Hi there,

I am new to this board. My son is now three. He was diagnosed with reflux as an infant. He used to projectile vomit occasionally, but always threw everything up. He was very miserable as a baby, and used to cry constantly. He has always had a hard time sleeping, and this really has not gotten any better. The story is so long, so I will try to keep it brief. He was on Nutramigen as a baby, and seemed to tolerate this ok. He has been on Prevacid and Losec with minimal improvement. He had a gastroscopy when he was 1 and a half. They never told us to take him off the Prevacid, so there was no evidence of any real problems. The specialist at the time told us he must have outgrown it and took him off of the medication. He has not been on anything since. He has continued to wake at night. He is on asthma medication because he sometimes wheezes. He has constant nasal congestion which drives his crazy at night. He is on Nasonex which helps, but his dose keeps having to be increased because it isn't working enough. They thought that he might have apnea and tried to do an at home sleep study, but he is so restless when he sleeps that he kept knocking off the leads and the alarm kept going off and waking him up. We asked finally for an ENT referral. He seems to think that ALL of his problems stem from reflux. He is going in for a possible adenoidectomy on Monday. My son has a very hoarse voice, often refuses to eat, has bad breath, sleeps horribly, and occasionally wheezes. The doctor is at least going to check things out before just taking out the adenoids. I am at a loss. I feel like a horrible mother that I allowed that doctor to take him off his medication years ago. He is obviously in agony and I just attributed it to asthma, nasal congestion due to possible allergies, and dry throat. His sleep problems....well....I just thought it was him. I feel very guilty and am so tired and so scared. He is a very difficult child, and cries a lot. He has at least 3-10 tantrums a day, and every little thing will set him off. He is a perfectionist, and if you move something 1 mm he screams. I don't know how much of this is because he is so tired and grumpy or if it is just him. It has been a very difficult 3 years. I am scared he has really bad reflux as I don't know what to do to help him. I guess we will know on Monday. I feel guilty even considering putting him for surgery, but don't know what else to do as we need some answers. I guess I just needed to feel like I wasn't alone in this right now. Thanks for listening.

Tannis

First of all...welcome!:hello2: I'm glad you have found us!

Sure sounds like you have had a rough time with things... ((HUG))!

I really hope that the Dr's can get things figured out for you and get a better plan in place!

Hi Tannis

You aren't alone....welcome...
My ds, Zachary, turned 3 in october and it has been a long hard road
So much of what you says rings a bell with me...I think 'some' of ds's issues are toddler stuff
My ds is so bossy these days and EVERYTHING has to be a certain way...i think some kids are generally more easy going than others...
BUT I know when my ds is in pain everything is magnified...more tantrums, longer tantrums, NO tolerance etc etc
Has your ds been allergy tested?
Do you think he reacts to foods?
My ds had several SI's and we also thought his adenoids were a problem, BUT the ENT checked his adenoids in the office using a scope...so for now we aren't doing surgery
My ds is on clarinex, nasonex, salt spray and singular
I didn't think it made sense, but adding singular really seemed to help with his allergies/irritability
I also kept a food log and my ds seems to react to many foods so we have tried several diets to see how he would respond..it seems, though odd, his biggest triggers are corn and gluten

Sorry this is jumbled and if I've asked you question you alreayd answered in your post, but just wanted to throw this out there before the kids went to bed

You are definately not alone.:hug:

I have three kids all of who have reflux and were not diagnosed until my youngest son was 14 months old and had hit many complications associated with GERD. My middle son was puking all over the place at the age of 3 and we were told it was still "colic".:angry7: We did not know any better and once we realized what the problem was the guilt was tremendous as he could have been helped SO much earlier as from the day of his birth he was a puker.

Curran was scoped in September and we were told he is free and clear of esophagitis and we could take him off the prevacid. So we did. And we did not really register the burps which turned into belching which turned into little pukes and then into bigger and more frequent pukes and such until it was absolutely undeniable, the kid is still refluxing. His scope was clear because the medication was working. Tonight at dinner, he ran to the bathroom, did not quite make it and puke in our kitchen. It has been quite awhile since we have been back to so much puking, but here we are.:banghead:

Asthma and illness in general really makes reflux worse. And do not forget that there is a GERD connection to a lot of asthmatics, be it through a food trigger or from aspiration. My youngest son has that connection.

