Hello everyone. My child isn't able to use hands due to pain, and school aren't being supportive

TartanTeapot

Hi there I am TartanTeapot. Not great with IT, I joined yesterday but didn’t manage to introduce myself. Hopefully I have pressed the right buttons this time! 

I’ve got a raft of medical stuff which manifests as being tired, in chronic pain, and quickly fatigued.  My main worry at the moment is how to support our 17yr old who is going into Y13 (A levels) not being able to use their hands due to pain. It was bad enough me being sore for decades but it breaks my heart to see my child in pain, stressed and depressed, and the school not giving much support...

janer1967

Hi and welcome to the community Feel free to join in or ask any questions 

Thanks for sharing with us about yourself and I am sorry your child is struggling 

TartanTeapot

Thank you  @janer1967
It is good to be here-

Tori_Scope

Welcome to the community @TartanTeapot I'm sorry to hear that your child is finding it difficult to use her hands at the moment.

Is this something their doctor is aware of? Is it being investigated?

I was also sorry to read that the school aren't being supportive. Who have you tried speaking to, and what did they say? 

chiarieds

Hi @TartanTeapot - welcome to the community, & thank you for joining. I can understand that despite your own troubles, seeing your child with issues is even worse, especially as they're not receiving the level of support they need with their school. I would echo the queries above.

leeCal

Hi and welcome @TartanTeapot, best wishes ?

TartanTeapot

thanks all, and hi @Tori_Scope-

we are working our way through rheumatology. The last one wasn’t going to listen to me when I explained that E had the same hereditary symptoms at roughly the same time that I did. I contacted “my” rheumy, who has been seeing me for 7 or 8;years, and he agreed to take over the case. We are seeing him at the end of September.

the school doesn’t seem to be set up for much more than a broken arm or leg. To be fair, E doesn’t have an official diagnosis, and that seems to be an important stage in getting help.  I think E needs software to drive his computer, so he doesn’t need to type. I know a little about voice recognition, but something to work photography software/ image manipulation too? I am lost, the school is lost... I have a naive belief that a new term and an official letter from the consultant might help, but any advice on appropriate kit would be gratefully received. (I *think* I have asked on the tech help discussion page but I might have just tagged a note onto someone else’s discussion...)

thank you for the interest. It is great to find somewhere to speak without worrying about if I am moaning, or where people have no clue what to say...

TartanTeapot

cozyplants

Hi @TartanTeapot, I just wanted to chime in. I first want to say that I can't imagine how difficult it is for you to see E struggling. As a disabled 17yr old with a disabled mum, I watned to let you know that having a parent that can truly empathise can be such a wonderful thing. I know it must be so difficult for the both of you, but I'm so glad E has such a supportive parent. 
I'm also still fighting for a diagnosis. I have been unwell since I was 14 and have similar symptoms to my mum (chronic fatigue, chronic pain, migraines, unstable joins and much more). It can be exhuasting fightiing for answers, especially when you're a teenager and your friends don't quite understand. I truly hope that you and E can get some answers and support soon, especially with school. I've been out of education since I was 14 due to a variety of health conditions, so I can't fully relate, but I do have experience with schools that aren't accessible in many ways. 

But anyway, this was a longwinded way to say that you and E are not alone, there are many of us in somewhat similar situations. Don't give up! As tiring as it can be, E deserves the right diagnosis and help. I really hope he gets that soon! 

Much love and support.

TartanTeapot

@cozyplants thank you, that really helps.  I really appreciate your time and effort in replying... it feels like a long haul. Sorry to be brief- multi tasking :-)
it is nice to hear from another perspective...
love and support back at you-

chiarieds

Hi @TartanTeapot - just to add must admit when I read your first post I wondered if it was a hereditary disorder that you & your son were suffering from. It's good you have heard from @cozyplants as a young person with a disabled Mum, who can relate from their perspective.

As a parent, who has passed on my genetic disorder to my children & 3 grandchildren, I agree totally with cozyplants. Altho we're all different (& depending on how your genetic disorder is transmitted, there can be variable expression even in the same family), because of the genetic disorder we share we do 'get' each other. I didn't realise 'what' was going on until my eldest daughter & son also experienced similar problems I'd faced at about the same age too.

I do hope you get some answers with your son's rheumatology appointment, &, as a parent, it's great you are fighting for a diagnosis & he will see a rheumatologist with some understanding due to yourself.

@cozyplants -  you mention unstable ?hypermobile joints.....my family's genetic disorder is the hypermobile type of Ehlers-Danlos Syndrome, which may not be relevant of course, but I wonder if this has been looked into (or Hypermobility Spectrum Disorder). You can find some info here: https://www.ehlers-danlos.org/    Just adding this as a 'just in case' thought from my personal experience. My best wishes to you both.

cozyplants

@chiarieds, unfortunately I haven't been taken seriously by many doctors. I have only just got a referral to neurology, after 3yrs. It's been a really long and painful process to try and get a diagnosis. Since I moved to Scotland, it's been so much worse: local rheumatology and physio won't see me, even though I'm under a rheumatologist in UCLH. I have wondered if EDS was a possibility, but having got nowhere so far and being treated badly by doctors, I'm too scared to mention possible diagnosis. I also fit a lot of boxes of MS, which is why I'm (hopefully) going to see a neurologist. If there isn't an MS diagnosis, I may ask about seeing a geneticist to investigate EDS, but I doubt I will get the referral. But fingers crossed whatever it is, is diagnosed soon. I'm so tired of this haha 

chiarieds

I'm so sorry Drs haven't taken you seriously, but having gone the gamut of seeing rheumatologists, neurologists, neurosurgeons, neuroradiologists & geneticists, I do appreciate how frustrating trying to get a diagnosis can be. My GP was however very good, & gave me referrals to different specialists. It possibly helped that I'm a physio, so my concerns were taken seriously, yet I found about EDS from my own research, then had to find a geneticist to confirm this. Our family is also more affected by neurological problems, which can occur in a few of us with EDS, which further complicated things.

You're wise to check one thing at a time to either rule it in/out, so I hope you get an answer either way from the neurologist. Be brave & mention EDS to them too, as they could arrange an appropriate referral if needed. Please also see the GP's toolkit on EDS, which indicates that it can be so much more than hypermobile joints, & more is being learnt about EDS, & its associations all the time; the hypermobile type being considered as a multi-system disorder: https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx

Please kindly let us know how you get on, & keep fighting to get answers.

cozyplants

@chiarieds thank you so much for this. If I get to see a neurologist I will mention EDS. I know a littlw about it but I'll be sure to read up a bit more so I'm well informed before. The link you've shared is so, so useful. That'll be some of my reafding over the next few weeks, haha. Thank you so much and I'll keep you up to date on everything. Take care

chiarieds

Hi @cozyplants -  great you'll look into this as a 'just in case scenario.' Of course it may not be EDS, but I wonder why you were seeing a rheumatologist at UCLH in the first place, who you saw, & what clinic was this? Also why your now local rheumatologist won't see you, to say nothing much about a physio also refusing (much to my disgust)?

I'm so sorry; I too faced issues, disbelief, etc. but I was considerably older when I looked into our family's problems..... which still wasn't easy.

Just know you're doing amazingly well in trying to ascertain your problems, & I'm sure with the determination you have you will get there. You have my utmost respect, & faith in you.