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.......

This article is frightening, but I thought it may help some people here.

"The Association of Young People with ME (AYME), the UK?s leading charity supporting young people with ME, claim hundreds of families already scarred by the illness live in fear that their child will be removed from their care. Chief Executive Mary-Jane Willows said they have seen a dramatic rise in calls from parents this year."

newsnetscotland.com/general/1461-parents-of-sick-children-living-in-fear

Thanks for all the input so far.
For me, I am trying to get it into perspective and try to have a life as well (not to mention give some attention to the other children too!).
In trying to plan his life at the moment, it seems to me that he is at his best from about 1pm to 5pm.
It takes him about an hour to eat, go to the loo, etc., then with a little rest to recover from the effort of that, its about 2pm.
He definately perks up then for a few more hours.
My dilemma is that school finishes at 2.30pm, so the notion of going part time isn't feasible, is it?
Also, he has been give circadan for sleep. He is on one a day, but it hasn't made him drop off or anything. There is a plan to go to 2 per night if this doesn't work. Does it usually work straight away, or does it need a few nights or whatever to start working?
Thanks.
Oh, and he was visably relieved when we told him that he didn't have to go to school if too tired.

From what I understand, it's not like a sleeping tablet - you have to follow a good go to sleep routine but it helps to improve the sleep. I would up it to 2 if not working.DD needed quite a bit of melatonin to work. Can't remember how much but it was at least twice the orig dose! If you want some more ideas about sleep let me know as this was a big issue for dd.

From what you have said, it sounds like you could really do with some advice on home tutoring. Ideas anyone? Parent Partnership? My subversive side says keep him off school and let them come and find you!!!

To be honest, it took ages for us to get everything into perspective - DH used to sort out ds at weekends as he was always off playing sport. Life was not easy but it settled into some sort of routine. This thread really helped as everyone understood.

Am pleased he reacted so well to not going into school. I am sure that accepting limitations really helped my dd. I had to learn to trust her saying how she felt. Previously, I used to jolly her along!

At the moment, dd is sat in bed with her two mates watching dvds - they are giggling madly! He WILL get better - promise!

By the way - agree with Choc and hello Optimistic - good to hear from you! How are you, Positive? Things sound like they are looking up, Katsh.Agree with all your advice - esp useful as your dd is primary age. Have a good evening.

dwardle Thanks.
Sleep has always been an issue for him, so I have always worked on this, but with little success. I am optimistic that the melatonin will help!
Seeing how relieved he was about school has made me think seriously about not sending him in for a long time.
The main problem re the school will be the delay in the doctor sending us a letter confirming his diagnosis and its impact on his school attendance. The principal will just have to take my word for it... I hate confrontations and I am dreading speaking with her.

Hello everyone...and welcome to humanoctopus.

Not got much time now but I would recommend you trying to see Dr Crawley in bath, human octopus. For the price of a cheap day return from london our visit to her achieved three big positives:

1. my DD (then 14)just breathed a huge sigh of relief when she came out that someone finally "got it". Dr Crawley made clear that she wasn't going mad and, having asked her once about her mood etc didn't keep on asking if she "was happy" in school with a cocked eyebrow and overly sympathetic expression as was the case with the GPs we saw
2. she wrote the most fantastic and detailed letter to us , the GP and to school setting out excatly how bad DD would be feeling and explaining the pacing system. Once school got this they bent over backwards to help with a reduced timetable. A few teachers don't quite understand and despite the strong recommendation that all homework be deferred to the weekend forgetto follow this through so I have to be on the ball to make sure late work is marked and that tecahers keep telling me or DD by email what is being covered in lessons she misses
3. Dr Crawley hands out charts to fill in for pacing, which really do help keep track 9 a bit like weight watchers diaries I thought - just as you sometimes don't realise what you eat unless you write it down, DD can easily do more than the 5/6 hours red activity she was to start with).

DD is a clever girl, and lives close to school so she can even come home for say one lesson and lunch. She is determined to keep up all the GCSEs she is sitting and manages by no doing games, and missing three lessons of independent thinking/PHSE etc. Plus she does only one of the sceduled two hours of History and Latin because that means she can get two complete afternoons off on Monday and Thursday.

She relapsed quite badly before Christmas with tonsilitis and the flu ( which took her ages to get over. i kept trying to get her into school for her reduced timetable until one of the teachers pointed out that lots of otherwise healthy girls were taking a week off with the fluey virus, so DD should do the same. She seemed to perk up a bit over the Christmas break and is managing OK with the first lot of GCSE modules, although the grey skin colour is back at the end of an exam day and I fear that once they are over she will have a mini crash.

Eating is our continuing problem. She just can't eat in the morning so goes without food most days until 1:30 or so, sometimes later. Any tips on what is palatable?

Good luck human octopus. And lovely to hear that everyone else who helped me last summer when i found this thread is doing better/OK

Fififi We have the same issue with ds not eating in the morning. I have crucified him with insisting that he eat before going out, making him sick into the bargain. He has been taking a tiny lunch to school with him, so not much for the rest of the day.
When I review his past 3 months, he hasn't has the best of times really.

