Scared for my daughter

[harrigan]

Cathy - I know what you are going through and my heart goes out to you.  My daughter was diagnosed with an AI disease at 12 and has been on immunosuppressants since.  We have had countless scares with leukaemia, a side effect of the medication, but so far all is good.  She has adjusted amazingly to both the treatment and the limitations of her condition - much better than I have.  She took 2 gcses a year early and is on track to get excellent grades this year too.

Basically, what I wanted to say is that, whatever we have to cope with, we will - and the support from friends on  this forum is invaluable.  The fear and pain you feel for your daughter are very real, but you could just be worrying over something that may not happen.  Try to stay strong by sharing your dread here and witha few trusted friends, then let it go and concentrate on having fun together and showing her how to live without feeling you are waiting for the next bad news.  I mess up all the time and need to take my own advice, but at the end of the day, our daughters need us to be strong for them.  Thinking of you as you wait - let us know.  Much love from someone who has been there and is still there, Ailsa

[jjj3]

Hi all.  Thank you so much for caring and for such good advice.  Jessica doesn't even know I'm worried.  I figure there is no need to tell her she's at a higher risk for something.  I want her to enjoy her youth while she can.  All of the AI bloodwork was in the normal range, other than the C4.  Her urine test had 3 items out of range (PH, protein, RBC).  The doctor didn't seem worried (unlike me), but they are repeating the test (if she ever finishes her period, which has lasted two weeks now).  That is one of her problems, very irregular bleeding.  She was tested for numerous clotting problems, all normal.

I haven't been able to spend much time here, so I've just seen all these wonderful responses.  I thank you all from the bottom of my heart.

Cathy

[wednesday mc haggis]

cathy

thnaks for the update, we appreciate its a busy disturbing time, worry not aboput lack of posting, you keep yourself as stress free as you can ( i know easier said than done ) , thoughts with you and your daughter and family

T x

[Linda196]

Cathy, if it eases your mind at all, it's extremely common for RBC and protein to show in any urine test of a menstruating woman, unless the specimen is obtained from a catheter.

[jjj3]

Hello again.  Thanks Linda for that info.  That does make me feel better.  She wasn't menstruating at the time of the test, but perhaps there was a little blood in there.  She has been bleeding for a month now so we haven't repeated the test yet.  She is going on the pill this weekend to help get regular. 

Ailsa, thank you for sharing your situation.  I am so sorry you and your daughter are going through this.  It sounds like you are a wonderful mother and doing all the right things to give her a "normal" happy life.

Thank you everyone.

Cathy

[JJ]

Cathy,

I agree with Ailsa, My 22 year old "Nay" was diagnosed at the age of 13 with Hypothyroid and

through out the years ( bloodtesting after bloodtest like a pin cushion and med change after med change)

they could not get her leveled...she ended up with a goiter. When I was diagnosed with SJS I told her

she should get checked as well...she put it off for a while but finally did so and tested positive...

she also found an Endo that checked out her goiter and found a mass after the first Endo wouldn't

do anything. They removed her goiter and found a second mass (not cancer) thank God! Now

her Rheumy has had her get an MRI due to funny levels with thyroid, no periods, and lactating

(not pregnant) and a headache she can not get relief from...now it is a tumor they are going to

have to work on....When all of this started her sister would call to try and calm me down because

she knew I would just get all tore up..I have found when I do that it just makes me worse

and then I am in no shape to be of any help and in turn she worries about me...It is so hard

to try and hold back your fears...but I have also found that this is the place to express and

deal with them...I have my prayer chain out for you and your daughter! We as Sjogren's

patients/parents cannot afford to worry about things before we know for sure what it is. So

easy to say and hard to do, but I know this SJ family is here for you!

Hugs, JJ

[harrigan]

It is so reassuring to know there are parents as well a patients here who know what we are dealing with.  it does make me wonder how much of a family link issue there is with AI diseases as my son was diagnosed with gout at 15, which is very unusual, Kat with MMP at 12 and my Dad with polymyalgia a couple of years ago - are they all linked, and if so, why?

Anyone else's family affected like this?