6yo daughter - management pre-diagnosis

[trinity1913]

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?

 

[araceli]

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.

 

[trinity1913]

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.

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...

 

[Pilgrim]

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.

 

[Mr chicken]

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 .

 

[trinity1913]

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.

 

[Lady Organic]

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.

 

[crohnsinct]

Hi there and welcome although I am sorry you had to find us.

My daughter is another who took three years to get a dx. We were pushed off with chronic constipation even though her older sister has Crohns. Surprisingly she was dx'd at a time when she was not complaining at all. Our GI's theory is she just got used to the pain and since docs basically ignored her she just stopped complaining. You just never know with kids.

She also had normal blood tests.

Second requesting a fecal calprotectin test. It is specific for intestinal inflammation. Many people disease but normal bloods will show inflammation with this test (although it isn't totally fool proof). An elevated FC can be the result of a few different things so not definitive of IBD but will move you to scopes to get a more firm dx.

Good luck at your appointment!

 

[CrohnsKidMom]

Welcome to the forum, but sorry to hear your daughter is ill. I definitely think scopes are warranted too. The biopsies should provide you with more solid answers. My son was 8yrs old at dx, and had constant abdominal pain pre-dx. It always increased after eating however. My son was fairly easily diagnosed as his symptoms were pretty textbook, but that is not always the case. Symptoms vary case by case. Trust your mummy's intuition and keep pushing for the scopes and other tests previously mentioned. I hope your girl gets on the road to good health soon. Take care!

 

[trinity1913]

Thanks for the information from all of you. I will definitely ask about the fc test at the doctor visit, but my husband and I decided last night we were going to go ahead and request a scope if the doctor didn't push for it.

Any advice on how to manage the pain? I am keeping a food diary and she is eating "safe" foods, and I have been religiously watching every bite that goes into her mouth, but she still has pain. When her chest and throat hurt I have been giving tums like it is heartburn, but not often and no other meds. It is awful to have your baby in real pain and be unable to fix.

 

[Farmwife]

Hi another mom to a 6 year old. Fun age, isn't? maybe that's why I'm so tired. Lol

Grace's road to dx took awhile also. She never showed it in her blood and stool test. Ever test came back perfect. So frustrating because she was in so much pain but in front of doctors she would smile and say she's fine. Like some others have said, she was use to the pain and learned to live around it.:frown:
Of course it made me feel like the doctors thought I was nuts but when they scoped her and we get the results back it showed a very different picture.
No matter what it is, she needs answers!
My Grace also had pain of and on. As time went on the pains came closer together and stayed longer.
Remember the doctors work for you....... not the other way around! If your not happy or understanding why they are saying this or that make them explain it again until you agree or disagree. They ( doctors) need you to communicate your feelings! If the GI doesn't agree or his/ her personality doesn't match what you want........ find different GI!

Please keep us posted.:ysmile:

 

[lookame]

Hi! I'm sorry you have to go through this. It's always tough.

First off I am 28 yrs old, diagnosed at age 22 but had symptoms in high school. I have moderate to severe crohns colitis (crohns disease located in my colon, rectum and anus). I'll speak for my expirience first. My pain is linked to where the stool is at. I feel the most pain when I have to use the bathroom but once I've used the bathroom I feel much better(although sometimes I still feel queasy or like I haven't emptied my bowels fully). I am on meds right now so I have the most symptoms in the morning with some random stomach cramps/diarrhea throughout the day (again my cramps come and go as they please). I usually rate my cramps/aches and pains around a 5. After awhile you get used to the pain and your rating goes down as time goes on. I know things are bad when my left side feels heavy and swollen but it's hard to describe the feeling (it's not painful it just feels weird) and usually that is accompanied with a fever. My bloods always showed anemia but my sed rate and everything else are usually normal. My symptoms started off as arthritic knees, random stomach aches, very thin(although I did eat), mucousy stools, and later development around the age of 14. The tall tale symptoms came later when I started becoming severely anemic and dehydrated, nocturnal bm, painful bm, urgency, and bloody diarrhea.

My son on the other hand (he doesn't have IBD, he has eosinophilic esophagitis with possible early IBD) has had issues since he was a month old. He had bloody diapers which was written off as inability to digest milk protiens. When he started solids he didn't actually have any solid bm until around the age of 3, he's had issues gaining weight, blood in his stools, painful bm, nocturnal bm and random vometting. His bloods always show perfectly normal, his FC was slightly elevated. He was referred to a pedi GI who only did scopes based on family history and his slightly elevated fecal calproctine result (if either was presented by itself he would have diagnosed IBS). His scopes appeared clear but on a cellular level something was going on.

A lot of diseases can have the same symptoms as IBD. Also it can take awhile for a clear and accurate diagnosis, you may receive one diagnosis (some here have had edig diagnosis like my son to later have it changed, some have also had an IBD diagnosis to have it changed).

As for the meds. I understand the hesitation, immune suppression and biologics can be rough on the system but honestly letting inflammation simmer is much worse. Inflammation can cause strictures, scar tissue ect and much of that isnt reversable.

Pain management I like to take hot bubble baths with Epsom salt, drink ginger hot tea (peppermint and lavander are also great) and add a good amount of honey, and lastly I like a good heating pad. If I'm feeling nauseated I like to suck on peppermints and I'll also rub my belly. To help my son I have him lay down in bed and rub his back.

