Waves hello- mother of 9 year old

My son was diagnosed with CD in June of 2009. He did not have any diarrhea. Instead his symptoms were stomach pain, low grade fever, blood in stool and dramatic weight loss.

We were fast tracked through a pediatric GI since he was 40# at diagnosis. Treated with Imuran, pentasa and entocort or prednisone with out success. Could only maintain remission with high doses of prednisone. Colonoscopy at diagnosis showed inflammation at ileum. Repeat colonoscopy in March showed irritation/inflammation throughout his intestines and rectum.

In June of 2010 I managed to get the approval for Humira scripts (insurance approval happens within the inner rings of hell IMO). Since he has started Humira has gained weight, has energy and able to participate in more activities. He is now 80# and appears to be symptom free and only taking Humira and pentasa

Just worried about him and trying to get adjusted to our new lifestyle. Our pediatrician does not have other children taking Humira so she tends to be extremely cautious with every issue. Trying to find other parents or individuals taking Humira that have more real world experience

:welcome: Zoodles :bigwave: waves back! Glad you are here, and I bet your a very worried mom, and your son looks like he had a rough time. I know you are worried about Humira, even though you see or read some horror stories, I must tell you that all symptoms have to be reported. Everyone is different with the severity and location of Crohns but the most common is the Ileum area. Many people have done amazing on Humira, it was too mild for me so it petered out.

Our main goal is to be pain free, since you have experienced childbirth you can relate to the pain some of us Crohnies have. A bowel obstruction (narrowing or strictures in the Ileum) is more painful than natural childbirth, I know been there many times. Your son is being well looked after, and rest assured as long as he has regular blood work and eats well, try to rest easy. I know you worry, just make sure his nutrition is adequate and Ensures once a day can help if you worry of that. Again welcome to the forum, great people here to help you answer questions or if you need support. Hope we can help ease your mind! Welcome aboard!

Welcome. As Pen said, keep up with regular blood work and be aware of side effects to look out for and don't worry too much. Personally, Humira worked well (complete remission) for about a year then lost its efficacy. Hang in there!

I had no side effects from Humira that I took for over a year. It however never shut down my flare totally. And eventually stopped working..but if its working for your son then that is a good thing. I read the side effects list once and then tried to forget them.. way to scary for this mom of 4. But this disease running rampant is worse then those listed side effects so I just took the drugs..

countrycoffeehouse said:

I had no side effects from Humira that I took for over a year. It however never shut down my flare totally. And eventually stopped working..but if its working for your son then that is a good thing. I read the side effects list once and then tried to forget them.. way to scary for this mom of 4. But this disease running rampant is worse then those listed side effects so I just took the drugs..

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Hi :bigwave: CCH, welcome to the forum! Glad you found us, and it would be great if you could tell us your IBD story with us. Post it on YOUR STORY on the main board so everyone can meet and greet you!:ycool:

Thanks everyone. I know he has a much better quality of life with the Humira. It's just my pediatrician is making it very hard to relax. I'm hoping that this forum will help me find the balance between the sky is falling reaction of his pediatrician and my head in sand denial approach

The "it could be worse" mentality helps me stay (more) sane.

Hi Zoodles and :welcome:

Sorry you had to find yourself here but glad you found a fab friendly place with loads of support and info. I can't help you about the Humira as my daughter's treatment took a different path but I hope it all works out well for son and he has a very, very long time in remission. I think as parents the medications required to gain and maintain remission for our children are pretty damn scary to say the least but when I think about my daughter prior to her op well..............I couldn't bear to go back to that time. I hope you stay around as we would love to have you here. Good luck and welcome aboard!

All the best,
Dusty

Zoodles said:

I'm hoping that this forum will help me find the balance between the sky is falling reaction of his pediatrician and my head in sand denial approach

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Welcome Zoodles!! Wow, you really said it there^^^!! That's exactly what cf has done for me!! Our big bad wolf so far has been 6mp so I can't speak to Humira. Good luck!! I know what you are going through!!

Hi Zoodles
and welcome

so sorry to hear this about your son, but to say what a great Mum you are!
I haven't tried Humira, but I'd like to in the future if things get worse!
glad you found us, lots of friends here for you
lotsa luv
Joan xxx

Well, thanks for the kind welcome. I've decided to interview for other pediatricians and look for somebody with more depth and experience with chronic illness. Love our gastro and getting tired of feeling stressed by our pediatrician. Had another episode with pediatrician last week that was the final straw.

Hello Zoodles!!! I am new here too, I joined because I have an 11 yr old son who was diagnosed with Crohns at the age of 7. I know you worry about all the drugs we have to give our children to get thru this disease. I have to say my son has done the Prednisone, Remicade, Methotrexate(this was the one that really did a number on him), Humira, 6mp, LDN and now Leukine. As I said above the only one that really bothered him was the Methotrexate, we had no major problems from the others unfortunately for my son there hasn't been a med yet to put him into remission. I wish you and your son the best thru this journey. At least we know we have others to help us thru it.

We went to the GI for routine appointment. My son was one of their first patients at the Dr's new practice. Always dreaded these appointments even though they are great people/practice. No signs of allergic response and he's back on the growth curve. Blood work was normal.

I never thought I would be so happy about a doctor's appointment! Wanted to thank everybody that has shared their experiences.

This is so great to hear Zoodles! May it last for a very long time to come!

All the best, :hug:
Dusty

All the very best to you and your son, great news!
xxx

effdee said:

The "it could be worse" mentality helps me stay (more) sane.

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"This too shall pass" is the one that gets me through

That's great Zoodles!!

Hi Zoodles,

Glad to hear the good news!

I just wanted to let you know that I was also diagnosed at 9 years old, and that was in 1963! It's been a bit of a roller-coaster ride (whose life isn't?), but all in all, my life has been good. So be comforted that people can live with Crohns' from an early age and still be happy & productive.

My best advice? Be completely open and frank about the disease and don't let your son ever think he's different or less than 100% because of it. Back in the sixties it was thought that Crohn's was psychosomatic so there was always this undercurrent of "what's wrong with Sandy that he has this disease?" Taking me a awhile to get past that. Fortunately we know a lot more nowadays!!!

Take care --

Sandy

Dx 1963
Now on:
Asacol
Azathioprine
Rowasa
Budesonide (sprinkled lightly in Rowasa, shaken, not stirred)
Folic acid