New but not yet diagnosed!

[buchanaj]

I was hoping I wouldn't need to join this forum but it's looking more and more like I'm going to have a kid joining the ranks of IBD sufferers.

Background . . . my DD is 13. Last year after she turned 12, she started to really fill out. She got as high as 120 at one point. However, starting over the summer, she started losing a lot of weight . . . . having horrific-smelling diarrhea . . . having stomachaches. At first, I just thought she was "thinning out" as she had gotten a little chubby over the previous year. When she continued to get thinner and the diarrhea continued, I decided to take her to the doctor and get some tests run. We recently go blood and stool sample tests back and the doctor indicated she feels its some sort of malabsorption . . . . caused by IBD.

Looking back, I believe she may have had a flare when she was around 10 as she went through similar symptoms to what she is experiencing now. She lot a lot of weight that time too but, before I got too concerned, it turned around and she started putting weight back on so I assumed it was just her normal growth pattern. I am beating myself up pretty bad for not recognizing this earlier.

I am making our first GI appointment today. I have cried all morning at work. I didn't want to be all upset at home as I figured that would just upset my DD so I saved it all for the office. My DH is kind of naïve in that he thinks we can just stop letting her have any junk food and it will go away. I wish. I would give anything to trade places with her right now.

Jennifer

 

[Farmwife]

Welcome but sad you had to find us.

My girl is 6 now but was dx at 3. It's been a tough road but it's been made easier by this forum.:kiss:
We can all understand the worries and stress that comes with being a parent to an ibd'er.
It will get easier but the road may be a bit bumpy every now and than.

May I ask what test were done and the results?

Do you know of a good children's hospital that treat ibd? Please ask if you don't. We have parents all over the county ( and world) that can give some great advice on hospitals.

 

[buchanaj]

So sorry you have a young one dealing with IBD. Diagnosed at 3! I can't imagine.

I'm just attaching the test results with identifying information removed.

We are being referred to the Pediatric Gastroenterologists at OU Physicans Pediatric Group in Tulsa, Oklahoma. Does anyone have any experience with them?

A few other points about my DD's case . . she's never really complained about any severe stomach pain and when she has it's typically up under her ribs or the lower left side of her abdomen. Her primary symptoms have been the horrific smelly diarrhea and weight loss. What's interesting is that when she was just a hair over 2 years old, she had a bought of really bad diarrhea, stomach ache, fever over about a month. Doctors ran all sorts of stool test/blood tests and couldn't figure out the cause. They ultimately did a barium enema to check for blockage. No blockage but about a week after that, the episode just mysteriously faded away. She's always had what we call "sour belly" but it came in waves . . . bad for a few months and then back to normal. Now I'm wondering if it's all related to what we are discovering now.

I am grateful for any feedback you can provide. I feel like I'm wandering in the dark and there's so much info out that, I don't know what is good and what is bad.

Jennifer

 

[Clash]

Don't let the mommy guilt get the best of you. None of us would've blown by overt symptoms and signs had we known what to look for. I go back often to times my son had weird symptoms that were easily explained away or resolved themselves and think should I have known? But honestly how would any of us had known? We don't have the benefit of medical knowledge in gastrointestinal illnesses. Of course, six months after dx and any one of us could best most researchers in quoting the latest studies or listing the newest meds, their study phase and how far down the pipeline they are. Not to mention any and every diet that may have the least benefit....don't even get us started on poo...consistency, texture, color Bristol scale number!

I haven't looked at your link you posted but I would also recommend a children's hospital. And if you haven't had this already have the docs order a fecal calprotectin stool test. It tests for inflammation in the bowels and is more specific than inflammatory blood markers like CRP or SED which show inflammation anywhere in the body. It doesn't specifically dx CD but can give the GI something to determine further testing going forward. Maybe your GP could order so it would be on hand for the first GI appt. Test can take two weeks to come back.

Good luck. I hope things turn out well and you have no need for this forum but if you do get an IBD dx this place is chock full of caring, compassionate people with a wealth of experience and knowledge that are quick to give everyone support, listen to vents and help you smile through the tough times!

 

[Jmrogers4]

Oh, the guilt! unfortunately, it's not until you have all the pieces that the puzzle is complete so try not to beat yourself up. My son had stomachaches nearly every morning for a year before diagnosis, never kept him home from school and once at school they were gone. We figured everything from lactose intolerance to stress and never really considered Crohn's even though his father has it.
It's just important to move forward and get answers, I hope it turns out to be something easily fixed but if you do have to join our ranks you could not ask for a better, more knowledgeable group of people.
As Clash says fecal calprotectin is a good one to inquire about but trust your instincts and keep pushing until you find answers.
Good luck and keep us posted

 

[crohnsinct]

Clash's words were perfect! Try not to be so hard on yourself...besides it sounds like you are trying to steal my award for Worst Mother on the Planet! Although stole it from Dustkat! O had no symptoms prior to dx except stalled weight gain and height. Otherwise, perfectly normal kid. Two years of slow swim times and a tad of anemia at every Ped appointment. I would mention the slow times and was told not to worry. Her first HUGE flare and admitted and in ICU becaue her organs were failing. Even the pediatrician missed it! It is not the first thing that come to mind.

Fast forward...second daughter chronic tummy issues. I mention her to ped and GI for three years...no, no, no just because you have one daughter with Crohn's doesn't mean your second has it as well. Even when GI agreed to see her it was a technicality and he ran a test to put it to bed. Yep! Crohn's. Only because of my previous experience did I know to push.

Take it a day at a time. Don't get ahead of yourself. There are MANY Gi syndromes, disorders and diseases. I am glad you are working with a GI now.

I second that Fecal calprotectin test. It is more sensitive than blood tests for a lot of people and does distinguish organic disease from functional (think IBS) disease.

As for life with Crohn's....once you find the right treatment (which could take a while...6 months with my first, a year and counting with my second) they can live a very full life. My older daughter swims competitively with a club swim team and runs all year for high school teams. She has been in remission for 3 1/2 years and is looking at colleges clear across the country. She is happily skipping through like and doesn't give her Crohn's a second thought.

Good luck at your appointment. ANY question ANY time pop on here. Someone is bound to be on and reading.

 

[CarolinAlaska]

I don't envy you the waiting. I hope they find something easily fixable. Sorry she's been so sick.

 

[CrohnsKidMom]

So sorry you've had to join us! There could be a number of explainations for your daughter's symptoms, but yes, IBD could be one of them. Unfortunately, symptoms vary patient to patient, so it can sometimes be hard to diagnose. Usually you are looking at bloodwork results, a MRE, physical exam, and scopes. My son was dx'd at age 8, with CD in his small intestine. He had malabsorption issues too, which makes sense as absorption of nutrients takes place in the small intestine. His symptoms came on suddenly and were pretty textbook, but I can think of things which may have been Crohn's related from the time he was 2 yrs old. Even the dr wrote them off as just little childhood illnesses and issues. So don't feel guilty about the past. It's not your fault, and you are seeking treatment now that you know there is something going on. It's good to read up on the dx all you can, but know when to take a break. It can get overwhelming. And remember too, that much of what you read online are worst case scenarios, and not necessarily the norm. And pop by the forum often. It is a great place for info and support.

 

[crohnsinct]

This is a good thread to read. It is buried so you don't come across it easily and many forget to post there and post to their kids thread but have a read.

Success Stories!

http://www.crohnsforum.com/showthread.php?t=27079