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.......

Great news Katsch. Those sound like big steps for your little girl! Hope you don't have to wait too long for Dr Crawley - such a lovely person - my DD saw her in the first year of her illness...
21again - let us know how your DD is doing??
Big wave to everyone else - waaay past my bedtime!
Nightx

Evening - just wanted to update ( while I am feeling positive) that dd attended part of her school sports today ( as a spectator) and played with some of her friends during a picnic lunch !!!! Although a little grumpy tonight she actually wasn't too tired this afternoon. We have an appointment with Dr Crawley in July - they called today to offer it. It's much sooner that I'd expected so we are really pleased. Hope everyone else is ok.

That's great news Katsch

Katsh
Everyone else ok?

Hello - hope you are all still doing ok. How have all the girls doing exams managed? I am cautiously optimistic here. Dd has been into school twice each week for the past two weeks. Her learning mentor has taken her in and it has all gone well. SHe has been playing a lot more, and I really think I may have seen some pink in her cheeks for the past two days despite having had late nights due to the heat. Just as well really as I need my energy to worry about my dd1 who absconded from school yesterday ( aged 10). It would be good to hear how you and your dds dss are.

At the risk of sounding too positive, dd is great!She is just normal!
So good to hear your news about dd. Am intrigued about dd1. Is she an imp or has something happened? - sorry just being nosey - don't feel you have to answer!

DD is ok. We still have work to do but we are definitely getting there and the weight is going on.

Dwardle - so pleased your DD is well .

Katsh - hope everything is ok.

Hi to everyone else.

Hi
21again- a few weeks on, are you pleased you did LP? am asking cos my nephew has CFS -and I think he would benefit from LP but feel I am a bit biased

Dwardle - really pleased your dd is so well. 21 - I'm glad that things are ok and dd is gaining weight. As to my dd1, she is not an imp ( well not at school anyway ) so walking out was quite a big statement. She cannot say why she did it, but I think the underlying reason was utter boredom. She's a v. bright girl and having had to cope with her sister's illness and her own neurological mobility problems in this past year, she really can't see the point of sitting in a room, where no-one seems to care whether or not she does the work, or gets it right. Her teachers take the view that as she's at the top of the class they must be teaching her well, but she's really not engaged at all. We are now concerned that having left once she could do it again ( even though she says she won't), and it indicates to us a deep level of unhappiness/ discontent. I've spent this morning at another school, and despite a meeting with the head and a discussion which I thought was helpful, he's come back to me today saying - she better not do it again, and some teachers just don't know how to teach able children. I know some of you teach/ isn't someone a head? I'd love your thoughts if you've got any on the subject . just to make you laugh - I think dd2's recovery continued - today I wondered what the funny noise went - I looked and she was hoovering the stairs !!!!!

sorry about previous post name - I'm rubbish at the name change thing !!!

Hi Katsh
Interesting!
I really laughed at the idea of your dd2 hoovering the stairs!
Questions (sorry - am very nosey and a Primary Head!) - what year is yr dd1? Did the Head say some teachers don't know how to teach bright children or was that you?
Were you looking at another school for her?
I agree about your concerns and think it is quite worrying. Is she on her own being bright or is there a group of bright children? What is school's ofsted like and how do their SATs results usually look? esp % of L5s? (can find that via bbc news website - go to education and follow primary league table links)
Really understand this - ds HATED primary school - said he just wished they would teach him something he didn't already know. High school much better.

Hi all,

So good to hear such positive news from everyone.

We have just returned from a week in Greece. DH was best man at a friend's wedding so we extended it and had a bit of a holiday too. DD3 has coped really well. She did so much more than we expected. She's struggled through the 14 hour travelling and is very pale and lathargic today, but so am I!!

I found out the day before we went away that DD3's new child disability team worker is the lady that ran off with my DSis's husband, leaving her with 4 DCs! Not sure how to handle this now. I had wanted to keep them on board to make it easier to get some help if she needs it on her college course in September, but now I just want to tell them to leave us alone. I certainly dont want her in the house nosing into my family business. (sorry, little rant!!)

Hi Pos
Can you contact her manager and just say conflict of interest? Is there another one?
So glad you had a good time in GreeceI've got 3 weeks to go - stress!!!!!!!

Dwardle - I am all for it. I didn't do LP with DD but I know enough about it to see how it works and why. The only problem is that the patient has to embrace it and work at it. DD has been up and down but I know she has been using it for some things. Eating disorders take over lives and are very hard to get rid of. The practitioner is in regular contact with DD and is encouraging her. It can change lives but only if it is applied regularly. I do hope your nephew can do it .

Katsh sorry to hear you have more problems but really glad DD2 is improving.

Positive glad you had a good holiday.

Hi Positive - glad your holiday was good. I hope that dd3 picks up from the journey quickly - well done for taking a holiday! I'd ask the same questions as dwardle re. the lady - it sounds untenable, but I quite understand that you don't want to lose the support.
Dwardle - sorry my post was slightly incoherent - trying to hold two simultaneous conversations with children whilst typing never works . dd1 is yr 5; yes the head of her current school made the comment about teachers in his written response to me; yes I did go to see another school today - but private not state. dd is currently in a state school.
Got to go. DD2 vomitted tonight which is sometimes a sign that she's taking a downward turn so best get to bed in case I'm up in the night.

