My 4 year old son had Crohn's

[steveh]

Hi everyone. I just wanted to come by and introduce myself and tell about my son. My wife and I have a 4 year old who was diagnosed with Crohn's 1 month ago. Needless to say, I am a bit terrified about everything. He has been on prescription antacids, steroids and an iron multi-vitamin since being diagnosed. We spent the better part of the winter not knowing what was wrong with him. in December, he started to have severe fatigue, that was actually diagnosed as mono. I did not know a 4 year old could get mono, but he did. the fatigue continued, and severe pain developed. we eventually were sent by our pediatrician to see an infectious disease doctor. The pain only grew, and the fatigue continued. We were finally sent to a pediatric GI doc who ordered a colonoscopy and an endoscopy, which showed that he did, in fact, have crohn's.

We are starting to come to the end of the steroid run, and he has gotten loads better since being on them. There have been some side effects, but he has gained back his weight, and is active again. Our GI doc told us that he wanted to start him on a new medicine to control the disease once the steroids are over. We had to have another blood test to make sure that his blood could handle the new medicine, as he is terribly anemic on top of everything else. What I am most worried about are the side effects of the new medicine. it seems that everything I research mentions an elevated risk of lymphoma and hepatosplenic T-cell lymphoma.

Is anyone out there having similar experiences? How do you cope with this? How is the treatment going? We do not have support groups for this in our area, and I am at a loss for how to really cope with this now.

Thanks,
Steve

 

[xJillx]

Hi Steve. I am so very sorry about your son. I am happy to hear he responded well to steriods, but your doctor is right, he will need to start maintence medication to keep the inflammation from coming back.

There are many, many parents of children with IBD on here. Do check out the Parents of Kids with IBD subform under the Support Forum. Loads of good information in there.

Good luck, Steve, and I hope your son continues to improve!

 

[rygon]

hi ya. Yeh the maintenance meds are a must really, Do you know what they are. Steroids are very good short term but do have long term problems acssociated with them.
May also be worth making a diary of what your kids eats/drinks and how he feels. A lot of people find certain foods trigger flares

 

[Jer's Girl]

This site will help loads i promise, and there are a lot of parents on here who will understand exactly what you are going through. Also, I wonder if there is a support group in your area? It might be worth looking into since you are having a hard time with this (understandably so!). I can't imagine what it must be like to have a sick child. Good luck to you, and welcome to the forum!

 

[MumofOli]

Hi, welcome. I only joined forum yesterday and have already found it such a help.

My son is 9 and was diagnosed in early march he is also anaemic, he ended up having a blood transfusion a few days later and he started a maintenance drug called azathriopine 3 weeks ago but yesterday they halved the dose to 25mg because he was having bad nausea and dioheara. The maintenance drugs are really necessary but it's also worth noting what he eats and possibly keep his diet bland for a bit.
:ybiggrin:

 

[DustyKat]

Hi Steve and :welcome:

Sorry you had to find yourself here and so sorry to hear about your little guy, but on the upside it is a great place for support and info.

As Jill has said, there are many parents that hang out here, even a few from Kentucky!

As parents, we all have the same fears and concerns you do Steve about the drugs our children need to take. We really are between the devil and deep blue sea and it's an horrendous situation to be in. Everyone is different but through my own personal experiences I see the medication as the lesser of two evils, in our case untreated Crohns would have had dire consequences so seeing my children healthy again is what I console myself with concerning the decisions I have had to make.

Brian'sMom has posted an excellent link about the risks of various medications used to treat IBD, it really does help you to put things into perspective which is so difficult to do when faced with these types of drugs...

http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf

I am guessing that the test your son had was a TPMT test and they are looking at starting him on 6mp or Azathioprine?

My children are significantly older than your son but my daughter started on Imuran (Azathioprine) following surgery nearly 5 years ago. In her case she has been in remission since then and has not had any adverse side effects. My son has just recently had surgery and he is also on Imuran, so far so good and I am hoping he has the same positive outcome his sister has, fingers crossed!

You are not alone Steve and I hope you stay around here 'cause it really is great and friendly place. Nothing is too much information so any questions just fire away and we will do our best to answer. Most of all, good luck to you and your little boy and welcome aboard!

Take care, :hug:
Dusty. xxx

 

[ameslouise]

Hi Steve and welcome. I am so sorry to hear about your son's diagnosis. As parents, we just wish we could take away their pain.

There's nothing more I can add that The Queen ^ Dusty hasn't already said. Hang out with her and you'll learn tons!

Good luck - I hope the little guy is feeling better.

- Amy

 

[Dexky]

Hi Steve Welcome!! I'm in BG, so no help in your search but you've found a great support group here!! My son was also on 6mp/Aza that Dusty was speaking of. It gave him a good year but we've recently moved on to Humira. Like Jill said, come on over to our house in the Parent's section. Hey, we may even make you smile once in a while What's your little guys name?

 

[steveh]

Hey everyone. Thanks for all the kind words. It seems that I am learning more and more everyday about Crohn's. The meds that our doc wants to start Will on is Imuran, but we had to have a special blood test before he can go on it, and if he cannot, out next option is remicade. I'll keep everyone posted in the parents forum. Thanks again for all the support.

 

[Dexky]

Yep, Imuran is Aza/6mp. EJ never had any ill effects from 50mg for a little over a year and while he felt great during that time, the 6mp failed to achieve full remission. I hope it works for Will! Good luck!