Mom of child newly diagnosed with Crohn's

[Dearie]

I have been checking out this forum for a few days now and just decided to join because I love the support and information available! Still not sure how to fully use the site yet, but I'm sure I'll get the hang of it soon. Thanks to everyone for sharing!!!!

My 9 year old son was just diagnosed Crohn's last month after having a few bouts of vomiting, weight loss and a couple months of a progressive decrease of his usual energy level. He also had a history of surgery of an anal fistula at age 5 but wasn't diagnosed with Crohn's at the time. Now after almost a month of Pentasa, antibiotics, Prilosec, Ensure 3x a day, an iron supplement and lots of prayer he is feeling great, gaining weight, and experiencing no active symptoms...

......But, he has his first follow up visit with his GI doc on the 24th and I want to know if there are any suggestions of topics I should be sure to bring up at this visit because this is all so new to me and I would love to keep him in remission as long as possible. His doctor has recommended we start Azathioprine, I am very reluctant to start him on this because of the side effects. I would love to hear of other treatment options that have worked for others that may work for him. Also, is there any other helpful information I should make sure to inquire about to help us along this journey

Again, thanks for sharing:thumleft:

 

[Angrybird]

Hello Dearie and welcome to the forum. I am sorry to hear your son has been diagnosed with this disease, it cannot have been easy as a parent to see him so poorly :hug: I am glad that he is feeling better now though. How do you feel about the current regime he is on, would you be happy to continue with this? Has the doc said why they have mentioned Azathioprine considering it seems the current meds are working? If not then this is a question to ask at the appt.

I think one place you should definetly go and have a nosy around is our parent of kids with IBD forum, there is a great bunch of people here who can definetly advise on what things they asked on that impotant first appt: http://www.crohnsforum.com/forumdisplay.php?f=49.

Sending best wishes to you, your boy and your family.

AB
xx

 

[David]

Hi Dearie and welcome to the forum I'm so sorry to hear about your son. That must be so hard, my heart goes out to him and your entire family.

I'm pleased to hear your son is already on an elemental diet. Did you do that or did your GI recommend it?

I can understand your concern about putting him on the Azathioprine. That your son has fistulizing disease is of course a bit concerning though. I can understand your doctor's desire to put your son on a stronger medication since that's the case. Yes, Azathioprine can be scary but so can what happens as a result of strictures, abscesses, and fistulae. IF you lean towards using Azathioprine, you can get your some a TPMT test which can help determine if he's more likely to get serious side effects. In addition, if they monitor his blood levels weekly, then they can catch most issues before they become serious.

It's a hard decision though, I feel for you.

*hugs*

 

[Dearie]

Thanks, I had not heard of the TPMT test but I will inquire about it and it's accuracy. We are awaiting results of the prometheus prognostic and I heard that the results of it may or may not be accurate.

Yes, our GI recommended starting the ensure 3x a day and my son is doing well with it.

Our GI did mention the reason she wanted to start the Aza is because of the past fistula and a possible stricture she found when doing his colonoscopy. But, I'm still nervous about starting it since he seems to be progressing fairly well without it as of now. I'm more inclined to try EN treatment before trying Aza though I"ve heard it is a difficult treatment to follow.

Thanks for you suggestions and comments

 

[Dearie]

Sorry, my son did already have the TPMT test...I just couldn't remember the name of it. His results were fine for him to start the medicine.

 

[David]

It sounds to me like you have a thorough and very good doctor. I can understand you wanting to try just the EN treatment. Just keep in mind that stricturing, fistulizing Crohn's Disease is very serious and most flare back up when they come off EN unless they engage in an extremely strict elimination diet. I'm not trying to talk you out of just the EN because frankly, I might do the exact same thing in your position, but he needs to be closely monitored to make sure he doesn't have low levels of smoldering inflammation making the stricture worse or leading to abscesses/fistula. I'd also be checking things like his vitamin B12 and vitamin D levels and making sure they're good and high.

 

[marjory2020]

Having a child with Crohn's can be so tough, you've come to the right place! The one thing I will add is to make sure you don't neglect your own self care while supporting your child. Obviously you want to do everything possible to make sure he gets better, but pencil in an hour a day just for you. It'll keep you sane and also make you a better caregiver, ultimately! You are such an angel for loving him so much!

 

[Dearie]

Yes it is tough and coming here does make things feel a little better. Thanks so much for the encouraging words! Praying for everyone!!