Hi
Katsh - cannot believe the Head put that in writing Have you decided what to do? I think there must be issues about the school if that was written. Not all state schools are like that, honestly!
Hope dd2 is okay today

Thanks Dwardle. Your judgement on the head's comment reassures me that my own judgement is not utterly skewed. We are going to suggest to dd1 that she spends a day at the possible new school this week to see what she thinks. I think (hope) she will love it. Dh and I discussed it last night and we do feel a move would be the best thing for her, even though it's only for a year. I do feel a real sense of peace today about it, so we hope that she will feel the same way. There have been a lot of problems with school. The slight catch is that even if we move dd1, dd2 is still on the role and it is where we are trying to re-integrate her. I do think that when she too is well we may need to move her, but it would be tricky at the moment. DD2 did have a dodgy 24 hours with some kind of tummy upset, but is picking up now. I am treading very cautiously so she had a pyjama day yesterday, and has been either in the garden or her bedroom today. She seems quite perky, but I know from bitter previous experience that if she does too much at this point she will have quite a set back. I'm going to use her appetite as a guide to when she is ready to do a bit more again. Hoping it won't be long. Hope you are having a good weekend.

Hi Katsh
Am so glad you have sorted something out for dd1 - your judgement is spot on!
Hope dd2 is feeling okay this am.I think it sounds very sensible to go at her pace.
My dd is off at a carboot sale with her Dad! Heaven knows what they will arrive home with - is usually books and plants.
Have a good day and keep us posted on how the trial day goes

Really glad to find this thread.

My DD is 22 and has been diagnosed with M.E. since she was 16 but first presented with symptoms at 14.

She certainly hasn't had an easy time of it. Her GP pushed forwards with CBT which for her didn't work, and as she had so many problems with her mobilty her physio decided to start her on GET which worked really well for her. That took her to the age of 18.

At 18 she then contracted Glandular Fever and she then hit her lowest point of functioning and was fed via an NG tube. Over the last 4 years we've been playing the 1 step forward, 4 steps back game. Every small thing she has landed herself inpatient for.

If you caught my thread in Education. She has been accepted to a London drama school and we're currently fighting each other and the system to get some support in place for her!

Hoping you and your DC's are doing as well as possible!

Hi Dawnsowl and welcome here.

Sorry to hear your DD has had such a long struggle with CFS/ME. Feel free to come on here and share with us. We are all at different stages of the journey.

How is everyone else doing? All gone quiet, so I hope that is a good sign for everyone. Exams overwith?
Here DD is doing surprisingly well and I am even beginning to relax and believe that we wont take a drastic dip ....... fatal last words!!!!

Katsch I hope your DDs improvement is continuing.

Dwardle Hope you are not too stressed out with your last few weeks at work.

Hi All - hope you are enjoying the sunny weather (at least it is here in the south east). Welcome to Dawns Owl ..uptil now my DD has been the eldest on the thread, but yours has now over taken her. My DD is 18 and has had ME for 3.5 years and hasn't been to school since then. At her worst she was bed bound, she is a lot better now but has a long way to go, currently has just done AS Maths with Nisai (online learning). Through using the Perrin Technique, she has progressed to being able to go out on a strictly limited and paced basis. Yesterday she managed the hairdressers and her therapist and earlier in the week she managed an AYME meet up for 3 hours which is fantastic when I look back to where she was. I'm interested to hear your DD is hoping to do drama ..I will look on your Education thread in a minute ..that has been one of my DDs dreams, although I think my DD now just wants to do it as a hobby.

Dawns Owl ..just tried to find your post in Education and am clearly going senile as I can't find it - can you point me in the right direction please!

Hi everyone,

This fell off my "threads I'm on" list, so I though it was time to come and see if everyone is doing well.

Hope all DDs are still doing well and enjoying the summer sunshine after the stresses of school/ exams etc.

DD has been really good here - the best for 2 years!!!! WHooooaaaaaa!!! Although last week I nearly came on for a hand hold when she took a massive dip, just to remind us that she is still not well! - just as I was relaxing!!! Today's the first day of her being back on track again, so hopefully it was just a minor blip.

Have a good summer everyone. Dwardle, have you finished your old job yet?

Hello All - like you I couldn't find the thread Positive ...in fact I had to do a search on it, but now I see you posted a couple of days ago so I don't know how I missed it!
Hope your DDs blip is minor Positive and everyone else and DCs are all doing OK and enjoying the summer. DD has had a bit of a rough time with headaches, leading to a huge amount of neck tension in addition. Ended up being put on Tramadol by the GP which she reacted to badly. This was while our Perrins practioner was away on extended leave but fortunately she's back now and DD is already far more comfortable.
Keep posting everyone!

Hi all
Positive - great news that your dd is doing so well. I hope the blip is a thing of the past. Choc - hoping that your dd is remaining more comfortable again.
I wrote a long post earlier and it was lost, so this will be brief. We saw Dr Crawley yesterday : good because she understands a lot and helped us to understand a lot; good because she thinks dd's outcome will be very positive; hard because she said managing younger ones is really very difficult, and she thinks dd can only manage 30 mins physical play/ socialisation a day. Tough when you're 8 and it's the summer. We are trying to figure out if we can still go on holiday etc. Haven't quite absorbed or processed all the info yet. Also a bit because right at the end she said she thought dd might have a syndrome and we need her heart checked out, and we may should see a geneticist. That was certainly out of the blue.
I hope that all who are quiet are having a great summer .