Can our children be tested for Hughes Syndrome

I have sero negative hughes which was diagnosed by Dr K a few years back. My 20 month daughter had a awful rash (which looked like hives) last week which turned to bruising. They did blood tests at my local hosp and said they were ok but could not explain the bruising. I'm not a medical person at all but bruising to me means bleeding. They really could not understand why I got upset and said it was a virus and that she was perfectly fine (I'm sure they have me down as an overanxious mother) but it took me many years and a lot of heartbreak to get my diagnosis which is barely recognised anywhere outside of the specialist units (even using all 3 names aps, hughes and sticky blood had some of the dr's saying they didn't know what I was talking about). I'm now wondering if she could have a seronegative hughes or similar.

Anyone had similar or know where I can get a second opinion from I have photos of the rash and bruising.

11 Replies

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  • Having been cast in the role of 'over anxious mother' myself, an unfortunate and frequent label for parents, who at times simply notice unusual symptoms which do not add up, and are rightly concerned, I can suggest that you carefully record anything unusual, and perhaps see your GP with any letters of diagnosis for yourself from Dr K, to gently and firmly remind them, of diseases such a this one running in families. Did you daughter receive a diagnosis for this rash? Did they mention any type of 'henoch-schonlein purpura? Perhaps a second opinion elsewhere, out of hours, or a walk in clinic etc etc, a fresh set of eyes. Also really good that you have done photographs for future reference, this may be useful.

    It does appear to my own family and others that getting a second and informed opinion for children of parents associated with Hughes, (I am seronegative) like yourself is almost impossible. My daughter had HSP, when 5, this showed up a strange and temporary platelet reading, now two of my children have other quite clear signs. We as a family are trying very hard to get assessment for the children in London.. Unfortunately at times, medical practitioners can dig their heels in especially if not following a modern and up to date approach to cutting edge learning/research..

  • Hi huds,

    had this discussion with gp the other day, she is willing to test my children. Cos at 11, 13 and 27 they showing some symptoms. She wants rheumy at st thomas's to write list of what test to do. I know i'm lucky to have a pro-active gp.

    Hopefully some day others will catch up.

    Take care gentle hugs jessielou x sheena x x x:-) :-) :-)

  • One further point, which I have been given re my own health and family.... is that if I test seronegative... then my children probably will. My own sisters do as well. However between us all we have a clinical diagnosis, due to obvious clues/incidents.. Being seronegative can be problematic in terms of diagnosis, if a particular doctor is not aware of this perhaps being the case.

  • Thanks for the replies, it's nice to know I'm not alone. I'm glad I found this blog. Being Sero-negative is so frustrating as people just don't know about it. Mary I believe my identical twin sister has sero-negative too as her clinical symptoms are very similar to mine. A dr said 32 years ago that we should be tested for something when our Dad died suddenly from a heart attack (he was 32). Not sure what we were meant to be tested for as our GP said it wasn't necessary we were 6 at the time.

    Alas my twin saw a different dr at st t's who said they didn't believe there was such thing as sero-negative so she is without diagnosis or annual review :-(

    Will post a bit more about my diagnosis as an intro when I get a chance.

    Rosemary

  • Hang on in there, and I presume you have seen the July Blog from Professor Hughes under Kate H's user profile, in which he specifically mentions those with seronegative status. Keep your chin up and just keep collating information as best you can. Mx Anything printed out like this for medical staff can help.

    My own father had endless heart attacks and other symptoms, as did my grandfather and possibly further back, the family picture is quite clear for us.

  • Hi Rosemary,

    I think everyone has said in the first part what i was going to say about collating information and do not give up keep at some point you will find a Doctor that will understand and care they are out there!

    I like Mary am trying to get my children tested but i am having many issues with my GP who will not refer my daughter (6) as he has done basic blood tests which have all come up clear except for her being diagnosed for Raynaurds, which still has not made the GP listen. even with my family history of clots!

    I think when you have issues when people do not listen or understand it can be really had to get people take you seriously and not be seen to be a over protective parent, I am waiting till i go up to ST Thomas next and am going to talk to the Doc there and tell her the issue and see if she can help with a referal or test. Maybe it might be worth try to by pass the GP speak to your consultants or alternativly maybe move GP's.

    may be us parents could stick together and ensure throught thios forum we supoort each other in making sure we pass info and ways of ensuring our kids are not slipped through the cracks!!

    Hope this ramble makes sense if not i can iunderstand what your going through happy to share info.

    paddy

  • I have finally-after many years been diagnosed with raynauds as it is one of the many symptoms of aps

  • A great idea Paddy, I am currently working hard on one avenue, and should it come to anything will publish it on here. M

  • |SDOubt this will be much help to you but my son's paediatrician said it couldn't be inherited as it was an acquired condition (Not at all sure about this; does anyone know?) pretty sure I've always had irt, certainly since at least 13yrs old. I will ask again when we go back in November as am learning how litle people reallty know about it. BUt it's a good hosp an I know they will try to help

  • Hi Eliza I was told it was not herditary back in 2003 when we were looking to have children but in the last few months on a HSF article and when i asked anther Doc about it was told it can be herditary so it wil be intresting to see what happens now.

    Mary I look forward to reciving any info you have and if you want of need help with it let me know.

    paddy

  • Hi all,

    Just wondering, why if it`s not hereditary, all the specialists I`ve seen ask if their is a history of autoimmune disorders in the family.

    My reply is yes!!!

    Confusing!!!

    Take care, gentle hugs, Love Jessielou xxxx :-) :-) :-) xxx

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