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.......

Have Pm'ed you!

The consultant in Bath is Dr Esther Crawley. She is really good and does home visits, although as choc said a little way up (or down) its a one-off visit, then your own consultant gets in contact if needed, I think.

Dont get me started on the DLA!! DD3 can only get to the car, needs door to door transport for her to amange getting to college on a good day and often cant get around in the house, but apparently doesnt need any mobility allowance at all! She chokes when she eats or drinks, so cant be left for any length of time, but apparently that is not enough for personal care allowance. What do you have to be reduced to to actually get any help?

Thank you PA I've added you on fb. I know its pathetic really, we all just hate to see our children suffer. Its ridiculous to say that in the space of 12 months she has gone from needing highest level care and mobility to say she needs nothing. The Dr they sent out was worse than useless - he just asked her to stand up and sit down again and then asked her questions that she was too tired and confused to even answer. Its state enforced chils abuse as far as i am concerned.

I am going to see how DD is after christmas which has traditionally been a dip for her and if she is struggling I'm going to give Dr Crawley a go.

How far down the appeal process are you for DLA? Did the Dr that came out get the decision reversed?
We, too have gone from highest mobility to nothing. I have sent the appeal in and now sit and wait.

Positive not sure AYME will be able to help on this tbh.
Cuppycake sounds like things have been tough. I don't know how to find you on facebook without knowing your name ... I'm not very advanced on facebook!!!

Thanks for your support gys

That was meant to say good weekend! I'm getting worse than DD!

thanks for the hugs, its been a better few weeks, the support woman is an OT, but full of ideas and help, nothing to do with Dr Crawley or London.
DD has got a pacing diary to keep for a month to see how the energy is being used and is managing 3ish days of school a week.
We are waiting for a meeting with OT, school and ourselves this side of Christmas.

From reading through the threads, although this is horrible for DD and the family there are so many other children that are far worse and my heart goes out to you all.

Thanks for your replies chocaholic and PositiveAttitude and hello there CuppyCakeQueen (I've PM'd you about facebook btw ). I've looked into getting a referral to Bath and Dr Crawley. Apparently, according to our GP, our area does not allow Choose and Book for any paediatric services. This means there would be wrangling between the hospital in Bath and our PCT (confirmed by the secretary at the Bath clinic). Apparently there is an agreement between our PCT and Great Ormond Street Hospital on the other hand. So to save hassle, time and potential rejection we have asked for a referral to G.O.S.H. Meanwhile, we've just received a date for assessment by the local CAMHS team. Apparently where we live it is standard practice for cases of suspected CFS. Cannot see what use this will be. DD refused to engage with them last time and refuses to engage with them this time. Rather than wasting her precious energy levels getting into a battle with her, would rather conserve her energy for the GOSH assessment. Going to London (or just simply going out of the house) is going to be really tough for her not mention the stress surrounding what they may ask her, what they may expect her to do etc. Hoping local CAMHS will understand why we are not going to push their appointment with DD when I write to them to say sorry but....

Hi motherhen and all. I have to say that the OT has been by far the most help so far xx

We don't have OT. How did you get the referral Cuppycakequeen?

Mohterhen - just flying in here as I am away from home at the moment and having an interview in a few minutes. BUT just read your post. Look at the NICE guidelines for CFS/ME. I am sure they say that anyone should have a specialist referral within 6 months of diagnosis, so if you are able to start quoting that they wont be able to argue about GOSH. ALso, ask for a home visit. There is no way DD3 could have got to our local dr surgery, let alone a centre hours away from home. I am sure they will do home visits - the nature of CFS/ME means people cannot travel for appointments, so they must accommodate for that.
Also CAHMs can do home visits, too. Dont push your DD to go to the appointments that will just make her worse in the longrun. (Also, they wont push for you to have Cahms input if you are insisting on it being at home because theywont want to spend their time htat way. - this worked to get htem off our back, anyway!!! )

Good luck. I will pop back tomorrow when I am home again.

Thank you PositiveAttitude for your advice. I am writing to CAMHS to say thanks but no thanks. It is an impossible task to get DD to engage with them and I see no point in wasting her energy fighting her to do it. I will definitely be asking GOSH if they will see her at home. I hope they say yes as I am dreading the effect on her otherwise. When we took her there last year for the PVD, it took her about 3 weeks to recover from it. :( I have said to CAMHS I'm happy to take their advice and any support there is, but that DD will not and I state the reasons.

On another note, I was going through the thread reading all the old posts and saw a few mentions of the medical herbalist Jo Dunbar. I rang her and have a consultation booked for Friday. In for a penny, in for a pound. I am a great believer in the benefits of herbalism as I was cured of years of persistent cystitis by a herbalist. Not saying cystitis is anything like CFS but it might be worth a shot...

