I adressed my issues with the paed.

I told him about trust and how important it was to me.

I told him how hard it was for me to trust.

Especially doctors.

I told him that for me to trust anyone with my children’s health was a big thing.

I think he got it.

I told him where I was coming from and how much it had hurt – the accusation.

I told him I had spent such a long time learning to trust myself and that his words had burned.

He apologised.

Profusely.

And then he told me he liked golf and wore Ruggers.

That:

was an overshare, my friends.

I didn’t mind though because it meant things were on their way to being back to normal.

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.

I’ve been trying to keep it a little lighter around these parts. 

You guys like that, right?

A bit of comic relief?

Behind the scenes things have been chaotic.

To say the least.

But you knew that.

On Tuesday morning we packed the… err… pack up to make the journey to Sydney. I was disorganised and stressed. When the children got an ear bashing about why they had their shoes on when we were by no means ready to leave, I had to pull myself back.

Whoa there horsey, getting a bit carried away there, aren’t we?

The last thing the kids needed was an anxiety ridden parent riding their tales over the little things.

Bad Mummy.

Anyhoo, it was our usual saga of having an appointment and then not having an appointment and then having one again, coupled with finding out that our justice system sucks bananas and had granted my evil step mother probate. (Another tale – one sad story at a time, my fellow blog friends).

Thanks to the fast talking action of my PA (husband) we soon found ourselves heading(hurtling) towards Westmead Children’s.

We were lucky enough to meet up with Trish and her boys for a play in the park and time to regroup.

My heart was thumping as Trish walked me into the hospital. It was… surreal to be there again.

Dave met us there and we started in on what ended up being a two hour appointment with the immunologist. For a while we went around and around and then suddenly there seemed to be some kind of breakthrough.

I must admit that I left the hospital feeling even more confused and upset.

We didn’t get home until after 11pm that night.

On Thursday we went to the paed for our plan. Another need for deep breathing and calm blue ocean thoughts.

to be continued…