Support thread for mums caring for child/teenager with CFS/ME. Part 2.

[PositiveAttitude]

Nice sparkley new thread for us!

This is the sanity thread for those with DCs suffering from CFS/ME.

"Old" members include:

PositiveAttitude - Me!
Dwardle Optimisticmumma twentyoneagain Chocaholic73 Katsh
and Dinamum

I was going to do a round up to introduce ourselves to any new people that wanted to join, but the old thread won't let me scroll back beyond January, so not much good and if I do it off the top of my head I will get it all wrong...
SO just jump in and keep the support and sanity flowing!

Come and rant and rave, get support and advice from those who have been there before you, but most of all come and share positive steps forward, no matter how small and insignificant to people who don't understand. Lets celebrate those small steps together.

I declare thread part 2 now open.......

Nice to hear from you optimistic. Recovery stories always welcome . I'm glad that your dd is well now. DD is picking up a little, but we've been here before and it will just take some serious pacing to get her improved. Cuppycake - I'm sorry to hear that you and your dd have been unwell. I hope that you feel better soon. I'm glad pacing and melatonin have helped. They are what we use, and I guess the thing is that I now know that they do give dd improvement, so even when she's knocked back by flu or something we can just pick up the pacing again, and in time she will improve. I'll be interested to hear how you get on with the spirulina! Isn't it wet and gloomy today?

Hi. I would like to join this thread!
My ds has just been diagnosed with CFS and I am looking for ideas.
Firstly, did you all believe the doctor when he/she delivered the diagnosis? Having been investigated for a million complaints by a paediatrician, who never mentioned CFS, it seemed that as she couldn't think of what was causing all ds's problems, so its probably CFS.
To those using melatonin - did it work? We have the prescription and will fill it today, but we are apprehensive - any tips or thoughts?
Finally (for now) our ds finds school exhausting, and the paediatrician wasn't helpful about it, so I am wondering what to do. He loves the social side, but it is so sad to see him so tired after a day at school. I am thinking of part time school or temporary home schooling. What do you think?
Thanks so much if you've got this far!
Head spinning, sorry for the rant.

Hello Humanoctopus and welcome.

I did believe the Paed when she diagnosed my DD because she had been very thorough about ruling everything else out and I really trusted her.
Never used Melatonin here, but others on the thread have, so I hope they will drop in and talk about that with you.

How old is your DS?

As for the school issue, I struggled with this issue for months and really tried to cling on to her going to school for some lessons, b ut in the end she just had to stop, no choice at all. - DD was year 10 at this point. Once we had made that decision the relief was HUGE!! I kick myself now for not taking her out sooner. You could go for a reduced timetable for starters and see how it works out. By taking a step back now your DS may start to improve. If he keeps doing too much and getting too tired, he will only be getting worse.

There IS light at the end of the tunnel. Your DS WILL get better, but it could just take some time.
Can I suggest you ask for a specialist referral. I had Dr Esther Crawley come and visit us, from Bath, but there is also a team at GOSH.

Keep asking questions, we will help you.

Hellooooo everyone else!!
Life has been a bit of a drudge since I am now back at work after nearly 3 months off. Lots of admin mess to sort out and I am getting really tired. Lots of sympathy for DD after feeling so rubbish for so long, and she was so much worse for soooooo much longer! ANyway, I am on the mend now, so looking forward.

DD is struggling at college, her tutor is driving me insane as she just does not "get it". She has tried to increase her time, but DD can still only just about manage the 6 hours a week, on a good week! GGGgrrrrr! Yesterday DD was expected to go on a walk through the forest!!! We havent done anything like that for 3 years!! DD was told that if she could not do this activity she would have to be "failed" I have had to step in and put my foot down and yet again try to explain, but it is loike banging my head against a brick wall. Tutor seems to have the impression she is well and should just try harder, until she collapsed last week and had to be collected! DD has a bad chesty cold at the moment, so thats not helping, either.
Enough whinging from me, How are you all doing?
Massive waves to everyone.

