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.......

Lot's of good news there Katsh - Dr Crawley is very positive and tells you what the serious pacing means in terms of real life. Unfortunately, it is down to us to implement it which is very very tough when you have a DD who wants to do what 8 year old's do and play when she feels like it. It can be very difficult but it got my DD from a point where she couldn't stand up let alone walk anywhere to a point of moving back upstairs to her bedroom (she had to sleep downstairs) and being able to go up and down 3 or 4 times a day. It is worth it. Re the heart stuff - I feel really sorry for you - it is obviously not her specialist area but it might account for some of your DDs issues and if you got it sorted/managed through getting it investigated, it might improve things ..quite possibly some of the issues your DD has are not CFS/ME. Did she point you in the right direction for someone who is an expert ..I do hope so. Keep smiling .
Hello to everyone else ..hope you're all doing OK

choc thanks for the encouragement. It's good to hear of the difference it made for your dd. We just have to work out how to manage it all.

Hi, I've been reading this thread and the previous one, trying to come to terms with 12 yr old DDs diagnosis of CFS/ME. I can't say it was a shock because I've known for a long time she was ill but now it has sunk in I feel like she's been given a bit of a life sentence.

It's made me feel a lot better to hear what good recoveries have been made by many of the children talked about on here.

I'm trying to decide now what to do for the best - the Paed consultant we saw suggested that she will only be able to go to school for one or two lessons a day but I dont know if DD will even cope with that.

I'm just waiting now to see what support the hospital will be able to offer us - because i live in the west country I was wondering about contacting DR Crawley, but everything feels very overwhelming right now.

Sorry to ramble - I'm a single parent with three children (DD is the middle one) and I feel very lost with all of this.

welcome cuppycake ..looks like you were having a sleepless night over it. This thread is very quiet atm but hopefully will get a bit busier again soon. It must be tough being on your own with this sort of dilemma (I have to say it's been me really that's done all the research and made all the decisions in association with DD as she's older, but it has helped to have someone else's ear to bend who also sees what she's like). Only you will really know if your DD is up to doing 1 or 2 lessons in September because you are the one with her all the time. I know of many cases where pushing them to go into school has made them crash totally - my DD is one of them. Lot's of well meaning "just get her in for a couple of lessons ..it'll give her a change of scene and a chance to see everyone". I read somewhere that 1 hour of school is about equivalent to a 3 hour shopping trip in terms of energy which shows how draining it is for our children. I would very much recommend Dr Crawley (and there are others on here who would too). She will break the pacing down into detail and tell you what level you should start at - paeds may be sympathetic and even be knowledgeable but in general they're not experts. Hope this helps, ultimately the decisions are ones only you can make but this thread is brilliant for support because we know what it is like. So do come back and ask anything you need to.
Hello all ....hope everything is going well

Hello cuppycakequeen. So sorry you have had to join us, but I hope that you find this thread a help. I'd have been utterly lost without it over the past year. My dd is now 8 and was diagnosed just over a year ago. We just saw Dr Crawley last week and I would definitely recommend getting a referral to see her. GP's can refer to her through the choose and book system. Having had various paediatrician/ nurse etc advice over the last year it was great to see someone who really knows what she is talking about! As to school - again Dr Crawley was able to give us really good guidelines to follow to know when DD will be ready to cope with school again.

I really feel for you with 3 on your own and CFS to juggle. What ages are your other two? I have a dd of 10 and a ds of 2, and it has been mighty tricky to manage. I remember when dd was diagnosed having many sleepless nights and days when I couldn't eat as it was all so overwhelming. Do you have family/ friends around?
Keep posting. Hope today is a reasonable day.

Hi Cuppycake and sorry that you have had to join us, but you are very welcome and I echo what the others have said this was the one place that kept me sane over some really tough few months - in fact it was the reason I joined MN.

