6yo daughter - management pre-diagnosis

My 6 year old daughter has been having issues on/off for years, and gastroenterologists have not scoped yet. By the time we'd get appointments (after weeks of waiting), the flare-up had subsided and blood work was OK. She doesn't have the genetic "marker", but has an aunt and grandmother with UC, and a half-sister with crohn's.

She is having another flare-up now, and I brought to a pediatrician, same practice as usual but different provider (actually, a teacher at the university, seemed really knowledgeable) who said that sometimes bloodwork isn't sufficient and the markers aren't reliable enough to say "no" based on that - that I should push to get scope/biopsy.

So questions are, does it help to have the diagnosis? I am scared to consider immune suppression or steroids at her age/size, so I don't know how much we can do with a firm diagnosis. I am working through diet logging, etc. Also, any tips for pain management without meds? Heating pads? Massage?

Welcome to the forum.
I suggest that you push for the scopes. Even if she is not in a flare, biopsies will show something. For some kids blood work does not show what's really going on. It does help to know if she has Crohn's or UC to manage the disease and avoid damage or even surgery. Untreated Crohn's leads to inflammation, blockage, surgery, anemia etc. etc. I understand you about being scared of the meds, but the damage this diseases cause when not under control, is more scary. I hope you find answers soon. We have a great parents forum you may want to visit. Best wishes.

araceli said:

Welcome to the forum.
I suggest that you push for the scopes. Even if she is not in a flare, biopsies will show something. For some kids blood work does not show what's really going on. It does help to know if she has Crohn's or UC to manage the disease and avoid damage or even surgery. Untreated Crohn's leads to inflammation, blockage, surgery, anemia etc. etc. I understand you about being scared of the meds, but the damage this diseases cause when not under control, is more scary. I hope you find answers soon. We have a great parents forum you may want to visit. Best wishes.

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Can I ask a silly question? I haven't pushed that hard in the past because I always have a fear that my daughter is either exaggerating symptoms or not articulating the level of pain well. The last two flares have had moments of unmistakable severe pain, but an hour later, she will say she feels better and another hour after that, she is hurting again. Is this normal? Is this what crohns is like for some people? When my other family members have flareups, it seems to be unrelenting for days or weeks. I don't know how to balance and evaluate her pain against her tendency to love attention. Also, which parents group? I found a few...

There really aren't any silly questions here.

Re: pain levels in kids. Believe me when I tell you that kids who have the disease at a very young age can become habituated to the pain the disease causes. I mean no disrespect to the adults who suffer with Crohn's but the kids just don't complain the same way. So what could be a 7 on the pain scale with us maybe doesn't register anything but a frown with the kids.

Conversely, when a kid suffers for awhile with Crohn's, they can develop various deficiencies which can make them more miserable and whiny.

It can go either way, or both.

My experience with our young daughter was that her labs looked very good. It wasn't until she had gone in for scopes that the GI sheepishly apologized saying, "She just looked so good" and "her labs weren't bad". Her colon was a mess but nobody had any clue. Truthfully she was diagnosed as constipated for half a year and on continuous laxatives when the real problem was Crohn's.

You aren't wrong for questioning her motives, but I think given your family history and the fact that the disease can present in some fairly asymptomatic ways with some kids - you should pursue it. There is actually a stool test now called fecal calprotectin which can give a very good indication of inflammation in the bowel. You could request that to start, and if it presents as positive then go to scopes?

There's a parent's group on this forum. Just go to the main page and scroll down. We hope to see you there. There's a really wonderful group of experienced parents.

Big hugs
DS was dx at age 7 and had near perfect labs at the time of his scope.
He had GI issues since birth but was dx with constipation prior to scoping.
I think it's important to know the why behind what may be going on.
Without meds things can be left to simmer in their own causing scar tissue.
That side severe abdominal pain( doubling over kind ) that lasts an hour or so them gets better can be a sign of intussception( bowel telescoping over itself)
The GI thought ds had this at one point.
Intussception is a direct to the ER medical emergency .
Not a doc just a mom but definitely talk. To your doctor .
Please let your ped /GI know the exact details so they can help you figure out what is going on with your Dd

Scopes /imaging ( mre pill cam ) and fecal caloprotectin tests are good places to start .

Thanks. We have a gi visit thursday, and I haven't felt like they listen very well in the past (new gi this time!), but I felt great about the pediatrician visit today, because he made it clear that either way, he wanted a phone call from me and a conversation so he could help us get answers. I also loved that he called the gi dr while I was in his office to make sure they knew he was involved, etc. And he asked them to move the appointment up; told them that she was not in a good state to be waiting. I finally feel like I have an ally. I have been pushing based on my mommy instincts and that can be exhausting.

ask for fecal calprotectine test first. This is a new good tool for screening IBD in the small and large bowel. Its not invasive, its just a stool test and result comes fast.

and yes symptoms can go on and off, every patient is different, but also we share similarities. For instance when I have pain its only prior to a bowel mouvement. Other people can have ongoing pain for days and hours non stop.it depends on the location and severity of disease.

have full blood test next time she is starting the flare. so Have a prescription ready for that. it is true inflammatory markers are not present in every patient. sometimes when the flare is mild or moderate, nothing will show ups in labs. for instance, my markers are expressive only when my flare is at a severe state.

In the mean time you could start a food diary and see if symptoms coincide with specific foods or ingredients.

Sorry for not answering sooner. I have a kid who was having tummy issues and joint pain. I did push a lot. Changed Doctors, went to to everything I could do thinking since my daughter had Crohn's, he had it too. Like your kid, my son had pain that went and go, not same symptoms as my daughter, clean labs, some not so clean biopsies, etc etc. At one point one Doctor treated me like one of those mothers who want to make their kid sick for attention. After that I did question my son's complaints as just to want attention. I took him to a pain management clinic and he was evaluated by pain Doctor, physical therapist and psychologist. His pain was real after all. I do not know if he will ever develop Crohn's but after many years of looking for answers we have a DX. Amplified Musculoskeletal Pain Syndrome. I suggest you look for the reason of her pains, they may be real or she may be exaggerating, either way, help from a professional will be needed. Just my opinion. Good luck. If you have more questions I will be happy to answer.