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.......

Hi Choc so sorry that DD is struggling with her education again. Its so hard, isnt it. I am so worried that DD3 will have to give up on this course that she is absolutely loving. She struggled through last year hating every minute of her course, just because she knew that she needed to do it to open the doors for this year's course, now she is enjoying the course, but it certainly looks uncertain whether she can do it. Like your DD, she comes out with her legs shaking and has got to the point of not being able to feed herself and talk coherently within half an hour of being home. I can just see this all slipping away.
I am hoping that when she has settled in the course and she is not using energy up being so excited about it every day, maybe things will improve......am I clutching at straws?????
Its good news about the food, though. Well done her!!
How did the meeting go with the college today? I hope they are being supportive.

((hugs))

Hi Positive ... it all sounds pretty similar really! What is the course your DD is doing now? My DD was just so keen to go out to college after so long being at home and now we have taken a vast step backwards. She has now just totally exhausted herself washing her hair and having a shower ... just as she used to. On the up side, I met with the college principal yesterday and he suggested that (as they also run a private tutoring service) the tutor could come to our house for a while and build up. At this stage, she will definitely not be doing a module at Christmas and we will review next summer early next year but this will enable her to do a little, though not what she wanted at all. Anyway, we have agreed that I will get in touch when she has levelled out a bit.

Heartbreaking isn't it? Just as I thought that life was looking up for her!

DD3 is doing hairdressing.

Its good that your college seem understanding and maybe a private tutor would be a good step for a while.
I spoke with DD3s tutor before she started the course, but DD has not wanted me to contact her since. She is so worried that they will tell her she is not well enough to do the course, but the fear of that is making her push herself too much and so making that far more of a possibility, IYSWIM.

I hope you have a good weekend.

Positives and negatives here -my DS has just managed to get into school for a whole half term for the 1st time in 5 years! Busy celebrating (and dozing) over the weekend -he decided he was up to his football match yesterday -and fractured his wrist! So now we are back to trying to keep him positive as his few plans for the week have had to be stopped - and this morning we have the joy of hanging around in fracture clinic to look forward to -A&E was bad enough yesterday -he has 'NHS related Tourettes' and cannot stop himself moaning about the state of the NHS whenever he enters a medical facility - I have my Ipod and book ready and will be pretending I don't know him if he starts in the waiting room! Just when things were looking up finally we hit another set back - maybe if we don't have to wait too long and he gets the fluoro pink cast he is hoping for we can keep things positive!

Fantastic news about schooling Bob. A bit pants about the fractured wrist! Hope the hospital wasnt too bad!!

Does anyone on here get DLA for their DC? We have had it for 2 years and have just been told that our payments are going to stop. I know lots of people dont agree with DLA, but it has really helped us with all the extras that are needed to maintain as good a quality of life as possible for DD3. I feel like it is a bit of a kick in the teeth that it is being stopped. The reason we were given was because she has no treatment, or medication and lack of medical tests to prove CFS/ME!!

DD3 is just about holding on at college. Absolutely no life other than college, though. Its college/sofa/bed. Still, she is enjoying it so I really dont want to curb that unless she deteriorates further.

How is you DD, Choc?

Sorry to hear about your son's wrist Bobola". Positive* things are not good at all here. DD has gone down hill so fast. Thought she'd stabalised but since yesterday she's been in agony .. every joint and bone in her body hurts ... just hope that goes as fast as it came! Yes, we do get DLA for her ... I had read somewhere they are not renewing cases who have had it previously ... ours is due for renewal again next year. Makes me so cross, but a lot of people with ME do get it on appeal. Got to rush off now but I'll come back to you on this later.

Hi. I am new to Mumsnet and looking for advice and support. My 15 year old daughter has recently been diagnosised with CF and I am floundering as to how to support both her and myself. I am divorced and live with my new partner but her dad refuses to believe she is ill, has broken off contact with her and has told school their is nothing wrong with her. He has also called in social services accusing me of abuse by making her go through loads of test to eliminate other conditions!! Social Services have accepted the consultants diagnosis but have advised me that he is taking legal advice. I don't care less about him but am struggling with how best to support Amie and how much I should or shouldn't push her with school stuff as she is in her GCSE year.
Any help, advice, support gratefully received.

