attention seekers

[Scouseem]

Right I might be just hormonal as I'm 28weeks with DC3 but omg I need to vent.

My friend is pregnant and Im fed up with the drama already. She said she weren't telling anyone then threw a whole hissy fit because people found out because she told so many people then she told me she's 5weeks but went for scan today and now she's telling people it says the baby stopped growing at 5weeks but she should be 7weeks. Is it just me or is all this a bit weird? Why would you lie about something like that? An now she's had to take time of work to rest.

Isn't the joy of being pregnant exciting enough without having to make extra drama.

Noddy, that sounds like a positive to me! The problem with the APS testing is it's dynamic, IE it's like taking a photograph.

Thinking about a picture I took of my daughter a couple of weeks ago, she got up in the night for the toilet, she never opened her eyes and had her hair over her face. It was so funny I couldn't not take it! (mean Mummy) That picture only proves that she looks like that at that time on that day. The picture I took of her on Saturday showed her dressed up with her hair looking like a medieval princess.

It's like that with any of the APS tests. The figure will go up and down during the day, during your cycle (if you're a woman), depending on what you've eaten, how much stress you've been under... Pretty much whatever is going on in your life will affect it. This means the test is only useful as part of a complete picture. If you've proven to be thrombophiliac, have had miscarriages and whatever other symptoms you may have on top of the fact your numbers have shown positive then it's a pretty good indicator that you are positive.

I'm no expert on the condition, I try to understand what I can and what I need to, but have a look for a Yahoo group called APLSUK it's a brilliant resource for people with APS and they can answer any questions on there.

I'm on Aspirin permanently but because I've previously lost a baby at 20 weeks Aspirin alone isn't enough. I was done with having babies, this was totally unexpected, so I had no pre-pregnancy clinic and no plan in place for what to do when I got pregnant. I don't have a cycle as I'm breastfeeding so didn't notice how far I had gone.

My GP can't prescribe Clexane unless told to so I needed to get into the hospital. Unfortunately the hospital is booked up and weren't accepting anymore patients so it had to go to the Directors for a decision, eventually I got the news they had accepted me so then I had to get hold of pre-pregnancy and arrange to get in for a prescription.

The reason I won't go to term is I can't. I've delivered at 20 weeks, 31 weeks and 35 weeks, the 35 weeker started at 23 weeks. I only got as far as 35 weeks because the baby was IUGR. It's not directly Hughes, it's indirect because it's an affect of having a 20 weeker, once you've started delivering at silly times you have little chance of going to term so I'm now proven as a premature mum. As you've only done it once and it was twins you've got a better chance than me of getting further - think of it as the body sort of weighing the babies to judge how far along you are.

Thanks for explaining.

I had my twins at 23+5 as my membranes had gone (possibly due to a blood clot in the placenta, but no-one sent my placenta to be checked!) at 14+5 and I then got choriamnionitis. I also had bi-lateral pulomonary emboli whilst I was pregnant and had had an earlier miscarriage prior to that, so all of that was why they tested me for APS. Luckily! I had another early miscarriage whilst I was waiting for a diagnosis, but had been on heparin then but no asprin as I was still less than 6 months since the PE's.

I have three surviving children, born at 40, 38 and 37 weeks, but I clearly didn't have APS then. Hopefully with the medication all will be fine. It's still hard not to worry though.

Sorry, can I also just ask, can you still breastfeed whilst taking asprin? (we want to TTC again ASAP after this baby if all goes OK, but I also want to breastfeed for as long as possible)

You were born with APS - someone has to have the 20% of babies! Sounds like you've been hit hard by the thrombophilia side of it.

The fact you've had three other pregnancies means your body does know what it's doing and hasn't been trained into thinking that babies are supposed to be born when they're still small so you should go to term this time.

I know what you mean about worrying. I started getting BH on Sunday and now stressing each time whether this is the start of things. I'm under instructions to get checked out if BH becomes too regular which is how we found out I'd started at 23 weeks before, that's next week! I think when you've been through so much in pregnancy and had that innocence that you can read in this thread, the whole "12 weeks" thing taken from you it's hard to see your pregnancy as anything but fragile.

Yes! Anything that's safe in pregnancy is safe in breastfeeding. Aspirin/ Clexane is a common prescription after section so it is given regularly to breastfeeding mums.

I've been breastfeeding for 4.5 years without a break and been on Aspirin for 6 months longer than that.

I'm a bit by this thread. I hate attention seekers - you know, the ones who have the pg that's longer/better/worse than anyone else's, the labour that's longer/more dangerous/the most horrific the dr had ever seen...

But this all seems a little strange. Maybe your friend is just not as reserved as you are - some people deal with crap by talking about it. LOTS.

The dates issue is easy to understand. Someone else has explained why she might be confused about the 5/7 week issue and whilst you say she's deliberately misleading people, she may not. Have you never noticed the amount of threads where normal, sane, intelligent, non attention seeking women ask for help with their dates as they don't 'get' the LMP/conception issue.