 

[trinity1913]

Thanks for the tips! I will definitely try some out with her. I remembered my mom used to do peppermint oil in warm water when I had tummy aches so I have been meaning to try that

 

[Sascot]

Good luck with pushing for scopes. I am also trying to find answers for my daughter (12) and gave finally got the doc to order scopes after 8 months. My son has Crohns and his only symptom was tummy pain that lasted a week then went away completely until the next week of pain. The FC was the only test that showed anything for him - bloods were always fine. My daughter has normal bloods and FC but daily tummy pain. They are scoping because if her brother's history. Hope you get answers

 

[Mehita]

If you end up drawing labs, I'd ask for a Celiac panel too, just to rule it out.

I just mentioned in another thread how as parents it's sometimes hard to see how sick our kiddos really are since we live with them, especially subtle changes. As a stranger reading your story, it's very apparent to me that something is going on with your daughter. Kids shouldn't be in pain and if they are you need to find out why. So, like the others have suggested, keep pushing until you get answers. Fecal calprotectin is non-invasive (though no fun for mom!) and can get you started. Scopes could be very helpful and if you end up there, pop back in here for all the tips and tricks.

As for the meds, if she does have IBD, they are far less scary than untreated disease. My son was untreated and then undertreated and paid the price with the loss of ten inches of his small intestine at age 12. Again, come on back and we'll help talk you through it all.

Good luck, Thursday!

 

[Pilgrim]

I saw these adorable stuffed animals that had these beads inside which you put in the microwave and use as the toy as a heating pad.

Of course as always the name escapes me...

 

[trinity1913]

We had an awful night with joint pain last night. I did massage, but was considering trying to do essential oils to see if it would work better. Her skin gets very irritated easily, so I would probably use a diffuser to inhale instead of applying to the skin. Any suggestions on what to try?

 

[Mr chicken]

Snuggables are the heated stuffed animals

If her joints are painful please see a Rheumo they handle joint pain the best .
DS has JSpA ( juvenile spondyloarthritis)
We use snuggables
Thermacare hot packs
Warm baths
Electric heating pads
Nsaid prescription gel
Parafin wax - thermabath pro
tramadol
Exercises specific to his joint issues
Swimming in a warm pool
And he takes humira plus Mtx to keep things under control crohns and JSpA wise

 

[Mehita]

We had an awful night with joint pain last night. I did massage, but was considering trying to do essential oils to see if it would work better. Her skin gets very irritated easily, so I would probably use a diffuser to inhale instead of applying to the skin. Any suggestions on what to try?

I'd hold off on oils. There are just too many that are not safe for kiddos and until you really know what you're dealing with, I'd be hesitant to mask any symptoms.

Poor thing. Hugs to you!

 

[trinity1913]

I am so stressed! We went to the ped GI this morning. I was hoping for some sort of miracle and instant answers, but of course that didn't happen. We're starting over with bloodwork and stool testing. She is going to do the fecal calprotectine (hope I have that right). She said that she does everything in her power NOT to do colonoscopy with kids Susi's size & age, and that if it (fc) was negative, we could discuss diet. I felt like it was such a non-answer. She offered an anti-spasmodic for pain, but said it wasn't good to take 24/7, and that if the pain was that frequent, then she shouldn't be taking it.

And while I was there, Susi was all giggles and light. Of course. Susi was complaining about throat swabs and mentioned to the Dr that she hoped they didn't have to do that. The Dr. responded, "no ouchies for me!", meaning no, and that she wouldn't be doing anything that hurt. (My husband and I understood). So she pokes around, and Su doesn't respond, flinch, complain... NO REACTION. We go get the bloodwork, and as we leave, Susana complains of abdominal pain, and I say, "are you sure? Dr. F just poked your belly and you didn't say it hurt when she did it." She responded, "I know, she said no ouchies for me." I asked, "So it hurt?" And she said, "yes, it hurt, I just wasn't going to say ouch because she said not to."

That is very typical of my daughter - she is normally happy-go-lucky and an awesome little actress, and doesn't cry unless it is manufactured tears to get her way (hurt feelings usually) or if it is a sudden sharp pain like a bee sting. Even then she turns it off quickly. She has complete control of her emotions. I sent an email to the doctor afterwards explaining what happened. (I feel like it won't be taken seriously. Maybe that is just my frustration talking).

All of this adds up to me feeling like this is crisis, and the doctor being very calm and relaxed about it all. I am beginning to feel like they're going to diagnose me for munchausen or something. I swear I am going to lose it if I hear constipation, or viral, or "she's fine since the bloodwork was good" or anything like that. I will lose it.

 

[Farmwife]

They so could be sister!!!!! All laughter and giggles until the docs out of the room.

Grace's father and I had to have a few talks about honesty in front of doctors and NOT to tell them what you think they want to hear. It's taking awhile but I think she's starting to get it.
These young ones are way tougher then most!


Grace has never had a budge/ bump/ mass in her stomach!

Keep pushing!!!

 

[Pilgrim]

BTDT with the constipation diagnosis and I remember how frustrating it was and how I had to keep my "game face" on for the GI when inside I was thinking "are you serious?"

Good news is that Fecal Calpro is very specific to IBD and may be all you need to get the ball rolling.

My daughter had to go downhill for 6 months before they finally went to scopes. I believe I read the average time to diagnosis is 7 months and that was spot on for us.

IF your testing shows nothing significant, try to get the numbers (see if they can email lab results to you?) then as things persist with your daughter you can go back for retests and see the patterns emerge for lab numbers. Don't slam any doors. You may need to be heard in a few months. It takes awhile to repair the "crazy mother" damage, BTDT too, unfortunately.

Just a few thoughts, I hope it helps. My daughter was the same way with the acting. She just wants everyone to be happy and everything to be nice and lovely. It gets in the way now, but the upside is that it helps them cope a little better if things get worse. Medical personnel love love love a cheerful little patient so they have a lot of allies later on.