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 all
Typed a lovely long post and it got lost!
So - rapid response
21again - so sorry to hear about your problems. Send big hug and please don't stop talking we can listen!
Choc - you have not offended at all - I think we should all share what we have found helpful but we all make our own decisions about what is right for our dcs.
Positive - hope things are okay for you.
Katsh - hope things are okay for you too
Am SO stressed but fortunately only work so that's okay! Optimistic - how is your dd? Is she great?
Incidently, dd's CAMHS person spent ages explaining to her the physical responses the body can have to stress. Think she now believes me when I explain to her that the various ailments that pop up are linked to her trying to cope with exams that she wasn't in lessons for! Hopefully when that is over, she will be great!

Choc are you around? A quick question, as a fellow non-LP-ed DD! Did all your DDs symptons decline in a logical order, or did some of the more severe ones hang around longer than you expected?
I ask this because when DD was at her worst she had real trouble swallowing food and drink and was so nearly hospitalised on many occasions because of this. Anyway, nearly a year on, and she has improved a lot, but we still have to be careful when she is eating because her throat muscles just give up and she has trouble swallowing. Just stumped a bit as to why this is still lurking around and not disapearing as quickly as I expect it to.
any ideas?

Waves to everyone else around.

Hi Positive ...yes I'm here! DD never had the swallowing problem (thankfully). She does still occasionally get wobbly legs though which I find hugely scary because that's how she got before she stopped being able to walk. I do think these things can pop back but hopefully if they're in better shape, they don't stay. Sorry I can't be of more help!
Hello to everyone.

Thanks choc. Yep we have the wobbly legs too, which worry me and the leaning against anything and everything. I am beginning to think that maybe she is not as well as we had hoped and she is able to keep up an appearance of being better than she really is, if you get me.

Sorry things not quite so good positive. We are going backwards at a remarkable speed here, despite the adoption of very strict pacing. DD is a weird grey colour, and complaining of lots of pains. I've left a message for her paediatrician as we're not due to see her until August, but I am feeling a little concerned and would like her checked out sooner. Even dd's play therapist phoned me this morning to say that when she saw her yesterday she was really alarmed . Play therapist sees her weekly so it's helpful to have her observations as sometimes I wonder if I'm seeing deterioration that no-one else sees.
Hope everyone else is ok.

Oh gosh Katsh - do keep us posted. Hope your paed gets in touch.

Also - even with LP, dd still has range of symptoms which reoccur. I do think, however, that what our new paed said was very helpful - which was that recovery from ME was a very up and down upward curve - like a jagged line which I can't reproduce here. It's just that over time, the low jags go less far down than they used to.And the up jags get gradually higher! Hope this makes sense after v hard day!

Have I thread - killed?

Obviously, Dwardle

Laptop problems here and frantic revision needing all the computer time {grrrr} sos not getting on a great deal.

Ticking along here. Hope you are all ok.

thought I'd just pop in and see how everyone is doing ...all out in the sun no doubt! Hope the good weather is helping DD, Katsh and she's improving. Any joy on getting the paed appointment brought forward? Hope everyone doing is exams/revision is doing OK. DD had her first Maths AS module this afternoon, she gets sooo stressed and jittery ....lots of red energy for nothing. Seemed to go OK in the end, last one on Thursday, then she's done for the moment thank goodness.

Hello everyone.

I hope this thread is quiet because everyone is doing ok at the moment!

Just wanted to come on and share some news from here.
DD3 took her maths and english tests this week. (not GCSE due to lack of schooling, but a smaller test.) She passed both. SHe had been more confident about the maths, but had a major confidence meltdown on the morning of the test and was in a terrible state. She passed, but perhaps not as well as she had hoped. English, she did not expect to do well in, but when in with the attitude that it really didnt matter, she had the maths one, so was not going to be a 16 year old with no qualifications at all, and she did really really well and has been advised to do the next level test.

My dyslexic girl who has had such little teaching over the past 2 years and was so far behind anyway actually got 100% in a reading test!! I cant believe it, neither could she!!

We are going shopping today on the mainland. Probably taking on too much, but hey, DD wants to give it a go, so plenty of coffee stops planned and we have sat down and planned which shops we are going to go into and in which order so that we can maximise the day with minimal energy. I know she will come back exhausted, but hopefully happy. We need to buy some clothes for a wedding and holiday in Greece in June.

