14 year old with high CRP & ESR

[sassychic]

Hi..looking for guidance and support.

My 14 yr old daughter has been exhibiting signs of crohn's or celiacs,(celiac tests came back negative) or colitis for about 2 months now.
In nov. she weighed 104, now she is down to 90.

She has diarrhea all day long, constant cramping.even if it's little amounts, several hemorroids as a result, weakness, fatigue. Can't stand for long periods of time due to joint soreness. She goes the the bathroom, goes into her room and then has to go again. She goes even when she hardly eats anything.

She has ulcers in her mouth, genital area and had acne like eruptions on her
bum.

It took a bit of prodding to get her doctors to see that this wasnt the flu or a stomach bug.

So, she had a cat scan-nothing serious shown. No bowel inflammation.

CRP of 109.6
ESR of 75.

So there is inflammation somewhere.

Her GI will do a endo/colon combo on Tuesday. She said there might be hidden Crohn's? Anyone have experience with this? Could she have a colitis disease even if it doesnt show on a scan?
Would the scan have showed any tumors if she had any?

Just worried sick and she is suffering as she is not on any meds yet. We all can't wait for Tuesday.

Her doctor is also sending her to a RA doctor.

What is causing her inflammation levels to be so high?

Thanks for any help given. I know no one has any answers, but experience will help.

 

[beth]

That pretty impressive inflammation markers there! The trouble is anything could be causing them to be high, from Crohn's to the joint pains. The markers do not, unfortunately as you have realised, tell you where it is. The 'scopes will usually find Crohn's - it is the gold standard diagnostic tool, have a look through 'both ends'. It wont be able to look through the small bowel tho, only the entrances.
I haven't had any scan's with my Crohn's so haven't quizzed the docs on the why and wherefores of them. I'm guessing they are a bit of a 'blunt instrument' when it comes to the subtleties of Crohn's or Colitis.

Good luck for tuesday, and hope the doc's find some answers!

 

[Crohn's 35]

Awe such a worried mom, and bless you for caring enough to reach out to us in support and help for your daughter and to help you too. Many of us have tests done and doesnt always show, even biopsies can be missed if it is not in the exact area. Scans will def shoe tumours, but I am sure you can rule that out. Crohns is a very tricky and frustratind disease. I too lost a ton of weight but then I ended up in emergency laproscopy, after a year of tests. Since she is not on any meds, get her some High protein Ensure, it is lactose and gluten free and replaces the nutrients she is losing. Drinking water to replace the water loss in having D is best so she doesnt get dehydrated. Probiotics in refridgerated health food stores may help as well.

Try not to worry, I know it is hard, as we Crohnies, know about stress. If she gets to the point of so much pain, get her to emergency, especially if she is vomiting. So sorry she is going thru so much. I am sure that if the tests reveal she has Crohns, they may get her on Prednisone in high doses to get her wieght up and feel better, until they get her a maintaince drug. Hugs to you both!!

 

[Peaches]

Poor baby, sounds miserable! I was just reading through my medical records last night and was actually pretty impressed with what they were able to report just through a CT Scan. They could see narrowing of my terminal ileum, and thickening in several other areas - which is all related to my Crohn's disease. I think they could even see scarring from my surgery and chronic inflammed area post surgery. I don't know if they can see frank ulcerations though - which is what the scopes are good for. I know it is hard to wait - but hopefully Tuesday will bring some answers. If nothing is straight forward - the Rheumy appt is a good path to go in, especially with the joint pain. I hope they figure something out and get her going in the right direction soon - feel so bad for her, I'm sure she is no happy camper at the moment. Let us know how things go!

 

[sassychic]

Hi..thank you all so much for your posts, and experiences. I really appreciate it.
I know at this point, just making her comfortable is all I can do.

Im not sure why they are referring her to an RA doc. She does have pain, but I didnt know that RA could cause such bouts of diarrhea. It does appear to be some autoimmune disease, that's for sure.

