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.......

we are also Herts - we see Dr Cohn at Hemel and he just referred him to a St Albans NHS Physio who has been fab. (After we saw a useless Dr at Welwyn who said 'yes he does have ME/CFS and while it's lovely to see you I am not sure what you want me to do about it'!! Took another year before we were referred to Hemel and that has been just great -got referrals to CAMHS and Physio and he dealt with school and ESTMA too. Not sure how age impacts on this - the clinic at Hemel is in Children's OUtpatients and the physio is in the CHildrens centre - not sure how old your daughter is?

Incredible coincidence! Bobala - I have messaged you, hope you get it - I've never used this before. My DD did used to see Dr Cohn who was very helpful but unfortunately she got too old, there is no adolescent provision in Hertfordshire (or so we were told by the GP and Dr Crawley).

Hi,

Had a phone call from DD3's careers advisor today, which ended with me blubbering away like a loony and getting really cross with him.

For weeks the college have been getting on at DD to do more hours at college. Meeting a few weeks ago and I tried yet again to get them to understand. . Anyway, I said I would get a letter from her consultant to say that she should not do any more hours. She is doing 8 hours at the moment and has managed to keep up with all the work. She has not got the qualifications to get into the hairdressing course she wants to do, so was advised to do work experience to show her enthusiasm. They said she could not miss college to get experience, and Easter holidays would be too late. So I asked a favour of a friend who owns a salon. She loved the first session of work experience. College tutor then told her that if she could manage to do the work experience she should be able to stay at college for longer.
Meanwhile consultant sent letter to the college saying that she must not do more hours. Phone call today: Apparently because we have a letter saying she cannot do more hours AT THE MOMENT, it means she will not be interviewed for a place in September. With the work experience she has done 11 hours. In September she will be doing 12. They say she wont be well enough!!! FOR GOODNESS SAKE last September she went from 2 hours a week, to 8, so we have full confidence that she will be able to cope.

In summary, the letter they asked for has now been turned against DD and has ruled her out of doing what she wants to do next year.

They just dont want to be bothered with her and I am sooooo fed up!!! Those of you who have been on here for years will know the struggles I had with school 3 years ago. I thought that was all behind us. Now I just feel that I cant let DD down now, but on the other hand, I feel as if I want to give up now and never speak with anyone to do with education ever again. EVER!!!!

Sorry, just needed to get that out!!

Positive - I'm so sorry that you've had such a distressing time with the college again. It really beggars belief how some people with absolutely no understanding of CFS can make such devastating pronouncements about what can or can't be done by our children. Does your dd3 know what they've said yet? You haven't let your dd down - you are there fighting her corner in every situation. I hope that you have clarity about what to do about this situation.

Bobala - that's really great news ! I hope all continues well for you.

DD2 has now managed 8 sessions at school! She is relaxing into it and so far so good. She is really happy to be back with her friends and I don't know what to do with myself now when 4 mornings a week I have 1 hour with no children to look after!

Positive take some deep breaths or scream which ever you prefer!! You are doing brilliantly for your DD. They really don't seem to have any idea at the college at all ..I am totally gobsmacked! Hope it gets sorted out - is there anywhere else she could go? Are you in contact with Connexions?
Katsh brilliant news. Enjoy your tiny bit of child free time ... read some magazines, put your feet up, go on MN ..you deserve it :)

Thanks for the replies. Unfortunately, living on the Isle of Wight, we are very restricted and we cant even travel anywhere for another college. Plus, its the Connexions guy that had me blubbing down the phone today! DH will be back from work late tonight, but I am sure he will help me calm down and make some sense out of it all. He is brilliant like that. I also have emailed her Paed, who is fab on every level and see what she says about it all.

Good news about your DD, Katsh.

totally irrelevant and unrelated to ME/CFS Positive attitude - I am an Isle of Wight addict and am planning my escape there once my DSs have left secondary school! My son is always better by the sea and last summer you could find me sobbing on the beach there as he frolicked in the sea (in full wetsuit for warmth!)

Hello everyone.

I hope it's not against the mumsnet rules to post this. If it is then I'm sorry and please delete it.

There's a facebook vote to win money for ME research happening right now, the vote closes Wednesday night USA time. All you need is a facebook account to vote, it doesn't cost you anything apart from two minutes, and you can be anywhere in the world.

I'm sure a lot of you know there's hardly any money spent on ME research, so anything we can get for free is great.

First you go to www.facebook.com/ChaseCommunityGiving and click "Like"

Then you go to apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-fo and click the green vote button to vote for WHITTEMORE PETERSON INSTITUTE. The Whittemore Peterson Institute researches ME, autism, fibromyalgia and other related conditions. They are currently in 8th place, and the higher up they go, the more money they win. The top prize is $500,000.

Then you pass this info on to your friends and ask them to vote too.

