Any other parents with dc with a post viral illness/fatigue?

[roundabout1]

My dd (just 7) has been diagnosed with a post viral illness after on & off illness & just being generally off & tired since Jan. I know with time it will get better bit now we are back at school we are back in the cycle of constant tiredness, not sleeping etc etc. After a cold my dd has been off school all week, she's so up & down I dread seeing what she is like in the morning as know I have to try & decide if she should go to school, I know that sounds awful. Anyone else going through this?

[dizzimammi]

my youngest (12) was diagnosed with chronic fatigue syndrome after a bout of glandular fever in Jan. So yes it is a nightmare of a rollercoaster.

[roundabout1]

Hi Dizzimammi - I really wouldn't have thought that a non serious as such illness could cause so much stress. We have at least this term got a letter from the paediatrician for school explaining the situation so am hoping that should take the pressure off. I hope your dc is doing ok.

[dizzimammi]

The paeds letter should get the school to back off, keeping the stress down is key to recovery. Really is no benefit pushing a little one into school if they are not able to cope while they are there.
My boy is getting stronger and stronger, and just returned to school after missing the last two terms completely.

[cestlavielife]

yes dd 12 since june - with dizziness and has possible vestibular neuronitis but not conclusive, has been refered to psychologist at hosp for coping strategies (but is older)

school have been helpful in sayng com to school and rest if you need bu this is secondary. if you at home adn she can be off fine but also try doing half days in the afternoon if she can ? to keep up with social side ?

[roundabout1]

Dizzi Your poor boy he must have been really poorly, I'm glad he is getting stronger

[roundabout1]

cestlavie - I feel for your dd, I have Vestibular Neuronitis & have numerous associated problems, not just dizziness but nausea, can't stand certain lights, glare of pc screens etc. I really would not wish it on anyone.

Our main problem is that while the adrenalin is flowing dd copes but then is exhausted after so school don't really see her when she is unwell. I did in the end send her into school this afternoon, she had perked up a bit & I really thought she needed to get out & mix a bit, she begged me not to send her in & it was so hard but glad I did as it has cheered her up no end, she is exhausted now but in a much better place mentally & emotionally. So hard though to know when to push her & when not to, feels like a Catch 22 situation most of the time.

[dizzimammi]

It is so difficult to try to balance things, getting them to slow down and not over do things when they are on the up, and getting them to try a little harder to actually want to do things when they are down.

We had counseling weekly and physio daily since the beginning of June. Cognitive Behavior Therapy really got him (and us) through the some of the darkest of times. So hopefully with yours being that much older Cest coping should get easier.

[cestlavielife]

I ve been chasing the psychologist referral . Is in the pending tray. Grrrr.

You right dizzi is ahrd. Paed was quite firm as was school tutor in "go to school and take breaks there " but Was off school Friday, came on day out Sunday but more dizzy and nausea since then and couldn't manage even half day today.... Tried to get her to school was trying to vomit (but she has sometimes done this when anxious) hard to know when to push...

Roundabout how long have you had the vn and are you getting treatment ? does it go away? D you think the nausea is part of it ?

[roundabout1]

I was in the catch 22 - do I send her in & make her worse or send her in & it will perk her up problem today. Dd did look unwell, flushed, puffy swollen face (the main sign when she is unwell) but she was off on tuesday & in hindsight could probably have managed going in at least for part of the day. She feels sick when unwell too & was gagging this morning, this I know though is made worse by the anxiety of going in when feeling ill. In the end I sent her in, with a note for her teacher, so will wait & see.
cest - My VN is unusual so don't let my story put you off. I had a virus that has damaged my inner ear, one side only has 60% function. I had VRT Vestibular Rehabilitation Therapy, basically eye & balance exercises but this in turned triggered migraine symptoms, so I am a bit stuck at the moment. Vrt does work for most people but possibly because of my migraine it doesn't seem to be working for me. The symptoms are quite vague really, there is dizziness although that has died down now unless I do something that provokes it, the worse symptoms are the inability to cope with visually busy situations, crowds, certain lights, even busy traffic at times just seems to send my brain into a panic. It's so hard to explain but it makes everything seem overwhelming which in turn can lead to anxiety. I have huge trouble travelling in a car, will cause travel sickness & also when I get out of the car everything is moving, like in waves. Nausea for me was a huge part of it in the early days (have had it 5 years now) & everything made me feel horribly sick, now its just the travelling or watching fast moving tv that makes me feel that bad. I know for me having VN has affected my confidence hugely, I am always thinking what triggers there will be tat make me feel worse if I am out & also in the early days what would I do if felt really dizzy when out. It really does seem so unfair that a child has to put up with all of that.

[roundabout1]

Can I ask have either of you had any other health professionals involved with school? School now have a letter of paeds but it is very vague & doesn't really give much guidance on how to make dd's life easier at school. Would the school nurse be of any help do you think?

[dizzimammi]

Take a look at the ayme.org.uk website. There's lots of great information on there, it is aimed at young people with ME. We joined as soon as we found the site. Personally we don't live in UK, though we had the diagnosis at Great Ormond St, we have very much had to get therapies to manage his condition in a very piecemeal way and without any kind of co-ordination other than what we do ourselves.
Sadly even though my son has spent the last 8 years at the same "English School" my husband had to get the law changed here (only happened last Thursday) to get the school to take our son back as he is still using a wheelchair and having rehabilitation because he was pretty much paralyzed at his worst point.
From my reading of ayme information, a UK school should appoint a liaison person that you will keep in touch with. Our CBT counselor offered to speak to the school (she has a very strong NHS background) and is used to doing this kind of thing. Maybe Form Tutor would be your best point of contact to request a sit down for you to explain things, and with the school nurse.
I know my son's paed would also speak / write to our school if he was asked.

