Sick Daughter - advice needed

Hi all. My eldest Daughter, who is just about to turn 10, has had ongoing problems for just over 2 years now. It involves excruitiating stomach pain in the lower right quadrant. That is the main symptom. Often there is no fever but there has been one occasionally. She has been to the hospital for this numerous times. Every time they have ruled out appendicitis. Last time we were there (about a month or so ago), I mentioned the possibility of a bowel problem as I have noticed that lately with the pain she also has a lot of wind. I did inform them that I have Crohn's to which they said she definitely doesn't have Crohn's. I was actually suspecting irritable bowel, but because I'm her Mother and not a medical professional I was treated like I'm an idiot.

She has had numerous ultrasounds which have only ever showed some fluid in her bowel loops (or what they could see of her bowel loops). Her last lot of blood tests were normal bar a slightly elevated crp (was 11.5). She rarely gets diarrhea, more often than not she seems to be constipated. Or just has trouble getting her poo out. The pain is what I would discribe as colicky, coming in waves rather than the constant sharp pain you get with appendicitis.

My GP seems to think it's a bowel issue too and referred her to a paed, but we've been waiting to see her for over a month now and can't see her till the 24th Sept, so I've been trying to manage the pain with panadol and buscopan until then (which doesn't really help her at all). I have spoken to my Specialist about it, to see what he thinks (and to see if I could get some advice), and he cannot understand how they could rule out Crohn's with out actually doing any "real" tests.

I feel helpless and it breaks my heart when she's in so much pain that she can't even eat anything (not that she's going to starve to death - she's not exactly a small girl - she's very tall and stocky for her age). I guess my question for those out there that have kids with IBD (or who were themselves diagnosed at a young age) is, what were your child's symptoms and what tests did they have done to make a diagnosis? I can't continue letting her just cope with the pain.

Thanks for reading all this.
Claudine

Thanks Kellie. No, the stress isn't good for me especially considering I've been flaring since April! My specialist is through a Hospital and they don't see kids there, but her appointment is through a childrens's hospital so hopefully they will do something. I will be pushing for some answers though, as I have illeo-colic crohn's so I get the pain down there and know what she's going through. I actually asked them if the pain could be inflammation in her illeum and they looked at me like I was mad!

I was diagnosed at 14, but remember having symptoms beginning in 6th grade (I was around 12, I think). Anyway, I also was tall and stocky, weighing in at 140 lbs and 5'7 at 13. I always looked healthy, but my mom couldn't understand why I would be hungry, sit down to dinner and only be able to manage a couple bites before the pain kicked in, looking at the food would make me nauseaus, and I would lose my appetite. Gradually I went down to 115 lbs, and the doctors kept telling her there was nothing wrong with me, that it was all in my head, that I had anerexia, etc. Finally, the Dr put me in the hospital to run some tests (I think he just got tired of my mom b*tching) did an upper and lower GI, and that was when they discovered I had crohn's. They sent me to a larger teaching hospital to an actual GI, who did the colonoscopy.

Just keep pushing them for answers. I know this is scary, for both of you. Because of your history, you know in your gut that there is more to this. If she goes in to the hospital again, insist on seeing the GI on call. They will be more apt to listen to your history and run the appropriate tests. Good luck to both of you!

My daughter also had very bad stomach pains, lost ton of weight, troouble pooing, and her vitimin levels were all off. With my history of UC, off we went to my city doctor, whom ran every test on her thinking it was Crohns. Turned out she was lactose intolerance and now as long as she stays away from dairy or takes the pills she is ok. She also has excess stomach acid and burbs alot, but does not take anything for that. While I am glad that that was all it was, because of my history she had to undergo all those lovely wonderful tests. It's really a shame that our children have to go thru all this.

Thanks to everyone for your replies and support, this is why i love this place so much!

I will look in to lactose intolerance. That was one of my original diagnoses, and I think I got diagnosed with that around 4 times even though I told them I'd done the whole dairy elimination thing and it didn't help! She has been tested for Celiac but that came back negative. I constantly watch what she eats to see if anything affects her more, but the only thing I can seem to see is that high fibre foods upset her, which is the same as me (hence my concern!).

Thanks and I will keep you updated on our progress.

I didn't read the whole thread. Has anyone suggested a food diary? Perhaps she has problems with wheat or something else?

Hi Claudine,

I too have a daughter that starting showing symptoms at about 10yrs of age. I think you are getting some very good advise here. There are two very important things that you need to be very proactive about. 

First of all, you have to find a very capable Pediatric GI. You also have to make sure that their team of nurses and staff are very caring. 

Perhaps you can start asking around through friends, or nurses or hospital staff that you might be aquainted with. Even the internet Dr. ratings might help.

I'm sure that things will start improving once you get someone you can trust to care for your daughter.

The first things are going to be a Colonoscopy, endoscopy, and SBFT. Also, standard bloodwork for inflammation markers.

Good luck, hopefully you get some answers soon.

Tom.