Doctors disagree: acid reflux, allergies, sinus, none of the above? (UPDATE post 47)

[LisaR]

Long - sorry. I'm just so frustrated.

DS (16) has had problems since he was little (severe allergies, hives, vomiting, unable to gain weight). Thankfully, most of his issues have either resolved or lessened significantly.

About two years or so ago, DS started getting cold like symptoms every single month. His nose pours for days on end and he sneezes like crazy. He has never had a fever with these and none of us have caught it from him.

All the doctors agree that these aren't colds. That is the only thing they agree on.

His regular doctor has tried numerous medications and ran tests before referring us to both an allergist and an ENT because a CAT scan showed his sinuses to be impacted.

We saw the allergist first. He said we should NOT go see an ENT because it is guaranteed that he will want to do surgery because that is what ENT's do. He does not feel he has sinus problems that are severe enough to warrant surgery.

After running tests, the allergist said he does have some severe allergies. DS has attempted to have allergy shots three times in his life and had anaphylactic reactions each time so the doctor is hesitant to try shots. He said if he can get shots without reacting, there is a 50% chance that he will have "some" relief.

The allergist feels that DS has GERD or some other stomach issue going on and that is the reason why his nose is in a constant state of stuffiness and he coughs after he eats. He does not and has never had heartburn, nausea, bad breath, or burping. The allergist said the color of his nose and throat are the indicators that it is reflux. He has referred us to a gastroenterologist and feels he should be scoped.

In the meantime, we went to the ENT. The ENT feels his sinuses are severe enough to warrant surgery. Two cavities are clogged and a third one has an air-pocket in it which is apparently a bad thing. He wants him to have sinus surgery which is very minor nowadays. They just put a wire up the nose with a balloon on the end just like angioplasty. The nose isn't packed like they used to do and DS can return to all normal activities the very next day. The ENT does not believe acid reflux plays any role in this.

It is so frustrating hearing two very different things!

I guess I could get a second opinion from another allergist and ENT (although both are suppose to be tops in our area).

Any suggestions, things I am overlooking, or opinions on what you would do would be greatly appreciated.

The only thing I know is that my son has sneezing, blowing fits at least monthly, usually more frequently, and it lasts for days. I just want him to have some relief.

 

[Dizneefamily+4]

There is such a thing as "silent" reflux. His body could be refluxing and not experience the typical reflux symptoms. It wouldn't hurt to see the GI doc and get their opinion. My DS12 was a reflux infant and has had GI issues his entire life. He sees a pediatric GI at Children's Hospital in Milwaukee (2 hours from where we live) twice a year for maintenance visits to monitor the meds he's on. The 1st step to determine reflux is usually an upper GI series - they have him drink a milky/chalky substance (barium) and then they x-ray his chest as the barium goes down. They can determine if there's any reflux going on. My DS has had this done twice -once as an infant and once when he was 10. After the upper GI when he was 10, the pediatric gastroenterologist then scheduled him for the scope. It was an outpatient procedure that was very easy on him.

I'd say rule out reflux before opting for surgery. If reflux is ruled out, I guess I'd go with the ENT doc's recommendation because of the state of his sinuses. JMHO of course!

 

[mrsklamc]

Sorry you and your son are going through this.

After bad experiences with two different types of specialists (one of which was also supposed to be tops in our area) I am a HUGE believer in second opinions.

Hearing your story, I lean toward going with the ENT more because of 1)your son's history of reactions to allergy shots and 2) the allergists claim that 'the 'ENT will want to do surgery because that's what they do.' That is an unfair statement for the allergist to make. There are lots of good doctors out there who will not opt for surgery if they don't think it's warranted.

 

[lovemygoofy]

I had undiagnosed reflux for a good long while and I always had breathing problems constantly coughing and blowing my nose. Finally the allergist figured out I had acid reflux. It was causing all the other problems.

However to make it more complicated I also had to see an ENT because the reflux had caused such problems that my tonsils were permanently infected.
When you say surgery, what are you referring to having done?

