Ladies Camera Club

1 Sep 2008

Its that time again


I honestly do not know how the NHS works but Ellie has been off school for 6 weeks and just as she is about to go back again, bugger me, 3 appointments for September arrive and all in school time. That's not including the one today.

I know people who read this see it as me just whining and moaning and guess what - they are right! Slurp, yes! It's my right to have a bit of a go because it something to have a go about, actually. Watch with interest readers, the blog posts about Ellie's journey is about to get really whingey.

Whilst I have issues and problems with lots of stuff in our lives and household, nothing penetrates my rag like our health service. Belle has an appointment today with an Endocrinologist (hormone's to you and I!). We have seen this doctor before (we shall call her Dr Diddy and Cute) and we had seen one 5 years ago in Leeds (we shall call him Dr Snarky) and more recently a nutty guy in Nevada. Dr Snarky in Leeds thought she had Coeliac but by reading his notes (and I have access to all Ellies notes) he wrote a pretty mean thing in there about me; basically insinuating that I knew nothing about the medical system and that I should stop interfering. How funny is that? I think as a mother you ought to stick your nose in everything concerning the NHS because if you do not ask you do not get and when you do ask - you still don't get. LOL! Dr Snarky had a sneaky hunch she had coeliac's but up until now there has been no evidence to suggest that. Dr Nuts in Vegas spieled off a ton of suggestions as to what she may have but one in particular was Laron syndrome but its quite evident Ellies doesn't have it. Saying that, Dr Fruit Loop is a very clever and interesting man and we love that he spared lots of interesting facts about our gorge daughter. Its just that, well, he is Loopy Nuts and funny with it!
Dr Diddy and Cute had previously weighed and measured Ellie but nothing really came of it and called us in again today for a follow up. Only Dr Diddy and Cute had been called away to an urgent matter in India so instead we saw Dr Lovely and Light. Dr Lovely and Light is really all her name suggests. Today she had told us Belle had put two pounds on since March (woohooooooo) and that she had read with interest all the notes from Nevada. Lovely I thought, its about time, we have been back since April. She was just perfect and nodded in agreeance and made suggestions elsewhere. Its just fantastic when a Doctor empathises with the frustrating issues you deal with, namely getting to the bottom of why Belle is like she is. Her main concern was Belle's weight and height ratio. Its not good really and to get an indication of what I mean, Belle has given me her permission to share this picture for you to get a grasp of why I whinge/piss/moan all the bloody time.
This isn't mean to shock you or for you to feel sorry for her, it doesnt shock us and we don't feel sorry for her (just want to help her and just to add - she eats like a little pigster!) but we know people nudge each other around a poolside and point at her. Some even have the audacity to shake their heads. Grrrrrrrr .

Now it was suggested in Nevada that Belle might benefit from two forms of scientific help with her growth. One is relatively inexpensive and is called Carnatine and the other, which costs almost $30,000 a YEAR in the US (not sure in this country), is Growth Hormones. I know that to receive growth hormones in this country it is based on a case in the most highest extreme because they are so expensive (and of which we are prepared to part or wholly fund from her sponsorship). Apparently, the most affluent of our nation can buy these privately for their children who they fear their kids will not be of acceptable height! We think Ellie is just grand as she is but the choice of whether she wants this is purely hers - she can decide if she wants to by a little tiddly wink or mainstream like you and I. It also depends on the next step with is gastroenterology (that is most deffo spelled wrong!). If that does become fruitful then growth hormones are likely to be offered to her which surprised me a great deal because they are not given our willy-nilly in the UK. Dr Lovely and Light gave us a wonderful run down of her thoughts and intended processes, quite unlike any Dr we have ever seen before. You know, it kind of makes me beet red when I think how lovely it would have been to have met her years ago. Her processes means investigation which leads to wanting blood. They are going to once and for all check fully for coeliac and enzyme deficiences which may be causing her dietary issues (and then thats only a weight query becuase she really does and actually eats - actually!)

But Blood? From Ellie? Oh bollocks.

Too late, Ellie had heard the word blood.

and strated freaking out in her little chair and sweat dripped from her hands like water from a tap and hysteria set in. Oh god, I thought..... Not today as I promised her that there would be no hurts today. I asked Dr Lovely and Light if she could defer the samples until we meet with Dr We-have-never-met-such-a-fabulous-Neurologist-in-12 years next week, which gives us time to psyche Belle up for the draw.

Its all good in this house, really. Maybe frustrating at times but when you have Doctors on your side for a change, it has to be good - doesn't it?


weewiccababe said...

