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.......

Thank you, Katsh.

Sorry I have not been around. DD is struggling but doing "OK". She is managing to keep up with the work for her course, even though she only does 6 hours a week , not sure how, but apparently she is!!

I will now be awol for a few weeks again, (going into hospital for surgery on Saturday) so keep your chins up and remember that this is always the worst time of the year!!

Positive hope everything goes well for you. Hope DD continues doing Ok too. Dwardle and Katsh hope your DDs are on the up.

My DD was 19 last weekend! Doesn't seem possible. She is doing pretty well on the whole atm.

Hello all. Just wanted to let you know that dd and her cake sale have made it into Cheers so you may see her there! She was extraordinarily excited by it . also have heard on another thread that positive is through her surgery, but has to wait a few weeks for the results. Dd is a bit floppy but I think picking up. Saw the dietitian today, and it was encouraging that despite her gastro bug she has put on some weight in the last 3 months. I am going away on a residential study weekend this weekend - I can't quite believe that I'm going to have time away from the family !!! Got to say I'm looking forward to a bit of R & R even though it will come in the guise of study. Hope you are all ok.

katsh I read that article the other day and didn't twig, in spite of the fact you'd told us that you were doing it and I think you mentioned DD was going to be in Cheers. Just been and had another look, your DD is so sweet and did really, really well (with Mum's support of course!). My DD also has a (not terribly flattering) photo in there as she is online services manager until the end of the year (bottom of p2).
I've just come over from the other thread on Positive ..sounds like she is doing OK which is good.
Hope everyone is well. Our heating has given up and it has been a very cold week!

Hi,

Can anyone point me in the right direction for any similar threads on Juvenile Fibromyalgia???, (I know its a related condition, as I have ME & FM diagnosis myself)

I've been worried about my own DD(8) for a long while now & though have mostly managed to keep on top of her symptoms with diet & supplements such as Spirulina, but the older she gets, the better she explains things & I think its something I really need to look into

Currently I'm torn between thinking her problems, bar IBS, Hyper-mobility dx & food chemical intolerances are "normal" & worrying I'm perhaps projecting my own symptoms onto her & thinking I need to push my GP & get her a Rheumatology referral?

She can be noise, light sensitive, gets upset because her mind blanks on things she knows well, can't remember how to spell simple words etc & then panics, something her teacher brought up at a recent parents evening, & I see her do a lot at home (sad) also whilst sitting reading through her work afterwards, she was stretching & complaining her back was aching, mine was killing me too, yet I always make a point of playing my symptoms down in front of her & hadn't even mentioned it, so she isn't mimicking.

thanks

Hi rockinhippy - can't help I'm afraid, I've certainly not seen anything on here. As you say there are huge similarities and overlap and you'd certainly be welcome on here but you could always start your own thread and see what happens.

Thanks for replying :), I think maybe I will post one later to try & gauge what is genuinely "normal' with kids that age & forgetting things they have learnt & noise sensitivity etc, she's very bright & now copes well, but sometimes comes out with things that get my alarm bells ringing again

Also, whilst I'm here :) ....it might be something you alreaady know about, but I will share just in case in might be useful to someone on this thread

DD didn't recover properly after Pneumonia, part time School etc, Doctors talking of Juvenile ME, which as you can imagine scared the hell out of me, as I said I am a sufferer myself, & was frantically looking at what of the natural stuff I take that would be safe for a 5 year old...........

I found out Spirulina was safe, gave her 4 cut up compressed pills a day & within a week she was like her old self again, back at School full time by th second week & hasn't really looked back since :), she does still have some symptoms which wax & wane, but nothing like as bad as she was, but still a bit of a worry ;(

I also swear by it for myself, & I've also found Manual Lymphatic Drainage helps a lot too, if you are lucky you can get that on the NHS via a pain management center & the likes
no miracle cure of course, but its natural so might be worth trying

thanks again

Hi, how is everyone? Rockinhippy how is your dd? I'm interested in the spirulina. What is it and how did you know it would be worth trying? My dd is 8 and has been ill for 18 mths now, and I am feeling increasingly frustrated with it all, and therefore welcome any new ideas .
We are just plodding along here. Hope you are all doing ok.

Hellooooooooo . So has everybody got better then?! Hope you are all coping with the snow.

