The weaning process.

I think that I am the president of the “I hate Prednisone” club.

While this little corticosteroid has it’s place in the medical world and definitely (unfortunately) in the life of my almost four year old daughter, I still loathe it.

Ivy has been on this medication now for about 18 months and it supresses her adrenal gland. She is so badly supressed now that her cortisol levels were last sitting around 3 and the normal is about 250.

Adrenal supression is not fun.

It messes with everything.

Blood sugar levels, ability to cope with stress and illness, the list goes on and on.

Coming off Prednisone, after you have been on it for a prolonged time is no easy task as we are finding out.

Ivy has twice landed herself in a type of adrenal crisis where her body is unable to pick up the slack of the reduced steroid.

Her heart rate skyrockets, her activity levels decline, she becomes lethargic. She vomits and gets diarrhoea and is generally unwell.

Try as we might, we always end up pushing the prednisone back up because, when she is thread bare like that, she gets sick and when she gets sick, her cortisol needs are higher.

We are kind of on this horrible medical round – a – bout that spins so fast somedays, the world bleeds into a sea of colours just passing us by.

I would take all the prednisone and adrenal complications in the world if it meant we could avoid my most hated of Ivy’s conditions:

The Pemphigus.

Pemphigus is a nasty little auto immune disease where Ivy’s body essentially rejects itself.

The way it presents is by creating huge bullous lesions (really big tense blisters) on her body. These burst and slough away, leaving raw skin. This then becomes a hard leathery layer that peels away. My best visual description is that it is like a deep burn.

As Ives gets older, she can feel a cycle coming on and will complain of burning or tingling days before we see any signs that an attack is on the way.

The prednisone helps but when she is very unwell and her cortisol needs go up there are breakthrough blisters.

The worst part, for her, I think is the pain.

For me, it’s seeing her in pain and knowing there is very little I can do to stop it.

All the immunologists and infectious diseases doctors are up in arms because Ivy has not been able to wean from the pred and the other immune supressant she takes. They feel that it is a bit of a catch 22 having an immune deficient child on immune supressants.

They’re right of course.

Those two medications are not helping with her ability to fight off infection.

I wonder though, if they could hear her sob at night because she can’t lie comfortably in bed, if she were their child, who holds on all day because she is worried (at the grand old age of almost four) that the urine will sting the red raw and blistered skin on her backside and legs so badly she can’t stand up, if they would be so quick to wean and so judgemental when they were unable to.

As of tonight our fast wean of the steroid has failed again, in fact the steroid has been doubled to try to control an outbreak of the pemphigus, which followed an adrenal crisis.

Tomorrow we are going to see the immunologist so we can hear again how we are doing wrong by our girl by keeping her on the prednisone.

Tonight I think we are doing wrong by her, trying to wean her off it.

Originally posted at Three Ring Circus

Bringing up seven kids has led to in depth knowledge of asthma, autism, fetal alcohol syndrome and drug induced developmental delay, immune deficiency and autoimmune disease, ectodermal dysplasia, neonatal death and cardiac defect. Despite all of that, I didn't know I was about to start the ride of my life with the illness of my youngest daughter, Ivy.

TiffandIvy

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