Lost...My 9 year old just diagnosed with "severe Crohns" need advice

[bessy145]

Hello Everyone,
First timer here...My 9 yr old daughter had an endo and colonoscopy 2 weeks ago. The Dr. came out to the waiting room to inform us of the results. The words Acute, Severe Crohns Disease...she was to be admitted immediately. Whoa! didn't expect this...long story short...had a infusion 10mg of remicade, went well and no reactions. THAT NIGHT she went all night without going to the bathroom. The following morning a "semi" formed BM happened.
That was 6 days ago...yesterday a small amount of red blood on tissue, today she pushed a little bit, producing grape size BM's but a significgant amount of blood on tissue.
Anyone know if this is to be expected??
I feel lost, the more I read the worse it seems to be.

 

[nogutsnoglory]

I'm sorry to hear about your daughter. Remicade is a fantastic drug and can take a few weeks to begin working. I don't have experience with remicade constipating. It could be a coincidence and unrelated.

We have a very active parents forum here http://www.crohnsforum.com/forumdisplay.php?f=49

 

[David]

My heart goes out to you, your daughter, and entire family. NGNG above provided the best advice you can get: connect with the other parents in our parents forum. They're an amazing bunch and can provide invaluable support and insight.

Best of luck.

*hugs*

 

[Lady Organic]

hi and welcome.
if blood is on the tissue only there may be a chance this is internal hemorrhoids. Did she had blood before mixed in her stool when disease was active? or it presented in a similar way you are seeing right now (only on tissue?)

 

[mtborn52]

I'm so sorry. I know how hard it was when my niece was diagnosed. I wasn't until I was in my 20's but my mom feels I've had it since I was an infant. They just didn't know what it was...and that's the good news. There is so much information now. So many new medicines and treatments that your 9 yr old will never get as sick as some of the people you are reading about here in this forum.
See if you can find "A Patient-Expert Walks You Through Everything You Need to Learn and Do" The First Year - Crohn's Disease and Ulcerative Colitis by Jill Sklar "An Essential Guide for the Newly Diagnosed". You should find it on Amazon. What is great about this book is she is a person with Crohns who is in the medical field. All information in the book is verified by doctors but as a patient she can tell you things you wouldn't hear from any doctor. I hope that helps.
Also remember that any where you go to eat you can find something for your 9 yr old....you'd be surprised at how co-operative chefs can be when they know you have a problem - so just ask.

 

[my little penguin]

Hugs
We have a parents group here
http://www.crohnsforum.com/forumdisplay.php?f=49

Lots of mommy experience
My kiddo was dx at 7 and on remicade by age 8.
Paging
Crohnsinct jmrogers clash Mehita farmwife
Tesscom Maya

All have kiddies with remicade experience .

If she is bleeding make sure to call the gi to let them know
But honestly it tends to take everybit of the time for all three infusions to get things more stable. For DS it took about 7 weeks -so three infusions plus a week .

The beginning is hardest
Ask lots of questions and vent in the parents section

 

[Mehita]

Are you still inpatient? If not, definitely give the GI or GI nurse a call and report the blood/stool pattern, just so they have it on record. I wouldn't worry too much yet. Like MLP said, it takes time for the meds to work and if her Crohn's is severe, it might take a little longer. The good news is that she DID respond to Remicade. Now it's just a matter of her building up enough to get her through to her next infusion and it can be a work in progress. The other good news about Remicade is that it's very flexible. You can adjust doses or length between cycles to match what your kiddo needs.

About feeling lost... welcome to the club you never wanted to be in. Seriously though, we have a spectacular group of parents here and we'll be with you every step of the way. Ask lots of questions. The first year is hard and overwhelming, but you'll find your new normal eventually. I think the hardest part for us all is not being able to "fix" this.

Please let us know how things are going.

 

[Farmwife]

Hi and welcome.
This happened with my 6 year old. She responded quickly ( that night) but it wore off before the next infusions. I also worried that meant the drug wasn't working. Now it's been close to 6 months and it seems working better for the ibd.

I hope with more time Remicade will do the trick.


Hugs:ghug:

 

[Maya142]

Hi and welcome (but sorry you have to be here).
My daughter has been on Remicade multiple times. For many kids, it's a miracle drug. It does take a while to work though for some kids - my daughter took 4 infusions before she felt significantly better, so the fact that your daughter is showing improvement after just one infusion is VERY promising.

The forum has a lot of great info and many great parents in the parents' section. When my daughter was first diagnosed, it was a life saver. Ask a lot of questions, read as much as you can and hang in there! The first year is tough :ghug:

Hope your daughter feels better SOON!

 

[araceli]

Welcome to the Forum. I am sorry you and your little one are going thru this. Remicade took a while to work for my kid. It has been almost three years she has been on it and in remission since then. I hope remicade does wonders for your daughter too. Sending Hugs and Support.