The (not so old) Crocks Cafe -Part 2

Trialia

needing-help wrote: »

Trialia I'm really not sure what to do now. I spoke to my GP who said he wouldn't have called it growing pains. He said she is definitely hypermobile and he will refer her to physio but doubts it will help. GP said she will grow out of it.

That's the problem. *sighs* If it is HMS or HEDS, she won't grow out of it, and if they don't catch it early it'll only get worse. I'm sorry to be a downer, but keep fighting: the specialist who diagnosed me said if I'd been caught ten years earlier instead of being brushed off with 'growing pains', I wouldn't be in anything like as bad a state as I am now. Good luck to you both. It's not an easy fight.

SingleSue

needing-help wrote: »

Not posted for a while, been feeling very down and not done much apart from sit and stare at the wall:(

I took my daughter to see the paediatrician at our local hospital and he agreed there was some hpermobility (she showed him how she can put her feet on her head!) He measured her arm span then announced all her clicking and pain was down to growing pains and he would see her in 6 months but it should have sorted itself by then.

This has been happening for quite a long time now so if it was growing pains she should be 7 foot by now.
I am really not happy and feel a bit fobbed off. I hate seeing my daughter in pain but I don't know what to do now:(

Sorry for my whinge and hope you are all battling on ok. Think I will go off to my cave now.

x

Another sigh here....I was written off as an over protective mother because eldest was having 'growing pains', coupled with dizzy/faintness spells and chest pains.

Fast forward quite a few years to when joints started to dislocate properly and he was finally diagnosed with EDS, a heart murmur and POTS...this was thanks to a locum doctor who finally referred him, his usual GP refused to! The damage has been so great that they have warned he could be wheelchair bound by his mid twenties, he has special permission to use the lifts at school (he is in 6th form which is attached to a normal school) as his hips dislocate going up and down the steps there and has to use a laptop for his exams as his fingers and wrists dislocate whilst writing.

Please, please don't be palmed off.....I allowed myself to be as I thought they were the experts and feel tremendous guilt over it now.

LameWolf

I so agree about not letting yourself get palmed off. But SingleSue honey, don't beat yourself up so! You did what you thought was the best thing at the time; we all of us tend to think that they guys paid to be experts actually are experts. (((HUG)))

juno wrote: »

Have you all heard we're sub standard citizens and do not deserve to be paid much as other people?

I am so mad about this and I don't normally get into politics!

By this MP's standards then, Prof Stephen Hawking should be paid less than the minimum wage.....:cool::mad:
I will not get on my soapbox..... I will NOT get on my soapbox......:D

Erme

LameWolf wrote: »

I so agree about not letting yourself get palmed off. But SingleSue honey, don't beat yourself up so! You did what you thought was the best thing at the time; we all of us tend to think that they guys paid to be experts actually are experts. (((HUG)))


By this MP's standards then, Prof Stephen Hawking should be paid less than the minimum wage.....:cool::mad:
I will not get on my soapbox..... I will NOT get on my soapbox......:D

:rotfl:

Anyhow just to announce I'm a week off the cigs (just over) on the e-cig

Right amount of nicotine and it can be done ...Bah humbug any low dose NRT!!!!

No psychosis (like on low dose NRT) - nothing...just a bit of tiredness from consuming less caffeine...

But this am gastritis is playing up (probably from my wee OD of 2ml @ 29mg/ml on the dual coil cartomiser) and like I stillhave the infection from the depot shot so I ought to phone the medics soon (in fact the lump is getting bigger)

E

needing-help

Singlesue I'm sorry I didn't mean to make you feel guilty. If it hadn't been for you and Trialia I would have just believed what the doc said and waited for her to grow out of it so thank you both.

It's interesting you mention about the chest pain, my daughter regularly says her heart hurts!
The trouble is I don't know where I go from here, I wish we could afford to go private but we can't and that makes me feel bad:(

Lamewolf I hope you've got a big soapbox so we can all get on there with you.

Erme Well done on giving up the cigs:T Hope you feel better soon.

soolin

Erme, well done on the giving up. You should be extremely proud of yoruself.

SingleSue

needing-help wrote: »

Singlesue I'm sorry I didn't mean to make you feel guilty. If it hadn't been for you and Trialia I would have just believed what the doc said and waited for her to grow out of it so thank you both.

It's interesting you mention about the chest pain, my daughter regularly says her heart hurts!
The trouble is I don't know where I go from here, I wish we could afford to go private but we can't and that makes me feel bad:(

Lamewolf I hope you've got a big soapbox so we can all get on there with you.

Erme Well done on giving up the cigs:T Hope you feel better soon.

Aww...no it wasn't you that made me feel guilty, it was the believing the doctors that there was nothing wrong with eldest and then discovering I should have been pushing harder that did.

As I said in my post, we got lucky that one day we had a locum who did take it seriously and referred eldest up to the hospital because she suspected Marfans (he does have a very marfanoid look to him)...and then had a paediatrician who took our concerns seriously.

formaldehyde_perfume

Today I was going to have a nice lazy day, maybe do a bit of jewellery making, but then my mum rang and reminded me that I have to go and see the dermatologist at 3pm so I had to go and have a shower and get dressed and now I'm knackered. I've had 3 energy drinks and extra pain killers but I can't seem to get the motivation to shift my bum off the sofa.

Nevermind, hopefully I'll get the results I want and it will be worth it.

SingleSue

I've given in today and rung up for a blue badge application form......not saying I will go through with actually filling it in, but it is a step forward in my thinking.

Jojo_the_Tightfisted

singlesue wrote: »

i've given in today and rung up for a blue badge application form......not saying i will go through with actually filling it in, but it is a step forward in my thinking.

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