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

[LisaR]

Phaso zero, as I'm using it, means wiping the slate clean and starting over using a different method, i.e. in this case, a different set of medications together. If you have already tried a PPI, a decongestant and a steroid inhaler like flonase, together, at the same time, for months at a time, then I misunderstood you. I took you to mean you have tried them all in various +/- combinations, at different times. (It is very hard to ascertain details here.) There will always be other variables, like age, and season, and many other things, that can affect how medications work, so IMO it's worth a try trying it this way before saying it doesn't work or moving on, but as always, it's up to you.


You asked for opinions and suggestions and I'm just giving you mine. It's just how I'd handle it, I think, but there's really no right or wrong way here. I'm going to drop it now so others can chime in, and say good luck, I hope your son gets the relief you seek and I hope maybe something I offered was helpful.

I absolutely appreciate your opinions and you have been very helpful!

I really do believe we have exhausted every resource when it comes to medication. Like I said, it seems to be the only thing that doctors actually agree on. I hope we can get some answers.

 

[mom2grace]

Have you considered food allergies or sensitivities? Especially since it happens after he eats?

 

[LisaR]

Have you considered food allergies or sensitivities? Especially since it happens after he eats?

He has been tested for food allergies many times and he was always hypersensitive showing positive to a ridiculously high number of things. I truly believe there has been a great deal of inaccuracy in this testing (whether that is the nature of the testing or the nature of my son, I don't know).

He has had many food challenges and always passes, but ingestion is another thing altogether. He is on a very allergen friendly diet.

 

[disfan07]

He has been tested for food allergies many times and he was always hypersensitive showing positive to a ridiculously high number of things. I truly believe there has been a great deal of inaccuracy in this testing (whether that is the nature of the testing or the nature of my son, I don't know).

He has had many food challenges and always passes, but ingestion is another thing altogether. He is on a very allergen friendly diet.

What do you mean by he passes food challenges but ingestion is different? Fod challenges involve ingesting to fod in question. And he could be having a delayed reaction. One of the reasons my allergist won't do food challenges with me is because my more mild allergies tend to be delayed reactions so I would have to spend all day in her office to get an accurate assessment. I've had reactions delayed by as much as 24 hours.

What do you mean by allergen friendly diet? Is he off all top 8 allergens plus other common ones like sesame?

Has oral allergy syndrome ever been discussed?

 

[LisaR]

What do you mean by he passes food challenges but ingestion is different? Fod challenges involve ingesting to fod in question. And he could be having a delayed reaction. One of the reasons my allergist won't do food challenges with me is because my more mild allergies tend to be delayed reactions so I would have to spend all day in her office to get an accurate assessment. I've had reactions delayed by as much as 24 hours.

What do you mean by allergen friendly diet? Is he off all top 8 allergens plus other common ones like sesame?

Has oral allergy syndrome ever been discussed?

Sorry, I should have been more specific. My son used to react from just touching food when he was little. If he picked up a potato, touched a nut, put his hands in milk (preschool project ) he would be covered from head to toe in hives. So when his symptoms started to improve, the allergists mainly just did food challenges with touch NOT ingestion. The only ingestion test was egg. He had only tested slightly allergic to eggs years earlier and he really wanted to eat an egg. The allergist tested him multiple times over a period of months and determined egg was safe. When it was time to move up to eating one entire egg, his entire body swelled up. Very frightening! Because of this, allergists over the years have agreed with our theory that it is just safer if DS stays away from the top 8 and other more common foods that are known allergies.

Oral allergy syndrome was discussed in length when he was younger, but that is something we haven't talked about at all recently. That is definitely something I will want to readdress. Thanks for reminding me of that!

The general conclusion from every doctor we have ever seen over DS lifetime is that his body is hypersensitive. He is the type of person who used to break out in hives if you just held his hand. Thankfully, he isn't like that anymore. Actually, the whole nasal issues started at about the exact same time his body became less sensitive. He went from having hives at least four to six days a week covering large portions of his body to rarely having a single hive now (maybe once every six to eight weeks and they are very mild). Hmmmmmm......I never thought about that connection until now.

 

[Pembo]

Do you keep a daily journal? My doc suggested this to me. Everyday write down symptoms and also think about triggers - ie. food that was eaten, activities etc. You may find a pattern.

You said things changed a couple years ago - puberty and hormones could be the trigger. My allergies have changed many times over the years coinciding with my hormone levels (babies etc).

Good luck to you and your ds.

 

[LisaR]

UPDATE:

Went to the gastroenterologist. I loved her! I wish she could be our regular doctor. She listened, asked questions, gave her opinion, didn't rush, and was just so pleasant.

Her opinion:
She sees absolutely no signs that would warrant a scope at this time. She said there are times when the symptoms are silent, but her opinion is that he has a very clear diagnosis of sinusitis (she saw the reports) so she feels we should address the obvious issue first. If that doesn't resolve his problems, we can revisit the option of scoping him.

She said the test results and the symptoms all line up with sinusitis and she feels very confident that those issues should be addressed before anything else without symptoms are addressed.

She did suggest a second opinion from an ENT because she feels that anytime someone needs surgery, they should get another opinion. DS was in full nasal flare up in her office and she said as bad as he was, she can't imagine another ENT would say surgery wasn't necessary, but it doesn't hurt to get another opinion. She recommended ENT that she uses for her own DD so I will call them tomorrow for an appointment.

I greatly appreciate all the opinions and advice!!

 

[Dizneefamily+4]

UPDATE:

Went to the gastroenterologist. I loved her! I wish she could be our regular doctor. She listened, asked questions, gave her opinion, didn't rush, and was just so pleasant.

Her opinion:
She sees absolutely no signs that would warrant a scope at this time. She said there are times when the symptoms are silent, but her opinion is that he has a very clear diagnosis of sinusitis (she saw the reports) so she feels we should address the obvious issue first. If that doesn't resolve his problems, we can revisit the option of scoping him.

She said the test results and the symptoms all line up with sinusitis and she feels very confident that those issues should be addressed before anything else without symptoms are addressed.

She did suggest a second opinion from an ENT because she feels that anytime someone needs surgery, they should get another opinion. DS was in full nasal flare up in her office and she said as bad as he was, she can't imagine another ENT would say surgery wasn't necessary, but it doesn't hurt to get another opinion. She recommended ENT that she uses for her own DD so I will call them tomorrow for an appointment.

I greatly appreciate all the opinions and advice!!

Thanks for the update! So glad you liked the gastroenterologist- and hopefully you won't need her in the future! I hope that your ds gets some relief soon. And if your 2nd opinion also recommends surgery, I hope that solves the problem!