Hello and welcome Humanoctopus. Hi Positive.

Humanoctopus - I'm glad you've found us. In answer to your questions - I know what you mean about wondering about the diagnosis. I certainly found it hard as it's such an nebulous condition, but I do believe the Dr was right, and it's subsequently was confirmed by Dr Crawley who is worth seeing. It is a diagnosis reached by excluding other things but if you google the NICE clinical guidelines for diagnosis of CFS / ME, it comes up with a very clear set of symptoms they are looking for. In our case dd fitted the diagnosis. Might be worth a look to confirm it in your own mind.

Melatonin we use and it is wonderful . No side effects and more sleep, which has helped enormously.

School - dd is only 8, but stopped school after 6 mths, and like positive, it was the best decision. It was made for us by the doctors. She now has a tutor at home every day and she has finally turned a corner and I think will probably return to school part time later this term.

Do tell us more about your ds. How is he ( how are you) feeling about the diagnosis?
Do ask any and all questions here. This thread was my main source of info and advice when my dd was diagnosed.

Positive - sorry you are feeling so tired, but I'm really glad that you are on the mend. It must be incredibly frustrating dealing with that tutor. Your dd is doing so well to be maintaining that course - I hope she gets rid of her chesty cough soon and keeps going.

Things here are looking up. DD has recovered from the flu remarkably well. She is having tutoring daily for almost an hour, and has started to do homework as well!!!! Several people have seen her in the past week, who hadn't seen her for a long time, and they think she's looking remarkably improved. She's now more like a well child with limited energy, than a sick child. I can't quite believe I'm writing this .

Hi again and thanks for taking the time to reply.
What I am concerned about at present is that other than giving us a diagnosis and a prescription for melatonin, and appointment for six months time, that's it.
I feel a bit lost and would love some guidence/direction.
School is a major headache, so I would love the doctor to recommend a course of action for him, failing that , I think that we will just have to use others example, and just pull him now. He is at home today, too tired to move. I did say to his teacher that we may have to take some time off, she was hugely alarmed and said that she couldn't see how that was a good idea, at all.
Its great to read that he will get better. I feel that his whold life now revolves around being unwell. I hate that the teachers sometimes think he isn't trying hard enough.
I am worried that they may not go for a reduced day (and without the doctor getting involved, then I am not sure what to do).

HI humanoctopus! Yup that's just about it and you were lucky to get the melatonin straight away!! I ended up bursting into tears on my doctor and memorably saying to him 'What would you do if this was your daughter?' which made him sit up to say the least!!
Please let us know how old your son is - it makes a big difference to the advice about schooling in my opinion. I am a primary teacher too so I can reassure you if he is still in that age group.
My daughter is now totally recovered from ME/CFS and has been for 2 years in March so there is light...
Please feel free to come on here and write your darkest thoughts - we've all done it and it has been a massive help!
Lastly it is useful to look at this thread and the last one that became full up as they are a great resource.
Good luck and big hugs to you and your son.

Can anyone link the last thread for humanoctopus for me? I'm rubbish!!

here you go to the old thread

Hi again.

optimisticmumma My ds is 11 years old. He is a fine, big, strong looking boy with a great attitude and always tries hard to do his best.
That may be his downfall, in that he doesn't give up, even when really tired, so he ends up a wreck by about 2.30.
He did a bit of reading today on the GOSH website and feels that its description of CFS is exactly him.
Our local pharmacy will have to special order the melatonin (I didn't know it was so difficult to come by). His sleep is dreadful, he seems to thrash about alot, and always wakes more tired looking than the night before (if that makes sense!).
I maybe a little parnoid at this stage, but I think the teacher believes me to be an overprotective mum and is quite 'cool'about his health whenever we discuss him. Now with a diagnosis, maybe things should improve, or not? Any ideas on how to approach the school?
By the way, his dad is a teacher and is a house husband.

