Chronic Fatigue in teenage daughter. Experience anyone?

[twentyoneagain]

Dd2 was diagnosed with CFS earlier this year and had a bad six months. After a restful Summer she seemed so much better and started school in September full of enthusiasm and hope. I guess it's all been too much and she now seems to be falling by the wayside again.

I know the only answer is rest and there is no quick and easy way to deal with it. Just wondered if anyone else has any experience of this with teenagers and perhaps can give me some tips.

Dd2 is 13 and it is so hard for her having to miss out on such a lot of school, not to mention the social side of being a teenager and being with friends. It would probably help just to talk!

Anyone ?

Sorry, can't be much help I'm afraid but did she have her iron levels checked when she was diagnosed? I'm sure she did as it's quite an obvious thing, but just wondered?

can she go to school part time rather than full time?
I had almost a year off school when I was 12 with post viral fatigue. the worst bit was that none of my friends really kept in touch and I don't think my mum made any effort to help with that tbh. can you phone up some of the mums and encourage them to ask their children to stay in touch?
does she use the internet much to socialise?

I am recovering from CFS and was advised by a friend to see Jan de Vries, who does clinics up and down the country, and who helped her teenage son; or if you know a good herbalist send her to them

the only answer is not necessarily rest, there are things to try

there is a good book by Fiona Agombar on yoga for fatigue, she also runs yoga courses - if you google her you can find her website

I have post viral fatigue after catching Glandular fever. She needs to set achievable goals, maybe full time school was too much, why not part time until she feels able to cope. The school nurse is a good person to chat to.

a relative of mine swears by Jan de Vries. she was ill for years beforehand.

The key for me was pacing rather than doing loads when i felt well & then being wiped out later.

One strategy is to break your day down in to daily tasks & grade them as high, medium & low grade activity.
Once you have graded all the activities set regular 20 min rest/relaxation breaks in between - this should be total rest - so no TV or other stimulants.
I started with 5 20 min rests throughout the day & limited my activity to only essential activities, gradually as my body recovered my rest breaks reduced & my activity level increased.

Hope she is feeling better soon

Thankyou for all your replies, there are some really good hints here.

DD has had every test going and we know she is not anaemic. Her friends and the school are being great and helping as much as possible. I shall certainly look up Jan de Vries, and think the idea of grading the daily tasks will certainly be worth doing.

It is really hard, I think for any parent when your children are ill it is one of the worst things. Any more ideas gratefully received.

Have you seen a paediatrician and/or a physio who specialises in children? There are lots of issues that they could help with. Sleep management often one of the key things to get sorted - cut out any daytime naps, get up in the morning at a consistent time etc. Pacing activities really important and agree with others that part-time school might be best at the moment. Fitting in time to socialise also really important - but trying to avoid overdoing it one day and then suffering the next. Maintaining some form of gentle activity/ exercise also really important. There's often no one solution but a package of strategies - but you might benefit from some help from a paed or physio importnatly who has experience of treating teenagers with CFS. Good luck.

there's a fantastic specialist in Bath who helps lots of children with CFS to manage and hopefully overcome their condition. CAT me if you'd like me to dig out her details.

funnily enough I was reading about the lightning process today,apparetnly Esther Ranzens dd was cured by it.

I can totally empathise with yor dd, i had a really baby viral infection when i was 10 which left me with terrible fatigue. This is back in the day that they liked to call ME yuppy flu and you were lucky if you found a doctor who took you seriously.. Lucky for me one GP did take my fatigue seriously and sent me to the Royal Free Hospital for further tests, i was diagnosed with Post Viral Debility.

I spent alot of time off school initially and when i did go i remember vividly dragging myself home feeling like i was going to collapse.

I thank my mum for something she did for me because i believe it helped my recovery. She stopped me from doing any sort of sport in or out of school for a good while. My godmothers dd who was a couple of years older than me ended up with CFS too. Unlike myself she carried on doing sport/PE and there was a big difference in the speed of our recovery. I definetly feel rest and no over excertion was the best option.