As Kim said, I would definately investigate possible food allergies and intolerances. It is a place to start and often the best way is to go to a bland diet and then trial foods one at a time for a few days to watch for any reactions. It can be time consuming, but as allergy testing is not 100% accurate for this age group trial and error with foodstuffs IS accurate if you log it down and keep track. We did a total multiple elimination diet for our family (minus Iain, our little one) last January and it was absolutely wonderful for identifying many problems Curran has with foods. It also has made his reflux much better and easier to manage.

I totally hear you on the tantrums and such. Some kids are just like that, though. I remember how good a run we had with Walker and we just waited for the "terrible twos" to come and they really did not. We patted ourselves on the back and said job well done. ;-) Then we had Curran. Almost to the day he turned 2 we were wondering what had possessed the child. We looked forward to the time he would turn 3, marking the days off the calendar. He turned 3 and it was just as bad.:sad2: By then our third kid was on the way so we were wondering if we were going to survive...:haha: Truth is, we did. I know that a "normal" child can be quite a handfull at that age, but often one who has a chronic health issue and is in a lot of pain can be really rough to juggle. You just have to work on it and find what works for you and your son. We have Curran who is often in such intense pain he can not see straight, but still he is expected to learn how to deal with it in an appropriate manner and we try to help him with coping skills. Trust me, it is not easy but it can be done.

Don't feel guilty. Start from today and make it a new day for you as now you know a path to take. Don't beat yourself up for what is in the past.

I just wanted to say welcome and it sounds like he still does have reflux.

You are not a bad mom, we trust doctors. It's something that we do.
Don't beat yourself up. ((hug)) :hug:

Hi and welcome to the boards. I am very glad you have found this site. It sure will give you a ton of support. I am sorry that you are going through a lot with your son and hope that Dr's appointment on Monday will give you some answers. Please keep us posted. :hug:

Welcome!
I would fight to have him scoped and a ph probe. That will give you a definite answer as to whether or not he has reflux. Then go from there.
How is a scope going to show reflux damage if he's was on medication that prevents and heals acid damage? Sounds like that doc wasn't too bright.

Thank you all so much for your support! I am actually overwhelmed by it. It really does mean a lot. Thank you so much. To answer your questions: I agree that he does seem to worse some days than others. It seems that if his voice is hoarse he is more frustrated easily, probably because he is in pain. You are so right! He was allergy tested, but he was only a little over 1 at the time. The test was negative. I had major allergies as a child, so I wouldn't doubt if he had them as well. He doesn't seem to react specifically to any particular food though, at least not that I have noticed. I will have to start keeping track. That is a good idea. Leigh: I know what you mean about puking. Eric will still puke every once in awhile. Most of the time it is when he gets out of breath or after he eats. I never even connected that. You are so right about some kids are just more sensitive and more frustrating. :) Eric is definitely like that, but I love him so much and wouldn't trade him for the world. Lena: I agree completely that I probably need a ph probe and possible scope again. I am hoping that the ENT will be able to look down his esophagus far enough on Monday that that won't be necessary. He is so hoarse right now and has been for weeks. His Nasonex is also running out, so that is making things worse. I just don't want to give him anymore right now as I really want things to be as symptomatic as they can be for Monday so that they see exactly what is going on (not like last time). And yes....that doctor was an idiot. He tried to blame the whole thing on my post partum and being too sensitive. I blamed myself and questioned myself when I shouldn't have. To think, he is one of the most respected in Edmonton and is retiring right away. Maybe he should have retired a long time ago. :) Thanks again for your support. I will keep you updated. Take care.

Tannis

I think the ENT may be the best doctor able to get to the bottom of this. Or maybe a Pedi GI and ENT tag team would be the way to go.

Your child's reflux sounds a lot like my child's reflux. Eric will be going in to get his tonsils and adenoids removed on the 15th. Hopefully it helps. I think they contribute to his problems, but there's more going on than just large T and A's.

LPR (this is what it sounds like your son has, and I suspect my son does too)
Is treated a little differently than your typical reflux. Always with a PPI. Higher doses, for longer periods of time. Eric does really well on his maximum dosage of zegerid 2 times a day, but when the GI cuts it down, everything goes to crap again.

