Should I be worried?

Hello to everyone. I am a newbie on the Hughes forum but have been a member on the Lupus forum for a few years. I would like to ask you all a question if you don't mind please.

It is about my 6 year old daughter. She had to have a repeat blood test as in May she had depleated a WBC. The blood test was repeated last week and everything else was ok EXCEPT she tested positive for Antiphospholipid antibodies, negative ANA. I wanted to know if I should be concerned? I have Lupus and there are alot of auto immune problems in the family. My daughter has many problems of her own from deafness,eyesight problems, hypermobility and extreme balance issues.

The doctor wants to repeat the test in 3 months time. But I am due to see my Rheumatologist on Wednesday and wonder if it would be worthwhile mentioning it to her?

Please don't think i am an overbearing mum, I am just worried.

I would be grateful for any replies. Thank u all.

Esky x

10 Replies

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  • Hi Esky,

    No one is medical trained on this site (we have APS though) so I can only answer you from my personal point of view.

    I can understand that you are worried. I think you should talk to your Rheumatologist who may understand APS also. Your daughter may have symptoms as well as positive antibodies for APS. Both Lupus and APS are rheumatological illnesses.

    Good luck and best wishes from Kerstin in Stockholm

  • Thank you Kerstin. I will speak to her on Wednesday. All the best x

  • Hello Esky

    Kirsten has given you the right answers here.

    Certainly talk to your Rheumatologist and also familiarise yourself with our charity's website:

    hughes-syndrome.org

    Let us know how you get on.

    Best wishes and good luck.

    Dave

  • Thank you for your reply. I will definitely check out the website too. X

  • Hi Esky

    If you have APS and autoimmune conditions are common in your family, I would take a copy of your daughters results along with you and "just" mention it if the doctor you are seeing is an APS specialist.

    You are not an overbearing Mum and it would be very natural to be worried so I hope your mind can be put at rest!

    Please let us know how you get on.

  • I had somewhat similiar experience. Took my 13 yr old daighter to dermotologist for various rashes. She was stumped until I said autoimmine issues, she tested for them and found positive tests. My daughter now treats at Seattle Children's Hospital and has APS. They believe she will develop SLE too based on other labs, and she has Hasimoto's thyroid.. I have SLE and APS. I also had a mother's inuition that something was wrong! Use it to help your daughter. You should be tested for APS as well, probably 50% chance you do have it...

    Best of Luck! Lisa

  • Hi Lisa

    Thank you for your reply. It has been mentioned to me that the hospital think that she has an autoimmune condition as they cannot find answers to her hearing loss and poor vision - don't really think they have a clue at the moment. I feel that there is more than what meets the eye with my daughter. There has been marked deterioration in her eyesight and the amount of pain she is getting from her hyper mobility. It feels like déjà vu with how it all started to come together with me. I have been tested for APS but I'm negative, they just cannot get the lupus under control. I am keeping fingers crossed though. Thank you for your replying means a lot

    Hugs Esky x

  • Hi, both my daughter and I have blurry vision, severe at times, headaches, migraines and joint laxity. It really sucks. I also found out three of my cousins have SLE or APS and now my brother has had 5 blood clots...probably APS. Stay strong, you are a very good mom!

    Don't forget you could be sero negative meaning you have APS but don't test postive for it. They are getting new lab tests for that soon.

    Hang in there!! Lisa

  • Thank you Lisa for your kind reply. I am determined to stay positive ;). I am sorry to hear that your family and yourself have these health problems. You and your family are in my thoughts and prayers. Thank you for your support it means a lot and you have really cheered me up. Thank u xx

    Hugs Esky xx

  • Hi Guys

    Just a comment to let you know what my Rheumatologist said today. She has stated that She understands why I am concerned. She has contacted my daughters Paediatrician for her to repeat My daughters blood test in 12 weeks time. My Rheumy wants to know the results, and she has stated that because of my history if the result is positive she will arrange for my daughter to be seen urgently by a paediatric rheumatologist.

    I am still anxious as we have a 10 weeks wait before blood test, but thankful for all the support and care that has been shown by yourselves and the help received by my Rheumy. Thank you all. I will let you all know the result, fingers crossed.

    Thank you ever so much guys

    Love and hugs Esky xx

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