Sticky Blood-Hughes Syndrome Support


Well just gets so confusing, I and family history of APS with strokes etc and after my op in March I mentioned to the local Haem team that I was worried being not on aspirin, as I had been on this for a number of years, they were going to get back to me, but they didn't until too late when suffered from TIA and then put on Clop and 3 weeks later Warfarin/ I have been referred to St Thoms and 2nd visit in January, my daughter diagnosed in 2000 and she has been on Aspirin as our Paediatrician had time and patience to go through her notes and found a letter saying she should be on Aspirin. However her rheum sent us a letter today saying that the Haem who I see said not to bother with Aspirin, but in light of them not taking me serious months ago, reluctant for her to come off it as she suffers from headaches etc also the doctor in London said she should come up in New Year and asked if she was on Aspirin.; We are seeing Rheum tomorrow and we are going to say not happy with Haem. I just do not want my daughter to go through what I am going through especially as she is doing A levels and stress.

3 Replies

Hello, there, sorry things are so difficult, my daughter - 14 is also on asprin, on full tummy, 75 mg after evening meal. Our children have had very serious headaches and ailments which do not clear up, in contrast to their friends. We all feel uneasy, and to find that balance of communication between medical teams and not bothering due to being labelled as over fussy mum, is very difficult, however I find myself now with seronegative hughes, backed up by London Bridge, but not 100 percent by St T's, this I had to find out for myself, despite my clinical episodes of deep vein thrombosis in both legs, during pregnancy, also my awful health going back to childhood. I suspect I have had some sort of hypothyroid thing going on for about 25 years, the same with lupus and also psoriatic arthropathy, nothing tied together, and no real help. You just have to watch and wait, and at least trust you own instincts, nobody wishes their child to take an unnecessary drug.

My daughter has a nasty headache every day, which has improved on asprin, prior to going on this, it was very out of control. She also had dizziness and problems with her vision, *(albeit temporary), it came with the dizziness. It is very difficult getting the balance right. My youngest son had a migraine which caused extreme dizziness, cyclical vomiting dead legs, phonophobia and extreme pain, this lasted 15 months and 4 days... unfortunately due to the local education service thinking we were making this up... it altered the perception of our paediatrician, we had to go to London to independent places to get help, as the headache was played down, due to lack of attention, he was off school for nearly a year. ok now, he is not on asprin, as it died down... however if it comes back, I will seek credible advice.

Our family has lost all confidence in doctors, as my partner fully intends to write a paper on institutional bullying at a later stage.

I do not have one condition that was diagnosed early on, all my own research! and even ones I suspected years ago, told I did not have only to find them now!


Thank you so much for replying, it really gets to one, my husband today says he cannot stand hospitals because we had this appt in maxillr for our daughter and we never got to see the consultant for an hour and then tomorrow it is Rheum and then I have been up to Haem Ward for my INR and the doctor in Haem never even mentioned about my arm which he saw on Friday which has this huge Hematoma because of falling down stairs and he promised that he would phone me that afternoon, but as usual no call, I had to phone the unit for my INR result and spoke to registrar who did not know what I was talking about. and when I went today, he just said hello and under my breath I said something. Honestly I have no faith hence why I want to get my daughter's medication right. touch Wood and all that, she seems under control but has these headaches but she has the reassurance that she is taking something to prevent clots. Like you I am trying to find more about my tummy pains and its only reading sites like this and the hughes syndrome book that throws light on it. No wonder my mother never mentioned anything to anyone when she was suffering, cause she use to say that they did not believe her.

Anyway thanks for replying and I shall convey my concerns at the appt of my daughters here in the west country.


Hi daisy,

All i can say is mary took the words right out of my mouth!!! but please let us know what happens at you appointmnet



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