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.......

Dwardle Thats good news. I hope things get another kick in the right direction for DD.

I spoke to paed here yesterday after 6 weeks of trying to contact her and her being stuck on holiday. (Very apologetic for not getting back to me for so long and she has now given me her direct contact, which I shouldn't have really!)Anyway, she has suggested applying to our NHS trust to see if they will pay for Dr Crawley to come back again to see DD and give a revised plan.

Bad week again here. Fed up.

Katsch I would contact Phil Parker direct as your DD may be a "special" case as she is young. Go to the top and see if he can comeup with an help or advice.

PA sorry things are bad - lets hope this is a positive step to get the professionals on board and listening to get things sorted!

V good suggestion Dinamum
Positive - you do sound fed up. Good idea from your paed though.

Evening. Positive - so sorry you are having a bad week. I hope your PCT can move quickly on funding for the appointment. Sounds like a good plan. *Dwardle" - hope the LP person can help your dd keep moving forward.
We have decided not to go with LP for dd at this stage. I've done a lot of reading and thinking in the past few days, and mostly, in view of her age it doesn't seem like the right thing for her.
I had a good chat with her play therapist today who is going to talk with her about some of the things going on for her. I'm also trying to look more carefully at her activity levels and see if we can adjust things to make it work better for her.
I do find it hard - as I've got 2 children now with different, chronic, nobody knows a great deal about them, who knows when they might end - conditions, which both need different management. Some days like today i just feel a bit . Off to sleep now - tomorrow is another day.

thought I'd finally figured out how to write a name in bold, but see with Dwardle I stuffed up sorry Dwardle

sorry for killing the thread or have you all gone and started a new one somewhere else? Hope all ok.

You haven't! Have just been on another planet - sorry! Did you have a good weekend? Ours was okay but last week was challenging to say the least. DD was doing ill after her drama gcse. However, she is now doing teenage and is in her room with the laptop
Katsh - I have never managed thebold so now I am jealous
Is everyone else okay?
And now it worked!

I'm not hiding from you Katsh, honest!

Same old, same old, here. Just as I think things are going up, a bad days comes along to remind me how far we still need to go.

For those following the school saga, I have received all the notes from DDs school. I wanted to check things before she moves on to college and make sure that no "baggage" (lies) is there. Very interesting reading. In black and white that we were not believed about her illness. The one person we had 90% of our problems with, unfortunately, was the one who collated all the notes for copying. There is NOTHING throughout 100s of pages to suggest that he even knew who DD was! His name has been erradicated from everything. None of his communications are there!

Hope everyone else is doing ok.

Just received an email from the local Paed. Dr Crawley has agreed to come and see DD again to re-assess her and this should be soon.

Also told to go back to the pacing and be strict about it, which has gone down like a lead balloon!! (if the lead balloon goes down, DD has hit orbit and is flying through outer space about this suggestion!!)

But hopefully we will speak about LP, too.

That's great news positive - at least the bit about Dr Crawley coming - sorry the pacing suggestion isn't welcomed by your dd. Can I ask what your strict pacing looks like? I have gone back to moderate pacing - partly because I can't quite face the full on version myself. I have been wondering whether I should get dd seen by dr Crawley - just to have a different viewpoint from the local one.
dd a bit better today. My parents are staying and I took my Mum out to beautiful RHS gardens today whilst my Dad looked after dd. Lovely to get out for a while ( even though I was still pushing a wheelchair )

Hi Katsh, glad you had a good day yesterday. I am probably not very good at describing the pacing, but I will give it a go: "energy" use is put into 3 categories, red, orange & green. Green is when you are as relaxed as you can be without actually being asleep. ie: lying down listening to calm music. Orange is "mild" activity such as watching a favourite film that you dont have to think about because you have watched it a million times before. Red activity is any movement around the home, reading, computer use, watching something that you are interested in on TV, personal care such as a shower. You then find your "baseline", which is the state where DD can do the same amount on a good day as well as a bad day with no crash afterwards. Then you increase that level by 10% a week.

Here, when we saw Dr Crawley just over a year ago, we started on 3 hours of red activity a day, but this had to be reduced to 2.5 hours before we found her baseline properly. - when it took 20 minutes to get her downstairs in the morning and 20 minutes to bed at night, 20 minutes to have a wash and each time she went to the toilet would be 5 minutes, eating was about 15 minutes a time, it very quickly adds up and she ended up with less than 1/2 hour a day of an sort of "activity" that she could chose what to do. We split this into 3 x 10 mins, one for morning, one afternoon and one evening. Then gradually increased.

