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 don’t stay here if you want to read something light hearted because that is not what is coming.
The paed phoned today. That was good.
He asked how Ivy was and how she had faired over the weekend. Also good.
He said he had spoken to the dermatologist about Ivy’s pemphigus and he still wasn’t convinced that is what we are dealing with! What is with that?
The dermatologist, who wiped his hands clean of us, several weeks ago, now wants to see with his own eyes, how the pred has worked for Ivy.
The paed asked if we had heard from the dermatologist. No, no, a thousand times NO.
We have been on our own coping with prednisone highs and devastating lows. A discharging ear and an obvious infection. Diarrhoea worse than it has ever been, and the poor little girl who is getting lost in the middle of all this since the world’s most expensive test to find nothing!
So, if the derm doesn’t call by Wednesday, I have to call the paed and he will phone the derm and ask what the heavens is going on.
R i g h t, like the paed is going to speak with me on Wednesday, his busiest day. I know what that means. It means we will have to play message tag with the receptionist.
So what does it all mean for Ivy?
Staying on the prednisone until Friday, full dose.
This might not seem so bad to whoever is still reading this rant but for Ivy it means roid rage, joint pain, her face has ballooned out with all the fluid retention and because of this she has to be seen by a renal specialist because her kidneys aren’t functioning like they should.
Yep another doctor! (Put your hands in the air like you just don’t care! Everybody say Yeah! (yeah)).
Because her infection hasn’t cleared, QID (four times a day) of the erythromycin for another few days.
EES is terrible for the gut and causes her already gross poo to become worse. Stomach cramps etc.
Back to a doctor that I don’t trust and who obviously does not like small children.
(When I told the paed I didn’t want to see the derm, he laughed but I was deadly serious. What can he do that our paed can’t? He just wants to ogle Ivy’s backside and put us off for another six weeks or so. He is not a very friendly person, yes, he is a good dermatologist, who knows his stuff but I want more from someone who is dealing with my baby).
I don’t think so. I’m sick of seeing my baby in pain. I’m sick of going to this doctor and that doctor and never getting anywhere.
I want our paed to grow a pair and make a decision and treat my baby.
I don’t like this ride anymore and clearly, Ivy does not either. Doctor after doctor after doctor and we still come up with nothing much of anything.
‘Round and ’round and ’round.
No diagnosis to work with, no defining blood tests. Nothing on the colonoscopy and endoscopy. Nothing.
And yet, she remains sick.
We can’t go anywhere or do anything. She’ll get sick, she screams because she is in pain, whatever the reason we are virtually house bound.
Unless we risk it and then we get in trouble for risking it.
I could just cry.
Join Ivy in her prednisone fuelled rages.
Seriously, I am beginning to lose hope.