Help 6mp a mother of an 11 year old

[kad1435]

I am a mother of and 11 year old boy that was diagnosed with Crohn's disease when he was 5. He is now on 6mp and his blood tests have been great until this last one. His 6mp level was 7700. He is tired all the time and can't focus. He isn't running to the bathroom and hasn't been for a while now and there's no pain. Does anyone know if I can cut down on the 6mp? Has anyone done this? His doctor wants to do a colonoscopy, endoscopy and MRE, I'm not too keen on doing this? Her next step is Remicade and not sure I want to put my 11 year old 68 lb child on this.......HELP!! need some answers

Anyone gone Holistic? Herb, Vitamins, diet, NAET, Acupuncture, Chriropractor

Help in any way!!!

 

[Johnnysmom]

My son was diagnosed at 11 and put on 6mp as well. He had some issues in the beginning with his levels being high, some bone marrow suppression and liver effects. They cut his 6mp dose in half and added allopurinol. It is not completely uncommon. My son was on this protocol for a year and a half and it worked great. When we moved to Cincinnati his new GI wanted to try a switch back and we did but we could have stayed on the reduced dose.

Hopefully, your son will be able to stay on 6mp a while longer but Remicade has been a miracle for lots of kids on the forum.

I personally would not go holistic unless I found nothing else was working and I had nothing to lose. Once your son is grown, he made decide the holistic route but right now he is growing and his brain is developing. These drugs seem awful but without 6mp my son stopped growing and was losing weight. Since starting 6mp 2 and a half years ago he has grown 8 inches and gained 60lbs. I have to believe his body is better off on these drugs as much as they scare me.

Hang in there momma!! ((((Hugs)))))

 

[SarahBear]

Welcome to the forum! Sorry you've had need to find us.

Unfortunately, your best bet in this case is probably to follow the GI's advice. Please don't alter his medication without first consulting with his GI. Why are you opposed to doing the tests? Most likely, they want to better determine the current severity of his condition, so they can make a treatment plan tailored to his situation.

I agree with Johnnysmom - I wouldn't go holistic now. If you can get your son into remission, it would be easier and safer to reduce his medications and use other treatments instead - all under the care of a doctor.

Have his vitamin levels been checked recently?

 

[Jmrogers4]

When were his last scopes? While we never enjoy them as his GI says sometimes the only way you can see what is going on is by looking. We would traditional having something - scopes, pill cam, MRE every 3 years to check what is going on.
My son also did the Imuran (sister drug to 6MP) and allipurinol combo with good results unfortunately for us it just did work quite well enough as we had virtually no growth and no weight gain for 3 years.
He has just started on remicade we have our 3rd loading dose on Thursday and trust me I drug my heels and did not want to go there but then I didn't think he was very bad off (at least most symptoms-wise, just that lack of growth/weight gain); he also had no appetite and it was constant nagging to get him to eat as he just wasn't hungry. Remicade has changed all that, he eats constantly now and is gaining weight. I'm confident the height will follow. He also said he didn't want remicade so we tried a bunch of stuff to avoid it but now he says it is the best medicine ever.
So I guess what I'm saying is try to keep an open mind and what you thought was he's doing pretty well can be so much better.

 

[my little penguin]

My son was dx at age 7.
He was on 6-mp for 8 months and we had to add allpurinol /cut the dose but never got back to a good point.
The colonoscopy is need to determine the amount of damage that is really happening since crohns can be silent.
If you don't agree with your doc then get a second opinion Ped GI but again most are going to want to do tests to figure out where your child stands.

As far as 68 lb 11 year old - my child was 8 years old and I think 60 lbs at the time he started remicade. It was a true miracle for him.
He started to really grow and gain weight. He is now a healthy weight and height for his age at 70% at age 10 from 25% at age 7.

Good luck.