Newbie Here

[schwartz26]

Hello,

I can't tell you how happy I am to have found this website! You all seem so very supportive of eachother and of course helpful! Here is a little background info.
Ryan my 12 year old son had been having severe stomach pains off and on sicne he was 4. I would bring him in when it was bad and without any testing they would just tell me he was constipated even afer I would tell them he wasn't and that he had Diarrhea. Nobody would listen. Now the episodes were very frequent he lost weight, he is almost 13 weighs 60 pounds and is 55 inches. I demanded some testing. His bloodwork came back with very low albumin(sp) high sed, low hemoglobin so he was sent for CT before a referral to a GI. CT showed multilple long segments in his small intestine were narrowed. GI was for sure it was crohns, but we did the Colonoscopy and Endoscopy just to make sure. All was good up top and colon was good but he was able to get to the start of the small intestine to find bleeding ulcers and multiple deep ulcers so it was confirmed crohns.
Ryan is now on 40 mg of Prednisone until the approval comes through for the Remicade infustions.

I guess I am wondering if he gets on the Remicade is it possible be may never have a flare again or is that just wishful thinking? Also, do people find it difficult to stay on the treatmenst when they are feeling fine? I was given so much info that my head is just spinning and just trying to sort it all out. How about growth...before we found this out we had scheduled an appointment with a Endocrinologist about his growth, the GI thinks we should cancel it as they won't do anything until he is treated for a while and believes we will see him shoot up once he gets on Remicade? Any thoughts on that? Sorry for all the questions and thanks for your help and support!

 

[Astra]

Hiya schwartz
and welcome

I hope you don't mind, but I've moved your post into this section, parents of kids with IBD, there are people in there that can help you with your son.
Welcome to the forum
lotsa luv
Joan xxx

 

[Dexky]

Welcome Schwartz! My son just turned twelve. He lost about a year of growth before and early in his diagnosis. Now that he's in remission, he's really catching up fast. Sounds like your GI doesn't mess around if he's going straight on Remi. We did 6mp for about 18 months and then were switched to Humira. I wish for them all a lifelong remission! I have a friend with ulcerative colitis who was in remission for 30 years until it reflared. Good luck!!

 

[AZMOM]

Welcome schwartz! It sounds like you are in good hands now. Although growth wasn't an issue for us, it makes sense to me that you get the IBD smacked into remission first. Once you know he's able to absorb the nutrition he needs to grow, he may just take off.

Julie

 

[DustyKat]

Hi schwartz and :welcome:

I'm glad you found way here but I'm so sorry to hear about your son. :hug:

Yes! Active Crohns will definitely impair growth so it is probably best to hold off with the appointment until his inflammation is brought under control. My daughter was diagnosed at 14 and didn't remotely look like she was going through puberty. Sarah required surgery and was in very poor condition but about 12 months post op she really took off...big time.

I hate to say it but it is most likely wishful thinking that he will never flare again but we can always hope, hell I do every-single-day! My philosophy now is...every day, every week, every year that they are remission brings forth better treatments and most all the hope for a cure. My daughter has been in remission for over 5 years now and my son is in remission following surgery in April and everything remains solidly crossed! :lol:

Good luck to your boy hun and welcome aboard!

Dusty. :heart:

 

[BoyMama2000]

Hi and welcome.

My son is 13 and we first saw an endocrinologist for growth delay. His bone age is 10.5.

I do totally agree with your GI doc that you should wait. This is very likely the reason for his delayed growth and puberty.

My son did not have any GI symptoms and went through a lot of blood work and a growth hormone stimulation test that was normal. He had no signs of any blood markers for inflammation or malabsorption. One of the things endo looks at is GI related issues for growth and will then refer to a GI doc. You just saw them first!

My son only had an endoscopy because the blood test for celiac disease was not reliable for him because he has a low IgA count. That is often a reason for delayed growth for similar reasons to Crohns.. Therefore the final thing they wanted to rule out before just assuming he is going through puberty late was celiac disease so they did an upper endoscopy.

To the surprise of the GI, there were ulcers in his stomach, and a granuloma that is highly suspicious of Crohn's disease.

I called the endocrinologist to see if she wanted me to keep the follow up with her (she was going to follow him every 3-6 months) and when I told her he is being worked up for Crohns, she told me to wait until we knew what he had for sure and he began treatment if it was Crohns.

We postponed the colonoscopy with the first GI to go to a specialized group for pedi inflammatory bowel disease since this is now likely a more significant issue.

We see the new GI doc and team on October 4th and will have his colonoscopy and other testing in the 2 weeks following.