I would suggest you get a PH probe done. Make sure it's a double or triple probe. Double probe test measures acid levels at the UES (upper Esophageal Sphincter) and at the LES (Lower sphincter). A triple probe measures acid levels both LES and UES and the larynx.
A regular PH probe will only measure the levels at the LES, and with LPR or reflux that effects the airway, throat and larynx measuring just that area won't work. LPR episodes are usually quick, frequent, more damaging because the throat isn't as protected as the esophagus, and these brief acid spells won't always show up on a traditional PH Probe as a problem. Sometimes the acid gets up and sticks around the different parts of the throat, and just measuring the LES won't read that either.

Eric had a regular PH probe and the results came back minimal. Only refluxed quickly (only one long episode lasted only 3 minutes) 70 (something) times during the day and nothing showed up at night. The GI wanted to take him off all his meds!!!! He considered it "normal"

A scope could also be beneficial, especially if they take a good look at the larynx and airway too.

After my Eric's T and A surgery I have a feeling I will be stuck between a rock and a hard place. The ENT says if the surgery doesn't help with Eric's problems it's most likely a GI issue (other than the apnea that doesn't appear to be reflux apnea) and the Pedi GI says that most of Eric's symptoms are ENT related and he can't help. URGH!
It's frustrating.
Read up on LPR and just get as informed as you can.

Good Luck with whatever you decide to do next.

(((BIG HUG)))
I hope your little guy starts feeling better soon.

(I've got some great LPR links, and reflux related throat problem stuff. Just say the word and I'll post um here)

Of course you want the links LOL

Here are some of my favorites

http://www.pediatric-ent.com/learning/problems/laryngopharyngeal.htm

http://marci-kids.com/eerintro.html

http://www.emedicine.com/PED/topic1280.htm

http://www.emedicine.com/med/topic2976.htm

This is a google search full of PDFs I found helpful
http://www.google.com/search?hl=en&client=safari&rls=en&sa=X&oi=spell&resnum=0&ct=result&cd=1&q=Congenital+Laryngeal+Anomalies+Associated+with+G ERD&spell=1

http://www.entnet.org/KidsENT/LPR.cfm

http://www.cincinnatichildrens.org/health/info/ent/diagnose/laryngomalacia.htm

http://www.bcm.edu/oto/grand/11112004.htm

http://www.findarticles.com/p/articles/mi_m0BUM/is_9_81/ai_92281754

http://www.infantrefluxdisease.com/lpr.php

http://www.infantrefluxdisease.com/reflux_asthma.php

Hi, I just wanted to say welcome and you are not alone. Don't beat yourself up, you did what the dr said to do. We expect that the medical professionals to know what they are doing. It is very upsetting when they don't.

My son has been a monster the last few weeks. He has been sick, teething, and reflux issues. I see a diference in his attitued for sure when he is not feeling good. He is normaly very laid back and this week he has been throwing fits over everything! I am sure he will be much happier when he is feeling better.

Please let us know how it goes at the drs.

Thank you all so much for your support! I am actually overwhelmed by it. It really does mean a lot. Thank you so much. To answer your questions: I agree that he does seem to worse some days than others. It seems that if his voice is hoarse he is more frustrated easily, probably because he is in pain. You are so right! He was allergy tested, but he was only a little over 1 at the time. The test was negative. I had major allergies as a child, so I wouldn't doubt if he had them as well. He doesn't seem to react specifically to any particular food though, at least not that I have noticed. I will have to start keeping track. That is a good idea. Leigh: I know what you mean about puking. Eric will still puke every once in awhile. Most of the time it is when he gets out of breath or after he eats. I never even connected that. You are so right about some kids are just more sensitive and more frustrating. :) Eric is definitely like that, but I love him so much and wouldn't trade him for the world. Lena: I agree completely that I probably need a ph probe and possible scope again. I am hoping that the ENT will be able to look down his esophagus far enough on Monday that that won't be necessary. He is so hoarse right now and has been for weeks. His Nasonex is also running out, so that is making things worse. I just don't want to give him anymore right now as I really want things to be as symptomatic as they can be for Monday so that they see exactly what is going on (not like last time). And yes....that doctor was an idiot. He tried to blame the whole thing on my post partum and being too sensitive. I blamed myself and questioned myself when I shouldn't have. To think, he is one of the most respected in Edmonton and is retiring right away. Maybe he should have retired a long time ago. :) Thanks again for your support. I will keep you updated. Take care. Tannis

Listen for a cough or sounds from him after he eats or drinks as it can be easier to hear the reflux or to note any signs of aspiration also. I am so used to it now I rarely hear it anymore.:oops:

It is so great to have a doctor blame YOU for the problems instead of looking to see if there is a health problem with the child instead. :angry7: Sometimes doctors just do not do their job. I hope this ENT will do his job. Do not allow yourself to be blown off and tell him what you think. Get a gameplan from him and a timeline for sure.

