Brayden's doctor's were pushing for more testing and possible surgery last month but then when we went to the GI 2 weeks ago, they said to hold off because he gained 4 oz this month instead of staying the same or losing and he was acting better. However said to call if he started to do bad and we'd schedule it...

He's not doing great again - really fussy and I hear him refluxing a lot. I think his weight may have dropped a little again. (He is still wearing the same clothes from last summer)

Do I do the scope and ph probe?

My dilemna is: Right now its absolutely free. We don't pay one cent for any procedue, office visit or medicine. In September, the insurance changes and it's a $500 deductible and 30% copay for the testing and we are absolutely broke (negative cashflow). (plus their medicine combined will cost another $350/month)

But I don't want to put him through this if it won't make a difference in his treatment. But I also don't want him to nosedive and we need to do it anyways, and now it costs us too much.

I certainly won't put money before his well being - but I absolutely can't figure out what is best for him. Any thoughts either way????

:hug: I"m sorry to hear he's refluxy again.

What tests/surgery are they looking to do? How much does Brayden weigh and what is his height?

Poor you....I know where you're coming from - you hate to put your child through testing, but if the insurance company is going to pay for it in full you might as well do it now, than later - if you see the GI pushing for it down the road anyway.

Very tough call.

Gosh, it is so dificult to decide whether or not to put your kids through these tests! What tests has he had before? If he's still having trouble with refluxing and weight gain you may want to at least have him scoped to make sure there's no damage. I'd say wait and see but with the insurance paying 100% it would probably be a good idea to go ahead and do it. I know it's so hard! As far as the Ph probe I'm not too familiar with it and what results come from it so I don't know how helpful they are at coming up with treatment. :hug:

Well - it's out of my hands. I called to "discuss" it two days ago, but had to leave a message. Today I called to see why no one called me back. Apparently, my nurse and doc are on vacation - another ped GI looked at his file and said he is having it done. It should have been done a long time ago based on his weight chart. I'm actually happy - its too hard to be the one to decide what to do. This way its decided and we'll go from there.

Amanda - Brayden is 32 1/2 inches and 24 pounds 4 ounces. His Gi says he looks okay if you only look at his current weight. But he goes from consistently 50-60th percentile from birth down to 13th six months ago...then he climbed back up to 50th and the last 4 months has gone straight down again to 19th.

They are gonna do a ph probe and scope.

Kim - They have only ever done an Upper GI (last month) and haven't even done bloodwork except for when he was hospitalized last Feb. He is having a full eval next week too for speech, physical and occupational therapy.

This is SOOOO tough
I am in the same ball park but my ds, but he will be 3 in October
Part of me wishes I opted for testing when he was younger, because I am sure it was be extremely tramatic!
I guess I would want to be sure what they are looking for....based on the endo results what changes would take place?
I see he is on a decent dose of losec, but does he have any room to move....i would try a med increase or even adding in zantac/pepcid to see if his pain is reflux related before additional testing
At least that is my game plan!
Zach's weight is good so we wouldn't consider surgery and he is already on 37.5mg prevacid...so what answers would we get from testing ( and he is dairy/soy free)

Good Luck and ler us know what you decide when the Gi is back from vacation

Cheryl, I hate guessing with medicine. If meds dont work after a good trial, I always think you should do an endoscopy and ph study to see if that is what you are really dealing with. I think you are doing the right thing by scoping him and doing the ph study.

Kim, there ARE other things that can be going on inside that appear to be reflux without it being reflux. Your son is on a VERY high dose, that is an overdose for an adult. I would consider testing before giving him any more meds. One thing that can be there is eosinophilic esophagitis. It mimics reflux but does not respond well to reflux treatment. It is not reflux, but from the outside you think it is. The treatment is very different, and the point that he already has a known milk and soy intolerance suggests it even more. There could be other proteins he is intolerant to if he has this condition. Just an FYI--something to think about.

Thanks Carla for the info
EE is something I plan to bring up to the Dr
I've heard about it on the site...but am not sure of the symptoms/treatments (something I plan to start looking into)

Thanks again

Kim,
The main symptoms of allergic eosinophilic esophagitis are chest pain that feels like heartburn but does not respond to acid blocking medications, vomiting, and food getting stuck in the esophagus (but not ususally until the inflammation has been there for a long time).

With this condition, the ingestion of certain proteins (or all proteins) and/or allergens in the environment trigger an inflammatory response in the esophagus. An eosinophil is a type of white blood cell, and when protein or an inhaled allergen enters the esophagus, eosinophils infiltrate the area causing the inflammation. Over time if left untreated, scar tissue can form in the esophagus, and the esophagus will thicken to the point that it cannot be used (food wont fit through)--but this is long term.

Eosinophilic conditions can occur anywhere in the GI tract, these symptoms are specific to eosinophils in the esophagus. They are normally found in the stomach and intestine but in smaller numbers. They are not supposed to be in the esophagus at all. A certain number in the esophagus indicates reflux esophagitis whereas a much higher number indicates this condition. It is something like 1-7 eosinophiuls per high power field is reflux esophagitis, 7-20 is allergies, and above 20 or 25 (I have seen conflicting reports on this) is eosinophilic esophagitis. Like I said, it is not normal to have ANY eosinophils in the esophagus--but the higher the number the worse it is.

The treatment is to remove the offending proteins. Usually, these do not show up as allergies on rast and skin tests. So if he seems intolerant to a lot of things but has normal allergy tests, it is even more indicative that this may be what you are dealing with. If there is an environmental factor, they use inhaled steroid vials as an oral treatment. (they have you swallow a vial of steroids used for inhaling).

Hope this helps! I know more about lower down if you wonder Cheryl or Kim!

BTW BOTH my kids are having biopsies for this condition--eosinophilic esophagitis/gastritis/enteritis--so I know a lot about it. So if you want to know more, ask away! Here are some links:

http://www.cincinnatichildrens.org/svc/alpha/e/eosinophilic/

http://www.apfed.org/

Cheryl I'm am so sorry your little guy is not doing well. This EE that Carla talks about is definatley worth checking into. Steph going to call Jaydens Gi an mention it to her. A hug for you. "HUG"

Cheryl I m really sorry that your little one isn't doing as good at the moment. I am glad that the Gi has made the decision for you on this, and then you won't be wonering if you are testing just cause of the insurance.

My ped made the decision for me and for that I am still glad cause I don't know if I would have done it all if she hadn't.

Good luck with the testing and let us know how he goes.