I think my daughter might have Crohn's also

[CD68]

She's seven. On and off for months now she's had stomach cramps, complains her shoulders hurt, diarrhea, feels urge but can't go. Checked her poo and it's got mucous in it. Tell the ped that I'm anxious about Crohn's since there is a genetic component to it (I think it's like 10% with a kid, anyone know?) and every time I bring in the kid she blows it off, no blood work, nothing, just says it's stress, something she ate, blah blah.

Next time she gets a gnarly stool I'll scoop it all up with a garden trowel and bring it to the ped office in a ziplock bag. Maybe the doc will condescend to do a little blood work or refer me to a ped GI just to get me out of her waiting room. Hmm?

My Crohn's is doing much, much better. Just started Humira three weeks ago and it's pretty much knocked out most of my fatigue and hip and joint pain. I'm able to stay out of bed the entire day and get things done around the house--first time in years.

Alrighty guys, carry on.

 

[misscris]

since there is a genetic component to it (I think it's like 10% with a kid, anyone know?)

I am curious as to the % and likelihood of being genetically passed on as well. My GI didn't seem to answer my question about that when I asked him. If you get an answer, let me know. I haven't researched it yet.

Next time she gets a gnarly stool I'll scoop it all up with a garden trowel and bring it to the ped office in a ziplock bag. Maybe the doc will condescend to do a little blood work or refer me to a ped GI just to get me out of her waiting room. Hmm?

That's awesome. Might get someones attention too!! Ever thought of just looking for a Ped GI and making an appointment instead of waiting for the Ped to listen to you?

It seems a lot of times that Doctors don't listen to moms/dads when they ask about their kids. Instead they just make excuses and send you on your way. My sister has had major issues with that for years now and it just continues.

Congrats on feeling better tho! Hope you get answers for your daughter soon!

 

[daisy_dueller]

Aw...your poor daughter!! It's awful that they won't do ANYTHING for her...like at least try something! Help the poor kid out!

 

[kello82]

hey CD
haha that bit about scooping her poo into a baggie cracked me up! go ahead and do it! at least itll get their attention, sheesh.
well i certainly hope that your daughter doesnt have it as well, but im glad that youre on the lookout and tryin to get her taken care of.
glad that youre feeling pretty good too, thats great!
keep us updated

 

[My Butt Hurts]

I really really hope she doesn't have it. How awful for a child to go through what we go through.
I would push for a test though. I have never seen mucous in either of my kids' poop. Maybe look up what else causes mucous? I can't believe her doc just ignores your concerns.

I am SO happy for you and your Humira though! You sound great! Keep it up!!

 

[CD68]

An update:

Kid tells me yesterday morning: "Mom when I pee little green things come out in my pee" Another trip to the pediatrician. I'm thinking FISTULA. Pediatrician finally thinks it's time for blood work, urinanalysis, stool sample.

It's about time.

 

[Guest1]

Oh no. (((((hugs))))) Bless her little heart.

 

[misscris]

Oh poor little thing.

 

[D Bergy]

I would see a specialist. You would know better than anyone else what would be normal and what is not.

Two out of three of my children have diagnosed autoimmune diseases, and I suspect the third one may have Crohn's, but not bad yet.

Dan

 

[fenway1971]

Hi CD -
I feel for your little one. Keep us updated here.

 

[CD68]

I would see a specialist. You would know better than anyone else what would be normal and what is not.

Two out of three of my children have diagnosed autoimmune diseases, and I suspect the third one may have Crohn's, but not bad yet.

Dan

Wow.

This morning she got blood drawn to see what shows up. If anything shows up in the lab work I'll have it all forwarded to a pediatric GI.

 

[terps02]

I have been been told approx 15% chance for a child to be dx when a parent has it.

Another interesting number - If a parent has Crohn's and then a child gets dx with Crohn's, there is a 88% chance that the Crohn's will appear in the same spot and follow the same track as the parents Crohn's. Crohn's researcher (national expert on Crohn's and Remicade) told me this, which was part of a study a few years ago.

I can say that I am in that 88% (dad has it, and mine started in the same spot). I consider this percentage important because Dad has had two resections. I don't want that to happen to me, so a more aggressive medicine than usual is acceptable.

 

[misscris]

Interesting Terps. thanks for the info you posted. Do you know the study you saw this in so I can view it or read more?

