Three Ring Circus

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From the frying pan into the fire.

I whinge alot.
You would think I would learn a lesson…
When you tell the universe you can’t take much more of the coughing and snot, the tears and grumpiness of one child, you expect a little reprieve.
Well, I do, anyway.
Instead the universe smirks at you in that ‘you’ll be sorry you said that’ kind of way and […]

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Cushing’s Syndrome

Ivy has the beginnings of Cushing’s Syndrome.
Here is a picture of Ivy when she started the prednisone
.
This was about a month in, January, weighing just under 12 kgs
This is Ivy at the beginning of May.

Weighing it at 15kgs.
See her face, the roundness, the loss of her neck? It’s known as ‘moonface’ and is a typical sign of […]

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When you live in the boonies…

…and you need to have your daughter seen by an endocrinologist, expect that you will wait a very, very long time.
What is your best bet, for a waiting time, my friends?
Six weeks?
No.
Try six months!
That’s right, six months, that will see us just about up to Ivy and Noah’s 3rd birthday
in November.
The paed’s idea that we […]

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Ivy update - playing with fire?

We went to the paeditrician yesterday.
Ivy was well (touch wood touch wood touch wood).
Her chest was clear.
Her stomach not too tender.
Her ear looked much better. Still not fabulous but he said he could see a clear spot.
Her bottom was clear of any blisters, clear of any trace of the pemphigus, just a small amount of […]

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Dapsone is better than Prednisone because?

Today I got a fax from our paed.
It was a plan, some pathology results and a script.
That’s right, my friends, you can doctor a patient via fax now.
Don’t get me started.
Yes, I am disgusted.
Anyhoo, the plan; was to wean Ivy off Prednisone because she is at risk of diabetes and brittle bones and a plethora […]

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Ectodermal Dysplasia with immune deficiency means squat.

The doctors are salivating over their diagnosis.  You know when you hear the words “three way phone conference” thrown into the conversation about your child, that it is the real deal.
Very rare they say, very complex.
Can anyone say understatement of the year?
They talk of DNA testing and OPG to confirm and publication and recognition of […]

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Ivy update or Dermatologists gone wild.

Here’s the scoop. Ivy is every dermatologist’s fantasy. The pin up girl of pemphigus.
We met with the guru of all things blistered. She asked us some questions. She took lots of photos. She made some suggestions.
Our heads did spin with possibilities.
What it came down to, what is our (limited) understanding and what has been confirmed this evening […]

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More thoughts… and an update on the ugly.

When I gave up my son to the unforgiving universe, I thought that I had paid whatever penance I needed to, that whatever wrong I had done in my life had been forgiven, when I let him go.
These are strong words, my friends and if they are too painful or heavy then, please don’t read. […]

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Okay.

I’ve just spoken to the paed.
On Wednesday he phoned David and among other things, told him that Ivy’s colonoscopy showed a thing called melanosis coli.
Now, before you go and google that, you should know, that everything that comes up talks about laxative abuse.
Yep. Laxative abuse.
As you can imagine, for the last couple of days, all hell […]

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Here we go ’round the mulberry bush!

Ok, sorry anyone who is sick to death of my negativity and my ranting over Ivy’s health. If you don’t want to hear it don’t keep reading, in fact go here. Kelley has the most hilarious post up at the moment or go here and see photos of Jacqui having lost her first tooth but […]