Mom Freaking out...puting 11yr old son on 6mp

[majkofamily]

Hi All,

I am new to all this...I came to get some advice regarding medication for my 11yr old son. He was diagnosed with Crohns in Feb and immediately went on pred and pentasa. He tapered off the pred in May and of course now the symptoms are back. So doc now wants to put him on 6mp, 50mg/day. He is still taking the Pentasa as well. I am not usually one to go overboard with the millions of possible side affects of medications, but this one is definetly giving me a run for my money. The number one concern I have is the cancer risk. My concern is that says it is increased for young adult men. Also my family history of cancer is really not great either, have already lost my mother, father, two grandfathers and an uncle all before they were 65. So I guess I wanted to get some advice about 6mp and if the benefits outweigh the risks. Also I am not sure if he should still be taking Pentasa now that he is on 6mp.

Thanks for any info!!

 

[DanceMom]

My daughter is on the Pentasa/6-mp combo too (and still on Prednisone). Like you, I had my reservations. But recently I realized that the disease can be far more scary and unpredictable than the medicines.

One thing my daughter had trouble with is nausea from the 6-mp. To solve that I now wake her up at midnight to give it to her and she goes right back to sleep, no nausea.

I hope this is the right med combo for your son!

 

[Aforth]

Crohns is terrible thing for anyone to experience but for a child its extremely frustrating and scary. I was 10 when I was diagnosed and its extremely stressful for my parents and me as a child. I used 6mp for a long time and I never had any side effects. Did it work 100 percent, no, to be honest but it kept me somewhat calm. Recently my wife and I decided to get off it to try Cimzia alone and that didnt work. Now my docs changed it up. My recommendation is to try it and just keep a very close eye on it. They should be doing bloodwork regularly to watch liver enzymes. Every single crohns case is different and every patient reacts different so you just have to find what makes him feel better. Unfortunately its alot of trial and error and it takes time. Tell him to hang in there and stay positive!!

 

[majkofamily]

@ DanceMom, thank you for the reassurance! I feel better now knowing that the pentasa/6mp combo is not so unusal! Also thanks for the tip on the midnight dosing, he just started it on thursday night and so far no side effects but I know it is very early so fingers crossed!!

@Aforth, thank you for the advice! Yes we already have bloodwork scheduled for 3-4 weeks from now to monitor all his levels. I agree about the trial and error part! It is difficult feeling like he is a pin cushion and our kitchen counter looks like a pharmacy at times! But I just have to keep reminding myself that this will end well and hopefully we can find the right course of treatment for him that he can stay on for a long period of time.

 

[my little penguin]

your doc can help you decide whether he should still be on Pentasa or not.
Cancer risk - well un treated crohn's has a cancer risk as well.
Under treated or un controlled crohn's can be devastating and some times even deadly.

6-mp has been around for a very long time.
with monitoring it can help alot of kids with crohn's

You just need alot of blood tests to make sure his body is processing it well.
realize he may end back on Pred since 6-mp can take 3-6 months before it reaches therapeutic levels and can take over.

I wish our kids didn't have to deal with this but they do and the best thing is to get the inflammation under control as fast as possible and keep the damage from continuing.


after you have seen what crohns can do to a child- possible side effects become less of a concern since finding a drug

read the bottle of tylenol - scary stuff-
also look at the odds ( risk benefits)
odds of dying in a car accident ( 1 in 250)
drowning 1 in 1000

we take these risks with our children everyday since the benefit ar outweighs the risk.

The cancer risk is much smaller than this.

hugs

 

[majkofamily]

@ my little penguin, thanks for the advice and reassurance that we have made the right decision. i know all medicines these days have a laundry list of possible side effects...for me the freaking out comes from the cancer risk because of family history. I know that driving, eating, even crossing a street corner can kill you...i just dont want to be the one pushing him out in front of that "bus" by giving him the medicine. I do feel better though going through different forums and realizing that it will most likely be ok.
Thanks again for your perspective!

 

[Twiggy930]

Just wanted to let you know that my son (he just turned 12) has been on azathioprine (very similar to 6MP) since February 2012 and has had no side effects. For a while he was on both azathioprine and pentasa together and had no side effects from that combo either. He now takes azathioprine with sulfasalazine and it seems to do the trick for him.

Hope the 6MP works well for your son.

