Moving right along. . .

[DMS]

out of the pediatric GI unit that is.

My son Mitch is 17, turning 18 in September and has to be out of Children's hospital by then, so today we had a transitional appointment with an adult GI and his nurse.
So, it's been a while since I posted on here about my son (been playing the games mostly) so here's a quick update.
Diagnosed in March 2009 at 15 - symptoms of abscess, loss of weight, multiple bm's through the night etc.
Colonoscopy in July 2009 confirmed Crohn's, MRI confirmed 2 fistulaes.
August 2009 started LDN, HBOT and SCD, did fairly well on this formula, healed one fistula, had a slight setback when LDN was compounded with lactose but otherwise CRP stayed around 10 - 15, which the GI was happy with.
March 2011, started having acidic BM's and spending more time in the bathroom in the AM, CRP stayed the same though.

After much discussion we decided to take him off of the LDN and start on azathioprine - the main reason - fistula had not healed after 2 years and was still draining considerably.
He started azathioprine in April and discontinued LDN, his CRP and platelet count shot up - so, apparently the LDN was doing something for him (good to know for the future). He was also started on cipro which got the acidic BM's under control very quickly.
The aza is finally starting to kick in (3.5 months later), his blood work showed that his platelet count was finally in normal range and his CRP is now 9, we are expecting it to continue to go down.
MY theory is that the inflammation needs to go down so that the body can work on healing the fistula, not the inflammation. His last fistula healed when his CRP was steady at around 3, hoping we can get it there again.

Mitch will be going to the new GI in 3 months to see if the aza has fully kicked in, if not he's talking remicade or humira, so lots to think about right now, not the least of this is my understanding is that in BC if you go on Humira pharmacare will only cover it for 1 year, after that it's our responsibility ($$$$$$$). But we'll deal with that when we need to.

Anyway, I was concerned about the transition to the new Dr, and I'm glad that it looks like we've got a good one - Mitch really liked him (probably helps that his nurse was young and oh so pretty!!)

 

[DustyKat]

Thanks for the update DMS!

Fab to hear that he likes his new GI and nurse...:wink: That's half the battle I reckon.

Also good to hear that the Aza is kicking in and doing it's job and long may it continue to do so.

We were at the same crossroads with Matt in December. If by the end of January the Pred and Aza hadn't done the job then Humira was going to be applied for. We didn't get that far and Matt's journey took a completely different path.

Every new turn gives you so much to think and worry about doesn't it? In the past 8 months I have thought and worried endlessly about each new problem and suggested solution that has arisen only to have it replaced by a new one! :eek2:

I hope the transition to adult services continues to be a smooth one and all goes well with Mitch and his Aza!

Much love, :hug:
Dusty. xxxxxxxx

 

[Dexky]

Since many meds are cheaper in Canada, I'm just curious if Humira is? It would cost about $6K/month here. Glad things are moving in the right direction for Mitch!

 

[DMS]

Yes Dusty, always something too think about - and second guess. Thanks for the well wishes for Mitch - I've followed your thread on Matt (even though I don't post much on here) and you've pretty much lived out my worst fear - having a second child with IBD, I over react any time either of my other boys get so much as a stomach ache.

Dexky - yes Humira is cheaper here, we were told around $40000 per year, so that puts it at 1/2 price of the US, not much comfort though when you don't have extended medical benefits. Mitch starts uni in the fall and I was looking into the benefits he can get with them and they're actually pretty good, they'll cover 80% of his prescriptions for $159 per year (plus tons of other stuff). Everything helps!