Online Blog

I agree with everyone else about this- Claire is 29 and sometimes even
now we're not sure whether or not she's having a seizure, especially if
she's not well!
Trish

Hallo Jos,
Ik snap je mail niet
groet
anne

Hi Emma,
this really difficult because every child is different and their
behaviour might or might not be a seizure, I've learnt that it is
most important to stop seizures in SWS and I am pretty paranoid about
that, so please bear that in mind when reading my comments & don't
let me worry you, also I'm not a doctor & I've only had experience
with my son.
My son Max had similar episodes, only he would tremble rather than go
floppy. He'd roll his eyes or fix them in one direction, dribble lots
of saliva, swallow nervously & have sweaty palms. The episodes would
last 30 secomds or more, but he might have 5 or up to 60 a day, which
some people call call status epilepticus. I spent weeks in hospital
with him while they adjusted his medication and got him stable again.
But I didn't have a husband or other children at home to worry about
which made life a little easier. I wanted Max to be where he'd be
looked after if it turned worse and for a doctor to immediately
assess whether it was a seizure or not. I wasn't sure because I don't
have any other children to compare & I was hoping he was just being
odd and not fitting. It was very difficult, they 'observed' him for
two weeks (as you say, I could have done that at home) and did an
EEG, but it was only when I knew he was having a cluster of these
episodes & insisted they do an EEG right then that they could record
AND observe it and say for sure this is a seizure.
Any way, long story, short ending, since Max's seizures stopped in
2005 he's been making good progress. He does roll his eyes up to the
right sometimes (towards the 'healthy' side of his brain, he had a
left hemispherotomy) but this time I'm sure he's only playing around.
Hope this helps a bit, I'm happy to talk about my experience with Max
if it helps, he's been through so much in his short life. I can talk
about him all day if any one will listen, he's such a treasure!
All the best, Antonia in Devon.

Hallo Froukje,
Welkom op de lijst, hoop dat je wat hebt aan de verhalen van de anderen.
Waar bestaat je revilidatie programma uit? Zijn er ook foto's e.d. gemaakt?
Zal mij zelf even voorstellen, ben Gerda al 12 jaar whiplash, volledig
afgekeurd. Doe nu wat vrijwillergs werk, af en toe heb ik nog weleens een
terug val, maar meestal is dat te herleiden.
Ik hoop dat je veel steun zal vinden bij ons whippie's.
groetjes
Gerda
_ _ _ _ _ _ telefoonnummers en adressen voor vragen en hulp _ _ _ _ _ _ _ _
helpdesk medisch/juridisch: 036 - 5386170 Wouter van Eldik
helpdesk persoonlijke steun: 020 - 4270311 Lenie de Vries
helpdesk persoonlijke steun: 079 - 3518438 Gerda van Zijl
helpdesk lijstbeheer: 0485 - 455590 Marjon Vloet

Hi Emma

Not really sure if it's the same but after we got Benjamin seizure free last year, Benjamin developed what at first sounds like what your discribing with the eye's but then as his eye's rolled up his arms also went up. We were told to get it on video which was good as once Benjamins neuro seen the tape he was diagnosed with infantile spasms and put on a course of steroids which unfortunatly did not work but was later put on vigabatrin which did.
Hopefully it will not be this with Alex but try get it on camcorder you never know it might help.
Hope everyone is well
Angela x ( Benjamin's mum )

Hello all. I know Phil has been posting messages about how Alex has
been doing and thought I would just say thank you for all the
messages of support and the 'we've been there, you will get through
it'. Its ironic that now I have finally become confident at dealing
with seizures at home whenever possible, his consultant wanted him in
last weekend because it was taking 5 hours to recover from a 2 minute
seizure....
I confess to also having a query for anyone who might have any ideas
(and sorry this is a bit long). Since tuesday, Alex has occasionally
rolled his eyes up (so you can only see the whites) and gone totally
floppy. We believe these are seizures, but they last only seconds.
More worrying, for me, is that yesterday and today it seemed as if he
was about to do this, and would then roll his eyes left (eyes stuck
left is typical for his focal seizures) - he seems to struggle for
about 30 seconds with his eyes rolling, and then comes back. I've
called the ward, and because its the weekend, I was told that of
course I could take him in, but he would probably only be observed -
which I can easily do at home. His tummy is far better now, so
according to his consultants instructions, I could stop Clobazam
tomorrow (we were to give it again if his tummy was still upset), but
with what I think is ongoing activity, phil and I think
we should give it to him tomorrow and speak to his consultant on
Monday. Has anyone else seen similar activity? Are they seizures or
have I become totally paranoid? As Alex is our first child, I don't
even have 'normal' baby activity to compare it to
Hello to those of you we met in Bromsgrove and thanks again
Emma

Hi Fran,
Clobozam used to be his first line rescue drug, but GOSH have swapped
us over to Baccal Medazolam as Clobozam hasn't worked the times we've
needed it. After that we've got Rectal Diazepam, then phone an
ambulance.
Hopefully this little clobozam interlude will be over on Sunday and
then we can settle down to the simpler Epilim/Topiramate balancing
act which has been very succesful thus far - except when he's under
the weather, like now!
His cold seems better and his tummy is settling down so fingers
crossed. I hope that Emma will be able to get some more sleep (I'm
working away this weekend).
Phil :o)

Hi Angela
At a guess I would say the nose bleeds are something to do with Ben's
PWS. I would imagine it has something to do with the blood vessels
in his nose. I know if Luke picks a spot on his birthmark, it bleeds
very excessively. I would ask for a referral, at least noses are
easy to cauterise.
Sorry to hear about the seizures, I know how you feel, it is like
that little gremlin sitting on your shoulder and whispering in your
ear "oh yes I'm still here" every so often. Maybe it is something to
do with the amount of blood he lost and once his body has got itself
sorted they will settle again.
Take care
Shelley

Hello Phil and Emma,

Glad to hear Alex is back home - I remember I used to keep a hospital bag packed with essentials (chocolate and make up and nappies mainly!) ready just in case when Finn was a baby as we were in and out so often - I'm glad to say things have settled down with age!

I have no experience of Clobozam I'm afraid - which medecine is his usual first line drug?

Finlay had a routine clinic at our local hospital this morning - everything is going fine except that his problematic drop attacks are picking up in frequency again after a long spell of being very settled over the summer, so we are just upping the dose of Tegretol a little assuming that he has just grown a bit!

Angela - I know nothing about nose bleeds either, but it seems logical that it is something to do with the PWS. Fingers crossed for you that it doesn't happen again, it must have been quite a shock at the time...anything to do with heads does bleed such a lot! I never go anywhere without a supply of wet wipes handy, especially with boys!

Hope everyone else is OK,

Fran
noiseboy_surrey <phil@...

Hi Georgina et al,
Thanks for all the nice messages - it is nice to have found a support
network for this.
Alex is still a bit wibbly so he's having clobozam to try and keep
him seizure free while the normal meds build back up.
He's mostly OK in himself, had a bit of a bad day yesterday, but Emma
assures me he's much happier today so far.
One thing we've found with Clobozam is he seems to go very hyper on
it rather than it knock him out... Has anyone else found this?
Phil :o)

christina is 21, she is approx 13st, medication is phenobarbitone ,
keppra, oxcarbazepine and lyrica, quite a cocktail, were not really
happy taht she is on so many and neither is the hospital but it has
been needed for seizure control. we have tried to get her off
phenobarbitone but even when i drop 15mg it has enough effect to
cause prolonged seizure. she actually manages very well on all thses
drugs, at first she was asleep to much that it she couldn't cope
with college or anything, at present she goes 3 full days to local
college doing a vocational course, they have asked her to do another
dasy but not sure she could manage, or should i say we could manage
because moods aren't good when over tired.
christina does get disoriented after certain fits, depending on
type. we have also tried to continue day to day as normal and as
she ahs a wheelchair we do try to manage fits when outdoors as best
we can without having to involve others, reason she uses wheelchair
is weakness on right side, very variable sometimes due to fit other
times just what the day brings, at the moment we are having a
deteriation with right side and she is waiting an appointment with
appliance clinic, she used to wear one until she was about 15, we
were told she didn't need it any longer but unfortunatley physis
says she has to have one to prevent further damage. she has wondered
why such deteriationm i have no explanation.
if i can be of any help just ask.
karenx

Hi Phil / Everyone

Glad you have Alex home he is such a little cutie :)
Benjamin had a bad nose bleed saturday and was admitted to hospital to keep an eye on him he was discharged sunday as the nose bleed had stopped.He has now started with a few seizures which are like a kick in the teeth because we really thought the seizure control was going well.
Do any of your children suffer with nose bleeds i am just interested if this is also a part of his sws or just a one off as it come out of nowhere he was just sat on my knee next thing we were covered in blood.
Hope everyone is well
Angela ( Benjamin's) mum.