Just in case anyone is still out there I just wanted to let you know that my dd attended a full day of school yesterday for the first time in 25 months . She is so much better and I really think it's just a case of building up her stamina again. She only did a half day today, but the idea is to alternate for a few weeks and then gradually increase. I can't believe we are seeing this recovery. I hope that you are all ok, and that your children are managing ok too.

Hello Katsh and anyone else lurking ...I pass through from time to time but there hasn't been much going on for a long time. That is such brilliant news - I bet you and she are absolutely chuffed. Hopefully, as long as you keep the pacing in place, you will be able to build up gradually - I am sooo pleased for you.
My DD has had a very wobbly year so far - most of it probably not related to ME. She has had a long running saga of digestive problems and has lost more than 3 stone - she is currently getting very, very skinny indeed. We are hoping, after a visit to the gastroenterologist earlier in the week ..following ultrasounds, endoscopies et al, that we may be starting to resolve it ....keeping my fingers crossed tightly atm! Other than that she is in the middle of her Maths A2 exams - 1 module down, 1 to go next week.

Hope everyone's DCs are doing well.

Hi Choc - nice to see you! I'm sorry to hear that your dd is having problems. 3 stone - wow. I really hope that things start to resolve for her soon. I'm very impressed that she's doing her maths AS in the middle of it all.
Thanks for being pleased for us - you know I really would have struggled these past 2 yrs without you and dwardle and optimistic and positive - so thanks for all the support. I hope that things start to pick up for your family soon.

Hellooooooo everyone.

brilliant news Katsh. How is it going now?

Choc - Sorry to hear that DD is having additional problems. really hope you can get to the bottom of it soon.

Here DD has completed her college course, which she is pleased about. Since not being in college ove rthe past 4 weeks she has taken a real dip, though. She just is not bouncing back as I would have hoped. She collapsed yesterday, which is the first time in ages. She has trouble getting around the house without the help of furniture again, too.

Just to let you know that the facebook vote I posted about a few weeks ago ended up winning $40,000 for ME research. So well done to everyone who voted!

There is another similar contest taking place now, except for this one you can vote everyday. It's really worth doing as if the Whittemore Peterson Institute can maintain their current position they will win $100,000, and if they can rise up the chart, they could win $250,000 to spend on research. It doesn't cost anything to vote.

Here's how to vote

Log in to facebook
visit www.facebook.com/VivintHome and "Like"
visit www.vivint.com/givesbackproject/charity/769 and "Login"/allow permission.
Scroll down the website to the "Vote" button, and vote.

That's it! Then every day log in to facebook and visit www.vivint.com/givesbackproject/charity/769 to vote again, until the vote closes.

Just spotted this thread has come back to life and thought I'd better add to it.

DD completed her GCSEs yesterday and I have to say that she is enjoying life to the full and chronic fatigue simply doesn't feature at all. We don't fear a relapse as she is stronger mentally and physically than she has ever been. We did have a bit of a scare last year over her eating but we have dealt with that and - again as far as she is concerned - it is a part of her life that is over and will not be repeated.

I want you to know that it does get better and that there is light at the end of the tunnel.

Hope you all have a good summer.

twentyoneagain - hello! That is great to hear that your dd is so well. Well done. dd is doing so well here - she has just completed her 2nd week of going in for full days every other day, and to 1pm on the alternate days. She also took part in sports day and hasn't needed any sort of day time rest for 3 weeks now! Today I went for a 2 hour bike ride and had a leisurely lunch by myself at 2.30pm - it's all rather good : ) Choc - I hope the tests your dd had have given you some answers? Positive - what's your dd's situation for next year - did she get the work/ college courses she wanted? I seem to remember the college were being very difficult about it all.
Have a good weekend everyone.

Hello Everyone
So good to hear your good news Katsh and 21 Again- sorry it is not so good for Choc and Positive.
Here, DD has done her AS levels and is now checking out Unis! She has used her Lightning Process strategies a few times during exam stress and is fit, healthy and positive. She is learning to drive
I really feel for you Choc and Positive - hope the summer when it finally arrives gives you a boost.
Will check out the Facebook thing CFSKate

Hi stranger Dwardle, really pleased for you and DD that she has done so well and is putting CFS/ME behind her. Are you ok, too? Not "seen" OM around the board for ages.

DD3 is still plodding on. Really disappointed that she is really no better this year than she was last year, but hey ho, she at least has some quality of life now and we will just keep going!

Hope DD is still doing ok with school, Katsh.

Hi to choc and 21.
Hope you all have a good summer.

My DS managed a full week last week for the first time in 10 months. This week he did 4 days but yesterday he stepped in at the last minute for someone who was sick and ran the 1500 metres for his House in Sports day and came second to someone who runs for County! Needless to say he was asleep within 20 minutes of getting home, but he was so proud of himself. We are off to the magic of the sea next week so hopefully the sea air will keep him going in the right direction -fingers crossed!

Brilliant Bob, a huge step forward and with the summer holidays just round the corner, i hope he continues to enjoy more of life!