This was done alongside a sleep reduction programme. DD had been sleeping up to 21 hours a day. Apparently this was really poor quality sleep, so the more she had, the more she felt she needed. Over a 2 week period we had to reduce this drastically to 9 hours a night. This was so hard as she wasn't allowed to actually do anything that was likely to keep her awake, because it was all red energy!!!

BUT it worked really well for us. We literally counted minutes! - she would try to be as quick as possible on the toilet, just so that she was not using up her time. At this time she wasn't able to walk at all, so being lifted or crawling took a lot more time (and energy).

I hope that explains it alright for you, if not I am sure someone else will do a better job.

AYME were very good at helping us out with this, so they may be worth a call.
Dr Crawley is doing a trial programme starting in September, into the Lightning Process, so if you are seen by her afer September DD may be invited onto that trial.

brilliant description of pacing Positive ..that is it in a nutshell. My DD started off on 4 hours red at a time she could just get herself from bed to wheelchair to be pushed to the loo and then reverse to go back. She couldnt stand or walk at all...it is very, very hard but it does work. Dr Crawley would explain things to your DD in a way that she can understand and I think that is so important. Our GPs didnt do choose and book at the time but signed up specially, when we hadnt heard from the PCT after a long time. Re the Lightening Process, this thread is very "pro" and I know a lot of you have had a fantastic amount of success with it, but it is not for everyone and that everyone includes my DD. Like everything else, it works for some people and not others. CFS/ME is really an umbrella term which probably explains why, plus also the fact that some people are not in the right mindset at the time. Hope I'm not offending anyone here but I just wanted to point out that Lightening Process is not the way forward for everyone.

Thanks for that Choc.
Can I ask you something? Tell me to mind my own business, by all means!! How did you come to the decision that LP was not for your daughter?

I started off very sceptical, but have come round far more over the past year, but I am really unsure as to whether it is right to go down that route with DD. I am not against LP, I am not Pro LP, just want to do what is right for DD.

As I see it I do not think DD is a "typical" CFS/ME sufferer, and I think that is what is muddying the waters a bit for me.

Also, DH could well be without a job at the end of July so the financial implications have to be considered, especially as where we live, there is no practitioner and we would have to add on the travelling/accomodation costs, which from here, are not cheap!
I think I am a little scared it wont work and then I would have wasted all that money and effort and I know that if it didn't work DD would take it as a failure and she would probably have a set back.

Not easy to put into words how I feel about it, so sorry about rambles.

Thanks for responses. I guess the thing that is difficult to get your head around when starting proper pacing is that it is so hard to impose these limits of choice on our children - positive for your dd to get 30 mins choice a day must have been so hard for her and you. I have started today with a new resolve ( again ). When we paced properly last autumn dd did nothing for longer than 20 mins as that seemed to be her tipping point, and had a day interspersed with lots of rest. She has only being having a lunchtime rest but that is obviously not enough for her. So today it's been back to the old regime. I guess I have to really give this a good go, before trying Dr Crawley as she will tell me the same thing. I just wish I could have someone figure out her baseline for me, as I find it really hard to get there and I know it will take a few weeks. Oh for a magic wand Choc how is your dd at the moment? How is Perrins going? You may have seen from my posts that although we've looked into L.P we don't think it would be right for DD at the moment either - but I don't think anyone on this thread is offended by anyone - it's great that everyone shares their trials and errors and thoughts. I hope that things are ok with you.

x-posted with you Katsh and I meant to ask how Choc's DD was going now too.

Been a very loooooooong night! I am nearly asleep at my keyboard. Home for a "nap" this afternoon to refresh the brain!!

have you been involved in the counting Positive or just watching? I gave up, couldnt cope with sitting up all night ..at my age I need my beauty sleep!!
In answer to your question Katsh, like everyone else, I have spent a lot of time researching all the various things around and for a long time was bogged down with it - you can always find someone who a treatment has worked for and then another who it hasnt. DD was 15.5 when she was first ill and has always been very anti LP ..she is very logical and "scientificy" and not particularly convinced by LP which she has also researched. To my mind, it goes totally against all the conventional advice (although I am the first to admit that conventional does not have all the answers for CFS/ME). I cannot (and neither can DD) get my head round the fact that (if my understanding is correct) her brain has "taught" her body to overreact in this way. We went for Perrins because it has a scientific/medical background and is administered by osteopaths. However, even here I had read the book twice and wavered over the "what if it doesnt work, what about the side effects, cost etc" things, when I met someone who's daughter had improved dramatically on it and the rest is history. DD is still doing well on it .. can now manage short outings to shops, meals, had a manicure recently. Unfortunately, she has lost her group of friends and has a lot of downs because she wants to go places but doesnt have anywhere to go (iyswim). She is not yet up to going to college which would solve that one. She is doing 2 AS Maths modules in a couple of weeks and stressing herself over that too!
Sorry for going on - bet your'e sorry you asked now!! Have a good weekend everyone

Oh I wish I had been counting, but sadly just watching obsessively! Might look into how you sign up for counting for next time.

