CFS Getting Worse? Advice Please!

[humanoctopus]

Hi. Lots of help here before on the CFS, so first port of call again this time!

My ds has CFS, seemed to be getting more energy for about a month, feeling up to an hour here and there at school, going outdoors for tiny walks, etc.

All of a sudden, for the past week, he seems more tired than ever. He can sleep for 16 hours, get up, have a drink, then nap again. Its come as a shock to me that he is so incredibly tired, suddenly, iykwim?

Is this an experience that anyone else has had with their children?

Is more of this to be expected, or should he be getting better?

Any advice greatly appreciated.

I am upset as I thought that I could see a light at the end of the tunnel, but am rattled that this horrible thing will last, and last....

Hi Humanoctopus, I think we have "met" on the other CFS/ME in children thread before.

First of all, I know its tough, but things will get better. If your DS has improved and has just taken a "dip" again, from our experience, he should be able to get back on track fairly quickly. It may take a few weeks and you should manage his energy levels from now and gradually build up again, as I am sure you have been doing. Its really good that he has been able to do so much recently, maybe he will just have a few days of "bleugh" then pick right back up again.

DD3 has had CFS/ME since June 2008 and spent a year totally housebound annd she has gradually built up her energy levels and is improving well, managing a course at the college this year of 6 -10 hours a week, (depending on how she feels) which was way more than we would have thought possible when she was just about managing 2 hours a week up until July last year. As she has improved, we have had our set-backs and I always fear the worst, that we will go back to her being unable to do anything for herself (literally), but her dips have been short lived and she has bounced back again.

I would advice not letting him sleep too much, though. DD was sleeping 22 hours a day at one time and we were told by Dr Crawley that it was really poor quality sleep and she needed to sleep just 9 hours a night and no more. It really did work. We were sceptical and it was hard work, but that was the turning point for DD to start her slow improvements. (not easy to keep a grumpy teenage girl awake when all she wants to do is sleep!) Your DS could be slipping into having this poor quality sleep, which wont help his recovery.

HTH, I a m here if you want to "talk". I do understand the frustration.

PositiveAttitude Thanks.

My gut feeling is that all that sleep cannot be a good thing, don't know why, just feel that it is almost 'feeding' the problem. And then what about food and drink when sleeping so long. He has been so dehydrated at times when he wakes, but too tired to do anything about it. I will make a plan to cut back a bit on the sleep and try to get it down to maybe 12 hours (can't imagine him on 9 hours!).

He was on melatonin for a while, then we changed doctors, who advised against taking it, so he doesn't take it now. It could be a coincidence, but maybe not having melatonin is leading to poor quality sleep, therefore he needs more sleep?? Any thoughts?

Thanks so much again.

We never used Melatonin, but I have always heard good things about it. When did he stop taking it? If that had been helping him regulate his sleeping it may need to be started again to get back into a good sleep routine, then perhaps reduce it slowly over a period of time. If the timing coincides I would go back to the Dr and persuade him to reconsider.
Good luck, keep posting.

Hi Human Octopus - I would agree with everything Positive has said ("waves" to Positive). Sorry your DS is having a bit of a blip but hopefully it will be shortlived. My DD who also saw Dr Crawley when she she was housebound was told too much sleep is a really bad thing. I can't remember how old your DS is but I think you need to get him back into a regular sleep routine asap. So far as everything else is concerned it sounds as if he needs to take things very easy for a while but again you are talking about at a level he can manage without it affecting him badly - remember too that when they are really poorly hours and hours of computer or TV counts as "red" activity ie high energy activity, although it is very very hard to convince them of that. Hope he picks up soon.

Hi Choc, nice to "see" you.

Hi again.

My ds is 11.

I am resolved to limiting his sleep time to about 12 hours from tonight.

I did try today to stop him from napping, but he went mental when I woke him (new experience for us here as he is usually a sweetie pie).

Had a reasonable chat with him about getting into a healthier sleep routine and he cried buckets, saying that he is so tired.

Any tips for keeping them awake? I bought the next book in his series that he is reading, usually enough to keep him going, but he put it under his head and went to sleep! We also limit laptop use, and when his time slot was brought forward, still no joy (usually when this happens, he is delighted).

What does 'red' activity mean?

I have googled this, but cannot make sense of it. We are not in the Dr Crawley catchment, and are not getting any significant input, so continue to struggle.

Thanks.

I will try to explain the activity levels:

RED activity is where the brain is working the hardest. In CFS/ME this is not just physical activity. Its computer use, reading books (!!), watching any television that involves "thinking", such as a programme he really wants to watch, eating, personal care, craft activities. Basically, anything you would get DS to do to keep him awake. (which makes it so incredibly hard!)

AMBER activity is flicking through magazines that you dont have any interest in, watching programmes you dont really have any interest in,

GREEN activity is where DS would be awake, but totally relaxed, such as listening to quiet relaxing music.

I will explain what we did, so that you get an idea. Dr Crawley explained all this to us, but it was now 2 years ago, so I am a little rusty! DD3 was only allowed to have 2 hours a day "red" activity to start with, broken up into 20 minute "slots". When you think that getting up, dressed and downstairs would take at least one of these "slots", then each meal-time, another slot, she was really restricted. We learnt fairly early on that we needed a time table and we needed to stick to it with army-like precision. Her worse time was of an evening, but for the last hour before bedtime, no red acitvity is allowed, so we "saved" some time to finish just before her last hour IYSWIM.

Amber activity then made up more of the time. I cant remember how much now, but most of the day was made up with watching rubbish on TV. (she was 14 and watching winnie the pooh and mindless trash!- she started watching some snooker, which she started off thinking was really boring, but she soon became interested in the rules and who was going to win, so that was then moved up to a "red" activity, much to her annoyance. She was able to sort her bead-making stuff out on amber activity, but making her jewellery was "red".

Green activity had to be done about 3 times a day for about 30 minutes, but without her falling asleep.

HARD HARD HARD!! Sorry, not very encouraging, but I have to say that we did this whole-heartedly and really did not cheat. It was really difficult and I sooooo wanted to give up. We were told to do this at the same time as getting her from 20+ hours sleep to 9, over a 2 week period. DH and I did out a routine, minute by minute for the 2 weeks and rigidly stuck with it. After 10 days I wanted to scream, rant and phone Dr Crawley up and tell her exactly what I thought of her crap schemes and how let down we felt. Day 14, DD slept 9 hours, she was a different girl and things really picked up from there.
Where you DS has already improved once already you may well find that he just needs less time to get back to where he was before this last dip.

On the subject of Dr Crawley, we are also well outside her area. But she travels around the country to see people. You should have had a specialist consultant referral done by now. (I believe it is within 6 months of diagnosis) It is in the NICE guidelines, that all GPs and hospital Drs have to conform to. There is information on the AYME website. It would be worth reading the NICE guidelines and going to see your GP armed with a plan that you wnat him to implement, using these. Have you been in contact with AYME? These people were my lifeline for years!! They are brilliant and know all the answers, or if they dont know the answer they find out and get back to you. They really were fantastic.

Sorry for long post, but I hope at least you get an idea what I meant. Please come back and ask questions, I hope I havent put you off!!!!

Just never forget that he will not always be like this. Its awful now, but he has every chance to get back to a normal life and back to being your energetic, fun-loving DS.

ditto everything Positive has said - you should be able to get Dr Crawley on Choose and Book. Our GP wasn't on it at the time we were trying to get to see her. He had written to the PCT to try to get approval but had heard nothing. In the end, he joined up specially for our referral. Once you have a number it is very straight forward and it is just a question of phoning or going online and then her secretary phones to arrange an appointment.