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.......

[Travelledtheworld]

Marking this thread.

[CFSKate]

Japanese study on 9-18 year olds with CFS.

[[http://investinme.org/Rituximab%20news-July13%2001.htm

This page describes the UK rituximab Trial project which Invest in ME is initiating.

Our advisor Professor Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL)]]

[PositiveAttitude]

Hello and apologies for not checking in on here for the past goodness knows how long!!
If anyone comes along in future and wants some help please feel free to message me on here. I am always willing to talk things through and help anyone with this illness.

A little background for those who dont want to read the whole thread. DD3 became ill with a virus the day after her 14th birthday in June, appeared to be well enough to return to school a week later, but was not 100%. When she returned to school (year 10) after the summer holidays we became aware that things were not as they should have been. She did not manage a week at school without having a day off when she just slept. Long story made short - by Autumn half term we withdrew her from school and she was diagnosed with CFS/ME. Her health went downhill to the point of her being bed/sofa bound for 6 months and could not walk on her legs for 10 months (she crawled) she did not leave the house for over a year. At her worst she could not swallow food, and choked when her throat muscles gave up during eating. Her feet were turning black because the muscles in her legs were not working enough to return the blood back to her heart.
She is now 19, married and pregnant!! She still has CFS/ME and has to pace herself to do what she wants to be able to do with her life. She has been training to be a hairdresser for the past 3 years. She chose this career as she said she could be a mobile hairdresser and do as much or as little work as she could manage. DD3 had always struggled at school due to dyspraxia and dyslexia, did not have education of any substance for years 10 or 11, so got to age 16 with no GCSE at all.
Pregnancy has been detrimental to her recovery, but she has a wonderful caring husband and I am helping her and we will continue to do so when baby arrives - February time.

Please feel free to message me, but be encouraged that there IS life after this illness. I found this thread invaluable when we were in the midst of this. This thread was the reason I joined Mumsnet. It was sucha positive encouraging thread.

[SweetChestnut]

Great. There is a bit more discussion there and it is reassuring to talk to other people in the same position. I think we need to keep in mind that children do recover and when they do they will catch up again. Hopefully your membership will be quite quick and look forward to seeing you there.

[pinkparrotpink]

Yes we are on AYME too, I have joined the LINK but waiting for my membership to be approved. Am looking forward to going on the parent type forum, my dd has found the AYME one so helpful despite being so young

[SweetChestnut]

Hi pinkparrotpink - Thanks for replying - it is great to hear from other people in the same situation. I really feel for you. I don't know if there is any ideal time to have this illness. Whatever age they are we feel sad that they are missing out on their childhood or teenage years. We are pacing as well but it can be hard. We were up to nearly eight hours a day but DD had a bit of a relapse so we have had to step back to six and a half for the next two weeks and then build up again more slowly from there. At the moment she is at school until 11.45 and then does a bit of work from home in the afternoons, gets some exercise like a walk, talks to friends on the computer etc. We found it difficult at the weekend to actually do the required amount - since school takes up half of it during the week it is hard to know how to replace that. Sometimes we might see a film or she will have friends round. We usually find that just as we get into a pattern the weekend or a school holiday comes along and wrecks it again. However, I would encourage you to try to stick at it. My DD seemed to be improving a lot and I think we then pushed it a bit too far, too fast and she fell backwards again. I am determined to try and keep it on more of an even keel this time and try and avoid the boom and bust. I have just joined another forum on the AYME website. You have to pay 20 pounds to subscribe but there is lots of good discussion and support there. It is really stressful as a parent as you just long for them to be well and be able to participate fully with others their age. All the very best to you and your daughter.

[pinkparrotpink]

Hi sweet - my 7 yr old has CFS, been ill since last Jan but only diagnosed 100% in April. We see an OT locally who works for the Bath team. The pacing is a nightmare, my dd has 5 hours of red time a day but keeping at that seems an impossibility, we always go over no matter how hard we try. I have been feeling very low worrying how dd is missing out on so much just lately but reading your post has made me grateful that she is ill now without the stress of exams, that would be just another added pressure to add to the mix & there is too many already!

