My daughter is 11 just diagnosed with crohns

[hollym]

I need some help and suggestions. My 11 year old was diagnosed with Crohns and I'm having a hard time helping her go into remission. She is on an anti inflammatory and now the doc wants to start her on a steroid. She is on a dairy free gluten free diet. Any suggestions on what helps or works?

Thanks,

Holly

 

[theOcean]

Hello there! Welcome to the forum. You might be interested in checking out our Parents of Kids with IBD section.

Starting her on a steroid is pretty standard. I'm assuming it's prednisone? That usually does a good job of kicking people into remission.

Is she getting any symptoms right now?

 

[CarolinAlaska]

Hi, Holly. I'm sorry to hear about your daughter. There are only 3 ways that I know of to get a child into remission, but there are probably more: 1. Prednisone. 2. Exclusive Enteric Nutrition (essentially your child drinks only special formula/shakes for 8 weeks. or 3. Remicade alone. Once your child achieves remission (if using 1 or 2), you and your doctor should already be planning for a long-term solution to maintain remission such as an immunomodulator (such as azathioprine or purinethol/6MP) or a Biologic (like Remicade or Humira). By the time we got our diagnosis, I knew that diet alone wasn't going to do the trick for her as we had been trying to use diet for years unsuccessfully. We have found gluten to be a trigger for her, but unfortunately GFdiet hasn't cured her... We went the way of EEN + 6 MP and it was a hard road, but have found good results. Unfortunately not a cure.

 

[Jmrogers4]

Welcome Holly,
Unfortunately I have to second Carol, We've tried SCD, Paleo, Gluten Free. Some helped some but never to the point of remission. When my son was dx'd 4 years ago we did the Prednisone / Imuran route and saw pretty quick relief with the prednisone which gave the Imuran and chance to kick in and keep inflammation down. When he had a flare over the summer and refused prednisone we did the EEN (#2 above) and it worked as well unfortunately as soon as you add food back in symptoms return.
My son is now on Remicade (since January) and doing fabulous. I'm finally seeing the child I had pre Crohn's. He feels great, he's growing and gaining weight and has tons of energy (well most of the time he is a teenager)

 

[DJW]

Hi Holly. I don't have anything new to add. Sending you and your daughter my support and hope for quick remission.

 

[my little penguin]

Same here food did not cause flares but getting the right drugs are key.
DS used EEN + 6-mp in the beginning to try to avoid pred( still needed it anyways X2).
He has stayed on peptamen jr with food now to help with growth and weight .
He is at the top of the charts for both now thanks to formula and humira.
He has tried in the past pentasa, 6-mp, 6-mp + allopurinol, methotrexate, and remicade .
He also added rectal creams , asacol , and prescription strength probiotics as needed.

It really is trial and error since what works for one does not work for another .

Hope the pred kicks in soon so the maintenance meds have an easier time taking over .

 

[hollym]

Thank you for all your stories. They really help.

 

[Farmwife]

:hug: welcome avoid but sorry you had to find your way here.

You've been given great advice and I hope your girl is back to herself very soon.

 

[kimmidwife]

Hi Holly,
My daughter was diagnosed at age 11 too. She is now 16. Like the others said diet alone doesn't seem to work for this illness unfortunatly. They have already given you a lot of good information. I do reccomend going over to the treatment section and reading about the different treatments so when you go back to the doctor you are more familiar with what is out there and it will help you to make a game plan. Good luck and keep us posted!

 

[CrohnsKidMom]

Welcome, Holly. My son was dx'd just over a yr ago, at age 8. He was put on Prednisone and we started seeing immediate results. It took about 6 months to officially get him into remission, and he's currently on methotrexate injections for maintenance. Once we had a dx, we followed a low residue diet until he was in remission. It seemed wrong to cut out so much fiber, but it was easier on his tummy while we were trying to achieve remission. He ate a lot of softly cooked veggies, white bread, etc. We also removed lactose from his diet as it would cause him pain. All the best to you. I hope your gal starts feeling better soon!

 

[AZMOM]

hi Hollym - sorry you had to find us but glad you are here!

My daughter had symptoms for a few months at age 5 and was diagnosed just after her 6th birthday. There is no "silver bullet" that works on very kid....wouldn't it be nice if there was???

I'd suggest you do a lot of reading, "hang out" here and feel free to ask any questions, make sure you like the doc and if you don't or you aren't sure, get a second opinion!!! You have to feel good about the path you are on - as good as you can, anyway. And take it one day at a time!!!!!!

Yes, prednisone is pretty typical to get things calmed down. And then some sort of maintenance med (depends on lots of factors) to keep the Crohn's "quiet" so your sweet girl can eat, grow and feel good.

Let us know how we can support you!

J.