Posts Tagged ‘side effects of prednisone’
The seedling.
I’ve been looking through some photos.
Some of when the pair were two
and then three.
I think it’s about then that I start to see the differences in height.
For a while there, Ivy is just a tiny bit taller than Noah
and then suddenly she is not.
It’s okay in preschool because Ivy just doesn’t feel that she is any different
but now it’s obvious.
It’s this photo that makes my heart break:
Ivy has been sad these last weeks gone -
the incoming kindy kids for 2012 are all taller than her,
Noah graduating from his booster into a normal seat, as he pushes through the RTA restrictions
while she still fits snugly in her booster
and even still, into her baby seat.
It’s not fair.
She doesn’t like this.
She doesn’t want to be tiny
or little
or cute any more.
That was okay before all of her peers started to tower over her
but it’s not now.
It’s just not.
I’ve wiped her eyes and stroked her hair
and pulled out all of my best deflecting skills.
Used all the ‘good things come in small packages’ lines that I can.
I’ve talked openly to her about her height
and why she is now 27cms smaller than her brother -
the illness,
the medicine
but still, she is feeling it.
Last night she mentions to me that she has worn her favourite rabbit PJs since she was three
and I know she’s right – Christmas, 2008 to be precise.
I’m not sure how to help her anymore.
I can tell her she is as tall as the tallest building in spirit.
I can encourage her growth with exercise and sunlight.
I can position her in photos, so she seems taller somehow
and give her tools (both emotional and physical) to deal with her height
but in the end I can’t give her what she really wants.
I can’t make her grow.
I can’t give her height
and the two things that may make a difference -
she can’t have those either.
There will be no cessation of prednisone
and there will be no growth hormone – at least not under our current doctor.
It’s not everything, I hear you say.
I should concentrate on the positive -
she’s graduated kindy,
she has a nice group of friends
and she is headstrong
and beautiful
and determined to make the most of this life.
She has so many other issues, why worry about her growth?
There are oodles of physical reasons that I could give you -
how there is additional strain on her already osteopenic bones
and on her heart
and how it will contribute to her dental issues.
How growth hormone not only helps with the obvious but will help with her immune system
and her bone density too
but really
it’s big for me because it’s big for her.
When she’s hurting I want to fix it
and now I need to find a way.
If the paediatric endocrinologist up here won’t help then surely there must be another somewhere,
who will do the paper work.
There must be a doctor who is willing to push the boundaries and apply for the growth hormone, even if it is denied first time around;
at least take that chance
and so that’s my New Year’s goal -
to find someone who will do just that,
to find someone to help my seedling to grow.
She deserves to be as big as her spirit.
Moon face.
I’ve had a few comments lately.
Especially after the last photos of Ivy were placed on the blog.
Concerns for Ivy’s weight and for her appearance
remarks about her double chin and her little body straining against her clothes
and they sting.
They hurt.
There are also people surrounding us,
who jeer.
People who can only see a ‘fat little pudding’.
People who don’t know,
or don’t care to.
I’ve had suggestions of diet change
and that I am feeding her too much.
That she is just simply fat.
Sage advice on making her exercise more often
and now I find that there are kids at school teasing my girl too.
I want to set the record straight.
I want them all to stop.
I want them to really look,
look properly at my chronically ill but devastatingly beautiful little girl.
I want them to see how painful this is for her
to hear the whisperings
to see others point and stare.
On top of everything else.
She knows she looks different.
She asks why.
It’s not right.
Ivy weighs 20 kilos.
She is 5 years old
but she is only 95 cm tall.
She is on 15 mg of prednisone a day.
That’s quite alot for a little girl and she has maintained that dose for almost three years.
When she is sick, her dose is doubled, often tripled
and she is often put on intravenous hydrocortisone too.
Prednisone has many side effects.
One of which is fluid retention and what looks to be rapid weight gain.
Another is growth suppression.
Another is a condition known as Moon Face.
This is where the face becomes noticeably round and loses its definition because of fluid retention in the facial tissue.
These are all side effects that Ivy has,
along with muscle weakness, decreased bone density, bleeding from her stomach and mood swings.
It’s hard for a little one to understand why her parents would consent to a medication that disfigures her once whispy little body.
It’s hard for me to wrap my head around it.
Without the prednisone though, Ivy blisters
and that is way more horrible than anything else.
It’s a case of the medication side effects being the lesser of two evils.
We have not set out to ‘make her fat’.
We would never want this for our child.
She dances once a week, when she is not in the hospital
and runs with the other kids when she can
but because of illness she is often tired and has little stamina.
She is on a gluten and lactose free diet and we try to keep her diet low in salt and sugar too.
We were told to encourage a diet higher in protein than a normal child’s diet
because this helps with food cravings and also prevents muscle wasting.
Ivy prefers fruit and vegetables to breads and meats
and doesn’t eat alot of junk.
When all is said and done
she is just a little girl
beautiful
emotional
and human
trying to make the most of what she has been given.
She shouldn’t need to worry about appearance too
because people are ignorant
and don’t take the time to stop and think.
Comments are closed on this one, guys.
Sorry.
Just the facts… and maybe some feelings about those facts too.
The growth hormone levels came back normal for Ivy.
It’s a good thing,
yes.
It’s good but it’s also frustrating and confusing.
It means that her body is making good levels of hgh but it doesn’t know what to do with it
and that’s not great.
It means that we can still apply for the medication
if we want to;
(wait six months for an appointment, fill out a forest worth of paper work, fight with bureaucracy)
it just means more (flaming) hoops to jump through.
The endocrinologist is all for our applying to the government,
and thinks that the synthetic hormone might be the way to go.
The paed wants us to wait.
He wants us to keep exploring the immune system wipeout idea with the immunologist.
The immunologist, who only three months ago, told David and I that she was happy with the way things were,
bar the lack of growth for the girl.
The paed believes that by going down that pathway, we will achieve a decrease in other medications
and Ivy may very well start growing on her own.
I am starting to get that backed into a corner feeling.
This is what I think;
The thought of killing Ivy’s B cells makes me want to throw up.
Every fibre in my being screams to me that this is not the right thing for her,
right now.
I don’t really want to treat the side effects of another medication though either
but to me
it seems the lesser of the two evils.
In my ideal world
I could start Ivy on the growth hormone over the Summer.
It would give her six weeks to get used to the idea and it would also give her an advantage for when she starts school.
She may have grown a bit,
her risk of heart issues decreased,
her chances of bone fractures may have reduced a bit,
her health may have benefited too
and all of those possibilities combined could give her some kind of protection from the new experiences school brings with it
and if it works
who knows,
perhaps, with the change, the paed and the immunologist would stop talking about ‘the wipeout’
and I would be able to sleep again at night.
Of course, it’s not a perfect world.
Is it?