I am terribly sorry that your daughter has been given this diagnosis but I am glad they are starting treatment. It will take Plaquenil (the med she is on) several months to get in her system and really work. Some of us have absolutely no trouble taking it and and some do. It is the first line drug for Lupus Treatment but you don't see it quickly.
A word of advice to you about doctors appointment. Write all questions down and take the paper with you. Once you get in there you get bombarded with things and forget. I would also suggest getting a copy of all your daughters tests and doctors note and keep them in a folder. Too often I go to doctors appointments and they say "We will have to discuss that next time because I didn't get the results". If you have them with you that can't happen. The other thing that I found helpful was to type up a single sheet, very brief history of the disease and its affects on your daughter. Don't give it to the nurse when you have them the test results to copy. Keep this one and give it to the doctor when he comes in. If you do this he HAS to read it and not just toss it in a file.
I hope this helps and I am so glad to have you with us. It sounds like you are doing a fabulous job with your daughter and she is very lucky
The Following 2 Users Say Thank You to tgal For This Useful Post:
Hquest (07-14-2011), steve.b (07-13-2011)
I have no idea why or how this thread got closed but I am re-opening. I am sure it was operator error (me) due to the shaky hands
The Following User Says Thank You to tgal For This Useful Post:
i am glad she now has a name for her problems.
with a name..... medication can begin.
please read again what tgal has written.
she has written some very good ideas.
it can save months of heartache.
The Following User Says Thank You to steve.b For This Useful Post:
Congratulations on finally getting somewhere (: I know it really sucks, and i'm sure it will take a while for it to really set in, and even more time for you to adjust... but for now let's be happy with the small victory of getting her diagnosed and on a treatment plan. I know that's easier for me to say, but i'm a believer that celebrating the small victories helps you get through the hard times.
Stick around here so that when it does set in - you have somewhere to really let it all out and whine or rant on here. It's hard to do that in front of the people close to you sometimes, but all of us here will understand and support you through everything.
Blessings...say strong, take it one day at a time. You can get through this, and help your daughter through it as well.
The Following 2 Users Say Thank You to Elo For This Useful Post:
Hquest (07-14-2011), steve.b (07-13-2011)
I have finally noticed the "Thanks" part of posts! A very big Thank you to you all for your advice.
Tgal, I think getting a copy of blood tests etc is a really good idea... just unsure about the system here in comparison to the US. Your post is full of good advice. I will certainly ask as I know how issues can arise and complicate things later on, already I feel that it was dealt with wrongly from the start, especially considering her GP put her joint pains down to 'growing pains' two years ago and didn't even look into the causes even though I was saying she's crying with the pain at times.
However, it was very different yesterday. There was a consultant and registrar rheumatologist and a consultant in general paediatrics. They took it all so very seriously and we were there for about 1 and a half hours. I suppose it's restored my faith in the medical profession and the way they explained to my daughter how this disease affects her was good and they didn't mess around with explaining possible side effects either... this was after I asked my daughter to go and get a drink with her god-mother.
Elo, thanks for your post... I'm sure I might need to vent sometimes. In some ways I felt relieved by the diagnosis, but it was still a shock, even though I strongly suspected Lupus. To hear the doctor say that this is what she's got wasstill hard to accept. Wierd, eh? I'm still finding it hard to face the reality of it and what it all means. I suppose it's just taking one day at a time for us right now. I know you mentioned that you have yet to be diagnosed, are you on any treatment at all?
Steve, I looked back on this site before I set off for the appointment and saw your post... it was so encouraging, thank you! I had it in mind to be her advocate, and she was so good at explaining how it all affects her. I was, and am, so proud of her!
CWARD, it really sounds as if you had such a hard time getting the doctors to accept what was happening. One of the things I have found out is that children often have it worse because of the delayed diagnosis and subsequent treatment. I'm so sorry that you and your daughter had to go through all that before you got the right help. It really is appalling! More needs to be done to educate the health profession, to find better meds and a cure.
Last edited by Hquest; 07-14-2011 at 04:38 AM.
The Following 3 Users Say Thank You to Hquest For This Useful Post:
Gizmo (07-25-2011), steve.b (07-14-2011), tgal (07-16-2011)
I'm so glad you found someone who actually listened and took it seriously. It amazes me sometimes, that doctors brush off people who are legitimately sick, especially who are so young.
I know what you mean about the diagnosis. I was sick for every day for about 6 months - nothing, compared to so many others, but from day one I knew something was wrong. I assumed it was just a bad "feel like crap" day, but after a few weeks, I knew it wasn't normal. I spent a long time finding a doctor who would actually listen to me, and not just write it off as stress or whining. Went through four of them... finally found a doctor who ordered the right tests, but she told me that seeing a specialist would probably be too expensive for me and not worth the cost.
Long story short, the only things I'm taking are fish oil, vitamin D because I don't get out in the sun much, and antianxiety/antidepressant medication because I started having panic attacks when the pain got too bad.
Man, I got off track there...my point was, for months I knew something was horribly wrong, and I finally got diagnosed with having an autoimmune disease, but nothing else. That afternoon when I found out, I was in shock. Ecstatic, at first - Finally! I'm not crazy! Or a whiner, or making myself sick- it's an actual condition! And they've found it! Hurrah!!! - but after a day or so, more in shock. I wasn't really grasping the full meaning, and in a lot of ways, i'm not even there yet. It's very hard to accept, you're right about that. It's been about a month and a half, and i'm still waiting for the moment when it hits me.
Still, this forum has been crazy helpful to me, and i'm sure it will be for you as well - you can come back here and just spout off when you have those moments- the ones you'd rather your daughter not see.
I'm so glad your daughter has you to advocate for her, and I really truly hope she starts improving soon.
1 1/2 hour appointment is good.
that was plenty of time for them to check out lots of things.
i am glad it went well.
It sounds like you came across to good specialist's who explained alot to you and the amount of time you was there was good plus it helps you on taking things in and questions you need to know.
Hows your daughter feeling now and i hope it's a better day for her...please keep we updated.
Thanks for your message and encouragements!
My daughter's resting on the sofa most days and seems to have more energy towards the end of the evening. She's asking a lot of questions about it all and we're learning a lot together. Obviously I'm shielding her from the few and far between worse case scenarios that we all know about. Remaining positive is the key. Did you know that there is a support group in the West Midlands? It's part of the LupusUK charity.
Hope you're able to take it easy!
The Following User Says Thank You to Hquest For This Useful Post:
We like to hear updates on member's and how they're keeping healthwise.
Alot of us lupus members are well drained out till after dinner and the rest will do her body good...most days i don't get dressed until 1 or just after in the afternoon through the Lupus and meds i take besides.
Learning together is excellent and keeping the worst parts from her is even better till your daughter knows what she's really got besides and that's when you face things together more, if anything else shows.
Joy actually i did'nt know there was a support group in the west midlands because when i was in the day unit up the hospital for my kidneys, the sister was chatting with 2 nurses and told them patients usually get councilling if needed as alot find it hard to deal with but thanks again for mentioning it.
Love to you both Terry xxxx