Have a good weekend everyone and I hope you and DDs are all doing well.

Hi Everyone
Great to hear such positive news, Positive
Things are pretty good here too. dd has 2 gcses exams left to do and has been having a fun time with her friends. We have 'review' appts with Paed and CAMHS in Oct just in case but she is now to all intents and purposes out of the support system and is behaving like a teenager in every way

Those of you who have dcs not as far on please see this as proof that they will get though this and things will get better - cos they do!

Hi, How are you all doing?

Katsch how is your DD? Has the warmer, sunnier weather helped her?

How about all the revising and exams for everyone else? Only a couple of weeks and all the stresses will be over (until the waiting for the results )

It was this week (9th June) last year that DD3 stood up for the first time in nearly 5 months.
It was also 2 years ago this week that she was ill with Glandular fever, which triggered it all off for her.

She has been doing really well recently. Yesterday she even played with her brother for a while and was the livliest we have seen her, probably for about 20 months!!! She then went and sunbathed ..... under a blanket because she felt so cold, but wanted to sunbathe to feel "normal". And was exhausted by the evening, but on the whole a good day and some small steps forward.

hope you are all doing well. Please keep posting, I find it really encouraging to hear how your girls are doing and how much they are improving. It boosts my positive attitude!!

Hi, sorry for not posting for a while. Last week was spent away from home doing intensive rehab for my other dd and was fantastic and amazing. Big progress there - thank goodness.

Choc hope your dd has enjoyed her half term. How many more exams has she to do? I hope things continue well for her. Dwardle glad all is good - I hope you've been having a lovely time in the sun! positive - great to hear of your dd playing and sunbathing. I hope that today she's not too tired.

My little dd continues to be up and down. She is as I write playing in the garden - looks like a little ghost, but is very happy. a very tight pacing few weeks has definitely got her out of a bad spot - I always find it hard to know where to go to from this point though. Continuing strict pacing makes her ( and all of us) feel like life is very constrained and dull. This week she's had a good time with her siblings at home, and has had fun. Where we went for dd1 last week was actually the same floor of the hospital in Bath where the paed. CFS team work, so at the prompting of the team we were with I have asked GP to refer her to Dr Crawley for assessment. I feel that 13 mths in we could do with having a fresh look at everything.

Hi All - hope half term has been good for everyone. Glad all the DDs seem to be doing Ok. Really pleased your DD is going to be seeing Dr Crawley Katsh.
DD finished her exams the week before half term. 1st one was good, 2nd one she found harder which she expected so now we have to wait until August!
Over half term we took DD to Brighton over night - first time she has seen the sea for 3 years ..she was very excited. On the whole it went well, a few hiccups ..like even though we had planned exactly where we were going to eat, the car park wasnt where we thought and she had to walk further than expected ..legs nearly gave up and she ended up rushing off to the loo in tears ..not the best meal. However, she bounced back the next day. Legs did pretty much give up on her return home but only for a couple of days and with improvement each day so far more pluses than minuses.

High ladies, sorry I haven't been in touch for a while but just to let you know DD has done Lightning Process!!! Looking good so far. I will try to get on tomorrow to update you.

I hope things are going well for everyone and I have checked in every so often to keep an eye on you all.

Bye for now...

Oh Wow 21again, Really pleased it seems to have gone well. Coame and tell us all, please!!

DDs 16th birthday yesterday. Lovely to see her so happy and she managed quite a lot, flagged during the afternoon and managed to cause a bit of a row!

Hope you are all doing well.

Oh WOW 21again. So many questions.
Remember - LP is a tool to use and practise! DD has just been back to see her practitioner one year on for an update.
She is in middle of gcses and is great
Hi Positive - hope things are okay today!
Good to hear from you Choc and very pleased to hear about progress.
How is the Dr Crawley referral going, Katsh?

21again - so pleased for you....I'm sure it will all go swimmingly - just trust in it! Did you do it with her?

DD still good although has an awful cold this week but still no CFS symptoms after 14 months! Yippee!

x-posted with you Dwardle - great that your DD is so much better.