Hallo Gerda,
Leuk dat je je zelf Gerda H gaat noemen. Ik had wel uit je verhaal opgemaakt
dat je zelf geen whiplash hebt.
Vind het knap van je dat je zelf reageer op de berichten want tenslotte is
het voor de partner ook best moeilijk om met een whiplash patient om te gaan.
Naar mijn inziens moet je je toch wel veel aanpassen. Ook ik hoor van veel
mensen dat ik enorm veranderd ben. Zelf merk ik wel dat ik meer voor mij zelf
op kom, wat ik voor die tijd niet zoveel deed.
Hoop je hier nog vaak te zien.
groetjes van Gerda
_ _ _ _ _ _ telefoonnummers en adressen voor vragen en hulp _ _ _ _ _ _ _ _
helpdesk medisch/juridisch: 036 - 5386170 Wouter van Eldik
helpdesk persoonlijke steun: 020 - 4270311 Lenie de Vries
helpdesk persoonlijke steun: 079 - 3518438 Gerda van Zijl
helpdesk lijstbeheer: 0485 - 455590 Marjon Vloet

just reading your message about Luke, totally agree about feeling
towards seizures when they get older, it's also more harder for us as
we can't just put them save in buggy. although saying that it's just
another stage of acceptance.
karen

Hi Karen
Yes, she said that it takes much more energy for the body to go
through the demands of a seizure with adult size limbs being moved
about. That is why the recovery time is so much longer. Also adults
feel so much worse for a couple of days, like we would if we fell
down stairs or were in a car crash. She also suggested that we had
not made the right choice staying with our Paediatrician. She
thought we would have been better going to the adult epilepsy
clinic. How old is Christina now? Do you mind me asking what
medication she is on and also how much does she weigh?
Another thing she said, which makes sense but not sure whether would
apply to Luke, is that children are happy provided they recognise the
surroundings and there is a familiar adult around. Adults want
things to be exactly as they should be. They get so much more
confused trying to work out why they are lying down, why their mum
and dad are around when they should be at work etc.
Hope things are ok with you
Shelley x

Hi there,
welcome to the group! I thought the speakers at Birmingham were
really good, despite my having to leave early after lunch. I'm glad
there's so much support and so many interested professionals around
these days to help those newly diagnosed.
The photos of Alex are gorgeous, what a sweetie! Although being in
hospital brings back memories - Max hasn't been there for over 2
years, but spent most of his time there before that.
regards, Antonia

Hi there,
congratulations on your good news, it must be so good to find someone
who understands and can help Luke at college.
His seizures sound frightening though. I'm sure I would have fallen
apart if it had been Max. Max is a lot smaller than Luke, 4 years old
and he hasn't had a seizure for 2 years, so I've just finished
reducing his medication to none. I still carry his emergency
medicine around in case. He would have Buccal Midazolam if he had a
seizure and I'd call an ambulance. The doctors say it is unlikely,
but I'm hoping he never has another seizure.
I hope your consultant manages to get Luke's medication adjusted to
stop any more seizures - Luke must be such a brave person coping with
it all!
Regards, Antonia in Devon

Hi all
Just thought would tell you all about our up and down week. You may remember
the
problems we had at Lukes last school. How he was excluded and how unhappy we
all
were. He is now at a local 6th form college, who didn't want to take him
because of his
previous 'form' but were instructed to by the LEA. We went to parents evening a
few weeks
ago and were thrilled to hear how well things were going. He is no different,
but it isn't
the huge problem to them that it was to the previous school. On Weds we went to
a
halloween do at school and they had heard that we had looked at residential
places
(recommended as the only option by his previous school). We said that because
things
seemed settled we were putting it on hold. His teacher said 'Oh that is good
because we
would love to keep him here'. So that was the good and we were floating on air.
He went to bed and at 12 and 3am he had fairly large seizures, at 5am he had a
massive
one. Biggest one I have seen since he was baby, full body jerking, tongue the
whole
works. So that was bad, but the ugly was that for the first time ever, he
didn't come
round.
The seizure stopped and normally he just pulls his quilt back over him and we
never leave
him until he answers the 'are you ok?' question. This time he couldn't sit up,
he wet
himself, he was sick and he couldn't talk. I was terrified and all for calling
an ambulance.
Luckily Tim is calmer than me and he sat and talked quietly to him and Luke
slowly came
round.
We got an emergency appointment with his consultant and we have increased the
Topiramate dose and he is fine and back to normal now. I am terrified of it
happening
again though. One of the doctors at work, talked to me though about the
differences
between adult seizures and children and that did help.
All we can do is keep our fingers crossed the increase in medication works.
Hope all your little ones are ok at the moment. Scary lives we lead.
love Shelley xx

Hi and welcome to the group.
Thanks for sending the photos and the one of Alex in hospital breaks
my heart. We've all been there and I am sorry to hear that is where
he is now. I hope he is on the mend. We are here for support and
please let us know how he is.
Love to you and Alex and Alex's mummy
Shelley x

Hi all
I called the neuro centre this morning and we have an 'earlier'
appointment...20th November!
Lynn

Hi Everyone,
I've just been pointed to this group by Georgina and Fran - thanks!
I didn't realise that there was a separate UK group as well - which is
nice.
I see some of the same people who we met in Birmingham are members here
as well as on the US site - so I've added Alex's photos to this group
too and look forward to chatting with people.
Regards,
Phil Wright, husband to Emma, daddy to Alex (10 Months, SW, PWS,
Glaucoma) - currently in RSCH with cold/flu induced seizure cluster.

Hi all that picture of the babey pumpkin is sooooooo cute I laughed
out loud - and it reminded me to get the boys sorted for Wednesday -
thanks x
lynn - how frustrating this whole situation is - its such a volatile
area our kids heads and i didnt know that you had been there before
with a similar situation - i hate that people make you feel silly for
asking for help and advice - its just not on! and I wanted to add to
my last post that Alex is an inspiration to us all and he is how
great he is because he has you and his Dad behind him supporting him
all the way and that you shoudl remember that when they doubt your
instincts at the hospital in these situations where you are only
asking for confirmation that this is normal and not something to
worry about - I think that is prefectly responsible myself...
Me and the boys are fine - Mike is away for 6 months - he has two
weeks at home in Feb and then he will have to go back for a month to
finish off... we miss him like CRAZY but are just getting along with
things and keeping busy... its really hard for dan coz he doesnt
understand - he just keeps asking is Daddy still away at work on the
helicopter and Rory doesnt really care about anything much at all
apart from where his next bottle is coming from and how many more
steps he can take unaided today!!! Yes i am gonna have to get the
reins out for him by next week I reckon, and he is 1 year old in two
weeks!!!! A completely different parenting experience to what i had
last time and a challenge in a different way - like I need some eyes
in theback of my head now!!!!!! haha! Its all good though they are
both well and seem quite happy most of the time - given Dans general
cobbiness anyway! mike is ok too - i spoke to him today...
hope you manage to get your appointment sooner and dont get
patronised again..... I do feel for you lynn. Take care ingrid x

understand what everyone means about being 'basic' we took christina
to gp because i was concerned that her foot was very puffy, i got told
that probably due to lack of exercise and try to lose weight, as i was
unhappy i got an appointment with neuro physio we had seen 12 mths
ago. She was very pleased i had contacted her because right side had
deterioted alot in the 12mts and puffiness was due to muscle wasting-
advised us she need e to wear spint asap and sorted one out to borrow
until we got asppointment at appliance centre.
Lesson to be learned, trust your own instincts.
As for head shape, I do notice changes in the area whereop was,
sometimes it appears quite 'in'- can't think of correct medical term
used.
karenx

Hi Angie
I love the picture of your little pumpkin!
Lynn X

Hi Shelley
obviously I meant to put that Luke HAS a promising future, not had, sorry about that!