Welcome to mumsnet and especially to this thread WelshSue. I will come back and give respond properly this evening, if thats ok. I am just dashing out of work to collect some DDs and run around like a mad thing between shops - college - dentist - DH's work and home for a few hours.

"speak" later

Hi again, (I fell asleep last evening after an exhausting day, so am now wide awake at stupid time! )

Firstl, sorry that you are having to join us here on this thread. Its a hard illness and very badly understood by so many people. Its good you now have a diagnosis and that the Consultant has supported this. from my experience, if the consultant has given this diagnosis, then people, such as SS do accept it an d hopefully any legal people would too. That sounds a really bad situation for you all.
Is your DD managing to get to school every day? Is she really exhausted after school? How is the CFS affecting her in her day to day life? All I would say is that if she has to delay taking a few of her GCSE's its really not that bad. We struggled so hard to keep DD3 in school and on track for where she should have been, but in the end had to admit defeat and it was such a relief to everyone when we gave up that fight. It is not worth making her worse just to do all the gcse s that her peers are doing.
Is the school understanding? Have they advised anything? Could you ask annyone there you could discuss this with and come up with a plan? Maybe there are some lessons that are not necessary and you DD could have a rest during those and concentrate on the ones that she needs to do.
Feel free to ask away here. We all have different experiences of this illness, on different levels etc.

Ho Choc How id DD now? Have things settled a bit again?

Advice very much needed. DS has managed very little school this term and in fact has'n t managed to go back since a week before half term. He struggles with the work he gets from school and hasn't managed his p/t timetable.
We made the mistake during half-term of letting him go to a football match and he has crashed since then. He is slowly getting better 4 out of 10. Anyway I got a phone call today and an education welfare officer is come to see me tomorrow. I am really worried and I don't know what this means or what to expect - but it is scaring me. The GP has also suggested he go to CAHMS, but I have said I would rather not. However I think the GP is going to push for it and I am upset as he does not have mental health issues. He really wants to be well he hates being and feeling ill. He wants to go to school and to go out and do stuff, he wants to be able to play on his Xbox, play football etc. The being ill is what is stopping him.
Has anyone here had this and did your child go to CAHMS. I feel very unhappy about this. I am really really stressed out - Help please.

Hi Lindipops - I really feel for you. Does your DS have a diagnosis? Has he seen a paediatrician? I think it would be better to ask for this if you haven't already. As you know, it is important not to push things too hard when you have CFS/ME, unfortunately many people in education seem to be of the opinion that education takes priority over health. It sounds as if your DS's current part time timetable is too much for him and perhaps you need to get it reduced further. Education Welfare people are often very, very nice and not out to "get" you. If you have any reports on your DS have them ready to show her. The AYME helpline are also excellent at giving guidance on this type of thing if you do have problems in this direction. So far as CAMHS is concerned, it seems to depend very much on who you get to see. There are psychological implications of having the illness, this is not the same as it being a psychological illness iyswim. Good luck and t ry not to panic (easier said than done I know!)

Thanks chocaholic. He does have a diagnosis of CFS from the consultant paediatrician and the GP had written to the school. I am really hoping that she is really nice. Re the CAMHS - my gut feeling now is that actually it could potentially be damaging. At the moment he knows he is ill because it is taking a while for his immune system to recover and that it is important to pace his activities so he can get back to his life. He knows he will recover in gradual steps. If he gets someone who thinks CFS is all in the mind and is a symptom of something else going on at school or home or in his mind, then that is wrong. I would be interested if anyone else with a child/ teen with CFS or M.E has been referred to CAHMS.

Hi Lindipops - Firstly, the school - What year id DS in? I would definitely say to take a deep breath and perhaps even take him out of school all together for a while if needed. We had to do this for DD3 and as soon as we did the relief was huge. It is really counter productive to put pressure on for him to go to school as it will only set him back further. As for the EWO I was told they are really good with people who are ill and trying to help their DCs. My experience was slightly different. Mine was useless and although she certainly didnt have a go at us or anything she was like a wet rag! You have nothing to worry about as he has a diagnosis and you are looking after his health, which needs to come first.

