Update/ How is everyone doing?

[chefmommaof6]

Hello everyone,
Still somewhat new to the boards, since my 12 yr old son was dxed end of December. I try to check up on here about once a week atleast, now that the holidays are over and all our normal activities with school are in full swing for the kiddos. Just thought I'd post a thread to see how others are doing, that I might be able to keep your little ones in my thoughts and prayers, and to update on how things are going with my son as of late. He's been on the Asacol and budesonide since first of January. We tried a month of prilosec for his reflux pain, but that didn't seem to help so they switched him to protonix with two weeks of zantac as well to help in the overlap time. It seems to be helping. We also did a short course (one week, I think) of Prednisone, which seemed to help. We are working on getting all his labs and medical records to Cincinnatti to get in there for a review/second opinion on treatment recommendations in the next 6 weeks, hopefully. I've also been reading a book called Restoring Digestive Health, by Rubin and Brasco (apparently he's a GI doc here in Huntsville, who treats a good friend of mine with UC) She said the book had helped her, so reading it to determine if any of it will be helpful for our son. J (my son) still has headaches periodically and some pain, but it has went down considerably. What I'd really like to see, though, is him put on some weight. He has finally crossed the 60 lb threshold, though, so small victories, right? :ybiggrin: Overall, he's doing well; I know he's struggling with a little sadness that this is something he will deal with the rest of his life. I have been too, but trying to just take it a day at a time. The gluten free diet has been difficult too, esp. in social situations, but we are sticking with it through the end of February, then doing a challenge to see how he and I both feel. So that's where we are right now. Hope and pray the rest of you are having a great, flare free week.

 

[Devynnsmom]

Hello chefmommaof6, I'm glad to hear things are going well with J. I have heard the gluten free diet is very hard!
My daughter Devynn is 11 and has ulcerative colitis. She's been doing fairly well since November when her meds were changed. She is now on sulfasalazine and so far so good. She also takes a migraine preventative called sandomigran. That has been great too. She was having migraines numerous times a week, and within a week of the sandomigran they pretty much stopped. She has prob had 3 since Aug, and it was in a 2 week period where the meds were on back order.
I hope J continues to do well. Devynn also gets sad sometimes, but I just try my best to cheer her up. Sometimes it works, sometimes it makes her mad lol

 

[Niks]

Hey chefmomma

It is good to know that things are going well!! I hold on to stories like yours and hope that my daughter, and everyone else on here that is undiagnosed gets the tests and the diagnosis that can help them.

Haha Devynnsmom :rof: trying to make Devynn laugh, and making her mad, reminds me of ALL my kids when they were younger. Pretty sure I was THE most embarrassing Mum ever! :lol:

x

 

[Devynnsmom]

lol niks!

 

[CarolinAlaska]

I know how you feel, I've been right there with you. The GI doc thought Jaedyn, 13 years, had Crohn's from the first time we met her December 10, 2012. We had the testing done and I wanted every last test to be completed and see everything before I would accept that she has Crohn's. I was pretty down most of January. Right now we are finally doing something about it - we started EEN. The NG tube ended up being a very traumatic event for her and didn't ever make it past her throat. She decided she would drink the stuff instead. She has to drink 7 cans a day, and often it gives her stomach aches and occasionally diarrhea, but for the past two days she's been drinking more water with it, which really seems to help. We're going to try some different formulas next week.

Let us know how the book helps. My daughter and I both are gluten intolerant, and it has made a huge difference to get it out of her diet. I hope you find something that works really well too.

In the past Jaedyn had issues with reflux, but it was worse when she was in school and when she was on seizure meds (they always made her GI symptoms worse). Right now her life is pretty low-stress except for her Crohn's and she doesn't seem to have reflux. It has been better since she came home to homeschool last November.

 

[Dexky]

What I'd really like to see, though, is him put on some weight. He has finally crossed the 60 lb threshold, though, so small victories, right? :ybiggrin: Overall, he's doing well; I know he's struggling with a little sadness that this is something he will deal with the rest of his life. I have been too, but trying to just take it a day at a time. The gluten free diet has been difficult too, esp. in social situations, but we are sticking with it through the end of February, then doing a challenge to see how he and I both feel. So that's where we are right now. Hope and pray the rest of you are having a great, flare free week.

Have you tried any of the nutrition drinks like Boost or Ensure? Some are very tasty. My son likes the Boost High Protein chocolate ones. They can pack in quite a few calories. We've been gluten free for EJ since last spring. It's very expensive but he has handled it very well. Whenever we go to friends or family dinners, we just take his breads and treats with.

The biggest hurdle is getting them to feel ok. I know for you it's getting him in solid remission but for him, a 12 y/o boy, feeling good is everything! When you see him happy, you'll feel much better I guarantee it!…but you'll still worry,.. all the time!!

 

[Sascot]

Glad to hear things are going quite well. Hope things continue to improve and the pain gets less and less. Andrew is doing well apart from a little tiredness (and the fistula which isn't bothering him) and he has just started 6mp, so hoping the tiredness goes away.