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Discussion Starter · #1 ·
Hi,

Not sure how to go about this any more - never received any responses to my last post. I have spent the whole day in Alder Hey today with my daughter and I dont know who feels more tired. Kirsty has had urine tests, extensive blood tests, chest x-ray and ECG. I want to cuddle her but she just turns away and because I am tired I get ratty.

She is not eating and has when she does she vomits - she is breaking my heart .......help me someone to help her...............I am really upset and her results will not come back for weeks- can another parent please give me some strength?

Carolyn
 

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Hey Carolyn, I can't have seen your previous post.
How old is your Daughter? I have Lupus, APS and a few other things and my Daughter has just been confirmed with Lupus in addition to her APs plus they found a heart murmur which was never there before.
She is 16 and I find I have to hold back as she hates too much fuss.
I am sure you are really tired at the moment.
Try to make life as easy as possible for yourself, TV Dinners, don't do the dusting. You need to rest yourself a bit as you are getting stressed.
Do you have a good GP. They can be a great ally.
Sending you a hug anyway.
x Lola
 

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(((( CeeCee ))))

This is a copy of your previous post. It is better to start a new thread when there's something new to announce, as posts tend to get more attention than when tagged onto a 'old' thread.

Hi there

Not sure I should be posting this on newly diagnosed any more - daughter had her appointment on the 17th Dec and the Rheumatolgist was fantastic! He asked all the right questions and for once I kept my mouth shut and told my daughter to open hers and tell her story instead of relying on me! There was a physio there along with another specialist and a nurse. Of course, my daughter was full of beans and in perfect health at the time! - However, the consultant was not fooled by this and was not convinced it was Lupus! I was pleased by his response - he was very concerned that she has a problem and he wants to get to the bottom of it - dont get me wrong - he has not ruled out Lupus but he is being thorough! We have a very quick appointment on the 9th January for a full days tests in Alder Hey in Liverpool UK - considering our consultation was on the 17th December I think that they are really worried about her condition - all the MRI scans have been recalled and I am at my whits end now! I will say again that my daughter has never shown any of the serious problems of Lupus - apart from one eye defect that would have gone unnoticed apart from her optician. Of course she has has had more than her fair share of symptoms such as Malar rash, Aleopocia, sickness, migraines, depression, severe mood swings, tiredeness UTI's etc etc but not had any really bad stuff that I read here. ( I may sound flippant but dont forget she also has underactive thyroid that can account fot alot of this too). She is no longer taking Tetralycyl under the orders of Alder Hey - think it may be Drug induced Lupus although I doubt that as she started that 6 months after the seizures.

Anyway - happy new year to everyone and thanks for help so far.
These hospital days are so draining all you want to do is zonk right out

It has got to be so hard dealing with a sick child and even harder when it's a teenager given that it's usually a tricky stage anyway. It must be a tremendous effort staying calm, strong, positive and reassuring for the child when your heart is breaking and you're worn out and anxious.

I haven't had to deal with lupus or any chronic disease just the usual crises with major teenage problems and that awful anxiousness you feel when they are taking make or break exams and so on when you can't help them. You have been through so much the past few years
I felt some wry amusement at Lola's comment about not liking being fussed over because my mother fussed so much over me and made such a big deal of anything I stopped telling her anything unless I had to.
It wasn't any comfort and just added to my own concerns. She would "poor- darling" me until I not only felt worse if I was unwell, but angry with her.
You'll often read on here how much even adults dislike over- solicitude.

You're right - the carer needs to be cared for too! I think it's a complicated topic and so much depends on the relationship, the larger family set up and what ways there might be for getting direct professional help which is often not much. It is excellent that the doctor gave her the chance to talk for herself and she should have the chance to see the doctor alone if she wishes for part of the consultation. You might need that too. Something to think about and fix up. I think children's hospitals might have psychologists to help with the special problems and family support ?

I hope you will get some strength here - often just being to talk about how you are feeling is a help.


If the vomiting continues you will need to see the GP to get it fixed, you'll know already that it's important she doesn't become dehydrated and if she's on any other meds they might not be absorbed and effective.
Your GP might have some ideas how you can each get support and as a family. You could possibly benefit from anti depressants and you should have a check up yourself. Don't neglect your own health - get checked for anemia and thyroid if you haven't already.

I hope you will recover soon from this ordeal and find activities with your daughter that you both enjoy to encourage partnership and togetherness, to take your minds off the worries and strengthen for the next round.

There is a young person's forum here - even if she doesn't want to post she might like to know how well other young people get on. Of course you might not want her reading your posts and she might not want you writing about her, so I don't know how you would get round that.


Bye for now - keep in as close touch as you like. Have a look at the Pediatric forum too. Maybe post on there. We do have a few parents of already diagnosed children. I think there's often private contacts through PMs.

Thinking of you and of your daughter

Good Luck

Clare
 

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Hi
I just wanted to say that from your daughters point of view aleast she knows that you love and understand her and is always there if and when she needs a cuddle or abit if advise.
I personally never had any of those, my mother kept telling me that it was all in my head i either wanted time out of school, or work even when things got very bad,
my was she ashamed when it turned out something was seriously wrong, but by then she'd ruined our relationship and even now its never been quite the same.
I just feel i can't turn to her or talk to her about it anymore.
So just be there for your daughter with a cuddle, because everyone needs them.
 

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Discussion Starter · #5 ·
Thanks

Thanks for the replies.

My daughter is 16 in just over a week. She is doing really well keeping up with her schoolwork but it's really hard for her at times. The school is not very supportive and more interested in their attendance figures which makes me mad at times and adds to my frustration.

Clare - you are completely right about the hospital days and probably why I felt so low yesterday. We were at the hospital from 10 am to 4:30 pm and we were both so exhausted. We were planning to go to the cinema afterwards but we were both so tired we came home and went to bed instead. Also, last week was particularly hard as she was having a bad week and apart from the vomiting was in pain and finding it difficult to walk. There were no smiles and just a dark cloud over the house. I try to keep her spirits up but I am only human and occasionally do get frustrated and annoyed which does not help.

I love my daughter very much and just want it all to go away. I feel very useless at times when she complains of being unwell as there is nothing I can do to make it better. A mum is supposed to make things better and have answers for everything. The only result we got yesterday was that her eye defect is definitely nothing to do with the eye itself and has definitely been damaged due to some other problem that has occurred. There is no guarantee that this "something" could happen again and affect another part of her brain.

Her grandmother is very supportive but sometimes I think my partner thinks she puts it on which makes me angry. He does not seem to understand how she can be perfectly healthy and full of beans one week and then floored the next.

I suppose my worst fear is that they find nothing and then we are back to square one with no answers. Part of me wants there to be nothing wrong of course but it will not help my daughter and will not explain why she is feeling the way she does.

I am finding it hard to concentrate on work at times and I do have a sick feeling in my stomach which probably is a little bit of stress. I wont let it get too bad before seeing my GP and will definitely take her to the GP regarding her vomiting.

Again - thanks for the support and will keep you posted on the results of her battery of tests done yesterday - hopefully it wont be too long before we get some news.

Carolyn xxxx
 
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