My DD is now 16 and she was seen by Dr Crawley, who was really good at putting a stop to the downward spiral and then we really turned a corner.
As for school, I can understand your confusion and concerns. For months we clung on for DD to attend and had a huge amount of stress through it all, then when she did give up totally in year 10 (November) it was such a huge relief for her and for us. We had not realised how much more it was putting on her and us. She never was able to return to the school, but had home tuition when she was up to it, and this last academic year she has been attending a specialist unit which specialises in CFS/ME patients. It was brilliant and I realise we were very lucky to have that facility. She was only up to 3hours a week with 1 hr home tuition. In Septemebr she is hoping to be able to do a college course to catch up a bit academically, for 11 hours a week.
It really is not the end of everything if your DD has to give up school for a while. Yes, some things may be missed, but it is better to get her health sorted and she WILL get better from this.

I am pleased you have found this positive thread and you can see that this is not a life sentence for your DD. Things really WILL improve and she will have a good quality of life again.

Does your DD have good friends? Do they understand how she feels and keep in contact with her?

Yes it is all quiet on here at the moment, isnt it? Hopefully because we are all having good times.
Here, DD went into town this week, which was a huge achievement. Last evening she went to the Cowes Week finale fireworks, but she got attacked, so not a good evening. It seems so unfair that this happened to DD, who so rarely gets out of the house. i just hope it doesnt knock her confidence.

Hope you are all doing ok and are managing to enjoy some summer holidays.

Thank you all for your support, I think the shock is starting to wear off a bit now so Im starting to think a bit more clearly now. I think part of the problem for me is that I want to do something. I think that getting a referral to Dr Crawley would be a positive place to start.

My natural instincts are to let DD pace herself and I dont want her to be pressurred into going part to school - she was alot worse when they kept trying to send her homework and catch up stuff.

Her Dad has taken her out for the day today and she always overdoes it to please him so I know I will have a very poorly little girl on my hands this week. I have invited some of DD(age 7) round to play and organised her to go out with my Dad for a day so hopefully I can still make sure she has a good holiday even if I have to stay home with DD.

Take care all - its good to hear about the progress your children have made.

Hi Cuppycakequeen, I'm sorry you have had the need to join this thread but you will find a lot of information here from mums like yourself who have been and are going through this awful time.

My DD has recovered from CFS by resting and pacing. There are others who have done the Lightning Process and have found it to work well. It is not for everyone but can really make a difference for some.

Dr Crawley is a respected authority on CFS and an appointment with her is a good idea. We also found that keeping a diary helped us to look back and recognise symptoms and stresses. Stress plays a big part in this illness and I think the others will agree with me that it needs to be avoided as much as possible right now. There are various alternative remedies that some find helpful - my DD used to see a homeopath - and I also think that good nutrition is important. Another good Doctor is Prof Findlay - I can't remember exactly where he is located but I can find out for you - he has been very good for the DS of a friend of mine.

Remember that your DD will get better although it can be a long drawn-out recovery.
School will have to wait for a while until your DD feels strong enough. Our DD missed a lot of years 8 and 9 but started back slowly and has been full time since the start of year 10. She did change schools at that point but had been a day girl at a private boarding school where the long hours and weeks were just too much.

Hi to all the others, we have been busy here ensuring that DD puts on weight (ten pounds now) and she is looking much better for it. She has just booked a hair appointment for herself - to have highlights put in - and is planning events with friends. She went through a tough time but is getting there, and speaks to her LP practitioner every two weeks for support. She is also working two days a week for DH and has a regular weekly babysitting job for the Summer.

It is so good to read of the improvements that many of you are experiencing but Positive I am so sorry to hear of the nasty time your DD had. I hope she can get over the shock and does not suffer because of it.

Look forward to hearing from you all..

Hi21, so pleased to hear all positive things about your DD with the weight, the jobs etc. it all sounds really good for her. Well done, both of you.

Thanks Positive - how is DD now?