I just thought I would add a post here in case anyone needs some support during the autumn term, which is always the worst time for young CFS/ME sufferers.

am hoping that the absence of anyone on the thread throughout the summer was because your DCs are improving and getting on with life.

Hello Positive! Very thoughtful of you to post. Yes, my absence is because dd is well . She has returned to school full time and we are now on week 4 and all is going well. I'm finding it strange to re-adjust to " normal" ways of being again. How are things with you and dd3?
Thanks for the invite to the christian prayer thread meet up - I guess I missed it! Did you go and was it good?

Hope all is well with you and all the other ex-regulars on this thread.

Hi Katsh, great to hear how well your DD has done.

Here DD3 has not done so well. SHe is attending college now for 10 hours a week, but that seems to be her energy used up for the entire week. SHe can't do anything else and on a Monday when she has her longest hours at college she is unable to talk or walk by the time she is indoors, goes straight to bed and only manages to be human again on a Thursday morning when she is back to college. (days off Tuesday nd Wednesday, thank goodness!) She absolutely LOVES her course and is so enthusiastic about it. I just hope and pray that things will settle down a bit again and move in the right direction.

Yes I went to the meet-up in the summer. It was a good day and really weird putting faces to names. I am amazed at how different people are in RL than what I have as a picture in my head from their posts on here.

Hope everyone else is doing well.

Hi All,

DS has been given diagnosis of CFS as direct result of Parvovirus B19 complications and Pediatric consultant and GP very supportive. He did 1 full week school, crashed and was off 2 weeks and now on part-time. Today should have been in for 2 lessons ( did three + break yesterday) , is resting today and hopefully back in tomorrow for 2 lessons.
What I wanted to ask is when you are pacing your child (he is year 8) how do you get them to spend any time doing absolutely nothing and minus stimulation of any sort. I am pacing with activities and trying to get him to spend 10 mins total rest every 1 hour, but not very successful. He will draw quietly and read, but the only time he does zero is when he is really feeling bad.
Grateful for ideas.

Also am worried re school and what they might do if he cannot manage even part-time every day. Got letter from them saying that when he is off I should see GP and provide copy of appointment card!!!!!!!!!!!!!!!!!!!!!!!
I don't know of anyone who has an appointment card when going to doctors!

Anyway as he is off today and crashed in bed resting, I am certainly not going to the GP today especially as there is no way I would get an appointment with his GP and it is pointless him seeing anyone else and anyway there is no benefit in taking him to the GP today.

What I am doing is keeping a brief summary of days/ hours attended school, when he is off and why etc which I will send to the GP.
If he is going to be off more than a couple of days and not improving energy wise etc,then I think would be the time to try and get appointment. We are going to be seeing GP for update at half term anyway.

Thanks
Lynda

Hi Lindipops, sorry to hear your DS is suffering, too.

I had terrible trouble with DD3's school, so I feel your frustration. Have you contacted AYME? They have a fantastic website and the helpline was literally my lifeline for the first year of this. It would be worth giving them a call and seeing if they would be prepared to speak with your school and explaining about CFS/ME. If not, they have plenty of leaflets you could take in to explain about it, which may make them a bit more understanding towards you both.

As for the pacing, when DD3 was doing that we were told that she could watch TV, but only programmes she had seen before, so not too exciting, listen to music, listen to stories being read via earphones, It is soo hard to keep the inactive, but awake!!

I am in a hurry now, but please feel free to come back and ask questions, I will try my best to help in any way!

Hello All ... long time no "see" and welcome to Lindipops. I would agree with what the others have said. It is really difficult to get them to totally rest ... think music is the only thing may be ... it's more the highly visual stuff that they need to have a break from pc games, exciting TV etc .. but it seems to be OK for them to watch something they've seen before. Hope you get the school sorted - if the paeditrician is supported perhaps ask them to write a letter setting out the difficulties and the fact that you won't be popping to the GP every time he can't go.
Pleased DD is doing well Katsh and Positive sounds like your DD is hanging on in there. I was very interested to read your comments because things are quite difficult for my DD atm. Firstly, we got the digestive issues sorted and DD is now eating like a horse (although she is still very skinny). She also got a B in her Maths A Level which we are very proud of. She was very very keen to go to college to do her Physics A Level and we arranged for her to start at the beginning of term basically doing 2 x 2 hour sessions a week, none of the offered extras. Right from the word go, she was unable to do anything else at all, other than a bit of homework, it was often an effort for her to make it to the shower etc. Then she started coming out and her arms would be shaking badly. This would eventually ease up but the arms would get painful, so much so that i would have to cut her dinner up for her. Thursday morning, she crashed badly feeling dizzy and sick and didn't go in. In the small hours of Sunday morning we woke up to screaming and she had collapsed in the hall in agony which took some time to wear off. Monday she had a migraine and so it goes on. I have a meeting with the college tomorrow, having agreed with them last week that she would reduce to 1.25 hours each session, I now think that is too much. I am feeling quite stressed right now!!