Does Dr Crawley see children who are not in her geographical area? Sounds like she is really supportive and good at what she does.
I feel that, in many ways, we have fallen into a black hole, and need to drive this illness myself, such is the lack of professional support.
We were simply given the diagnosis, and, other than the prescription for melatonin, nothing else.
I am so glad to have found this on mumsnet. Can't imagine what I'd do without it.
Thanks everyone.

We're london, so yes she does see people outside her area. DD was able to do the journey on the train but I think she visits for people who are really laid low, though I guess you'd have to wait longer to see her. My appointment came through in about two to three months - it was September, so after picking up throuh the holidays I was almost tempted not to go but am so glad we did.

Actually looking at that timetabling, reminds me of what I wanted to say last night - this time of year (October through to February or so) is just the worst time isn't it? All the bugs going round, and a return to school in the autumn term which stretches out for months it seems to bring on bad times for CFs children. Dr Crawley remarked on it in September and warned us not to be surprised/disappointed if DD crashed back again after a better summer.

humanoctopus I am like you though, I worry so much about whatis being missed at school - not so much the work ( though that is a big part of it) but also mised opportunties for team sports (though there is no way DD could set off down a sports field at a run!) and clubs and friendships. But I've found it is fairly straightforward to catch up with lessons, even at GCSE level - an hour at home gets through much more than two at school. And since your DS is younger I would second what others have advised of maybe giving him a week or two off ( maybe more)completely ( though sticking to a routine at home of bed time and getting up) ( the relief was immense for my daughter when we agreed this - every morning had been a battle to get her into school with me shouting and her crying and wasting so much emotional energy. Then agree a staggered return to school, although i can see that is difficult for you with your DS's school hours. Dr Crawley would be able to help with that though, suggesting what to miss, how to structure the day. She is very keen too in getting the children up at a reasonable time, like 8 however tired they are and wanted me to keep DD up til later, with no sleeps in the day. Instead she has to rest ( yellow activity, or even green) and that does help and means she is able to function in the mornings at school, albeit starting a bit later wherever possible.

I do thank my lucky stars that DD goes to a school less than 10 minutes walk away - it does make it easier to take breaks at home/ go to and from school at odd times much easier. I realsie it won't be as easy for many. Ironically we chose the school because at the time I was undergoing treatment for a serious illness and in my darker moments wanted her to be at a local school with a network of mums to feed her and collect her from netball etc in case I wasn't around. I'm still here but the benefits of such a nearby school continue for her.

Lovely to hear from you Fififi.
It is quite odd reading your posts Fififi and Humanoctopus because it is bringing back so many memories of what things were like when dd was at her lowest. Yes, this time of the year is the worst. I had forgotten about the eating but I think as I left my dd in the ams, I was letting her get away with not eating. She ate when she wanted - I think I probably just tried to supply whatever she would eat! Inc very expensive smoothies. I bought her some very nice jelly multivitamins (Bassets?)
We had to get dd up in the morning - even if she was going nowhere. Just a move from bed to sofa.
And the grey face - oh yes!
Fififi - try not to worry too much about what your dd is missing - my dd was the same as yours - near school and struggling with her gcses. She was allowed to pop in at lunchtime even if she was not up to lessons (lovely,lovely school) and tho she did not do this too much, it helped. Now she is better, she has picked everything up as if she was never away - honestly - and though she is not out partying every night, she is really having a good time in 6th form and is very happy. She has also taught herself so much that she is a very independent learner, which is a great help.
So - try not to worry too much - she will get there.

Human Yes, Dr Crawley came to see us at home. From what I remember we only had to wait a very short time, maybe a few weeks. We live on the Isle of Wight and there was absolutely no way we could have got DD off the island, let alone a journey up to Bath.

Its lovely to hear that your DD is doing so well still Dwardle. (and I am still of your understanding school!!)

We are seeing Paed tomorrow for an update. Not sure what to expect.

Human yes we also had a visit from Dr Crawley at home. She travels nationwide, the only downside is it is a one off, with the idea being she will advise the local team afterwards. We never really had any follow up because of this so, if it is possible for you to get down to Bath it would probably be better. The melatonin worked immediately for my DD who previously had been unable to sleep until 2 or 3 in the morning. She has always been a good sleeper though. She was on the liquid at the time and found the dose given was actually too much and ended up taking 1 ml which, unbelievably, was just right. She is now taking the tablets and I think they are prolonged release so, probably not so big a hit in one go. Please try not to worry about the education side of things, your DS has a long time to catch up in.

Positive - how was the paed?

