Looks like I'm in the right place

[shonda]

Hi,
My 10 year old daughter was diagnosed with Crohn's last Sept. She was in the hospital for 9 days, blood transfusion, colonscopy/endoscope, pic line for tpn etc. etc.

She is a fast responder to Prednisone, but after tapering, she flares again in about 6 weeks. We have been on the prednisone roller coaster for 11 months. Tried Asacol with no effect, 6mp with a bad reaction, oral methotrexate with no result and another hospital stay for another transfusion and dyhdration. She got her first shot of methotrexate in the hospital last Friday and home care from Children's hospital is coming out to us this week to teach us how to do it ourselves.

She hates it when I say this but, she is such a trooper. She is going through so much physically and emotionally.

Looking for support and information. Thanks so much!!

 

[Clash]

Yep, yep you are definitely in the right place!! Although, I hate you had the need to seek us out, welcome to the forum. Goodness, it seems as if your sweetie has been quite the trooper! Is she feeling better since the first methotrexate shot? Sorry, I really don't have any experience with Methotrexate, my son was put on Remicade after a prednisone stint that didn't really help at all. The pred was prescribed by diagnosing GI while we waiting for our Ped GI appt.
I really hope the shots do the trick for her!! There are alot of fabulous parents here with a wealth of experience and advice!! I am sure some of them will be by shortly to welcome you. Good luck with the new med!!:welcome:

 

[David]

Hi Shonda and welcome to the forum. I'm so sorry to hear about your daughter. That is heart breaking

You are indeed in the right place though! We have a Parents of Kids with IBD forum that is full of parents like you. They're an amazing bunch and I suggest you connect with them. I think you'll be glad you did.

I pray that the methotrexate does the trick for your daughter!

All my best to your entire family.

 

[723crossroads]

:ghug:Welcome Shondra,
This is a great place to be. Check out the kids or parents with kids forum too. Hope you get all the answers you are looking for. Teresa

 

[Thermo]

One positive thing to look forward to is there are exciting things coming in the treatment for Crohns so by the time she is an adult hopefully they will have something that works perfect for her. The forum is great you can really learn a lot but at the same time you have someone to lean on with all of the other parents on here. Good luck and keep fighting, there is hope on the horizon. Make sure you keep up on getting her vitamin levels checked she will need to be on supplements the rest of her life-probiotic, iron, b-12, D, etc. Make sure you change her diet when she gets a flare to something that is easy to digest. It's good she response to steroids don't be afraid to use them, as long as you try and get off them in remission and you have another maintenance drug they are a powerful tool, just be cautious as they cause so many side effects.

 

[shonda]

Thanks so much for the welcome! I'll pop over to the parents forum to connect, as well.
Thanks again for having this forum available. I'm sure it's a real life line to many, many people.

 

[DustyKat]

Hi shonda and :welcome:

Oh my, what a rough ride your girl is having and I bet you are spot on when you say she is trooper! Bless her...:hug:

I hope the Methotrexate weaves its magic for her and gives her lasting relief. Maybe you could try some Enteral Nutrition along with it to see if that might help boost her chances of getting into remission? It is not used to a large degree in the US as it is on other countries but could be a very good alternative to the Pred. There are loads of parents here that have or had their kiddos on it. Have a look at this thread...

http://www.crohnsforum.com/showthread.php?t=36345

and this forum...

http://www.crohnsforum.com/forumdisplay.php?f=161

Good luck and keep us posted on how things are going!

Dusty. xxx