Is he at primary still? I think most teachers are totally ignorant of ME/CFS. I remember my DD being told by her Deputy Head in Year 8 that if she made school every morning she would get a merit as if she was about 6!!!! I explained and kept explaining that the thing she wanted more than anything was to come to school and be a normal kid!! In the end I printed off the AYME website the children's descriptions of what it felt like to have CFS and that shut her up!!
As far a approaching school is concerned it depends if he is in his last year of primary or first year of secondary (sorry to be pedantic about this) but anyway make a formal appointment with the head and his teacher if poss and both go along with the diagnosis and the print offs I suggested. You need to try to explain that he wants to come in but that he physically can't at the moment.
How do you think this all started?
By the way Dr Crawley who is the adolescent expert on CFS in Bath says you will NEVER get a lazy child with CFS. It's all about them pushing themselves, trying so hard, not fully recovering before pushing again. I've heard it time and time again.
Hope this helps...

He is in his second last year of primary.
He is completely the opposite of lazy, so your statement re Dr Crawley is so accurate for him.
I will make a formal appointment and try to get the school side organised (I wish I could relax about schooling, I get very uptight about them doing well).
He has dyspraxia as well and it took the school a whole academic year to start giving him the resources he had been granted. So they have a history of being a bit on the slow side with pupil support. I am not very confident of their support on this issue and I am afraid that they will make this harder.

Well we all want the best for our children Humanoctopus but if it's of any comfort my DD is at a grammar and missed 2 years of schooling effectively, she was down to 2 lessons a week. This has not had a massive knock- on effect on her ability - she is doing GCSEs this year and has only struggled with French due to lack of teaching.
I think you need to look at how your son could go part-time. Something that he could do even on his worst day. My biggest concern would be the lack of social interaction if he is at home all the time. Don't forget January is the worst month and he probably will pick up a bit in the Spring. At Primary school the teacher should be able to give you a plan of work so that your DH can do bits at home with him.
Can you get a letter from your GP with the diagnosis written down so that school don't get uptight about his absences? That always helped us. Don't fear the EWO. If a child is ill they are ill!!! It's just that Primaries are focussed on their absences as it affects Ofsted so you need paperwork!!!

I rang today to ask the paediatrician for a letter. Its a very small school, and dropping in to collect a child for a dental appointment, for example, is hugely disruptive (we lived somewhere else before and they went to bigger school, it never seemed to be as conspicuous being in and out).
What I am trying to say, is that I am not sure how feasible a part-time attendance would work.
I am feeling hugely bogged down by this, maybe I am getting the school thing out of preportion?

Possibly but it is obviously a big part of his life at the moment!! I teach in a school with 70 children in total and I think a small school should be able to accommodate you much better in so many ways. You need to think up a feasible plan. Could he try to go in each day from break until lunch? That way the school know where they stand. Obviously they have to be aware that, that may not happen if he is too poorly. Don't forget that your son is entitled to be educated. I think (you will have to check) that if he needs to be home tutored the school have to pay (albeit a couple of hours a week)That is certainly so at secondary. A lot of paperwork has to be completed before that happens. I think your school are unlikely to have come across this before and need educating too.
Of course you are feeling bogged down. If someone could tell you when it's going to end it'd be OK wouldn't it? Please don't worry about your son somehow not achieving - he will in the end.

Can I ask how bad it gets?
I often have to help him to get up from the sofa, or wait while he spends 10minutes trying to get up.
Most nights he has difficulty climbing the stairs.
His head seems like its too heavy and he supports it on his should or leans it on the edge of the laptop, or whatever.
He often goes hungry until he has the energy to eat or drink.
Is the above common?

Go back to your GP too and get him/her to refer you to a paed who knows about CFS and can give you practical advice. We pushed and pushed and eventually went to GOSH but you need a referral from another Paed first and they always want a blood test ruling out coeliac disease first. Get a coeliac test if you haven't already to rule that out.
Sorry if my posts are sounding bossy!! Just keep remembering things....
Off to bed now but will check the thread in the morning....

