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!
ARRRRRRGGGGGHHHH!
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.
Nice.
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.
Tears.
For you. For Ivy. For your family.
I have nothing of benefit to say. Just a big smootch from that ‘‘that funny, rude lady whose husband made the mistake of buying her chocolate chip biscuits”
Oh hon, i don’t know what to say either. I wish I could come over and give you all big hugs
Oh hun, (((big hugs))) I wish there was something I could do, they could do for her.
Poor Ivy and poor you. It is heartbreaking to read this and to know that I can’t help.
Look for a new paed?
Wish I could say something to make it all better, but all I’ve got is that I’m thinking of you all and especially poor little Ivy and sending lots of hugs and hope that things get better soon. xxx
Oh sweetheart.. believe me when i say that i know what it is like to have a sick child and No Fucking Answers…
It is sooo Frustrating.. I am Frustrated as hell just reading this… Dont give up. Stamp your bloody foot. Demand some answers. Demand some bloody respect from these doctors.. grrrr bloody doctors.. grrr..
hugs Sweety <3 kim
I can only echo - Poor little Ivy girl , hugs all round.
I can’t imagine how much di-stress it is all causing you my friend. Words fail me.
Have you tried the big girls Paed in Sydney ?
http://www.pemphigus.org/
Pemphigus normally affects people in middle age & it is very rare. The above web site has a wealth of information including doctor referrals & what tests determine whether pemphigus is the correct diagnosis. Best of luck. I hope it is NOT pemphigus.
Oh bugger,bugger,poop,cack,shyte,pooh.
I’m so sorry we can’t knock on your door and make you a cuppa or something.
If you give me the paed’s number I’d happily plant my size 10 Blundstones in his backside for you !
Can you give Ivy Nilstat to lessen the effects of the AB’s on her gut?
Seriously look for a new paed.
thank you everyone.
In the paed’s defence - he is doing what he is supposed to do. Refer when he is not sure.
I am more cranky with all the difference of opinion between the doctors.
Growler; thank you for your comment but we have already had a positive immunoflourescence through biopsy and I have that website in favourites.
hugs hon. Praying for you and your family.
Tiff -
Oh, I wish I could say something brilliant to lift your spirits! But as you know, I’m mired in a murky frame of mind right now too. How ’bout I just pull up a seat right here next to you and sit a bit… saying nothing but knowing and feeling along with you, oh, how much this hurts. I know I’m an ocean away, but I’m keeping you company in my thoughts. Big hugs to you. I’ll keep swingin’ if you will…
I. am. sick. over. this. shit. I know the doc is doing his job, but when it is a baby you just want them to press a button and FIX IT DAMN IT! JUST FIX it and her, your Ivy. Just fix her. Have you rung the doctor in Sydney the one who is in charge of the blister org? Prof Murrell holds a dedicated bullous disease clinic every fortnight. Referrals are mandatory and should be faxed to 02-9350-2886 and made by ringing 02-9350-2088.
Hang on sweet Momma, you and your girl will be well!
This makes me so sad and pisses me off all @ the same time. Do I need to send some hate email to your doc??
that is so unfair
Just hang in there…give her plenty of cuddles (carefully) and lots of support
Have a yell at the doctor, my mum yells at everyone when they beat around the bush.
The phone is best because then you dont get snet away by security/police etc.
I’m so sad for you and Ivy. If my mum was alive still she’d tell you to threaten your doctor with camping out in his waiting room, yep, sleeping bags, food supply, nappies, the lot, until something is done. Me, I’d suggest trying the bigger girls paed in Sydney, like Trish said.
Try to stay positive eh?
I know its insanely hard and crappy, but it WILL work out, and the brood need a happy mammy
My son was on pred for two weeks, and those were the worst two weeks of his life. I couldn’t even imagine.
Here’s a tequila-laced hug to make it better. *()*
I am so sorry your baby is going through all this. Doctors can be such buttheads sometimes and forget they are treating people and not just an illness or “condition.” Hope Ivy is better soon.
Thinking of you. Did paed call on Wednesday? Dying to know.
I hope you are all doing ok. I don’t like it when you don’t post. Come back soon.
Oh, I’m sorry…here’s hoping something is figured out this week! Hugs all around!
This sucks. I’m raging along with you.
I wish there was some yellow bootie mojo that would work on this.