New to Forum - My son has Crohns...Imuran and Prednisone not working!

[sheryllyn]

Hi Everyone..
After searching on the web for a couple of hours I ended up here - probably a good thing as after reading some posts it really looks like some great advice is giving here.
My son who has just turned 15 was diagnosed with Crohns in March 2011. He has been taking Imuran ever since and we have just finished round two of Prednisone due to the fact that his symptoms returned 1 week later after the first round. He just finished tapering down to his last Prednisone (5 mg ) today and about 3 hours ago he had a terrible time. Lots of blood and pain...
Going to speak with the GI tomorrow but I am just wondering if anyone else has had the same experience?
Was searching around some web site and looks like Remicade is the next step but pretty scarey side effects for children...ie: rare lymphoma.
Thanks in advance for any help!
Sheryl

 

[xJillx]

Hi Sheryl and welcome! Some people do have difficulties weaning off predisone; I am sorry your son seems to be one of them. But the Imuran should be keeping his Crohn's in check after finishing the pred. Is he taking the correct dose of Imuran for his weight? Perhaps this is something to discuss with his GI.

I sure hope you son feels better soon!

 

[David]

Hi Sheryl and welcome!

I'm so sorry he hasn't responded well to his latest treatments A biological MAY be the next step, though I wouldn't be too surprised if your GI tries some other options first.

You may want to check out our Parent's of Kids with IBD forum as there are some wonderful parents in there who could no doubt help you a lot.

Please keep us updated as to what your GI says.

Good luck!

 

[Tesscorm]

Hi Sheryl,

I'm sorry that your son is suffering; it is so hard to not be able to just make things better for your child.

My son was diagnosed in the spring, he has just turned 17. He has been treated through an enteral diet. The initial six weeks was formula only (Tolerex), no foods, through an NG tube (feeding ran overnight and he was free of the tube during the day). Once the six weeks was finished, he continued on a maintenance treatment (same formula, 1/2 dosage, 5 nights per week) and is now allowed all foods. The success rate of inducing remission in children is comparable to steroids with no side effects.

Unfortunately, it seems that every case of Crohns is different so I am not sure if this course of treatment would be appropriate for your son.

I posted some additional information regarding my son's treatment a couple of weeks ago; this is the link:

http://www.crohnsforum.com/showthread.php?t=21664

I hope you are able to find a treatment that will bring some relief to your son quickly!

 

[vickyhunter]

Hi sheryl! I'm currently on imuran and was in remission on it for 6 years but hasn't worked for the last 8 months and I'm going on steroids for the 3rd time this year tomorrow.
I too thought remicade would be the next logical step for me, but instead my doctor is putting me either on a higher dose of imuran or taking me off it completely and putting me on pentasa which I'm a bit worried about as I don't feel pentasa could keep me in remission, although at a young age it is best to try to be on meds with the least side effects. I'm sure your doctor will try and give you the best advice for your son,

all the best,
xxxx

 

[sheryllyn]

Thank you so much for all the info!

Thanks for the great info all! I am really sorry to hear of all of your battles and struggles with Crohns.

I spoke with the GI nurse at length today and they have booked Robert in at Childrens Hosptial on Thursday at 3. As it turns out Roberts blood work that was done last week has some readings that are not great. Low Hemoglobin, high platelet count and proteins are high as well...now I am really scared and worried!!!

I will let you all know the results.

thanks again,

sheryl

 

[David]

Ugh, I can't imagine how scary that must be, Sheryl I'm so sorry.

I know these are mere words, but I'm sure the experts at the children's hospital will get him in tip top shape again soon.

*hugs* to you and your family.

 

[DustyKat]

Hi sheryllyn and :welcome:

I am so sorry to hear about your boy.

My son didn't have the same symptoms as your son but he didn't respond well to Imuran and Prednisone but it turned out he had other issues going on. I'm not sure about the proteins but the bleeding your son has would most likely account for the low haemaglobin and high platelet count.

As a general rule a failure to respond to treatment like Prednisone/elemental diet and Imuran would mean a step up to the biologics like Remicade or Humira.

Where is your son's Crohns located?

How much does your son weigh and what is his Imuran dose?

I hope they are able to sort things for you on Thursday and answer your questions. It is an awful time just now for you all, things are so new and scary and I bet you are feeling lost and as if nothing is going right...:hug:

:hang: Mum! You are doing just fine and remember we are here for you and with you every step of the way. If there is anything we can do then just give a yell!

Good luck to Robert and to you too hun. Welcome aboard!

Thinking of you, :heart:
Dusty. xxxxxxxx

 

[Dexky]

Welcome Sheryl! I can understand your reluctance about starting anything new, but I'd rather have a biological for my son than to see him unable to wean off pred. Tess's success with the enteral diet is worth asking about too I think. Good luck at Children's hospital. I wish you and Robert well!!

 

[Tesscorm]

I hope you get some answers on Thursday. Hopefully, they can get Robert on a clear course of action and get him feeling better!!!

I can imagine how you are feeling, seeing him not well and just 'waiting' for the next appointment. I've attached a link to the Wiki forum on this site. There's lots of info available in that area. The specific link below describes blood tests and their results. But, please remember, that sometimes the numbers seem 'severe' but aren't necessarily 'unusual' given the circumstances. i.e. C-Reactive Protein - should be below 5.0, I believe my son's was 190 when he was admitted to hospital, within a week it was down to 20 and two months later it was at 6. Without knowing 'usual' or 'expected' numbers, the 190 seemed unbelievably high but, I've since read of many others who have had even much higher numbers. So, it's helpful to know what these results mean, however, keep in mind they may be misleading to the layperson.

http://www.crohnsforum.com/wiki/Blood-test-codes-and-results-explained

Good luck! Let us know how Thursday goes... :ghug: