UPDATE: Back from GI

[my little penguin]

Took DS to the GI for his rush visit yesterday (normal one was scheduled for end of June).

Ds is currently failing 6-mp. He still has stomach/urgency/mouth sores/5XBM a day. etc...

GI also noted he has "clubbing" on both set of toes from so much inflammation and malnutrition.:eek2:
GI is afraid he is in a mild chronic flare and if we don't improve things soon then we could risk damage. He has not been in "remission" since dx in Sept 2011.
We can't raise the 6-mp level since his liver went toxic last time. WE also added allopurinol. Still didn't help.

Overview of our options and what we chose incase it helps someone else.
1.) high dose /low dose 6-mp combined with allopurinol
-This made the GI nervous since DS's ALT/AST levels were in the 300's (normal xx-60) at 25 mg.
2.) Try another Immunosuppresant AZA (imuran) etc...
Since his liver didn't do so well the first time and his symptoms did not get to remission- no go.
3.) LDN- GI called up Penn State and talked to the head doc on the study there.Long story short they are seeing some success but no other centers have been able to repeat the results. Also the success has been in those who only need a "little bump" or nudge" to get over the hump.
I know people on here have had success so we kept that as option b.
4) Biologics- Remicade
WE are going to try it since QOL has been non existent since last Jan 2011. :ybatty:

GI agreed to try whatever we wanted but I just want him better
WE have tried in order:
Pentasa - 1 month
6-mp + EN - 9 weeks
6-mp alone + 1/2 Dose EN + Elavil-
6-MP+ Pred + 1/2dose EN- +Periactin
6-MP + allopurinol+1/2 dose EN
6-MP + allopurinol+ Asacol + 1/2dose EN to present


Scared about remicade - but at this point scared not to try.
They are putting us in the schedule but are waiting for him to finish his scope first so we have a baseline for later.

WE may have a scope next week depends if both docs can coordinate their efforts (peace treaties would be easier):hallo3:

 

[DustyKat]

Thanks for the update lmp.

I'm so sorry that all has failed thus far. I do agree with the way you are looking at this and QOL certainly is a big factor when it comes to making these heartbreaking decisions. I also agree with going down the biologic track at this point as chronic inflammation has it's own set of problems if allowed to persist.

I know this decision has been hard so I hope, everything crossed!, the Remicade does indeed weave its magic and give your dear boy his life back, bless him...:hug:

Good luck!

Dusty. xxx

 

[crohnsinct]

MLP - so sorry he has failed another treatment. I would have agreed that Remicade was a good option. I so hope this is his ticket to feeling better! If it works Remi will be your new best friend!

Thanks for posting the thoughts on the options...will be very helpful for us!

 

[Mark74]

I would do humaria over remicade since there is less chance of reaction sure to no mouse gene.

 

[my little penguin]

Thanks for the tip-
However, We did discuss humira with the GI.

Humira dosing is not really little kid friendly. just two standard pre filled doses.
The success rate is not as high.
If remicade fails that will be our next step.

Remicade allows the doc to tailor the dose to my kiddo and adjust as needed.

AS far as mouse protein in Remicade.
Ds had a RAST test specifically for mouse protein to determine if his bodies was producing antibodies to mouse. His bodies produces antibodies to practically everything else he has been tested for. Mouse however was negative.:ycool:

 

[crohnsinct]

LMAO! After Liv started Remi we got an infestation of mice in our house. Liv joked saying don't kill them...we are family!

 

[my little penguin]

:rof::rof::rof::rof:

too funny.
Ds of course is allergic to dog and cat-
I don't want him to know he isn't to mice since he may want one as a pet too.

 

[Mom2oneboy]

Sorry to hear the 6mp isn't working for him. At least you can feel good about really giving all the options with it a good try. Hopfully, the Remicade with work for him. There has certainly been a lot of success stories with it here on this forum.

 

[Farmwife]

:hang:
Oh, I hope every thing works out for Ds.
Such a shame for a little one to go through.
Your doing a great job of taking came of him.
Keep up the good work.
Your in my thoughts and prayers.
:soledance:Farmwife
:ghug:

 

[Sascot]

Hope the Remicade works wonders! Best of luck - sending positive thoughts your way :hang:

 

[izzi'smom]

@crohnsinc lol about the mice!

Such a tough choice...but I feel that the biologics deserve a chance...they turn many kiddos around. Agreed that Humira isn't kid-friendly-other than the loading dose dd took the same dose I do.
Hoping that this works for you! :ghug:

 

[Jenn]

Sorry to hear about 6MP failing. It's a tough call, but if you go Remicade I hope it works great and gets him into remission. Usually you have to fail Remicade before trying Humira anyway for kids.

Alex has had clubbing of his fingers and toes since before dx. They have minimized a bit since his worst malnutrition days, but his GI never seems very concerned about it though.

 

[Tesscorm]

Good luck with the Remicade. Such tough decisions But, just another 'success story' - a friend's 10 year old daughter was quite sick with crohns for months last year; she started Remicade in the fall and has been great since! Hope he responds as quickly and as well! :ghug: