DD aged 16, chronic illness ... what to do??

[Metropoppy79]

My dd is 16 and going into 5th year, but she only managed half a day this term and has been off for going on a month now. She is tired all the time, hates bright light, loud noise, and just sleeps and sleeps and sleeps all day.

I phone the school every day to say she is off, the school has given us work for her to do but her brain is too fuzzy to concentrate. The GP has referred her to Neurology. Waiting for a referral. But what should I do?? Blood tests all came back normal/negative but apparently that doesn’t mean anything, she might still have a post viral infection.

Has this happened to anyone else? What should I do? I work and so does dh, and I feel guilty as hell I am not home with her but when I am, she doesn’t need much, just sleeps all day. Does anyone here have experience of this? Will she have to repeat a school year? Will she ever get better?

Any advice gratefully received.

bump

I'm sorry to hear about your daughter. It sounds like when I had ME as a teenager. I didn't repeat a year but my grades took a complete nosedive. I was off from January through until final exams of my A level year, I got 5 As at AS level, my Alevels I got ACC basically coasting off my coursework and AS levels. I couldn't do exams, I was assessed only off coursework. I slept 23 hours a day, too weak to open a door handle, fell asleep even standing up. I'm not saying that's what it is, but it certainly has features of ME/CFS.

i was thinking ME as well, OP. I didn't get it until much later in life, but at first I too slept most of the time. Eating was a problem too - I was just too tired to eat.
i do remember a friend's son with similar symptoms though, and it did eventually turn out to be glandular fever; I think they had to do the test for it 3 times before it came up positive. He kept going back to school and then relapsing and having to take time off again.
Best wishes to your DD.

Thanks for answering! Is there an end to it? Does it just go away one day?

I am despairing of the whole thing. I know I shouldnt. It might not be M.E..

Should I change her diet?

I have heard that any amount of blood tests sometimes doesnt show up glandular fever but it can be that... I kind of hope it is cos that has an end to it.

There are a couple of charities which have helpful websites. The ME Association, and Action for ME which has a section about ME in young people, I think.

Sorry I don't know how to do links on here, but they are easy to ifnd on Google or whichever search engine you prefer..

I'm so sorry you're having this worry, OP

Hi Op. I suffer several long term chronic diseases and while I cant tell you what you should do, I can certainly offer some insight into what I would do, based on my own experiences as a patient and as a mother of kids that have jad school issues themselves.

Right now, my main concern would be her health. That would be the only thing I focussed on. School work is all well and fine for healthy children but the world will not end if she has to repeat a year. Or even miss her GCSEs totally and study from home when she is better. The ilness could well be short term of a few months but it could go on. The doctors will hopefully find a way to treat her, if not she will get used to the level of fatigue she experiences and learn to adapt in certain ways. She does not need GCSEs. Or A levels for that matter. If she has to miss them, or fails them due to ill health then she can do an access course and degree with the OU. They are BRILLIANT and they have just started maintenance loans for sick students. The beauty of the Ou is that you can use that twenty minute spell in the morning when you feel ok, and the ten minutes after a nap when you feel a little better. it fits 100% around you and you can do it over 16 years (my first took 12 due to illness but I did it)..

I left school with no GCSEs at all. Despite being seriously ill with several autoimmune disorders, I now have a BA, Ma, am doing a Bsc in STEM and am starting a PhD next year. I am 38. I can work part time and need to know my limitations but oddly, I am happier now than before I got sick as I learned to appreciate things a hell of a lot more.

I would strongly encourage her to focus on her favourite subjects and try to keep some sort of condensed time table so she is kept busy when she is up to it. But as I said, for me the education side of it would be the bottom of my list. I wish you all the luck in the world getting to the bottom of it and hope she improves soon.

So sorry you and your daughter are going through this. My 14 dd has missed a year of school and been very unwell. It started with symptoms similar to those you describe. She was suspected of having glandular fever but never recovered and got significantly worse, being bed bound for 10 months. She was diagnosed with post viral fatigue, then ME/CFS which we found meant the NHS couldn't do anything to help her. My advice would be join as many Facebook forums as you can for information. I did and we found out that my daughter had hEDS and POTS. Try not to worry about school - she can/will catch up but she needs to get better first. Take it a day at a time. If anyone told me in the early days that my daughter would still be very ill a year later I don't think I would have coped. We now desperately hope that she will get better and try not to think too much about when. Trust your instinct and don't always accept medical opinions.

Also, my daughters school told us they rarely have to "re-take" a year. If she's ill for a while and unable to attend school the local authority will need to provide some form of home tutoring. Apparently it's amazing how quickly you can catch up on with a 1:1 tutor compared to being in a classroom.

Sorry if I sounded scaremongering, I agree many people will recover in the short term. Sixcupsoftea, glad you have moved forward with a new diagnosis and that your daughter is still able to do things. How old is she? My daughter is almost 15 now (she became ill a few months before her 14th birthday). She can manage jigsaws & some crafts along with a small amount of Home tutoring & daily physio.

I had something around 20 in France where they do a lot more tests and it was a virus which lasted about 8 weeks then went.

I've had symptoms of long-term illness now for around a year and its very difficult to get help - I've just been referred to lots of cancer tests or told its anxiety / depression (when I wasn't even depressed) or stress. It's very frustrating. My symptoms are slightly different like having flu all the time and lots of bleeding, very dizzy, out of breathe. Get woken in pain in the night. It's much more like an asthma type out of breathe than anxiety. I respond to antibiotics and to magnesium supplements - in my case I suspect its Lyme as I had a strange bite mark around a year ago after going through rainforest.

Hopefully its just a virus that will pass. I would just keep pushing the doctors for answers though I've spent a year doing that not getting very far. Trouble with an ME/CFS diagnosis which it could be is they don't do much to help.

Ds2 (15) is currently diagnosed with 'classic M.E.'

After a big fight with education authority, he's getting 5 hours internet based educational provision, and we have asked to be put forward for an experimental treatment programme, but haven't heard back.

PM me if you need any support on getting education... was a big learning curve for me. But they have a statutory obligation to provide if they are going to be off school for more than 15 days...