Secondly CAHMS - DD3 was sent - twice! First time was a disaster. DH took her, DD3 was too exhausted to sit in the chair for more than 15 minutes, DH said he needed to take her home as she was too tired for the appointment and the cheeky woman then wrote a letter to the paediatrician saying that we were over-protective parents and she wanted DH's "inappropriate" protectiveness looked into. Our paediatrician went for her like a bull at a red sheet! Wooooo she went mad!! Anyway, second time we had home appointments because she was by then totally housebound. This lady was ok. She set up a pacing programme, but after a few months she seemed to get frustrated that DD was not making more progress and seemed to want to push her to do more than she could do and sort of lost sight of the illness. With paed's consent she was kicked into touch as well!! So, I would say it is really nothing to worry about. They certainly do not approach it all as if it is a psychological illness. That has never been even hinted at for us. It did give DD someone she could talk to and talk abut how she was feeling about losing so much of her teenage years. I would suggest giving it a try (even ask for home appointments if DS cant go out) but be prepared to say enough is enough if it isnt working.

I'd also recommend AYME - their helpline people are brilliant and will give you any iinformation you might need for the EWO or for CAHMS.

Good luck and let us know how things go.

Thanks PositiveAttitude. DS is in year 8, but there is no way DH would agree to DS being taken out - I can certainly see all the benefits of taking him out. It was wonderful just not to have the pressure over half-term. I do wish it was possible to remove for the rest of year 8 and have him back in year 9. But apart from it being too late to apply for year 9 if we were going to do that, there is unlikely to be a place as it is an oversubscribed school.
I think what I have learnt is that when he gets back to school (fingers crossed next week) that I am really strict and I don't give in to the temptation of allowing him to do anything extra and I stick to the 'same' until he can do the p/t feeling fine and not ill which of course includes homework etc. If he does feel able to get into school and it doesn't backfire, the GP will probably not bring up CAHMS again. He has joined AYME but not used it yet. He is more CFS and not M.E thankfully , but am aware that it could become that if not careful.
The EWO has not turned up or phoned and she is over 2 hrs late. She definately said 'tomorrow' which is today. So maybe she meant Friday and was having a confused moment. Really annoying. I hope your daughter will get better or better enough to get through her course. Bobala's good news is wonderful and it is great to hear.

Hi, I'm new to mumsnet but really need some support. My DD2 aged 14 was diagnosed in the summer with CFS and we have our first home visit with a CFS support woman next week.
Its just soooo unfair and I dont know how to cope with the sadness she has and just need a network so I have an idea of what to do.
She has good days and bad days, but manages 3 ish days a week at school, she was very with active horse riding, netball team etc and has had to give it all up. School is supportive mostly and she now has a statement, except the work placement teacher wants her to do something next year! Cant get through to her its not happening.
Anyway rant over for now :)
Thanks for listening.

Lindipops - I know its hard, but it is probably best not to do the "extra's" that used to be so normal!! Hopefully by keeping to a very strict timetable and same amount of time each day Etc he can start to build up again.
Did the EWO turn up? Were they just putting frighteners on you? I know when DD3's school were being awful they kept threatening the EWO - in the end I begged them to tell her to come and see us because I wanted her to see it was the school being unreasonable, not us!

Meltoadhall - Welcome to mumsnet and to this thread in particular. Can I suggest you take some time to have a read through this thread? there is one before this one, too if you wanted to have a look at that one. (let me know and I will do a link for it, if you want to) It will give you a real insight into the journey we have all been on with our DCs. It might just be encouraging to know that you are not alone. It has been a long process but all of us that have been here for a long time have seen improvements, even if they have a little slide back and forth for a while. My DD was also 14 when she was diagnosed and had aslo been a very active teenager. It seems to hit the active/determined teens! Dont worry about the work placement teacher - just fob her off and be evasive. If your DD cant do it she will have to get the message and I shouldnt worry about it now.
Is your Dr helpful? It sounds promising that you have a support lady coming. Which area is that from? Is it Dr Crawley's team, or a London one?

Please feel free to come back and ask us any questions, or just have a rant. (if you read through you will see that I have had more than my fair share of major rants! ) We are here and will pass on any information we can.

WelshSue - Are you still around? Can I suggest you have a read through, too.

