Can antone help me?

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Can antone help me?

Post by Sue on Wed Apr 29, 2009 4:58 pm

Hi all my name is Sue, I'm not very computer literate so i hope i have found myself in the right place. I am a 37yr young mother of 3 boys 2,6,8yr olds. My 2yr old boy was recently diagnosed with Discoid Lupus. So if you thought it only happened to women and teenage girls and the occasional male we were wrong. Im still in a stage of confusion and still dont quite believe it as this was only diagnosed 3wks ago. Im just needing somewhere i can come and talk to people and i was wondering if this could be the write site for me. Thankyou for listening:)

Sue

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Re: Can antone help me?

Post by yardman417 on Wed Apr 29, 2009 8:28 pm

Sue
Wellcome to the LWL, sorry you have a 2yr old son with Discoid LUPUS, but with the right drs and the right meds he will be ok.
I am 57 yrs old and was not DX with SLE lupus untill at the age of 48, but after learning about Lupus i now know i have had it since i was very young.
And yes you have come to a great place to ask ?, vent, or whatever. We are a family here and we all try to help each other out. We are not drs but we live with the WOLF (LUPUS).
I am sure there will be someone that will be able to help you out more.

flower from the yardman
Ray
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Re: Can antone help me?

Post by christines555 on Wed Apr 29, 2009 11:03 pm

Hi Sue,

I am so sorry to hear that your 2 year old son has been diagnosed with Discoid Lupus. I was diagnosed with SLE last year at the age of 56. My doctor also thinks I have had this disease from when I was young. I think alot of us have had it from a young age but the symptoms don't always present themselves till later. What treatment is your son getting? It is a shock at first but the more you learn about it, the more it helps you to help your son.

Please feel free to come here anytime and like Ray said it is a great place to ask questions, rant, rave or whatever!! I am so glad you are here with us. I love you

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Re: Can antone help me?

Post by maidmaz on Thu Apr 30, 2009 12:16 am

Hi Sue,

Welcome! I too am sorry to here about your 2 year old son, we all cope with this disease daily and I am so glad it is me and not my children who have it, that would be too hard to deal with.

You have come to the right place, so please come often and ask as many questions as you like, as Chris and Ray said fell free to vent too.

Take Care
Love and Hugs
xxxMaz I love you
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Thankyou for your kind words and advice

Post by Sue on Thu Apr 30, 2009 3:57 pm

Thankyou for responding its a bit lonely out here no one really understands what im talking about. Especially when its in reference to a 2yr old boy. They say to me " Isn't that a middle aged womans disease ?".
My general responce is "Well obviously not." My dermatologist wants me to take my little man back for more blood work as his results were inconclusive as she said his blood wasnt doing what it was suppose to with Discoid Lupus. His white blood cell count was very low and she thinks he may have been fighting off an infection. But he is healthy and does not have a cough or runny nose. I think with all the research i have done i could be a Lupus specialist. Im also going to have my middle boy's blood work checked because he had a mysterious rash on his head behind his left ear, oval in shape. During my research i have found a form of Lupus that presents itself on the face or scalp in the shape of a coin rash. Then i have been thinking that maybe I should even have my eldest checked as he complains of sore ankles ans legs. When do our suspisions stop my GP thought that maybe i was being a bit over anxious when i asked to have my middle childs blood checked and then i mentioned his mysterious head rash and the article i read and we came to the conclusion that it couldn't hurt to have him checked.
Im a person of routine i have 3 boys and a business after i drop the two eldest off to school i go to the gym with the baby. He goes into the care there and i go and sweat it all out. Since Ashton' diagnosis i haven't been i suddenly feel like small things like that just aren't important any more, but i do recognise its important for me to be healthy. I just have an empty feeling inside me at the moment that i cant explain, i have no emotion or expression i feel like im just functioning.Im usually a very emotional type of person i care about other people and their problems i just feel a bit numb at the moment and im not enjoying this feeling at all.
Maybe i just have too much on my plate at the moment and im trying to do too many things at once. Maybe i need to prioritise things going on in my life a bit better and focus and deal with one thing at a time.
Or maybe i just need a holiday.

Suexx

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Re: Can antone help me?

Post by Poppy on Thu Apr 30, 2009 6:10 pm

Hi Sue:

Welcome! You have come to the right place - everyone here will do everything they can to help you.

I know you feel numb right now and that is understandable. I can't imagine what you are going through worrying about your baby having this crazy illness. He is so young and doesn't deserve to deal with this for the rest of his life. As the others have said, though, he will be ok. You need to learn as much about this disease as you can and take care of yourself for you and him.

The one thing you will learn is to take one day at a time. It makes it easier to cope with things - try not to worry about things that may or may not happen.

Your baby boy is so lucky to have you. You will get him through this ordeal and we are here to help you, as well. He needs you to be strong for him.


Take care and give your son a big hug for us. I love you
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Re: Can antone help me?

Post by socalmonica on Fri May 01, 2009 12:55 am

Hi Sue, I'm so sorry to hear about your little guy. My little guy was diagnosed with diabetes at the age of 2 so I can sympathize with you and I know it is very hard to handle when something happens to our babies. But you came to a good place for support. This forum is filled with wonderful people that are family oriented. I have SLE lupus. If you have any questions or any emotions that come up, feel free to post them, that's what we're here for.

Monica

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