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hi im a newbie :) - Carers UK Forum

hi im a newbie :)

Tell us a bit about yourself here.
Hi to everyone

I was a member here several years ago, when I was carer for my gran. Sadly we lost her june 2011.
However I am back with a new account, as I am caring for my 14 year old daughter, who was just 4 weeks ago, diagnosed with Ehlers-Danlos Syndrome Hypermobility Type. I am still taking in the diagnosis, but am glad to be over the initial shock phase.
My daughter was a healthy teen until she started having symptoms last year. This year she has been hospitalised 6 times with severe muscle spasms. She has also experienced severe mobility issues, and now sometimes needs to use a wheelchair. Its been a stressful year to say the least, and my daughter has really been through the mill with chronic pain. The last week, her mobility is improving again and her pain is always there, but bearable at the moment, which is great.
I live with my husband and 2 daughters, 14yrs and 9yrs, the diagnosis, and also seeing my girl in so much pain and reduced mobility has had a major impact on us as a family.
I wanted to come back to carers uk forums, because I know from past experience how helpful it is to chat with people in similar situations, and to reduce the isolated feeling that we all now carers can so often feel. Thanks for reading my post Image
Welcome back Becky-Jane, happy to see you Image But also sad that you have a need to come back Image

Hope your daughter is getting the right treatment and physio for her condition and that her mobility continues to improve Image
Hello Becky-Jane - good to have members return to the forum but so sorry re the circumstances. Sounds like your daughter is really going through the wars and it must be awful I'm sure to see her in pain. Its hard when a child is suffering and there is nothing that a parent can do to take away the pain.

No change here - still loads of support for you and advice where possible too! Welcome back.

Bell x
Hi Becky-Jane
Ive joined since you left, so I dont know you from when you were last here, but welcome back. I too have found loads of support and help here. Its good that your daughters mobility is improving and I hope she continues to improve. xx
Welcome back, but under the circumstance, sorry to see you. Image
But as you know, we're here for you Image
and a welcome from me, too, becky jayne. Sorry about your daughter.
Phoebe x
Hey, thankyou everyone for your lovely welcome. Yes my daughter is currently having physio and hydrotherapy every week. We are also waiting to hear from a referral made by the rheumatologist who diagnosed my daughter, to The Royal Hospital in Bath. We have been told to expect to be there this month, but so far heard nothing.
My daughter and I (only one parent can stay with her), will be spending 3 weeks in this special hospital, where she will get lots of treatments all under 1 roof. Im not looking forward to having our little family split up even though I know how important this hospital stay will be for my eldest.
I would love to hear of anybody who has experienced a similar stay at this hospital, We have yet to be told what to expect. I know there will be intense physio/hydro, a rheumatologist DR, CAMHS, and chronic pain management team, and that is all I know for now.
Thanks everyone Image
To Bell

Yes it has been a very testing time to say the least. Whilst I am greatful my daughters condition is not life threatening, I have literally been taken to the brink, having to watch her in excruciating pain for hours on end. I became extremely distressed the last time, but I am hoping if im in a similar situation again, that I can be stronger and braver for my daughter. I try to keep thinking at the time......IT WILL END, the pain WILL finally end. It is horrific to watch and feel so useless.
Also the DRs end up thinking Im a crazy parent, but I just couldnt help it at the time. I will try to learn from it Image
Have you Googled the hospital? I had a weekend in Bath earlier this year, the hospital is in the middle of town, which is steeped in history. I think it's a World Heritage site.
My Hubby has Joint hypermobility syndrome, as does our 15yr old Daughter.
DD's joints pop out regularly and seeing her in pain is just so difficult.
We have been lucky to find a really good specialist Physio for DD, and slowly the muscles are getting stronger, in turn keeping the joints a little more stable.
It took over 10 years for Hubby to be diagnosed, this resulted in muscle wastage and depression, because of constant pain his mobility is very poor.
I am forever keeping fingers crossed that DD's diagnosis was early enough for her not to get as bad as her Dad.
One really good website I found was the HMSA, so much good advice and there are quite a few people who have been to the Bath hospital, there is a forum to chat with other sufferers/parents.
Could you let us know how your DD gets on?
Very best wishes