Hello! New to Crohns Disease.

[brianslovie]

Hello everyone. My son is 7 years old. He was diagnosed earlier this month with Crohns disease after an endoscopy and colonoscopy found ulcers in his stomach and inflammation in his large and small intestines. To say it's a shock, is an understatement. His symptoms were lack of growth or weight gain (he was 2% for weight), lack of appetite, loose stools (tho not constant), iron, calcium, and vitamin d deficiency, and rectal prolapse.

He is now on:

Prevacid (30 mg)
Prednisolone (10 ml) weaning now
Pentasa (500 mg) 3 x a day
Iron (60 ml) 2 x a day
Azathioprine (50 mg)

I HATE having him on medication. I'm very natural minded and he's rarely even has tylenol. He has never had an antibiotic or any other medications. So this is really difficult. I feel like I'm ruining his body. It's all been so sudden and I haven't gotten used to this at all.

I really fear for his future. I fear that since he's so young and having developed the disease, he will have more chance of complications and surgeries.

This is so hard for a mama heart to deal with

 

[my little penguin]

Hugs my DS was also dx at age seven and also has rectal prolapse.
The meds are hard to get used to but
They do make a difference and can get your child back to normal everyday things.
Have you looked into EN?
Exclusive enteral nutrition or just supplementing with en?
We use peptamen jr with prebio first without food for 9 weeks instead of pred .
It helps the inflammation and helps kids grow
Later we kept him on three shakes a day to keep his calories up and increase his weight and growth.
He went from 25% for weight to 75%( which is where he was prior to getting sick)

He still takes crohn's meds but the formula really helps.


Read this
http://www.naspghan.org/user-assets...nteral_Nutrition_for_the_Control_of.29[1].pdf


Good luck

 

[chrisstoys]

Good gravy I cannot imagine what you are going through, but I do know that as someone being diagnosed with Crohn's, it can get better. I also know that dealing with a disease can also get better as my daughter was diagnosed with Juvinile diabetes at the age of two. hang in there and stay close to those who can give you support and keep close to sites like this that can also help you understand why. Good luck to you

 

[Jmrogers4]

Welcome Brianslovie,
I think what you are feeling is completely natural. We all want the natural solution to make it go away. My son was a few years older at diagnosis (10) but symptoms were quite similar to your son's. Like MLP I highly recommend enteral nutrition or even supplemental. We are on week 5 today of enteral nutrition for his latest flare instead of taking prednisone. I wish we would have done it earlier. He started as supplemental at the beginning of the year due to weight/lack of growth. He had been 77lbs for 3 years! within 6 weeks of the formula he had gained 23 pounds, and grew an inch.

Getting the Crohn's under control increases his odds of not having surgery or complications. The way I look at it and the doctor described it if we can get an extra 5-10 years before having a surgery or maybe even never having a surgery (I hope). I'll take the drugs and they allow him to live as a normal kid/teenager.

Hugs,

 

[David]

Hi there and welcome to the community. I'm so sorry to hear about your son. That's heartbreaking

The one good thing is you're in the right place. The parents here in this forum are truly amazing, extremely knowledgeable, and unfortunately know exactly what you're going through.

We're here for you.

*hugs*

 

[CrohnsKidMom]

Welcome to the forum! I am so sorry to hear about your son. My 8 yr old son was dx'd this past March. It is all so overwhelming, I know. The drugs my son was put on scared me as much as, maybe more than, the disease itself. But, options are limited and I know they are necessary. Fortunately, those scary meds have put him in remission, so we are now just praying things stay that way for a long time. Take care. I hope your son starts feeling better soon.

 

[brianslovie]

Here's an update on my son. He is doing great! Doctor says he's clinically in remission and he has but on 12 pounds since October! He is a different kid and I pray he remains this way for as long as possible!

 

[Jmrogers4]

That's fabulous news brianslovie, long may it continue.

 

[Mehita]

That's awesome!

 

[CrohnsKidMom]

Great news! So glad to hear it!

 

[LJS]

awesome news! welcome to the club that NO one wants to be a member of..but we are so lucky to have this forum and each other.

My son was diagnosed at age 6, after a year of no growth, lots of tummy aches and throwing up and odd fevers. He's tried all sorts of meds to get him into remission, as well as supplemental EN...and we are now starting the remicade train on Friday. I've wavered for as long as I can but he needs to grow, so ... fingers crossed.

This disease sucks, and it takes so many twists and turns, and no two kids' diseases look the same, but kids are so much more resilient than I think we give them credit for.

Fingers crossed that your son continues to stay in remission and grows and thrives.

Lin

 

[kimmidwife]

Glad the meds worked and he is doing better!