Shelley
your story does not have a good enough ending because it is not over
yet. I'm sure Luke had a promising future ahead, especially as you
and Tim work so hard to make sure of that!
Lynn X

I agree with shellie it is about the right school/staff not whether
it is main or special - and it is very interesting reading the
stories of parents of older kids who have been through the system as
I KNOW that we will probably have to revisit the subject again and
again and have to make these decisions a few times throughout Dans
education in order to keep getting it right for him as his needs
change and he grows... lynn Dans neurosurgeon told me to ring their
department if I ever was comncerned over his scar becoming lumpy or
bumpy or if inoticed any changes to his head shape..... I would ring
and get an earlier appointment with Paul May and he can put your mind
at rest - but by bringing it forward you are showing him that it is
concerning you - and don't even say the words neurotic and mother in
the same sentence because if we all werent as neurotic mums as we are
our kids would have a dogs life as no-one else can speak up for them
or get them the help they need - i think neurotic is good when you
have children with SWS - it has saved lives in the past and always
strives to make things the best they can be....so there!!!! Rant
over - and I have to say if I am honest even tho GPs are very useful
for scripts and referalls etc they dont have specialist knowledge and
therefor should just advise you to speak to the specialists who
do.... No disrespect meant but in my experience they are general
practicionaers and theerfor are limited and that is probably why you
are still worried coz you know that too. I agree tho that it is hard
when Alex seems fine and you may feel a bit like you could cause a
bit fuss over nothing - but I always say if I'm niggling with doubt i
need to get it checked out..... and its only a case of changing hte
date of an appointment - not really a big fuss.... Hope you are doing
ok ingrid xx

Hi Ingrid
we have had this problem before, Alex tripped in the bedroom and
banged his head, afterwards we noticed a dip in the front on the side
where he had the op. We took him to A&E at Alder Hey and they
treated me like I was mad. They told me it wasn't possible and sent
us home, I ended up crying because I was so frustrated. I was
worried sick so made an emergency appointment to see Paul May. He
also looked at me as though I was mad and more or less said the
same. He said that as long as it was depressed it as a good thing as
it meant there wasn't any pressure, but I did feel as though they
thought I was wasting their time.
I think I will try and bring forward his appointment though or I will
be feeling his head every day and driving him mad!
The staff at Alex's school were all lovely and good to Alex, the
problem though was that they didn't seem to have any high
expectations for him. Because he was one of the best in the school
anything he did was great compared to the others. This would
possibly have been the case in mainstream but at least he would have
had the social side. Since leaving school he has been quite isolated
as the people he went to school with are spread right across the city
and can't exactly go out on their own.
I hope you and the boys are well, when is Mike back?
Lynn X

Beste Mirza,
Ik heb volgende week een afspraak met revalidatie-arts. Ik ga met em
bespreken of een bril wat voor me is.
Yoga zou ook wel wat zijn. Voor iedereen trouwens: even geestelijk tot rust
komen. Ik ben met meditatie bezig. Ik denk dat 't vrijwel hetzelfde is: je
geest tot rust brengen. En dat helpt.
Groeten,
Bart
_ _ _ _ _ _ telefoonnummers en adressen voor vragen en hulp _ _ _ _ _ _ _ _
helpdesk medisch/juridisch: 036 - 5386170 Wouter van Eldik
helpdesk persoonlijke steun: 020 - 4270311 Lenie de Vries
helpdesk persoonlijke steun: 079 - 3518438 Gerda van Zijl
helpdesk lijstbeheer: 0485 - 455590 Marjon Vloet

Hi Froukje,
Welkom hier, ik hoop dat je hier wat steun en (h)erkenning vind.
Ik lees de mailtjes hier regelmatig, maar kan t niet opbrengen om alles goed
door te lezen, dus ik 'reply'eigenlijk ook nooit. Soms staan er handige tips
tussen die ik opschrijf, maar altijd als ik de mailtjes hier lees, denk ik
altijd dat het bij anderen veel erger is.
Ikzelf heb sinds april 2002 een wl, ben toen destijds van 3 bijbaantjes naar
1 gegaan en ook in mn studie alles wat rustiger aan gaan doen, minder op
stap, sporten gaat wat moeizamer en zeker als ik stress heb of te veel heb
gedaan, barst ik van de pijn. Maar ik kan heel veel nog, daarom vind ik hier
niet altijd de herkenning die ik zoek, maar hoop voor jou zeker dat je hier
iets aan hebt.
Owh ja, mijn naam is Kim en ik ben 24.
groetjes,
_ _ _ _ _ _ telefoonnummers en adressen voor vragen en hulp _ _ _ _ _ _ _ _
helpdesk medisch/juridisch: 036 - 5386170 Wouter van Eldik
helpdesk persoonlijke steun: 020 - 4270311 Lenie de Vries
helpdesk persoonlijke steun: 079 - 3518438 Gerda van Zijl
helpdesk lijstbeheer: 0485 - 455590 Marjon Vloet

Hi
I would actually come from a different angle re school. Luke spent 8
years in a special primary school for children with physical
disabilities and associated learning disability. His behaviour was
awful at times, but they coped. He then moved to a secondary school
for children with moderate learning disabilities but with a unit for
children with severe learning disabilities. The first three years
were fine, then we hit problems. He was expected to fit in with them
not the other way round. He was excluded more times than I care to
admit. He got depressed and school went from bad to worse. His
final report was so awful we wrote and complained, but have heard
nothing.
He had to leave at 16 as they did not have a sixth form. Both our
local special schools with a sixth form provision refused to take him
because of his behaviour. Our only other option was a college with a
special needs provision, which we knew would not be suitable. The
LEA asked us to choose one of our local schools and they did a risk
assessment and said he was no worse than pupils they already had and
instructed them to take him. They are coping fine. We had the best
parents evening we have had for years. They feel he fits in
perfectly and is in the right place. Because of the reports from his
previous school they took on extra staff, who they have not had to
use for Luke. They showed us the incident book and yes he has a
starring role, but they are coping. These incidents are the same
sort as his previous school would have excluded him for.
Alex is much more capable than Luke, but I never wanted Luke to be a
square peg in a round hole and special education was the only option
for us. Finding the right school is much more important that
mainstream or special, in my opinion.
Lynn, we don't get bumps and lumps, we get indentations where the
removed piece of skull and the screws have moved over the
years......yuk!!!
Luke does have a brown lesion on his face, which the doctor has
referred him to hospital about. He scared me to death as he felt all
round his neck and asked if he had recently had a cold. He hadn't
but now I am paranoid that this is something nasty. When Luke had a
toxic reaction to Oxcarbazepine I was frantic that he had developed a
brain tumour. His consultant said, you'd have to be really unlucky
for that to happen, as I said if I wasn't unlucky I wouldn't need
you. (nothing personal he is a lovely consultant)
Shelley x

Hi Donna
for what it is worth, if I had my time over again I would send Alex
to mainstream school. As you know, he went to special school but
left with no decent form of education, he is doing maths, english and
IT at college now and is doing great. It's just a pity we had to
waste all of those years at school!
Alex had a fall on Wednesday and cut his head, arm and leg. It was
quite a nasty fall - again, but I patched him up and he was ok. We
are having a new shower fitted (for weeks) so I have been washing
Alex's hair over the sink. When I was washing it yesterday I found a
lump which I had never felt before.
Anything like that and I go into panic mode, so I managed to get an
appointment with our Dr for last night. The Doctor felt his head and
said it is just the shape of his head and I need to get used to it.
AAAAAARRRRRHHHH! 15 years, 15 years I have been getting used to the
shape of his head but I have never felt this lump before. The Dr
assured me it was not a bruise or a fracture but if he has any other
symptoms to come back and he will send him for an x-ray.
I am so frustrated but what can I do? Alex is well in himself but
that lump was NOT there before. The only thing I think I can do is
to monitor him and we are seeing Paul May in December but I dare say
he will treat me the same.
It is so annoying being treated like a neurotic mother!!!!!!!!
OK rant over, I feel better now :-). Has anybody else had a similar
experience and what did you do?
Take care
Lynn X

Hallo Bart,
Sorry dat ik inbreek in jouw antwoord aan Mirza.
Dat bevalt wel mediteren? Ik wil me voor september ook opgeven voor een
cursus mediatie. Ik krijg mijn hoofd bijna niet meer stil van binnen. Lukt
het jouw met mediteren wel?
bedankt,
groetjes
Jacqueline
_ _ _ _ _ _ telefoonnummers en adressen voor vragen en hulp _ _ _ _ _ _ _ _
helpdesk medisch/juridisch: 036 - 5386170 Wouter van Eldik
helpdesk persoonlijke steun: 020 - 4270311 Lenie de Vries
helpdesk persoonlijke steun: 079 - 3518438 Gerda van Zijl
helpdesk lijstbeheer: 0485 - 455590 Marjon Vloet

