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.......

[nickschick]

Theres no way in this world hed see somebody the paed referred us to 'reflections'(im not sure if thats just what we call it its CAHMS I think -to do with counselling) and ds flatly refused it.

To be honest im not convinced entirely that L.P is for us - I know a lot of you have had amazing results but after discussing it with my GP and others I dont even think if I was totally 'into' it it would work for us,partly because Sam isnt 'open' and I dont think dh would be supportive.

I dont know where we will go from here -the next lot of blood tests will help us decide and maybe the 'fatigue' specialist will come up with something.

[PositiveAttitude]

Hope you are all having a good week.

DD3 has been good here. Not crashed as much as we anticipated and has made it into the unit both times this week. Legs a little wobbly today, but on the whole the best few week for 20 months!

Having a total panic though as DD2 has been diagnosed with glandular fever, which was DD3's trigger for CFS/ME. Dr has been brill, yet again, and had already thought about why I might be slightly panicked about this. He reassures me that DD2 has been the worst case that he has seen, so we would not be that unlucky again! My head says it will be fine and she will be well in a few weeks - heart is a different matter and I really could not face all this again!

I will try and listen to my head!

Very interesting reading all the LP bits and pieces. Keep them coming. I dont think we would end up going down that route, but just some of the little snippets I pick up are good theories and I can see the benefit in them for DD3.

Must dash, tea is ready.

[dwardle]

Good news about dd3, POA - yikes about dd2 I'm for going with your head at the moment! Send you big cyber hugs too.

dd Has had a couple of setbacks this week but has met them with solutions and 'I cans' rather than I can'ts! This is a major step forward and part of the LP toolkit! Am very pleased with her and have told her so.
Still feel that explicit praise for successes is very important for all our dcs. Am sure you have all been doing it too

Nickschick - how old is yr ds?

[optimisticmumma]

That's fantastic, Dwardle!! My DD is looking awful but there's no talk of her taking days off! She's just putting one foot in front of the other. She has been at school until 5.30 every day this week doing coursework that can't be done at home. I think your DD has turned a psychological corner in that she is putting into practice what she has learned!

PA - go with your head! You poor thing, how unlucky to have glandular fever again. I'm sure your doctor is right....

Lots of love to everyone else....x

[dwardle]

Thanks optimistic
Will your dd get a respite when coursework is over?

[optimisticmumma]

I hope so, dwardle. I am trying to be as supportive as poss with offers of picking her up etc. (She goes to next town by train. It's about 10mins on train and 10 min walk).I just hope she is OK to attend her DofE training day on Saturday. When I think about this time last year I can'tbelieve I have just written that!
DD reaches her first anniversary of doing LP next week!

[nickschick]

op mumma your dd is doing well......

Dwardle I agree with the praise thing I try and find good in every bit of the illness even last week having bloods I was saying to him we are so lucky to get this done any little thing will show up we wont have to wait for you to get symptoms if theres something wrong we can find it and fix it.

P.A ds had what we suspected was m.e had lots of blood tests nothing showed up then he worsened to quite an extent so more tests were done (18 months apart) then glandular fever infection showed up....so to my way of thinking its likely ds had m.e then got g.f on top thats why hes been so poorly for so long.

My ds2 is 14.

Hope everyone manages to enjoy their weekend.

Ive been taking some extreme steps to avoid ds2 becoming too tired such as not going to the yearly fair but understandable....encouraging rest even when ds seems ok, stopping friends coming in quite so often so he doesnt have to brave face it.

[optimisticmumma]

Keep going, Nickschick, it won't last forever...If DS won't go down the LP route have you tried seeing a herbalist? We saw Jo Dunbar who did seem to have success with the physical symptoms. As far as LP is concerned I do think certain DC (My DD included) have to be fairly desperate to do it and I think 14 is pretty much the minimum age to 'get'it.

[optimisticmumma]

Sorry Nickschick - just read your post about LP properly . I just want to say if you don't mind, that it is not in any way wacky or weird! It is up-to-date brain science! IMHO GPs don't have a clue about LP and not much of one regarding CFS - sorry if that sounds hard, but unless your GP has actually attended LP training he can't really comment and may be putting you off something that could be beneficial to your DS.

[nickschick]

Nooooo I dont think its wacky and nor does my G.P,He has actually looked into M.E a lot more as his only experiences of M.E were when he was a medical examiner for the dhss and people would claim they had M.E yet live in perfectly co-ordinated homes where everything was just so and they lived alone....not saying people with M.E cant be colour co-ordinated or anything but the people he saw obviously all had other issues going on as well.....so for him to have ds2 diagnosed and so young of he finds it 'interesting'.

