Hi all I am new to this group and lupus my doughter recently diagnosed SLE, she is 10 year old started fever in Jun and later she got rash allover the body and chills, got admitted to hospital they did bone marrow and other antibodies tests concluded as lupus. Now she is fine but taking medicines steroids, mmf, hydrochloride, does she need to take all these medicines , can she go to school when she is in medication . It's difficult to make her understand what's going on with her she is panic and scared to take medicines and it's really big to accept it, can you please suggest some tips to recognise flare-ups and how to take care of her.
10 year old got lupus can she go to school - LUPUS UK
Bless her, poor little girl, I dont have suggestions but send hugs.
Hi Radha.If you can I suggest you take the Lupus U.K. membership.you will get all the info you need from them on how to manage this horrible illness for your little girl and you can call and chat to the nurses for advice on their helpline.so sorry to hear this and my best wishes to you both.xx
Will do that thank you
Lots of information available from:
Dearest Radha, I can hear the fear for your daughter in your post and I think anyone who has gone through the bombshell diagnosis process can understand where you're at right now and feel a huge amount of empathy. The biggest problem is that learning to manage it is a process. So there aren't any quick answers as it varies for everyone. Some of these questions are for her rheumatologist eg does she need meds and should she go to school. As to recognizing flares, the best way I can describe it I suppose is that it's how you feel when you have a bad infection. Run down, tired, sometimes pain (joint or headache), sometimes fever, sometimes a rash. The answers will come.xxx
Please contact Lupus UK. We will provide all the support that we can. You are not alone and you and your daughter can receive advice from others. Best wishes Kevin. Chair Lupus UK
Radha, I am so sorry to hear of your daughters diagnosis. It must be a huge bombshell. It was to me and anyone on this site.
I have Lupus and have probably had it since birth but I was only diagnosed at 32 years. I WISH I had been diagnosed and medicated sooner. I think I would have been better off.
If your daughter is on steroids and MMF it's because she needs to be I am sure. No Dr would prescribe those medications lightly to a child. Did she have kidney problems/involvement when she was in hospital? MMF is often used to protect the kidneys and this is vital for your child.
I am glad to hear that the medications have helped her.
You are going to go on a journey of questioning things, not being sure what all this "Lupus" is about, lots of people giving advice etc. It will probably be a bit overwhelming. Stick to the advice of those in the know.
My absolute key advice would be to do as Kevin says and contact Lupus UK on Monday. Those guys are great. They are unbelievably helpful and can provide so much information and people to talk to.
I would advice you to make sure that you and your daughter have a really good rapport with your specialist. It makes a massive difference. If you find you don't gel with the first doctor you can always ask for a second opinion.
I would also make sure that you have a good rapport with your GP. Try to find a good one and see that one consistently. Don't chop and change between different GPs. That's OK for some patients but lupus is complex and seeing the same consistent GP will ensure your daughter gets continuation of care and that will be better for her.
I would also advice that you take things that people say with a pinch of salt. For example, well intentioned people who don't know how complex lupus is may dismiss it or suggest that she take supplements etc. This used to make me want to scream.
Lupus UK will have lots o information about lupus so educate those that need to be educated and don't let others comments bother you. Also, only take supplements if it's been agreed by your medical team. I spent a ridiculous amount of money on supplements and unfortunately no amount of tumeric is going to cure lupus.
Keep posting on here. You'll get alot of support, ideas and advice. Is your daughter sun sensitive? There are always so may tips and ideas on here. It's also a safe place to have a good vent.
Remember that there is life with lupus. Yes, you have to make some adaptations but with good care and acceptance (which doesn't come immediately), there is a good life to be had.
Lastly, be kind to yourself. Be compassionate to yourself. You need to be the best that you can be for your daughter and you will only achieve that if you show yourself compassion and kindness.
Please keep posting and asking for help. This forum certainly saved me many times over.
Take care and best of luck to your family.
Happy Tulip said everything that needs saying. It's excellent advice.
Thank you so much got energy with ur words and hope for her future
Dear Radha,So sorry to read your message here. Not much to add to what has been said, but I have two daughters and both have auto immune conditions and my younger daughter has Lupus (I also have Lupus). She was 16/19 when she was diagnosed and went through treatment plan.
