Looking for help

[Brynnden]

I knew this time would come, I always knew it and now that it is here my heart is broken. My 11 year old son looks like my husband, walks like him, talks like him and now has Crohns just like him, the major difference is that my husband didn't get sick until he was in his late 20's, he had a "normal",pain free child hood and I am so scared that my son won't.
I relive that moment when I heard the words I was living in fear of....."Mom, there is blood.", and though I try to be strong for him I just keep thinking that I don't know enough and that I can't do enough to help him. He can't eat, always small he is now down to 66 pounds,he says he wants to but when he tries he is in so much pain. He has no energy and can not do the things he was doing before, things that he loved and did very well. He has missed so much school, I think he is afraid to go, both because of the pain and because he never knows when he will have to run out of the classroom.
He was started on Asacol 18 days ago, and if anything he is worse now than when he started. We see the Peds Gastro again in a week and half, they have been wonderful, however they are 8 hours away from where we live so we feel somewhat isolated and on our own.
I just want to turn back the clock to a time when my amazing, kind, smart, talented, beautiful boy could eat a piece of toast without having to lie down for an hour to deal with the pain.
I want his pain to go away, I want this to have never have happened, but it has so I will ask you for help so that I can be there to help my little guy.

 

[Crohn's Mom]

Oh Brynnden....I am so sorry for you and your son.
Reading his story just breaks my heart

I'm wondering..Is there a pediatric GI that is local that you can use for the "in between" visits? 8 hours is such a long way ! I find myself complaining that my daughters doctors are a little over an hour away! ( I should count my blessings now!)

It sounds to me that your son will most definitely need stronger meds then just Asacol.
How long ago did you get the diagnosis ?
Have the doctors mentioned any other possible treatment plans for him yet ?

There are so many wonderful parents here that will support you, and help you, so please don't feel alone! There is a parents of kids with IBD sub forum that we all hang out in, so please feel free to post your story there so they can all meet you and help you along your path!

I wish the best for you! and the best of luck!
Hang in there mom!:ghug:

 

[xJillx]

Hi Brynnden and welcome. I am so sorry to hear about your little boy. I can only imagine what you are going through.

I agree with Tracy, is there anyone local that could see your son inbetween visits? Also, as Tracy said, Asacol may not be a strong enough treatment plan being that you think he has only gotten worse. However, some members on the forum have reported they did not react well with Asacol, but did better on a different type of Mesalamine drug. So, first, you could switch you son to a different brand to see if he improves. Then, if that doesn't help, perhaps it is time to discuss another treatment option.

 

[ameslouise]

Hi Brynnden and welcome.

It breaks my heart to read about your son - I am so sorry you are all dealing with this. As a parent, we just want to take our child's pain away, don't we?

If you haven't already made your way over to the thread for parents of kids with IBD, you'll find lots of great folks over there, very knowledgable and very kind.

Good luck - hope your boy starts to feel better soon - Amy

 

[Brynnden]

Thank you Everyone for your kind words of support!
My son and husband made the 8 hour trek down to Childrens yesterday to have an MRI, it kills me that I couldn't go with them but my beautiful little girl needs to have things as normal as possible while we go through all these initial testing.
The dr.'s did end up putting Kaed on Prednisone last week and the improvements we notice have been incredible! His pain is gone, and he is able to eat...for the first time in over two years he is saying he is hungry.....he actually wants to eat! I can see color coming back into his face, he is smiling again and 2 days ago he climbed a mountain! I know we have a long road ahead of us, but these little steps feel like huge leaps from where we have come!
I know that this medication is not something that he can be on indefinately but we will enjoy how he feels for now and then cross the next bridge when we get to it!
Thank you again for your support,
Brynnden