Please keep the bossy bits coming. I am a bit overwhelmed and am loving having so many suggestions.
I must do research and see if there is a CFS specialist or anyone with expertise. His current paed is highly regarded, but is a neurologist, so I don't know if that's enough.
I will organise the coeliac test.
Thanks again.

Sorry we crossed posts..
How bad does it get? Well that is like asking how long's a piece of string!! It's different for different people.
I wouldn't worry about that for now because it's like looking into a big,dark hole. Just focus on where he is now.
All you describe is common to many on this thread...
Keep looking forward and have a plan. That's my best advice. Whenever I felt desperate I had to have a plan of action, it kept me sane along with the thread.!
I'm sure all the others will be along tomorrow when they see all this activity and offer you other bits of advice.

Don't worry about how bad things can get, no matter how bad things get they will improve, too.

You do need to reach the bottom point and get a "baseline" of activity. If you look back at the previous thread there is a lot of discussion about activities and how the most innocuous things actually take a lot of energy. I think this is also explained on the GOSH website, IIRC. Once you have achieved a baseline your DS will then not get any worse, but will start on the road to recovery. The baseline is different for everyone, but it is where DS can do the same level of activity every day and not have good and bad days. The difficulty is getting him to not do too much on the "good" days.
Certainly have a look at the AYME website, too and search "pacing". They also have a fantastic helpline where they answer all manner of questions and were my lifesaver for a long time (and this thread!).

Keep the questions coming, we will do all we can to help. We have all been where you are now, so we do understand. How old is your DS?

Humanoctopus, I can identify with the feelings you are having at the moment. Our Paed did exactly the same thing re. diagnosis and sent us off. I cried for about 4 days, didn't sleep, didn't eat, didn't know what to do. School were equally unreceptive.

I would suggest:

Take time out of school for the rest of the week - just as you would do in "normal" circumstances if you had a child who wasn't able to move and had no energy.

Read the old threads. They took me a long time to read, but I learned so much ( it's what I did through my sleepless nights!)

Contact AYME - there is so much helpful info.
Also the Royal National Hospital for rheumatic diseases CFS pages. That's where Dr Crawley is, and their website has a lot of really useful info inlcuding activity diaries etc. Pacing is well explained on the AYME site - and will help you understand what is meant by baseline. It took me ages to work that out.

Start the melatonin - what dosage have you been given? My dd is yr 4 ( almost 9. v. small) and she takes 3mg melatonin and 4mg circadin (slow release melatonin) and that just about keeps her asleep for enough hours.

Eating and drinking - we've had the help of a dietitian as my dd lost a lot of weight initially. Little and often is the key. Just try to find what he thinks he can manage and even if it's only a few mouthfuls at a time, persevere. ~We also used paediatric supplement drinks which were given on prescription.

We waited over a year to see Dr Crawley and I wish we'd gone to her as soon as we could. Although we had a paediatrician and nurse specialist my GP was v. happy to refer us to Dr Crawley. GOSH don't see pre-teenage I think so Dr Crawley was the only person we could find who saw primary age. It's not a problem if you're out of area for her, and as someone else has said if your ds is too sick to travel she will come to you for assessment.

Don't underestimate the exhausting nature of ordinary activity for your ds. For my dd, getting dressed, eating, car journeys, being around other people, noise , light etc were all v. difficult, and I took quite a while to realise / accept that.

I've got to go, but hope these things help. I'm sorry you too are going through this. I think it can be v. hard with primary age, as it's so uncommon. we've battled with schools so I can tell you more about that later. I'd be happy to talk but I don't know how we go about giving numbers without posting them. What area of the country are you in?