I know your baby is so young. And I know it is scary for you both.
But I assure you, looking at my daughters and our journey, she is a beautiful 25 year old working, earning, and enjoying herself as best as she can.
The key is rest well, eat well, and be optimistic, take the days as they come and be sure that Lupus can be managed. I mean this. All these medications is to make your daughter better, watch her closely and see if there is improvement. Talk to her doctors regularly and try to understand why they are suggesting these medications. What are they treating her for instance, Lupus is a generic name for number of illnesses. Improve her diet and remind her to rest as much as she can. Encourage her to drink plenty water if there are no issues to do that. I guess what I am trying to say is that please be assured that upon completing her treatments, there is a great chance that she will have a normal life. Lupus is not a life sentence. Once you go through the tough times, you can keep it at bay and your baby and everyone around her will learn to manage it.
The key is never to give up, take each day as it comes, and know it will get better with the right care. Yes, there may not be a cure yet, but this does not mean we don't get better. I am and both my daughters are living proof as well as so many people around the world. Please assure your daughter that this is a treatment plan. She will get better, but it may take a bit longer than she hopes. I lived with Lupus all my life, finally diagnosed at 30. But I am 47 and working full time, looking after two dogs, two cats and my daughters without much trouble. I can not wait to wake up the next day to continue our journey. Why would she not have the same or more if she wishes?
Lupus UK is a great site, I am sure you will find the same. With very best, Lale
This is such a nice postive message...im newly diagnosed and it has given me some hope to. Thank you so much 😊
Thank you MK83. I hope you get better soon. x
This is a link for our virtual meetings for parents of children with Lupus and also our Facebook group for same:
Best wishes Kevin
Dear Kevin, I am very happy to see the online event. The journey is very isolating and unknown, and unpredictable. This is brilliant! Thank you so much.. with best, Lale
Hi, I am sorry to hear you are going through all this with your daughter. My daughter was diagnosed at 14 and it can be hard. I’m a trustee of the charity and help run the parents group. If you would like to get in touch contact head office and I am happy to talk to you and tell you a bit more. I am also happy to have a chat and see if there is anything we can do to support you. Take care Sammy
God bless her, she's so young to be going through all of this, loving thoughts are with you ❤❤
Hello, I'm in a similar situation as my 9 year old son was diagnosed with Lupus in February. He was on steriods with the MMF and now just MMF and will start hydroxychloroquine in next couple of weeks. He's also on Aspirin to avoid blood clots. Thankfully the medication is working at the moment. I was apprehensive at first and reluctant to give him all this medication, but lupus does need to be treated and I feel fortunate it's been diagnosed early and can be treated. My son is at school which has been really good for him. We continue to do everything, but just with extra precautions. So glad to see you have joined the Lupus UK and the parents group. I'm a member too and the support has been amazing. I talk openly to my son about his Lupus and the medication and what it does. I think that helps him to understand what is happening. It is scary at first, but talking and reaching out for support will help. Take care xx
Also meant to say keep the school informed of your daughters health. The nurse at the hospital where my son is treated provided a letter for the school. Also every school should have a school nurse, so ask to speak to the school nurse. They will then draw up a care plan which will be coped to all the teachers / staff at the school so that are aware of your daughters lupus.
My heart goes out to your daughter and you as well. The thought of your precious little girl already confronted by all of this and the meds, etc. - so much to take in. You have gotten some wonderful advice here. As far as school goes, if your decision is to send her to school, find someone at the school that you and your daughter feel comfortable with to help be it a teacher, counselor, nurse, administrator so if your daughter is having a rough day or you need someone to talk to, you would have added support. Please stay in touch so we know how you and your daughter are doing.
Healing and hopeful hugs.
Make sure you follow all medical advice given to you including the medicine the Dr has advised is needed. Make sure your daughter takes the medicine as prescribed. Just explain to her that it is required to make her feel better. Just talk and observe what she says and if she seems in any discomfort contact the specialist consultant again. The drs will be trying to stabilise her. Re school discuss your concerns with the Dr. Take care
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