Intro, son with Crohn's

[Jenn]

Hello,
I'm so grateful for this support forum! I joined a few months ago and have been reading off and on and wanted to post our personal story as introduction.

My son Alex was diagnosed at age 8 with Crohn's disease just one year ago. He was mostly symptomless, but in hindsight it's clear there were clues. It started with an anal abscess 8 months before diagnosis and the drainage wound never healed. Surgery discovered the fistula, so we followed up with a pediatric GI. Bloodwork showed inflammation and nutirition-deficiency. By all appearances he seemed normal, only pale and tired, no appetite. We didn't see the growth failure for a long time. Diagnosis was official after an endoscopy/colonoscopy with biopsy and upper-GI flouroscopy. Have also followed up with DEXA, swallow study, bone age xray (he's bone-age 7), MRIs.

He went 7 months on 6MP which helped, but didn't quite push him back to normal. About 6 months ago, he got a new fistula. Instead of surgery, he was successfully(!) treated with 8 weeks of IV antibiotics (Cipro/Flagyl) through a PICC line. We then decided to switch to Remicade. He's gained 10 pounds and about an inch in height in the 4 months since. These are such scary medicines to contemplate, but Remicade was a nearly instant change in his color and energy. And his bloodwork shows him finally back in normal ranges. I hope he keeps tolerating it for a long time. We also have a busy daily schedule of vitamins, Balance nutrition bars, probiotics (Culturelle and Primal Defense), psoriasis cream, and steroid eyedrops. His doctor also has him on a low-fiber, lactose-free diet.

As you all know, it's quite a roller coaster. And my son is difficult and stubborn, smart and silly, creative and an immensely picky eater, but amazingly resilient... We have struggled with his health all along: ear infections, tonsillectomy, terrible asthma, now Crohn's. pretty typical kid, he likes to play video games and baseball. In addition to Alex, my husband and I also have a 13-year old son and 2 cats.

Thanks!
Jennifer

 

[izzi'smom]

WELCOME! and thanks for sharing your story!

 

[LilyRose]

Welcome!

I am sure you will find lots of support here. I know I have been so relieved to find this forum and share with other parents of childrens with Crohns.

I knew of Crohns before my little boy was diagnosed at age 5 (now he is 6) but I had no idea that little kids could get it.

Best wishes,
LilyRose

 

[scottmyster]

HI Jennifer, Welcome to the forum, This forum is very supportive and well knowledged especially when it comes to Crohn's and Colitis. I hope your son does well on Remicade and i hope he stays in remission for a long time to come. Thanks for sharing your son's story with us. If you have any questions please feel free to ask them. Has he had his B12 and iron levels check lately? this can cause fatigue so watch out for it, especially if he seems a bit low on energy. Most likely his doctor or GI specialist would check for it anyway i am sure. Like i said best wishes with the medication remicade. best wishes.::rosette2:

 

[Dexky]

Welcome Jennifer! I'm with you on the scary meds.

What are the eyedrops for? Has Remicade helped with that or the psoriasis?

 

[DustyKat]

Hi Jennifer and :welcome:

I'm so glad you have found your way here , it is a wonderful place for support, information and understanding.

He was mostly symptomless, but in hindsight it's clear there were clues.

I so hear you on this, even though I already had one child diagnosed with Crohn's my son's symptoms were so very subtle and easily explained away that I didn't even suspect CD with him. So when I asked for inflammatory markers to be done little did I imagine that he would also have that diagnosis two weeks later.

I am so happy to hear that the Remicade is working well and I too hope that it lasts a lifetime hun. I am curious too as to whether the Remicade is helping with his extra intestinal issues?

Good luck and welcome aboard, it's great to have you here.

Dusty. xxx

 

[schwartz26]

Welcome! I am also new here, glad you found the forum, everyone seems very helpful! I am curious, is your son having eye issue due to crohn's?

 

[Jenn]

Thanks for the welcome everyone!

scottmyster: He was on both iron and b-12 chewable supplements, just took him off iron, as that was finally normal and we are testing b-12 later this month and hopefully stopping that one too.

Dexky: He has redness - one vein/splotch in one eye, opthamologist says it's vernal conjunctivitis, an allergy that flares in the spring with dust/pollen etc. I guess it's common with young boys, typically outgrown by teen years. But that was before the Crohn's diagnosis, so it could well be related and/or permanent, it's not clear to me or his opthamologist, but his eyes are healthy. We'll keep monitoring. I was hoping the Remicade would help with both, but it really hasn't helped with the eye redness or the psoriasis patches. Both respond quickly to short-term, low-dose steroid applications though.

DustyKat: I now look at my older son with some concern too. He's always been very healthy and energetic, but you never know. I guess it's a high chance to have Crohn's if a sibling has it? We hadn't heard of it all before, but later found out one of my husband's cousins was just diagnosed a few years ago too. No, the Remicade seems to not be making a difference in his skin rashes or eye redness. It is helping his clubbed fingers/toes, but I think that's mostly in recovered nutrition absorption with his inflammation down.

schwartz26: I'm really not sure, we got the vernal conjunctivitis dx before the Crohn's dx, they could be related after all.

 

[Max's Mom]

Hi,Jennifer,our story with Max is very similar to yours. He got a very painful fistula when he was 8 and we found out that he had Crohn's shortly thereafter through a blood test. We got rid of the fistula with antibiotics and haven't heard from or seen it since(thank God)He has been on Remicade for a year and is doing great.He is 11 now.He has also had some dry and scaly patches. We ended up going to a Dermatologist for that. They said it's excema.We treated it with a prescribed lotion and it's much better now.Everybody here are very helpful.They are the experts on this terrible disese. Good luck with everything.Cecilia

 

[DustyKat]

DustyKat: I now look at my older son with some concern too. He's always been very healthy and energetic, but you never know. I guess it's a high chance to have Crohn's if a sibling has it? We hadn't heard of it all before, but later found out one of my husband's cousins was just diagnosed a few years ago too. No, the Remicade seems to not be making a difference in his skin rashes or eye redness. It is helping his clubbed fingers/toes, but I think that's mostly in recovered nutrition absorption with his inflammation down.

Goodness me, what a coincidence! The only other link we have in the family is a cousin of my husband. :ywow:

Unfortunately there is a higher risk when one sibling has it, there is a 30% chance of another sibling developing it. Hopefully your son is not in that 30%, everything crossed!, and the cousin that has CD has two brothers and neither of them have it.

Dusty. xxx

 

[Dexky]

Yeah, every time one of EJ's sisters gets a stomach ache, I feel that same dread. I try not to project but it's difficult to say the least. I also warn them away from N-SAIDs but both daughters suffer menstrual cramps so Ibuprofen is the first thing they go for. I will not worry! I will not worry!.....ah, who am I kidding!!!