15 year old daughter undiagnosed

[srhoads]

Hello,
I am desperately seeking answers for my 15 yr old daughter. Her severe abdominal pain and stomach noises led us to her Dr who recommended having her gallbladder removed after an ultrasound and upper GI revealed gallstones. She progressively got worse since the surgery. She has been to the ER six times in the last month for severe abdomnal pain, throwing up bile, and one visit included a small bowel obstruction with a NG tube to remove it. She has been to a GI Dr who has run several tests, including Upper GI, CT scan, ultrasounds, EDG scope, and in future plans..a colonoscopy and prometheus blood panel test. I'm so frustrated that they cannot tell me what is wrong with her! She has been sticking to a bland diet and yet still has flare ups. She has lost over 15 lbs because she refuses to eat at times when she's having a lot of pain. We live in Houston and since we were so fed up with her GI Dr not treating her, just throwing narcotics at us, we took her to the ER at Tx Children's. They had no answer, but hopefully we will be seeing a GI Dr from TX Children's next week. I was hoping I could get some answers here on what she should be eating, what we need to do next.. any help is appreciated!

 

[DustyKat]

Hi srhoads and :welcome:

Unfortunately for many a diagnosis can take quite some to obtain. My own daughter went undiagnosed for 18 months and it surely is a frustrating and heartbreaking time.

Is she having the colonoscopy and prometheus test soon?

I hope the colonoscopy is able to provide with you some solid answers but if it doesn't don't be disillusioned as it still leaves most of the small bowel untouched but this can be imaged in other ways.

Please have a look through the Diet, Fitness and Supplement Forum. Generally at this point sticking to a bland or low residue diet is better as it is kinder to the bowel. If your daughter does have Crohn's then you may like to look into Enteral Nutrition (EN). It isn't commonly used in the US as a first line of treatment but is widely used elsewhere.

Looking at the IBD aspect of things then your daughters symptoms seem to indicate that it would be higher than the large bowel and perhaps is located in the ileum. There are many extra intestinal manifestations of IBD. Have a look at the thread at the start of this forum and see if anything looks familiar. There can be gallbladder, liver and/or pancreatic problems that result from IBD and they can appear before the intestinal symptoms do.

Have other blood tests been done like inflammatory markers, CRP and ESR?

What about stools tests that look for inflammation like faecal calprotectin?

You are doing the right thing in seeking further opinions. Hopefully you don't need to shop around too much but continue to do so until you get the answers you need to bring your daughter relief.

One more thing, we have a Parent's Forum here so please pop by and have a look around cause we would love to see you there. We also have an undiagnosed kids thread stickied near the top of that forum, so again have a look at others experiences and see if you see any familiar things.

Good luck and best wishes!

Dusty. xxx

 

[StarGirrrrl]

Hi srhoads, sorry to hear what you and your daughter are going through

We are not really geared up for kids here, so i'm moving you over to the Parents of Kids w/IBD forum for some better help and support.

 

[imaboveitall]

Hi there, Dusty gave you good direction and all I can add to it is that disease located in the small bowel, not visible via scopes, can be revealed via capsule endoscopy. This is what Violet had, it's quite an easy test, they just swallow the pillcamera and wear a beltlike device for 8hrs while actual photos of the entire esophagus, stomach and small bowel are taken by the device and then read by the doc. Ours gave us an actual CD of the photos.
This is the test that showed Violet's disease, her scopes were NORMAL.

It sounds though like your GI has done the usual tests and is planning a colonoscopy which is what I'd want done and what V's doc did additional to the cap endo, so you should get some solid answers.

V is 14 y/o so I can relate to your situation.
Ask anything you need to...:heart: Many smart parents here and support galore.

 

[Mom2oneboy]

Welcome! I don't have any answers for you. I'm new to all this myself and can totally relate to the feelings you are having. My 10 year old was diagnosed with Crohn's last month. I have been one stressed out momma!! Hang in there and keep charging forward to get answers for your daughter. We go to a children's hospital here locally and have been very happy. They are used to dealing with kids so it's better in my opinion.

LOTS of knowledge and support on this board. You'll learn more here than you will from the doctors!

Blessings,
Shelley

 

[Catherine]

Welcome, my 16 year daughter was dx with crohn's this January, after severe weight loss 26lb in 3 months. We lot the scope done at time our time appointment was due. By ringing up each week advising the GI that she had losted more weight. See if you can be put on a cancellation listing. Sarah lowest weight was 96lb, she is 5ft 8in.

 

[Dexky]

Welcome SR! I hope you get solid answers for your girl! There's loads of info and support here. Good luck!!

 

[kimmidwife]

Hi Welcome, Sorry you had to find us but glad you did! I wanted to pipe in and say definitely find out about the capsule endoscopy as V's Mom said it can see a lot of places in the gut that some of the other tests cannot. Also ask your doctor about enteral nutrition it might be a way to give her nutrition that won't hurt her when she is in pain.