 

[Sascot]

Hi, my son has been on 6mp for just over 4 months now. I fought the decision for about 6 months but finally had to give in. So far, apart from some tiredness, my son has no side effects from taking it. He takes it about half an hour after his main meal and so far has no nausea. My son has no stomach symptoms which makes it hard to know if it's helping, but his calprotectin has come down since he started it, so that's good. Good luck with it!

 

[crohnsinct]

I totally understand your concerns. My family has a history of liver disease and both drugs my daughter is on can affect the liver. I fought one of them for over a year and finally had to give in. My daughter had untreated Crohns for two years and it was silently doing its damage. She was dx'd in ICU. I look at her today 5 1/2" taller and 22 pounds heavier and living a very normal productive life and the risk is very much worth it to me. But yes, if the worse happens I will probably feel guilty but really what choice do we have. We do the best we can with what we have. I am praying for a cure soon so we can pull all our kids off these drugs!

 

[majkofamily]

Thanks all for the responses! It has definetly eased my fears a bit! Its good to know there is somewhere to go to vent a bit and get friendly advice...it is much apprecitated!

I wish you all the best as well in this journey!

@Sascot, that is good to hear that 6mp is a success course for your son! I will take tiredness over crohns and any other possible side effects any day!!

@crohsinct-I am glad that someone else can relate to my fears of the side effects of the medicine where family history is involved. I can't agree MORE that a cure needs to be found asap to get rid of these drugs and possible side effects!!

 

[SJ!]

Hi, It is only natural to be concerned for your little boy You are doing the right thing by giving him the treatment anyway. :Flower:

Greg is supposed to be on imuran but he isn't yet because he has cancer! But as soon as he has his next surgery he will change meds to imuran. Our GI believes that if your body is absorbing nutrition then it can be better equipt to fight any other bugs that come along like CDiff etc.

Greg has been sicker with Crohns than he is now with cancer! I'm glad you voiced your concern here, and you feel supported, that is my experience too.

Let us know how he is going over the next few weeks.

 

[Mehita]

My son is ten weeks into Azathioprine (similar to 6MP) and doing well. No side effects to speak of. Like others, he takes it before bed to avoid nausea. Also, take care in the sun. There is a higher risk of skin cancer while on these drugs. So load up on sunscreen!

I fought the idea of stronger meds for a long time and because of that, my son was undertreated and ended up having a resection at the ripe old age of 12. Yes, there are risks for many of these drugs, but there are risks for undertreatment and no treatment as well. I won't even go into the whole mom guilt topic.

It's the kittens in a basket thing that some wise parent on the Forum described it as. The drugs all seem super scary until you see that they actually work, that your child is growing, and that they are healthy. Then the drugs look like a sweet basket of kittens and you wonder what you were so afraid of.

I hope 6MP works for your son... and if not, then you just try something else and move on. Good luck!

 

[DustyKat]

Hi majkofamily and :welcome:

I am so very sorry to hear about your lad. :ghug:

You have been given wonderful advice so I can only reiterate and tell you of our own experience.

You are so far from alone with the fears you have for the medications used to treat this disease. We bounce from one fear to the next and it never gets any easier. As one treatment replaces another in hindsight we wonder what we made such a fuss about and wish we could go back to the drug we once dreaded! Ugh!

As mlp has said, untreated or under treated Crohn's comes with its own set of risks and from our own experience I can only advice to never trust inflammation that is left to own devices to simmer away.

I have been in the situation of seeing what untreated Crohn's can do and we very nearly lost our daughter to it, she was undiagnosed at the time. I will admit that after that I grabbed gleefully with both hands anything that would stop that from happening again, no questions asked. :eek2:

Both of my children take the parent drug of 6mp, Imuran. They have been doing so since their respective surgeries and have not experienced any issues with it. My daughter has been taking it for 7 years and my son 2.5 years and they have their bloods monitored every 2 months.

Please have a read through his article as it will hopefully help put things into perspective for you at this very difficult time:

Balancing the Risks and Benefits of Treatment For Inflammatory Bowel Diseases.

Good luck mum and welcome aboard!

Dusty. xxx

 

[DustyKat]

Oh and Matt has not long had a consult with a new Gi and he recommended that he start Pentasa.

