An update regarding my daughter's appointment.....

[purple-lou]

I managed to convince my daughter to go to the hospital. It was very stressful for both of us. The staff were amazing and took on board that she is terrified of hospitals and needles because of past experiences.

They backed off when she was crying and shaking. I was surprised how good they were.

The consultant was shocked at the lack of care and treatment at previous hospitals.

We went through her history and the family history of Lupus and RA. After doing an examination, the consultant said she has Raynauds.

She also believes that she has Lupus. She has to go to see a Rhuematologist on Monday morning.

Now, she is refusing to go and has said that I can't force her to go in the car. It's true and now I'm stuck.

Her big brother has come over from Wales to try to support us. Tomorrow is going to be hard.I used to be able to take any amount of stress, but since I've has Lupus, I just don't seem to cope.

The consultant has said that she doesn't have to have bloods taken tomorrow. Just a consultation, but she told her that if it goes untreated, there could be a risk to her.

She is a bright girl and I think that she is scared of knowing that she has Lupus. I haven't had mine long and she is still coming to terms with my illness.Poor girl.

I'm dreading tomorrow.xxx

[Purpletop]

Not only you have your illness to worry about, now your daughter's too, you poor thing. It must be so difficult, we are all different, not everyone wants to know they are ill, particularly with lupus. We, as adults, at least choose when we want to find out by deciding when to go to the doctor but as a child, your daughter has to go along with whatever is decided for her. It must be so frightening for her, I so understand. I'm sorry, I have no bright ideas in this case, just wanted to say that I feel for both of you and I hope that once she gets tested at least she can get proper treatment and start feeling better.

[Danielle2419]

Convincing her to go the first time was major in itself now this time dealing with yourself and the possiblity of your daughter dealing with lupus is beyond belief and i feel for you in that way again making her go a second time is beyond my brain of ideas convincing myself i was struck with lupus was a challenge in itself as you said shes a bright girl and if she knows theres a risk to her health that will prompt a decision thats right surely again she doesnt need bloods taken but hopefully once shes tested they will be relief and treatment can be started so shes feels well again.

[mstr]

I hope that things go well tomorrow and that you also find the strength you need. Sometimes as parents it's harder because you know what having lupus is like and as parents we just want to protect. Perhaps after a nights sleep your daughter may change her mind. I hope things work out tomorrow for her and that it gets easier for you too x

[helenfirebird]

I'm really pleased that your daughter managed to get to her appointment. As we all know in many ways the consultation is a much easier appointment but more difficult in that you have to talk and listen. Is there any way you could suggest to your daughter that if she does have Lupus that you will face coping together. She might be feeling that she would have to cope alone as you are still learning about yours but could it be a learning curve together? I am thinking of you today.

Helen

[Hidden]

Hi, I feel for you, my 11 year old has lupus like ailments but I just hold my breath and cross my fingers, my gp is well aware of my fears and we're just keeping an eye on her. My only suggestion would be for her to chat with someone her own age and not to push it until she's calmed, you know what stress does to us, plus we go years without diagnosis, would an extra week or too really be life threatening? Sorry I haven't read your first blog so I maybe talking utter nonsense. She should also know that she is unique, how lupus might affect her differently to you and any other person with it. Bless you both, just give it time if you have that luxury. Xoxoxo

[Britchick42]

im sorry its always so difficult. Every time my daughter has to have treatment i feel sick inside. I h ave just tried to tell her that this time they will be able to give her medicine to help her get better so that the pain will stop and she will eb able to get back to school and be with her friends.

Im so pleased you were able to get some decent treatment there . Thats half the battle. Best of luck

[letslaugh63]

Don't know what to say except good luck.tell her she needs to fight this and you can do it together because it will be better with the two of you fighting together.ask her to give you a name ex comrades in arms or anything she can think of that makes you sound fierce and ready to fight x

[nicky1234]

hi purple lou,

well done on getting her to go,

you have to be firm and tell her she is 12 and has to do as she is told.

i know its hard hun i went through it and tried everything,

i told my daughter i am not her sister i am her mum and she will go to hosi etc.

the thing is what does she know about lupus?

bless her she sounds terrified of having it.

my others daughters dont want to know and when they get lupus symptons they wont go docs, as they say its the knowing thats the problem.

while they dont know they carry on in their jobs social life etc.

{they only get small problems like aching knees etc}

good luck.