[SweetChestnut]

Letitsnow9 - Many thanks for that. You are quite right that you can always catch up later. When DD was first ill I went into the school with her to explain and her head of house said something along the lines of we'll need some 'tough love' here and that universities may not understand that she had been ill during these important years. I think he was of the opinion that the illness was all in the mind and that he could scare her into getting back to school quickly. DD has always been a very conscientious student though and certainly wasn't slacking like he seemed to think. Anyway I think he sowed the seeds of anxiety for us both. I have since read other posts where people seem to be doing just fine at university even though they were unable to do their full complement of GCSEs so I am feeling a bit more reassured. Thanks for your good wishes and all good wishes to you as well.

[Letitsnow9]

Sweetchesnut, I just clicked onto this thread. I know gcses are important but if there's one thing I've learnt from this illness is exams results aren't everything. Much better to take things slowly, you can always catch up if need be later on (often places understand why someone doesn't have as many exam results as they would of done) than to try and recover from mega set backs. I hope things improve soon for your daughter

[SweetChestnut]

Just in case anyone is checking I thought I would let you know where we are this half term week. I feel the need to offload some thoughts and hope other people might want to share experiences.

I have been finding it hard to feel positive and have been trying to hide that from DD.I had possibly my worst birthday ever - didn't feel like celebrating at all and feel like crying all the time.

We went to Dr Crawley's clinic in Bath where we usually see Dr Velleman who is the clinical psychologist and very understanding. She says that nearly every child has a crash from time to time. She suggested that we cut back school to the level DD was comfortable with (staying for 2 and a half lessons a day) and then start building up again but more slowly this time, adding just 15 mins on every two weeks. I guess we all got excited when she felt quite good for a few weeks and pushed it too hard. It is disappointing though as I had visions of her staying beyond lunchtime by the end of this term but that won't be possible now. She also suggested that we start off year 10 where we left off even if DD feels much better over the holidays. I am therefore panicking again about GCSEs and how to deal with them. Dr Velleman suggested that we cut them to the minimum the school will allow at the moment but I am worried as DD is such a good student. It seems so unfair on her and I am worried it may affect her whole future. I just don't know what to do for the best. I also got really upset with other parents discussing all the gcse options when we can't see more than a few weeks ahead at the moment. Also the cognitive fatigue side of ME is far worse than the physical side for DD which makes it hard for her to focus for too long. I get really scared about this doing permanent damage.

We also went to see Jo Dunbar, the herbalist, whose name I got from these threads. She was lovely and very understanding. She said that the herbal remedies are not an instant cure but will hopefully help clear and support the immune system. We also discussed Perrin Technique and she felt her herbs could do a similar detox job but in a gentler (and less pricey) way. It is still in the back of my mind as another possibility. Does anyone have experience with it, I wonder? I also ready about Airenergy machines which are very expensive but some people report good results with. If anyone is reading this I wondered if anyone had any experience of these?

Anyway if anyone's child is suffering with this horrible illness then I feel for you. Would love to hear about other peoples experiences.

[SweetChestnut]

Wow - Thanks - I am really impressed to get a reply so quickly. It is lovely to hear from someone else. Your experience sounds very similar to ours, especially with regard to the recurrent sore throats leading up to this, DD had so many antibiotics (as well as homeopathic remedies) because I always felt pressured to get her back to school and keep her attendance level up. I can see now that this wasn't the right thing to do but I feel that teenagers (and us) get put under so much pressure nowadays to 'perform' for the school and achieve results for the league tables.

Unfortunately we are not near to the school so it isn't realistic for her to just do essential lessons. She is just doing what she can and gradually building up her time as they suggested in Bath. She started by only staying until 10.00am back in January so I guess she has made progress. I am worried that we have had two set-backs this half-term though where she has had to have about three whole days off plus the weekend. She then seems to be able to pick up where she left off again but I am still not sure we are doing the pacing properly and she hates keeping the energy charts. We are going to the clinic during half-term so we will check this with them then.

