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 their ‘discovery’.
But what of the little girl in all of this?
Now she is sick, does her diagnosis change anything?
No.
More antibiotics. More pain relief and *sigh* more blisters. Plus an over the top, over active prednisone induced zombie of a child. I know that doesn’t make alot of sense, stay with me, visual coming up.
Cranky, confused, sleep deprived baby.
Not fair.
One minute she crawls up onto my lap in misery, searching for sympathy in cuddles and kisses and the next she is scampering away to spin and dance to the beat of the prednisone god’s ever compelling drum.
I am tired just watching her.
I guess it’s good she is upright but is it because of the pred that she cannot let her body rest?
She did not sleep last night and made very sure that her parents didn’t either.
Moaning and groaning and rolling about our, now seemingly too small, queen size bed. (Too small because the Queen likes to sleep in a starfish shape).
*Bless her cotton socks*.
Her breakfast consisted of (over the course of two hours - I didn’t hit her with it all at once); liquid iron (ironically based in sorbitol - a laxative), liquid zinc, vitamin C, Bactrim, EES, Prednisone, Singulair and two bites of a piece of pineapple.
A cocktail.
Pina wedon’tknowwhatelsetotrysowewilljusthityouwitheverythingandthensome.
The paed offered me up a hospital bed with all the dressings, on a silver platter but I turned him down. Now I am thinking maybe we should have gone.
Maybe .
I also know that when you take Pred induced children into a hospital setting you get mean, sideways glances from parents of limp, sickly, bed ridden children and throw away comments of your child not looking sick. Oh, if only they knew!
And, providing she can hold her own, I have been given release from the crazyhouse home tonight to take Mum to see Billy Elliot.
Is that wrong to want her to hang in there just one more day, so I can paint the town red?
Take the biggest brush you can find!
Mother fu..-oh, you know. I remember our week long stint with Pred. I was afraid of this kid. I can’t even imagine what you are going through.
If I was there, I would take you out dancing and drinking. Because you totally deserve a night of dancing and drinking.
((Hugs))
not wrong at all.
Hope you get your night out and I hope its fanfreakintastic!!
hugs
Nothing wrong with that at all. Irritates me that the Docs all want to collaborate on a paper describing their ‘discovery’ of yet another boil on the human condition, yet would the human condition not be better served if their paper included an effective treatment for the condition they have found? Their collaboration should be focused on treatment - not publication.
You more than deserve a night out. Kids on pred are unpredictable, time consuming and can be frightening. Well mine was! Fingers crossed everything works out for you. Have a fantastic time and when it’s over plan for the next one.
Yes, please go out and have a wonderful night with your Mum. You’ll enjoy Billy Elliot, I’ve only seen the movie and that was great so I imagine the stage show will be too, and a night “away” will see you refreshed to continue. I hope Ivy settles down for you soon. Is it possible to get iron without the laxative since she doesn’t need that component? I know that in healthy people iron causes constipation, that’s why they add the laxative. Ask your chemist if there is an alternative.
Hugs- Tiff - Hope you are out having a great night .
Yes, I read that on the liquid iron we have too - hope it doesn’t have that effect on Ivy or Sam.
I agree with Xbox, take a HUGE brush. And then tuck a spare into your bra, you know, just in case.
nope not wrong - that is just doing what you need to do to get through this.
PLus I so hear you on taking a steroided up child into hospital… I spent a looong night the ED with zoe once.. she came in blue and barely breathing but after four doses of pred in two hours and enough ventolin to kill a horse she was still blue and gasping for breath, O2 sats of 80% but wanting to dance and telling every person who passed by “Hello, I’m Nemo… I love you”. When we were admitted I heard another parent with a child who was really sick with some kind of spewing illness complain so loudly that they should be admitted before the ‘dancing child who is SO not sick’….
Hope you got to enjoy your night out!
Thank you everyone. I took the cahnce and had a lovely night!! If you ever have the chance to see Billy Elliot, I highly recommend it.
Bit behind all my reading but I’m glad you had a well-deserved night out
Mum saw billy Elliot when she was in Sydney in February and she said it was EXCELLENT…
Yay I hope you and your mum have a great night out…
I have an award for you…
kimxxx
Can I join the I Hate Prednisone club too? That stuff is pure evil.
I’m sorry things are so tough and scary. HUGS.
Oh, Tiff… I know what I’m like on prednisone and I can’t imagine having to watch your kiddo go through that - poor Immy! We’ve had some of those letsjustdumpoutthepharmacycupboardsonya cocktails too… not fun. Hope you have some luck getting the poor little lamb to eat… sure doesn’t help when you have to get down 6 pints of meds first! Hang in there, Mommy… and paint that town whenever you get the chance.