There may well be other evidence you've not gone into but based on what you say, cut her some slack and give her some sympathy and empathy.

I don't go on and on about stuff with friends but in my last pg, when I was finding life really tough when I answered 'I'm fine' to a 'friend' she asked how was I really. I told her. She then went on to say 'I wish I'd never asked now'. Nil sympathy and even less empathy. I was devastated and make a point of not saying anything now as I can't bear that dismissive rejection again.

Actually I have known alot of women who get confused by the added two weeks. I think she thought she was 5 weeks from ovulation but MW has now told her they measure you from two weeks before ovulation and she is actually 7 weeks. She had her scan and instead of showing at 5 weeks post ov and 7 weeks LMP she is showing at 3weeks post ov and 5 weeks since LMP which would say a misscarraige is possible, many first time mums find pg dating confusing.

Secondly pain I went to my GP to complain of mild abdominal pain (I told no one other than my mum and DP) I was admitted for ectopic and as my bloods were not increasing and no sac was seen I had to stay in for 2 weeks until they knew he wasnt ectopic. I think you are being very cold and nasty to your friend.

Oh OP, I think you're using here as a safe place to vent so you don't upset anyone in RL - and I have no problem with you doing that - you're not being a "bad friend". And yes, you probably are a bit hormonal

OP, don't take any notice. I use MN to vent and I get jumped on for stuff too. I try not to post about 'petty' things (petty to others, things that bother me but I seem to get jumped on, so I don't bother so much now).

I know what you mean about liars and drama queens. My cousin is such a liar I now refuse to believe a single thing that comes out of her mouth. Unfortunately she has lied so much, if she was telling the truth about something serious that was happening to her, I simply wouldn't believe her anymore and I don't think anyone else would either.

Vent away!

I think people often get the wrong end of the stick online, its always difficult to write exactly what you mean.

Confuddled, I am supposed to be going back in 6 months just to 'check' once more (which haemo said was up to me) but she seemed quite uninterested because of the last result. She was a bit surprised at me having supoerficial clots though as well because I dont have varicous veins.
I am now about 8 weeks and obviously not on any meds, I went to have a scan last week because of leg pain again and have to go back again next week as D dimer was high and they seem to think it could well be a clot even though the scan didnt come up with one last week she said it could possibly just be starting to form. So I dont know where I go from here. No one seems to really be following me or know whats going on. I had a period of extreme tiredness some months before I got pregnant too where I could hardly do anything.
I have had one miscarriage but that was due to malaria I had at the time when I was in Africa.

I wonder if I can still be tested though if I am pregnant?

They can test in pregnancy, some women will only test positive in pregnancy and will need treatment. TBH I think (in my totally none professional opinion) that you should be on Clexane in pregnancy. You've already proven to be thrombophiliac and you're at higher risk now.

I highly recommend getting the APLSUK group (there's a sister group too for pregnancy, I can't remember the name but the link is in the welcome email) they'll tell you what to ask and who's the best doctors for your area (there are members all over the world so you can pretty much guarantee someone will know who you need to ask for). I think you need to see a rheumatologist because this is probably going to be more their field. Problem is that we get seen by rheumatologists, haematologists and immunologists depending where we live which means it doesn't really fall properly into a particular field and getting a good doctor is not easy. You need to get into a Lupus clinic (it's not Lupus, it's worse than Lupus but tends to get lumped in) so if you can ask your GP to find out who runs your local Lupus clinic you may have a better time.

I missed a point you made earlier that doctors don't understand it. That's so true and something everyone is finding. It was discovered in 1985 by a junior doctor on his rotations. He was asked to sort paperwork in the Lupus clinic at St Thomas and he spotted a trend in 1 in 8 patients. He discovered the condition, you'll probably not be surprised to know it was Dr Hughes(!) and has gone on to specialise in Hughes Syndrome. Prof Hughes is still working and is apparently a lovely doctor.

The problem at the moment is people are being trained by people who already working when Hughes was discovered so we have several generations of doctors who really don't get it. On top of that doctors get a bit funny about a junior doctor discovering a common condition and getting his name added to it. There was a memo about 5 years ago telling doctors not to use the "Antiphospholipid Syndrome" name and to use it's common name "Hughes Syndrome". Apparently this is because they're trying to reinforce the idea that Prof Hughes is the expert and to defer to him on the condition as doctors don't like doing it and will actually ignore his research. We were also asked in APLSUK to use Hughes Syndrome when talking to doctors to reinforce it.

no1 without the miscarried twin your friend could be me.

After 5 mc's, 1 eptopic, 1 living child, another miscarriage & 2 more living children (all girls) I was informed that I was unable to carry the male hormone & all previous mc's were boy's.

I was also sterialized post 3rd section as my body wasn't capable of going through another mc/delivery.