Hi Katsh ..I'm still here. I did look for the thread a couple of times but it seemed to have disappeared totally. How is DD? Did you find anything out about the spirulina? My DD is OK most of the time. She is doing a drama class on Saturdays which she loves (drama has always been her "thing"). It usually means she is very tired for the rest of the day and into Sunday but this week what they did was particularly strenuous for her and she has been really wiped out ever since. It is then that I realise how far from being "normal" she is. I suppose because we don't have the educational pressures that the rest of you have, you kind of get used to how things are and that is normal for us. Anyway, hopefully she will be on the up again.
Positive if you're lurking ..hope you're OK, plus DD of course.
And everyone else ....hi!

Hi, yes I am around too.

Sorry DD is still struggling Choc. It is such a long road isn't it and I think we sometimes forget what "normal" teenagers can, and should be doing. We become a bit blinkered.

Here, DD is struggling. We are having a major issue with her wanting to "get away from it all". But by "it all" she really means her illness! So, whatever she does, it stays with her, obviously!! She is looking gaunt, losing weight, getting more and more tired and refusing to believe that she is still ill. She is just about managing to keep up with her half time (6 hours a week) on the course, but basically nothing else.

Me, I am also struggling. Results were all good, so no radiotherapy or chemotherapy needed, which is brilliant. However, its taking me ages to get back to normal. I am not expected back to work now until January, which is great to know that I am not letting people down and can take my time. Its just very frustrating!!

How are things with you Katsh?

Positive brilliant news about your results, you must be so relieved. I think it's easy to forget what a trauma an op is to the system and there was a massive amount of worry along side yours. It is bound to take time to recover, so just take it easy now the pressure is off and relax a bit. Sorry DD is struggling ...it is so hard sometimes isn't it. Don't you wish you had a magic wand!

Positive - I'm so glad that your results were ok. What a relief. I posted on another thread but hope you'll see this one as I'm thinking of you as you try to recover in the midst of family life and Christmas. I'm really sorry to hear your dd is having a rough time - I can't begin to imagine how frustrating CFS is for a teenager. You won't be letting anyone down by taking proper recovery time. I know ( from experience) how hard it is to do, but you really must! Lecture over choc - thanks for replying! I'm glad to hear your dd is making it to her drama - but it's so hard when you have the sudden realisation of what "normal" looks like.
DD has picked up a bit here. We had to go right back down again to very low red activity, but have been able to build on it for the last 2 weeks. She's managing 45 tutor time at home each day, and a little walk and the car for school runs, so that is all better. I'm taking her to the local theatre for a pantomime this morning. Homestart arranged tickets, even though they no longer visit us. I've just realised it will be the longest that she has been out of the house for 5 months ( only about 2 hours)so I'm feeling quite nervous. She's excited but worried - always feels people are looking at her and wondering why she's so small, pale and not at school. Hopefully I've allayed those worries and we'll have a great time.
Good to hear from you. Take care.

Hi everyone
I haven't been posting here as am not sure what to contribute. DD is so much 'back to normal' that it feels like everything was a horrible dream. I still read your posts - I guess if I can help with anyone's questions about specifics, then I will. I do hope you are all okay and coping with the run up to Xmas. Katsh - such good news about the panto! Hope it went well.
Positive - hang on in there and try to accept that you DO need to rest properlyI will be in touch! Choc - hope the week picks up for your dd.

Dear all, so sorry that I haven't been able to post lately - have had a vile lurg which has been joyfully passed round the entire family, it feels like it has been going on since half term(!) nasty throat, cough etc, so have been very below par.. hope you are all doing OK, it has been a very hard time of year with all the lovely snow and ice, and the children seem absolutely exhausted and ready for a break ( or is that just me!) Daughter has done so well this term, there have been the odd 'blips' but she has showed alot of determination and her monitoring grades show this. We had the CAHMS referral and she is now having CB therapy to help her with her panic attacks and managing her state of mind. The Paed referral included more blood tests, which thankfully have come back negative, but they are holding the post viral fatigue line, and she does still get VERY tired, still in bed by 8 30 most nights and finds it hard to sustain any kind of stamina. We are just holding the line with her, trying to support her and give her plenty of time and space.
Hope everyone else is doing OK, I always think November and December are about survival, doing what you can and then resting where possible, would love to hibernate!

