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Sticky Blood-Hughes Syndrome Support
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Well my daughter has Lupus, ITP and APS but just before xmas 11 she had a negative test, despite the blotchiness of skin, headaches etc and then last Monday she complained of not feeling too well, but still went to college and then Wednesday she came home to say that she was so hot etc. We rang the oncall ddoc who said to give her paracetomol which we did, but still on Thursday still no better, so she went to the GP in place of me ( I had made an appt weeks ago with the GP so I asked them if my daughter could come instead) My husband took her and he rang me to say that the GP had said straightaway A & E without looking at her, so poor husband spent 4 hours whilst my daughter on a trolley with nowhere to sit just standing and eventually she was put on a ward. They tried unsucessfully to do 2 lumbar punctures and was told that she would get a ct scan the next day before lunch, well - change of plan - cannot do lumbar and still not had ct scan. She is on a number of antibiotics and they are just waiting!!!! They think it is a mild form of Menigitis and because of her low immune system. I have been unable to attend as I am on such high dose of MMF and no spleen and they said I was at high risk.

My daughter had said her friend had been off school for 4 days due to stiff neck.

The times I tell my daughter to wrap up etc, I know she can still get meng without the bother of wrapping up in the cold but as a teenager, she does not listen to us and think we are going on and on. Hopefully she will now understand, the importance of warmth etc etc.

She came home briefly just for half an hour to wash her hair and she has gone back to have her antibiotics, she may be in for two weeks!!!!!

I have had to stay clear of her.

How I thought this year was not going to be Hospital year.

Excuse spellings etc.

10 Replies

Goodness me, I hope she feels better soon,and your worries can calm down a bit, the invincibility of youth etc etc MF x



Kids especially teenagers can be a nightmare i hope like mary said you get things sorted .

have you tried getting her to speak to other people who are teenagers with this condition may help.



Hoping that your daughter gets better soon and has the right tests to diagnose and not have it be a guess. I know you must be worried sick but it sounds like she is in the right place.

Please keep us updated on her progress!


Thank you - honestly husband just got home for him to bring her usual medication - thinking that the hospital had prescribed all of her usual medication well I asked him and he said that she is only taking antibiotics which the hospital has given!!! I said why didnt you tell them you have the drugs and he said he had forgot - I am feeling strange now - so I have told him to take the tablets which she has not taken since last Thursday - anyway just contacted daughter and said she is to ask the doctor questions and tell them she has not taken the tabs since Thursday.

What a start to the day!!!


Oh dear!!!

I hope you get answers soon



Hi hon

I hope your daughter gets better soon, such a worry when they not listen isn`t it, but thats teenagers, was just as mule-headed myself.

Take care gentle hugs love sheena xxxxxx :-) :-) :-)


Thank you - well she is home now and back to herself - straight onto Facebook etc and just being a little pain!!! They have not decided what she was suffering from, but she has to have an infusion every day this week, and cannot go back to school until next week. She has to see consultant on Tuesday and hopefully tests will be back

Just hope that today she buckles down, I know she has not been well, but Facebook drives me up the wall!!!


Glad you've got her back home. I'm so with you on the Facebook thing. My eldest got en gaged just before Christmas, I knew cos he got ready here and took her out for a meal to propose (I knew about the ring etc) but they neglected to tell her parents before posting the new "status" on Facebook. Let's just say, not the best way to start off with In-laws,lol!

But seriously, I do hope all is soon germ free in your house and 2012 gets off to a healthy start

Love Sharon x


Well it looks things are looking normal - in between going to the hospital for antiobiotic transfusion, sneakily goes on FB, but then her teachers have emailed her and said to stay on top of her work - I am sure she thought that they would say take it easy!!! I know she is unwell, but her mind could be put to great use just reading one of her A level books. When she was younger the doc did refer her to a counsellor, but come the day, she refused and then we arranged again and she refused to talk about her condition. I just give up, and then I get worked up and I hurt all over. I have just told her that the computer comes off at 10.00 and she started shouting saying how shes been in hospital etc etc and we said she cannot go on the computer at 10.00. The consultant said that being as she suffers from APS and lupus then she is more prone to bacterial infections.

She has had to stop the Hydroxychloroquine and Metharexate until next week.

Anyway hopefully her infection will go once and for all and she can get back to 'normal'


daisy how about using facebook to your advantage see if she will join or talk to some of the APS groups on there that way its using a media that is coming on to her level , If you want help let me know .



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