Ill keep you all updated. Hopefully, I can post here on Tues with some definitive answers.

Thanks

 

[imisspopcorn]

Good luck to you both.

 

[tiffnzacsmom]

I feel for you, my daughter is 14 and has sluggish bowel so between the two of us we use normal amounts of TP. Not being flip, just know its hard to watch our girls suffer with anything. Her levels sound a lot like mine, nearly identical numbers and my doctor is re-testing mine before sending me to a RA doctor. My scopes came back fairly clear so he thinks its IBD and lupus.

How is the school handling her illness?

 

[shazamataz]

So sorry to hear of such a young wee thing going through this
The inflammation tests show there is DEINATELY something going on! I hope you get some results on Tuesday. My theory on the CT is that perhaps if she is in the very early stages there would be no clear thickening or narrowing to show up on a scan? I do hope she DOESN'T have Crohns!

Best of luck

 

[sassychic]

Thanks for all the well wishes. It's good to know we are not alone!

My daughter was put on amoxicillin in Oct for dental surgery.

I noticed there is a condition called pseudomembranous colitis
which happens when antibiotics kill the good stuff in your tummy and
an infection starts. The bad bacteria is C. Dificile, which was tested
in her stool samples and came back negative. I called her GP yesterday
and they didnt think this was what was going on.

If they are wrong, and it is, then more meds would be needed and that would
be it(other than watching her antibiotic use for the rest of her life).

Who knows. She still has all those sores.

Today is her birthday! Hopefully we will have a good day.

Take care everyone. Thanks again.:ylol2:

 

[Peaches]

Tell her happy birthday for us! C dif is pretty nasty as I hear - horrible horrible diarrhea. I'd probably trust the test on that one. Keep us posted....

 

[pain in the butt]

Good Luck and Happy Birthday try to enjoy! My heart goes out to you both! Keep us posted.

 

[sassychic]

Thanks for all the well wishes. We had a nice time last nite. Couldnt eat alot,but we still got her out of the room.

She bleeds alot when she goes to the bathroom. She says she's bleeding every time she goes. She has two hemmorroids, so I'm thinking it might be those, but how do we tell if it isnt?

Got the moviprep for her visit on Tuesday. Anyone know how it tastes?

And also, will GI tell us if they see anything right away, or will we have to wait?
What are your experiences?

Thanks, gotta get ready for a snowstorm here in NH.

Take care people!:tongue:

 

[Crohn's 35]

I have a colonoscopy next Thursday but one of very many! I am sorry I have never used the Moviprep, I have used the Pico Salax which I know tastes good.

As for the results, if you are there with her as she wakes up, most Gi's (at least all mine have) always told me right then and there yea or nay. Sometimes if they dont see anything they may take a biopsy and you may have to wait for the next appt, not sure how it works where you are.

She will be just fine. Most light coloured blood is surface like Hemmies but dark red comes from the inside. She may not want to do this but taking a picture and taking it to the GI can help with colour and how much. Good luck to you both!

 

[Peaches]

Mine usually tells my husband stuff right away. Well, he usually goes in with me so he knows what happened anyway come to think of it. I had to take my Mom for one and the doc told me the results right away. Unless, of course, they have to rely on biopsies like Jetta said.

They should be able to tell you if the blood is from the hemmies or not after exam. Do they have her on any meds currently Sassy? May want some paper to write things down when the doc comes out just in case there is a lot of information. Sometimes it can be overwhelming, sometimes they just tell you one or two things. Tell her we are thinking about her......good luck!

 

[uli]

Hi Sassychic!
Your daughters symptoms are almost exactly similar to what I had in September although my CRP went up to 232. The bleeding is hard to say where it comes from but the colonscopy will give you a lot of answers ( can normally be seen right away ) and she will probably be put on prednisone after that - then different meds can be chosen by your doc. All the best wishes from Scandinavia - which also has snowstorm !