Hello All and welcome human octopus. I can only agree with what everyone else has said - there is some really sound advice. It is very easy to get bogged down regarding education but the crucial thing is pacing. If your DS does too much (which it sounds as if he is doing) he is "boom and busting" ie. too much followed by crashing. There is lots of advice on the AYME website regarding pacing and other things. I really would recommend you ring the AYME helpline - they have a wealth of experience on this sort of thing and will be able to talk it through with you. Schools in general know very little about ME but some are more willing to learn than others. I am fairly certain that the right to a few hours home tutoring is for all children who are unable to attend school, not just secondary. The thing is by pulling your DS back a bit now, you stand a better chance of him successfully improving at a level he can maintain. Definitely recommend Dr Crawley, she is fantastic and will advise on pacing in detail. You can book her through Choose and Book as long as your GP agrees, no need to go through the PCT anymore. Melatonin is not licensed in this country (apart from in tablet form very recently for the over 55s). Special forms have to be filled in for it. Having said that it has a very good safety record in the US, my daughter has been on it for a long time now and it has made so much difference. Hope this helps but do ask whataever you need to. Where abouts in the country are you?

Just to add on the home tutor topic - if your child misses 15 days of school ( presumably consecutive) the L.A. has an obligation to provide up to 5 hours per week of home support. The Education Welfare Officer is usually the person who triggers this as they query the attendance figures. DD stopped school totally in November ( having had partial attendance from July) and she started to get home support from March, following a meeting with the EWO and school etc in January.

Hey there, sorry to thread-crash. There's someone new to MN posting here about having been some years ago accused of having Munchausens by Proxy.

Don't know if anyone here has had similar experiences or can offer support; I know Munchausens by Proxy used to be a fave among some ME/CFS "specialists".

I'm an adult ME sufferer btw - hi!

Hello Everyone
So good to see everyone - and welcome Human Octopus.
Brilliant advice here - of course- and I would totally agree. Here are a few thoughts and links to my experiences:-
My dd is 17, had CFS for 2 years and has been fully better since the summer. She was never as bad as some of the dcs on this thread but dropped down to hardly any school. She is now doing a fulltime AS course, is a prefect(!) and is great! So yes - your ds WILL get better but it takes time, tears and patience. I also believe that she has come through this and come out of it as a stronger person with great resilience. Not all bad then! Also, I learned loads and think my parenting has improved
DD had melatonin - it is fine and is actually something to do with the natural sleep hormone. DD experimented a bit until she got the dosage right - the doctor told her to- and she said it did help.
My dd's paed actually came to school and met her teachers - that was enormously helpful and we dropped loads of school straight away.I also did lots of reading and gave them GOSH factsheets! I am a Primary Head and I would say DO NOT worry too much about school - health is much more important and the rest will follow. If you look back over the threads, you will see tales of other children who have gone on to great things. My dd is one! She is researching which uni she is going to go to.
You have nothing to fear from EWOs - but DO keep a file of all your letters. Honestly - they have far worse things to deal with on a daily basis!
Paed also did us a CAMHS referral - which was quite useful.DD was having major panic problems - partially caused by me trying to make her go to school . The counsellor said 'why would she want to be off school if she felt okay' Obvious really - so I stopped pushing her and she went if she could.That really helped.Paed was running a CFS clinic which also had psychologist and physio attached. Pacing was important, gentle exercise if possible and looking at the whole child were stressed.They were so KIND - it made us feel that we were not alone. You are not alone either.

Re school, I would arm yourself and go to see the Head.Tell them that ds will be cutting back - and ask how best they could sort that. Pick the times that suit your ds, NOT the school! If they are not helpful, let us know and we will plan next steps! Katsh is very experienced on this.Each LA is a bit different so AYME may be your best bet for advice.

All the things you describe sound very familiar - it sounds like he is doing too much!

Hope I also do not sound too bossy. It is good to hear from everyone. Glad you are on the up, Positive, but dd's tutor needs strangling!

Positive meant to say when I posted yesterday (but am clearly losing any brainpower I have left!)- glad you are doing OK, keep looking after yourself and don't over do it. Also really cross about your DD's tutor, clearly has no understanding of the situation.