hi all
Sorry i've been a bit quiet - its half term and we have been busy
doin choo choo rides and allsorts of stuff!!
Danny also had paracetamol suppositories on his list of regular meds
at the docs and our GP told me to never let them get low as with
epilepsy it is vital to keep a raging temp down any way you can so I
always had some in for those vomity illnesses and they do work
brilliantly - and saved us from quite a few hospital admissions along
the way as I could keep him under control at home with them...
Sorry to hear that Finn and Hannah have been sick - Danny has had a
vomiting bug the other week and it really is aweful for them... plus
I agree Donna it is VERY difficult to keep your patience with them
regularly in the middle of the night - I feel like crying when I dont
get any sleep... its like torture!!
i am getting our bathroom measured up for handrails next to the
toilet and along the bath today for Danny - anything to try to
encourage some form of toileting at all!!!! And me and his one-to-one
at school are going to set up special other sticker charts just for
toileting - even just for sitting on it so hopefully we may get
nearer sooner!!
Donna I would say go for gold - send Hannah to school, for her own
sake - as you said 3 mornings a week at nursery isnt gonna be enough
for her - or you... I think dan has benefitted really loads from
going to school - i really wouldnt tear yourself up about this - get
her special needs catered for and get her off to school she will LOVE
it i am certain - she is a busy little thing and very interested in
what is going on aorund her and I'm sure once the change in
circumstances is gotten over you will be glad that you did... hope
this helps in your decision making - it is sooooo hard it makes you
feel sick but Hannah has to go soon - why not get it all organised
and get started? As long as you have made sure all of her needs are
going to be met and that the staff are on side what could go wrong?
However I would stress that any educational needs statements etc
should be done first and that you make sure that you are happy with
her placement and the staff who are going to take care of her... I
don't know how it works in scotland but Dannny was assessed through
the nursery for a special educational needs statement and this was
put to the local educational authority who agreed that he has complex
needs and advised that we send him to special school - I had allready
agreed with the local mainstream primary school who have had success
intergrating children with needs in the mainstream system that they
would give Danny a go and try their best for him - the local
educational authority accepted my choice of this school and payfor a
full time level 3 teaching assisstant working one-to-one with Danny
every day and they have designed the curriculum around Dan so he
joins most lessons but also does seperate work with his one-2-one
lady, and they set achievable targets for Dan within the mainstream
environment. I know that some ohter mums on this site have had
different experiences of the mainstream system and some have sent
their children to a specialist school and been very happy with that
decision. So I guess what i am saying is do the prep beforehand and
then as long as you are happy with the choices for hannah then get
her in there - and she will probably LOVE it... Good luck xxx

Hi Lynn

Am I working now? Can't work out now what I emailed - it was probably something about the fact that we finally plucked up the courage to go abroad with Hannah (last flights booked were due to take off the day after Hannah's first seizures at 14 weeks).

Just got back from 5 days in Barcelona on Tuesday night! Felt very proud to have made it stress free!

Then, Hannah has spent the last 14 hours vomiting (had to repeat Carbamazepine as all came back up this morning). They were talking about admitting her to hospital this afternoon as vomited about 25 mins after lunchtime dose of meds. However, the worst seems to have passed and she is tucked up in bed. I feel like I have been knee deep in vomit all day and boy, has my washing machine worked hard!

I have found out for future ref that a Carbamazepine suppository exists fairly near to Hannah's dose for future vomit episodes!!

Donna

Hi Donna
did you try to post a message and it didn't work? I found
you 'bouncing' again, it is always you, what are you up to LOL?
Lynn

Sorry only just got back to you been really busy lately. The VNS or NVS
sounded really good MIles went to see the Neurologist and there was a
girl there that had it fitted a week earlier and her mum said they had
already seen an improvement.

Hi Fran
me and Alex are around, we will meet you at the hospital cafe. We
will get there for 2pm.
Look forward to seeing you.
Lynn X

Hi to Lynn, Trish and anyone else in Liverpool,

Just wanted to let you know we are at Alder Hey for a clinic appointment this Wednesday (1.45pm appointment) if you are around for a coffee.

Rachael, VNS was mentioned to us as an alternative therapy to try if Finlays condition worsened in the future. They discribed it as a 'no-risk' operation.

Hope everyone is doing alright - you are all very quiet lately so I take that as good news.

Fran
Lynn Buchanan <lb_uk_2k@...

Hi Rachael
I haven't come across it personally but I found this info.
http://www.epilepsynse.org.uk/pages/info/leaflets/factsvns.cfm
I think Karen has heard of it though, if she doesn't come on the
message board you could e-mail her.
Hope this helps
Lynn X

Hi Fran

I bought a new car seat for Hannah recently. I bought a Mamas and Papas one that can be converted between a 4 point harness and the seat belt across method. And I use it with both! She gets strapped in with the 4 point harness first and then the belt goes across for extra hard to get out of factor!

Donna

Hi Rachael
I haven't come across it personally but I found this info.
http://www.epilepsynse.org.uk/pages/info/leaflets/factsvns.cfm
I think Karen has heard of it though, if she doesn't come on the
message board you could e-mail her.
Hope this helps
Lynn X

Hallo Bart,
Yoga is natuurlijk een ruim begrip. Het lichaam en de geest horen bij elkaar
en wat je op het ene gebied doet werkt door op het andere gebied. Ik geef al
jaren yoga/meditatie les maar zie soms ook jaren mensen mediteren en geen
meter opschieten dat is natuurlijk van veel zaken afhankelijk maar het
belangrijkste wat ik zag en daarop heb ik mijn yoga/meditatie lessen
gebaseerd dat als er blokkades zijn (bij ons allemaal natuurlijk) je je suf
kunt mediteren en net als een kaars die flikkert wordt je er zeker rustiger
van alsof je de deuren en de ramen sluit, dwz de omgeving rustiger maakt
waardoor de kaars minder hard gaat flikkeren, snap je het nog, natuurlijk
heeft het zin maar je kunt er nog zoveel meer uithalen .
De manier waarop en wat hangt af van wat er nodig is.
De ene heeft dynamiek nodig, fysiek waardoor overtollige spanning kan
worden losgelaten, en de andere is weer meer toe aan het meditatieve maar
altijd weer eindigen we met meditatie. Maar ja meestal als je stil gaat
zitten/staan merk je pas op hoe lawaaierig het innerlijk is wat voor veel
mensen veel kan zijn, zo ben ik gekomen bij Qi Gong een bewegende meditatie
wat veel mensen momenteel aanspreekt en valt onder de Chinese geneeskunde,
ik noem het chinese yoga. Met name de Qi Gong Chi neng kan ik adviseren. In
China zijn er ziekenhuizen waar mensen Westers gescreend worden en
"bijgehouden en de hele dag opbouwend deze zachte oefeningen doen. Ik geef
dit al geruime tijd aan een groep mensen met beperkingen en mag fantische
resultaten.zien! Inclusief mijzelf de grootste leerling en het grootste
proefkonijn.
Wat uitgebreid geworden in mijn enthousiasme!
Succes met de bril!
groetje
Mirza
_ _ _ _ _ _ telefoonnummers en adressen voor vragen en hulp _ _ _ _ _ _ _ _
helpdesk medisch/juridisch: 036 - 5386170 Wouter van Eldik
helpdesk persoonlijke steun: 020 - 4270311 Lenie de Vries
helpdesk persoonlijke steun: 079 - 3518438 Gerda van Zijl
helpdesk lijstbeheer: 0485 - 455590 Marjon Vloet

Do you mean VNS, or is this something I havn't come accross?!

Fran
Rachael Winskill <rachaeloutram@...

Hello everybody. I was wondering if any of you had heard about NVS
treatment for epilepsy, I was wondeing if it was suitable for people
with SWS

Hello everybody. I was wondering if any of you had heard about NVS
treatment for epilepsy, I was wondeing if it was suitable for people
with SWS

Hi Fran
try contacting these people, they can usually come up with a solution.
http://www.ilp-ltd.co.uk/ilc_index.html
I am sure that you can get seat belts which children can't open.
Good Luck!
Lynn X

hello all,

I was wondering if any of you with older children had any suggestions regarding car restraints. Finlay is now five and a half and getting quite big but I still have to put him in his old 'baby' car seat as it has a four point harness that he can't undo (yet). We are due to renew our Motability contract in a few months and are looking into if there are any adaptations we could ask for.

thanks,

Fran
Donna Marshall <forgecottage@...

Hi
I watched the program. Mark refused to watch it because he thought it was going to be too tabloid-like due to the title living with half a brain.
I didnt expect it to be quite so gory the thought of them cutting Hannahs skull with that saw thing nearly made me vomit. Then it changed to the boy going to GOSH and I called Mark through because it was Dr Helen Cross and Hannahs surgeon, Mr Harkness. I just think these people are amazingly clever that test they did with the reading test to find our exactly where the boys language was located with the electrodes was incredible.
I thought it was good. Interesting in the US they say there is a small window of opportunity and if the child doesnt use the limb, they never will. Then they have 3 weeks intensive therapy in a centre need that here! They said if they could train out the little girls limp in the first few weeks she wouldnt have one.
Certainly seemed to be a very happy outcome for both
Donna

Hi all
I didn't watch the programme,I really don't like the sensationalism,
but I suppose that's what TV is all about. I don't think Alex was very
keen on watching it either! I don't have any regrets about the
surgery, Alex not being able to use his right arm and walking with a
limp is a small price to pay to halt the progression on SWS. I would
have regrets if it had been to late for him to have had surgery.
Take care
Lynn X

Hi

I watched the program. Mark refused to watch it because he thought it was going to be too tabloid-like due to the title `living with half a brain'.

