Help wanted

[Bewilderedmu]

Hi all my 13yr old daughter was diagnosed with SLE Lupus about 2yrs ago ( after being treated for almost a year for juvenile arthritis). It's all still very new to us & still trying to get my head around it all! My question is, lately she's having trouble concentrating at School & has dozed off in class a couple of times.She has also developed redness on her face on cheeks. Should I contact my GP about this or do I get intouch with her Consultant?Is this a flare up? She takes Hydroxychloroquine 200mg & is on Ascorbic acid 500mg twice daily & 0.5mls Vitamin E liquid. Thanks x

[LalSD]

Hi, I am very sorry to read your post. It is difficult when our children are unwell. I would contact the consultant. If it will take longer then perhaps GP to seek help and possible intervention to reach out to the consultant as well as immediate remedy. Flares can last long time. My younger daughter used to fall a sleep in class due to Lupus (17years old). I made sure she slept long hours, rested and focused on her eating healthy. She did complete her bachelor at a local university. I was difficult.

You may discuss to increase 200mg to 300mg or even 400mg hydroxy but the consultant will advice better. I am not a doctor. We started with 400mg and dropped to 300mg.

In terms of face rush, it indicated a lupus flare. My older daughter also has lupus, and she has the redness flares and I know she needs to rest and focus on getting better. For instance. They both managed lupus by eating well and resting at least 13 hours if sleep and limit activities.

Hope you baby gets better soon. x

[Bewilderedmu in reply to LalSD]

Thank you for the reply x

[Kevin53]

please contact LUPUS UK for our support for young people. Best wishes Kevin

[hootie26]

As for the dozing off, that's what happens to me. When my bifurcation is in motion or I'm active my Lupus dies not recognize when I'm energy level is lie or when I'm tired. I can go on for hours, then crash when I stop. Conversely, I shimmering get up in the morning feeling fresh and revived. If I do nothing I become lethargic, doze off. Sometimes it feels like I'm drugged. I would speak with her consultant, s/he would be better equipped to answer your questions and provide assistance.Good luck

[BeeManShrop]

Hello

So sorry to hear about your daughter and her SLE fatigue. My wife has been coping with SLE for the past 4 years and has had RA for about 20 years. Both of these cause sudden fatigue.

I did not really appreciate exactly what "fatigue" was until I was receiving chemo treatment . I would be pottering in the garden and suddenly I could feel the energy just drain out of me - like a deflating balloon. I had to rush into the house before I felt I would collapse (I never did in reality). I would jump into bed and collapse into a deep sleep. When I described this to my wife she confirmed that her SLE/RA fatigue was very similar. The point I am trying to make is that this fatigue is much more intense than mere tiredness. You cannot fight it and you must submit and get a proper lie down and rest. Staying in a chair is not really a suitable option.

I should say that we are both well into our seventies and it may be different for a 13 year old.

I would suggest that you contact your school and make sure they are aware of the SLE, it's implications and give them the knowledge they may need to have in order to manage your daughters symptoms. SLE is rare in the young and the staff may not appreciate what your daughter is dealing/coping with or how they can help. Some schools have a first aid room where she could take a break and lie down and be monitored by a first aider. Schools can be very helpful. Our eldest granddaughter has Type 1 diabetes and both her secondary school and the 6th form college have been excellent in providing whatever facilities or assistance she needed including separate exam rooms and free use of the first aid room whenever she needed it.

Some hospitals have specialist nurses who (in our case) have been a great help. They will ring back within a couple of hours to discuss any problems or worries you have. They can give helpful advice and if necessary they will fast- track to the consultant if the problem needs escalating.

I am so sorry that I cannot be of more help but fatigue is a very common symptom of SLE that, as far as I know, does not have a simple fix. You just have to learn to cope with it I'm afraid.

Anyway I hope this helps just a little bit.

Good luck to both you and your dear daughter.

[Bewilderedmu in reply to BeeManShrop]

Thank you.When she was diagnosed I received alot of booklets about her condition some of which were for the School to read over.Whilst at Primary she missed about 3 months as she was so ill, her fatigue really knocked her for six she could hardly move from her bed/ the sofa. She lost so much weight they were thinking of hospitalising her but as soon as we got to see her Consultants they put her on Prednisolone and Hydroxychloroquine it took about a year for her to start feeling better. I copied the Teacher booklet for Secondary School, but I feel like some of the teachers are unaware of her illness. I have been in touch with the School in the past but lately I feel another conversation/ meeting is needed!I worry that she's doing too much & not resting enough.She gets frustrated as she feels restricted.

[Tiggywoos in reply to BeeManShrop]

Your explanation of fatigue is really spot on ..

[chrisj]

I had the same problem of falling asleep at school, struggled to wake up at home and often late for school. Poor lass I feel for her xxx

If her next appointent with her consultant is soon I'd speak to him. If not call your GP for advice, don't try and deal with it yourself. Hydroxy was prescribed for me and it helped so much, she may need it increased.

[LalSD]

I wonder if the school can provide resting space with a large beanbag or a dmall bed to sleep when your daughter is feeling tired with a blanket in store. Give her a room with a key and only she has the key. I remember they provided that for my daughter. This might be worth asking.

[JMpurple]

Hi,

My 14 year old son has CNS Lupus and has a similar experience of fatigue as mentioned above. I've had to pick him up an hour after I dropped him off at school this morning for falling asleep. I would go straight to the consultant as there has been a change. I am currently battling trying to get an EHCP in place for my son so the school can access extra funding from the local authority to support him as required. It may be worth talking to the SENCO department at school. All the best, I know it's tough xx

[MusicalFurbaby]

Hi Bewilderedmu, it does sound like a flare-up doesn’t it? I’d definitely recommend speaking with the consultant or your GP, as they may be able to experiment with a higher dosage to see if it helps your daughter. Hydroxy does help many people with fatigue (it didn’t help me with fatigue, but apparently it works for others!) so it’s worth trying. All the best—the fatigue is horrible and so hard to manage. 🌻🌈