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Megan has one good working eye which is why she does not qualify to be registered as visually impaired - which we are be thankful for that she does have have some good sight in one eye.

Sorry to see that jacobs sight is not good. But it does look like that you fought to get him all of the necessary support he needs (and I mean fought - seems that everyone has to keep fighting for basic nececssities for their children).

We do see the same consultant and have been since we were handed over by Miss russell eggit at GOSH.

Its very hard for other people to know what your going through and even harder to sum it up in words. This forum is excellent for sounding off any concerns with other parents who are going through the same thing. Really sorry we missed the meeting in August but would love to go to the next one to put a face to a name!!!

Hope jacob and rest of family are fine, now wheres that bottle of wine and bar of chocolate!!

chantelle
Hi Chantelle
It was Jacob's teacher at school that requested the visually impaired team assess him. She ordered him a raised board for his work to go on and he now says he can see things better. She also told us to ask if Jacob could be registered as visually impaired at the eye hospital. When we went on 20\7 we saw a different consultant than usual, when I first mentioned it she said they didn't make the final decision, they filled in a form and sent it off to London where a committee decided. She said she didn't know whether they would class him as sight impaired because his vision wasn't as bad in his left eye but went to speak with another consultant who decided they should do it anyway. We recieved a copy of the completed form (signed by his usual consultant) last week so will just have to wait and see what happens. I don't know whether you can appeal if they decide no?

Jacob has Glaucoma in both eyes, slightly worse in the left eye. He is also longsighted and has a squint in his right eye. His eyesight is very poor in his right eye, it is better in his left but still not great, he is pretty good with his glasses altohugh has been taking them off quite a bit recently so am wondering if his presecription has changed again. I think he has just got used to what he can see.

Do you see the same consultant each time you go to the eye hospital, if not it might be worth asking again as they all seem to have different opinions? Good luck.

Just wanted to say what a great reply to Georgina, you summed up nicely what I was trying to say, but didn't manage to do very well!

Christine x

Hi Fran
as you are expecting a crash there is a possibility you may not have
one!
I think the over riding theme today is that we all feel low at times
and we all cope in different ways (Donna you should visit AA!).As far
as I am concerned, the best way is to talk, even if it is only via a
message board. Often just getting things off your chest can help
enourmously and we all understand where Georgina is coming from.
(Sorry if that sounds a bit hippyish).
Take care
Lynn

I havn't got to the anti-depressant stage (though not far off!), but I echo Lynns comment about feeling a bit lost and not sure what to do with myself anymore once Finn started school. I felt he still had his support network but I was suddenly left alone to cope. A few of you will know I have been low until quite recently, and thinking about it thats probably why. I'm on auto-pilot at present, being normal for Finlay but once surgery is over and he is fine (fingers crossed) I fully expect to crash big time!

Fran
slackkaren <slackkaren@...

have just gone on site, haven't been on for a while. Don't ever feel
that your the only one who ever has these feelings and thoughts. I
think it is a normal part of acceptance and do wonder wheter or not we
ever fully get over the initial momnet they are diagnosed. But I can
reassure you that you will learn to survive Sturge-Weber, I can
honestly say I myself felt the same as you wrote and very often my
husband Gary would have said comments like you husband.
My daughter is 21 and I can honestly say although life would have been
very different the determination she haves makes me something feel
guiltly for thinking what if?
Speaking of how we feel is not a failure it is part of our coping.
I read Lynn's message and I also had to go on anti depressents just to
give me a helping hand.
take care luv karenx

I have talked often to Jenny Denham chair of the Foundation and know
that Dr Srah Aylett has the SWS clinic, it's a shame that all suffers
aren't under the one clinic because so much knowledge would be
achieved from this. Even though my daughter is 21 recently i asked
Jenny if Sarah would be able to offer any assistance/information. It's
a shame you go from paediatric to adult because you are still looking
after a 'child' in years. karen

I would say a bottle of wine and chocolate does the trick!!

chantelle :)
Hi Lynn
I forgot to say that the other thing I find helps is uncorking a nice bottle of red on a Friday night when they are all in bed! lol. Don't know whether anyone else will admit to this.

Chrisitne x

having read about query of glue, i can confirm that baby oil is
definetly the easiest and quickest way to remove all the glue. karen

have just gone on site, haven't been on for a while. Don't ever feel
that your the only one who ever has these feelings and thoughts. I
think it is a normal part of acceptance and do wonder wheter or not we
ever fully get over the initial momnet they are diagnosed. But I can
reassure you that you will learn to survive Sturge-Weber, I can
honestly say I myself felt the same as you wrote and very often my
husband Gary would have said comments like you husband.
My daughter is 21 and I can honestly say although life would have been
very different the determination she haves makes me something feel
guiltly for thinking what if?
Speaking of how we feel is not a failure it is part of our coping.
I read Lynn's message and I also had to go on anti depressents just to
give me a helping hand.
take care luv karenx

Hi Chantelle
that is good news from the point of view of Megan's condition but bad
news from the point of view of support. I am sure you can still get
support from the RNIB or other agencies though.
Good Luck
Lynn

Chantelle,

Finn had a 48 hour EEG a few months ago at Alder Hey. I can't remember how long it was before it was all out but I do remember it wouldn't budge and looked quite bad...but it didn't bother him (easier on boys short hair of course) so I let it work its own way out, I did feel the need to explain to people what it was when we went anywhere though! You are right about using acetate, they also gave us a fine-toothed comb like you use for getting out nits to use with it.

Don't forget to let us know the results of her test! Good luck.

Fran

chantelle grenfell <chantellgren@...

Hi

Just a querie really - megan had an EEG last wednesday and this did not come off until Friday (we were able to go home each day and had to go back the next morning to change the battery). Megan got so worked up when they took the pads off her head because they used acetate and smelt terrible (nail varnish remover) and the nurse mentioned something about special shampoo??? Anyway, after the appt we had lunch, did shopping and because it was such a lovely day took the children to the park. By the time we got back and had tea it was gone 7pm. I then gace megan a bath and then realised that they did not give us anything for megans hair - she has glue all over her head which has dried because she had the EEG on for 2 days. Have any of your children gone home with an EEG and did you have any special shampoo?

Poor megan, have tried to get it out but no good. Will be phonng the hospital now but just wondered if you had encountered this problem!!!

cheers

Chantelle - mum to megan
SWS, PWS, Glaucoma

Hi Lynn

I forgot to say that the other thing I find helps is uncorking a nice bottle of red on a Friday night when they are all in bed! lol. Don't know whether anyone else will admit to this.

Chrisitne x

Hi Chantelle

It was Jacob's teacher at school that requested the visually impaired team assess him. She ordered him a raised board for his work to go on and he now says he can see things better. She also told us to ask if Jacob could be registered as visually impaired at the eye hospital. When we went on 20\7 we saw a different consultant than usual, when I first mentioned it she said they didn't make the final decision, they filled in a form and sent it off to London where a committee decided. She said she didn't know whether they would class him as sight impaired because his vision wasn't as bad in his left eye but went to speak with another consultant who decided they should do it anyway. We recieved a copy of the completed form (signed by his usual consultant) last week so will just have to wait and see what happens. I don't know whether you can appeal if they decide no?

Jacob has Glaucoma in both eyes, slightly worse in the left eye. He is also longsighted and has a squint in his right eye. His eyesight is very poor in his right eye, it is better in his left but still not great, he is pretty good with his glasses altohugh has been taking them off quite a bit recently so am wondering if his presecription has changed again. I think he has just got used to what he can see.

Do you see the same consultant each time you go to the eye hospital, if not it might be worth asking again as they all seem to have different opinions? Good luck.

Just wanted to say what a great reply to Georgina, you summed up nicely what I was trying to say, but didn't manage to do very well!

Christine x

Hi Lynn

thanks for the contact. I have contacted RNIB and thay have said that because Megan has got 1 good eye then she is not visually impaired. The vision in both of megans eye would have to have problems before she could register.

Thanks for getting back so soon.

chantelle
Lynn Buchanan <lb_uk_2k@...

I think that should qualify as visually impaired. I would get in
touch with the RNIB and ask their advice, or ask for a second opinion.
http://www.rnib.org.uk/xpedio/groups/public/documents/code/InternetHom
e.hcsp
Lynn

Hi Christine
I agree with what you say about ahving other things to focus on, it
really does help.
FOR EVERYONE!
There is always the Samaritand to talk to if people don't want to go
to their GP. A friend of mine was a counsellor with them and thay
are highly trained. They are not just for people who are suicidal.
I also know someone who called them as she couldn't get a referral to
a counsellor for some time and she said they really helped. Sounds
drastic but it's not really.
http://www.samaritans.org/
Lynn

Hi
I haven't come across this problem but have you tried warm baby oil?
If you try it, put shampoo on the hair before you add the water to
wash it off, this way the oil is broken down.
Good Luck!
Lynn

Hi

Just a querie really - megan had an EEG last wednesday and this did not come off until Friday (we were able to go home each day and had to go back the next morning to change the battery). Megan got so worked up when they took the pads off her head because they used acetate and smelt terrible (nail varnish remover) and the nurse mentioned something about special shampoo??? Anyway, after the appt we had lunch, did shopping and because it was such a lovely day took the children to the park. By the time we got back and had tea it was gone 7pm. I then gace megan a bath and then realised that they did not give us anything for megans hair - she has glue all over her head which has dried because she had the EEG on for 2 days. Have any of your children gone home with an EEG and did you have any special shampoo?