 

[ellone]

A doctor that is a naturopath would look into your son's diet to try and find the root cause. Most likely they would have you cut out GMOs from the diet.

I had acid reflux from my early twenties up until I stopped eating foods with GMOs a few years ago. I remember always having Tums or stronger acid controllers in the house since I'd have issues most days a week. Now I don't even have any acid medication in the house. I never have problems anymore.

 

[MAW137]

I have a very similar situation but I am an adult. I do allergy sots and then had a ct scan of my sinuses when I still sounded like I had a cold. Saw an ENT doctor who tried meds first but they didn't work. Had sinus surgery in June and I am still suffering with the same symptoms as before. Cough, having to blow my nose all the time, and no sense of taste or smell. Now on steroids and hoping to get my senses back to normal. I was not back to normal the next day after sinus surgery. My nose wasn't packed but had plastic sheeting in it to keep my nose straight since he had to fix the septum. I hope he is back to normal the next day but don't get your hopes up. Good luck. It is a long road ahead.

 

[brmom]

I have a son with very similar symptoms with the addition of mild asthma. He was treated for reflux for several years and symptoms moderated but did not go away. He was recently diagnosed with Eosinophilic Esophagitis. EE is diagnosed by a gastroenterologist who did an endoscopy and biopsies the lining of the esophagus
looking for eosinophils...Basically, it is allergic inflammation of the esophagus that causes gastric symptoms. My son turned out to have food allergies that had not been detected and as long as he avoids those foods most of the gastric symptoms have stopped. He is treated by both an allergist and a gastroenterologist. I would probably look for a second opinion and ask about the possibility of E E.

 

[LisaR]

I have a son with very similar symptoms with the addition of mild asthma. He was treated for reflux for several years and symptoms moderated but did not go away. He was recently diagnosed with Eosinophilic Esophagitis. EE is diagnosed by a gastroenterologist who did an endoscopy and biopsies the lining of the esophagus
looking for eosinophils...Basically, it is allergic inflammation of the esophagus that causes gastric symptoms. My son turned out to have food allergies that had not been detected and as long as he avoids those foods most of the gastric symptoms have stopped. He is treated by both an allergist and a gastroenterologist. I would probably look for a second opinion and ask about the possibility of E E.

My son was tested for EE when he was around the age of 7 by the leading specialist in the disease at Cincinnati Children's Hospital. He not only did not find EE, he didn't find any other cause for his vomiting. A month after all that testing, my son stopped vomiting and hasn't gotten sick since.

 

[rwdavis2]

Reflux can cause coughing without heartburn. I had it for a couple months until is subsided.

 

[LisaR]

I had undiagnosed reflux for a good long while and I always had breathing problems constantly coughing and blowing my nose. Finally the allergist figured out I had acid reflux. It was causing all the other problems.

However to make it more complicated I also had to see an ENT because the reflux had caused such problems that my tonsils were permanently infected.
When you say surgery, what are you referring to having done?

I'm glad to hear that you had nose issues associated with your reflux because I haven't found many things that connect the two.

The surgery is called sinuplasty. It is similar to angioplasty where they insert a wire with a deflated balloon on the end and open the balloon. He doesn't have a deviated septum or anything else that should cause complications. They actually do this procedure in the office with just a local for adults. For kids, they do knock them out.

 

[Pea-n-Me]

I believe they are related! (The reflux can cause you to feel like there's something caught in your throat.)

My DH and DS both have these issues, too. (As do most of the men and some of the women on DH's side of the family.) DH has had the major sinus surgery and it only helped for a few years.

DS has bad seasonal allergies. He doesn't always do it, but he's supposed to take a Claritin and flonase daily during allergy season. When he does, it helps.

Does your son take anything like flonase? Something like omeprazole can help the reflux, if you want to treat it.

I think you will get differing opinions no matter how many doctors you see. It might be trial and error, and going with the one you like the best (for whatever your reason, whether it's personality or treatment plan, etc.).

 

[LisaR]

Reflux can cause coughing without heartburn. I had it for a couple months until is subsided.

