We have a plan!!!!

[my little penguin]

:soledance::soledance::soledance:

Met with Rheumo yesterday and Gi today .
All is well in my world.
All agreed DS is doing great and they are amazed.
The key now is to keep him that way.
So plan is to try and make it the six weeks.
If symptoms return before hand then to call right away and they will find a way to get him an infusion so he feels better .:medal1: - for the Gi who was great.
If we make it 6 weeks no change.:heart::heart::heart:
If not then blood work plus up the dose a bit for next time .
Things are really good :biggrin:
After a year I think we have gotten to a good place.
There is hope.

 

[Devynnsmom]

Thats great news!

 

[Farmwife]

:soledance:YA! Good for both of you!:soledance:


:heart::heart::heart::heart::heart::heart::heart:

 

[Patricia56]

Yayyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyy

 

[crohnsinct]

Oh MLP! So nice to see you in a good place! So glad things are settling in. Crossing fingers there are no blips before the 6 week mark!

 

[Jmrogers4]

Yaay! Here's to a great 6 weeks

 

[Twiggy930]

Fabulous news!!!!!

 

[AZMOM]

GOOD STUFF!!!!!!! :hippy::hippy::hippy::hippy::hippy::hippy::hippy:

 

[Crohn's Mom]

So happy to hear the good news !
So very, very happy !

:worthy::beerchug::worthy::beerchug::worthy:

 

[Ands]

So great to hear. Fantastic.
X

 

[upsetmom]

I'm so happy to hear things are good....:dance:

 

[Catherine]

Great news, so happy for you.

 

[Sascot]

Fantastic news! Cheered up my day a little. Long may it continue! :rosette1:

 

[Charleigh]

That sounds great!

I have a silly question ~ why do ya'll see a Rheumo?

Our general ped. referred us to both a pediatric GI and a ped. Rheumo but once we got an official Crohn's diag. the GI said we could cancel the Rheumo appt (there was a 6 month waiting list for the appt). I need to cancel the appt soon as it is the end of December. I see why I should cancel (GI thinks the joint pain is just Crohn's), but I thought I would ask before cancelling such a long standing appt.


I want this to be clear ~ I am not asking in a snarky, "why is that necessary?" tone. I am asking because I am curious if I should keep DS's Rheumo appointment or if your DS has an entirely different issue he is seeing a Rheumo for?

 

[Tesscorm]

MLP, GREAT, GREAT NEWS!!! You guys had such a long struggle, so very glad to hear all is going well!!!! Here's hoping it continues for a long, long, long time!

 

[Clash]

That is awesome news, MLP!!! So great to hear! Here's hoping for all good news to come!

 

[my little penguin]

Charleigh
We have DS see Rheumo because he has crohn's.
Gi's are mainly concerned with the gut so when they do the examine its a basic do your joints hurt sorta thing and maybe a movement of the legs.
Rheumo is all about the joints mouth ulcers skin issues .
So when they do an exam they can tell if there is more or less joint problems which is a factor in how controlled the Ibd is.
DS has a lot of EIM so Rheumo follows those.
Is on the look out to make sure the joint pain isn't getting worse or turning into something in addition to Ibd .
Aslo monitoring his vasculitis which is an EIM he has when his Ibd is not under control.
Personally I think all Ibd kids should have a Rheumo and an ophthalmology since those are two areas that can go south fast.

Hope that answers your question

 

[Twiggy930]

My son sees Rheumi due to enthesitis in his hip due to Crohn's. Enthesitis is inflammation where the ligaments and tendons insert into the bone. I would highly recommend seeing Rheumi if your child has any joint, limb or back pain. Our Rheumi has had the range of motion of my son's joints measured so that they can track any changes. In my experience GIs are oddly reluctant to refer kids to Rheumi, for the life of me I can't understand why.

 

[my little penguin]

Too funny same here-
Gi did not refer us but....
His optothamolgist , allergist , and nephrologist all recommended we see a Rheumo within about a day it so of each other when they found out he had Ibd.
The Gi didn't even recommend an optothamolgist ( allergy did).
Granted in our case allergy had been seeing him for over six years and the other only came in with the Ibd dx. So ...

 

[kimmidwife]

Firstly MLP I am so glad to hear the good news! Secondly interesting about the Rheumo we saw one here who said he does not feel like Caitlyn's joint pain is due to crohns. I could not believe when he said that. Anyway I let him do blood work and I will do the follow up but then I will probably have to look for a different Rheumo even though he has a really good rep.

 

[DustyKat]

YEEHAW mlp!!! What a fab update! I am sooooooo happy for you and your lad!

Onwards and Upwards! :heart:
Dusty. xxx

 

[jenstaci]

What is LDN??

 

[DustyKat]

Hey jenstaci.

LDN = Low Dose Naltrexone.

If you click on LDN it will take you to the wiki and if you click on Low Dose Naltrexone it will take you to the sub forum.

Dusty. xxx

 

[izzi'smom]

Fantastic news!!!

 

[polly13]

Fantastic news

 

[Suzysu]

Sorry I've been a bit slow on this!!
:sheep::sheep::sheep::sheep::highfive:
WHOOOOOOOP!! WHOOOOOOOOP!!
Glad things are good and here's hoping that the next 6 weeks will continue in the same way!! xx

 

[my little penguin]

Thanks everyone.
The key will be next Wednesday 4 weeks 1 day from last infusion which was when his symptoms started last time.

Thankfully he doesn't pay that close Attn to the calendar ( except for Christmas )
So ....
Just trying to enjoy the very good days and not go to that bad place.


I have my fingers toes and elbows crossed.

 

[Sascot]

Fingers and toes crossed for you too! :ycool: