Worried Mum and new to site.

[JennyD]

My daughter had baby by c section 8 weeks early and with IUGR and low amniotic fluid. (She had a previous ectopic pregnancy about 12 years ago) 4 days later she suffered a splenetic infarct, had an infection and tested positive to lupus anticoagulant. Dr said she had sticky blood. She was in hospital about 10 days, came home and 3 days later had PE in both her lungs. Was given heparin and warfarin which they said needed to be continued for 6 months. She then had symptoms of a stroke but they could find nothing on MRI and say it was an atypical migraine ( she does suffer from several different types of migraine). She has just had another lupus anticoagulant test which has come back weakly positive? They have asked for another test in 3 months. I think she has APS. I would be interested in what others think and should we insist on an appointment with a hematologist or wait for third result? Thanks

[Suzypawz]

Hi I can hear your concern & I can understand why

I'm glad you have contacted us, she really needs to have a proper diagnosis as she has already been told she has 'sticky blood', been put on warfarin for a period of 6mths........but it needs to be confirmed by a specialist who knows of APS / Hughes because if she has APS she needs to be at the correct inr level to avoid having another PE or a clot / stroke!

I have realised by experiences on here that TIA's dont always show on MRI's ?...

She needs to push to be seen by someone that can give her the correct tests, confirm what she may have / not have & then be given the correct treatment / medication.

I hope she & you get the help she deserves soon, pleases let us know how you get on, all the best, Sue x

[JennyD in reply to Suzypawz]

Thank you Sue for such a quick response. Could you tell me what type of specialist you need to see. So far we have seen GI for spleen (radiologists arguing about whether its blood clots or trauma although specialist said blood clots), respiratory for lungs and neurologist for brain. Individually none of them seem worried!!! Can APS be triggered by pregnancy, ie maybe it was borderline before and pregnancy made it worse? I have so many questions and her GP doesn't seem worried either, he just thinks it's a one off situation and will resolve itself. I will push for whatever is needed, everything I read leads me to believe it is APS but then I am not a Dr!!!

[Suzypawz in reply to JennyD]

You're welcome............I am not a GP either, all I can do is give you advice to the best of my knowledge.

I would think you would need to see a hematologist to get answers, I was first seen by a rheumatoligit 11 years ago....but I didn't feel I had a lot of answers replied by him as he didn't know about Hughes / APS enough!.......my own GP put me in for the correct blood tests ............has she got a good GP that could refer her quickly to a specialist?

In the mean time if the correct blood tests are done by her GP ( aCL & LA ) then you will have it confirmed wether it is Hughes / APS?

If this is the case & is confirmed it would be even better if she got seen by the REAL specialists which are in London at St. Thomas' hospital as they specialize in that field. Her GP may be able to get her a referal to there in the future?

Hope this helps, Sue x

[Suzypawz in reply to Suzypawz]

Oh ....also I hav'nt heard it is triggered by a pregnancy as of yet? but I have heard it can be triggered by a virus / illness, operation or even a trauma in ones life......these are what we have been made aware of.....some believe it has been passed down through their families?

Mine we believe was triggered by me being sterilized / as I didn't g through it very well? & I had lost my father around the same time too?..............

[JennyD in reply to Suzypawz]

Thank you Sue, I need to follow up what you have said about the blood tests, she has had LA but not aCL one to my knowledge. Obviously a waiting game and judging from all the posts on here can take an awful long time. How appalling when something can be so serious. I will keep you updated on what happens?? Seems it might be a long wait though

[Suzypawz in reply to JennyD]

You need both tests done for a diagnosis....so push if you can for her to have them, I have learnt by my experience not to agree to everything docs say & keep pushing until you get the answers you are after.

Yes it isn't on....before I was diagnosed with it I was told it was 'modern living & I was depressed!' if I hadn't have pushed to be tested........ I dont want to think where I might be today

I struggle but I feel I'm still lucky?.....do you know what I mean?

I hope your daughter is ok, all the best to you both, keep us updated....don't stop pushing until you get the answers you are looking for x

[JennyD in reply to Suzypawz]

Oh gosh, I feel so sad that so many people suffer quite catastrophic problems without anyone making an effort to listen to what is being said. I am sure people know their own bodies the best!!!! I confess to never having heard of this illness before and it was a suggestion by someone I know who suffers with it that we looked into it!!

I, like you, dread to think of what would of happened to her and her baby if this has happened whilst she had still been pregnant. A very vigilant sister at the hospital saved her and her baby that day, I am sure of it.

Thank you so much for your support and understanding and I will do what I can to help people to recognize this illness.

[Renae in reply to JennyD]

Jenny, Yes aps can be triggered by pregnancy. Of course Aps is not caused by pregnancy. Mine was triggered by pregnancy in 1995 when I had a heart attack while pregnant. That is when they found out I had it.

[JennyD in reply to Renae]

Oh my goodness, I hope you recovered fully from that. Was your baby ok? I do hope so. Did you have any symptoms before or during the pregnancy that they said were normal?