 

[brianslovie]

I still have many fears about the future. I know things could change next week. I fear the other drugs he may have to take one day. I fear surgery. I HATE that I can't just sit back and relax about this disease. I hate that he has to have it. I wish I could take it for him. I fear that my other two sons will develop it. Yes, he could have a disease or condition far worse, that could be fatal or lose his ability to function, but it's still hard to grasp. Not to mention the financial toll... we have insurance but still the price of drugs is crazy.

 

[DustyKat]

Thanks so much for the fab update brianslovie! :dusty: Long may it continue!

And {HUGS} to you mum. :ghug: It surely is a hard road to hoe watching those we hold so dear go through such struggles and knowing there is little we can do but hold their hands and hearts and do the very best we possibly can for them. :heart:

Dusty. xxx

 

[David]

Great update! I wish him continued success

 

[Brian'sMom]

I have a Brian too! My son was dx young also. Glad to hear your son is responding so well to the meds. Yay for remission!

 

[brianslovie]

Unfortunately, Azathioprine hasn't worked well enough. So we are going for our second dose of Remicade in a week. I'm sad because Azathioprine was "easy" and cheap. I'm scared that Remicade won't work and we will be on to injections (I can't fathom this). He's so young. As of his last endo/colonoscopy, he has inflammation and narrowing in his I valve, some inflammation in small intestine and some ulcers in his stomach. A roller coaster ride, indeed. :ybatty:

 

[Mehita]

Azathioprine didn't work for my son either. He's been on Remicade for eight months now and been in remission for seven. It's been wonderful. I hope it works well for your son, too!

 

[jamesmom]

brianslovie - I'm so sorry your son's condition is not improving. Hopefully, the remicade will do the trick. Just curious, what prompted the second round of scopes as he seemed to be doing well in February?

 

[kimmidwife]

I hope the remicade helps!

 

[my little penguin]

DS loved remicade - he started at age 8.
Movies lots of dad time - lunch in the hospital cafe treats at the gift shop.
DH and DS made a day out of it.
No extra blood work since those were done when the iv was put in.
It was great.

If you would have told me I could do the injections at home three years ago I would have said no way
But lots of practice , relaxation techniques bribery with iTunes movies and the injections go relatively well.
Also since remicade is a procedure at the hospital most cover it under major medical not the prescription plan
Check out remistart they help with any extra
Good Luck

 

[Jmrogers4]

In the end azathioprine wasn't quite strong enough for my son and has been on remicade for 7 months and is is remission and doing really well.
My son loves it. Remicade allows him to forget about Crohns except every 6 weeks when he goes for infusion and he watches movies, plays video games and like mlp says he has labs drawn then so only one poke.

 

[Farmwife]

Sorry I'm late to this show but welcome.
My girl is five but dx at three.
I'm with you on hating this disease. It's hard enough watching our kids hurt but also knowing these drugs are life long is never an easy pill to slow.
My girl is on injections of humira and methotrexate. The shots hurt but with the right kind of encouragement (shopping spree every twelfth shot:wink she takes it and life goes on.

I hope the new med helps quickly and your child is back to a new normal very soon.:hug:

 

[DJW]

I still have many fears about the future. I know things could change next week. I fear the other drugs he may have to take one day. I fear surgery. I HATE that I can't just sit back and relax about this disease. I hate that he has to have it. I wish I could take it for him. I fear that my other two sons will develop it. Yes, he could have a disease or condition far worse, that could be fatal or lose his ability to function, but it's still hard to grasp. Not to mention the financial toll... we have insurance but still the price of drugs is crazy.

Hi. I'm sorry to read about your sons diagnosis. I've had it for 36 years. It's great he's in remission. Today meds are great at getting inflammation under control. This reduces the chances of complications.

I had 20 wonderful years of remission. Done pretty much everything I wanted. Take it a day at a time. The parent group here is FANTASTIC!!! I hope my post gives you some encouragement.

Best wishes.

 

[Sascot]

Hope the Remicade works really well for him!

 

[Maya142]

Good luck! Remicade has been a miracle drug for so many kids, hope it works for your son! My daughter quite likes the infusions - it's a good chance to relax and watch TV (and miss a day of school!).

 

[brianslovie]

brianslovie - I'm so sorry your son's condition is not improving. Hopefully, the remicade will do the trick. Just curious, what prompted the second round of scopes as he seemed to be doing well in February?

His fecal calprotectin level started increasing so the doctor scheduled the second scope. And since his Azathioprine levels were therapeutic, apparently it is not keeping the inflammation at bay :/

 

[AZMOM]

Its so frustrating. Mine was young too. I will be hoping & praying the Remicade is the key!

J.