope.

i have really bad reflux, also. i have had it for 20 years now. i have a hiatal hernia—pretty sure i developed it when i carried my twins. the surgeon talked to me about having a fundo in my early 30s–i didn’t want to do it back then—but h told me it was just a matter of time before i would have to have it done. i have had to have 3 scopes in a 4 year period to have my esophagus dilated. my most recent scope was last december and it showed that i had eosinophils—enough that i could possibly have EE. i have never had eosinophils show up before. i thought it was only food allergies that could cause them, but our ped GI told me that environmental allergies can cause EE also. he also tells me that EE is a contraindication to doing a fundo. i fight taking a PPI, although i really need to be on one all the time.

our family was involved in a celiac study a number of years back and we discovered that kevin and i and 8 of my 9 kids all have one of the main celiac genes. both of my twins had scopes done and neither of them showed celiac damage–tianna had one spot that was questionable—but their Ttg tests were positive. celiac damage will not always show with a scope—it can only get about 6 ft into a 22 ft small intestine.

if you have him gluten free, celiac testing would show up nothing—even if he had it. they need to be eating gluten for a celiac test to be positive and for damage to show.

anyway—i was giving you all the history to let you know we have dealt with alot of what you are talking about. i know that every child is different—but from most of what you describe, it really sounds like reflux is not the main issue that is going on with your son. the enlarged tonsils and adenoids seem like they could be a very likely culprit to be causing his problems.

if they are both enlarged, and he is a mouth breather—i am surprised that they haven’t recommended that you get both of them removed.

i have 3 kids that have had tubes in their ears. my twins got them at 11 months old and molly got them at 8 months old—interestingly, they are also my 3 kids with celiac disease. i’m sure my 3rd son would have done better with tubes. he always seemed to have a cold for most of the winter–i suspected allergies, but testing showed no allergies. when we had him tested for celiac, we discovered that he is IgA deficient—-so i think that he probably does have alot of colds through the winter.

i’ve rambled enough—i’m interested to hear how the ear check goes today.

[Anonymous]

Well he eats oatmeal so there is some gluten in his diet. Why do u say it sounds like reflux is not his only issue? To me I think reflux is causing all this. The inflamed adenoids, tonsils, vocal cords. Im interested in what you’re saying. He goes pretty much everyday but its not that soft. I give him digestive enzymes and probiotics and he still struggles. I was so antimed and BAM my babies come along hurting and I have no choice. .y husband and I spent thousands on naturopaths and nothing helped.

[Anonymous]

You mentioned of your kids was a miserable baby for two years. Then what happened? Was it like a flip of a switch? Did he start sleeping and acting better?

[Anonymous]

Sorry I always forget something. My son is IGA deficient too. At least I think he is. He was found to be deficient and then the last test they did it came up astronomically high!! So who knows. We are checking it again in a couple of weeks. Thank God for your replies. I thought I would get more responses. Thank you for taking the time to reply to me. Its nice to know im not alone.

[Anonymous]

ENT update: THE MYSTERY CONTINUES!!! AGGH

Well, I went for the 2nd opinion. The first ENT said he had enlarged adenoids and tonsils and was ready to schedule his surgery. Took him to another ENT today. He said they are enlarged, but not the point that he thinks we should put an 18 month old through surgery. He said he is too healthy to be a candidate for surgery. He doesn’t snore and he was in his office and didn’t notice any breathing difficulties. My son was sucking on a lollipop and said if he was struggling he wouldn’t be able to suck on the lollipop without struggling. I have to admit. He doesn’t seem to be struggling to breathe at night. He does mouth breathe and he does sound congested at times, but he never gasps. He is just really restless. He took a look at his larynx and said there was some mucous and it was irritated but not severely. Not enough for him to conclude that he has serious reflux. He also said he is on 15 mg of prevacid so that may be the reason he is only seeing slight irritation, but not enough for him to make a diagnosis. So, the saga continues. He doesn’t think removing the adenoids will improve his sleep. Oh man, back to square one. This sucks. He was sympathetic to the sleep situation, but on his end there is nothing he can do. I guess this is reflux still. who knows. he said we will just have to wait til he outgrows it. He doesn’t think we should put him through a probe though bc the outcome will be doing what we are already doing. This sucks!

