Do you know or are you a parent who has APS and do your children have aps?

[paddyandlin]

[Gadgets]

My eldest daughter (23) suffers from migrain (as i did at her age) she has been tested for APS and is negative at this time.

[kateb81]

I am a mother with APS but my daughter is only 19 months old. There is no one else in my family with APS so it was a total suprise when I was diagnosed. From what I understand people can test negative from time to time, infact my 1st blood test during my 3rd pregnancy showed my antibodies reducing. I know when my daughter gets older I will stress about her having APS but I will just become a nagging mother to the Dr's. Don't think i've helped or answered really though have I?

Hugs Kate xx

[daisyd]

Hi I have Hughes syndrome. My son who is now 30 wanted to be tested, he saw his gp who then refered him to the haematologist, where the haematologist tried to persuade him not to have it done as their would be no treatment for it, unless he had a problem with blood clotting. Not even Asprin.

He went for the results and Thank God they were negative. I don't know how we would have felt if it had been positive I don't even want to think about that.

He has factor 5 Leidons I think a lot of people do and was advised to keep hydrated and take exercise regularly.

When he went back a different haematologist said she wouldn't have even tested him for it as it could make a difference with insurance.

I can't inderstand that he doesn't even need to take any Asprin before flying. "More trouble than its worth" ? maybe due to stomach ulcers. I don't know. Personally I will still persuade him to take one before flying after he has eaten.

In his case I think it may help when getting insured as I think family history is included and as I had a heart attack at 51 due to a blood clot he will now be able to tell them that he hasn't got the syndrome that caused it.

Its very difficult decision to make whether to be tested or not, but I wish I had, it may have saved a lot of problems although it would probably felt like a ticking time bomb.

Good luck

Love Karen

[paddyandlin]

Thanks for sharingh Karen, i can understand the thought of it being like a ticking time bomb could send you insane. I think it deepends on GP as to wheather you get tessted and as i was told if you have a negative testy it does not nessacerily mean you do not have the illness just it is not showing at that point. My daughter is showing signs she diagnosed with Raynards and suffers with mouth ulcers etc and we are going through the process of referal but GP being a pain wants to do a whole load of bloods before he considers referal.

family History is taken into account as is symptoms then the blood test it is all rather confusing as each doc has there own way of doing things really annoying!!!

paddy

[Jade]

I am a parent with sero negative APS diagnosed by Prof Hughes himself in 2004. I have had warfarin ever since and in terms of headaches warfarin was a miracle, I monitor my own INR and dosing and if it falls too low all headaches, pain, fatigue etc return. My son who is 22 shows many of the signs I did and really wants to be tested, insurance is not on his mind. Getting better is all he wants. The GP will do a test, though it will not be as comprehensive as St Thomas's, however we know a negative result will leave him with no teatment and he will really need to pay and see Prof Hughes.

[daisy11]

I am a parent with APS and my daughter who is 16 also suffers from it too. It is a family thing on the maternal side, unfortunately, my mother had this and died very young from internal bleeding due to warfarin. I feel so helpless, as quite truthfully I am scared for my daughter. Every time my daughter has an headache I think is it this and that - its a nightmare. She has been diagnosed with it since 2000 and takes Aspirin. Unfortunately for myself I have had a mini TIA and this was I think because before having an operation for splenectomy in March they told me not to take Aspirin, I had been taking this for years, and no problems, but then in April, whilst shopping with husband lost sight in one eye and was taken to eye infirmary where they said it was to do with APS. I was then told to take Clopiderel (sorry can't spell - a platelet drug) and later Warfarin. I feel that the staff at the local hospital are not as on the ball as St Thomas where I was diagnosed many years ago by Prof Cranston. Now I am asking lots of questions to my Haematologist and hopefully get something sorted out.

[paddyandlin]

Hi Daisy, I am sorry you have had a rough ride this seams to be the case on all those that have kids and want tested. I also agree on a local level it is awful at the moment not many local services really have a good idea if they do it is one person and even then they can come and go.

The blood thinners you metion i have been on and am on now (waferin) it is all hard word when you trying to protect your kids you should not have to fight this hard just to get a simple answer.

paddy