2nd daughter with unexplained symptoms

[Hope345]

I have a 15 year old daughter with Crohns disease or UC. Next month they are doing another colonoscopy to determine which one.

My other daughter has been having GI symptoms as well, but not similar to daughter with Crohns.

Several years ago she was having migraines. We have those under control but then she started to get major acid in her stomach. She is currently on Prilosec but suffers with major nausea, upset stomach, extreme burping, tiredness, and now gets headaches almost everyday. We have done blood tests for iron deficiency, chem screen, sed rate, tested for ciliac disease: all good. We did a GI xray work-up which showed no inflammation. We are going to do a H. Pylori stool test tomorrow.

The doctors have said she doesnt have acid reflux, no sign of crohns, and put her in the IBS category. She eats very healthy.

If the h. pylori comes back negative, our next step may be a endoscopy.

please give advice. She has not felt well for a few years and we need to get her well.

thank you

 

[Johnnysmom]

I would also request a fecal calprotectin. It is a really easy stool test and it shows inflammation in the digestive tract. Anything 50 or below is normal. Someone with controlled crohn's could be in the 300's. But, 1000's can be a flare. Your GI might find it useful.

When we lived in Michigan the test wasn't used in our GI's practice. Now that we live in Cincinnati (much bigger hospital) the GI's use the test all the time.

Let us know how she is doing. ((((Hugs))))

 

[Hope345]

I will certainly consider that one. the problem is our insurance does not pay for it. We have had 3 done on our other daughter and owed $600.00. If I knew it would be the answer, I would do it however.

thank you....

 

[Johnnysmom]

I completely understand. For some reason our insurance keeps rejecting paying for them too. They were only willing to pay for 1 every 6 months. My husband called the GI office and the insurance company. They did finally agree to pay for them. It requires a phone call every time though.

That stinks, they are very helpful but not a game changer so I understand your position. I hope some how you can get them to agree to cover it. Our GI did say that the insurance companies will come along, since it is now such an inexpensive (comparatively speaking), non-invasive, and widely used tool. I am not sure how Obama care might change that though.

 

[Cat-a-Tonic]

Hi Hope345, I see you had posted this thread in the "Ask the Experts" section. That section of the forum is for really broad, general questions rather than more specific ones like this one, so I've moved your post here to the Parents section. I see you've already gotten a few responses and hopefully you'll get more in here.

 

[Hope345]

Johnysmom,

I sent out extensive information from everywhere I could think of to our insurance company and fought it for months to no avail. They were unreasonable because the GI that works for the company and gives his input says that it is not needed.... well, neither is a CBC, to continue treatment. hard to understand!!!

We just added a culture to the h. pylori stool testing. She has all of the symptoms that fit almost perfectly with a ulcer causing bacteria that she reacts to. Hopefully they will treat her with 2 antibiotics and she will have a normal life again.

 

[my little penguin]

I thought a scope was the gold std for h pylori
has she ever had an upper and lower scope?
How about a neuro for the migraines/headaches?
there are meds daily that they can give to eliminate those.

 

[kimmidwife]

I second MLP. Ask to get her a colonoscopy. Our GI doctor says that is the gold standard to rule out Crohn's even if labs are normal.