I will let you know if they say for me to follow up with the endocrinologist, but I imagine they will want to wait to see how this effects his growth.

One blood marker they often see in kids with growth delay and Crohns is a low IGF-1 (insulin like growth factor 1). My son's was low and that is why they did the growth hormone stim test that was normal.

If they are going to draw blood, you can always ask for them to test for some of the more common blood issues related to growth to ease your mind. You could also ask for a bone age x-ray. It is only an x-ray of his left hand that is analyed to see the age of the growth plates. You need to make sure the person reading them is skilled at this as results can vary if not done by someone with a lot of experience.

Did the GI refer you to a nutritionist? That would be good for you to do so you can learn how to pump as much nutrition into him as you can once his inflammation is down and he can start absorbing all of those great nutriets!

I know this was a lot of info. I think it is fine to just shrug off the endocrine doctor for now and focus on Crohns and nutrition.

Hopefully we will both be on here soon saying how much weight are boys are gaining and how tall they are getting!!!

 

[LilyRose]

Hello!

I just wanted to say 'Hello' and welcome to the forum. I am a newbie too and I know how hard it is to be told your child has Crohn's. I am pleased that you have found this forum.

I hope you medical team can on top of the Crohns quickly and then the growth the just come along naturally. Take care of yourselves.

Best wishes,
LilyRose

 

[Jenn]

Hi,
I too am a newbie here. My 9-year old son, Alex, was diagnosed with Crohn's a year ago. He too is growth-delayed and mostly symptomless, just one section of inflammation at terminal ileum. We followed up with an endocrinologist and it was useful to get the hand xray bone age determination, his bone age is 7, so we now chart his height/weight on that curve instead. He was on 6MP for 7 months, then had a second fistula, so we started him on Remicade. He's gained 10 lbs in just 4 months and his bloodwork is finally back to the low end of normal. Only about an inch gain in height so far, I am anxious for that to kick off, but it might be he just grows for a longer time instead.

Jennifer

 

[Dexky]

Welcome Jennifer! Won't you make an intro thread so more will see Alex's story and properly welcome you. I hope you stick around!

 

[BoyMama2000]

Jennifer,

What were your son's mild symptoms if you don't mind my asking? What initiated the testing for inflammatory bowel disease?

The reason I am asking is that if my son does go on to be diagnosed with Crohns, I am wondering how we will know if he is getting better. His blood work in July was totally normal and he has no symptoms are abnormal bowels at all so I am wondering if the only way to know if he is improving is doing endoscopy.

Thanks.

 

[dodie74]

hi boymama, my story is the same with my son. he is also symptomless, normal poos etc .dont think we would ever have know either without him having all the test he had done. better to know so it can be treated with the right meds. best wishes. xx

 

[Jenn]

Thanks Dexky, I've been meaning to and will do that.

BoyMama: He first started with a fistula - an anal abscess that after draining, never healed and surgery found the fistula. So we followed up with a pediatric GI. Blood work showed inflammation and nutrition deficiency. Then, endoscopy/colonoscopy with biopsy, upper-GI flouroscopy, all pointed to Crohn's with specific terminal ileum inflammation. He has no stomach pain, occasional joint pain. He has a few skin tags/fissures, some psoriasis skin rashes, and an eye allergy. It took a long time to "see" the growth failure and weight loss, but he was unusually tired and pale all the time and had no appetite.

For now, his doctor is going by his bloodwork to monitor that he's better. Since starting Remicade, he acts and looks healthy now too - it made a huge difference in his energy, color, and appetite. Repeating some of the tests might be necessary eventually. I too am wondering when/how doctors declare remission and how to tell when he might flare again.

 

[schwartz26]

Thanks for all the kind welcomes! We are tapering off the 40 mg of Prenisone. We had a good week on 40mg but the Dr now dropped us to 30 mg due to some side effects and the crohns is back with a vengance! I guess that means he needs to go back up to 40? We are just waiting on the approval to start the Remi. I can't wait and I hope it works!
Thank you for the advice on the Endo appointment. I am just fearful of missing that "window of oppertunity" for growth.

Thanks again...I am so glad I have found this site!

 

[DustyKat]

Hey Mum,

One week at 40mgs doesn't seem long enough and then a 10mg taper in one week is pretty big. I know Pred is an awful drug for side effects, as most parent's here can attest to, but I think at your son's age a pretty standard regime is 3 weeks at 40mg and then a 5mg taper every 5-7 days.

What were your son's side effects?

Dusty. xxx