I have just had her put on the SEN register with a medical need and the Individual Needs Officer at her school said that he had suffered from it as well (as has her English teacher) but I still find that school are not very good at helping us with work for her to do at home. The general consensus from them seems to be not to worry too much this year because the GCSE courses will be self-contained. I am worrying though!! She will be really disappointed if she has to drop subjects as she is likes to do well (sounds familiar) and doesn't want to be behind her friends. I started her with a maths tutor a couple of weeks ago to try and fill in some gaps as her levels have dropped naturally but she is not too keen. She really wants to build up her time at school. However... I think we are both in the process of having to get realistic and I got frustrated this week with yet another set-back which then makes her feel guilty which is the last thing I want.

Luckily she has some lovely friends at school who are being supportive. One has just come to stay the night so just off to make dinner.
Hope you will keep in touch and I hope all goes well for you and your daughter. It really is a stressful and soul destroying illness for everyone.

[Year11mum]

SweetChestnut. I'm in EXACTLY the same boat, though we're three years ahead of you.
My DD was ill of and on through Year 8, and was generally diagnosed as having tonsillitis, was prescribed antibiotics and soldiered on. If only we'd known that the antibiotics were not really having any effect ( and indeed were adding to her malaise), she "recovered" by herself from what was clearly viral ( despite the white spots on the back of her throat) and what she really needed was a lengthy period of time off school to recover.

We went to see Dr Crawley too who was lovely, but DD found the pacing a little unrealistic. She insisted that she couldn't miss lots of school and instead we came up with an arrangement which meant she missed "non essential" lessons, which was do-able because we live very close to school. Just meant she missed the "fun" lessons and I wish I'd had the sense to do what you and your DD have done and insist that DD took a big break from school. I'm at fault too because I was concerned that year 9 was very important and to miss much of it would impact on her GCSEs but I'm sure that wouldn't have been the case.

Anyway she has soldiered on, with periods of coping, a rush of adrenalin when exams approach and then a crash after them. Esther Crawley would not be impressed. She now sees a sympathetic GP every couple of weeks who has prescribed her with amytryptline as well. Her dose is now up to 75mg and seems to help her muscle pain and sleep difficulties a bit, but she has put on weight which may be a side effect, or may be a result of no exercise and eating of comfort foods to get her through exams etc. Probably a mix of both but enough to make her determined to cut it down and out after current academic year.

DD is now in year 12, so one week into AS exams. She got her GCSEs and did very well. School made her drop from 10 to 9 subjects ( slightly to her and my annoyance because it was clearly driven by her latin teacher not liking having to mark work out of time rather than concern for her. Dr Crawley had suggested that we agreed with school that homework could be done over the weekend rather than on week days which helped DD but wasn't fully embraced by many of the teachers, particularly the Latin one). (She ended up doing 10 though because being in set one for Maths the girls did Additional Maths). She managed OK. A few friends rallied round to copy notes if she missed lessons but she managed to attend most lessons for the GCSE subjects. She worked through the holidays to catch up as well. And ended up with 10 very good grades.

AS year has been a bit easier. I think as she's got older she is able to control things a bit better. It helps only doing 4 subjects for AS, which are her favourite subjects, with study lessons built into the timetable, which mean she is home at lunchtime on wednesday and Friday and sometimes comes home for 2 hours on a Tuesday. It does mean, though, that she continues to miss the "fun " extra curricular things which take place in the lunch hours, and it does mean that she missed out on being nominated to be a prefect/house official earlier this term. A teacher said to me at a school event when I mentioned DD's "oh but [DD] isn't often in school and doesn't go to many clubs" and clearly knew nothing about her illness. All that sort of thing still upsets DD.

She does get depressed about it all, I know, though fiercely argues that any of it is in her mind. I do try to explain that while the CFS is clearly a physical illness, part of its effects will quite understandably make her depressed. She's down to see someone for CBD at Kings, but that's quite a way for us and we've had to cancel several appointments - the thought of driving and hour each way and having to go over all her symptoms and concerns is just too exhausting for DD to contemplate most of the time.