I totally agree with you, all doctors should be like Dr Lovely and Light. Although our daughter's consultant is akin to God as far as I'm concerned, some of the health professionals I've had to deal with need a swift kick to the head.:)
Anyway, just wanted to let you know that you're not alone, and if you're at all interested we run a website for parents just like you - am we all like a bloody good moan too, in fact we encourage it lol. You'll find the link - Extra Special parents - on my blog
good luck with the blood tests

crazed lunatic said...

I have no idea at all what you're going through. But I wish all the world for you and your Belle! Good luck with your continued quest to figure out what's up and how to help her. You're a fantastic momma for keeping up with things. And I didn't get enough fighting in at my karate tournament this weekend to get it out of my system... lemme have a go at Dr. Snarky.... ;) Hang in there, and my thoughts are with Belle for her blood draw. They are certainly no fun!

Just call me G said...

Hi Kirsty

As a regular reader of your blog... and of course on how Bella is diddling.. it both made me because at last you are being listened too and made me sad reading this post on exactly how long its taken for someone to listen to mum..... and moreover how much longer Bella has had to wait.

I have had nothing but great care from my consultants during my run ins with cancer though my last one was very rare and I could see then how lacking in resources the medical service is compared to how it was with my breast cancer..

Sadly with Bella being extra special in having something out of the 'norm' medically wrong, it will be the same for her.... and of course her family....

Bloods.... bless the babe... are they able to give her something to take the sting away... like a rub on anesthetic or something?

Heidi said...

It's definitely good when the doctors are on your side. We deal with a lot of doctors because my husband has a rare blood clotting disorder, so I feel your pain about doctors. I could not imagine having to go through all of that for my child though!! Feel free to whine all you want, venting is always good.
Your daughter is a little beauty as is her mother and I thoroughly enjoy your blogs!
I hope that you are able to get some answers soon.

est26 said...

Hey hun thats what the blog is for to let off steam you vent what you want hun. I cant begin to understand what you and Mark must be going through and the frustration it must cause.
I don`t think you smell by the way ;-) (facebook) and would love to catch up again soon now the kids are soon to be back at school, I want to see if your craft room is still as tidy as it was in the photos hun ;-)
Take carexxxx

Jan Connair said...

I don't know if they offer this in the UK, but in the US, my daughter recently needed cortisone shots in her knees. Although she is not one to be bothered by what she thinks of as little sticks, they had some sort of spray that they doused over her knees that more or less froze the area so that she did not feel anything at all. I have had people tell me cortisone shots in the joints can be quite an ouchie, but she thought nothing of it with the use of this spray. Maybe you could call and ask about it ahead of time. It might even be a product you could purchase and take with you if they don't offer it.

Deanne said...

Oh Kirsty what wonderful news.
Finally a Dr with a HEART which is how they all should be.
Huge hugs to you all xxxx

kath said...

You rant away my lovely - what a bloody disgrace that Belle has never had proper investigations done... they call themselves professionals...don't make me makes me so angry that you have gone through years of this. Fingers crossed that this new doc will do the biz.....
Lots of hugs

Terrie B x said...

Your allowed to let off steam!!!
After years of frustrations I hope this new DR.finally gets the answers you need!!!

Have a lovely Day:)~X~
lubbs to you all~X~

Amelie said...

hooray a doctor who listens and gives feedback!! may the rest of this journey be lovely and speedy with plenty of answers and nice doctors!
give Belle a hug from me, being poked and prodded all the time must be awful for her. though necessery. shes a champ.
good luck psyching her up for bloods...shes a brave soldier!

michele said...

I am glad to hear that you have finally found a dr that is going to help. I can't imagine what you and belle have been through, but I can listen when you want a rant! better here than at the wrong people. Good luck with it all, hugs mx

cannycrafter said...

Hang on in there Kirsty!!! I know it can be trying at times and I have certainly encountered the "He is not coming anywhere near me with that needle" problem! (We also have issues with tablet swallowing in our house and now DS1 is nearly 18 it is highly embarassing, but understandable!!! I hope Dr Nicey and Lovely are there next time you visit! Why don't they know where us anxious parents are coming from???? Keep smiling!

Cath said...

I'm thinking of you Kirsty and hoping you can get some answers soon!
belle is such a courageous girlie and lucky to have a mommy who loves her as much as you do!

Cazzy said...

I hope the blood letting goes smoothly, don't you have any magic cream left Kirsty?

I hope it all works out for Belle.


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