A bit of a dodgy day, really - emotionally and physically. Hope things will bounce back quickly over the next few days. She choked at tea time, which is normally a bad sign of things really slumping, but I am hoping it was just a one off bad moment .

Positive sorry to hear about your DD's bad experience. Hopefully she will bounce back.
Twenty One Again glad your DD is doing OK.
CuppyCake hope your DD isn't too tired after spending time with her Dad. Is he "on board" with the CFS/ME and involved?

My DD hasn't been so good lately - she is having very bad headaches and the last week or so also seems to have had a virus, although that seems to be going now. However, we are all looking forward to our first family week away for 3 years - we have rented a house overlooking the water so DD will be able to watch the boats go by if we go out and leave her behind.
Have a good day All.

Just a quick post - dd is now the proud possessor of 6 gcses - an A, 4 Bs and a C! We are all so pleased for her - and a bit shocked that she got b for biology which she learned rather half heartedly from the cgp guide!
Hope you are all okay and having a good summer - also hope that PA's dd has recovered from her horrid experience. Have been away - will post again properly soon.

Congrats to your DD Dwardle, she has done really well. My DD got an A in her AS Level Maths. She has had a really rough month (apart from doing well in her exam!). We think she had a virus at the beginning of the month, but it really knocked her for six. She is only now getting her appetite back and just starting to be able to get out again. We are off on holiday on Saturday which we are looking forward to. Hope everyone has enjoyed the summer.

Congratulations to both your DDs , they have done tremendously well and deserve those results. I am so pleased for you all.

I too hope Positive's DD is ok.

Enjoy the summer everyone - what's left of it!!!

Fantastic news, Choc - what a star!Hope the holiday really helps your dd to feel better - and I hope it stops raining (think it is forecast to by Sat)
Thanks for your message too, 21. Hope evryone is smiling in their thermals!

Dwardle and Choc, thats fantastic news. Really pleased for both of your DDs.

DD3 has been ok since her attack, thanks.

We have had a good summer. She has been able to go out a bit, has been in town even twice, which has all been good. We still have bad days, today has been the worst for ages. Not sure why, maybe just an accumulation of doing general things over the holidays.
I am sure she will bounce back quickly, though.

Dwardle good luck with YOUR new job, too.

Waves to everyone on here. Katsch how are things with your DD?
Choc hope your DD bounces back quickly, too.

Positive - So glad your DD is ok and I too am sure she will bounce back from this slight downturn. The general trend is upwards and she will get there .

How is everyone else doing?

Well done Choc and Dwardle on the exam results! Positive - hope your dd has picked up again. 21 - hope you've had a good summer and dd's return to school this term goes well. Cuppycake - how are you?
We've had a funny month - after seeing Dr Crawley we realised that we shouldn't be taking dd2 on our planned holiday, so I have been away with dd1 and ds, and dh stayed home with dd2. dd2 has increased her baseline of red activity from 4 1/2 hrs to 5 1/2 over the month so that is encouraging. However dd1 is back to school from today so we are now back to doing school run journeys etc so that may have a rather negative impact. Dr Crawley said no school until she can do 2 hrs daily so we are not attempting anything yet. Home tutor will start again next week and is planning to come every day for 30 mins. I have to say she does look dreadful at the moment, but is in good form, so hopefully she's ok. I hope everyone has a good weekend.

Hi all, glad to hear about the good exam results. I've been into DD's school to see how we are going to manage her education this year and I have to say I was pleasantly surprised. The school was completely on board and very knowledgable about CFS/ME. They are happy to accomadate DD doing as much or as little as is needed probably a hour a day to start with, they are going to provide TA support for when she does go in and a link tutor to keep her in touch as well.

I went in all hyped up ready for a fight and they just bent over backwards to be nice and positive.

We are getting geared up for our first support group meeting on wednesday but the two ladies I've spoken to so far sound really lovely.