By the way, I used to live in Alberta! Three Hills and Elnora. How is that for desolate?! :haha: We went to Stettlar (sp?) and Erskine areas a lot when we lived there. Obviously not often enough for me as I forgot how to spell Stettlar! lol

Thanks again for your wonderful words of support everyone.

Minnie-Thank you so much for that amazing information. I think you are absolutely right. He does seem to have LPR as it seems to affect his throat and nasal areas more than his tummy. He does choke almost everytime he drinks as well. His nasal area is also very red and irritated even with just looking at it without a scope. I have taken him off his Nasonex and he is just miserable. His nose is so congested and he is sleeping even worse, but I want things to be bad on Monday so that they can find out what is going on. Also, I was going to ask you about eating. Does your son refuse to eat breakfast in the morning? Also, when Eric eats he almost always burps afterwards. Is this the silent reflux? His breath is pretty bad too sometimes. I am checking out those sites and am learning more every day. Thank you so much!! I too am hoping to get some answers from the ENT surgery. I hope your son's surgery goes well too! You will have to let me know what they find out. I will definitely let you know as well. It is very interesting to find other people with the same issues....and makes it seem more real (not just me being overly sensitive). Thank you!!!!!!!!!!!!!!!!! I am also going to ask about a PH probe.

Katey-I know what you mean about doctors. I hope your little one is having a better few days. I remember when Eric was younger and was teething and refluxing and everything just seemed horrible. Take care of yourself!! :) HUGS!!

Leigh-He absolutely coughs and chokes every single time he drinks. He went for a swallowing study, but he refused to drink much at the time and they didn't get a great picture. I will ask about the PH probe as I agree that this may be the best way to see things. I live in Morinville, north of St. Albert. I am actually from Manitoba, but moved her about 7 years ago. I haven't been to Three Hills, but have heard of it! :) Alberta is a wonderful place to live. We really like it here. Take care!

Thanks again!

Tannis

I'm glad I helped :yahoo: Yea! 4 ME!!!!

"Does your son refuse to eat breakfast in the morning?"
Breakfast is the worst meal of the day and always starts the daily reflux marathon. (way worse when he was younger though)

Try waiting a little bit longer in the morning. I always had/have better luck giving him his medicine and waiting a while before trying to feed him.
Another thing I did/do was just let him take the few dysfunctional sips that he wanted for breakfast and then 15 minutes or so later he would sometimes be willing to eat more.
Now that he's older I have him "Help" me in the kitchen and let him pick out some foods to help his tummy get started, and I have much better luck.

"when Eric eats he almost always burps afterwards. Is this the silent reflux?"

Not necessarily. The burping could just be from the way he eats if he's swallowing lot's of air, and doing a lot of gulping.
I like to describe silent reflux as an internal barf. It sounds wet and is most always followed by lot's of swallows, and maybe some gagging and choking, arching, and fussing. But there are times when it seems to be just a burp, but then the arch comes and some fussiness. Burps with hiccups that follow are also a sign that the reflux is going to town.
Eric is a very burpy fellow. He also has a hard time burping too. He still needs my help to burp on occasion. Like it gets stuck in all the sloshing that goes on in there, and the only way to get it out is to pat him or rub his back for him. 2 years old and I'm still burping him (eye roll)

And the breath! Ewwwwwwww! Eric's breath can tell a thousand stories. I always can tell by his breath if he's having a hard time. You have the acidic smell of vomit (Usually only when he's off medicine, when his dose needs to be adjusted, or when it's almost time for his second dose) then you have the rotten garbage disposal smell. I don't know for sure what causes this, but I think it's food or refluxate getting stuck up in his throat and getting rancid. The ENT says that it could be food stuck in his tonsils/adenoids and hanging out, but Eric did this even while just on formula. He will get this smell if he eats certain foods that are harder to digest like oats, corn and peas. So I sometimes think a little DGE (delayed gastric emptying) might be going on. But it could just be that these foods make him reflux more and things get stuck high in his throat, or nose and start reeking.

GOOD LUCK! I hope the ENT is super great, and listens to everything that you need to say