Poor megan, have tried to get it out but no good. Will be phonng the hospital now but just wondered if you had encountered this problem!!!

cheers

Chantelle - mum to megan

SWS, PWS, Glaucoma

Hi Georgina

My heart went out to you when I read your post. Please don't feel bad for feeling this way, we are all just Mums trying to cope the best we can. It takes a lot of guts to say how you are feeling. We are expected to be all things to all people as mums and it's a bit difficult at times, partucularly witht he extra we are coping with. I still feel like this at times, some days are worse than others. There are times when I go upstairs and cry with the frustration of it all but put on a brave face for my family.

It is impossible not to compare him with his peers but I have tried to just focus on Jacob and celebrate whatever it is that he has achieved, particularly because it will have taken him so much more effort and determination to achieve than his friends. I had to wipe away a tear at school the last week of term as all his freinds were running our with their spelling certificates (167 words!) when Jacob can't even write his name properly. We have been abroad once when things were a bit more stable, we now just go in the UK and the first thing I do is check where the surgery is.

Have you thought of ringing your GP to see if they offer a counselling service, I know this is something I should do but haven't done yet. Sometimes talking to family is just too close to home. I have also found it useful to speak to another Mum at school whose daughter has physical disabilities, the problems are different but it still helps to share them. This group definitely helps.

Another big help to me has been my other 2 children, there is only 22 months between Jacob and Eve (not intentionally) so I have had the other 2 to take my mind off things sometimes. Work also helps because I am an adult here, not just Jacob's Mum. I don't forget about him but it's another focus. I also find that I come bottom of the list so try to find a bit of time to do the things I like doing. It's difficult as we struggle for babysitters and they usually have to be used for our other children when we're at medical appointments.

I read an article in the NCT magazine a couple of years ago called welcome to Holland, it really struck a chord with me as it is an analogy of a mum giving birth but not being in the place she had planned to go to and having to cope with it. I'll see if I can find it and scan it. It made me cry but I really identified with it made me admit to myself how I really felt.

Sorry if this waffles on a bit, I'm just waiting for the Epilepsy nurse to arrive and wanted to reply to you quickly. Jacob's trying to dress himself and can't get the T shirt over his head!

Christine x

Hi Chantelle
Alex is 20 now and people are still telling me 'you have to let him
go some time'. It really annoys me, as you say, they don't
understand. One girl who said it to me has a sister who lives with
her since her mum died. The girl has cerebral palsy following an
accident and she told me she sends her sister, in her electric
wheelchair, to Tecso. I was amazed as the girl can't even talk and
uses a communicator. It was only later that she mentioned that the
carer goes everywhere with her! Not quite the same hey?!
Lynn

Hi Georgina
I am really glad you did post you feelings. You are not a bad parent
and you are not unique.
The way I dealt with things was to go on a crusade to find out as
much as I could and I ended up being one of the original parents who
founded the SWF. My attention was taken up by helping other people
and not dealing with my feelings.
After Alex's surgery I fought to get him back to health and then
again to get him into a relevant school. When he started the school I
suddenly had nothing to fight for. I went to my Doctor because I
couldn't sleep and ended up crying, I had np idea why. I ended up on
anti depressants for a while and I was so embarrassed that I was on
medication, I felt like I should be able to cope. I know now that I
am only human. We are not robots and we need to address our feelings
not bury them.
Do you have any other children? I think the fact that Alex has three
sisters kept me from dwelling on things too much, I just had to get
on with it. I think if Alex had been an only child it would have
been more difficult not to dwell on things.
Have you considered going to see your Doctor? You may be suffering
from depression and you may benefit from seeing a counsellor. I know
it sounds scary but you obviously need some support. When you feel
this bad it is hard to get things in proportion and a counsellor can
help you work through your feelings.
You are welcome to give me a call if you think it will help, my
number is 0151-259-2393.
Don't forget, you are not alone and you are not a bad parent, we all
have bad times.
Take care
Lynn

Dear Georgina

Really sorry to hear that you are feeling low at the moment. I do understand why you are struggling to come to term with SWS - think that it will always be in the the back of your mind whether you manage to cope with it . The one thing that I have found particularly hard is that with SWS you never know what will happen (whether things will get worse in the future and to what degree). I can cope if I know what to expect but you dont get that with SWS. I think its the my child is OK now thing (which could be for months even years) and then all of a sudden they might have a seizure which could impare the quality of life in some way and then all of the worries about SWS come back.

Have you and family had any type of counselling? Might be a good idea to request it from your doctor. This was not offered to us when megan was diagnosed which I feel is not right to be honest. I have also requested that megan sees a Psychologist because of all of the hospitall procedures/visits she has had. Megan still gets very anxious when we go into hospital so hoping that this might help. I had to have 2 1/2 months off work when Megan was diagnosed as I could not come to terms with it (been a rocky 5 1/2 yrs prior to Megan being diagnosed which didn't help) and because I work for the NHS I arranged for myself to see a counsellor which did help me. I still get anxious/worried about things even more so at the moment as per my previous email wondering whether Megan was having seizures (megan had an EEG last week so awaiting results at the moment).

We went to a family BBQ this weekend and some of the children wanted to go to the park (teenagers aswell) and Megan asked if she could go (park is about 500 yrds from house) and I said no. My sister-in-law said that I need to give megan some independence and I said that I do but she is only 5 1/2yrs old and that seeing as no adults were going then she couldnt go. My sister-in-law then said that if anything happened they would phone!!! I said to her that they would not know what to do if megan had a seizure (hell, I dont know what to do really) and that time is crucial if megan had one (especially if it was a bad one) and knowing our luck megan would go to the park and have one, so I said no. Made to feel over protective etc but at the end of the day no one knows what we have been through/and still going through emotionally except the parents who have children with serious conidtions.

How is nathan at the moment? has he had some kind of set back for you to feel this way?I dont think badly of you - your just a mum who is trying to deal with the fact that your son has SWS. Everything that you are feeling is natural - we all get down days. On reading your posts I always thought that you have coped extremely well with everything. Think women in general put on a brave face when coping with things in life but underneath it all we all worry.

My hubby is coping well and we have spoken about the difference in the way we have coped/still cope (must be a man thing!!).

It can be draining for everyone with all of the meds, hospital visits, emotional strain etc but I do try to put things in perspective in that there are alot of children out there who have to deal with things alot worse than what Megan is going through.

You have been through a hell of a lot emotionally/mentally and everyone has their limit. See your GP about seeing a counsellor - think its good to talk to someone neutral about this who can make you see that what your feeling is prefectly natural and that your doing a brilliant job with Nathan.

Keep smiling, georgina. If you need to talk then I could alway give you my number or just email me.

Take care.

Chantelle x
Georgina Kynman <georgina.kynman@...

Hi everyone
Can't quite believe I am doing this & hope you don't think badly of
me but I am feeling a bit down at the mo....
Although Nathan is nearly 3 1/2 I think I am still struggling to
accept his condition and to cope with the worry that comes with it.
He is a lovely little boy, very funny, loving and clever but I can't
help feeling sad when we're with children that can just get on and
do things. It breaks my heart when I see kids younger than Nathan
who can get around without a seond thought and are talking really
well. Friends are planning to go abroad on holiday next year & I
just can;t see that we'll ever do that. I kind of feel that there is
no real enjoyment left in life & that i'll never be happy again. I
know that sounds incredibly selfish. Don;t get me wrong as Nathan is
my number 1 priority & i love him to bits. My husband has a much
more balanced attitude and says if Nathan is happy then he's happy.
I know hes right but am just finding things hard.
I wasn;t sure whether to post this - Lynn I will probaly ask you to
delete this from the records in a few months LOL.
Thanks for listening & hope you guys don;t think I am a terrible
person. I know some of you are coping with more than I am.
Georgina x

Georgina, your post made me cry. There is no right and wrong way to
feel sweetheart, as I always say I didn't apply for this job and I do
it the best I can.
I understand totally how you feel. I hate summer because it is full
of people out and about with their families, going on holiday, etc
etc. Please don't beat up on yourself for how you feel. I am sorry
but I don't know an awful lot about Nathan, but I am sure you are a
great mum and as you say he is a happy little boy, but NOT the little
boy you were expecting. That never goes, you just find ways of
managing it. I am 16 years down the line now and faced with my
friends children doing GCSE's, getting boy/girl friends and moving
on, my Luke will never do any of those things either and like you
that breaks my heart. Do you have people you can talk to about how
you feel? It is vitally important to be able to talk it through.
You are not a bad person or a bad mother, you are just a mum coping
with tonnes more than most of your friends.
Sorry if this is a bit rambling, I should have thought more before
replying but I just wanted to say I know how you feel
with love
Shelley xxx

Hi Lynn/Rachael

I don't think things have changed much in 20 years then! We found out what we know about SWS on the internet. Hannah was born at 8pm on Saturday 21 Feb 2004 and we went home at midday the next day having been told she had a PWS which was purely cosmetic and could cause no further complications (this was after first being told her PWS, which is over 50% of her body, was a bruise as she was 10lbs 0.5 oz).