I didn't expect it to be quite so gory - the thought of them cutting Hannah's skull with that saw thing nearly made me vomit. Then it changed to the boy going to GOSH and I called Mark through because it was Dr Helen Cross and Hannah's surgeon, Mr Harkness. I just think these people are amazingly clever - that test they did with the reading test to find our exactly where the boy's language was located with the electrodes was incredible.

I thought it was good. Interesting in the US they say there is a small window of opportunity and if the child doesn't use the limb, they never will. Then they have 3 weeks intensive therapy in a centre - need that here! They said if they could train out the little girl's limp in the first few weeks she wouldn't have one.

Certainly seemed to be a very happy outcome for both

Donna

Hi Lynn

Thanks for doing this. It would be a great help as at the moment we travel to GOSH, not at often as I'd like because of the distance. Jacob sees a local paediatrician every 4 months but to be honest she's not much help with regard to Sturge Weber.

Good luck and I hope it happens.

Christine x

sounds really good idea, at least it would be easier for many to
travel to rather than london, if any help is needed just let me
know, do you know if paul may has an email address, i am lazy about
writing and just wanted to ask a couple of questions relating to
post surgery,
did anyone watch living with half a brain, it was very interesting
and hopefully succesful for them both.
Do you remember eve ohnesorge, he is 26 and had hemipherectomy when

Hi all
I believe that if you don't ask, you don't get, so, with this in mind,
I wrote to Mr Paul May, neurosurgeon at Alder Hey to ask if there was a
possibility of running a Sturge-Weber clinic at Alder Hey.
Today I received a letter from Paul May thanking me for my letter and
saying it is, "potentially a good idea" and that he will "talk to my
colleague Dr Richard Appleton...to discuss how we can move forward".
Fingers crossed there may be a SWS clinic in the future, it will be too
late to help some of us but, if it does happen, it will mean less
travelling for some families and the professionals will be able to
share knowledge.
I will keep you all informed.
Take care
Lynn X

hi all
Thankyou for all the replies - i dont feel so alone now you are
right. sometimes with having rory too who is 10 months old - i feel
like all I do is change bums!!!!! And sometimes Dan will have a day
when its all he does every time he's clean - all day!!! not nice!!
most people understand that Dan is as he is and don't comment but
strangers look shocked when we disappear into the loo with nappy and
wipes - nosey pokes - and actually for so long it was the LEAST of
his problems.
Lynn the twins I am refering too are younger than that - they are now
about 6 or 7 and their mum I think is called Paula and she helps with
the SWF UK, we met them at a conference of theirs a few years ago...
cant remember names - as always...
I'm not going to the SWF UK conference this year as mike is away in
Afgan and I cantr be doing with trapsing the kids and someone else to
help me - plus we have 3 weddings and various bday parties to go toi
around here so not bothering this year... its a bit traumatic still
for me too so its a big mental upheavel which i can manage with mike
by my side no problem but on my own its a bit different....
donna I will e-mail you my number for a chat - thanks for the offer -
any night after 8pm if thats ok? hope so.... can't talk while the
kids are up really!!
Anyway I really must get on - I wa ssupposed to be cleaning my house
but have just spent the best of my 9 hours old monthly wages on the
boden website kitting the boys out for winter!! online shopping
RULES!!!! especially on a cold wet day like today!!
Take care all & thanks
ingrid xx

Hi Ingrid

I have had all the problems you describe re toileting! Just thinking it might be easier to call you for a chat about it that sit and write screeds here about Hannah's bowel movements!!

Do you want me to give you a call? Email me your number on info@... if you do!!

Talk soon

Donna

Hi All
I think Danny got the rash with lomatrigin and was then put on epilim
instead - and he was on tegretol fron 9 weeks old until last April -
tat was always his primary med - all of the others were secondary and
then were changed as the fits caught up again.... Danny has used
Keppra which is quite new he was actually one of the first children
to use it and it wasnt in medicine form at the start so we had to get
the tablets and crush them down into a fluid - goodness - what a
nightmare that was - then he went on the liquid form and that with
tegretol was the last combination he was on and they worked well
together until dnas fits caught up again and he was on the max doses
he could have of the two and still the fits started to take over...
This was becuase of Dannys condition not that the medi wasnt working -
he had no side effects on keppra and it was good while it lasted...
hope that helps...
To Lynn - the only reason i stopped beating myself up for Dan being
born with SWS was when I read about twins down south - similar age to
Dan and one had it and one didnt and that was when i realsed that it
oculdnt have been anything I did - becuase why would one twin have it
and one not? thats when I started to try to move on from that theory
and get on with it.....
And I have a had another look at the pics - they are lovely, arent
our kids gorge?
Danny is still in nappies depsite me trying ot potty train him since
he was one and he also has to take fibre supplements daily as he
suffers with constipation - a doc has told me that its not unusual in
children with neuro conditions to have constripation, and that he
wasnt sure if it was a neuro thing or the hemiplegia causing it to
not feel the same, as the sensations down dans left side are
different to that on his right... Does anyone have any problems with
constipation or tioleting etc - I know its perosnal but it is
something I have never been able to crack - and we now see a
specialist nurse about it and i've just managed to get the meds at
the right level to suit Dan as previously he would end up severely
constipated and in agony!! I used aenemas often and it wasnt good...
so now that is quite well comntrolled I am still trying everything to
get himout of nappies but without pushing it too far as i dont want
to exaccerbate the problem or upset him - the problem which doesnt
help is Danny wont do things he doesnt want to do wothout kicking off
big time and shouting and tantrums etc etc - it is a big problem for
us - does anyone have any advice?
Thanks
Ingrid x

Hi all
I am just catching up as we have been away in Stoke-on Trent seeing
the new baby and trying to make sure Benjamin doesn't feel left out!
Thanks for the photos Shelley and Ingrid, the boys are all gorgeous.
Luke looks just how I remember him only bigger!
Ingrid, as far as blaming yourself for Danny's condition, I did that
too, I was convinced it was because I lay on the side Alex was on to
sleep. I couldn't think of any other explanation as he was a twin
and Chloe was fine. Sounds so silly now. We also had some woodworm
treated in the house and tried to blame that too, only if it was that
it would have affected Chloe too.
I hate to do this to you all, and I have thought long and hard about
it, but I feel I have to tell you this. Dr Rosenbloom at Alder Hey
was strictly against giving children asprin on a regular basis. He
said he has many files full of research showing the damage asprin can
do. It was a long time ago and I'm sure there has been research done
since, but I felt it my duty to share it with you. I think he was
referring to Reyes Syndrome but I am sure this has been considered
with the dose your chidren are on. Here is a link to some info on
Reyes syndrome.
http://ga.essortment.com/aspirinreyessy_pip.htm
Sorry to put the cat amongst the pigeons but I think, in your
position, I would want to know.
Take care
Lynn

Hi

We have also started to see Helen Cross. We met her once of twice when Hannah was in GOSH for her op.

She has started to run joint clinics with our Neurologist at Yorkhill in Glasgow - contract to provide 2 days per year. So instead of having to go all the way to London, we will see Dr Cross when she is up at Yorkhill. She is a lovely lady.

Donna

Our experience with Luke on Lamotrigine was very different and Great
Ormond Street never would accept it was the Lamotrigine.
He got more and more introverted, his already challenging behaviour
got worse especially if you tried to direct him. At Christmas he
loved his presents by his birthday in February he had no interest,
wouldn't open them, didn't play with them. He wasn't sleeping, he
used to pace round and round his bedroom touching things and
twiddling anything he had in his hand. The pacing and twiddling was
happening more and more frequently in the day too. When we had our
appointment at GOSH we told them what we were seeing and they got a
neuro-psychiatrist to see Luke. She said " have you ever considered
your son might be severely autistic". Not before he went on
Lamotrigine, no. We did the thing I vowed I would never do and
decided we as his parents knew him best and we took him off
Lamotrigine and what do you know, we got our Luke back.
This probably was the beginning of the end of our relationship with
GOSH and Dr Aylett especially. Previously Luke had been under Dr
Helen Cross, one of the best Consultants I have ever met. I know a
lot of you go to GOSH and I won't say anymore, but be prepared to
trust your instincts and to stamp and scream if you have to, these
are your children.
Luke is now on Topiramate and Oxcarbazepine. We cannot increase the
Oxcarb as he has a toxic reaction, (strangely he has the same
reaction if we try to reduce it too) so we are increasing the
Topiramate at the moment. Do any of you have any experience of
Keppra? This will be the next drug we try, if we can ever get him
off the Oxcarb!!!
Shelley x

Hi Ingrid

Just wanted to say thanks for sharing all that. It's amazing how we cope at the time but then look back and wonder how on earth we managed it. I feel it's a bit like a roller coaster ride lots of ups and downs. You can be fine for a bit, something comes along to knock you over, then you get back up again! Great photos, I must put some updated ones on if I can remember how to do it!

Must go as I've promised the children they can bake a cake (seemed a good idea at the time) and they're arguing over which recipe to choose.

