I am worried again

[steveh]

So Will has been doing really well for the past couple of weeks, until last night. He really worried me while we were out to dinner. Out of no where he had me rush him to the bathroom saying he was going to be sick, and he WAS! we spent about 5 minutes in there, and he kept vomiting and heaving. it was aweful. Today, he seemed to be better, but we kept him home from school just to be safe. we also got the results from his Prometheus lab work back, and he has a low enzyme threshold. I was unable to talk to the doc, so I am unsure what that means. He does, however, want to start him on the imuran right away, but he is lacking 2 vaccinations from his 4 year visit that he still needs. It seems that everything is coming to a head right now, and there are too many decisions to make. He can't get the vacs while on the prednisone, for fear that he could catch the illness in the vac, but if he doesn't get them now, he absolutely cannot get them while on imuran for fears of getting terribly sick. Have any of you been in this boat? He has just been doing so well, and now the thought of changing things and him potentially getting sicker is scaring the crap out of me. I know he cannot stay on the steroids, but I just wish he hadn't been so sick at his 4 year. That was the reason he didn't get the immunizations then, and with him getting progressively sicker over the next few months he still did not get them, and now he does, and we have to change his meds. This SUCKS!

 

[DustyKat]

Hey Steve,

I'm so sorry that Will is going through this, poor little guy and so, so hard for you and your wife...:hug:

No enzyme activity puts someone at serious risk of the side effects of Imuran, low enzyme activity puts you at risk of the less serious side effects. It will be something the doc will have weigh up in Will's case and he obviously feels that it worth a try. Will will be closely monitored via frequent blood tests so they should be able to jump on things quickly if the Imuran isn't agreeing with him.

Here is an article David posted about immunisation and Crohns disease...

http://www.crohnsforum.com/showthread.php?t=17295

You're right Steve, this disease sucks big time! As parents we are forever stuck between the devil and the deep blue sea...:voodoo:. I haven't had to face what you are going through right now mate and my heart goes out to you. Sending you all the luck in the world mate...

:goodluck::goodluck::goodluck:

Much love, :Karl:
Dusty. xxxxxxxx

 

[Saphira]

Yep, I agree it sucks, Hang in there. i don't know anything about the enzyme so i can't help there, but there are lots of people here that can help. Just know you are not alone
Trina

 

[Crohn's Mom]

Hi Steve,

I'm so sorry to hear your little one is so sick. I know it's terrible for you to watch and feel so helpless

I just wanted to tell you that my daughter recently had surgery and continued on prednisone post-surgery, she was also on 50mg 6mp pre-surgery. When she went for her post-op check (4 weeks later) her GI doc ordered her 2 vaccinations that she needed for college admittance. I asked about the possible problems because of the meds and he said there was nothing to worry about and that you can receive vaccines while on Pred and 6mp, but definitely not while on any biologics. She received both that day with no side affects or problems afterwards.

Hope this information helps and I hope your baby feels better quickly !

 

[steveh]

Thanks everybody. I managed to talk to all of Will's docs yesterday, GI, ID, and his general pediatrician. They all had a phone conference then got back to me. Apparently Will can his vaccines while on his low dose of pred. So, today he will be getting those, and the GI is starting him on the Imuran next week and we will continue to tapper him off the steroids. He will be getting a blood test every 2 weeks to make sure everything is going well, and if his numbers stay the same after a few tests then the doc said we can extend the period between testing to 1 month. Luckily though, his nasty stomach bug is gone, and now he is acting like the old wild Will. By the way, thanks Dusty, for posting that article. Good read! Trina and Tracy, thanks to you too for keeping me positive. I have never been a worrier, ever, and now I am, and this worrying stuff is AWFUL! Thanks again

 

[Saphira]

Thats a relief. I hope things go very well for Will.
Trina

 

[Dexky]

Glad Will is feeling better Steve! I hope the Imuran works well for him! When it comes to my kids, I have always been a worrier! Talk about magnifying that!! Efffing crohns!!!

 

[DustyKat]

Thanks for the update Steve. It's good to hear that Will is feeling better and you have an action plan! I hope it all goes well mate, fingers and toes crossed for ya!

As to the worry...well...that's been my middle name for a long time now, that's why I started the worry club here! :lol:

Dusty. :hug:

 

[Crohn's Mom]

Hi Steve .. glad Will's feeling better and getting over his stomach bug

I wanted to tell you, I took Gab for her first Cimzia injections yesterday. The nurse informed us that her blood tests showed that she has not been vaccinated against Hep B (even though she had a series of 3 shots previously), so she has to get that vaccine before going off to college. Again, I was worried about this since now she is starting a biologic and everything I know says NO NO NO vaccines. Well, come to find out...it's no LIVE vaccines. The others aren't a problem. (Hep B and others aren't actually live) It's those vaccines that can cause the problems if the person is on an immune suppressing drug.
So I found this interesting, and thought I would share that with you. Maybe it will help in the future with his shots that he will need