The G.P said that for people to benefit from L.P they have to recognise they are 'ill' and want to get better and be willing to believe that L.P can help them,firstly ds isnt in any place in his mind for that so secondly no good practicioner would engage him with it.

With LP ds2 wouldnt benefit bcos he isnt open to any sort of help,Dh wouldnt be very supportive and until he can believe he is 'responsible' for 'spending' his energy nothings going to work fast.

[optimisticmumma]

Oh, fair enough then!! Sorry if I came over a bit stroppy...sounds tough for you .Boys! eh? I have 2 of my own and maybe they would be the same.
Have a good rest of the day.

[nickschick]

noooo not stroppy at all.

If you know somethings worked for you then your right to urge others to try.

,I appreciate any advice and support.

[twentyoneagain]

Hi all, haven't beeen around much lately but have caught up with your posts now. Glad to see things looking up for Positive and Dwardle. Good to see you back Nickschick.

DD is struggling and this is a really hard one to deal with. She is experiencing problems with three of the girls at school who up until a few weeks ago were her best friends there. They are now ignoring her and excluding her and she is so unhappy and finding it cvery difficult to deal with. I know she should move away from them and establish other friendships but she seems unable to do this and is not coping at all well. She doesn't know what triggered the problem (or so she tells us) but I am worried about her. She is very down and has two exams next week which I think she will not find easy to deal with. Any advice would be much appreciated, I think we will have to get involved but how do you deal with this? We don't know the parents but on one occasion I had to leave a message for one of them and never received an acknowledgement or response which makes me think they probably won't be too bothered. It is easier to deal with when they are smaller I think, but DD doesn't want us to become involved although, for the sake of her health I think we have to.

What to do?

[PositiveAttitude]

OH 21again, I feel so sorry for your dd, who has come so far and done so well. This does seem to have been going on for a few weeks now. I really dont know if I can be of any help. It is bad enough when a "well" dc has friendship issues, but I know I take everything so much harder with DD3, after all she has been through, so I understand your concern.
DOes she have a personal tutor at school that you could contact? Maybe she/he will have an idea what is going on, or maybe she/he could have a quiet word with your DD and she may open up more to someone else about the root cause and it can be dealt with. If she knows what has caused the rift, then it is easier to get it sorted. I have always found the personal tutors to be really understanding and even if they dont know what is going on, they have always been positive with my DD1 and helped her cope with these issues. (She did not have CFS/ME, but was a very sensitive girl) Girls can be absolutely HORRIBLE and sooooo hurtful to others.

Sorry, not much help I am sure, but I hope it is soon sorted and your DD can do the exams this week without worying about these girls.

Good luck

Here DD continues to do very well - for her! She is going to the local college to have a look around on Monday. She is soooooo determined to get there and do a childcare course. We are going along with it all at the moment, but have doubts that she will be well enough by September. We do not want to be negative with her at all and so are letting her do all the preparation, but have a "back-up" plan if all goes belly up!

Hope you are having a good weekend.

[nickschick]

My ds2 can be quite unforgiving when it comes to friends and although hes a very popular kid he has a few friends he keeps close to him,I think when a child is ill as ours are and tiredness and exhaustion is just the 'norm' for them the regular ups and downs of friendships become a more intense feeling for them.

Girls I know can be very bitchy and I think to veer from the norm in any way be it healthwise or dresswise or any other way makes you stand out and kids like ours dont want to stand out.

Your poor dd x

Positive attitude - thats great your daughter has an 'aim' and I can perhaps advise you a little if she takes NVQS she can do these for as long as they take her to complete.

[dwardle]

Oh 21again - really feel for you. Totally agree with Positive's advice. At dd's school, it is her form tutor - but you will know who in your dd's pastoral system.
Think of it from school's point of view. If you dd has a problem, that may affect her learning that they Might be able to help with, would they want to know? Answer is YES! (well, usually, I hope
Also was thinking about teenagers in gen. Although they think they know everything and tell us what they will and won't do/allow/permit, we are still the parents and have the experience, the bigger picture and the 'strategic overview' for want of a better phrase. So, sometimes, and very carefully, we may want to say to them 'I know what you think, but on this occasion, for these reasons..........'! So, you may have to get involved

Positive - do you know about NEETs?
They are post 16s not involved in employment, education or training. There are local level targets for them and LAs want to avoid them at all costs! So - if anyone puts up a block about your dd and her post 16 activities, you may want to ask them if they think she will end up as a NEET - because they would not want that, would they!!!
If your dd is not up to it because of her health, then I think but do not know that they ought to be able to negotiate something.I think they may have a duty to meet her needs - because otherwise she risks bee#ing a NEET. Does the college have an SEN & Disability policy? Hope this makes sense

[PositiveAttitude]

Hi 21again - How did it go today? HAve you managed to get any further with DD and these "friends"?