I don't know if there's anything in this but a common denominator with both of us was that prior to being struck with a virus and then this god awful fatigue we'd both been super fit for our age. I was a member of the local athelitics club traning four times a week and taking part in cross country races frequently. My friend also did alot of sport on a regular basis. This seems to be a factor with alot of people i've met over the years with ME/CFS. I have also seen some push their body to do exercise once over the worst of the fatigue in an attempt to strengthen it but to me the best option is rest.

On some level my fatigue lasted till i was about 18/19. It was hard going through my teenage years always feeling i had a limit to what i could do, i really can sypathise with your daughter. I know how helpless you must feel too as a mum as i watched my mum in the same situation. But i can say from being the teenager that my mums support was greatly appreciated (even though i don't know if i ever told her at the time)it kept me positive because she was always proactive in helping manage my fatigue, her understanding of what i was going through made such a difference, she was definetly my rock through that time. Now in my 30's with two children myself i look back and i'm so thankful to her for the pressures she took off me both mentally and physically especially with regards to the schooling i had missed, i always felt she was proud of me and only ever wanted me to do the best i could do. I hope i can give my children the same sort of strength if they are ever ill.

Just found this discussion today. I too have a 13 year old daughter with CFS. She has had it for nearly 2 years now and the hardest part is the effect on the whole family as there is no pattern to whether she feels better one day or the next. I have struggled to remain positive and patient!! We have found that pacing has worked to a degree but following a setback in Nov we can't seem to get back to it effectively. Also acupuncture has really helped headache and pain and 'cupping' has helped energy levels to a degree. It would be great if anyone reading this could give me any ideas they may have as I have really enjoyed the supportive comments. Dr Ester Crawley is the doc in Bath and she was great when we saw her and is totally pro v. strict pacing. The problem is getting a teenager to do it all again....

Just found this discussion today. I too have a 13 year old daughter with CFS. She has had it for nearly 2 years now and the hardest part is the effect on the whole family as there is no pattern to whether she feels better one day or the next. I have struggled to remain positive and patient!! We have found that pacing has worked to a degree but following a setback in Nov we can't seem to get back to it effectively. Also acupuncture has really helped headache and pain and 'cupping' has helped energy levels to a degree. It would be great if anyone reading this could give me any ideas they may have as I have really enjoyed the supportive comments. Dr Ester Crawley is the doc in Bath and she was great when we saw her and is totally pro v. strict pacing. The problem is getting a teenager to do it all again....

Just spotted this. I have a 17 year old daughter who has had ME since she was 15. She is effectively housebound but has was at one stage bed bound. She had a home assessment by Dr Crawley last June and has been pacing every since. Have you found the ME websites - AYME is very good for teens? If you need links I will dig them out. The key for this illness seems to be pushing yourself too much takes you back not forwards. DD got ill following a viral illness. The school kept encouraging her to go in for a few hours and really it was too much and she just got worse and worse. Trouble is it's the opposite approach to what is accepted by education and most of society.

I just found this too my middle son ged 13 is having tests to determine a m.e diagnosis.

Apparently at some point hes had glandular fever and never recovered

twentyoneagain I'm really sorry to hear about your dd. My 5yr old was diagnosed last April with CFS/ME having been ill since chickenpox in April 06; I really really empathise and please send our best to your daughter.
My son hasn't been able to go to school: if he goes there for even a half hour it can take three weeks to recover because it isn't just physical exertion that fatigues him but also any type of sensory overload. His dependence on me increases alongside his fatigue and/or other symptoms.
What we have learned is that the only way for him to have any type of life, and try to get better, is to keep everything as stable and restful for him as possible. R&R really does seem to be the only way forward.
We also firmly believe that a brilliant herbalist (Jo Dunbar of Botanica Medica) got him over the first, and worst, initial phase of this illness. I feel that if we hadn't seen her he would be much worse now. She does phone consultations.

I was also lucky enough to have some email contact with Dr Nigel Speight who is well known, and respected, for his work with children with CFS/ME and he agreed that the best way forward is to not push them and ensure they get the opportunity to rest and recover.
So many times I have heard from other parents who say that they feel that pushing them too much initially caused a relapse that left them worse than before.