[Renae in reply to JennyD]

Jenny, Yes Savannah was fine!!! She is a healthy junior in high

School. I didn't have any symptoms before or after my heart attack. I have also been diagnosed with lupus sle, protein s&c deficiencies, lupus anticouagulant, anticardiolipin antibodies, and fibromyalgia. I personally can not tell if my inr is to high or low. The way aps is treated and diagnosed is different in the states than it is in other countries. Good luck

[JennyD]

Thank you Lynn.......sadly we can't afford private but think I will have to take the info from this site to her GP......I will definitely let you know how we get on. I am glad to have found this site and thank you for your support.

[MaryF Administrator in reply to JennyD]

I worked really hard on my nice GP to refer me to St Thomas's, I also downloaded and printed out a number of relevant medical papers from The Hughes Syndrome Foundation site: Professor Khamashata is a good idea, but of course there are others also at St Thomas'. Hopefully in the future it will not just be St Thomas' who have the expertise on this, but currently it is. I wish you the best of luck with this, and to me it sounds like you are asking all the right questions and motoring on towards better care for her. Welcome to the site. Mary F x

[JennyD]

I think that should be a catch phrase for all doctors!!!! I think what has surprised me the most is that this has all been very sudden and serious. My daughter has suffered with vague symptoms for well over 15 years but only now are we putting two and two together although she has never had clots before. I will return with news of how we get on.

[MaryF Administrator in reply to JennyD]

The history of migraines is very relevant. I am somebody who is seronegative also, despite multiple clots with my first pregnancy 23 years ago, and at age 47, have only just passed an SLE Lupus test, despite really obvious symptoms since teenage years, alongside 3 other things. With these diseases, either us or our relatives, (in your supporting case), have to be our own detectives. Mary F x

[jessielou]

Hi Jenny

Welcome and glad you found us, sorry to hear of the awful health problems your daughter having, thank goodness for the vigilant sister!!

I have LA positive Hughes Syndrome, problem pregnancies, miscarriages, PE's, possible TIA's etc. I ended up being referred to St Thomas's hospital by local haematologist, who openly admitted she didn't really know much about hughes/Aps. Sounds like your daughter needs further tests and possibly better control of anticoagulation. Push with your daughters gp for referral to st T's..

I hope you get some answers soon.

Hope your daughter and baby doing ok.

Take care gentle hugs love Sheena xxxx

[siveinvan]

I'm with the rest here. St. Thomas with Prof Khamashta or London Bridge with Dr. Hughes. At least you are in the same country....!

[TJSTICKYBLOOD]

In my case pregnancy seem to trigger my hughes or at least that's when the bad things started happening.

[emmaj]

Hi, I was diagnosed with anticardiolipin antibodies and only treated in pregnancy and was told that some APS is triggered by pregnancy and as long as your treated with blood thinners through a pregnancy and for 6 weeks after then all should be ok, some are lucky enough never to have any problems again and never go on to have any symptoms outside of pregnancies. I myself had IUGTtwice and loss of amniotic fluid once, I was only diagnosed with APS after a stroke in between pregnancies. Maybe she will be a lucky one and the antibodies will dissapear after 6 wks and that will be the end of it xxx

[JennyD in reply to emmaj]

As of yet, she hasn't been tested for the anticardiolipin antibodies only the lupus anticoagulants, twice and both positive. I worry about if she wants another baby (not just yet!!) and she hasn't got a diagnosis and we go through this again. I feel very afraid for her and reading all the stories on here, for the sake of a blood test, seems crazy. I am going to badger everyone who will listen so at least we know one way or another. It is good to know that others have similar experiences to us but very sad in another way because of the huge impact it has. Thank you for sharing your experience. xx

[APSmum in reply to JennyD]

Hi Jenny, My APS seemed to be triggered by my pregnancy also. Like your daughter it took awhile before I got a proper diagnosis and they put me on warfarin (although that diagnosis was only after a number of TIAs/stroke although mine did show on the MRI). I am now getting advice from the doctors on a possible second pregnancy. They haven't said its out of the question but would be high risk and would need to be managed closely. Keep trying for that acL test and diagnosis and hope you get there soon! Take care

[JennyD]

Thank you to everyone for sharing your knowledge and experiences. It is so nice to know that there are such kind people around. I will continue to question the professionals until we get an answer, one way or the other xx

[jessielou]

Hi Jenny

Exactly what you need to do, keep pushing with the docs until they look deeper, with the right treatment life can get easier for us Hughies. With regards to future pregnancies, standard treatment is aspirin and heparin through pregnancy, this makes a dramatic difference and is safer for mum.

Take a look at Hughes foundation website at hughes-syndrome.org for loads of information on Hughes it's treatments, tests etc. maybe print info off for your daughters docs.

I hope you're all doing ok hon! Must be so worrying for you!

Take care gentle hugs love Sheena xxxxx