HealingWell
Search Close Search
☰

Daughter may have Crohn's- Would like advice

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/10/2014 8:52 PM (GMT 0)
Hi All- I am new here and have read through many posts. Highly impressed with the knowledge and thoughtfulness of the members. I have a 13 year-old daughter who is mostly healthy, but small for her age (4'9", 63 lbs.). Long story short a Peds GI tested her, found all normal blood work, no celiacs, no c diff or other bacterial infections, but her calprotectin is 380. She often has a little stomach pain and hard stools. She had trouble with anal fissures in the past. She is getting a colonoscopy in 2 weeks. She is energetic and mostly feels fine.

Questions:
1) Do these symptoms sound indicative of Crohn's?
2) If she does have Crohn's, what would be normal drugs to start out with? I want to avoid Remicade if we can to start.
3) Did you get 2nd opinions of your colonoscopy slides for diagnosis?
4) Has anyone tried Fecal Matter Transplantation?

Thanks All in advance!
Posted 4/10/2014 9:25 PM (GMT 0)
1)I don't know that all of her symptoms sound indicative of Crohn's. the most telling for you will be the colonoscopy where they actually look at her intestines and can see what is going on in there.

2) every doctor is different. Some are conservative and take a conservative approach with drugs, starting with 5-Asa's. Other prefer to start more aggressively in the hopes that hitting it hard and fast will do more to keep the disease under control. It sounds like unless your daughters guts look like a train wreck, that based on the symptoms you've listed remicade wouldn't really be a starting place for her.

3) I was dx'd at 16 years old and I did not get a second opinion because the childrens hospital I was seen at was very reputable and my GI was very knowledgeable. My parents trusted his diagnosis.

4) have not tried it, but someone on the board here is getting ready to do it. You should pop over to the Ulcerative Colitis board and look for the post there from UCHater (I think) regarding his recent FMT. He has gone into remission and it was very successful for him. There is also a search bar at the top of the page and if you search fecal transplant you can see all the posts that members on these boards have put up.

I'm sorry your daughter is having a hard time. I hope that you can get an accurate diagnosis and that she can get to feeling better soon! She's too young to go through this kind of trouble. I know how tough it is. Hang in there!
Posted 4/10/2014 9:31 PM (GMT 0)
Hi Bareket, welcome to the forum.

Has your daughter started puberty? If she is underweight and short for her age, and hasn't started puberty, I'm glad your GI is thinking about Crohn's. Does your daughter have a normal appetite? Has she always been at the low end of the growth curve?

What test was done to check for celiac? Will she have an upper endoscopy as well as a colonoscopy? Has she had any imaging studies done of her digestive tract?

Have you tried to soften her stools with changing her diet or adding stool softener?

As for your questions, there are two schools of thought on treating Crohn's. Many DRs start with the big guns for kids because they want to maintain normal growth and avoid steroids. Other DRs want to minimize risk of side effects and will start with mesalamines. There have been lots of studies done on the various meds available to treat Crohn's and the best ones show that biologics are the most effective at inducing remission and maintaining it.

I have never asked for a 2nd opinion on any biopsy.

The use of fecal matter transplant has been discussed here in the context of treating c-diff. On the UC forum you can find some people who have used it for treating their IBD.
Posted 4/10/2014 10:26 PM (GMT 0)
1) Possibly. Children do appear to present differently to adults, with fewer GI symptoms and stunted growth, but I'm no expert on paediatric Crohn's.
2) I'd rather a child of mine took anything but Prednisone, but unless it's severe your daughter is unlikely to be put on Remicade straight away. 5-ASAs are the traditional starting point, especially for colonic disease. For an active flare-up, I'd consider enteral nutrition.
3) Never
4) No. FMT isn't a proven treatment for Crohn's. Even for UC, it's doubtful. It's mostly used for treating reoccuring c. diff infections.
Posted 4/10/2014 10:40 PM (GMT 0)
Hi All- Thank you for your quick replies!

On the puberty front, no, she shows no signs of puberty. But this is a usual case for my family. My husband and I are normal heights (5'11 & 5'5""), but all of kids are small and late to develop. My oldest daughter who is almost 15, was 4'10" in November. We started her on growth hormones, and she is now over 5' (she grew 4 inches in 2 months!). Her body tested to be quite deficient in growth hormones and clearly it was starved for them. She also has few signs of puberty and no period yet. I thought this was the case with my 13 year old, but the endocrinologist was worried about her weight and referred us to the peds GI. Thus, where we are now. My guess is we might have a combination of Crohn's/colitis and growth hormone deficiency with my 13 year old. I will know about the IBD part after the colonoscopy.

Thank you for the answers on the other pieces.... good information to store for my visit(s) with the doctors. I live near NYC in northern NJ, so I have no shortage of good doctors I can consult with. I may get a second opinion on the slides because I may want to switch doctors. I have not been overly impressed with the one I am using now.
Posted 4/10/2014 10:45 PM (GMT 0)
Oh, and PS on the other questions. She has had 2 celiac's blood tests (she has 3 cousins with celiacs). Both came back negative so it is highly unlikely that she has celiac's. Apparently this test is very sensitive and is prone to false positives, but not false negatives.

I don't know about the upper endoscopy. That wasn't mentioned on the paperwork- but thank you for pinging on this- now I know to ask about it.

She had a mesenteric vascular ultrasound done 1.5 years ago, and this showed perfectly healthy veins.... or whatever this tests for, but no other imaging. I asked a radiologist friend and he said this is not a good marker for Crohn's/IBD, so this test didn't net much in this area.

One more factoid... we're Ashkenazy Jewish, perfect candidates for IBD....
Posted 4/10/2014 10:49 PM (GMT 0)
3rd quick post (you all asked a lot of good questions!). She has tested negative for lactose intolerance at the GI's with a breath test, she has been on miralax for 2 years to soften her stools. Hope I answered them all :)
✚ New Topic ✚ Reply