Luckily I still knew a Heath Visitor from where we had lived when Jack was a baby. I met her shortly after Hannah was born and she told me there was a boy living in her street, who is about 18 now, and who had SWS. She arranged for me to meet his Mum - to be honest this was all a bit terrifying since I was still in denial that Hannah could have this.

Unfortunately, you really have to shout to get help and although it totally goes against my nature, I am glad I have done it for Hannah's benefit. At one point the list of professionals involved with her was ridiculous and a total pain to meet with them all regularly!!

Rachael - you should really see a Community Paediatrician as well as GOSH (or maybe after you see them) - they are the person who oganises any required community services such as Physio, OT, Speech and Lang etc). Also if you make contact with Social Work, they can help you fill out a DLA application. Remember none of these people will probably know anything about SWS - you are the expert - so you can tell them what you need.

We have an appointment at GOSH on Tuesday this week so flying from Glasgow to Heathrow. Hannah will be old enough this time to be really excited about it

Donna

Hi everyone
Can't quite believe I am doing this & hope you don't think badly of
me but I am feeling a bit down at the mo....
Although Nathan is nearly 3 1/2 I think I am still struggling to
accept his condition and to cope with the worry that comes with it.
He is a lovely little boy, very funny, loving and clever but I can't
help feeling sad when we're with children that can just get on and
do things. It breaks my heart when I see kids younger than Nathan
who can get around without a seond thought and are talking really
well. Friends are planning to go abroad on holiday next year & I
just can;t see that we'll ever do that. I kind of feel that there is
no real enjoyment left in life & that i'll never be happy again. I
know that sounds incredibly selfish. Don;t get me wrong as Nathan is
my number 1 priority & i love him to bits. My husband has a much
more balanced attitude and says if Nathan is happy then he's happy.
I know hes right but am just finding things hard.
I wasn;t sure whether to post this - Lynn I will probaly ask you to
delete this from the records in a few months LOL.
Thanks for listening & hope you guys don;t think I am a terrible
person. I know some of you are coping with more than I am.
Georgina x

Hi all
here are some links you may find useful:
http://www.hemihelp.org.uk/
http://www.scope.org.uk/
http://www.dlf.org.uk/?gclid=CNK7mdHc740CFQHalAodiGAhMg
http://www.direct.gov.uk/en/DisabledPeople/index.htm?
cids=Google_PPC&cre=DPAC_Franchise
www.cpsport.org
http://www.familyfund.org.uk/newsite/default.asp
http://www.everychildmatters.gov.uk/socialcare/disabledchildren/support/
http://www.cafamily.org.uk/helpline.html
Happy Surfing
Lynn

Hi Rachael
we were given a diagnosis for Alex and then left to it, but that was 20
years ago, I hoped that things had improved by now - obviously not!
The majority of information I received was via other parents in the Toy
Library, so if there is somewhere you can go which caters for children
with any kind of disability you may find out what is available in your
area.
Good Luck
Lynn

I have been reading all your messages and there is some really usefull
information there. We have not seen by a health visitor or had any kind
of advise from anybody. We seem to have been given a diagnosis and then
just left to it, most of the things we know about SWS we have found
outselves on the internet. We have recieved Miles' apointment for Great
Ormond Street so hopefully we will learn more then.

Hi Fran, Donna and Lynn

Thanks for the info, it is all really useful. It seems that it is a bit of a postcode lottery, particularly given the problems we are having at the moment getting a statement for Jacob. The only 'professional' who has ever suggested anything was my health visitor who suggested claiming DLA, we didn't at first but then realised that it would be wise to. We just get the lower mobility rate at present, we have been adivsed to apply for a blue badge even though we don't qualify automatically, it's probably still worth applying. I need to get round to it. I work 24 hrs so can't apply for carers allowance.

On a more positive note, Jacob's teacher requested the visually impaired team assess him and he now has a raised board to use for school and it seems to has made a bit of a difference, he says he can see things better.

Fran you told me about Family Fund and I had a look on the website, the only problem being they do take into account your income (rightly so) and we are over the threshold because they look at gross salary. They also don't take into account the fact that my part time salary is virtually extinguished by child care fees! I work mainly for my sanity (?), roll on Eve starting school. We'd be able to apply for things if they took this into consideration.

We are also told we could apply for a cimema card for Jacob at a cost of £5 for 3 years, this means whoever accompanies him can get in free, we just pay for his ticket. I have the details somewhere if anyone wants to know more. Swimming is also free in our area for the child and their carer, you just have to apply for a local Smartcard.

Thanks for all your advice, I'll let you know when we get the appointment through and how successful (or otherwise) it is!

Christine x

Hi Donna
the Toy Library was a place (still is actually) where families of
children with a disability could meet up for mutual support and to
borrow toys. Many of the toys are specialist toys and quite costly
so it was very useful. You can borrow toys for your other children
too, not just the disabled child. I have posted a link to the
National Association of Toy Libraries for you to have a look.
http://www.natll.org.uk/
Lynn

What is a Toy Library? - that sounds good!

Donna

Hi Christine
have you thought of asking for a buggy on Freecycle? It is hard to
know what to do with something like that when you no longer need it
so someone may have one in their shed or loft.
You do not sound mercenery at all, we used to go to the local Toy
Library and that is where we heard about our entitlement via other
parents. I don't think we ever heard of anything we were eligible
for from a 'professional'.
Lynn

Lieve Maybritt,
Ik heb daar helaas al vaker van gehoord. Maar volgens mijn advocaat zeggen
zulke beelden niks. Ik had ook het idee gevolgd te worden, was niet zo, maar
daar werd zij woest over en volgens haar zijn deze beelden illegaal en niet
te gebruiken voor de wet. Ik hoop dat dit verhaal klopt maar ik wilde toch
proberen je een beetje te steunen.
In jouw geval zou ik naar de media stappen. Zodra zo'n verhaal in bv de
Telegraaf staat piepen ze ineens heel anders of bij hart van nederland of
nova, kunnen ze gelijk de beelden laten zien en laten zien wat een smerige
praktijken verzekeringen er op na houden. Ik wil je er zelfs meehelpen omdat
ik ook een paar staaltjes van smerige truucs heb meegemaakt en ik het ook
helemaal zat ben. Misschien als er nog meer mensen zijn die smerig behandeld
worden we met een veelvoud van 2 een vuistr kunnen maken.
Heel veel sterkte,
liefs
Anne
_ _ _ _ _ _ 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 Donna

Thanks for the info. We have had to consider getting one, mainly for family days out or longer trips as if Jacob has a seizure when we are out we simply can't carry him, he is so heavy. There are also times when he is really tired and just flops on the floor, I think it's a side effect of the medication. The regular McLaren buggy is virtually on the point of colllapse.

I'm keeping my fingers crossed as the OT rang yesterday and saif they would do a referral to wheelchair services although he will have to be assessed and he may be refused. The OT seemed to understand why we needed one although I don't think wheelchair services do as she said (to the OT) why would he need a buggy when he's had a seizure surely they'd be staying in the house! Unfortunately he's not considerate enough to just have them when we are at home. lol.

I feel I have had a lot of useful info from this group as I don't always know what's available, we could do with producing some kind of checklist so we are all getting what we are entitled to. Does that sound mercenary because I don't mean it to!

Christine x

Strange creatures OT'S ! At one time we had to really nag to get
anything but recently we've been inundated with offers of equipment etc
without even asking. We've just had an hydraulic shower stretcher
installed (after waiting only 6 weeks!) and a man came today to measure
up for a ceiling hoist in the bathroom. Maybe Liverpool City Council
have won the lottery!
Trish