 

[CD68]

I have been been told approx 15% chance for a child to be dx when a parent has it.

Another interesting number - If a parent has Crohn's and then a child gets dx with Crohn's, there is a 88% chance that the Crohn's will appear in the same spot and follow the same track as the parents Crohn's. Crohn's researcher (national expert on Crohn's and Remicade) told me this, which was part of a study a few years ago.

I can say that I am in that 88% (dad has it, and mine started in the same spot). I consider this percentage important because Dad has had two resections. I don't want that to happen to me, so a more aggressive medicine than usual is acceptable.

I thought I had remembered it being a 10% chance somewhere but my thought was that once the kid starts showing serious Crohn's symptoms then at that point there was greater than a 10% chance. I'm still waiting on that bloodwork to come back as of today. I sent her to bed tonight with tylenol and a heating pad.

I don't know when you dad might have had his resections but Crohn's treatment has come a long way since the 80s. That is very promising for us and hopefully our children will have even better treatments than we do.

 

[CD68]

Got a copy of the bloodwork to see for myself. Everything is in the proper range. Doc said she is going to do one more test and then the next step is a specialist. I can't afford to do anything next month, my insurance year starts over and I have to plop down that high deductible. We spent over $8000 on deductibles and unexpected dental needs this year I'm out of money for a while. Another ped told me that the wait time to see a pediatric gastro can be a couple of months so I guess its heating pads and tylenol for the kiddo, which do work for her, while I document the tummyaches and diarrhea. Of course if she gets to bad I'll take her to an ER no matter what.

 

[Guest1]

Got a copy of the bloodwork to see for myself. Everything is in the proper range. Doc said she is going to do one more test and then the next step is a specialist. I can't afford to do anything next month, my insurance year starts over and I have to plop down that high deductible. We spent over $8000 on deductibles and unexpected dental needs this year I'm out of money for a while. Another ped told me that the wait time to see a pediatric gastro can be a couple of months so I guess its heating pads and tylenol for the kiddo, which do work for her, while I document the tummyaches and diarrhea. Of course if she gets to bad I'll take her to an ER no matter what.

Aw, I was just thinking about your little one today. I'm glad to hear her bloodwork came back okay, but sorry to hear she's still showing symptoms. Of course she'll continue to be in my thoughts and hopefully something can be figured out quickly. I hate to think of children being in pain for so long.

 

[terps02]

Interesting Terps. thanks for the info you posted. Do you know the study you saw this in so I can view it or read more?

I haven't seen the actual study. I'm a patient of the doctor that lead the study, which is how i learned about it. But now that you are asking, I would like to see it myself. I'll see what I can find.

 

[kello82]

aw sorry that nothings turning up CD.
well, maybe thats good, good that shes showing normal tests, but sorry that shes not feeling right.
maybe it is normal kiddie tummy things?
hmm one can hope.

will keep hoping for her to feel better asap.

 

[la la]

I have been having simalar problems with my oldest daughter who is 15. I have taken her in several times and they said stress also! My GI said she should see a pediatric GI asap with my history but I can't get an appt w/out a referral from her GP. We have been going round and round with well...mayyybbees?? For too long especially after I have read your post and another mothers struggles with her young daughters dx and treatments. I am going to go to call her doctor again in the morning and make a bigger push for a referral to the specialist.. I hope your little one does just have a tummy ache. Please keep us posted I am curious about how common this is in our little ones...

 

[CD68]

I got a referal. At last appointment doc handed me two more poop containers because she wanted to see for herself, but since then my daughter has had no more belly complaints. I need to call and ask if I can wait til the next "flare" before I bring it in.

 

[la la]

Thats good that her tummy is feeling better for now At least you will have everything ready to go if it or when it bothers her again.. Take care you two and keep us updated!

 

[Jerman]

So sorry that your daughter is having such a hard time. It is always worse when our children are not feeling well, such a helpless feeling you just want to make them better.

Good for you for being such a strong advocate. I would say walk in the office with the Bag O' Poop and your head held high. I bet Dr. Bighead listens to you from here on.

 

[conkeruk]

My Dad got crohns had 3 kids and me and 1 of my brothes have got it 2/3 chance in our case unforuntely!
We are not sure about his family history as his mum was adopted but his Mum or Dad didnt have it.
Just bad luck i suppose