Christine x

Obviously a lot of it about today. I have also managed to, finally, post an
album. Not sure
why we are so lacking in photos between 7 & 13.
Luke has started at his new school, in the 6th form. So far so good, but only
done 2 1/2
weeks, but they seem positive. Also went to look at a lovely residential school
on Tues,
would prefer him to stay at home until at least 18 though. Then again, when
things are good
it is easy to say that.
We are increasing the dose of Topiramate to try and stabilize the seizures
before we try and
increase the Risperadone for behaviour.
Someone did ask about experiences of Lamotrigine. Ours were not good. I am
happy to
explain more if anyone wants to know, but do not want to put people off as know
it can be a
very good medication.
Hope you like my handsome chaps album
Shelley xx

Hi Shelley

Lovely photos! We also seem to have periods where we take loads of photos then non for ages. Glad Luke's settled at school. I'm having a meeting tomorrow with the teachers and head as the last 2 years at school have been difficult.

I asked about Lamotrogine as that is the next suggested med for Jacob. He is currently just on Epilim, he's still having seizures but (touch wood) not as frequently so I am reluctant to introduce something else. He was on Epilim and Tegretol last year for 5 months and was constantly tired, he stayed in bed until lunch at weekends and kept seeing wierd pictures (he gets this aura before a seizure) for prolonged periods. I've asked the Epilepsy nurse about side effects of Lamtrogine and she said they can sometimes have a rash. I know all children can have different reactions to things but feel I'd like to be prepared. They also don't know what the effects of the 2 meds together will have. I keep delaying the decision but want to stop the seizures.

Hope everyone's ok.

Christine x

Hi everyone
I have uploaded a photie album now - GET ME!!!! Feel very proud that
I now know how to use my new camera etc etc..... take a look - hope
you like them. congratulations to the buchanans - everyone looks
delighted with new baba xxx
I have read all the recent posts but have been quiet coz mike is away
and I'm getting organised and on top of things with the boys - we
have all gone back to school work nursery and it takes a while to get
into it...
Danny has never been on or been offered aspirin therapy... he had his
hemi op in Feb 06 and has been off all medi since April 07 and is
fingersrcrossed and clasping a large plank of wood - seizure free so
far. His development has come on in leaps and bounds since the op
particularly his speech which has gone from 10 words to a whole
vocabulary and growing every day!! (he doesnt shut up!!!!)... He has
tried over the 4 years epilim/lamotrigine/tegrotol/keppra and 3
others which I cant remember the names of and different mixtures of
them together, but the epilepsy always won the battle in the end
breaking through and Danny took a funny reaction to one aswell... He
has been immunised as normal but as an outpatient at the hospital
each time in case of big fits and he had his MMR on time too as the
docs said he couldnt afford to get measles... he has been fine with
it... Dans fit always took over even if he got a tummy bug or a
sniffly cold - he would end up in the hospital on sedatives trying to
bring him out of fits. He also slept for at least 2 hours after
taking his morning medication every day of his life on the medi - no
matter which ones he was on which obviously affected his development -
beleive me the docs said it was just habit until he collapsed in
front of them one morning at an appointment and promptly fell asleep
1 hour after his medi...HELLO!!!! Ah well... I dodnt have any earlier
pics of Dan when he was born but he look like Rory but with a purple
looking birth mark and a bit fatter!!! haha!! so you will just have
to imagine him as a baby!!!! sorry! also I was very anxious with Dan
as a baby - and rightly so - and I got very down at times and so too
did my husband so to the lady who was talking about how sometimes she
felt so bad - I totally related to what you were saying - I spent 4
years beating myself up daily mentally and blaming myself for the way
Danny was born and so did mike - and its only now that I am through
the tunnel and Danny is out the other side and so much better that i
look back and realise how bad things really were and i just don't
know how I coped and how I didnt get carted off!!!! Poor dan being
born to me - bless him!!!
Yes i'm rambling AGAIN!!! I should sign off here - hope everyone is
doing good - fran I have your OLD mobile number!!! I was txtn you on
the day of finn's supposed op - and it was blank!!! Never mind i'll
get it off you again!!
Take care everyone
Ingrid xxx

Dr Aylett said and i quote from miles wirtten report ' A low dose of asprin 1mg per 1day would be helpfull to improve blood flow, chicken pox immunisation should be carried out before the asprin is started'. I hope this will help you.

can any one help me, we have been trying for several years to get
neurologist to advise asprin. What benefits does Dr aylett say it
does??
thanks karen

It would make me sound like some sort of Amazonian woman if I also told you that I didn't even have gas & air!

Donna

Donna - that is just NOT funny!

Georginax

Well done to both of you! Maybe i'll dig mine out and see if i can still get in it!

Glad Miles is doing well. What were GOSH thoughts about the aspirin then? OT is for occupational therapy, looking at a wide range of problems from self help to physical abilities & helping to develop these skills or find work arounds (help me out here everyone as i'm sure that's not the bext description of an OT!). Does Miles have any problems with his physical abilities or coordination? OT & PT are quite closely linked in what they do.

Georginax

If you want a chuckle I just just posted a photo of myself and a
friend dressed in our wedding dresses in the middle of Tescos for
charity.

By the way, what medication are they changing Miles to?

Donna

Congratulations to you all, Jasmine is beautiful and you all look
really proud.

Hi Everyone how are you all. Just thought I would let you all know
Miles went to Great Ormond Street last week. They were really pleased
with his progress so far and said he is lucky he hasnt had any
seizures for the first two years of this life as this has enabled him
to develop. They are going to change his medication because the
Tegratol isnt suiting him. They are also gonna put him on a small dose
of Asprin and he is to see a physio and a OT ( dont know what a OT is
but sounds good). Going down every year so we are really happy.

Hi Georgina

Would it make you draw a sharp intake of breath if I told you Hannah was 10lbs 05 ozs???

Donna

Ouch!

Well done to Laura - I was thinking of you on Monday. It's always a relief when they arrive safely...my turn to be grandma next in February. My grandchildren call me Franma! Congratulations and thanks for posting the pictures.

Fran
Lynn Buchanan <lb_uk_2k@...

Hi all
I have posted some photos of my grand daughter Jasmine Grace who was
born on Monday. My daughter Laura and fiance' Mark, already have a
son, Benjamin, and he is happy to have a little sister, especially as
she bought him Igglepiggle and MacaPace (I think that's how you spell
them!).
They are both gorgeous and we are very proud granparents (I still can't
say that word out loud though lol).
Lynn X

Hi all
I have posted some photos of my grand daughter Jasmine Grace who was
born on Monday. My daughter Laura and fiance' Mark, already have a
son, Benjamin, and he is happy to have a little sister, especially as
she bought him Igglepiggle and MacaPace (I think that's how you spell
them!).
They are both gorgeous and we are very proud granparents (I still can't
say that word out loud though lol).
Lynn X

WELL DONE!! my cheque's on it's way!

Georgina

Well done Alex, we're all very proud of you :-), Good photos too.

Hi all
along with my team, 'Raggy Dolls' I ran in and completed the 5k
Liverpool corporate cup last night. I was running with my cousin
Vincent and we had a good laugh. I took four minutes off my last
time so I am pleased with that. Imagine how fast I would have been
if I hadn't hurt my knee!
Ron was ahead of us with his friend Ewan and they took turns pushing
Clare in her heavy wheelchair. Clare was the winner though as Ewan
pushed her to the finish and she came in ahead of us all.
Thanks to everybody who agreed to sponsor me, if you would like to
send a cheque you can send it to my home address:
53 Brookland Road West
Old Swan
Liverpool L13 3BG
Cheques can be made payable to Challenge Disability Sports Club.
Thanks again for the sponsorship, I know people must get fed up of
being asked to raise money for good causes!
Alex

has anyone been prescibed this drug? Karen

Hi Georgia
Alex had laser treatment on and off for years and it didn't seem to
make a huge difference. In the end we gave up although the Doctor said
we could go back if Alex changed his mind. Alex was of the opinion
that he had more interesting things to do in life than sit around the
hospital and avoid the sun.
Lynn

Hi Georgina

Jacob has also had 8 laser sessions. As they have progressed the improvement has been less noticable. After the last one in May the Dr suggested we gave his face a break and concentrate on his neck and chest for a while.

She said he will need maintenance sessions every so often on his face as the vessels return. This came as a bit of a surprise to me as I thought once the PWS had been lasered the improvement was permanent but apparently this is not always the case.

As you say they are developing new things all the time so finger's crossed...

Christine x

Hi everyone
Nathan has had 8 laser sessions with fairly good results. However,
went for a review last week & disappointingly the Dr felt that there
hadn't been an improvemnt from the test areas he did last time and
therefore there is no further treatment they can give him at this time.
Just wondered what experiences you have all had with laser treatment.
Georgina x

Hello everyone,

Just thought I would share this letter with you that I copied for all Jacob's classmates when he started school. I put a little passport size photo at the top then photocopied them and it turned out well. I had a very good response from parents who approached me in the playground and said they had discussed it, as a family, when the child brought it home.

