Pemphigus what?

Before I start this post, I want to thank everyone who has followed along with us on Ivy’s journey so far. You have all been sympathetic, encouraging and you have even walked along with me, some in body and some in spirit. The comments and emails, the inspiring stories, really have helped me through some bad days.

It seems our path has a new twist in it, so don’t go anywhere, you hear? I’m going to need you.

Ivy’s biopsy came back yesterday with a positive result for a rare auto immune disease called Pemphigus Foliaceus. She is the first that the dermatologist has seen in a child, although there are kids out there with it.

It’s something that usually presents in late adulthood, if you have the predisposition to it.

Ivy will have to live with it for the rest of her life. The illness, the blistering and the medication to try to control it. Already she has had more tests to determine what subclass she falls under before the appropriate treatment is started. I’m not exactly sure what the medication will be yet.

For all of yesterday, I was in shock.

Firstly because, after almost two years of fighting with doctors to get them listen to me, we finally seem to be getting somewhere and secondly because something came up on the biopsy. I was so sure, like every other test that Ivy has had, that it would come back perfectly normal.

I cried when she had the bloods taken and I heard for the millionth time how Ivy was ‘difficult’ in the tests she needed.

I felt out of my depth. I had all the kids with me, who were also worried.

Ivy was sick with high temps and miserable.

It was a very stressful day.

Today, I have spent some time researching and have a better idea of what lies ahead of us.

Today Ivy is having a happy day too, which is nice for both of us.

Postscript; Also noted in Ivy’s results was that there was no sign of fungal infection, therefore, no thrush.