Coughing is the most minor of his symptoms. If he coughs, it is after he eats or when he is in the shower. It isn't a major coughing fit. It isn't even something I would think to mention to any doctor, but the allergist was grilling me on symptoms and asking if he ever coughed at all. It isn't like he even coughs everyday.

His major symptoms are out of the blue sneezing, stuffy nose, blowing fits. They come out of nowhere and last for hours, subside slightly when the Benadryl kicks in, and pick right back up again. This lasts for days. And then, just as fast as it started, it is gone and he doesn't sound or look congested at all. It was happening about every 4 - 6 weeks and lately it seems to have picked up in frequency. Pollen is horrible right now and even I am sneezing more so I am sure that factors into it.

 

[LisaR]

I believe they are related! (The reflux can cause you to feel like there's something caught in your throat.)

My DH and DS both have these issues, too. (As do most of the men and some of the women on DH's side of the family.) DH has had the major sinus surgery and it only helped for a few years.

DS has bad seasonal allergies. He doesn't always do it, but he's supposed to take a Claritin and flonase daily during allergy season. When he does, it helps.

Does your son take anything like flonase? Something like omeprazole can help the reflux, if you want to treat it.

I think you will get differing opinions no matter how many doctors you see. It might be trial and error, and going with the one you like the best (for whatever your reason, whether it's personality or treatment plan, etc.).

Yes, DS has been on every medication and nose spray known to mankind, it seems. Nothing really helps. I am not even sure Benadryl helps, but it makes him so tired that he falls asleep so the symptoms don't seem as bad.

 

[Pea-n-Me]

Yes, DS has been on every medication and nose spray known to mankind, it seems. Nothing really helps. I am not even sure Benadryl helps, but it makes him so tired that he falls asleep so the symptoms don't seem as bad.

But does he take the Claritin and flonase daily, as a preventative, i.e. regularly? If not, give it a try. Benadryl is more for, if there are still symptoms after the above, as it has unwanted side effects like drowsiness, as you've seen.

 

[Pea-n-Me]

Other thoughts: what is his hair like, and do you keep your windows open? If his hair is long, it can trap pollen up by his face. Showering before bed can help, and changing his pillowcase daily. (As well as keeping windows closed, if possible, especially in his room. (I know you probably have central air, but maybe someone else can benefit.)

 

[LisaR]

But does he take the Claritin and flonase daily, as a preventative, i.e. regularly? If not, give it a try. Benadryl is more for, if there are still symptoms after the above, as it has unwanted side effects like drowsiness, as you've seen.

He is not on Claritin and Flonase now. Claritin has never worked for him. All of his past allergists have always told me that Claritin is the weakest allergy medication on the market. He is currently taking Allegra daily, but has tried many others, as well. He was on Flonase for a time and Verimist was his most recent one. Both of those were prescribed by his regular doctor. The allergist removed all nasal sprays and feels they are causing more harm than good. While I don't understand his reasoning behind that, I can say that there hasn't been any improvement at all in using them for the past 18 months so stopping them now can't make it much worse.

Other thoughts: what is his hair like, and do you keep your windows open? If his hair is long, it can trap pollen up by his face. Showering before bed can help, and changing his pillowcase daily. (As well as keeping windows closed, if possible, especially in his room. (I know you probably have central air, but maybe someone else can benefit.)

His windows are never open. He showers every night and most mornings. His pillowcase is rotated about three times a week. We have the best filters money can buy on our A/C system. We don't have any carpet in our entire house. His bedroom door is kept closed. His mattress and pillow are completely encased in dust mite covers. His ceiling fan is left off in his room. Blankets and bedding are washed weekly in hot water. We've dealt with his allergies for years so this stuff is just second nature for us by this point. But something changed about two years ago that made his symptoms seem out of control.....allergies, sinus problems, acid reflux, a combination of them all??

 

[disfan07]

Yes, DS has been on every medication and nose spray known to mankind, it seems. Nothing really helps. I am not even sure Benadryl helps, but it makes him so tired that he falls asleep so the symptoms don't seem as bad.