I don't know if it will be of use to anyone but you are welcome to use it. It cold be changed to suit starting nursery or even changing classes.

Hope everyone is well.

Christine

Hallo waar vind ik jullie chat???
groetjes
gerda H
_ _ _ _ _ _ telefoonnummers en adressen voor vragen en hulp _ _ _ _ _ _ _ _
helpdesk medisch/juridisch: 036 - 5386170 Wouter van Eldik
helpdesk persoonlijke steun: 079 - 3518438 Gerda van Zijl
helpdesk persoonlijke steun: 020 - 4270311 Lenie de Vries
helpdesk lijstbeheer: 0485 - 455590 Marjon Vloet
internet (info, forum, chatbox etc.) www.spws.nl

Hi Katie,
I got the SWS UK Newsletter and a registration form for the family
weekend in the post. I returned the form to Sarah Impey (SWS
Committee member). You could email support@...
to send you a form.
Otherwise, the names & addresses of UK SWS contacts are printed in
the Newsletter, so if you'd like to email me privately on
ace2912@... I can forward them to you.
Hope this helps,
Antonia

Hi Antonia,

Where can you find details and registration for this day please?

Katie

(Mum to Sophie)

maxleonardwilby <ace2912@...

Hi all,
I've just sent off my registration for the SWS (UK) Family Weekend at
the Birmingham Hilton in October. Are any of you going? I'd love to
meet you all again or for the first time..
Antonia

Hi all,
I've just sent off my registration for the SWS (UK) Family Weekend at
the Birmingham Hilton in October. Are any of you going? I'd love to
meet you all again or for the first time..
Antonia

Hi all
here is a link to the site of the club I am raising money for
http://challenge-disability.tripod.com/index.html
Thanks
Alex

Understand your frustration. There are several options of treatment as
well as anti-convulsants. Our Christina had a partial hemi age 6, then
another op at age 16, she has also had vagal stimuli fitted, all at
Walton and Alder hey. As the syndrome is so unpredictable and many do
have good seizure control for long periods it is difficult for the
doctors to make such serious decisions. Unfortunatley for us a
sparents we have to be on what I call the roller-coaster and cope with
the up and downs. karen

Hi Fran
I hadn't read this when I e-mailed you! Wow, I am really pleased for
you but upset at the thought of how much you have all been through
emotionally. Maybe you can stop living in limbo for a while and have
a 'normal' life?
I hope Joe enjoys his dad and lad time.
Take care
Lynn X

Oh my god I don;t believe that they;ve done that! Wouldn't it have been a good idea to say this a few weeks ago? It's a bit of b***** when they only start gving you other options at this point. Unbelievable.

I have to say I feel relieved for you all especially as Finn is doing so well.

Will write again later when I;ve some free time.

Georgina xxx

Hi everyone,

Well, after almost a year of appointments and waiting we got to hospital yeasterday, and by the end of the day were told we are not going ahead at this time - so we are home!!

Of course we feel relieved not to have to go through the operation, but tinged with being fed up as this could have been avoided...the stress on the family has been very hard to cope with for such a long time.

The reason was that basically because his seizures are so well controlled at the moment, that the risks of undergoing the op and the physical changes he would have afterwards did not justify doing it now. As we all know that could change at any time, and they will follow him closely in clinic and I only have to phone if things deteriorate. Because he is progressing well developmentaly and using his left arm well they said he's just too perfect!

Interestingly, they also said that there are other options we should try first if the main promblem is just the drops...the nerve stimulator (didn't realise that was an option) and then the colosotomy which is a lot less dangerous than the hemi. It's like the first stage of a hemi, then you can go back and do the rest if it's not worked....but can't put it back if we take it all out at the beginning! All makes perfect sense and I aggree with them - I just wish the system had allowed for this chat to take place before now instead of putting us all through this.

The only person to be very, very upset by this decision was Joe! We had lots of cool dad and son stuff lined up for this week just the two of them so he was gutted! Of course all that will still go ahead so he feels a bit better today. I think siblings go through a great deal too, he puts up with so much from Finlay - we are going to really concentrate on him for the next few weeks.

So anyway, just wanted to let you know we are home. Thanks for all your good wishes, it means a lot to have that support. And of course I couldn't have got through it all without Sam...I really must try and be nicer to him, he was a star and rushed back up the motorway to bring us home as soon as we called!!

Fran
challenge_alex <challenge_alex@...

Hi all
I know it's a bit cheeky, but if you don't ask, you don't get!
I am running in the Liverpool Corporat Cup - 5k with Ron and Clare
(Trish's husband and daughter) and was wondering if anybody would
consider sponsoring me? It is for Challenge Disability Sports Clun who
I train with. Please don't feel pressured though.
Thanks
Alex

Hi there,
Max's next appointment with his paediatrician is in September & I'm
going to ask about the patches then. Thanks for the web address, I'll
check it out when Max has gone to bed & I can spend some time online in
peace!
By the way, does any one know where I can get some high sides to fit to
a normal bed? Max is kneeling up in the mornings in bed and the usual
baby bed guard from Mothercare is too low. I think he might topple out
and I don't want to risk that.
I haven't got round to asking his OT yet, I just thought someone might
have an idea..
Antonia

Hi Alex,
I'd like to sponsor you, can you give more information?
Antonia

Alex

I would be more than happy to sponsor you. Just let me know the details.

Georgina

Hi all
I know it's a bit cheeky, but if you don't ask, you don't get!
I am running in the Liverpool Corporat Cup - 5k with Ron and Clare
(Trish's husband and daughter) and was wondering if anybody would
consider sponsoring me? It is for Challenge Disability Sports Clun who
I train with. Please don't feel pressured though.
Thanks
Alex

Antonia- did you get anywhere over the scopoderm patches? I've also
found a website that sells neckerchiefs with a waterproof lining in
lots of colours www.able2wear.co.uk

hoi gerda
ja klopt ik merk nu de gevolgen exstra van de whiplash
mijn man heeft al 3 1/5 jr een whiplash maar nu we er achter zijn wat
dit gevoelsmatig /emotioneel doet wordt dit nu echt pas zichtbaar.
Mijn man is heel afstandelijk op het moment naar mij zoek geen
contact op lichamelijk gebied ook niet knuffelen of aanraking. Alles
is weg en daar ondervind ik zelf emotioneel problemen mee. Vandaar dat
ik op zoek ben gegaan. Zijn karakter is veranderd en dat is voor
mijn gevoel niet positief veranderd. IK moet daar echt nog een weg in
vinden.
Heb ook het gevoel dart als ik prat over de gewone dingen gaat
het goed maar als ik praat over iets gevoelmatig dingen of als ik
emoties laat zien dan kan hij daar niet meer op reageren .Het lijkt
soms of hem dit ook niets doet en vroeger zou hij vragen wat er is nu
loop hij gewoon weg .Dit ken ik dus helmaal niet .Denk dat hij ergens
voor weg loop .Misschien dat meer partner er zo op reageren dat weet
ik niet daar ik zelf ook emotionele problemen heb en hier binnen kort
voor naar een haptonoom ga reageer ik er denk ik sterker op .
Denk dat je als partner heel sterk moet staan en dat voel ik me dus niet.
Kan zijn problemen hel goed snappen alleen dat hij niet voeld naar mij
dat is mijn grootste probleem want ik voel dit nl heel sterk als een
afwijzing van mezelf . Hij wil nl ook veel dingen alleen doen en ik
wil nl gewoon samen zijn maar hij wordt door mij toch geconfronteerd
met zijn emoties wat hij zelf ook niet begijpt .Ben hier door heel
onzeker geworden wat ik dus nooit had.
Ik was bij wim mezelf zo als ik nog nooit bij iemand anders was.
Maar we moeten toch hier een weg in vinden en ik reageer hier nl
op zo als ik ben .Maar hij is nu bij een psycholoog en ik heb de
indruk dat het klikt en heb daar ook wel hoop op .Heb zelf ookal
contact gehad met lenie van jullie telefoon en dat was heel prettig
en ook te horen dat het emotioneel ook zo zit bij een whiplash.
Als ik meer te weten kom over wat en hoe met een whiplash
dan kan ik het beter begrijpen en voel ik niet de dingen steeds te
persoonlijk en kan ik er leren beter mee om te gaan en te reageren.
Nou gerda je ziet het is een heel verhaal maar ik ben blij dat ik het
hier mag neer zetten en hoop dat ik ook iets van jullie leer .Vooral
wat het emotioneel met je doet .
ben op zoek naar jullie chat kon hem helaas nog niet vinden. Ben jij
trouwens gerda van zijl Mocht ik nog eens vragen hebben ben je ook
beschikbaar. maar weet niet of je bepaalde tijden heb wanneer ik
kan bellen ed .
groetjes van gerda H
_ _ _ _ _ _ telefoonnummers en adressen voor vragen en hulp _ _ _ _ _ _ _ _
helpdesk medisch/juridisch: 036 - 5386170 Wouter van Eldik
helpdesk persoonlijke steun: 079 - 3518438 Gerda van Zijl
helpdesk persoonlijke steun: 020 - 4270311 Lenie de Vries
helpdesk lijstbeheer: 0485 - 455590 Marjon Vloet
internet (info, forum, chatbox etc.) www.spws.nl

