Proceed to Defcon 2. This is not a drill.
We arrived at the paed’s rooms.
Actually, this story starts about fifteen minutes before when the receptionist called to let me know that there was a parking space available just for little old me. I wanted to ask, why are you being so nice to me but I just thanked her and proceeded to our destination.
So, all tangents aside - the paed.
He was good.
He was thorough.
He was kind.
He is almost back to demi - god status (Kelley).
We have a plan.
And we all know how much the nursey control freak in me likes plans.
Where do I start?
What do I tell you first?
The immunologist had given her thoughts, which went along these lines;
Sounds like immune deficiency,
Looks like immune deficiency,
Smells like immune deficiency,
Must be immune deficiency.
But what kind and how will we treat it?
We have a complication of an auto immune response (blisters) but what is it and how will we treat it?
Could it be related to the Ectodermal Dysplasia that Immy and David have. If so, how do we treat it?
All these questions.
Without definitive answers.
She agreed though;
No more biopsies.
No more surgery.
No more inducing of painful blistering just to see if it is an auto immune response.
It is.
Full stop.
And our paed is on board!!
He agreed to pushing the prednisone back up for now. Three days in and Ivy is blister free once more.
And happy.
We are weaning off the Erythromycin and starting Bactrim (to help with her diarrhoea) and to help boost her immunity.
Next week we will see the Pemphigus guru and then see the paed at which point we will;
lower the pred and put her on some other form of immune suppressant.
No more pussy footing around.
The immunologist also suggested a trial of IVIG which is a plasma based medication to support her immune system.
This is the one thing I am not sure about. If we have nothing in concrete to confirm immune deficiency, does that mean that somebody is willing to take a risk? Take a chance just on signs and symptoms alone? A very new concept for us.
She has had a battery of blood tests. Whether anything comes back as abnormal is anyone’s guess. All of her previous bloods have come back predominantly normal. Frustratingly normal.
That’s not where this story ends though. The blistering could indeed be related to the Ectodermal Dysplasia, in fact there is very strong evidence to suggest this.
And the kicker? The gluten/wheat/lactose free diet is working! Today, I’ve only changed one bog from the deep poo!
One!
That has to be a record.
Okay… So maybe we are seeing a glimmer of light at the end of a very long tunnel… fingers crossed for you…
(((((hugs))))) kim xxx
hoorah on the poo ! and the diet working. Ivy is such a sweet thing she needs this to work.
Yay on no blisters and a plan .. now we pray it goes to plan. Yes like Kim said before i could - there is a glimmer of light shinig at the end of what has been a very dark and very long tunnel.
I hope it isn’t the ED but then at least you know what you have to deal with. {{hugs}}
I’m so happy things seem to be moving at a quicker pace suddenly.
the right direction, a good start to the weekend.
Fingers crossed - along with everything else I can cross and still walk.
really hope this is the beginning of the end of your search for answers!
yay for only one poo!
Yay for a plan
yay for taking a chance.
I really hope this is the light at the end of the tunnel for you. You certainly deserve for it to be.
hugs
No blisters and only one poo. That’s great news. Hope you get smooth sailing for a while now Or forever…………
OMG *dancing around the room* wonderful poo! Marvelous poo! Glorious poo! I am so with you on the poo thing babe. Honestly if you sent me a photo I could tell you exactly what she has been eating I am so poo proficient.
And all the other news? Dancing around again for you babe. Maybe a little prematurely but hey, things sound like they are finally looking up for you. And I am so happy.
Great big gigantic Woo Hoo’s!
Oh, this is sounding so much better! I’m glad you’re finally getting somewhere and that you had it out with your Paed… Yay for you for standing your ground!