Dwardle - firstly thank you very much for your info. This is whatn I am so desperately trying ot avoid (and panicking about) I didn't even know it had a recognised "name". - If I ask questions about her being a "NEET" do I say "neat", or N.E.E.T. If I ma going to pretend I know what I am talking about, I dont want to look like a right wally!!

DD has received an interview letter today for the childcare course at the college and also went there today to have a look around with her connexions guy. She was there for just over an hour and was shown a few places, but did a lot of walking and is now absolutely wiped out (and very grumpy!!!). The interview letter says that it will take 2 and a half hours. I dont know whether to phone up and explain that this is going to be rather difficult for her, or leave it. If I phone they might think I am being an interferring, over-protective mother. If I leave it, she may not get the place if they think she is not taking an interest and being lazy after the first hour?
What would you do?

I hope everyone is having a good day.

[dwardle]

Just a quick answer to PA- could her connexions guy mediate re the interview? I think this is a tricky one but there must be an answer. could you ask the people at the centre?
You say neat by the way! Not a silly question. Will try to find out a bit more and forward you a link!
21again - how are things today?

[PositiveAttitude]

Thanks, good idea. I will do that tomorrow. Neat answer !

[twentyoneagain]

Thanks for asking everyone, DD is better tonight as one of the "friends" was away and it seemed to make all the difference. That at least gives us some ammunition to work with and makes a bit of sense. I wonder if she sees DD as a threat as DD and one of the others have been selected to do several sporting events together and other girl didn't get through. We will have to see what tomorrow brings. DD had a history mock today and maths module tomorrow, fingers crossed. She has dealt with so much that this setback just seems really hard for her.

Positive, Dwardle's idea of mediation from the connexions guy may be the answer. Well done to your DD today, hope there's not too much fallout.

[PositiveAttitude]

21again - I hope the maths exam went ok. And I hope that having a good day yesterday means that the negative cycle has been broken and your DD will feel more confident even if the other girl is around. Surely, if the others spoke to your DD when one was away it shows that they hold nothing against her. Is the one that was away a bit of a ringleader? ANyway, I hope things have been good today.

I emailed the head of the education unit today about the college situation and I am waiting for a reply. DD was quite excited about being called "NEET" until I told her what it meant.
Far less stressed today after a nightmare evening yesterday. Boyfriend round, so all smiles tonight!

Hope DCS are having a good week.

[optimisticmumma]

21again - hope this week is proving better for your DD. I agree entirely with PA and Dwardle regarding the personal tutor. Even if things are getting a bit better I would still have a chat. Your DD doesn't even need to know if you ask them to keep quiet! I'm afraid I always go for the sleuth option as it usually avoids rows! I got DDs tutor to track her round school to see if she was included in groups and to track her general wellbeing. It was reassuring. It sounds like the girl who was away is the ring leader but that doesn't necessarily make it any easier if the others won't back up your DD!
I do think you must try not to worry overly. Teenage girls are not nice and all our DDs have to learn to be resilient and to know when to ditch the meanies and move on. DD had a similar thing recently where a friend was v. moody to her and another girl. When the other girl asked someone else she said 'oh so-and-so's other friend doesn't like DD and DD's friend'! Now I can't even keep up with what I am writing and it doesn't make sense but suffice to say my DD is being disliked by someone who doesn't even know her. Luckily she shrugs her shoulders and seems to be manageing not to take it to heart. I would have been devastated!
PA - I'm sure your DD is NEAT!!

[PositiveAttitude]

OM - Hopefully not a NEET, Bedroom definitely UN - NEAT, but yes, dd is quite NEAT, me thinks.

[optimisticmumma]

[dwardle]

Ho ho ho!
Hope all are okay - Katsh - you have been very quiet- how was your weekend away?
Slow progress here but it is progress - dd not feeling brilliant but IS getting into school and is well on with the work for her art exam.
Here is a link about NEETs - good as a starting placewww.dcsf.gov.uk/everychildmatters/Youth/ypnieet/neet/
My dd is not at all neat