CPB twijfelt over afschaffen WAO-boete werkgevers. 06 augustus 2004
Het Centraal Planbureau (CPB) zet vraagtekens bij de kabinetsplannen om de
zogeheten Pemba-boete in een nieuw WAO-stelsel af te schaffen.
Werkgevers betalen sinds 1998 een hogere premie naarmate ze meer personeel
in de WAO laten verdwijnen. Uit CPB-onderzoek blijkt dat de WAO-instroom bij
werkgevers een jaar nadat ze de boete hebben gekregen, gemiddeld met circa
15 procent is gedaald.
Het kabinet wil in het nieuwe stelsel de WAO alleen toegankelijk maken voor
werknemers die volledig en duurzaam arbeidsongeschikt worden verklaard.
Daarbij wil het de Pemba-boete afschaffen als de jaarlijkse instroom daalt
tot 25.000 personen of lager. ,,Of dat verstandig is, valt in twijfel te
trekken'', aldus CPB-onderzoeker P. Koning donderdag.
Koning spreekt van een 'kip ei'-discussie. ,,Want je schaft enerzijds de
regeling af omdat de instroom daalt. Met als risico dat de instroom
vervolgens weer stijgt, omdat mede door die regeling de instroom daalde.''
Volgens de CPB-onderzoeker heeft de Pemba-boete bij werkgevers meer het
bewustzijn vergroot dat ze meer aan preventie tegen uitval door ziekte
moeten doen. ,,Blijkbaar moeten werkgevers eerst geprikkeld worden. Vooral
de kleinere bedrijven zijn door premieverhogingen wakker geschud. Grotere
ondernemingen hadden de gevolgen van de Pemba meer zien aankomen en eerder
preventieve maatregelen genomen.''
Het effect van de WAO-boete wordt volgens Koning makkelijk onderschat, omdat
het enige tijd kost voordat de uitwerking van preventieve maatregelen te
zien is. ,,De kans is dan ook groot dat over een paar jaar het effect nog
wel groter is dan die gemiddeld 15 procent lagere instroom.''
MKB-Nederland noemt het CPB-onderzoek misplaatst en achterhaald. Coördinator
sociaal beleid A. van Delft van de organisatie voor middelgrote en kleine
ondernemingen wijst erop dat werkgevers vanaf dit jaar werknemers ook in hun
tweede ziektejaar doorbetalen voordat deze voor de WAO in aanmerking komen.
,,Met de Pemba erbij zouden werkgevers onevenredig belast worden. In het
beleid wordt nu naar een meer juiste balans gezocht, omdat ook van
werknemers inzet wordt verwacht aan het werk te blijven of weer te komen'',
aldus Van Delft. Werknemers worden met het huidige beleid volgens hem
geprikkeld, omdat ze in het tweede ziektejaar nog maar 70 procent van het
loon ontvangen.
Bron: ANP
vriendelijke groeten
Wouter van Eldik
organisatie & informatie
Whiplash Internetwerken
_ _ _ _ _ _ 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 Fran

Thanks, I did mention it to her but she said it was a bit difficult as he didn't need it all the time. She said we could fill the form in but she didn't hold out much hope that we would be successful. She said they offer wheelchairs for children over 3 rather than buggies. I'm not sure why as the Maclaren Major is tested up to about 50 or 60 kg isn't it? I'll perhaps mention it again when we see her next.

Hope you are all well, we did have to do a detour to Ikea on Saturday for the dreaded meatballs and managed to purchase a few other things whilst we were there!!

Christine x

Christine,

On the subject of OT, that was the department we went through to get our major buggy. Perhaps you could try mentioning it to them next time - it's worth a try.

Fran
Hi Donna
It sounds a fantastic place, what a shame though that you have to give up some services in order to gain others. It's so difficult when you have to fight for everything.

Will let you know how we get on with the scissors, he seemed quite impressed with them when he was waving them about this morning. It's the first time we have seen the OT, she will go into school to assess him properly as he wasn't in a co-operative mood this morning. Hardly surprising as they were using a room that is usually used as a nursery so had exciting toys all around the room and she expected him to sit still and co-operate, no chance!! There do seem to be quite a few things she can help him with so I wish I'd asked to be referred earlier, although I think his paediatrician should have suggested it a long time ago.

Christine

Hi Antonia

Lyme Regis is probably a bit far for us (7 hours each way according to The AA!!)

Hannah's tummy is much better thanks - she spent Saturday night pretty hot (39.6) so I was dosing her up on Neurofen. Over 38 used to always spell 2 weeks in Yorkhill for us - it would be lovely to think that the worry of this could be behind us. It used to be that Neurofen made Hannah sick and so getting her temp down was a bit of a trial. She was back to normal by Sunday and we went swimming. The local pool have a quiet time where you can take 2 kids under age 8. Jack can touch the bottom now so I took them both and they loved it.

Today we dodged showers at Drumlanrig Castle (fantastic place about 20 mins from us). I took Jack & Hannah's bikes and they had a cycle around the grounds (and then carrot cake at the café!). I bought a special needs trike for Hannah on Ebay and its fantastic. Does anyone else have one of these?? It has lots of straps and supports and I have gradually been removing a few. The pedals have footplates to strap her feet on and it is really highly geared so it is easy to pedal. Hannah doesn't really pedal anywhere herself yet - I have a parent pole and can pull her from the front and steer it and her wee legs just go round and round! I nearly broke my back lifting it in and out of the car though!

Donna

Pemba zorgt voor lagere WAO-instroom
Wanneer de WAO-premie die werkgevers betalen, afhangt van het aantal eigen
werknemers dat arbeidsongeschikt raakt, doen werkgevers meer aan preventie
en daalt de WAO-instroom substantieel. Het is daarom raadzaam ook in het
nieuwe WAO-stelsel een vorm van premiedifferentiatie op te nemen. Dat blijkt
uit onderzoek van het Centraal Planbureau (CPB). Het kabinet is van plan het
huidige WAO-stelsel met ingang van 2006 te vervangen door de
Inkomensvoorziening Volledig Arbeidsongeschikten (IVA) en de regeling
Werkhervatting Gedeeltelijk Arbeidsgeschikten (WGA). In het Najaarsoverleg
in 2003 is afgesproken dat Pemba zal worden afgeschaft als de instroom in de
Inkomensvoorziening Volledig Arbeidsongeschikten onder de 25.000 blijft en
er geen loonaanvullingen in het tweede ziektejaar worden afgesproken.
Volgens CPB-onderzoeker P. Koning blijkt uit het onderzoek echter dat het
kabinet door het afschaffen van Pemba het risico loopt dat de instroom weer
toeneemt.
bron: staatscourant 5-8-2004
vriendelijke groeten
Wouter van Eldik
organisatie & informatie
Whiplash Internetwerken
_ _ _ _ _ _ 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, Fran, Christine and Ingrid
I am interested to know what the dad's felt about the get together on

Lynn,

I have made Sam drive me to two meetings now, one was at Christines house a few weeks ago. Both times he has been reluctant (worried about seeing other children I think) but both times has come away saying that he actually enjoyed himself. He gets on well with Christines husband Steve, enjoyed your husbands company also (he was telling me some of his stories on the way home!), and he also commented that he would have liked to get to know Ingrids husband better (sorry, I am awful with names) - afterwards I think I remember Ingrid saying something about her hubby going to Afganistan? Does this mean he's in the army? If so, then thats why Sam felt a bit of a connection I think as he is an ex-guardsman. I don't think men like to share their innermost feelings too freely, but it has done Sam good to talk with others who truely understand...he can probably say things to the other blokes that he can't even say to me. We cope in very different ways. On the whole it was a very
positive experience for both of us.

Fran
Lynn Buchanan <lb_uk_2k@...

Hi, Fran, Christine and Ingrid
I am interested to know what the dad's felt about the get together on

Hi Georgina
I have named them all now, I did do it originally but had problems so had to start again. Hope to see you next time.
Lynn

Hi Antonia
we would love to come down next August. If you would like to come
back to Liverpool anytime we would love to show you around. Max is
lovely and it would be good to get to know him better.
Take care
Lynn, Colin & Alex

hi lynn

thanks for posting the pictures - would you have chance to say who's who in each picture? i recognise some but not others and would be nice to put a face to a name.

thanks

Georgina

Hi all,
I really enjoyed Saturday, it was great to meet everyone and chat.
Thanks for organising the day, Lynn. I hope those who couldn't make it
will be able to next time.
Would any one like to come down to Lyme Regis, Uplyme for a get
together next August? I can see if the village hall is suitable and
available.
I only regret not arranging to stay one more night & perhaps driving in
to Liverpool to do some sightseeing on Sunday. Never mind, there'll be
other opportunities. The Premier Travel Inn, Tarbock where we stayed
was super, I can recommend it.
The traffic was fine on the way home & Max & I got back at 7pm which
was perfect timing for Max to splash in the bath & fall into bed.
Donna, I hope Hannah's tummy is better. Trish, thanks for giving me the
name of the patches, I'll ask Max's paediatrician what she thinks.
Fran, I'll be thinking of you & Finlay in two week's time.
The photos are good, unfortunately I didn't take any.
Antonia

Hi all
I finally managed to get my pics on! Hope you like them Shelley.
Lynn

Thanks Lynn

That was good of you to remember me asking you about that.

I think I will order some of the spring loaded left handed scissors and see how she gets on with them. Mark thinks the idea of Hannah with a pair of scissors is pretty terrifying

Donna

Hi
it was lovely to meet all of you too, keep us up to date with Sophie's
condition.
Take care
Lynn

Hi All,
Many Thanks to Lynn for organising a great day on Saturday....can't
wait for the next one.
Fran - let me know how the sugery goes, we are hoping to get Sophie's
done asap now after her recent seizures.
Donna - Hope Hannah is feeling better now.
It was really good to meet everyone.
Take Care
Katie, Jonathan & Sophie x

Hi Donna
here are some links which may help you find something to hold paper for
Hannah. If you can't find anything there is an organisation, Remap,
who will make it for you.
www.anythingleft-handed.co.uk
www.remap-scotland.org
You can also have a look at the site for the Disabled Living Centre.
Good Luck
Lynn

Hi Georgina

Hannah just had a S&L assessment yesterday - I thought this might be of interest to you as Hannah and Nathan are exactly the same age!!

