Hi all! My 13 year old daughter had some blood tests after developing Raynaud's. I'm scared too death. I don't have all the test results yet, but the nurse just called to tell me what they have back so far is normal except for the c4 complement is low (10 - the range is 16 to 59). The ANA is negative. This was the family doctor's nurse. She said wait for the rheumatology Dr. to get all the results back and not to worry, sometimes children are out of range. I'm so worried about lupus. From everything I read, that seems to be what low C4 indicates. Can any of you offer any info? Especially something that is encouraging? I'm so afraid that this is early lupus that just isn't showing up in her ANA yet. I'm so scared for her. I just can't help wonder why I developed Sjogren's and now this, all in one year.
Thanks everyone.
Scared and shaking,
Cathy
Hi Cathy
I can't help you with blood results, but I can send you and your daughter positive vibes and prayers for a good outcome.
Kathyx
Thanks Kathyx. I'm so scared I'm now in tears.
Hi Cathy:
It is way more scary to deal with our kids' medical issues than our own, isn't it? I would take the nurse's advice and wait until you speak with the rheumatologist before getting caught up in the scariest scenarios. Try to find something else to keep your mind occupied while you are waiting. For me, it is always a good time to clean out the closets or garage. This is not just for your own sake, but so you don't let your daughter pick up on your fear. You don't know anything yet except this blood test result, and the fact that everything else is in the normal range is an excellent sign.
As I understand it, while the correlation between C4 deficiency and Lupus is pretty high, it is not anything like 100%, particularly in children. Also, C4 complement deficiency tends to relate to a milder form of Lupus that does not affect the kidneys. Again, not 100%, but a strong correlation. I am not a medical person by any means, but that's what I got from reading some of the internet medical sites I respect. That would be enough to allow me to loosen the grip of fear and wait for the rheumatologist to weigh in, especially since the other bloodwork is normal.
Take care - we will be thinking of you both, and hoping alongside of you that this is not a big deal at this point.
Genko
Sorry for your fears and pain, I am not a mother but can imagine no mom wants their baby to be sick. There is one thing I can offer....even if it is lupus and who knows if it is even, your daughter is young. It has been my experiance that when someone is diagnosed young with a chronic illness they are much better able to learn and cope than someone who is diagnosed at middle age. I was diagnosed finally at age 18 finally and after years of feeling pretty crappy and it was in fact a bit of a relief for me. At least i knew what was going on and that it had nothing to do with who I was as a person. Then I went through a learning curve which was not the easiest thing, and learned what my body could do and couldn't and what i had to do and not to do to feel and be my best. In my mind I made my body and the illness my own dear little sick kid that only a mother could love and took care of it when it cried out, thus the giving in when i had to really helped me take care of myself. I still do that to this day and I am 46 and very happy and lead a full life. Now at age 46 I see many people my age or older that are getting sick for the first time and they just simply can't deal with it! The stress of fighting something you can't fight and win just makes the illness worse, the learning curve is much, much more difficult at middle age or older.
Children adapt so much better and they don't have time for the anxiety and anger, because well there are boys to think about and shopping and school and life.
Of coarse I sure hope everything turns out ok and she will be well forever but if it doesn't the last thing she needs is gloom and doom, she'll need education #1 and a shoulder for awhile till she gets familiar, that's a better job for a loving mom than being terrified. What will be will be and what is made from it is the only choice we have. She'll do great no matter what because she has a loving mom!
All the best Sandra
Hi Kathy,
This is a scarey time for you I know, but try not to let you daughter see you so fearful. As Genko suggested, make yourself busy and try to wait for the rheumatologists report before you drive yourself crazy.
I won't tell you not to worry, it's not possible. I'm a Mother myself and I know the fear that went through me when my son was dx'd with Hodgkins. I spent 3 days in absolute terror until further tests proved it was only an infection from a welding burn he received in school. Those were 3 of the worse days of my life.
Please try not to think of the worse and remember things may not always be what they seem. Children are resilent and they handle things a lot better than we do.
Let us know when you hear from the rheumy, we will keep you and she in our prayers and thoughts.
Hugs, Pooh
Hi Kathy,
When my son was little I had to take him to be tested for cyctic fibrosis. I was scared too but until I had the facts I was not going to get caught up in unfounded worry. The sweat test came out negative. He is now 29 and getting married in April. There is no sense in worrying about something you don't know is true.
Tuckerdog
Thanks everyone. I wish I could say that I'm a little less scared, but I'm not. The high correlation between c4 deficiency and lupus is scary. 13 is just so young to start all of this.
I really appreciate all your kind words. Thank you so much. I'll TRY to wait for the remaining blood tests to come in, but I'm even more nervous for those now.