Hi to Katsch and Choc - glad you are making progress too...

DD was not good. She had gone downhill really quickly with anxiety and depression related to problems at school. This led to not eating and quickly spiralled into the beginnings of an eating disorder. Although we were nipping it in the bud and making her eat, her moods were very up and down and she was becoming very withdrawn and unresponsive.

I started talking to a local lady practitioner about 3 weeks ago and we had several conversations and exchanged many texts. DD went to see her and spent some time thinking about it and finally decided to give LP a go and so she started last Thursday.

There was no visible change for two days and I was really beginning to despair - although the practitioner was very positive and said that DD was doing really well. At the end of day three I was still not very sure although I could see the beginnings of some spark. I took her shopping and she cheerfully drank a starbucks frappuccino and was good company. That night DD joined us for our evening meal and actually joined in the conversation and laughed for the first time in what seemed like weeks. By the end of the meal however, she was quiet and disappeared up to her room for most of the evening.

The next day was when the changes seemed to happen and by Monday morning she was very different. She has been focused on her school work and coped with GCSE modules this week. She is chatting cheerfully in the car and laughing with her sister. She is still not over keen to eat all of the time but for the vast majority of the time eats whatever we give her without a murmer.

She is a different girl and coped with a visit last night to the psychiatrist for a check up. All I can say is that the changes are coming through now and llife suddenly seems a lot more positive and upbeat. DD was playing touch rugby at school when I picked her up this evening and she cheerfully ate three chocolate biscuits and drank a lucozade.

There is a long way to go and I am having to type this in rather a hurry so please forgive the mistakes. All I can say is that although LP is not a treatment for eating disorders, it most certainly has changed DD's outlook (admittedly she was not dangerously ill) and I am quietly optimistic at the moment..

Have to go now but will be back later. Love to you all ...

Hello everyone, just popping by to say hello and to hope you're and your DCs are all well

My DS is coming up to seven months, am amazed at how quickly he has grown! Am struggling a bit as he is getting heavier, and am slightly dreading him getting on the move, as I have no idea how I am going to keep up with him!!

Anyway - main reason I am here is to be very cheeky. I found a while ago, whilst pregnant, that there was no information WRT pregnancy and ME. So I have decided to create some Am currently gathering information from people who are pregnant, have recently given birth, and who have slightly older children to put together a book of experiences and advice. I was wondering if during your ME journeys, you or your DCs had come in contact with anyone who might be able to (and want to, of course!) help?

Sending pain-free and mobility improving vibes to all!

Just wondered if you had name changed ..as I don't remember your name, although I do remember a poster who had a baby. I don't have any direct experience but my DD who is the eldest child of the Mums that post on this thread knows through her various online contacts of a number of girls late teens/early twenties who are expecting or have small babies. Not sure she is aware of any particular issues/problems they have had (other than the usual ones) though. Looked on your profile and your DS looks delightful and has a very cheeky smile.
Have a good weekend all.

Hello everyone. I'm glad to hear of good things going on for many at the moment. Seeing the sea, for choc's dd and Positive's dd's 16th birthday, and 21's succesful lightning process, and Dwardle's dd doing well through G.C.S.E. Fantastic . WE are seeing improvements here. DD went in to her school today for the 1st time in 7 mths. Her home tutor brought her in for 10 minutes to choose a book from a school library and it all went well. Dd even put on her uniform, and the trip in was because she asked to go. When she came home from school she read the book, coped with seeing a spider ( usually precipitates a total anxiety meltdown) , and has just been for a blood test at which she only shed a few tears. In her world these are all enormous achievements. We are now in the system to see Dr Crawley - just waiting for an appointment date.
Hope everyone has a good week.

Thats brilliant news Katsh. Hope DD continues to have more good days. It sounds as if she has really improved and has done a lot. When DD improved here we really felt she turned a corner. I hope your corner has been turned now.

At work, so shouldn't really be on here, just couldnt read and run!!

That's great news Katsh.
Hi Sir Boobalot. Pregnancy & ME is totally outside my experience I am afraid. I think there was someone on this thread ages ago who had a baby but cannot remember who. Anyone?
How is dd, 21again?
Must fly - no, I'm not watching football!