Dont be sorry about writing all that out. It is great to hear how others have worked through this. I find it really interesting and encouraging.

The friendship issue is a hard one, isnt it? DD has lost all her school friends. She has a lovely boyfriend now - met him when she was out of my sight for 15 mins shopping after Christmas!! But girls are a little on the short supply list. She can also manage short trips to shops now and the cinema and gets out of the house an average of once or twice a week. She has come a long way! She will be 16 in a few weeks time, but seems to have matured so much more because of having to deal with this. That is one positive to come out of it.

Now I am rambling,too.

Have a good weekend!!

Positive - wow so your DD just bumped into this boy and they "clicked"? That's great. It's interesting that she's lost her school friends too, I think kids that sort of age just don't "get" it, that someone their age can be so ill for so long. My DD sees a couple of girls from time to time she was at school with but neither are particularly local and one's now at uni up north. She just longs to be part of a group and I can remember how great that can be and she's missing all that. Well, better go and see how dinner's doing before it burns!

Yep, Choc, She had some money from Christmas that she desperately wanted to spend in the January sales. I drove her down to the shop and sat in the car while she went in with her friend to choose clothes. When she came out, 15 mins later, with bags she had a grin from one ear to the other and said that she had been served by a "lovely looking guy". Went from there. Just goes to show that no matter how close an eye you keep on them, sometimes it just happens! He is lovely and certainly makes her happy and has made her have somebody to be well for when she is having a bad time. Very understanding of CFS/ME aswell, as his auntie has suffered with it for years. They are very young, though so could be picking up the pieces of a broken heart at some time.

Hi to everyone - sorry I haven't been posting recently, I haven't completely gone away but other issues have taken over.

DD's chronic fatigue has not come back, she is ok on that front, but we are very concerned about her atm. Over a period of a few short weeks she has transformed from a happy normal girl into an anxious and very thin girl who doesn't want to eat, (she has never been overweight in her life and could not afford to lose weight). We are taking steps to deal with this and I am lucky to have a friend who has been down this route with her daughter and so have lots of good advice on this one. I don't want to turn this thread into one for eating disorders so I may well start a new one at some stage - I am sure there would be lots of help here on Mumsnet.

I shall keep checking in on you all and if I have any words of wisdom for you I will let you know.

I think I have aged ten years over the last two and could do with some stiff drinks and some plastic surgery!!! Still - deep breath and chin up as they say - we will all get there in the end .

21 - You poor thing and so sorry that DD is now having other problems.

Hope you get some good help for her and things become less stressful all round.

I dont mind you off loading on this thread one bit, but I am sure other mums out on the wider Mumsnet have experience and wonderful advise. I have found this thread to be a lifesaver, so I am sure others on specific problems will be the same.

sorry to hear this 21. This is a difficult sort of age for all kids, and perhaps this is a sort of reaction to the problems your DD has had with the CFS/ME ...I think I'm right in saying eating issues are often related to "control", and she didn't have that when she was ill. As Positive has said, I am sure there are other Mumsnetters who have children with this or have/had it themselves, so might be able to give you an insight. Don't be afraid to ask for help, and don't leave it if you are worried. The only good thing is I think the medical people know a bit more about eating issues than most do about CFS/ME! Don't forget to look after yourself too ...sometimes life seems to be one bad thing after another and you can't see the wood for the trees ...hopefully, you can sort this quickly, and things will improve again.

Hi everyone and bigs hugs to you 21. I am so sorry that your DD is now having eating issues. Don't despair. She will come through and so will you. Please feel you can talk to us on this thread. We know you after all and can be supportive.
Choc - please don't think you have offended anyone on this thread. I am only 'pro' LP because having done it with my daughter I personally think the science stacks up and as it worked so well for DD I just wanted to share our success in the hope that other people who didn't know of it would maybe take the risk!
PA - we too went through the 'what if it doesn't work' scenario. In the end it was 'what if it does and we are preventing our DD from getting better'

BTW as a rider I do truly believe that only we know ourselves, our set-up and our children and we all have different ideas and beliefs over what is the best way forward for them...

Have a lovely weekend all!

Thank you all for your kindness and support. Although this thread goes quiet from time to time, there is always someone around when needed and it has been a huge help to all of us.

I think the trigger here was the friendship issues that DD had earlier in the year. It made her terribly anxious and worried and although those problems have gone away now she has been left with no confidence whatsoever. Time will tell and we will have to be patient but firm with her.

Hope you all had a good weekend .

21 so sorry to hear your DD is having such a rough time ( and you too). Thinking of you all.