Hoi beste mensen,
2-3 dagen geleden heb ik mijn introductiebericht geschreven. Er zijn een
paar lieven mensen die hebben gereageerd. Ik heb jullie nog niet
beantwoordt, omdat ik gisteren het allerbelangrijkste gesprek had met mijn
advocaat en de tegenpartij(en). Ik zou jullie vertellen wat er is gebeurt!
Mijn zaak loopt nu negen jaar. Het heeft mij zo veel energie gekost en pijn
gedaan. Ik heb alles gedaan wat de tegenpartij(en) hebben gevraagd. Altijd
meegewerkt.Ook bij onderzoeken die ik onzin vond, bijv.een
psychologischeonderzoek! Alle whiplashpatiënten weten dat whiplash niet
tussen de oren zit! Ik wilde mij goodwill laten zien.
Twee jaar geleden kwam dus eindelijk de eindexpertise en het
beperkingenprofiel en dat naar 7 jaar ziek te zijn, revalidatie 8 maanden, 2
jaar manuele therapie en heel veel andere behandelingen, onderzoeken enz. Ik
was tevreden met het eindresultaat. Nu had ik zwart op wit staan dat ik echt
ziek ben en wat mijn beperkingen zijn. Dat ik nooit meer beter zal worden en
dat ik nooit meer zou kunnen werken.( Ik was in opleiding als
natuurgeneeskundige toen het ongeluk gebeurde). De letselschadezaak kond dus
afgerond worden. Ik kon mijn schadevergoeding krijgen, verlies van
arbeidsinkomen. Ik was tevreden, maar niet voor lang!
De tegenpartij kwam met zon lage slotsum,zo laag dat ik minder dan een
uitkering of een minimumloon te besteden zou hebben per maand. Ik was
woedend! Mijn advocaat wond ook het bedrag veel te laag. Belachelijk!
Toen is mijn advocaat gaan onderhandelen met de tegenpartij(en) Ik heb twee
tegenpartijen, maar dat leg ik uit een ander keer!
Toen hoorde we niets meer. Dat komt bij jullie natuurlijk bekend voor!
Vertragingen, vakanties iemand nieuw op de zaak enz. De vertegenwoordiger
van de tegenpartijen was verdwenen van de aardebol! Hij kwam zelfs niet
opdagen bij de afspraken die hij had staan met mijn advocaat!
Pffffademhalen.
In februari dit jaar krijgen we ineens een gek bericht dat de tegenpartij
tegenstrijdige feiten waren tegengekomen in de eindexpertise! Feiten die
niet klopten. Ik schok en belde gelijk met mijn advocaat om een afspraak te
maken.
En toen hoorde ik het meest schokkend nieuws: Naar 9 jaar en met de
eindexpertise, beperkingenprofiel en het slotsom op tafel hadden de
tegenpartijen besloten om een onderzoeksbureau in te schakelen!!!! Jullie
kunnen niet geloven hoe dat voelde! Ik was en ben stuk daarvan.
Gisteren hadden we het gesprek met de twee heren van de tegenpartijen AXA en
Nationale Nederlanden. Ik zat tussen in mijn advocaat en mijn vriend. Ik was
woedend en gekwetst. Tegenover mij zaten ze en de ene was zeer enthousiast
over de videoband die hij trots op tafel neerlegde. Zo mevrouw we hebben je!
Met een grijns op zijn gezicht!
Ze hebben twee mannen ingeschakeld die twee keer een week Samen mij hebben
gevolgd, gefilmd en gefotografeerd! Het rapport ligt nu naast me op tafel.
Je kunt lezen dat ze ieder ochtend om 7.00 op de stoep hebben gestaan. In
het rapport staat waarneer ik tevoorschijn kom wat ik aan heb en hoe mijn
haar zit! Vervolgens hebben ze mij overal gevolgd bij de bakker, bij de
huisarts toen ik bloemen kocht. Ze waren overal bij. Ik werd woest!
Het allerergste voor mij is dat ik achterkwam dat iemand de Nationale
Nederlanden een anonieme tip hebben gegeven! En dat ze daardoor het
onderzoekbureau hebben ingeschakeld. Het is voor mij onbegrijpelijk. Dat
iemand mij zon pijn wilt doen.
Je ziet niets bijzonder op de video. Je ziet me wel buiten dat ik loop en
dat ik gewone dingen doe. Enn keer op de fiets 8 minuten op weg naar mij
huisarts en lopend naar de winkels
Kijk mevrouw kan wandelen en fietsen!!! Conclusiemevrouw is héél actieve en
dus niet ziek..Schadevergoeding van tafel geveegd..en nu tja procederen??
Dit werd een lang verhaal..Ik moet nu rusten. Ik vertel de rest later..
Veel groeten
Maj Brittt

HI Fran
Just to let you know we will all be thinking of you on Tuesday.

Good luck, Fran. I'll be in on Tuesday afternoon to keep you company,
Trish

Well everyone, tomorrow morning we travel to Liverpool and all being well will be admitted for surgery on Tuesady. He started sneezing yesterday, but so far it doesn't seem to have developed into anything (fingers crossed!)

Send us some positive thoughts on the day if you have the time (maybe a bit of cosmic ordering too)., and we will be back to tell you all the gory details soon!

Thanks for being there everyone, it really helps.

Fran and Finlay
Georgina Kynman <georgina.kynman@...

Wow - Hannah must have been exhausted after all that! well done for remembering it all!!

Yes I've heard of Portage although Nathan hasn't had it. I did look into it a few months ago - they are very busy at the moment & on reflection I thought that he is probably getting enough stimulation from me & playgroup. My friend's little one has Portage & I took a photocopy of what I think your talking about - it covers ages up to 6 & looks at social skills, cognitive, speech, behaviour etc? It's pretty interesting to look at isn't it?

Haven't an CE centres near us but I will definitely be asking the speech therapist if she feels Nathan would benefit from more ST time - at present he goes to the child development centre once a week for a 2 hour session so I'm guessing the ST probably spends about 20 mins with him? He is coming on but is still struggling to finish his words off so if extra ST will help....

What was the task stuff you mentioned photocopying the other week?

How's the weather up there - wet & miserable here. Nathan's Dad & Granddad have been building a playshed in the pouring rain - they're real troopers!

Georgina x

Hi All

I know how you must of felt Donna. We have on several occasions have had to put up with stares from people (mainly adults who I feel should know better). Because Megans PWS is red rather than purple in the Summer we get people giving us dirty looks as if we have let our child get really sunburnt!!! Children havent been too bad - megan has had a couple of children ask her in school what it is and the teacher has told us that she was about to jump in and explain but Megan handled it well and explained that she has a birthmark on one side and nothing on the other. Really proud when the teacher told me that.

With my other 2 children I have brought them up not to judge people on how they look and to be sensitive to other peoples feelings - whether large, short, tall, white, coloured etc. Everybody has something special about them and they should be treated equally. Its a pity that not everyone has the same opinion.

I feel that it is up to the parents to guide and inform the child about these things - children will point and ask questions which is normal and now whereas I used to get really pissed, I now explain to them that Megan has a birthmark and I usually get the reply of "Oh, OK". and its forgotten.

I have always felt that I didnt want Megan to feel different and I have made a point of telling her that she is beautiful and gorgeous (which she is) ever since she was born and have carried that through and she is confident within herself.

Primary School has been OK, its Secondary School that I will start to worry but I am sure that Megan will rise above whatever comes her way.

Sorry to drag on (as usual).

chantelle
Donna Marshall <forgecottage@...

Hi Christine
My good feeling bubble threatened to burst when some brat screamed in the co-op tonight Look at her purple face
Hannah was oblivious and I gave the mother my best Paddington bear stare
Do you think it would have been petty to scream Look at his ugly mug?
Donna

I Just wanted to say well done to Hanna and Donna. You must be so
pleased. It was good to read about what they do at GOSH, we go next
month on the 11th and I didnt really know what to expect

Hallo Gerda,
Heel simpel: ga naar www.spws.nl, klik op chatbox, klik op direct chatten,
klik op plaatje van whiplash praathuis, accepteer het pop-upvenster, vul je
naam in, klik op connect ,