Hannah has had a S&L Assistant coming to the house to work with her for an hour a week. I shouted (very loudly) for this and got them to agree. The lady was going into the nursery to work with Hannah but this wasn't working too well as Hannah saw her as the big baddie who took her away from her pals and her toys to work! It works great at home and even better when I escape off with some excuse about checking the washing (!) and leave her to it!

They showed her lots of pages with pictures and one, two and three word levels then would say, for example, can you show me where the man is washing the car. There would be 4 pictures with a woman washing a car, a man sitting in a car, a man washing his face etc and they would see whether she could follow the 3 words of man, washing and car. She did really well and was consistently at 2 word level with some success at 3 word level. She is using 4 word sentences and her attention and listening has got much better in last 2 months - paid attention to a task for 20 mins (used to be about 2 secs!).

She has some sound system things to correct with time (I think `p' and `b') but some might be developmental as her palate is quite `squint' with her PWS.

Her S&L has taken a major leap forward in the last couple of months and she now puts the end on words e.g. `dog' used to be `doh'. Songs are great for helping S&L and I sing crazy songs all the time about brushing Hannah's teeth or sitting up straight. If anyone could hear me, they would presume I had lost the plot! Singing `Hannah did a pee-pee' to the tune of The Farmer's in the Den definitely classes you as a bit bonkers!

Hannah also says `me; instead of `I' and `mine' instead of `my' so a sentence might sound like `Me get mine cup'. I always try and repeat things back correctly without saying she is wrong. It can be a bit hilarious when I repeat `I'll get my cup' and she says `No, me get it'!!

She has left me some tasks to work on with her - involving a teddy and a dolly and getting them dressed. Have you had any S&L input like this? I am sure I could photocopy some of the task stuff if it would help.

I think all children are completely different and do different things at different times. I had a wee look on the internet to see if there was any guidance for speech at different ages. I found this on www.ican.org.uk:

What a typical child will be Doing: 3 to 4 years

Children will be actively learning language - being inquisitive and asking many questions.

Children will develop language skills at different rates, but at this stage, typically children will be:
* listening to longer stories than before
* understanding and often using colour, number and time related words, for example, 'red' car, 'three' fingers and 'yesterday/tomorrow'.
* using longer sentences and linking these sentences together
* describing events that have already happened - 'we went park'
* enjoying make believe play
* starting to like simple jokes
* continuing to ask many questions
* still making mistakes with tense for example saying 'runned' for ran and 'swimmed' for swam
* having a few difficulties with a small number of sounds - for example r/w/l, f/th and s/sh/ch/dz

Here are some simple ideas to encourage children around this stage
* having a special time to talk about the day can be useful as it gives them a time to talk. Talking about what has happened that day will help your child's memory skills. It also helps them to talk about things they cannot immediately see and to talk about the things which happened in the past.
* wherever possible, use pictures or objects to aid children's attention and interest, for example, pictures in books, puppets acting out stories or gestures and facial expressions to support questions.
* talk about or play games involving opposites like 'on and off' or 'big and little'
* joining your child in pretend play - let the child take the lead and see what their imagination brings. It will help you expand their language beyond what they can immediately see and develops their creativity. Try to comment on what they are saying and doing rather than asking lots of questions. This not only reinforces their language skills, but also shows them that you are interested and listening to them.
* reversing roles with a child can be great fun for them - where they are the 'mummy' or the 'teacher' and asking adults to do things. This sort of thing makes using language fun and broadens their use of language to new situations.
* talking about time and sequences - play with and talk about sequences of coloured bricks or shapes as well as numbers and days of the week

Donna (Mum to Hannah in Scotland)

Hi Georgina
I can't really remember if Alex had a problem with his speech, I don't
think it was his speech as much as his mouth though. We went to see a
speech therapist who said the right side of his mouth was weak and he
used to dribble a lot! I think having three sisters maybe helped his
speech along too. I think all kids, SWS or not, vary in their speech
development don't they?
Lynn

Hi Fran
sorry your holiday didn't go as planned, that's often the way though
isn't it?
Don't worry about entertaining the children, I have toys, DVDs,
music, drawing paper and crayons, I was a bit unsure of bringing felt
pens in case of accidents but if you all think its ok then bring some.
Sorry I don't have any pom poms Trish!
Is everybody still coming on Saturday, I was beginning to get a bit
worried as I hadn't heard from anyone!
Lynn X

You are right Trish, everyone has been so quiet! My excuse is we have been away for a week on holiday - we went to Centre Parcs at Longleat, the place was lovely but unfortunately we were all poorly! I feel so sorry for the children, after promising them a fantastic time for weeks we totally let them down but it was out of our control. Never mind, these things happen...we can laugh about it now we are home and feeling back to normal...Finlay was the only one who stayed well so thats a blessing!

I am so looking forward to seeing everyone on Saturday, I am trying hard to think of ways to amuse the children!

See you all there!

Fran
fedupnow <fedupnow@...

Everyone's been quiet lately- hope you're all ok! Really looking
forward to meeting people on Saturday
Trish x

Everyone's been quiet lately- hope you're all ok! Really looking
forward to meeting people on Saturday
Trish x

Hi everyone
Just after some feedback about speech development. Nathan's speech is
delayed although improving all the time & I just wondered if and how
your kids had been affected.
Thanks
Georgina, mum to Nathan 3

Hi Rachael

Welcome to the group!

Hannah's eye pressures have been measured 3 times under GA and have been around 14/16. I think (but don't know why I think this!) that under 20 is OK - I could be completely wrong!

I understood that the reason Hannah is at risk of glaucoma is because of the enlarged blood vessels in her eyes. They cause poor drainage and therefore increased risk of elevated pressure. If Miles does not have a PWS then he doesn't have the abnormal blood vessels causing the risk of increased pressure?? But it is good that they will check it every year just to be on the safe side.

I look forward to meeting you (and everyone else) in August. We live in Scotland and my daughter, Hannah, is 3. She had a hemispherectomy in March last year.

Speak to you soon

Donna

Hi Donna
I haven't checked the page for a while and your message was waiting
approval, it came in as spam for some reason. Glad your news was
good, it took a long long time to get a decent reading from Alex!
Lynn X

Hello everyone

Just a quick note to say Hannah had a pressure check under GA yesterday (I will never get used to the look in her eyes when I am helping to hold her down as they hold a mask over her face - truly awful!)

Her pressures were 14 and 16 (yeah!) and the Consultant said in his experience, now that we have had 3 consistently in range readings, she is probably out of danger for early glaucoma development. Apparently the next riskiest time is age 8/9/10

Sorry not been emailing anyone very much - we run a wedding photography business and this time of year, I hardly have enough time to breathe!

Regards

Donna

what time is the meeting on the 4th love karenx

De effectiviteit van medicatie bij ongecompliceerde nekklachten
Maandag 1 December, 2003
Inleiding
Hoewel medicijnen als pijnstillers, spierverslappers of
ontstekingsremmers veel worden voorgeschreven, is weinig onderzoek gedaan
naar de effectiviteit van deze medicaties bij ongecompliceerde nekklachten.
Bij gerandomiseerde onderzoeken naar de effectiviteit van andere
interventies zijn pijnstillers of NSAIDs vaak een aanvullende behandeling.
Het is echter niet mogelijk de effecten van deze medicijnen apart te
beoordelen. Het bewijs voor de effectiviteit van medicaties is gebaseerd op
gegevens uit drie systematische reviews (Spitzer et al., 1995; Aker et al.,
1996; Bogduk, 2000), aangevuld met een later verschenen gerandomiseerd
onderzoek (Bose, 1999).
Bewijs
De meeste studies die opgenomen zijn in de drie reviews includeren
patiënten met andere aandoeningen zoals rugklachten en acute whiplash. De
toepasbaarheid van de resultaten op patiënten met ongecompliceerde
nekklachten is wellicht beperkt. De effectiviteit van eenvoudige
pijnstillers (paracetamol, opiaten), orale NSAIDs en antidepressiva bij
ongecompliceerde nekklachten is niet onderzocht. Het bewijs voor de
effectiviteit van spierverslappers/benzodiazepines bij ongecompliceerde
nekklachten is onduidelijk door de diversiteit van de onderzochte populatie.
Aker et al. (1996) includeerden in hun review twee gerandomiseerde
onderzoeken. Deze studies vonden allebei dat na twee weken gebruik
cyclobenzaprine de pijnklachten sterker verminderde dan diazepam of een
placebo. Gegevens over het verdere verloop van pijn zijn echter niet
beschreven. Bose (1999) vond dat het gebruik van Eperisone bij chronische
nekklachten na zes weken tot een betere pijnbeheersing leidde dan een
placebo.
Bijwerkingen
Van eenvoudige pijnstillers zijn geen schadelijke bijwerkingen
gerapporteerd. De gebruikte studies vonden enkele nadelige effecten van
spierverslappers/benzodiapezines, waaronder slapheid, duizeligheid, dufheid
en maagproblemen bij vier procent van de patiënten die hiermee behandeld
waren. Een literatuurstudie liet aan de hand van indirecte vergelijkingen
van bijwerkingen van manipulatie en van NSAIDs zien dat de kans op ernstige
schade bij het gebruik van orale NSAIDs aanzienlijk groter is dan bij
manipulatie (Dabbs & Lauretti, 1995).
Conclusie
De effectiviteit van medicijnen als pijnstillers, NSAIDs en
antidepressiva bij ongecompliceerde nekklachten is onbekend, er is geen
gerandomiseerd onderzoek naar gedaan. De effectiviteit van
spierverslappers/benzodiazepines is onduidelijk.
Bron
Clinical Evidence 2003, British Medical Journal;
Laatste update: mei 2002
Referenties
- Aker PD, Gross AR, Goldsmith CH, et al. Conservative management of
mechanical neck pain: systematic overview and meta-analysis. BMJ
1996;313:1291-1296. [PubMed]
- Bogduk N. Whiplash: why pay for what does not work? J Musculoskel
Pain 2000;8:29-53.
- Bose K. The efficacy and safety of eperisone in patients with
cervical spondylosis: results of a randomised double-blind
placebo-controlled trial. Meth Find Exp Clin Pharmacol 1999;21:209-213.
- Dabbs V, Lauretti WJ. A risk assessment of cervical manipulation vs
NSAIDS for the treatment of neck pain. J Manipulative Physiol Ther
1995;18:530-536. [PubMed]
- Spitzer WO, Skovron ML, Salmi LR, et al. Scientific monograph of the
Quebec Task Force on whiplash-associated disorders: redefining "whiplash"
and its management. Spine 1995;20(suppl 8):1-73.
_ _ _ _ _ _ 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 all
below is the address for the meeting room in August.
The Old Schoolhouse
St John's Road
Huyton
L36 0UX
Is everybody OK with a hotel booking? If you have any problems just
let me know. Also, if anybody needs a lift I am happy to oblige.
Lynn

