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Hi dodie......my son is 12 and also newly on 6 mp. We have been told that he will likely be on medicine his whole life and 6 mp is long term. He couldn't say forever because like others mentioned things change and may effect the medicine choices. If he had his colon removed he would be...

Interesting.....my son is new to 6 mp and has been sick twice and both times we were told to stop...well...once to stop until it cleared up...and once to delay ramping up from 25 to 50 mg. I found this odd given that the medicine takes so long to take effect ....seems like stopping would...

Interesting.......

Thanks bubbly....some good suggestions.....how do you alter the med times? Do you mean each time you change when he takes it? Doesn't that just change when he feels poorly? Does that feel beneficial in some way? Good luck on the surgery. Don

Kimmidwife Thanks or the tips! How's the LDN working? We plan on discussing it with our gastro

Good to know....I'll ask after the next Bloodwork ......it's next week.

It's definitely abdominal per him.............do you think they actually measure the amount of 6mp within his blood? I was under the impression that they reach his level by testing the liver enzymes to make sure they're not elevated and the white blood cells to confirm a small decline to...

Thank you......so far it's only happened twice...once after 6 mp was raised to what his level should be per weight and his Prometheus testing......and after that we stopped for a week to settle down and then re started at. Lower dose one week ago......we're waiting for Bloodwork in one more...

Anyone have suggestions for how to help my son during times of stomach ache? Matt has had two bouts with moderate stomach pain during the night.....usually several hours after his 6 mp dose. One put us in the ER overnight while out of town and last night he was simply miserable....stomach...

I tried to locate a local support group in Syracuse and couldn't find much information but I would think there are a lot of kids right here in central new York going through this ....it would be nice to get something up and running where local kids could get together occasionally in a group ...

Yes..we do go to upstate.......

6mp Johnny s mom, We are new to the 6mp regimen........when u say the WBC is not low anymore....is that good or bad? I thought 6 mp was supposed to make it a little low......also when you said his levels were still high do you mean his liver enzymes? We r having that issue as...

Much better..thanks for asking.....

Can I be in this mom club too? My son is 12.....and I'm a dad....but I'll let u guys call me Donna if it helps! Don

Hi Kay, Welcome to the forum and I too feel horrible that you and your daughter are going through this . Your story touched a nerve as we went through similar scenario with my 12 year old son, Matt. Aside from the joint pain that is. I am surprised to hear all that you were put through...

Lab work....grrrrrrr! I concur. The lab numbers are so frustrating...,especially since the labs all use different processes and consider different amounts normal. We just left the ER today after Matt had stomach pain, fever, headache....lab work all over the map but then our GI didn't seem...

Hey happy...this is interesting to read because in our case...this type of therapy was never suggested! We were told that steroids were an immediate need......my son is 12 and had severe ulcers in his colon from top to bottom......we are hesitant to use drugs and asked about diet...

Hi ...Cindy....I am new to this world as well...my son diagnosed in December 11.....I'm still gathering the information we need much like you but the one thing I would suggest is to stand up and demand the required tests happen ASAP. From my perspective it makes little sense to wait for a...

Well...he has been using the 6mp for about a month now..50 mg. for about 3 weeks.....blood work showed an elevation of liver enzymes although not huge...I think his number was 87...not sure which enzyme that was yet.....anyway....testing in 2 weeks to see if this continues and then I guess we...

Thanks Crabby crabby, thank you so much for the information...that is exactly What we were looking for information on.........we would love to hear more stories of success with 6mp if anyone has some......best of luck to you.......thanks again.