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LUpus Patients Understanding and Support
2,811 members β€’ 674 posts

My 9 years old daughter has lupus

Hello , my daughter has lupus. We come to know about last week. It's really very bad time for us to accept it. She is also very dippress . I can't understand how to handle this. Really I am also broke down .

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I am sorry to read this and understand how you may be feeling overwhelmed and anxious.

The good news is that there has been major advancements in diagnosis and treatment over the last 30 years so there is every good reason to be optimistic.

It's important to try to give that sense of optimism to your daughter

I am away from my computer but I will reply further later this afternoon.

With good wishes,

Ros

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Thanks it's really very motivating message for me. She was getting fever from 24 Jan . I was going to GP everyweek . Dr said back to back viral but fever was going up every week then she got rash . In blood test hyperthyroid came. Dr gave medicine for that. I gave only 2 days medicine then Dr called that her thyroid level is coming itself down don't give medicine now. I stopped giving but her face and eyes swollen . Then Dr refer to hospital then there they come to know that she has lupus. We are going back to our home country in last week of this month.so little worried about flying she is on steroid. and what suncream to buy could you please help for that.

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May I ask what is your country of origin? I would like to know so I can look up any lupus specialist who may be of help. I know you are worried but children pick up on their parent's feelings. Even after you fly home, you can contact me here or on my other website: LUpus Patients Understanding & Support (LUPUS). I will message you with the details.

I probably had SLE from a young age, but it wasn't diagnosed! As I said, there is every good reason to be optimistic about your daughter's treatment. It is very important for her to lead a "normal" life. If you are feeling overwhelmed, I would suggest you think about talking with a counsellor/psychotherapist where you can allow your emotions to show with someone who is unrelated to you!

It is always better to buy sun screen in the country you will be living in, but as you require sunscreen, I would go into a pharmacy eg Boots and speak with the pharmacist. Buy the highest factor - and see if there is something for children.

As you may know, many people with lupus are allergic to the sun. Always ask your daughter to wear a hat - and if possible, buy a hat that filters out the sun rays. There are also clothes that filters out the sun, but they are expensive! There are also umbrellas - for the sun.

If you are worried or have questions about flying, ask to speak to the doctor. It is not unusual to get temperatures, so always have with you in your bag, medication to reduce her temperature - ask the doctor or pharmacist for any recommendations.

I will message you the rest of the information.

With good wishes,

Ros

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India. Thanks for your reply . I will check with boots. And my daughter has appointment next week . I will check with Dr. About the fly. Really thanks fi am feeling much better now after joining this group

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Hi Taniavi,

You must be so overwhelmed with the news of Lupus. But as Ros has said there is so much help for Lupus now. You are fortunate to have a diagnosis earlier rather than later. I know that sounds almost cruel, but she could live with symptoms for years without anyone properly knowing what's wrong with your her. As a Mum that would kill me, well does kill me because my daughter and myself are both undiagnosed.

But now you know I pray you can start to move forward with medical attention.

Nowing what your fighting is so much better than punching in the dark.

Things will hopefully get better not worse.

Wish you the best

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Hi shhilo, thanks for your reply . really it's give me positively. I have one son too so can I have to go for my and his test for lupus too?

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Keep us updated!

I wish you warmest thoughts and sending healing light and energy πŸŒžπŸŒžπŸŒžπŸŒžπŸŒžπŸŒžπŸ§šβ€β™€οΈπŸ§šβ€β™€οΈπŸ§šβ€β™€οΈ

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Thanks , I will update .I have one question if my daughter has so it may possible that I will also get in future because Dr told it's genitive

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I can't really answer.... I keep getting refused to be seen my Rheumatologist for anything. So I have no answers. My daughter doesn't seem to want to go to Dr but I really feel she should, of course.

Keep in touch

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