pleased to hear danny is doing well, my son paul is not due back out
until sept/oct 08, although it is hard them doing this it is something
you just have to get on with, do you agree, paul's girlfriend Jo
manages very well, they are just at the end process of buying a house
in new ferry, they decided better to start up here even though his
base is plymouth because he isn't going to be there much next year,
courses, norway etc. what reg is your husband in. looking forward to
meeting everyone on 4th august,karenx

hi Karen
Danny had his op in feb 06 at Alder Hey by Mr O'brien. danny goes to
greenleas Primary with a one-to-one assistant full time, we chose this
instead of ellery park to see how he would get on in mainstream and so
far so good! He is only in his first year though but he loves school...
my husband is due to afgan in Sept this year... glad your son is safe
home now! See you in August. Ingrid

have just been online and noticed that you live in wallasey, we live
in Bromborough, When did danny have his op, our Chrisitna is 21,
which school is he at, our christina went to elleray park, which is
in wallasey.
which regiment is your husband in? our son paul is 23 and in 29
commando's, he's just come back form 6mths in afghan,
we are going on 4th so will meet you, karen

Hi All
We would love to come over for the meeting - i have pencilled it in my
diary and also offer any help you need. We are only coming from
Wallasey (over the water) so let me know...
also Fran - glad you finally have a date for finns op - you will be
well and truly on your countdown when we meet. We will arrange also to
visit you guys during that time if you want us to... x
Anyway certainly meeting our Dan will encourage you and things coz he
is doing so very well since his op...
Lynn we will be 2 adults, danny (5) and rory (7 mnths)... Thankyou xx

Hi everyone,

Just wanted to share our news that after much chasing I have finally got a (pencilled in) date for Finlays surgery. It's not until August 20th, which is much later than the original 'it will be before christmas', but at least I can relax for a few more weeks and know that we won't miss our holiday and best of all we will definately be able to make the get together!

Fran
maxleonardwilby <ace2912@...

Hi Donna,
I was wondering why I hadn't seen any messages from you lately. I had
the same for a couple of weeks, my mails from this group first came all
individually, then stopped without me having made any changes. Never
mind, it all seems to be working fine now.
It would be great if you could make it to the meeting. I'd like to meet
you & Hannah. I'm coming with Max & I'll stay overnight nearby because
its much more relaxed not to have to rush off home to Devon afterwards.
As for catering, I'll bring sandwiches & a flask of coffee - how about
calling Pizza-Express or a delivery service if someone wants some
lunch? All we'd need is a mobile phone & some menus - and there's no
washing up!
regards, Antonia

Hi Fran
I guess that's a double edged sword hey? I will be around to pop in
if you need anything and I know Trish will too.
Look forward to seeing you again on the 4th. Call me if I can do
anything.
Lynn X

Interventies bij ongecompliceerde nekklachten
bron: Kenniscentrum Arbeid en Klachten Bewegingsapparaat
Inleiding
Ongeveer tweederde van de mensen krijgt ooit in zijn leven nekklachten,
meestal op middelbare leeftijd. In de meeste gevallen gaan de nekklachten
binnen enkele dagen of weken spontaan over, maar de klachten kunnen
recidiveren. Bij ongeveer tien procent van de mensen worden de klachten
chronisch, bij vijf procent treden zelfs ernstige functionele beperkingen
op.
Oorzaken worden meestal gezocht in een slechte houding, angst en depressie,
nekbelasting en arbeid- of sportgerelateerde blessures. Bij chronische
klachten spelen mechanische en degeneratieve factoren een duidelijkere rol.
Ongecompliceerde nekklachten worden op uiteenlopende manieren behandeld. In
deze samenvatting is het beschikbaar wetenschappelijk bewijs voor de
effectiviteit van de diverse interventies samengebracht.
Definitie van ongecompliceerde nekklachten
Nekklachten kunnen worden onderverdeeld in ongecompliceerde klachten,
whiplash en uitstralende pijn (radiculopathie). Ongecompliceerde nekklachten
zijn klachten als pijn, spierspanning of stijfheid in de nek, waarbij geen
sprake is van ernstige neurologische stoornissen of uitstralende pijn.
Evenals bij rugklachten wordt bij nekklachten onderscheid gemaakt tussen
acute klachten (klachtenepisode van 6 weken of korter), subacute klachten
(klachtenepisode 6 tot 12 weken) en chronische klachten (klachtenepisode
langer dan 12 weken). Aangezien dit onderscheid in veel wetenschappelijke
studies niet helder wordt gemaakt, is het hier gepresenteerde bewijs niet
standaard onderverdeeld in acuut, subacuut of chronisch. Daar waar mogelijk
wordt aangegeven of het gaat om acute of chronische klachten.
Wetenschappelijk bewijs
De hier gepresenteerde samenvatting van het wetenschappelijk bewijs is
gebaseerd op 'Clinical Evidence' van het British Medical Journal (BMJ)
(2003). Cllinical Evidence evalueert het wetenschappelijk bewijs voor de
effectiviteit van veelvoorkomende klinische interventies. Doordat het
regelmatig wordt bijgewerkt, levert 'Clinical Evidence' up to date
informatie over de stand van de wetenschap. Het bewijs is gebaseerd op goede
systematische reviews (van gerandomiseerde onderzoeken), eventueel aangevuld
met grote, goed opgezette gerandomiseerde onderzoeken die verschenen zijn na
publicatie van de systematische reviews. Als systematische reviews
ontbreken, is gekeken naar de beschikbare gerandomiseerde onderzoeken.
Effectiviteit van interventies
Fysische behandelingen
Electrotherapie met pulserende electromagnetische velden en oefentherapie
zijn waarschijnlijk effectief bij ongecompliceerde nekklachten. De
effectiviteit van acupunctuur is onduidelijk, het wetenschappelijk bewijs is
tegenstrijdig. Ook voor tractie geldt dat de effectiviteit onduidelijk is,
er zijn hierover slechts enkele kleine studies beschikbaar die geen heldere
conclusies mogelijk maken. Lasertherapie is waarschijnlijk niet effectief.
Over de effectiviteit van overige fysische behandelmethoden als massage,
thermotherapie, EMG biofeedback, TENS, ultrageluidgolven of 'spray &
stretch' zijn geen uitspraken te doen. Er zijn geen gerandomiseerde studies
gevonden die dit hebben onderzocht.
Manuele therapie
Manuele therapie (manipulatie en mobilisatie) is waarschijnlijk effectief om
op korte termijn pijn bij acute ongecompliceerde nekklachten te verminderen.
Het is onduidelijk of manuele therapie bij chronische klachten effectief is,
het wetenschappelijk bewijs is tegenstrijdig.
Multimodale cognitieve gedragstherapie
Er zijn aanwijzingen dat multimodale cognitieve gedragstherapie niet
effectief is bij chronische ongecompliceerde nekklachten.
Nekscholing en voorlichting
Er zijn aanwijzingen dat nekscholing en voorlichting van patiënten niet
effectief zijn bij ongecompliceerde nekklachten.
Kragen en speciale kussens
Er zijn aanwijzingen dat het gebruik van waterkussens bij ongecompliceerde
nekklachten effectief is voor verbetering van de slaapkwaliteit en reductie
van pijn in de ochtend. De effectiviteit van zachte kragen is onbekend, er
zijn geen gerandomiseerde studies gevonden die dit hebben onderzocht.
Medicatie
Het is niet duidelijk of spierverslappers/benzodiazepines effectief zijn,
het wetenschappelijk bewijs is tegenstrijdig. De effectiviteit van
medicaties als pijnstillers, NSAIDs en antidepressiva bij ongecompliceerde
nekklachten is onbekend, er zijn geen gerandomiseerde studies gevonden die
dit hebben onderzocht.
Conclusies
Er is een grote verscheidenheid aan interventies voor de behandeling van
ongecompliceerde nekklachten. De effectiviteit van de meeste interventies is
echter niet duidelijk, er zijn te weinig kwalitatief goede gerandomiseerde
onderzoeken uitgevoerd. Alleen electrotherapie met pulserende
electromagnetische velden, oefentherapie en manuele therapie zijn
waarschijnlijk effectief als behandeling bij acute nekklachten.
Aanbevelingen voor de praktijk
Op basis van het beschikbare wetenschappelijk bewijs kunnen zowel
electrotherapie als oefentherapie en manuele therapie worden aanbevolen. Uit
recent onderzoek blijkt dat manuele therapie het meest kosten-effectief is
(Korthals de Bos et al., 2003). Doordat deze therapie snel effectief is,
zijn vooral de indirecte kosten zoals werkverzuim geringer dan bij
oefentherapie door fysiotherapeuten of behandeling door de huisarts
(voorlichting, evt. pijnstillers en eenvoudige oefeningen).
Referenties
- BMJ Publishing Group. Clinical Evidence (9e ed). London UK: BMJ Publishing
Group, 2003.
- Korthals-de Bos IB, Hoving JL, Van Tulder MW et al, Cost effectiveness of
physiotherapy, manual therapy, and general practitioner care for neck pain:
economic evaluation alongside a randomised controlled trial. BMJ. 2003 Apr
26;326(7395):911. [Pubmed]
_ _ _ _ _ _ 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 Trish
I am reliably informed that the venue has just been refurbished and has
a new disabled toilet.

