Parent of 6Yr Old with SLE, England

[Teresa Austin]

style_emoticons/<#EMO_DIR#>/hugbetter.gif Hi, my daughter has suffered with an unknown condition for 6? years and Great Ormond Street Hospital believe she is showing signs of SLE. Her problems in the past with skin and gut and recently with the kidney but now more severely with the lungs - bronchiectasis and several infections. At the moment I just want someone to talk to who is going through the same thing as a parent as the last 6 months have been the worse since the first year of her life. We live in Essex, England so it would be great to find someone close to talk to.

[Clare.T]

Welcome to the forum although I am extremely sorry what brought you here. There's nothing worse than our children's suffering.
We have another UK member with a 12 year old recently diagnosed also being treated at Great Ormonde Street so maybe she'll see your post. We have a few other members in USA who I am sure can understand and share your general concerns.

It is even lonelier being a parent of a child with lupus than having lupus yourself. I hope you will feel free to use the forum to help you through these tough times, for information and letting it all out.

All the best

Clare

[D BRYANT]

Hello,
I have a 13 year old daughter who has been diagnost with SLE last April. We had a tough time ourselves while they were trying to figure out what was going on. We live in the United States, and had to travel 4 hours to Boston,Mass to Children's Hospital to see specialist who deal with Lupus. If I can be of any help or comfort please let me know. I know how difficult it is to have a sick child, and not be able to make it better for them.

[macfamily53]

[size=1][b]



[color=#FF0000]Dear Theresa

I just wanted to say welcome to thsi wo deful sight. There will be someone that will come along to help you out wiht this or to support you i should say. I just cannot imagine having on eof my tow dignosed witht this diesease. It is something i worry about wiht me having it. I know you came to a good place for support though theresa thats for sure and lots of imformation to. I will be praying for you and your daughter to make sure she gets the proper help and care she needs. You take care of that precious little girl of yours.

LOts of good wishes for you

Tammy style_emoticons/<#EMO_DIR#>/hugbetter.gif

[StevieM]

Hi,

Sorry to hear that your daughter has lupus, I can honestly say that I know how you feel. I am the Mum of an 11yr old daughter with SLE, she is also under Great Ormond Street with kidney problems, as well as two other hospitals.

I would be happy to talk with you anytime, and we don't live to far away from you as we are in Berkshire. Please PM or email me (address on the site) or come into live chat as I am there a fair bit style_emoticons/<#EMO_DIR#>/smile.gif


All the best,

Stephanie

[Teresa Austin]

Dear Stephanie and other parents

I'm new to all this computer lark - I tried to go into the chat room but was unable to . It would be great to talk to you or any others who may be able to share my views. My email address is stephen@saustin48.fsnet.co.uk. I emailed you on Sunday and again today as not sure if I correctly did the Sunday email

Teresa

[meg4340]

Hey,

I have a 15 year old daughter that is diagnosed with common variable immunodefiency CVID and also broncheactesis. She has been homebound from school for over a year. She takes monthly infusions of IVIG and has been very limited in her activities. I have lupus/fibromyalgia and oseoarthritis. Would be glad to exchange emails and "talk" about the problems of sick children. It is a tough and lonely position to be in! You can email me by clicking on my name at the left and it will take you to my profile.

Love,
Karen
Louisiana

[dogsarefun]

<div class='quotetop'>QUOTE(D BRYANT @ Jan 19 2006, 12:32 PM) Quoted post</div><div class='quotemain'>
Hello,
I have a 13 year old daughter who has been diagnost with SLE last April. We had a tough time ourselves while they were trying to figure out what was going on. We live in the United States, and had to travel 4 hours to Boston,Mass to Children's Hospital to see specialist who deal with Lupus. If I can be of any help or comfort please let me know. I know how difficult it is to have a sick child, and not be able to make it better for them.
[/b][/quote]
I too have a 13 year old daughter who was diagnosed with SLE when she was 12. We live in Canada and are fortunate to have an excellent Pediatric Rhuematologist within a short travelling distance. Fortunately, my daughter's butterfly facial rash and blood test made for a quick diagnosis. It is very difficult to have an unwell child. But I keep reminding her that "the whole family" has Lupus and she isn't in this alone. Does your daughter's friends and schoolmates understand her illnesses? I'd like to chat so more but I gotta go.

[StevieM]

Teresa,

Just a short post to say hope all is well with you and your daughter. I have emailed you a few times but so far no reply, but I understand how time runs away when you have a sick child. If you would like to talk please reply to this post and I will get back to you. Contact me via the site or email smilner@superlative.org.

Best wishes,

Stephanie

[Christine UK]

<span style="font-family:Century Gothic"><span style="font-family:Comic Sans Ms"><span style="font-size:14pt;line-height:100%">Sending all you mums and dads a hug.....
i have two children and its my worst fear them having Lupus.
I love terris idea...maybe its a thought for you all ? x x x</span></span></span>

[natfab15]

Hi

I live in Essex. I have just found out i have lupus. Im only 19 so my mums taking it hard. She would like someone to talk to about it. My email is sparklinggirl86@aol.com. Contact me.

Love

Natalie xxx

[Teresa Austin]

Dear Stephanie

I haven't received any emails from you - so sorry, my email is stephen@saustin48.fsnet.co.uk
chloe is doing really well at present but only time will tell now as she has slowly reduced to 5mg Prednisolone now and being review at GOSH in 2 weeks time. Her CT scan of her lungs came back really positive so hopefully things should be on the up for a little while. Would like to chat to you soon via telephone - Teresa

[balla]

Hi so sorry to hear of your daughters illness all will try and help the best they can on this forum, I have two girls although thay don't have lupus both have Raynauds,Started at 13 my eldest daughter has raynauds as well as perniciouse anemia she is 20 now takes asprin for life along with b12 injections every three month. She also as kidney problems, My youngest daughter age 13 as just started with raynauds and as gran-mal epilepsy, We are helping genetics at great ormand street du e to kidney problems in the family. I lost my first baby to potters syndrome,(born without kidneys). I also have kidney disease and have had one removed.I to have autoimmune disease Doctors thought M.S for past 10 years now suspect systemic lupus.
Can i ask have you got any autoimmune disease's or any of the family. It is realy hard when your children have such a life long illness i do hope you get all the help you need,please feel free to email me on suziewong@talktalk.net, Sorry but i don't live near as we live in cumbria but everyone is only a few clicks away. bye for now susan x style_emoticons/<#EMO_DIR#>/foryou.gif