Hi Dwardle, thanks for asking, sorry to not get back sooner. Paed appointment went well. She is lovely!! It was good to look back and see how far we have come, rather than looking at all the negatives. She was adamant that DD3 should not increase her time at college at the moment. I agree with that. DD is keeping up with the work, just doing half the time, but the college are being less than enthusiastic and darned annoying!! - what is it with the education system here, I am just about fed up with them all.
To be honest, if DD came to me and said she wanted to give up on college and do nothing I would say, "fine, stop today!" . In reality I am encouraging her to just get through the next few months and then we will tackle what is going to happen next year. She wants to go on to a hair and beauty course, but her tutor says she wont be able to unless she increases her times now. My argument is that she doubled her time from last year in September and has had very little sickness, so I believe she can do another step in September and would want her to be given a chance at least.

I hope everyone else is doing ok. Spring is just around the corner, so chin up... you'll get there!

Fififi - my son has a drink in the morning prescribed by the dietitian as he cannot stomach food until lunchtime -it's an enriched milk drink. This has kept him going for over 2 years and luckily he has continued to grow as they were concerned at one point he would not have the energy to go through the usual growth spurts of his age.

Hi - I expect you're all still out there somewhere. Just wanted to post that my dd went back to school today after 15 mths at home She's going to go in every day for 90 mins. Pretty scared today but she managed it and hopefully the rest of the week will go ok. We know she's still got quite a way to go but this is a big step in the right direction. Hope the silence on this thread means that things are going well for your children.

Katsh that's wonderful news. Really pleased for her and you.

Here, DD not too bad, although a serious dip at the beginning of last week. I have been able to organise a taster session in a local hair salon for her this week. She had been hoping to get on a hair and beauty course for next year, but I am beginning to hope that we can cut ties with the college and she may be able to do more of an apprenticeship type thing with this salon. I will have to ask some questions. Just fed up with banging my head against the education brick wall!!!

Hello .. I'm still here. Katsh that's brilliant news. Hope it's going well.
Positive that sounds interesting, hope it goes well. I have heard that proper experience rather than college courses is the way to go for things like hair and beauty. If they are sympathetic, your DD will be learning real skills. Hope it works out. Hope you're OK too.
We are plodding along. DD has had gastritis, followed by a chest infection, followed by a migraine. In between times, she's been doing OK.

Hi - Great news Katsh. That sounds positive too, Positive!
DD had her first driving lesson today! She has her bad days but is doing pretty well really. Hi Choc - hope Spring brings better health for your dd.
Am so glad it is Friday. Here is a clue to what is important: !!

Can I join you Dwardle? They must be new - either that or I've never noticed them before. How did the driving go? My DD wants to take lessons once she's finished her A2 Maths in June. Personally, I'm not sure she'll manage it but I think I have to let her try. Have a good weekend everyone.

Hello everyone. Positive how did your dd get on at the salon? That sounds like it could be a good way forward as the college sound as if they are still not getting it! Choc - I hope that your dd is picking up a bit now. Dwardle - I'm glad your dd is doing better and I hope the bad days are few and far between.
Well I feel I can breathe a slight sigh of relief having week 1 of school over! My little dd has done so well this week despite her anxiety. She has been in every day from 8.45 - 10.20 and she has loved it . I was thinking it could be like when she stopped school when every visit made her feel worse and she spent the whole time feeling muddled and sick, but it's not been like that at all. She loves being back with her class and has already been awarded a point in French for answering a question and received a teacher's certificate for " Coming to school for a whole week" today! She has been a bit more tired, but not in a scary way. Hurray Hurray !! I've been using the as an anxiety reliever but maybe tonight it should be a celebratory drink I have ! I hope you all have a good weekend.

Welcome back everyone!! I have missed you all .

Hope the driving lesson went well Dwardle. DD2 passed her test first time this week . DD1 has given up after 3 attempts .

Lovely to hear all the positive improvements here. Long may they last.

DD3 had a fantastic time in the hair salon. She absolutely loved it. It did tire her, but she says it was worth it! It has become obvious that she will not be able to do an apprenticeship as she would need to be on her feet 10 hours a day. No way could she manage that!! But she has been told that the college will take her definitely - the hair salon manager knows the college tutor, so thats good.

Hope you all have a good weekend.

My son was discharged from physio this week after 4 and a half years - we have another year where I can just ring straight for an appointment but hopefully we wont need to - my DS is now averaging 4 days a week at school - he has had a few evening school meetings he has had to attend which have meant he has missed the next day in school, but, slowly slowly we seem to be getting there....

Hey Bobala, thats a good step forward. 4 days a week is really good at school too. The light is growing at the end of the tunnel!!

Hi Bobala - that's great, it's always lovely to hear positive news on this thread. Have you found the physio helpful? I have looked at physios several times but not managed to find anyone with any experience of ME so not taken it any further.

It has been the best and only thing that has worked - we got a referral through the specialist and I cannot praise her highly enough - and my DS really responded well to her - where abouts are you?

we're in Hertfordshire. DD is too old for children's services now but we haven't actually had any help since Dr Crawley visited her at home when she was bedbound ...would be coming up for 3 years ago.