Bringing our own "picnics" or ordering takeaway both sound good to me!
I can bring a list of local pizza delivery places
Trish

Welcome Rachael
do you feel like joining us to meet up in Liverpool on the 4th August?
Lynn

Hi Georgina

That just sounds like any other kid when they are excited. Come to Liverpool and see my 5 year old son jumping about (no SWS!!)

My partner, Mark, jiggles his legs constantly - to the point my Mum, when visiting, says `For god's sake Mark, you are making the house shake'. He was very pleased with himself when he read an article in Time Magazine which said a study had proved that people who jiggle are more likely to be thin. He can eat what he likes and still stays as skinny as a rake. He also claims the reason I have bad circulation is that I don't jiggle enough. So .... It would seem, jumping, kicking and waving are to be encouraged for good circulation, weight loss and general good temperament!

Everything that kids do is a phase - it has to drive you completely crazy before it stops. Just when you think you can't stand it any longer, they stop and move onto a new habit which drives you demented to the point when you can't stand it any longer .......... Etc

Donna

Hi Georgina
without seeing Nathan or knowing a lot about him, it does sound as
though he is just excitable. I wouldn't lose sleep over it, I know
someone (not SWS) who used to bit his hand when he was excited!
Lynn

Good to see you here Rachael, I'm glad you joined. When you have time I'm sure everyone would be interested to know more about Miles.

Fran in Shropshire (mum to Finlay, 5, SWS, PWS)
gkynman <georgina.kynman@...

Hi Rachael
I see you've just joined the group - welcome. Nice to see someone who
lives in my area - we live near Doncaster but my husband works in
Sheffield.
I have a 3 year called Nathan with PWS, SWS.
Kind regards
Georgina

Hi everyone
I will probably sound bonkers asking this (as confirmed by my husband)
but have any of you ever come across the following in any of your kids
(SW or not)?
When Nathan gets excited he wags his arms & legs about, so if he;s
standing he'll jump from one foot to another & if he;s sat he'll kick
his legs up & down. It's a subconscious thing I think becuase when I
tell him to stop he does. I don't want to give him a complex about it
but then I don;t wnat him doing it when he's older as it'll look at
bit strange!
Hubby says I need to get a grip & at the end of the day he is just an
excitable 3 year old. Will he grow out of it - am I worrying about
nothing?
Thanks
Georigna, Mum to Nathan, 3

Hi Rachael
I see you've just joined the group - welcome. Nice to see someone who
lives in my area - we live near Doncaster but my husband works in
Sheffield.
I have a 3 year called Nathan with PWS, SWS.
Kind regards
Georgina

Hoi,
ik ben Esther, 38 jaar, mijn zoon was 10 toen het auto ongeluk gebeurde, de
jongste liep gelukkig geen letsel op. Inmiddels is hij 13 en een hoop ellende
verder. Ook heel veel psychische problemen gehad dus, inmiddels is hij bij
een hypnotherapeut geweest, om het ongeluk her te beleven, dit heeft hem heel
erg geholpen.
Wil je nog met me praten, kan via msn, Soselisa@...
Groetjes
Esther

Hi Lynn,
We would love to come on 4 August. There will be 4 of us 2 adults and
2 children.
Look forward to seeing you all then
Katie Ridley
(ps : I tried sending this message a few days ago but I got a response
saying it had not been delivered so my apologies if this response has
been duplicated!)

Hi all,
here are the hotel links:
http://www.innkeeperslodge.co.uk/lodgedetail.asp?lid=58
This is for the Innkeepers Lodge which is five minutes away from me.
It is off a the main ring road (not far from Alder Hey). You can
often book a room for £29. ish if you book four weeks in advance.
Breakfast is included in the price here too.
http://www.premiertravelinn.com/pti/hotelInformation.do?hotelId=23829
This one is on the same road as the last one but don't seem to do
special deals.
http://www.premiertravelinn.com/pti/hotelInformation.do?hotelId=24199
This one is just off the M62 and the same as the last one.
Travelodge have a few in Liverpool and do deals if you book in
advance. Here are some links to ones which are not too far away:
http://www.travelodge.co.uk/find_a_hotel/hotel/hotel_id/149/LiverpoolC
entral
This is in the city centre and you would have to pay for parking
http://www.travelodge.co.uk/find_a_hotel/hotel/hotel_id/248/LiverpoolD
ocks
This one is by the Albert Dock and does have a car park.
There are many others down by the Albert Dock but they don't do
deals. Hope you find a room ok.
Lynn

I can make any of those dates, we don't have a holiday planned yet,
we are probably just going to do a few days here and there! The only
date I can't do is the end of August as Alex has a competition in
Gateshead.
It's looking like the 11th August is the most popular date. If
that's ok with you all I will book it.
Lynn

July 21st Aug 4th Aug 11th are all fine and in no particular order of
preference.
Lynn he likes music and DVD's
Shelley x

Hi All
I have some dates here which are possible for the get together and give
you time to try and get a deal on a hotel if you need one.
Let me knoe a first and second choice and I will choose the most
popular. If anyone can't come we can always do it again in a few
months.
July 21st or 28th. August 4th, 11th, or 18th.
I will research some hotels and post the links on here.
Lynn

Hi Shelley
is there anything which Luke likes that would keep him occupied? Maybe
I can arrang something for him.
Lynn

Hi Lynn
That made me laugh. I would like to come but he is so
unpredictable. You think everything will be fine then BANG and off
he goes. I think we have just got more and more reluctant to even
try going anywhere. I would love to see you all though, so maybe
with the hard hats we could make it. He does like little children
though so that is a good thing. I would just hate him to kick off
and leave people thinking, 'oh God is that what we have to look
forward too'.
Thanks for organising it though and this site. Let us know details
as and when
Shelley xxx

Shelley don't you even think about staying away from meeting up because
of Luke's behaviour! If there is one place you can be and not worry,
it is with us. Don't forget, Alex's behaviour was awful before his op.
so I can emphathise. Anyway, Colin can borrow lots of site helmets!
Take care
Lynn

Hi fran
I've just seen Finn's new picture on the site - he is soooo cute!
Hope you are all well - and that you still have fingernails left from
waiting for your dates... how awefull that its getting dragged out so
much for you guys.
when we meet you can tell me how to post pictures - I really need to
sort my act out with this technology thing!!! Getting a new digi camera
for my b-day in july (hopefully) so may learn then how to do it!!!!
speak soon take care xx

Hoorah!

Thats good news, whereabouts in Liverpool? Us country folk aren't used to the traffic you know!

All our weekends are free at the moment - Sam likes to go off and enter biking events but if I pencil something in first he will always drive me. The only time we are away is Mon-Fri July 23rd-27th. Having said that our lives revolve around the all important date from Alder Hey - but I'm beginning to doubt if it will ever happen. If weekdays turn out to be best for people then there are always ways round things, if me and the children stayed over Sam could just drop us off and pick us up next day. If there is a way to be there I will find it!

What does everyone else think - you've all been very quiet lately.