I did question it, not because I am concerned about the drug itself as I feel it is quite inoffensive in the scheme of the things but more about just how effective it is for Ileal disease and for Crohn's in general.

Both of my children would be considered at high risk for relapse and the GI looked to this as a reason for adding the Pentasa. He was able to pull up studies that pertain to my son's situation, that being it's use following resection, so I was happy to add it.

The GI's words:

Given the factors listed the post op recurrence rate in this young gentleman is quite high and any percentage benefit that we can get by adding an agent in his case is worthwhile.

Dusty. xxx

 

[dodie74]

My 10 yr old son is also on 6mp and mesalazine. I was the very same at the beginning and cried the 1st time I gave it to him but so far he has been fine on it and this is us on 3rd year of it now. I give it to Kian just before bed and he has no problem with sickness either. Like Sascot ,my son doesn't have any stomach pains etc so its very difficult sometimes to know if its working well, his last calprotectin test was 600 but reading on here I don't think its overly high and his ibd team are happy with him. Good luck with the meds and I hope they work well. xx

 

[majkofamily]

Once again, thanks everyone for all the advice and comforting!! So far, so good with 6mp. He has had a couple bouts of nausea..one even woke him up in the middle of the night but overall things seem to be going ok. Just have to wait and see now how effective it is for him....going for blood work in a few weeks so fingers crossed!!

 

[DustyKat]

Thanks for the update majkofamily. :ghug:

Normally when a drug like 6MP is commenced weekly blood tests that include FBC and LFT's are done for the first month to catch any potential side effects that may occur with White Cell Counts and/or Liver Function. From what I am reading they haven't set down blood tests for you for some time, is that right?

Dusty. xxx

 

[majkofamily]

His last round of blood work was in mid-June. They have him set up to go again in 3 weeks to start monitoring his numbers while taking the 6mp.

 

[DustyKat]

I don't want to sound alarmist as I am sure all will be well but the bloods should be done sooner than that. :ghug:

Dusty. xxx

 

[Catherine]

This is just our example my daughter has been on aza for 17 months. Had blood tests every week for the first 6 weeks when starting aza. She has just increased her dose to 150mg and is having blood tests every two weeks.

 

[majkofamily]

@Dusty & @Catherine- Thanks for all the feedback...it is helping me figure all this out a little better...I think!
I was actually thinking the same thing, that he should be tested sooner, but they sent me the order to get the work done at our local hospital and it says on there to go in 3-4 weeks from the start of 6mp (which was 7/18/13). Also, looking at the forum here, I have a couple other concerns regarding testing. He has never had a stool sample test, for calprotectin I believe. Fortunately his symptoms have not included blood in the stool, that I know of. I think these may be some points that I need to bring up with the doc or possibly even start looking for a new doc.

 

[DustyKat]

The calprotectin is an inflammatory marker majko, so blood is not a indicator of needing the test done. It is specific to bowel inflammation only so is superior to blood inflammatory markers in that respect, because whilst they test for inflammation that inflammation could potentially be present anywhere in the body.

Dusty. xxx

 

[Farmwife]

Hi from up here in Michigan.
Not much advice to give. Just wanted to say welcome and hope your boy starts down the road to remission soon.

:hug:

 

[Dutch941]

Hi Majko.....welcome to the club..
I too was introduced to this affliction when my son was 11. We are in the ulcerative Colitis club, however, and luckily not crohns....
We too took prednisone first along with pentasa and 6 mp was next. I also was quite worried about 6 mp. Taking both is no problem at all...they work separately and n different ways...pentasa releases in the colon and is more of a soothing effect on the inner linings....the 6mp tones down the immune system which is causing all of the inflammation in the first place. My suggestion is to follow the lab work closely. In our case we had no Apparant side effects but the blood work revealed his liver was not ale to process the 6 mp and his AST and ALT were always high. For us, we took him off and for the last year pentasa has been doing the trick. I do remember being alarmed about cancer. Our doctor was adamanant that it wasn't a serious concern, but did advise to utilize suntan lotion and avoid sun exposure while on it.
I would do some strong research into LDN as well.
Also you can get a Prometheus test to identify if our child is prone to liver issues from 6mp....it evaluates how his body is processing the 6mp and it will give you a value.....if your value is below (I think 5700) the risk of liver issues is low...if it is above..then the risk is high. We were slightly above and then did have liver issues.
Hope this helps.....