[roundabout1]

Thanks that website is great. Sounds like you have been through an ordeal, it must be bad enough having your ds incapacitated to such a degree let along having legal battles too.

[cestlavielife]

i've just left a message fo the "reintegration officer" - educational psychology service gave me his name and number.

still struggling here with dd not leaving sofa but CAMHs have promised an appt "this week".

also if paed does not ring back with an appt will take dd to a and e tomorrow so they can assess her physically (maybe on call camhs?) as has now been ten days barely moving off sofa .... says is v dizzy, certinaly sways when walking.

roundabout tks -the vestibular testing wasnt entirely conclusive, but did show some unsual readings indicating slight assymetry. not enough to be totally conclusive. they say an episode of VN but not yet recompensed "maybe due to psychological issues"! we awaiting an MRI.

this guidance document was pointed out to me and is useful -

www.n-somerset.gov.uk/NR/rdonlyres/849E02A0-70B7-4704-8191-AA48E85E71C5/0/Everychildmatters_Emotionallybasedschoolrefusalguidance.pdf

i have sent the link to school tutor asking to "work together" with them.

dizzimammi - dd is at a foreign school in london (her dad is european) so similar thing the rules are dfferent and tutor has already said we will have "legal problems" over her lack of attendance!!! our LEA EWO wont help as she out of borough and not in a LEA school...

[dizzimammi]

So how is everyone this week?
any news from paed or have you made the trip to A&E Cest?
has yours made it into school Round?

Mine is currently trying to get through his homework, whilst bouncing off the walls here. We have just told him that we hope to head for London at half term next week to see his sister who is at university there.

[Mollydoggerson]

Have you tried complan/ensure plus?

[roundabout1]

My dd hasn't gone into school this week yet, am planning/hoping to send her in tomorrow. She rode her bike in the park on sunday for half an hour and at the time was thinking it may be too much but it was a lovely day & we drove there to minimise the activity. She has an awful cough & took her to the doctors yesterday and she has antibiotics for a possible sinus infection. Our main problem seems to be lack of sleep, before this dd (then 6) had much more sleep than her peers, was in bed by 7pm 7.30 latest & usually had 12 hours uninterrupted sleep. Now she has such trouble getting off to sleep the last week or so its been 11pm on average until shes asleep, she's tired but either overtired & feeling poorly or if shes had a restful day her mind just wont switch off.

molly - I think we've tried pretty much every tonic & vitamin supplement going & to be honest haven't found much improvement :(

[cestlavielife]

Paed agreed to see her at end of her ward round. Cant say when she will feel better....nothing new other than try and live with it try and go to school ..... Is chasing MRI ; and physio referral for vestibular exercises . Saw psychotherapist in pm. I didn't get the vibe they thought it was all Entirely psychosomatic ...while there she was retching and feeling ill... they will liaise with school... Try get school to be more supportive about eg going in half days..

Reintegration officer was helpful on phone but needs the psych report. Seems unlikely she will get to school before half term... Possibility of being day pupil at the hospital school if things don't improve...

My head spinning now .

Friend proposing homeopathy which is sweet but like the tonics etc I feel would be just another appt to add....

Bouncing sounds very active and positive dizzi ? Some of the schools here are not o half term til the week after so it might not be too busy in London

[roundabout1]

cest - I'm glad psychotherapist saw your dd when she was feeling really bad. It is such a hard thing to diagnose & such an invisible illness. It must be so hard on the whole family too, I know we are feeling the stress here & we our dd's problems are so mild comnpared to yours & dizzi. One thing I thought regarding your dd, does she spent lots of time lying down? When I first became dizzy I lay down as much as I could as the world was spinning & making me feel so sick. In a way though if it is a dizzy inner ear thing its the worst thing to do, the brain needs to retrain itself & so needs movement in order to compensate. I know when I've been lying down for other illness reasons my dizzies get worse when I get back up on my feet. Sitting propped up is better than laying down & just taking a little walk round the house every hour helps things. Sorry if you have been told this already, just a thought.

dizzi - I added a post last night but seems to have disappeared. Its great your son is so excited & has something lovely to look forward to


My dd is actually in school today - yay!!

[roundabout1]

How is everybody doing?

[dizzimammi]

Well we are in London enjoying half-term. Up early and although DS is recovering from a cold he's happily drinking hot chocolate and eating crepes whilst he plays FIFA 13 on PS3 . Yes we had to bring it with us, but thankfully he allowed us to leave his dog at home!!!!! He wants to meet up with his sister later to see the new Bond movie. I hope to venture out and find a christmas cake to take back with us, hope Tesco's have the Courvoisier ones again this year.

[roundabout1]

Dizzi - sounds like you are having a great time, I'm so pleased for you all. Hope you get lucky with the cake!

[dizzimammi]

Well back home, back to school (reluctantly) and back to work (come here for the rest).
How is everyone else?

[roundabout1]

Dizzi - Glad back to school albeit reluctantly!!

Well dd didn't have too good a week last week on half term, some fun but symptoms every day & had to factor in half a day of rest each day. Back to school y'day in tears but managed ok. Again today was shattered & feeling crappy but had a good day but missed PE, tonight happy but unable to go to sleep which means tomorrow she will be shattered so feeling bad so not wanting to go to school Arghhh!