There are a number of very good website out there that have lots of good information on all types of post-viral/Chronic Fatigue illnesses: Foggy Friends (www.foggyfriends.org/) is a very good site for support and info; Association of Young People with ME (www.ayme.org.uk/) also has lots of good information on education rights for young people; and The Young ME Sufferers Trust (www.tymestrust.org/) is invaluable for support and they also tend to advocate "what suits the patient" rather than what the current NHS thinking is on treatment for post-viral patients.
Also-AYME have a great website where the children themselves can chat and make friends, meet penpals etc. It could be ideal for your daughter?

I'm so sorry that my reply is so long. Please do email me if you ever need a chat: [email protected]

All the best xx

Can I ask you chocoholic How your DD is now? We saw Dr Crawley last Dec and DD aged 13 did pacing v. well and was back to full time school in Sept. Now she's had a relapse and is refusing to do such strict pacing although she is happy do do a looser version. Says she hated her life then and doesn't want to go back to it . Also won't go on ME websites. ( we are working with a therapist to sort out her emotional response to this!) School seems to be in one day out next in next out and out!!! Any ideas? School are being good but yes they want her attendence up. Anyone had a tutor paid for by school?

Optimistic - sounds like your DD is in denial. When we saw Dr C last June, DD was unable to walk, had to be in a darkened room, slept downstairs because she couldnt get upstairs, only able to be out of bed for a few minutes. She has now moved back up to her bedroom, can walk around the house fine, light is fine, she can have very short outings (say 10 minutes) in a wheelchair but anymore than that and she suffers afterwards. So she still has a massive way to go to get back to normal life, but, compared to where we were it is a vast improvement. I was very relieved when she reached the age that she didnt "have" to be at school. She somehow managed to get 3 good grade GCSEs sat at home in the dark, and is working on the fourth, but where I really dont envy you Optimistic is the having to justify everything to school, I am so glad we re out of that loop. She did have tutors - they are not paid for by the school but by the local authority and will come in for about 5 hours but only where a child is not at school at all. I would say that your DD is making herself worse again by pushing herself, and it is a tough age to be so poorly. My DD has been through some very tough times, especially with losing all her school friends, but she has moved on from that now and is very positive. There is lots more I could say but I seem to have hijacked this thread - sorry everyone!!

Optimistic - sorry me again - just saw you said your DD's school want her attendance up - this is not on (although not uncommon). Is your GP sympathetic, if so get him to write, if not I would write to Dr Crawley and ask if she would. The worse thing you can do is push her, imo it will only make her worse.

Hi chocoholic, thanks for responding. I take your point that DD is in denial although she is only mild to moderate. Will go along with her for now if only to prove the point!!

Thanks Optimistic for directing me back onto this thread and please chocaholic don't think you've hijacked this, the more help we can give each other the better.

Our GP has sent a referral to Dr Crawley today so we will wait to see what happens. They said hopefully DD would be seen in about five weeks.

One of the options we have discussed re school is to take her out completely and then to repeat year 9. Trouble is - for a teenage girl that sort of solution seems devastating. She has a good set of friends and the thought of having to make new ones is probably quite daunting. It would certainly take the pressure off at the moment though.

Hi choc , 21again and eveyone else. God, I just don't know what to do!! All I know is that I have to respect my DD opinions and wishes. She wants to be normal and do as much school as she can. She's promised me she will assess herself if she goes in to come home before she feels too bad. Right now she is only doing 2 lessons a week. 21again - DD school say home schooling where she stays on roll and has an LEA tutor would be an answer if we limp along like this as it would enable her to keep up. I urge you to explore this before she does Y9 again. What's so special about Y9? Yes French, maths ,English, Science is spiral curriculum but others are not.Spot the teacher! My DD would be totally devastated if she was taken out of her social group and it's not an answer as it would pile on more stress. Choc - I wasn't saying that school were being awkward about her attendance but merely that they must have that at back of mind. They were brilliant with her said she was valued, bright and ready to celebrate any attendance and this is a grammar school we're talking about!I feel that CFS/ME is like wearing a cloak - mustn't lose sight of my strong-willed DD, she is still her and this damn illness is masking her!

Imeant 12 lessons a week!!!

I had glandular fever a few years ago and had cfs afterwards

Can I recommend Jo Dunbar at Botanic Medica here
She sorted me right out.

Hope she improves soon