IMO, I would try the sinus surgery. I know a lot of people who have had it and it is a very basic and easy surgery.

Has he had his IgE tested? If he has and it's within normal ranges, I'd be inlined to think the symptoms are something other than allergies r at least something in addition to it because *most* people with allergies and normal IgE respond to at least some type of allergy medication.

Has he been tested or eosinophilic gastroenteritis? It's in the same family as EE but much less common. Has he been tested for mastocytosis? If he's had unexplained anaphylactic reactions and GI symptoms, that's a possibility as well. Both are long shots but worth a look.

And as others have mentioned....silent reflux. Have you tried reflux medications? If not, that woud be my first thought.

I have similar symptoms plus a whole host other symptoms that have landed me in the hospital for more than 3 months total over the past 3 years. We are still in the process of diagnosis but my current diagnoses are:

Severe environmental allergies
Severe multiple. Food allergies
Elevated IgE (ranges anywhere from 1200-5000+)
Exercise induced anaphylaxis
Idiopathic anaphylaxis
Possible mastocytosis (were still waiting for confirmation)
Severe asthma
GERD
Eosinophilic gastroenteritis

It has taken 3+ years to get these diagnoses. Its been a ridiculously long process and were still not done (we are probably headed to Mayo clinic sometime this year) so I completely understand the frustration.

Have they mentioned xolair? If he has asthma and allergies and a reasonable IgE, it's an option. It's the medication I need but I'm too sick to qualify because IgE has to be <700.

Getting a second opinion from another allergist or ENT is probably not a bad idea if you aren't satisfied with the current options. Hopefully you find an answer soon.

 

[Pea-n-Me]

How old is he? My DS15 had a change two years ago as well. I guess we're fortunate this routine works for him - when he uses it. (He's had tons of sneezing, hacking, red eyes and afternoon benadryl naps this summer, too! He obviously didnt do what he was supposed to do!)

It doesn't matter whether it's Claritin or whatever - it's just what works. Just a preventative. I'm surprised an allergist would say it doesn't help, but that's neither here nor there. I think the bigger point is that you just have to keep trying until you find what works for him. Have you considered simply working with your pediatrician on it? They certainly see their share of allergies and asthma!

 

[disfan07]

He is not on Claritin and Flonase now. Claritin has never worked for him. All of his past allergists have always told me that Claritin is the weakest allergy medication on the market. He is currently taking Allegra daily, but has tried many others, as well. He was on Flonase for a time and Verimist was his most recent one. Both of those were prescribed by his regular doctor. The allergist removed all nasal sprays and feels they are causing more harm than good. While I don't understand his reasoning behind that, I can say that there hasn't been any improvement at all in using them for the past 18 months so stopping them now can't make it much worse.



His windows are never open. He showers every night and most mornings. His pillowcase is rotated about three times a week. We have the best filters money can buy on our A/C system. We don't have any carpet in our entire house. His bedroom door is kept closed. His mattress and pillow are completely encased in dust mite covers. His ceiling fan is left off in his room. Blankets and bedding are washed weekly in hot water. We've dealt with his allergies for years so this stuff is just second nature for us by this point. But something changed about two years ago that made his symptoms seem out of control.....allergies, sinus problems, acid reflux, a combination of them all??

Is Allegra, Flonase, and Veramyst all that he's tried?

There are a lot more options for allergy meds. Zyrtec, atarax, Zetonna nasal spray and patanase nasal sray are just a few other options. If your allergist won't prescribe a nasal spray I'd find a different one because that's crazy IMO.

My current regimen is:
Zyrtec, Benadryl, Zetonna spray, patanase spray, and pataday eye drops everyday
I also take Allegra if needed.

If thats all that's been tried for allergy meds I would get a second opinion and try some other meds.

 

[abdmom]

Both my father and my cousin had sinus surgery. My father had suffered terribly with allergies all his life and had the surgery when he was about 50-55. He felt soooo much better after the surgery and didn't suffer ever again.