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Worried about my daughter..

Hello everyone!

My daughter is undiagnsed...and may never be...but I have been worried for the past several months. We do have an appt with a Rheumatolgist coming up because of her joint pain. But Crohn's fits too in some ways. My mother has an Autoimmune disease...but there isn't Crohn's in the immediate family...some distant cousins have it though. Just hoping to find some support as I am very anxious!

My thoughts are with you all!! Not feeling well so often has to be so hard!!

Lisa
 
Hi momofkkcg

I hope your daughter (and you) get some answers soon. Has your doctor also arranged an appointment with a gastroenterologist to see if there's a possibility of Crohn's? What symptoms does your daughter have that makes you believe that she might have Crohn's (other than joint pain)?

I don't doubt that you must be anxious on behalf of your daughter---it is never easy to sit by watching someone you love experiencing pain.

Wishing you well at your rheumatologist appointment.

Cheers,

Kismet
 
Hello Kismet!! AAAhhhhh...the story is so crazy long...I did post in the parents forum though...maybe somehow you can search for it!

Her symptoms:
Long lasting low grade fevers...sometimes for weeks...
Swollen red gums...has only had two actual mouth sores
Tummy Aches...no diarrhea
Joint pain...no swelling or redness
Elevated Sed rate and CRP last year...hasn't happened since
Rashes
growing has slowed....from 50% percentile in height and weight to 13% and 8%
Bruising on her legs...but thank goodness I took pictures...I think it was Erythema Nodosum.

Her doc did not agree with me when I asked for a referral..."If I thought something was wrong with her I would have referred her"....so I was going in this alone...I asked to see a Rheumy....and he gave me the docs name who is a Rhuemy/Immunologist...I'm hoping they will be familiar with Crohn's as well...since it is Autoimmune. I had never thought of this until I started researching her symptoms.

Thanks for the well wishes!! I hope I'm wrong! And I hope she gets better so I stop thinking!!

Thanks for your respone...it's nice to just talk...my husband sees her running around and playing when she feels well and says...see..she is fine! I'm not so convinced yet!

Lisa
 
Hi Lisa

Hmmm, I'm wondering if it might be worth seeing an immunologist to begin with so that you're not running to a whole lot of different specialists who deal with very specific auto-immune illnesses.

Go with your gut and your base feelings. You've been watching over your daughter since birth and you would know something is wrong---I know from experience that our moms are our most tenacious advocates!

There are some amazing parents in the Parents forum and I'm sure you'll get lots of wonderful support and feedback there.

Cheers,

Kismet
 
Welcome to the forum. I wish you all the luck in trying to find out whats going on with your daughter. No one in my entire extended family has an autoimmune disorder or even ibs. So when i got diagnosed with crohns disease i wondered if genetics really play a big role. Luckily im doing alot better now and i was just diagnosed in february. How old is your daughter?
 
Thanks for the welcome and well wishes!! I'm so glad you are doing well! She is just 7 years old...8 in December. I do hope it's a lot of worrying for nothing! But there is enough going on to warrant seeing a specialist....I think so anyway. We shall see!

Lisa
 

AndiGirl

Your Story Forum Monitor
Hi Lisa, and welcome to the forum. You are in the right spot to receive support and information. There are many wonderful parents who have children with CD. There are also others who are in your situation, trying to find answers. Please make yourself at home here. :)
 
Hello everyone!

My daughter is undiagnsed...and may never be...but I have been worried for the past several months. We do have an appt with a Rheumatolgist coming up because of her joint pain. But Crohn's fits too in some ways. My mother has an Autoimmune disease...but there isn't Crohn's in the immediate family...some distant cousins have it though. Just hoping to find some support as I am very anxious!

My thoughts are with you all!! Not feeling well so often has to be so hard!!

Lisa
I'm 40 and Chrons does not run in my familly, I got it from a bad reaction to some antibiotics. I found out after my surgery that I have Chrons, wish I'd know earlier. She might have Chrons but maybe it could be irritable bowel syndrome, or hopefully something even less serious, don't just believe one doctor like I did, go see a few, I was waiting for an appointment when I ended up in the hospital, my appointment was July 27 and I was in surgery July 5th. Then I was diagnosed last week, can you believe it? I should have seen more doctors instead of waiting.
 
I'm so sorry about your new diagnosis! I hope at the very least you are feeling better after your surgery! This waiting game is a little ridiculous isn't it?? It seems all Autoimmune problems seem to be this way...no clear cut answers until things are serious! Thanks so much for your response...it is encouraging. I have been so nervous about pushing for an answer...afraid to offend my Ped...and afraid I'm making something out of nothing..and afraid something is brewing! You just gave me the courage to go ahead and ask some questions!

Good luck to you!!
 
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