Fran (mum to Finlay,5, SWS, PWS, drop seizures coming back)
Lynn Buchanan <lb_uk_2k@...

Hi All
I have finally managed to locate a room for us to meet up! It is in
Liverpool (I did try other places) so now all we need to do is decide
on a date. I was thinking the summer holidays would be best, although
I realise people may be away on holiday. There are Travelodges close
by for people staying over.
Can I have your opinions about when you can meet up and we will take it
from there.
Thanks
Lynn

hoi christa
Zal proberen antwoordt te geven zo goed als ik kan .
doet me ook goed om mijn stukje hier kwijt te kunnen bij mensen die zelf
weten hoe het voeld om wl te hebben .
het zwaarste vind ik dat als ik bijv vraag waarde oorzaak is dat hij bijv
zijn gevoel kwijt is dat mijn man nergens antwoord op heeft .Bijv als hij
zou zeggen je begrijp het niet of je luisterd niet dan weet ik dit .Hij weet
het zelf niet .Hij zegt we hebben relatie problemen ik zeg jij heb emotioneel
een probleem en dit uit zich naar mij toe .Als je relatie problemen heb kan
ik bijv zeggen je laat me niet in de waarde of je neemt me niet serieus .Wat
ik wel merk is dat je hier door wel problemen krijgt . Wat me opvalt is dat
mijn man een hele verre grens had er kon altijd veel ook voor de kinderen nu
zit hij heel gauw aan zijn grens en ik vind ook dat hij veel ste veel doet
en merk ook dat hij veel vlucht gedrag heeft en daar is hij zich nu ook zelf
bewust van .
Mijn man pakt me nu nooit meer vast of geeft me spontaan een kus en
dit komt over alsof hij houdt niet meer van me want als die wel van
me zou houden dan heeft hij er ook behoefte aan .Maar zo simpel is het
niet met een wl want hij heeft probleem op het emotionele vlak waar
hij zelf nog geen antwoord op heeft .Hij vergeet bijv me ook een kus
te geven .Ik moet er nu om vragen en als hij me een kus geeft is dat
niet meer zo als voor het ongeluk .Ik merk bijv dat ik er meer mee
bezig ben als hij dus dat zegt ookal iets want wat wil hij niet zien
/voelen .Ik vind het heel moeilijk door zijn afstandelijke houding
echt te zien wat er is verstandelijk kan ik dit wel maar gevoelsmatig
niet want hij zoekt geen genegenheid of contact en je kan wel zonder
sex maar niet zonder liefde aanraking daar heb ik de grootste moeite
mee want ik ken hem zo niet .merk ook dat ik iets zoek wat er nu niet is .
ik lees ook graag reakties van partner ook om te weten of mijn houding/
gedrag normaal is ook omdat ik graag wil weten hoe ik hier mee om moet
gaan .Wat mag ik verwachten wat niet
ik hoop dat ik via jullie mail hier ook meer duidelijkhied in vind en het
meeste balangrijke is de relatie .
afstandelijk naar mij dan bedoel ik lief zijn naar elkaar en dan heb ik het
niet over sex .Maar mij het gevoel geven dat hij toch om me geeft en dit is
dus weg en hij is bezig hier zicht op te krijgen wat hier de oorzaak van
is .Kan het zo zijn dat het door de wl gewoon weg is en nooit terug komt of
is het meer een verwerking van de whiplash en het emotionele vlak .
ik had ervoor een postantale depressie die niet erkend is ook niet door
mezelf .Daar kon mijn man goed op reageren en sinds we er achter zijn
hoe het zzit met zijn gevoel emotie kan hij dat van mij er niet meer
bij hebben de rek is eruit .Mijn problemen zijn wel verergerd doordat
hij niets voeld ervoor had ik geen problemen met dat hij bijv veel
vergeet niets in huis doet mijn probleem is zijn emotionele kant .
kijk als je samen kan huilen voeld niet alleen heb nu meer het gevoel dat ik
nu het alleen moet doen omdat mijn man het niet meer strekt en dat vind ik
dus heel moeilijk .Dat bedoel ik ook met niet sterk kijk als jij een whiplash
heb en je man is overspannen dan kan je beide niet goed op elkaar steunen en
ik heb het gevoel dat dit bij ons is .
In het begin deed ik niets anders ik begin er iets betr mee om tegaan
hoort geen contact zoeken op wat van vlakt dan ook bi j de whiplwash
of zijn er ook veel whiplash patienten die graag genegenheid en warmte
zoeken of zit de man toch anders in elkaar en ookreageerd een wl
vrouw anders dan een whiplwash man omdat wij vrouwen al gemakkelijker
praten over gevoel ed .Of heeft dit het toch te maken in welk stadia
vanje proces je zit ??
dat heeft hij zeker ik denk zelf dat hij me altijd wilde sparen en dit
tenkoste van zichzelf is gegaan en ik denk dat daarom zijn gevoel naar
mij weg is .Hij heeft zichzelf teveel weggecijfers maar als ik hier
over praaat is hem dat niet duidelijk en ik ben iemand die graag hort
van ja dat klopt dan weet ik wat de oorzaak is .
ik heb het idee dat hem dat niet teveel is hij voeld er niets bij of bedoel
jhij dit ook ??Ken je dat ook dat je er geen gevoel bij had ???
hij kwam uit de wao ivm zijn rug was weer gaan werken maar nog niet volleig
hij zou hogerop komen en meer uren krijgen en toen kreeg hij dat ongeluk .Ik
heb het gevoel dat hij teeveel is door gegaan zo van niet zeuren en
door gaan het lijkt nu wel of het verergerd is en nu heel erg
zichtbaar is .
dankje ik hoop dat er mannen en vrouwen zijn die mij ook hun verhaal willen
doen als ze weten hoe hun partner hier mee om gaan vooal op de emotionele en
relatie vlak
je mag alles vragen ik ben 45 jr en mijn man 45 jr we hebben twee meiden van
18 en 14 jr groetjes gerda en bedankt ik heb er veel aan ook om te lezen wat
wiphlash met je doet .OOk tips en wat ik wel of niet moet doen zijn welkom
_ _ _ _ _ _ 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 everyone
Nathan has a right sided weakness & balance issues and has therefore
taken awhile before he could stand on his own two feet so to speak!
Whilst he can now walk & run he still struggles with climbing, both
onto furniture & up stairs.
Just after your thoughts please if this is something youve experienced.
Thanks
Goergina, Mum to Nathan 3

Hi Georgina
Alex was slow to walk and took his time to do most things. He
usually needed an incentive to do things, with him it was TV. Does
Nathan have physiotherapy?
Lynn

Hi All
Reading your posts I feel we have been lucky in that I notices
Danny's blind spot when he was months old as he couldnt see silent
toys coming in from the lft until they were in the centre of his
vision - in front of his nose. And I said this all along. Then when
he started at private nursery I told them too as it is very obvious
and also Danny would tilt his head over to look at things to the
left, and also some of the vision below him even centrally is missing
and then when Dan was formally assessed for support in preshool it wa
staken into account by the vision support specialist and it is in his
statement for primary school too and he has one-to-one support for
all his condition including hemianopia. He is always seated
appropriately too, and things that are stimulating are put to the
left and things they want him to do are on his right. To encourage
him to look to his left as with the weakness on that side he would
forget his left side existed if he didn't see it too, and then to
gain attention put it in his best spot - the right to give him a
fightinh chance of seeing it. the physio always wanted us to put
things on his left and try to encourage his left hand so a bit
contradictory but we worked around all of this. also Danny's was pre-
op so I think in his case it is the SWS not the hemiop tat caused
this. Also for fran as I know just what you are going through right
now - do you have a date for Finns op? And just a bit of
encouragement - Dannys walked in week one after the op - beacuse he
didn't like doing the physio on the floor and wanted to get back into
his bed, so I just handled him in the normal way expecting that I
would have to carry him but he stood up and didn;t even lean on me
any more than normal and wlaked to the bed to get away from the
physio woman!!!!! Ha Ha! Surprising whst he was capable of when he
was trying to escape the thing he hates - physio!! I was over the
moon as you can imagine and when I told his Daddy when he came back
to the hozzy he cried in relief as we were also concerned that this
is a risk with the surgery. just thought I'd tell you to try and give
you some support and encouragement xxxx. I would also recomend re:
hemaniopia that eceryone get their kids checked out forit as
sometimes this condition is that complex that things can be missed!!
ASnd this is a biggy in every way as we can see from lynn's and
Alex's story. We just now have difficulty getting exactlt the extent
of the hemaniopia as Danny doesn;t do anyone in a nurses uniform
anymore so it is difficult to get an eye test from him and also he
cant read yet - has only just learnt to speak too. I could diagnose
it at home with the specialist but not in the hozzy unfortunatly! Yes
I agree the RNIB is very good, we were offered support from them with
Dan from an early age - but luckily so far we have only needed his
medical team and teachers - who are fab i have to say - so far!!
Anyway best regards to you all. hope this hleps.
Love Ingrid xxx

Hi Karen
looks like everybody will be learning from you too! How is Christina's
vision?
Lynn X