Choc thanks for the info. I will let you know how I get on!! I am seeing a man at the CAB about the DLA on Monday and will ask about the other appointment! DH is fuming and says we should refuse, but i am not sure thats the answer. Sometimes you just have to play their game, dont you, after all they have the power!

HAve a good weekend everyone!

Big hugs to Meltoadhall and WelshSue. Thanks PositiveAttitude. Ds isn't doing any extras at all and hasn't been since he was really ill with a virus in May. Didn't rejoin him in any clubs etc at all. The EWO never ever turned up nor has she phoned in spite of the fact that she made the appointment in the first place. It is all quite bizarre and as she didn't leave me a contact number, I am not going to chase her. Perhaps she was off sick and just left her appointments book at work.
I am just praying that he survives tomorrow and the rest of the week. He does 2 mornings and 2 afternoons in theory although he hasn't managed it yet. But we have been really strict this week and tomorrow he is going to stay in bed until it is time for school p.m and just do some drawing or listen to comedy CDs. Normally he would have watched TV, but as that engages more of the senses I am stopping that on the mornings of the days he has afternoon school to see if it makes any difference. He is really anxious about how his classmates are going to treat him and whether his head of house is going to grill him and ask questions again like 'How ill were you' or make comments about being 'tired'. Hopefully it won't happen although some kids will accuse him of 'bunking' unfortunately. I did send Head of House info from the Tymes Trust in the hope that he would understand more and also educate DS's peers so that they wouldn't make comments about bunking. But I don't think it has worked.

End of term can't come soon enough!

Hi there, I'm new to this thread and just wanted to introduce myself. I am 46 yr old mum to DD who is nearly 12 and currently under assessment for CFS/ME triggered by a virus in August this year. Prior to this year, she had just recovered from a two year illness which started with swine flu when she was aged 9 resulting in damage to her inner ear/balance mechanism causing vertigo, nausea, disequibirum and severe anxiety which took 18 months to recover from and involved her becoming extremely ill and bedbound for about 6 months. She was so ill she couldn't even lift or move her own head without help. She couldn't walk more than a few yards and then it was only with adult support. She lost all but one of her friends and when she finally returned to school, it took 6 months to gradually reintegrate her into the year below her chronological age as she had missed so much school. We went on a celebratory holiday to Italy this summer after two years of hell thinking she had beaten it, only to find that when we returned she fell immediately ill again with a virus and she has got steadily worse and is now, once again, housebound, anxious and suffering with severe fatigue, reduced mobility and inability to do most normal 12 yr old things. Her piano playing, drawing and writing stories keep her going but emotionally she is really struggling. Meanwhile, I am also home educating (via an internet school) my 14 yr old son with Aspergers, ADHD and dyspraxia who has just started GCSEs and is reacting to the stress with characteristic homework avoidance behaviour and loud shouty outbursts. My husband works 200 miles away and is under a lot of stress making weekends not a barrel of laughs. I am starting to feel as though our family unit is unravelling in front of my eyes. Sorry to lay such a heavy first post on y'all. Hopefully things will start to get better once DD is getting some proper management of her condition :)

Lindipop hope DS is having an OK week. It is so difficult getting schools and their friends to understand this condition. The School really need to get across to his classmates that he is not having a "fun" time at home but is actually very poorly.
Motherhen welcome to the board. I really feel for you - it seems as if you have already had a bucketload. I too have another child DD2 who is ASD and dyspraxic and she went to online school for 6 months, although she is now back in ordinary school. Re your DD, there is a school of thought that says that all these things she has suffered will have contributed to the overload which has ended up being CFS/ME. How far down the assessment process are you.

Keep smiling ladies

Hey there chocaholic. Thanks for your reply. Glad to hear your DD2 managed to get back to ordinary school. I firmly believe my DD's current difficulties stem from her previous health problems and may even have been present going back to the start of them. We had a horrid meeting with our GP last week where we literally had to beg her to do a referral to a CFS specialist service for assessment. She seemed to think a CAMHS referral was all we needed. She told us we needed to be patient and 5 years' down the road she would perhaps feel a lot better. It was devastating. :( DD comes into the "severely affected" category as she is unable to attend school and has limited mobility; she is also housebound which according to the NICE guidelines means she should be seen "immediately" by a CFS specialist. Our GP could not understand why we would want to "traipse up to London" just so a "professor with letters after his name" could tell us the same thing. :(