I was probably labelled an attention seeker with DD1 & DD2 as I was terrified that every twinge would be our goodbye.

With DD2 we were told during a very heavy bleed that we had lost her, it was only when a mobile scan was used to check for an eptopic that they realized she was still alive.

Until you know someones complete gynae history you really shouldn't judge them on their drama queen status, I was a drama queen but did not love the drama.

OP i feel ur pain your friend sounds a bit like my friend it's all about attention- we're both pregnant and her's is IVF which is great and i was so happy for her but she told the world when she was a few wks preg, she had been pregnant a few times before and miscarried everytime so why tell until your totally sure, then told everyone when it was twins, she only knew that as she got an early scan due to heavy cramping, she lost one before 7 wks (seen in an early scan again) which could go undetected altogether as by 12 wks theres no evidence of the other feotus, she was then telling people she lost her baby like she lost a pound down the back of the sofa!!

i know it sounds cruel but until u know someone like this you don't know wat its like to have someone lying or telling things they shouldnt just to get attention and having people worrying! it also doesnt help that im hormonal.

Scouse, sorry for hijacking your thread although I don't think you are coming back on this one!!

That really interesting confuddled. I am really pleased I met someone in the UK with the condition. I had been to a forum online but they were mostly in America. They had also thought that I should be on heparin during pregnancy but I thought maybe that was what they did in the USA. I think Dr hughes is at St Thomas hospital no?
My father is actually a former Doctor (he is quite old though now and retired) but he didn't really know anything about it until he looked it up. Also my previous Dr didn't (who was younger) She thought Lupus anticoagulant was the same as having lupus.

I will have a look at the APLSUK group - thanks.
I had sort of closed the issue I think but I had always wondered why I tested positive in the first place and if it meant anything. (I didnt have any infections or anything)

I think you usually get some kind of idea what the person is like anyway hilltop don't you? I have someone in my family who is such a drama queen and even if someone else is ill, it's her that is suffering because of it!! If the person was not usually like this you might paint a very different picture. I usually know when someone is being a drama queen or when they are genuinely upset about something.
Having said that everyone experiences a diferrent level of suffering. For one person a potential M/C at 5 weeks could be absolutely devastating, for another woman it could be just a way of life and they wouldnt think twice about it.

There are plenty of us around, MumsNet's miscarriage campaign included that women who miscarrry should be tested for Hughes Sydrome. I'd extend that to all pregnant women should be tested, I know Prof Hughes agrees with that as he said it on the news once, I was jumping up and down saying "I keep saying that!" It was bit of a squee moment (sad I know lol)

Yes, he's still working at St Thomas' in the same clinic he discovered it in.

Lupus Anticoagulant is a misleading name, I tend to just say LAC to avoid saying the "L" word. Anticardiolipin Antibody is also a misleading name, it sounds like something that will attack your heart but they used to test for it on a cow heart. So much simipler when you're IgM positive (like me!)

The test is part of a picture so the results are meaningless on their own. A positive doesn't mean anything without a full picture, neither does a negative. You paint a picture of someone they should be taking seriously as a positive.

I have APLS (Hughes syndrome) - in my case it is the anti cardiolipin antibodies that are elevated. I've had 10 pregnancies & 6 mc between 5 & 17 weeks; I'm currently 23 weeks pg. I also had a clot in my second pregnancy, pre-eclampsia and thrombocytopaenia - luckily I had a PROM at 36 weeks & ended up delivering early because I hadn't had any treatment & my placenta was a mess.

I had all the standard testing after my 4th loss but wasn't diagnosed because the protocol at that time was two positive assays 6 weeks apart, I never had more than one. When I was tested in my next pregnancy my aCL antibodies were sky high, I also lost that pregnancy as it was too late to start aggressive treatment. Since diagnosis I've had two full term live births, a late loss & this current pregnancy - so my odds have improved with treatment but you are still at greater risk of losses than the non APLS population. It's the risk of still birth that terrifies me, should we (please, please, please) get that far baby will be delivered at 37 weeks this time.

Thankyou confuddled and phlebas - thats interesting too that they didnt diagnose you first time because of you only testing once. I just hope I don't have to go through what you both have. It must be such a worrying thing when your chances are so high of loss. Fingers crossed for you phlebas. I would like to stay in touch with you on mumsnet, not sure if they have a friend thing here but if they do I will add you the list.
You know when you lose the baby with APS is that because of blood clots in the placenta or somethign else?

I'll answer properly when I'm online. No one knows for sure why we lose babies. Maybe it's clots on the placenta, maybe the antibodies attack the placenta, maybe it's our sticky blood not getting through. All we do know is anticoagulation therapy works.

Still not had chance to get online I just wanted to say if you look at the Hughes Foundation website you can email Prof Hughes' team if you're wondering about your results or not sure what your doctors are saying.

It might be worth us starting a new thread for Hughes support so we can stop the hijack!

Yes Confuddled that's a good idea!!