When you hear hoofbeats behind you…

by frogpondsrock on September 6, 2012

in Ehlers Danlos Syndrome,Evelyn,Family

Don’t expect to see a Zebra.

Unless of course you live with a rare illness because then you are surrounded by Zebras.

Ten years ago my eldest child Veronica, became ill with a mystery virus and together we jumped onto the medical roundabout in search of answers. It took seven years to get a diagnosis of Ehlers Danlos Syndrome and during that search we encountered the best and the worst that the medical profession has to offer.

Now Veronica is in hospital with her youngest child, Evelyn and the medical profession are again searching for answers.

Evelyn is having seizures and is spending all her time sleeping.

The ultrasound of my grand daughters brain was normal, her bloods were normal and the EEG was normal.

So our best case scenario which was epilepsy has been swept out the door.

Now the Doctors are looking for rare.

We are looking for Zebras.

Evelyn is going to have an MRI and a Lumbar Puncture and lots of blood tests, today and tomorrow.

The paediatric team here will be liasing with theĀ  paediatric neurologists in Melbourne as they test for chromosomal abnormalities, as well as for rare metabolic disorders.

It is the Lumbar Puncture that worries me the most.

In fact if I am honest the thought of a Lumbar Puncture on my tiny grand daughter terrifies me.

 

{ 35 comments }

Fiona September 6, 2012 at 8:02 am

*hugs*

frogpondsrock September 6, 2012 at 8:20 am

I will accept your hug gratefully. Thanks Fiona.

Laney September 6, 2012 at 8:06 am

I’m so sorry to hear that she needs to go through these tests. I hope you all get some answers soon so you know what you are dealing with. Thinking of you all x

frogpondsrock September 6, 2012 at 8:19 am

Thanks Laney :)

Liz September 6, 2012 at 8:16 am

It’s horrible not knowing what’s going on. Lumbar punctures are scary looking procedures, I had one when I was a toddler and I don’t know how Mum managed to watch that. But if it’s any comfort, I had a lumbar puncture in 2006 and there was very little pain or discomfort. It was similar to a regular injection. They use a topical numbing cream on the area, and possibly a local – I can’t be sure because I couldn’t see, but whatever they did made it an easy procedure.

frogpondsrock September 6, 2012 at 8:19 am

Oh Thank you Liz, thank you. The Spouse had an epidural 20 years ago and it was excruciating and his back has been bad at the site of the injection ever since. You have stopped me worrying quite so much.

Meegan MacQueen September 6, 2012 at 8:23 am

Much love to you all….xxx

frogpondsrock September 6, 2012 at 9:10 am

Thanks Meegs,xx

Watershedd September 6, 2012 at 8:28 am

Kim, the peads and the various teams will treat Evelyn like one of their own. Their hearts break too for these little ones. The LP will be fine. I’ll be interested to hear what the other tests have to offer. They are moving quickly it seems, which is all good as it enables management strategies and treatments to be put in place as early as possible. Hugs to you all. Wish I could be there to hold your hands for a while and reassure you about the whole process. Will speak to you later, hopefully. X

frogpondsrock September 6, 2012 at 9:14 am

Evelyn’s Paed is lovely and he listens well. They are going to do the procedure you recommended as well when they do the MRI either today or tomorrow. They had a lovely intuitive nurse in attendance overnight and she witnessed most of Ev’s episodes by following Ev’s vocal prompts. So I know they are in good hands I am just worried about Veronica as I know how quickly she can go from being well to being very ill herself. xx

tiff September 6, 2012 at 8:28 am

sending love xx

Zebras are cute to look at but very very tough.

frogpondsrock September 6, 2012 at 9:15 am

heh :)

carmen September 6, 2012 at 8:38 am

Then let’s hope it’s a little zebra…no unicorns allowed. I’ve had my share of unicorns…mega hugs, love, strength and positive thoughts K xxXOoo

frogpondsrock September 6, 2012 at 9:15 am

Thanks Carmen.