I am wondering about giving the Lightning Project a try, but for now DD is just trying to get through her AS exams.

Sorry, a huge ramble there, and not much advice to you, but I'd love to use this thread as a way of sharing experiences/getting support.

[SweetChestnut]

Hi there - just wondering if anyone was still interested in adding to this thread. I must admit that I have read it and found out lots of good ideas from it but I have never actually posted anything before so I am a bit nervous about it. It would be great to share experiences though. I get pretty despondent at times.

My 13 year old dd has had CFS/ME since October last year but had a couple of years of on/off illness leading up to it, always with the same symptoms - sore throat, dizziness, inability to concentrate, poor sleep etc. When she is well she does very well at school but when she is ill she just can't cope. She has been part time since she came down badly with it and is gradually building up her time - she stays until 12.15 now. I got us referred to Dr Crawley after reading this thread and pacing has been useful although she still falls back from time to time. We are currently having another set-back! She is also taking amitriptyline (low dose) on Dr Crawley's recommendation which has helped ease some of the brain fog.

She is starting year 10 and GCSE's in September so I am getting very worried about how we will cope. Is anyone else still in the same situation? Would love to hear from you if you are.

[pinkparrotpink]

Hi picture - I have a 7yr old dd with suspected CFS, seeing a someone from Esther Cawleys team from Bath next week. I too found this thread comforting, we could resurrect it.

[pictureonmywall]

Hi out there, just wondering if this thread is continuing anywhere ... I have a 14 YO son with PVFS and I found it very comforting to read your posts. Best wishes to all. x

[Pictureperfect]

Hi, sorry to crash the thread as I'm the one with ME rather than a parent to a child with it but I wanted to post this link incase some of you haven't seen it. My friend Emily had long term very severe ME which sadly took her life :( before she died she achieved her biggest goal of publishing a book to help those with severe M.E and their carers. I know Em was my friend but even if she wasn't I would of been amazed with the book, I just wish it had been around when I first got v.severe ME as it would of been a huge help to my parents on how to help me best. It's not expensive but if your child is a SAM with ayme then you get it at cost price. I got myself a copy but also brought a few copies for my hospital

The link is www.severeme.info/

[cestlavielife]

my dd's dianoses include "probable chronic fatigue syndrome" but i am still not sure it totally fits. please advise? she is 12, nearly 13

• dizziness and nausea since june
  
• not really fatigued, just dizzy and nausea
  
• manages to still stay up late, eat, get out of bed move to sofa. doesnt ask to go to bed early.
  
• can go out sometimes but when needs to stop is because of feelin dizzy and sick - not fatigue
  
• stumbles with the dizzziness
  
• has abnormal MRI with a nodule of grey matter and cerebella hypoplasia (she was a late walker) plus stenosis of aqueduct. but no clinical signs of raised CSF pressure; no papiloedema of eyes indicating raised pressure (which could come with the aqueduct thingy)
  
• visual field test show right superior quadrantanopia (quarter of visual field missing, this is being repeated next week. this implies neurological issue and damage)
  
• retching and nausea when upset/anxious eg when being haassed by doctors or siblings (!) but psych assessment couldnt decide if primary diagnosis was psychological - didnt rush to offer anti depressants or anything anyway - offered her chance to talk but she said she need to talk as her symptoms were physical and it wouldnt make any difference
  
• looks pale and grey most of the time
  

has missed school since june 2012. attends a small tutor group up to ten hours per week [which she likes, likes the teacher etc] but eg today i took her tho she said was dizzy, feeling nausea; but 40 minutes in the teacher called to say she wasnt coping and had her head on table. came home and is watching tv

is this CFS?

[optimisticmumma]

Happy new year to all who use this thread intermittently. Hi particularly to you Roundabout. My Dd had CFS for 2 years and is now fully recovered 3 years later due to lightning process. Her recovery was immediate because, IMO, her virus had gone and she was left with the aftermath that LP helped her deal with. She got 13 GCSEs is now doing a2s and has 4 offers of Uni. She is going to take a year out though to catch up on all that ' growing up' time that she missed.
I just wanted to say that there is light at the end of the tunnel so keep positive!! Hi to all the oldies: dwardle, positive, 21again....you were all so vital . Xxx

[roundabout1]

Spent ages reading through this thread. So pleased your dc's have recovered so well. DD has suspected chronic fatigue just been referred to a specialist clinic & reading through this has given me some hope & great advice!

