Help I am ready to pull my hair out!

[nikki112680]

I need advice. I have an 8 year old who has had on and off now for almost a year stomach pains at least once a month, which is usually accompanied by loose stools with the occasional watery stools, I have been going back and forth to a GI doctor here and he did the blood work which came back fine, and he wanted to see her again next Tuesday the 28th however, in between the labs and the next appointment she had another "episode" and this started on a Wednesday watery stools all day no other symptoms besides the horrible pains she says she feels like someone is punching her repeatedly in the stomach and by stomach she points across the belly button so pretty much left, right and middle. So this continued Thursday and then Friday she had blood in her stool only once though so I am thinking maybe it was from the force of what came out, Friday evening she was in bad shape, fever pain the whole nine yards. Saturday after she had gone to the bathroom about 12 times I ended up bringing her to the ER to make sure she was not dehydrated, so of course they tell me it is viral which they always do when we occasionally end up there for these pains. So I explained that this has been an ongoing for almost a year and it happens at least once a month and then seems to get better and happens again, it's always the same loose stools and punching type pain. So to make a long story short LOL She had an endoscopy and colonoscopy today and they see nothing, they did take samples to examine as well but I am ready to pull my hair out with this whole thing, could it be crohn's? but hiding in a different location? could this be IBS but severe pains with it than what most people go through?? I am so confused and feel like I am hitting walls every way we go I just want to be able to help my daughter when these episodes occur and no matter what I try nothing works so my main goal is of course to make her comfortable but so far over the past months nothing works to ease her pain. If anyone has any insight or advice I am all ears. :ybatty:

 

[Catherine]

Welcome to forum, sorry you had find your way here.

I would try posting on the parents forum. There are lot of great parents here.
Yes there could be problems further up that a colonscopy can't see.

Do yo know what blood tests they did? And the results.

 

[user 80599]

Hi Nikki, so sorry to hear of your daughters problems

We don't really deal with children on this section, so I am going to move this over to the excellent Parents of Kids with IBD forum, which sadly includes other undiagnosed kids.

 

[dannysmom]

Hi ... I am sorry your daughter is suffering. Crohn's can be in the small intestine and this would not show up on endoscopy and colonoscopy as only the top and bottom of the small intestine is examined. There is a pillcam test that sometimes help patients get dx if they have lesions in their small intestine. Do you know what blood work was done? This is also useful. Has she had any stool testing (ie fecal calprotectin) to look for inflammation? Was the blood bright red? If so then your guess may be correct. I know people diagnosed w/ IBS that do have severe abdominal pain at times. My son is also undiagnosed so I understand your frustration. Good luck!!

 

[Sascot]

So sorry to hear about your daughter. My daughter is 9 and in pain alot of the time - still undiagnosed, so I sympathise! It is definately worth getting the faecal calprotectin done. It is the most common indicator or inflammation in the bowels - our docs use it (it is how my son started his journey to diagnosing Crohn's). At least it is a painless test which is always great - it does take a few weeks to come back, so may be worth asking soon.
The colonoscopy/endoscopy can only look so far up or down, so there is definately an area that they will not be able to see. My son had a barium meal done to check the bit inbetween. His pain was across the belly button as well - used to be doubled over for a week to two weeks. Used to be so frustrating when they used to send me home with him in pain. Even had one GP tell me "sometimes you just have to live with a sore stomach"!!
I hope they get it sorted soon so she can feel better

 

[jmckinley]

So sorry to hear that your daughter is having problems. My son has Crohn's, but I have IBS. It can be very painful sometimes. Stress and some foods trigger it for me. There is a medicine called Bentyl that works very well to calm the cramps. Also, keep a food/event diary to see if there is a food that she is eating or a stressful event happening prior to her getting sick. For me, dairy is evil! Also try some probiotics/digestive enzymes.

I would still pursue the bloodwork and stool tests for inflammation and the pill cam to make sure it isn't Crohn's.

 

[nikki112680]

Thank you all for commenting, at least I know I am not alone in all of this. As for the blood tests, I am not 100% sure what was checked I know they were looking for inflammation which was negative, as for stool samples she did have that checked when she had the last episode a week and a half ago and it was being tested for c-diff and parasites but not for blood or inflammation. What has me so frustrated is the way doctors can just pass it off like oh well, we don't see anything blood work is normal so maybe give her more fiber?????? LOL I have to laugh otherwise I will probably lose my mind. Once the pathology comes back from the endoscopy and colonoscopy I will be pushing for a few more tests to rule out Crohn's as I know from reading posts here and other information on medical sites that it can be hiding in the small intestine. This is just very frustrating as I am sure you all know from your own experiences. If her GI doc now doesn't want to search further I will be calling another one. I know left untreated there are complications and I definitely don't want that to happen to her if it can be avoided by just checking a little further into it. And in the event that it is not Crohn's and it is IBS at least I would be able to feel more comfortable knowing that instead of wondering what it could be and how to handle it when the episodes occur.

