My child has Crohn's

Hello everyone,
My name is Heather and I am joining this forum because my 3 and 1/2 year old son has been diagnosed with crohns (he also has high functioning autism). I always knew something wasn't right. He barely eats and has never in 3 and 1/2 years had a solid BM. Right now we are in the process of trying either Humera or Remicade. None of the typical treatments have worked. Our biggest challenge right now is trying to potty train him and get him to eat more. His weight has stayed the same for over a year. I look forward to hearing from all of you.

Hi! I have a 10-year-old boy with Crohn's. We have also tried the traditional meds-with no success. He has been on Remicade since May 2010 and is doing great. In the beginning the treatments were rough,but now he's used to the procedure and actually he looks forward to the bacon he gets at the hospital.Hang in there,things will get better!

Hi Heather, I'm glad you were able to find this forum. What a tough situation you're in, you poor thing. I see you already found the Parents of Kids with Crohn's forum, so that's a great start I just wanted to wish you and your little one all the best and let you know that we're here for you. Many *hugs* your way.

I had symptoms from being about 5 and was diagnosed officially at 7 (now 19). I was on pentasa (mezallazine) for 6 years and steroids to treat flare ups. also liquid diets and rubbish like that, none of it worked properly. Went on azathioprine when I was 13 and it's been amazing. i'm not too sure if there's an age you have to be before you could go on it though...
It's interesting that he has autism, they say there's a link between diseases like Crohn's and autism.
Hope he's okay and gets better soon
xxxxxxxxxxxx

Hi Heather and :welcome:

You certainly have a lot on your plate. I have seen your thread on the Parents Forum about toilet training but unfortunately I don't have any advice about that as I haven't had to face that with my children. I know there are parents here though that have or have had children diagnosed that young.

We also have a couple of members here, there may be more, that have experience with ASD. I don't think they would mind me mentioning who they are: Joan (Astra101) works with autistic children and dingbat has a child with autism, but without IBD. They may be able to help out with the IBD aspect of things as well as issues affecting other areas with your son.

I more than anything you find the answers you need. Good luck, welcome aboard and keep us posted!

Take care hun, thinking of you, :hug:
Dusty

I was diagnosed at 7-8 years old, but had symptoms since I started walking and always had serious potty issues.

Also, my oldest boy is on the spectrum, so I understand some of that side of things too.

One little thing I wanted to mention - When I was 8 years old, I weighed 38lbs. I have one specific picture that still freaks me out to look at from that time. I know it's really hard when you have a child who can't maintain or gain weight. Just the look in my parents eyes back then was enough to still haunt me, no matter what they did to hide it.

When I was 8 the doctors decided to operate on me, failure to thrive was a huge issue, as well as the meds not working. At that point, 1980, they were still treating with prednisone and little else. When they went in they discovered things much worse in there than they thought, but that's another story.

The doctors hoped to give me some growing time, hoping the malnutrition and failure to thrive hadn't messed my body up too badly. I'm 5'9". My mother who suffered from 12-16 before they operated is only 5'1" and rather strangely proportioned. She swears she was supposed to be six feet tall as she's all leg.

I just wanted to mention this as while surgery is drastic, invasive and really sucks, sometimes it's about the only thing to give a child who's failing to thrive some growing time.

Keep your chin up. I know it's hard.

Hi Heather and welcome.

I am so sorry you are going thru this with your son. I hope you can find a treatment that works for him and gets him feeling better so you can get him potty trained!

Good luck - keeps us posted on his progress.

- Amy

You both have a challenge ahead it sounds. I wish you both the best of luck and remember life always gets better...it might beat the hell out of you first but if you keep getting up eventually you'll get a leg up on it.

Yes, welcome! I'll say more over in the parents' section!