[katsh]

Hi - Hello Dwardle ! I too am an old member of this thread. I'm sorry for those of you who are now looking after children with CFS. Dwardle - I am delighted to hear about your dd. What great news! I want to share the good news of my dd too. She was ill from she was 7 until she was almost 10, but has now been back at school full time for 12 months and is very well. She's thrown herself into school life and has had no relapses at all. Hang in there if you are in the midst of it. It will get better. This thread was the thing that helped me through so thanks to dwardle, positive, optimistic and twentyone. Much appreciated.

[CFSKate]

This came out a few days ago, it is the update to the Canadian Guidelines from 2003, there's some information in it about children with ME, and how it affects their education.
www.hetalternatief.org/ICC%20primer%202012.pdf

[dwardle]

Hi to anyone out there who remembers me. Just wanted to post that people do do do get better from CFS. DD has today got into her 1st choice uni having suffered for the whole of her 2 yrs gcse course. She only got 6 GCSEs inc art & drama and is now off to read History at a great uni. Keep hoping as things WILL get better. Much lovexxxxxx

[bobala]

a positive message for those still in the depths of the bad bits - my 15 yr old DS who is at the end of his 5th year with ME and coming out the other side today was awarded the Managers player of the year trophy for his football team! Prior to ME he was an excellent little footballer and won lots of awards, he has really felt it the last few years, not being able to play a lot of the time and not being at his best when he has played a short bit of a match. Today has been an amazing boost for both of us, he is finally feeling that he is getting back to normal, and I have barely stopped crying all day! So - there is hope.....keep going all you parents and children.

[Banatyne]

Hi, Im new to this so apologise if I get this all wrong. Its just that I feel quite aggrieved after a visit to my Son's paediatrician yesterday.
My Son is 9 now and at his emergency section birth we both became very ill after contracting Strep b. To cut the story short we have both suffered years of illness, infections, fatigue,, etc and everything else that ME brings with it. After millions of tests and attending hospital both as in patients and out we were both eventually in 2010 diagnosed as having ME. We have both recieved excellent care from GP's, Consultants, and many other medical proffessionals who have cared for us. UNTIL YESYERDAY.....
We attended my Son's 3 monthly check up with his pediatrician (not the one who diagnosed him). During the meeting the Dr said. "I'M NOT CONVINCED HE HAS TRUE CHRONIC FATIGUE SYNDROME BECAUSE IT US GOING ON TOO LONG". !!!

Err hello, isnt it a lifelong condition, my Consultant told me that I would highly likely have this condition fir the rest of my life mainly because I have had it so long. However, there was more hope for my Son who they hope will improve to a good level due to his young age.

Anyway, I was so taken aback by his comment that I never asked him "what he thought it was then"? BUT he went onto ask me if my Son displayed any signs of obsessive disorders!!!! I staunchly said no none at all he is pretty laid back. He also saud that quite often lack of sleep can cause depression ?????? Was he intimating that my Son was suffering from some kind of psychiacyric disorder?? Yes I believe he was.

Luckily we have recently moved house into a new area and My Sons Nurse has asked if we would like to transfer to the local hospital and pediatrician. Initially I said no we are happy with our current Dr BUT today I will make contact with her and ask her to transfer us.

I have attended a CFS/ME Unit near to where I live and havd had excellent care which has improved my condition to a level where I am able to function better. My Son has also had good care and support from his nurses that visit him at home and has also improved greatly. BUT I am now clear on his pedisyricians views on ME and I have to say it has left me feel extremely uncomfortable and disapointed. I have several family members on my Mums side who suffer from ME so I know quite well what it is and how it effects you and to try and change my Son's diagnosis at this point is quite scary. What direction is he intending to take his future care ??

[PositiveAttitude]

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?