[Anonymous]

Kevieb,

When u said ur son was miserable for 2 years did he change drastically when he turned 2? Im just looking for hope. Anyone in my situation have a success story. Please post! It means a lot to me to hear positive stories. Just to know there is light at the end of this tunnel

[Anonymous]

No success stories? It’s either everyone is super busy or people are looking at this thread saying, ‘oh he is 18 months and still refluxing? You’re screwed honey!!” I’m hoping it’s the former!

[Anonymous]

I don’t think you are back to square one. You have 2 docs with 2 different opinions. Unfortunately that is medicine. 3 different people will have three different opinions, including the moms on the board. This reflux thing is a whole bunch of trial and error to find the magic potion for you LO. Things were past ugly for Ryan for well over a year. I will save you the sorted details. Suffice to say that it was really bad. There were opinions abound… but no concrete answers. Most people just thought I was nuts and that Ryan was not that bad… then I blocked all those people out, listened to my instincts, found the right people to help and the right meds. Ear tubes helped a ton and the major turn around was discovering Caracream. In a matter of 10 days of mixing the caracream with the prevacid he did a complete 180. Completely stunned everyone.. The ped, the GI, the ER and my family. The light bulb turned on for them and they realized that things really were that bad and it really was the reflux…. even though the scope was clear… and he was on 30 mg of Prevacid… But I digress. You can not get Caracream right now, but you can get Zegerid. If I were in your shoes I would really consider the tubes and the adenoids. Neither one of them are painful. I would wait on the tonsils for now. See what the Zegerid, adenoids and tubes do first. Again.. this is just my opinion on what I would do… did do… only I didn’t do the adenoids and am still regretting that one. None of us can tell you what to do. You have to make the choice on behalf of your loved one. My suggestion is that you tackle your decision in a very pragmatic way. Research and read all you can. Look at your pluses and minus, make a decision and do it… and don’t 2nd guess yourself. That really is all you can do.

[Anonymous]

sorry i’ve been so long getting back–i’ve been a bit preoccupied with two daughters getting married!

my son that cried for two years seemed to transform almost overnight—i had to be down for several weeks before my twins were born, and during that time he just seemed to settle down and stop crying and he put on osme weight. i think he probably had MSPI and he outgrew it right about 2 years old. good thing, i would have been loony if i had a crying two year old and newborn twins. my son had other issues going on, though, too. we thought he might be autistic–he went to a special pre-school for two years and then a regular preschool for one year before he went to kindergarten. he didn’t talk until he was 3. he spoke gibberish and had echolalia. we did some programming-like exercises with him. he eventually started talking and went to a regular classroom in school.

it seems a little strange that the ENT would make a recommendation about a PH probe—because that is really not his area of specialty. a GI would be the one to talk to about doing a PH probe.

have you seen a regular GI or a pediatric GI? i would recommend seeing a pediatric ENT instead of a regular ENT.

oatmeal does not contain gluten, but it is very likely to be contaminated. we buy guaranteed gluten-free oats and my celiac girls don’t have any problem with it. if you are wanting to keep your son completely gluten free to eliminate all allergens then the oatmeal needs to go, too. you also need to watch for hidden gluten in ingredients.

sylvia did not have any problem breathing when she was awake–so i think the doc was a little off when he said your son would not be able to suck on the lollipop without trouble—sylvia only had trouble when she went to sleep. if i was holding her, she sounded fine—-until she fell asleep—then she sounded like she was struggling to breath.

why did the ENT think the outcome of the PH probe would be to keep doing what you are already doing?

[Anonymous]

I did see a pediatric ENT. He said he saw an irritated larynx but it wasn’t severe. He said it wasn’t too bad and wouldn’t make him think reflux off the bat. Well my son has silent reflux/LPR. Don’t ENTs diagnose that. The fact that your son outgrew it at 2 gives me hope. Maybe he just had an immature gut like my son seems to have. Whe knows. Did your son wake up a lot atnight and during naps. Every 45 minutes something seems to happen. He looks uncomfortable but no obvious refluxing. He just sounds congested which to me means reflux is irritating sinuses. To be continued my son needs me lol…

[Anonymous]

As far as ph probe he said you put the kid through it, it is not pleasant and they find reflux and tell you to medicate like you are already doing. Well, obviously what i’m doing isn’t working. Ughhhh this is crazy!! If you can’t get help from so called ‘professionals’ who out there can help you? I’m frustrated and hurt, more like heartbroken!

[Author]

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