Fe September 6, 2012 at 9:23 am

I am so stilled by this. Wish I could help in some small way. Sending love to you, my dear friend. Love and tiny innocent zebra wishes.

xoxox

frogpondsrock September 7, 2012 at 3:07 pm

The fact that you are here for us is plenty Fe xx

Jen September 6, 2012 at 9:47 am

Here’s hoping for some good resolution to all of this. Hugs from me to you and Veronica and little Evelyn too. xx

frogpondsrock September 7, 2012 at 3:08 pm

Thank you Jen

Pixie September 6, 2012 at 9:50 am

I’m glad they are looking for zebras and not wasting time searching for lost horses

I’m concerned about Veronica’s health too

Love to you all

Angela September 6, 2012 at 11:03 am

Sending you lots of love from New Zealand.

Mrs. Oh September 6, 2012 at 11:53 am

Kim – I have had to read this twice to understand it all and I can’t phathom what you guys are going through. Will keep you at the top of my prayer list. I wish there was more I could do but sending you love and best thoughts for that sweet girl and your family.

Maureen (Mo) Strom September 6, 2012 at 11:56 am

Again prayers and hugs for all!! Strength, Love, and Peace is what I’m paying for..

Marita September 6, 2012 at 12:24 pm

Xx

Much love.

Carli September 6, 2012 at 12:44 pm

Sending you some strength today and I hope you all get some answers soon, limbo land can be the pits x

Trish September 6, 2012 at 1:23 pm

Positive vibes for all the tests . My boy had a LP at 5months I can understand the fear . Veronica is resilient and Evelyn is in good hands.

Happy Elf Mom September 6, 2012 at 2:19 pm

Poor baby! Many prayers! I know the doctors there are awesome but it’s terrifying!!

edenland September 6, 2012 at 4:41 pm

Kim I am thinking of you all so much. So, so much. Praying for horses.

Xxxxxxx

Elephant's Child September 6, 2012 at 5:26 pm

Oh Kim. The right words won’t come to me, but I am sending so many caring wishes for Evelyn, for Veronica and for you. (and the rest of the family as well). Chilly hugs from Canberra.

Mrs Catch September 6, 2012 at 5:54 pm

Hi Kim. As you know, my middle son has leukaemia and so is a veritable pin cushion for lumbar punctures and bone marrow aspirations. If it’s any comfort, children are usually put under general anaesthetic and bounce back much more quickly than adults. He hasn’t had a sore back yet and neither has his donor brother. I feel sick imagining the worry and stress that your family is enduring and do hope there is a happy outcome. Sending big squishy hugs and positive healing thoughts.

Amanda September 6, 2012 at 8:03 pm

I know its not much, but I am willing things to be OK with every bit of willpower I can muster. XXX

roseg September 6, 2012 at 8:17 pm

the one blessing here is that evelyn is unaware of all the fuss. so when she has a lumbar procedure etc she is not holding her breath in anguish or mentally processing the information the way you are. if anything, she is momentarily experiencing something and responding totally naturally. she may cry but, like any unselfconscious, utterly natural creature, it’s pretty soon over. it hurts you and veronica and the men and everyone else much more than her. she’s not lying awake stressing, or having nightmares about zebras. you are. i so hope you’re able to hone in on this and draw some small comfort from it.

we also live at the best time in history in medical terms and we’re in the first world. small consolation but still true. she will get the best possible care and attention.

i’ve been praying for the days to pass. the waiting is always the worst, i reckon. and here we are. it’s already today after so many days of anguish. may the horrible days pass quickly and may the news be good.

best, always

rose

river September 6, 2012 at 8:48 pm

Crossing everything I can and hoping for a speedy diagnosis and cure.

roseg September 6, 2012 at 8:53 pm

shit. just read veronica’s latest blogpost (since posting my last comment). i feel sick. i’m so sorry. i so wish i knew something that i could offer.

frogpondsrock September 6, 2012 at 8:55 pm

The fact that you are here holding my hand is plenty :)

Achelois September 6, 2012 at 11:18 pm

Sending virtual hand holding, hugs and empathy. xxxxxxxxxxxxx

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