Help needed

Hello

I have a 13yr old daughter has been suffering migraines since she was 5. It has been a long long battle of lots of hospital admissions and consultations trying to find out what was going on.

My daughter has had a positive reading of anticardlipon antibodies and I'm wanting to ha e her tested for this sticky blood syndrome. She has all the symptoms of this condition and finally getting some answers would be a life changer.

Can anyone recommend a specialist who can do the tests and knows about this condition in Melbourne Australia?

I'm a desperate mother wanting to find relief for my daughter.🙏🏻

14 Replies

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  • Here is a link rch.org.au/immunology/#anti... as a starter for you. I'm in Sydney but I know a while ago an Admin (I think) posted a Melbourne specialist but I haven't been able to track where it was posted. As your daughter is only 13 the RCH might be a good place to start? Hope this helps you.

  • Thankyou for your kind response xx

  • Ozchick, perhaps you were looking for this one? healthunlocked.com/hughes-s...

  • Thanks so much for your reply. I will be ringing his rooms on Monday xx

  • Thanks, Breartje-that was the one :)

  • Hi you need to go and see Dr Tim Godfrey who is a colleague of Professor Hughes; himself, and is based in Melbourne. My children have been on Aspirin since they were 10, of course always on a full stomach! MaryF

  • Thanks Mary I'm calling Monday to get an appointment. Finally get some answers will be a hugh relief as it's affected her quality of life for years.

    Thankyou

  • Hi Onamiss,

    I wonder if you also have had similar symptoms and ever been tested for HS/APS?

    Best wishes from Kerstin in Stockholm

  • Hi Kerstin thanks for your message. I don't have any symptoms and my daughter is a twin. She has a twin brother who so far doesn't have any symptoms like his sister. He gets blood noses a lot and the occasional headache but nothing like my daughter. She has debilating migraines, visual disturbance tingling sensations in her body and now the ant anticardliopn antibodies postive blood test. This has been going on for years and she has missed so much school that somedays she can't get out of bed. My sister had a stillborn due to a blood clot 9 years ago so not sure if it's related and since my daughter has started her cycle she has had a few big blood clots which I thought is strange for a 13yr old to already have. I'm not sure if I'm going up the wrong avenue but all her symptoms seem to be this and we just need help?

  • Mary, what strength? As I posted before, our 15 year old son tested positive , and his hematologist has him on jr strength. )If he misses two days the headaches return.)

    Here in the USA jr strength is 81 mg.

  • Mine were put on 75 mg twice a day in view of their symptoms but in some cases it is only 75 mg, so probably the right dose for you. MaryF

  • Also he is 6'0" tall and 148 pounds so...

    Not quite 16 yet...

    our jr strength is called " baby aspirin" here.

    We also call it "low dose aspirin " more correctly.

    It comes pre dosed in the bottle over the counter in enteric coated tablets at 81 mg strength. It's not possible to get it here at 75mg. Interesting.

  • Hi,

    I am so glad that you already has got a name to a Specialist!

    The right Specialist-Doctor and a Diagnose are the two primary things we need.

    If you can get it in your country buy "Sticky Blood Explained" by Kay Thackray. She has got HS/APS herself and writes about the different symptoms. Not quite new with the latest drugs in it but the symptoms are the same as for a couple of years ago. Also good to read for relatives to understand our illness and how it is to live with it. Our members here have liked the book very much.

    Best of Luck to you and your daughter!

    Kerstin in Stockholm/Sweden

  • Thanks kerstin I will look into this book.

    Much appreciated for your response

    Xx

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