Trouble Taking Meds

[twin_mommy2002]

I am new to the forum and seeking help with my son having problems taking his meds all of a sudden. He was diagnosed with Crohn's Disease in July 2013 (exactly one year ago) and was put on 6MP (50mg at first) and 500mg of Pentasa (1000mg in the AM/PM and 500mg in afternoon) along with oral steroids, multivitamin, zinc and iron. Then in January he was admitted to the hospital for a flare up. He was placed on a feeding tube until the end of March, had a blood transfusion, oral steroids again, 6MP (50mg and 75 mg alternate days), zinc and 400mg Delizcol (1200mg AM/PM), Pentasa was discontinued along with iron. He currently has been bumped up to 100mg of 6MP daily and flagyl twice daily but is having a hard time taking his delzicol. We are literally taking 2 1/2 hours to take his 3 pills in the morning and at night but no problems with the other pills.

Now I would also like to share some more of his story so everyone can truly understand what he has gone through. At the age of 5 he was diagnosed with retinoblastoma and had to have his left eye removed. Thankfully no chemo or radiation was needed! Then at the age of 8 he watched his twin brother get diagnosed with Crohn's Disease just in turn to be diagnosed 2 short years later.

We have talked with him in regards to taking his pills and what can happen. The doctor has even spoke with him, the next thing is seeing a psychologist, hopefully sooner rather then later. His feelings are all over the place.... he doesn't like that he will never be healthy (his words) and he doesn't like his disease (also his words).

Does anyone have anything that can help me and my son... this is a huge stress in our family right now and any helping words of ideas would be wonderful!

 

[Patricia56]

Delizcol is Mesalamine which has shown very limited benefit in treating Crohns. The 6-MP and flagyl are much more important to his continued remission in my just-another-mom opinion.

My frank advice is to tell the GI you are going to stop it for now. If his symptoms get worse then you can restart it and that may be the motivation he needs to get them down.

Are they like pentasa where you can open them and mix the contents with ice cream or applesauce? If so then you could also try doing that.

In my mom opinion, having also gone through hell getting a kid to take a med with little if any benefit, it's not worth the continuing daily trauma to him and your family. It could lead to problems taking the other meds and you do not want to go there.

Welcome to the forum by the way. You have your hands full with twins (I have boy girl twins with my son having CD) who both have CD and one with other challenges. It sounds like you are doing a great job and we are here to support and help you any way we can.

All the best

 

[MamaHenn]

I wish I had more advice to offer. We went through a complete mental block with my son when he started his entocort. He could take other pills the same size but absolutely could not take those. We had a hellish weekend of begging, pleading, punishing, etc. it took his teacher whom he greatly admired and looked up to, talking to him and bam! It worked. So my advice: think outside the box. Change of scenery, have someone he looks up to talk to him, and of course when all else fails bribery can work wonders. Good luck!

 

[Mehita]

Is this stemming from not wanting to take them? Or that they are too big/taste bad?

 

[Maya142]

Hi and welcome!
My daughter is older than your son, and doesn't have trouble swallowing pills, but her ped GI referred her to a psychologist just to help with the stress of dealing with a chronic illness (she has two- Crohn's and juvenile arthritis). She really did NOT want to go, and after much arguing, finally agreed when her GI insisted.

I'm so glad her GI insisted because it has been SO incredibly helpful for M.
This was the 3rd psychologist M had seen, and the fact that she worked with kids with chronic illnesses made all the difference (first two were no help at all - M said she would never see a psychologist again!).

Good luck! Your poor boy has been through so much, I hope he feels better soon.

 

[twin_mommy2002]

Thank you! We are working on it and unfortunately he has to swallow the pills whole as they are time delayed... he has agreed to see a psychologist which makes me happy. He has been through quit a bit in his life. But I would also like to try and find him a support group with kids around his age so he knows he isn't the only one going through this and hopefully my ped GI can help me with that.

 

[CrohnsKidMom]

Welcome to the forum. Your family has certainly been through a lot. I don't have any advice to offer about the pill taking, but I just noted to extend my support. My son was dx'd March 2013 and is now 9 yrs old, so is about your son's age. I hope you find some success with the meds and your son starts feeling better soon.

 

[my little penguin]

DS stopped taking asacol about 6-8 months again since we were not sure it was doing anything for him at the recommendation of the GI .
He was already on humira and lots of other rectal creams /suppositories probiotics etc..,
The thought was sometimes 5-ASA cause irratation in the gut of crohn's kids.
We found for DS it made absolutely no difference in symptoms whether he took it or not .

Second the kiddo psych it really helps DS to have someone to complain too that is not mom.
We try to give DS control as well . He doesn't get to decide what meds to take but does get to decide the order as well as what he wants to do afterwards .
He takes 15-20 pills a day -so this helps.
We aslo found a few kids who have crohn's or other chronic illnesses for him to meet with once in a while .
This helps him not feel different -too much .

Third thing is if he is balking at taking xyz I kindly explain that he needs to talk directly to the doctor ( Gi ) and explain how he knows more than the doctor about which meds he needs.
So far ds has not taken me up on it but he is still young so ..,