God Bless you all!
Cathy
Hi Cathy and welcome...I endorse what all the other have said but even if it's Lupus your daughter will be OK. I know this is difficult to take in right now when you're very anxious and worried. I have 2 daughters 21 and 23 and they've both got features of autoimmune conditions, although they haven't been tested, one has IBS the other has a form of CFS (Chronic fatigue syndrome, which she's had since her teens) but she plays hockey.
I must tell you about a friend of mine (she's 38) who has had Lupus and Sjogrens for a long time. The Sjogrens was diagnosed in her mid 20's (they didn't test for Lupus) back then ::) but when she was tested a bit later on, she was positive for it. Now, she reckons that she had the Lupus in her early teens when she had Raynard's! She went on to university and became an art teacher, travelled met her husband, taught, then had her 3 children who are now 9, 7 and 5. All are well including my friend, (although she has her 'off days' like we all do) and she teaches part time from home. She was my inspiration when I first developed these dryness symptoms and has helped me in so many ways (and I help her too) :). I know she worries about her own children now as well, especially her 2 daughters. My friend didn't need to go onto medication for a long time (plaquinel) and she does take long breaks from it.
I know you're very worried about your daughters results and I hope all the results turn out well. I know that there are members of the population that have positive ANA's etc and don't develop anything. There are also those of us who show negative but have autoimmune issues, so it's very complicated. Lupus and Sjogrens vary so much from person to person and they're not always progressive either. Please know that whatever the outcome, you and your daughter will be fine and please keep talking to us so we can help you :)
Hugs and take care,xx
Lesley (New Zealand)
cathy
what i do when im this upset is set a time period, get the house to myself , crawl into my bed head under the covers and cry, and i so mean sob, i use a buddhist tequnique i see my pain as a flame in my mind , a candle flame , i let it grow in my mind, let it become a camp fire , i feel the heat of the pain and rage and fear allow it to truly wash over me, then i let it go, in my mind i through water over it, and i imagine it all gone, i run a hot bath and steep, and then i let it go, accept that i am human i have feeling, give them proper due an not bottle them up, then i get dried dressed and so listen to some soothing music and water my plants , talk to my cat and say what will be will be and i ll get the strenght to do it. holding you both in light in my thoughts. My 13 years old has a pernamently blocked nose has done for a few years now, and my 9 year old now has bilateral ear infections this week, i am paranoid , newly diagnosed and trying to take life a day at a time, the crying and bath has worked for me, try to find somethign that makes you happy and wash yourself in it .
T x
Lesley,
Thank you so much for your post. That gave me so much comfort. I have read and re-read your message several times and it really helps me feel better. It's so nice to hear about people with Lupus living "normal" lives. I'm still hoping Jessica won't develop lupus, but if she does, I can be hopeful. THANK YOU, THANK YOU, THANK YOU!
Tx - thanks for the coping strategies. I might just try that when it all gets to be too much!
Cathy
Cathy,
I sure hope and pray that your daughter does not have lupus. I know what it feels like to have children go thru scary possible medical diagnosis. There is just nothing like a mother's love which also causes us a lot of anguish when our children face crisis.
Keep us posted.
Anna
Cathy - it just occurred to me you might like to read Elise's diary. She is a few years younger than your daughter and you'll see how amazingly she's coped with what's been thrown at her.
take care - Scottie :)
Hi again Cathy, Elises diary contains some scary stuff as she was quite sick for a while, most of the young ones don't have issues as serious as hers. She has Sjogrens, (not Lupus to my knowledge) so has all the dryness things to contend with as well. It's good to hear that Elise is doing much better now and is writing her own posts :)
Some people who have Lupus also go on to have Sjogrens as a secondary issue but it's not usually as bad as the primary Sjogrens. I think both my friend and I have secondary Sjogrens as our dryness issues aren't too bad. My friend says her dryness issues are about the same as when she was first diagnosed with Sjogrens about 16 years ago!
Cheers, Lesley (NZ)
Cathy,
Do you have any more news? If nothing else shows up, I would have them repeat the C4 study. What everyone on the forum might not know is that Jess has had some symptoms so probably there is a good chance something "autoimmune" is going on.
I also wonder why you both are manifesting at the same time.
Living in Northern MN (in a very small town) I've not met anyone else with Sjogren's Syndrome. However, I just went down to Texas for a month and found 3 of my mother's neighbors and one co-worker have it! Why? It would be nice to know more about these diseases and how they are spread.
I'm so so sorry for this and for your daughter! Geeze!
Praying for a cure!
Janna
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
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
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
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.
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
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
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?