How do you tell Imuran side effects with 4 year old

[thats us]

Hello all,
Just thought I'd introduce ourselves....I have had Crohns since I was 19, now heading for 29. Now my 2nd little boy has finally been diagnosed with Crohn's after suffering with 7 perianal fistulas in the last 3 years (now almost 4 years old!)
he has had a lot of Flagyl, Ciproflaxacin and Keflex in the past - now on 2nd week of Imuran. Still on Flagyl......
I haven't had Imuran myself so cant imagine how he feels - can someone tell me how they feel???!!!
Since starting on the Imuran, he is totally hideous! Like I love him to pieces and am breaking up inside having passed on this terrible thing to my little one, but I'm at my wits end to know what to do with him!! He is so grumpy, argumentative, hits into me...etc! It is a terrible struggle (Literally needs to be held down by 2 people) just to get the medication in!
He has hardly any appetite, complains of feeling sick all the time...... does this pass after time?
I actually want to sit down and bawl with him.......but.......I have to be strong to help him thru it!
My mum was my big support when I was diagnosed....I have to be the same for him, but man its hard when he is so grumpy! it just makes me feel so guilty having passed it on.
Any suggestions anyone??? I wish I could take it all away & have a double dose of the disease myself than watch him suffer.

 

[crohnsinct]

Hi that's us and welcome. Sorry you have to be here but it is a great community of supportive, understanding and knowledgeable IBD parents.

I am so sorry your son is having a tough time. He is a very lucky boy to have such a loving mommy and your experience with this disease will serve him well as you have an understanding that far surpasses that of us who don't.

I am sorry I have no advice on the meds and the temperament as my daughter has not been on that med. She is on Remicade which I understand is excellent with peri annal disease. I can only imagine feeling so poorly is probably affecting his mood eh?

Does your clinic offer any psychological support. A little play therapy with a therapist may help sort out his feelings about what is going on and help things along.

Might I encourage you to re post this introduction in it's own thread so you may get more views and targeted responses. Perhaps a forum monitor type person can take this exact post and move it for you.

 

[Jmrogers4]

Welcome thats us,
Imuran can cause nausea. When my son was on it we gave it to him at bed time so he would sleep through that side effect.
It's tough my husband has Crohn's but my son was diagnosed at 10 years old so it was a little easier to reason with him regarding his meds. Crohnsinct had a good suggestion about a little play therapy.

 

[upsetmom]

Hi thats us

I'm sorry to hear about your little boy..:ghug:

My daughter had a lot of nausea, vomiting and fatigue when she first started Imuran.

I gave her anti nausea tablets to get through the first few weeks. I also gave her the Imuran just before bed so the worst of the side effects would wear off by the morning.

Hope he feels better soon.:ghug:

 

[Farmwife]

Hi and welcome.
My little one is 4.5.
She's on different drugs so I'm no help there.

Blood draws seem to be her pushing point. She will stay still but screams. It breaks my heart. I feel for ya.

How old is our guy?

 

[thats us]

Hey Thanks everyone for your kindness - this is a great site - so much support!!!
When he is admitted, there is play therapists on hand, but we are living in a fairly rural little town, so are 7 hours from his hospital & clinic in Sydney. I am starting a play group with some other Mums for a bit of normality!!!!!! nothing like a distraction!!
He slept thru last night - I put the tablet in some chocolate yoghurt, and he had it without knowing, just before bed! So that was a good experiment!! Obviously eased the nausea and saved the fuss when he didn't realise he was even taking it!! May that last....!! you've gotta break some rules to fulfil the requirements ay!
Blood work is dramatic ay !! we finally found a good paediatric pathology nurse and ask for him every time now. We have to travel further to the pathology centre each week, but so worth it getting the vein first time, and not having to "dig around"!!
Thanks again everyone!!! Sooo appreciated!!
hugs all round.....:ghug:

 

[my little penguin]

welcome
have you seen buzzy bee?

that sometimes helps with blood draws
http://buzzy4shots.com

Ds was 7 at dx.
6-mp was not enough for him so he was switched after 8 months.
We are not sure how much of the drug caused the nausea or disease that wasn't under control.

 

[DustyKat]

Hi thats us and :welcome:

I’m so very sorry to hear about your little guy and the problems he is having, bless him. :heart:

My two are much older but they both are on Imuran and have been for some time now. I have not heard of behavioural issues being associated with Imuran but that is not to say couldn’t happen! Nausea can certainly be a problem for many and is usually best treated by taking the med with food and not long before bedtime so that the nausea is slept through…I see you have already cracked the code! Well done!

Are you on fb? There is an Aussie parent’s support group there now with most being from NSW and Queensland:

https://www.facebook.com/groups/Parentsofaussieibdkids/

I too am in rural NSW and about 7 hours from Sydney. We are in the north west.

Good luck and welcome aboard!

Dusty. xxx

 

[polly13]

Hi that's us and welcome so sorry to here about your little boy. His presentation sounds like my little girl Lucy (she is now 5 and was diagnosed at 2) - her main presentation has always been perianal. She has been lots of different meds over the years, 6mp(1 year), prednisone, flagyll, cipro (as required) infliximab (failed), every cream and dressing known to man !! and currently humira, methotrexate and cipro and finally we have something that's working. She had never experienced side effects like you describe from medications but I have certainly seen her display behaviour like you describe and it coincides with how bad the crohns is making her feel. I think with Lucy she sometimes gets totally overwhelmed by having to take do much medicine get injections etc, she totally acts out with frustration.

Lucy used to be really hate her bloodwork aswell for us the key was plenty emla cream , bribery and the same doc doing the blood draw every week so she could trust them, I also found explaining to her about her crohns, her medicine and why she needed her bloods done really helped with her accepting it needed to be
Done
If I can be of any help let me know
Polly