We've had a bad week this week as far as the CFS goes - she has been so weak I've had to cut up her food and give her drinks in a sports bottle. Her Dad has been more supportive and took the little DD off for a couple of days which helped.

She is better today although actually she is more grumpy and miserable on her better days than when she was really bad!

Catch up with you all again soon xx

DD still not well enough to go to school even if she only has to do an hour a day. I'm trying to fill in the DLA forms and its very difficult because she can vary from day to day. I have to say she's been so much worse lately.

Ex-partner came to take her out for the evening and it took her two hours to get dressed,I wish he could understand I'm not trying to be difficult when I say shes too ill to go - I know that the effort of just going to a different house for the evening means she wont be up to going to school again tomorrow, maybe even longer.

She was crying when I brushed her hair - is scalp sensitivity a common issue with CFS do you know? I feel very low at the moment - its bad enough when they go to him anyway let alone when she is so ill and upset.

Sorry for moaning, hope all your dds are ok, love Cuppycake xx

Hi All - we had a great week near the New Forest last week and DD did really well. We did end up using the wheelchair so she could do more rather than get worn out moving from one place to another but she accepted it (which she won't at home). Since we got back, she has been very tired but well in herself which is also very positive.
Cuppycake - DLA forms are awful to fill in and very depressing. It is very important that you tell them everything, don't assume they will realise and use terminology such as "on a bad day" and "on a less bad day" - definitely don't say "on a good day". I wish you the best of luck with it. The citizens advice bureau can help you with filling in the forms too.

Cuppycakequeen - sorry to hear about your ex-partner's difficulty understanding all of this. It is not good that activities with him are causing your DD to feel worse. Have you got an appointment with Dr Crawley yet? It may be worth taking ex along if you have. He also needs to be given some information about CFS so that he can be more sympathetic towards both yourself and DD. Maybe you could persuade him to look on some of the websites - A.Y.M.E. and the M.E association spring to mind.

You could also refer him to this thread and our previous one.

Keep posting..

Hi Cuppycake, My DD had really bad scalp sensitivity and we didnt brush her hair for months because it was just all too bad for her. We saw Dr Crawley who explained to us that the scalp sensitivity was the brain over-reacting to stimuli and sending signals of pain. She explained that if DD could start to do very small touches and gradually massage starting at the temples, then gradually getting all over the whole head, these messages would be reverted to not overreaction. (sorry, not very good at explaining) DD was thrilled that she could actually do something to help herself and really took this on. Within a few weeks she was able to massage her whole head and it was so much better. Still on a bad day she will sit and massage her head as she feels she is doing something positive and taking control of just a small thing, but after feeling so out of control, it was a real boost.
Sorry, I am sure you have said, but how old is your DD? Dont worry about school. I know its easier said than done, and it took me ages to accept this, but just forgetting schooling was the best step we did for a very long time.

Things are sounding more poesitive with you Katsch, I'm really pleased. Hope it continues.
Really pleased that you had a good holiday choc and I understand the wheelchair issue!! That is so much like DD here.

DD starts college in the morning and is already in bed in preparation. I phoned up about her getting a bus pass, which would help us a lot, but she is refusing to use it if it has the words "disabled" on it!! Stubborn as a mule!!! We are hopeful she will manage the 11 hours a week, but we will see. She is as determined as ever!

Hi all, its so good to heasr your views and opinions. Thanks positive for your advice re scalp massage I will suggest it to her in the morning. Choc I'm having the same probs with getting dd to accept using a wheelchar to go out - at the moment she prefers to just stay in - she's 12 and find everything terribly embarrasing.

Twentyone I havent made the appointment with DY Crawley yet because I want to have our first appt with the Occupational therapist and see what she suggests first. Its not just DD who can only handle things in small doses!

Feel abit better noww but i've got to get these forms sorted -I'll never be able to afford to drive her to school and back everyday without some help. Although to be honest I cant see her managing it just yet anyway.

Take care all, cuppycake xx