Hope you're feeling better Guineapiglet and that everyone else and their DCs are OK ...busy time of year and lots of nasty bugs out there atm. This thread has been very quiet lately ...had to go back 3 pages to dig it out. DD has been a bit wobbly although she's well enough in herself. Think it might be because the GP put her on a very small does of nortriptyline because of her excrutiating headaches. It has helped no end but she has had a huge reduction in the amount she eats which I think have affected her energy levels. She will eat, but only tiny amounts. Not sure what best to do about it!

My son has a meal replacement drink prescribed by the dietician -its a vitamin and stuff enriched milk drink so he doesn't feel like he is 'eating' at all -just having a drink, but it helped him put back on the stone he had lost and means that on the mornings he does go into school he has at least had some kind of breakfast.

Thanks. DD can't tolerate more than very microscopic amounts of cows milk so not sure that's an option. I have been whizzing up smoothies using goats or sheeps milk yoghurt and they seem to go down a treat though.

Yes it's funny as my DS has never liked milk in any form but after experiments with various meal replacement type drinks this was the one he much preferred so finally at 14 he is getting a good dose of milk!To be honest, other than the drink he pretty much eats whatever he fancies as I would rather he was eating something than be funny about the nutritional value of endless pizza! At least he loves fruit and often invents his own smoothies - we managed to get him through the not eating bit sufficiently so that he has still had the last 2 growth spurts -they were worried he may not have enough energy to do the growing and so he was worried he would be for ever 5'4, which encouraged him to eat something!

Hi to everyone - have lurked from time to time but felt I should keep in touch.

To give you all hope - DD is back to her normal self. She is happy and enjoying life, and CFS doesn't feature in our lives any more. She did struggle with an eating disorder for a while this year but is doing really well now. I think she will always struggle when she gets anxious or worried but seems to be dealing with life well. She does see a life coach every week and this reinforces the positives and helps her keep the negatives in perspective. We keep a close eye on her and make sure she eats well.

Choc it is important for your DD to eat - have you tried Nestle's Build Up? Most chemists and some supermarkets stock it and I am sure it could be mixed with goats milk. It is full of nutrients and calories and DD drank this throughout her CFS. Keep getting the food into her - her energy levels will slip otherwise.

I hope you all have a peaceful Christmas and Happy New Year with better health for those DCs who are struggling. xx

hi 21again - nice to see you and glad to hear how your dd is getting on. I just wanted to wish you all a very Happy Christmas. DD is staying steady at the moment and compared to last Christmas she is so much better, so this year I'm actually enjoying Christmas ( so far ! ) . We have booked to go out to a local restaurant for lunch today, and I am feeling ridiculously and disproportionately happy about it [fgrin . As my dh says, one of the upsides of dd's illness is that the small things make us happy Big Christmas hugs to you all, and thanks for the support over the last year. xxx

Happy Christmas from me to everyone too! You are right Katsh - this illness does make you appreciate the little things. Hope you all enjoyed your meal out. Twenty One Again glad everything is going well for DD. Thanks for the advice about Build Up. Unfortunately, having scrutinised the ingredients list, all these things seem to contain some form of milk powder so no good for DD. Her eating does seem to have picked up a little anyway, so we'll see how we go. Hope all the other DCs are doing OK

Hello and Happy New Year everyone. I hope you've all managed Christmas ok. We did well until dd picked up a flu type bug which we've all had, so I've a very weak and exhausted little girl again, which is tough for her ( and us). Tomorrow is dh's last day off work, and I'm rather dreading being left housebound again. I hope that all the other children represented on this thread have avoided the seasonal illnesses and are doing alright.

Hope your DD is feeling a bit better Katsh and that you are managing without DH.
I just wanted to wish you all well for 2011. I do lurk on this thread but with a DD who is 'normally well' feel that I have little to offer now. I never know if it's good or bad to hear of continued recoveries!!
Anyway, may 2011 be the year of recovery for all who are still struggling with this nightmare illness.

Hope you are all well, so sorry to hear about your ordeal, positive.

DD was doing well on pacing and melatonin to help her sleep but a nasty cough and christmas excitemnt seems to have sent her back to square one again - it's so frustrating.

I had a nasty bout of pnuemonia at the beginning of Dec which has left me very run down and with a lot of symptoms similar to DD so I can really sympathise with how she feels now.

Nothing else new to report really, the spirulina sounds interesting, I think I'll experiment on my self and see what happens!

Love to you all, cuppycake