Ladies Camera Club

5 Oct 2010

This is plain old weird

but I haven't had a blow out about the frustration behind diagnosing Ellie for a loooooong while because, quite frankly, I'm sick of hearing myself going mad. Its a relief not to have to write about it but often I find it helps when I'm feeling sucker punched.

Things have been ticking along with Specialists visits and recent tests for vitamin d deficiency, bladder and kidney dysfunction. Ellie thought the bladder and kidney scan was cool but the Vit D test? She hated having her bloods done with a passion. The hospital insist on drawing it twice a year, much to her disdain. And every time the results are finalised, we get a letter back from the doctors with new information on it that hasn't even been discussed with us. Namely Osteoporosis and more recently Myokymia - with a slight mention that her scoliosis is progressive and currently angles at 20%. First off, I didn't know she had Osteoporosis and although I do know she suffers with muscle twitches (termed as Myokymia) it was all news to me on the diagnosis! I could scream, I really could.

We have also been waiting for physiotherapy for 30 months now and the other week we got an appointment through. But the head physio at the session suggested that Ellie take up Pilates. No, they did not offer her NHS physio but suggested a "paid for by me" regime that doesn't necessarily cater for under 16's as it is. Can you see why Im all zombie eyed and a little crazy like?!!!!

Ellies
weight is slowly but surely going on between growth spurts and she currently weighs 45lbs and stands at 134cm. She is on supplements to bulk her out but they seem to being going straight through her, just like her food does. And she does pack it away, that little mite. Eats like a King and can't bulk out. Unlike her mother!

There has also been a breakthrough with her mental abilities and we are waiting for an appointment with CAHMS. There are signs that indicate that Ellie has Aspergers Syndrome but Im leaning on the thought that she has a mild form of Autism. Either way, we shall find out soon enough.

She still needs the use of her wheelchair which is a great comfort to her. Although I must point out that the other week, when we went to New Brighton and my blog photos of Ellie did not show that she was in her chair?? An anonymous comment was left on my blog from a rather sarcastic meany individual who exclaimed how wonderful it was that she no longer needed it. Let me remind some individuals that just because a child does not need a wheelchair on a beach (which is impossible to propel) doesn't mean she is indeed cured of her walking issues. My husband and I have great use of our arms and shoulders to carry her in/on. Its bad enough she gets judged when she is in it let alone out of it, thank you very much.

So now I have to wait until next June to discuss the Osteo and Myokymia and also talk about any solutions for the scoliosis. NEXT JUNE? Good grief, that's such a long time to have ten minutes with the man you put your trust in :(

Rant over until at least June 2011 :)
Thanks for listening x

22 comments:

Fiona said...

Hi Kirsty,
Can quite understand your 'rant'. You have my sympathies, after dealing with the NHS for so long you must feel like banging your head against the wall in frustration.
Life is s*** sometimes eh?
Anyway, sending positive vibes your way but rant away any time you like girl.

xx

Anonymous said...

You rant all you want. It's your blog... :-D
I can't believe someone could be so mean as to leave a comment like that on your blog; people just have no idea sometimes, do they? As parents we often need to rant.
I am so proud at the moment - my 23 year old Aspergers son, who hadn't left the house alone until 2 years ago, has just returned from a holiday in the States (all on his own) to meet a lovely young lady he met on the internet. My baby is all growed up and independant! Yours will be before you know where you are. :-) Jude.x

Helena said...

I really know where you're coming from! I am looking after my mum- totally different from caring for your own child, I know, but the doctors are just as frustrating!!!

I thought she had epilepsy, an after effect of mini-strokes. Then after a 10 month wait for a neurologist I'm told it's vascular dementia. I could have died twice over, fallen through the floor, you name it, I just wasn't prepared for that one.

Then she suggested some pills that might help, albeit temporarily, but she has to see a clinical psychologist first- oh, and that's another 10 month long waiting list. By which time so much of her memory might have gone, so it mya be too late....

I shall hope for a breakthrough for you and send lots of positive thoughts your way. If you get arrested for kicking a doctor up the arse and need a character witness, give me a call.

Helena said...

Oh, mum has osteo too. Then she goes climbing on chairs to adjust the curtains arghhhhhhhhhh.......

Sue Ramsay said...

Ahhhhh it sucks, to put it mildly my Angel doesnt it xxxxx
I hope the SENCO at school is battling alongside you, its amazing the differnece a good SENCO can make to things. One extra person to push things along never comes in wrong. We are all somewhere on the Autistic Spectrum, thats the message I pass on to a lot of parents so it doesnt have to be a lonely place if you think of it in that way. Am here anytime, you know that Angel and sod the small minded people that leave STUPID comments, theyre the ones with the problems. xxxxxxxx

Anonymous said...