 

[David]

Welcome to the community! I'm so sorry to hear about your little one

DO NOT let them diagnose her with IBS without at least a fecal calprotectin like Sascot mentioned and if it was my kid, I'd request a fecal lactoferrin as well just to cover all the bases there. They're cheap and relatively easy tests and can tell a lot.

I'd also be interested in testing for Celiac, lactose intolerance, and other allergies/sensitivities.

Did they test for parasites? That it's a sort of cycle makes me wonder about that as well.

All my best to you and your family.

 

[Farmwife]

Sorry to hear about your girl.
My little farm girl/princess is 3. She also is undiagnost.
I NOT about to pull my hair out but.:shifty:...I'm about to do it to all the DOCTORS IN HER LIFE!:ywow:
You've been given great advice already. I hope you find some answers.
Feel free to stay around. If they haven't kicked me out, they won't you.

Farmwife

 

[my little penguin]

WE have all been there-
My Ds had normal blood tests/ Ct etc...
The only thing that helped us was biopsies otherwise we would still be un dx.

Hope you find answers soon- if not just keep trying.

 

[Thermo]

There is some serious good advice in this thread, I wish I had this 20 years ago!

 

[Mehita]

I second Sascot & David's suggestion on testing for fecal calprotectin as well as celiac, food allergies, and parasites. Be sure to get copies of all the lab work so you can do your own research as well.

Whatever you do, don't give up. If you're not getting answers, get a second opinion. Our first GI doc kept ignoring the inflammatory markers and said our son was fine. Well, on the OUTSIDE he was fine. Inside he was a mess with a 6" stricture! Keep pushing, keep asking questions... and keep us posted.

 

[DustyKat]

Hi nikki and :welcome:

I'm sorry for the late reply. You have been given fab advice regarding the additional testing to pursue.

The only thing I will add is, if you aren't already doing so it is often a very good idea to start a diary of what your daughter is experiencing. Here a link to the wiki that has suggestions as to what you might like to include...

http://www.crohnsforum.com/wiki/Diary-Inclusions

...I found tracking symptoms was very useful when my daughter was undiagnosed and it has the added benefit of making it difficult for doctors to refute what is in front of them in black and white.

Just for your own information so you don't get put off by pooh poohing doctors :lol:. My daughter repeatedly returned negative after negative test, bloods and imaging, and also had cyclic symptoms. They were different to your daughter's but were so predictable, time wise, when I started tracking them it was uncanny!

Good luck hun. I hope you are able to get solid answers soon, whatever they may be, and your daughter finds long and lasting relief, bless her. :hug:

Dusty. xxx

 

[nikki112680]

Hi All!! Thank you all so very much for all the advice and suggestions. It really is appreciated. I finally went for her follow up today and the biopsies from the colon were negative and they did find a little damage in the esophagus from reflux but that is it. They said that they don't believe the pain in the intestine area is from that but it is a possibility and they want me to try her on the medicine for 3 months. In the event she continues with the pain, they want me to do dairy free for a week and see what happens and if it still continues they think it may be IBS so I guess we have to wait it out. In the meantime her pain has gone down like it usually does and I am hoping it does not return. I know IBS is a catchall for not knowing what the issue really is. Ugh maybe it is time for a second opinion.

 

[Sascot]

Well that must be some relief and some frustration. At least you know some of the tests showed nothing and hopefully the new med will help. It would be great it that was all it was. I remember when I was having trouble with my daughter a few years ago we were told to do dairy free - but we were told that it had to be at least a month for any actual benefit to show. Just thought if you did try it, it might be worth doing it longer than a week - just to make sure. Good luck with it all

 

[Farmwife]

I'm happy for the good test results but I feel your pain for not getting answers still.
I hope she will get better on the meds.

 

[dannysmom]

Thanks for the update. What medication did the doctor recommend?

 

[David]

I'd still demand a fecal calprotectin and fecal lactoferrin test before I accepted an IBS diagnosis. They're simple and cheap and are pretty good for determining if there is intestinal inflammation that would not be present with IBS.