Good news for a change

[StevieM]

Hi All,

Just wanted to share some good news :)

Those of you who know me will be aware that my 12yr old daughter Robyn has SLE, and that she has a younger sister Katie who is 9. There has been a concern over whether or not Katie also has SLE or JA, due to joint pain and swelling recently........

well we saw the paed today who says she has hypermobility (like her sister) and it is that and that alone causing the pain etc ;) so no SLE.

Hope you are all well,

love Steph

[Joandublin]

Hi Stephanie:)

Its great to hear from you and what wonderful news:) You must be so relieved. Can they help with pain relief for the hypermobility?

Have you seen this pinned on the Paedatric Forum by Clare?

http://rheumatology.oxfordjournals.org/cgi/content/full/40/5/485

I hope Robyn is doing well and you havent had too many A & E visits:worried:

Take care
Luv n stuff
Joan:rose:

[lupus chick]

it mut be good to know whats happening so now you can deal with it together.i have a niece who also has hypermobility from what ive been told its caused by the joints etc been that little bit more flexible so at times they can be over stretched kinda thing. my niece who is 10 copes reasonably well with it. she does normal stuff like kids her age really its just some physical education she cant take part in because it becomes too much for her. wishing you all the best for the hope theres not too many flare ups for katie

[Lily]

Hi Steph,

That must be somewhat of a relief for you! :hugbetter: Its not good she has this, but it sure beats a Lupus diagnosis at age 9. We will have to catch up in chat sometime soon, life has been pretty hectic around here lately.

I hope your eldest daughter is doing ok right now too.

love
Lily

[helloos]

Great news to hear.

I hope that both your daughters receive proper treatment and feel much better.

What a relief.

[ALWIN]

StevieM

Good news indeed!

I hope she got some good advice to help her reduce the pain episodes - protecting her joints, etc. I used to get a lot of achiness just from hypermobile fingers when I was young - my knuckle joints bend the opposite way - looks gross, so I kept repeatedly showing my friends at school - bad move!

I'm sorry to butt in, but I might forget to ask otherwise ... I have a 14 year old daughter with the same name as yours. She began to suffer from a lot of headaches when her periods began - has them for a couple of days before and during, gets tired and achy.

It is taking a great deal of willpower not to take her to the doctors for a check up, because of my own history of APLsyndrome and (distant) family history of SLE and migraine.

Am I doing the right thing, or should I take her along anyway?

She seems to be ok for the rest of the month, so I've been hoping it's simply headache / pmt and waiting to see if it improves spontaneously with her being so young. I know she would be acutely embarassed if we were to discuss her menstrual cycle with a doctor (or anybody else for that matter).


Alwin

[StevieM]

Hi All,

Thank you all for your kind words.

Just wanted to reply to Alwin and say for your own peace of mind take your daughter to the GP.

You are right that it may well just be related to her periods....but as we all know hormones play a large role in SLE etc. Any decent GP seeing her family history will not think twice about having blood tests done, as a simple blood test will hopefully be able to stop you worrying about her.

Love,

Steph

[ALWIN]

Thanks Stevie

Will do

Alwin