Sending such gigantic {{{{{{Hugs}}}}} - That is much too long to wait. It really is. Rant away - I think it helps at times.
RobynS in Savannah,GA.

Andi (RrlScrapGal) said...

Another mom sending you big hugs... What a nightmare! I wish you had access to more doctors and right away.. I can not imagine having to wait that long...

Bettyann said...

You rant all you like love..we don't mind listening..I'm sorry that they are making Ellie wait till june..they should be ashamed of themselves...making a child wait so long...My SIL and I are going to try kick-boxing..I'll get a few jabs in for you...take care

Sharon said...

Sending you lots of positive hugs and love. How could someone be so spiteful as to leave a comment like that. Totally agree, they are the ones with the problem. Also agree about a good Senco pushing things along in school. Take care. XXX

SueF said...

can't begin to imagine what you've been going through all these years - I've got a pilates for beginners dvd that came free with the daily mail a few years ago, happy to send it to you if you'd like it
Sue

Julia said...

You rany all you like my lovely. I cannot imagine what you are going through but I do know my Daughter has battled for along time with her eldest son and honestly got no-where fast!!!!!

Constantina said...

I don't think that ANYONE, and I mean ANYONE can put themselves in your shoes Kirsty. I think it must be a living hell not knowing what exactly is wrong with your daughter and then to get treated the way you do by the medical system. What makes the doctors think that it is ok to see a young girl live her life like that. I don't mean she isn't happy, far from it, I mean when the doctors see her don't they think they really need to make an effort to find out what is going on. How can they sleep at night? I can only imagine how frustrated and angry you are, but also extremely sad. I hope that one day you will get your answers, the not knowing must be the worst.

Sue said...

It is disgraceful that you are having to wait till June to know more. What on earth is going to take that length of time???

Do you have a PALS office at the hospital? I found them very helpful with an issue regarding my mum's care.

One thing I know for sure, with a mum like you Ellie is going to go far. What a wonderful young lady she is growing up to be. She's obviously going to have hurdles in her life, but you are teaching her just how to jump them.

I am sending you and Ellie huge hugs (((Kirsty & Ellie))).

Toni said...

Kirsty rant away I know how you feel my son is twelve and has cerebal palsy amongst other problems I get frustrated with appointments and different doctors that decide they wil act on something but then expect us to ferry Aidan across the region knowing full well he cannot walk far Im often left banging my head against a brick wall
Im hoping things turn more positive for you Toni xxx

Rach said...

I understand your frustrations hun I really do. Pete has osteoporosis, he was diagnosed a few years ago now. It has not caused any problems so far but we will be having another scan very soon, or so they said at the last appointment so we will find out the latest then. He takes calcium supplements and Vitamin D and has just started on another tablet 2 weeks ago which apparently bulks the bones back up. Like Ellie though he doesn't take much out of his food so heaven knows how much use these supplements are. He has to have iron intravenously as the tablets do nothing. Walking is supposed to be good for it. I know Ellie can't do an awful lot of walking but any will help. We try and go for 2 smaller walks a day which we know are more manageable for Pete than one larger one.

Mandy said...

I wish I could could just give you a big hug and we could have a tear fest together.I have a feeling i kinda know what your going thru it seems every DR visit and test shows something new with my Mav too we've been told that they will never get to the bottom of all his problems he's a complicated case without answers to all the why's. It's so frustrating!
Anywhoo big hugs to you and your sweet girl! If you need to chat let me know I'm a good listener and shoulder to cry on.xx

Anonymous said...

CAN'T SOMEBODY, SOMEWHERE HELP!!!!!
- NOT NEXT JUNE BUT NOW. If only I were wealthy, I'd pay for you to take Ellie and see someone privately and get all the tests done and not stop until it was all understood and the correct treatment started and diagnosis done. What is wrong with the NHS in this instance. Sometimes they are great and you can't praise them enough and other times....

Anonymous said...

I don't want to sound harsh but a lot of people have come on here and commented on a family member having an illness etc. Yes, it is very sad that there are a lot of people suffering and fighting but at least they know exactly what they have.

'Dealing with an illness because the person has been diagnosed is a much better place to be than someone who hasn't'.

I cannot begin to imagine what it is like for Kirsty, this isn't her mother, father, aunt, uncle etc this is her child!

Debsg said...

Rant away! I have a friend whose daughter has scoliosis and wore a leather 'jacket' under her clothes for years. Hope you get the answers you need soon xx

*reyanna klein* said...

Next June?!??! Holy shit! I'm so sorry! Actually, I'm terribly sorry to hear all this. My heart is just so sad for you guys having to go through this! I so wish that I could fly you guys out here and pay for the very best medical treatment for her! I'm just believing that you will get answers... soon! You guys are in my thoughts and prayers. Love you all! :-)

Candace said...

Know how you feel - been there since 2007 - well to be honest I'm still here battling away for a diagnosis!

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