Hi guys, Motherhen, I think anything is worth trying, melatonin which is a naturall hormone was the only thing to help dd at all so far, it regualtes her sleep a little - she is a lot better than she was anyway.

I think we are just lucky to have a specialist OT for cfs/me but she only works two days a week so we dont get to see ehr very often,

Fun and games with school today - it has recently been granted academy status and they will no longer buy in DD's home tutor - a service which is free to "normal" secondary schools. DD is supposed to have significant extra support in school because she is only doing 2 hours a day but the TA support seems tro be very patchy. She sat in the support room for an hour because they said she was supposed to bring homework with her to do there - aaagggh! They have to get the homework for her from the classes that she doesnt go to. Ah well, i will go up again on monday to explain the process yet again!

Soory - rant over, i know they do their best but lucy was doing so brilliantly with her tutor, its a shame that they school wont use the specialist service in the name of funding!

Hope for a peaceful weekend for all of you, hugs, cuppycake

I understand your frustrations Cuppy. Have you asked parent partnership if there is any way around this? Surely the LA are legally bound to give your DD an broad and balanced curriculum that suits her needs. when we were fighting the education system we werent faced with the academy system, but I know how hard we had to fight to get them to listen to us?
Is there just one person that seems to understand your needs? If I found one person, I learnt to butter them up and keep them on-side and get them to fight my corner, too.

Here I was very pleased that DD3s Paed has contacted me and has agreed to do another report to support our DLA appeal. But she is away next week, so it wont be done for another couple of weeks. At least she will try for us, though. Hopefully it will have some sway.

We have had a better week this week here. DD3 is, unfortunately though, at that stage of being so tired that she is permanently grumpy and argumentative, but still has some energy to argue! (When she is worse she is grumpy but does not have the energy to argue!! ) A little stressed here today!

Have a good weekend everyone.

Big hugs PA - thats just what my DD is like - unfortunelatey she alway seems to take it out on her littel sister. I Had a lovely night out last night - took the little dd to Abbamania - she so often gets the short end of the staw because of her sister's illness so a special night out was definitely needed - it was great to be able to get out and relax for us both. Happy weekend to you all xx

Hi everyone, How are things?

HAPPY CHRISTMAS everyone!

Hello all, hope your holidays went well. We had a pretty good time and DD coped fairly well with everythign although her sleep problems are back worse than ever. She made it in to school today for a couple of hours which was great but is really grumpy now so little DD is suffering for it.

Hope you all are well and not being blown away xxx

Sleep problems have continued to get worse and DD hads missed a week of school (still on a very reduced timetable). Scool attendance officer phoned and gave me grief - when i chatted to her it turned out she was new - hadn't even been told about DD's illness. When i explained she seemed very interested and actually wanted to listen which makes a refreshing change for thta school. Went back to the GP today and he has upped her melatonin dose so hopefully we will see a response before going to se paediatrician next week. Hope you are yours are all doing well, taker care love Sally xxx

Hi Cuppy I lost the thread for a while and had to dig around for it!!

Sorry you are having issues with the school, I am so glad DD3 is out of hers, it was a nightmare. I am having a bit of a battle with college now, though because htey just do not seem to "get it". DD3 only goes in 3 mornings a week, but a few times has turned up only to find out the lesson has been cancelled. The tutor looks at me, or DD3 as if we have 2 heads when I try to explain how it takes so much effort for DD3 to get up and to college, that if the lesson is going to be cancelled we would appreciate being told so that she does not use all her energy in getting ready. She then later told DD3 that perhaps she should go to bed earlier!!!

I hope the malatonin works and sorts out a good sleep pattern. We never actually used it, but have been told it has a very good effect on some CFS/ME sufferers.

I have created a group for other mums of children with ME and Mums with ME to be able to get together and chat over some of the problems they are facing. please join if this affects you or share with anyone you think might want to be a part of it. Thanks.

www.facebook.com/groups/321981294511770/?profile_pic_upload=1&success=1

Thats brilliant. I have sent you a request. Than k you.

Brand new to mumsnet but just wondering if anybody out there with teenager suffering from m.e. and with gcse's in a few weeks?

Hi Lizzie. Sorry I didn't see your post earlier. This thread has gone rather quiet, I am afraid, but I am happy to resurrect it if necessary.

My DD3 is now 17 and has had ME for the past 3 and a half years. She was very severely affected, but is now doing better. I am happy to answer questions if you have any.

Regarding the GCSE's I do not have any experience if this as DD was not able to attend school for year 10 or 11, so we sort of missed all that pressure and hassle. Is the school understanding? Are you experiencing problems because of the pressure and expectations?