Hi Motherhen ... I wasn't clear in what I said, DD2 who has ASD etc doesn't have CFS/ME. That is DD1 who is severely affected. She was bedbound and gradually improved and started being able to go out. Unfortunately, she has now suffered a major relapse after an attempt to go to college for 4 hours a week :(. When DD1 was first ill we saw Dr Crawley from Bath who is very well known in the CFS/ME field. She does domicialiary visits (unfortunately one offs) but her guidance certainly got DD from being bedbound to being mobile round the house which was a huge step forward. Unless it has changed, she will go anywhere nationally and you can use choose and book to make the appointment (ie you don't need to get PCT approval).

Welcome Motherhen. SOrry you have had to join us here, though. It does sound tough with you at the moment.

CHoc how is DD1? Has she recovered any since not going to college?

Here DD3 only managed an hour on Monday before a phone call to collect her, then straight to bed and has done nothing since. Should be at college for 2 hours today, but we will see. SHe is so worrried about having to give up this course.
I met with the CAB Benefits advisor who was brilliant. Our appeal is now in the hands of the DWP. I have asked DD1's paed for another report to put some things straight, but have asked for her to send it to us first so that I can see if it will help or hinder. Not heard back from her yet, so dont know if she will do it for us.

Hi Positive I did mean to message you to see how you got on on Monday but my brain's all over the place at the moment. Glad the CAB advisor was useful. Hope you get somewhere with everything and get a better report from the paed. Sorry your DD isn't having a good week. Hopefully, if she doesn't push it, she will bounce back. My DD1 is really poorly atm. In a vast amount of pain, inspite of strong painkillers. Don't really know what to do for the best. I want to get the GP round next week (we will be running low on medicines by then anyway) but I don't know what to ask for. I think she's too poorly to go for an appointment anywhere right now anyway, although that will hopefully change. But I have no idea who it's best to see (and the GP is not much use here). I'm not convinced that an adult CFS/ME service is going to be any use at all. What with this, plus various issues with DD2, I'm totally stressed out atm - I thought it was supposed to get easier when they got older!!

Oh dear ((hugs)) Choc. I have a fear of slipping between the Paed consultant care and the adult care team here. Have you had any contact with the adult care team in your area? Could you phone AYME and ask what they can advise? They may know of a good team that you can access for DD1. When DD3 was taking painkillers more than she is now we found that she needed them to be stronger and stronger to have any effect. We actually had to stop taking any for a while, which was awful, but after a while the mild ones had the proper effect again. I still have to watch her intake because if it creeps up again we have to cut back to get the same effect. (IYSWIM)

DD has managed her college time today, which is good.

Hope everyone else is doing ok today. Nice bit of sunshine here to cheer us up!!

Hello all, not been around for ages - had a couple of house moves and some stuff which has left me verey depressed. DD with CFS was starting to do better with support from a brilliant home tutor, unfortuneately her school has now become an academy and wont buy in to this service anymore so school are tryign to force her to go back in every day for two hours and increase to full time by christmas which leaves her tired and irritable when shes at home as well as having terrible anxiety attacks about the subjects she is missing and the homework she can tdo. Reading back through your posts it looks like many others of you have also lost your DLA too - it seems very harsh when she had been on full benefit before to drop it to nothing at all. They tell that because she is fourteen she needs no more care than any other child her age - there is no need for me to stay home with her. Sure - I'd feel great about leaving a sick child at home alone all day

motherhen and meltoadhall - welcome aboard. Im told that one of the best specialists is in Bath but I've forgotten her name again at the moment! I think if things dont get any better I might try to go and see her with Lucy, although Lucy is doing better than this time last year. I am so afraid that having to go to school every day is going ot set her back. It has been really hard and the school called a child in need meeting stirred up by my Dad who stil insists she is putting it on. Luckily she has a good paediatrican and OT who have been very supportive.

Tonight both the younger girls have gone to their dads so i can have a night off and - actually I'll probably just have a nice cup of tea and an early night!

Anyone on here who wants to find me on facebook and have a proper chat about the children, CFS or anything else it would be great to hear from you - feelign very isolated again at the moment.