I was going to ring you this afternoon but I know how hard it is with
children around. Tim was out Friday and Luke decided not to go to bed
hence didn't ring then and last night we had take away and Luke stayed
up, which was really nice.
I will ring you tomorrow at 8pm, that is a date, is it ok with you?
After this build up, not even sure I can remember why I was ringing,
LOL. Yes I can it was about schools.
love Shelley xx
11 is fine with me luv karen
Hi Emma
sorry to hear you are having such a bad time. If it were me I would
be on the phone constantly until I got some satisfaction. Keep pushing
until you are happy.
My son Alex had his hemi 17 years ago in Liverpool. When the surgeon
suggested the op and we agreed I said I couldn't cope with waiting too
long...the op was done two weeks later and it felt like a lifetime to
us!
Take care and keep pushing.
Lynn X
11am is fine by me, I am looking forward to it!
hi Emma
Dan had his Op at alderHey, liverpool not GOS - thought I'd mention that
sorry Ingrid x
hi Emma - do what you can to make it happen... even if you have to
demand to speak to someone there on the phone - They didnt even bother
with telemtry with Dan in the end even though they had planned to
becuase he was having so many fits that they didnt really need it
videoing or an eeg to convince anyone they were fits - they just got on
with the op.... best of Luck and prayers for Alex
Ingrid x
it the hardest time of all- was in exactly same position all those
years ago- i can remember standing beside Christina when she was
fitting for over 4 hrs - it was like a dream and i was looking on.
believe it or not the month before surgery she was having a good
phase and at this time we queried decision that was made for
surgery.
to give you hope look at our latest photo of christina on site- she
was her brother and fiancee's bridesmaid.-may 3rd 2008. all those
years ago i good never have imagined this. keep at the doctors- i
did.
she still has seizures, but gary and i are sure without the surgery
who knows what would have happened. keep strong all our children
have a inner strength.
luv karen
Thanks Donna and Karen - we seem stuck between a rock and a hard place. On three meds, we have some days of near continual activity and a few major seizures where, like Hannah, Alex stops breathing (fortunately diazepam has stopped these seizures just as the paramedics have arrived, so far), but there is some level of development. When a fourth medicine is added, the seizures are better controlled but his development totally stops. I've been told that the report from the SW clinic is in the post so as soon as that is with me, I am going to call and ask when his telemetry will be. If no success I will follow your example, Donna, and write to Dr Aylett. I think our meeting with our local team scared me silly o n Thursday because Alex's local neurologist went through the statistics of SUDEP - with his last big seizure only a week ago, I've just had awful thoughts of losing him simply because surgery hasn't happened quickly enough.
Anyway, that's enough from me - just having a few bad weeks. Am hoping he improves again soon - he does seem to go through phases.
Emma
Hi Emma
Sounds like you are having a bad phase. Hope it passes soon. Exactly what you said about the awful thoughts of losing them before surgery happened was exactly what I was going through nearly 3 years ago now. If you want to see it, I still have the letter I wrote. Maybe that is a horrible upsetting offer, I don't know.
Hannah's development has been amazing since her surgery - there are obviously drawbacks in the lack of use of her right hand and the visual impairment. But I would do it all again any day to get our wee girl back the way we have.
Donna
Archibald Photography Ltd
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although chrisitna is older than alex i am replying because we have
always had to accept christina needs a coctail of meds, two has been
the minimum, at present she is on 4- postitively she copes with
level although may is more tired than usual- we say that as long as
they give her control we can cope with it is obviously what she
needs- she does still have seizures but they are mainly managed at
home which is great.
she is amazing as to how she copes with such a cocktail according to
the neurologist. but if seizures are 'controlled' she is able to
cope and develop more.
we accepted a long time ago she probably wouldn't get seizure free
but its quality of life that counts. she did have surgery - two
parts- age 6 and 16, this was necessary as seizures weren't being
controlled, they were very long seizures.
now she does have an ODD prolonged seizure which have to dealt with
at hospital,but on average she doesn't let them deter her.
i could write an essay as how to survive each obstable and talk
positively about keep trying!!!!!!!!
luv karen
Hi all,
Max has got an appointment at GOS for his next laser treatment on 28th
October. Will anyone else be there at that time?
Antonia
Thanks for responses about medicines...we do seem to be losing the battle in that respect as even with all 3 on board we are having nearly continual activity and the occasional ambulance ride to hospital. Apparently we are on the waiting list for telemetry, and probably surgery, but I suspect I will be spending the next few weeks chasing them up
Emma x
Hi Shelley,
Don't worry at all, I knew you were at a meeting so didn't think you'd be having fun!
My home number is 01204 698358. The children are usually in bed around 8pm but if this isn't the right time for you just ring when it's convenient for you and if it gets difficult (i.e. my children not leaving me alone when I'm on the phone) we can abandon and try again.
Look forward to talking to you.
Christine x
Hi Ingrid
I totally agree with what you said, we need to give ourselves
permission to feel miserable sometimes. It does you the world of
good! Another thing I learnt with Alex was patience. I wanted him
to do everything as quickly as possible - walk, talk, read, go to the
toilet lol. It all came eventually and if I had been more relaxed it
would have still happened at the same speed anyway.
What time do you want to meet next week?
Lynn X
Hi Christine
Sorry I forgot about our head injury support group, hope you didn't
expect us to be out enjoying ourselves?
Tim is out tomorrow night so if Luke isn't asleep it may be hard to
talk. Can I ring you over the weekend? Let me have your number and a
good time to ring.
Shelley x
Emma,
Thanks for your helpful reply. Our appointment is 1.30pm and our last direct train home is 4.10pm so I will have to put some thought into how to manage it. It is on July 8th so we will miss each other this time.
About medecines, Finn is currently on 2 (Tegretol and Vigabatrin) but is still having breakthroughs though nothing major. For the last few weeks it has always been about the same time (early morning 6ish) and just his foot! We have tried a few over the years, I can't remember them all at the moment,,,we have tried Topamax and Keppra. Finn used to have what we called the Keppra rage when he was on that and needless to say he wasn't on it long!
Fran
--- On Thu, 19/6/08, emmabanimals <emma@...
From: emmabanimals <emma@...
Subject: [sturge-weber] SW Clinic at GOS
Hi Fran
In my experience the SW clinic takes 2-3 hours. Or maybe that was
just because Alex wasn't very co-operative on either occasion (he
helpfully had a seizure cluster last time we were there). It also
takes MONTHS for the typed report to get sent to you (we are still
waiting for ours from 8th April), although you get a handwritten one
at the time. Anyone else find this, or is it just us? ;o)
If by any chance you are there on 16th or 23rd July, let me know cos
Alex has opthamology on 16th and his first laser treatment on 23rd,
and it would be great to try and meet up.
And Donna, I nearly did exactly the same thing in a meeting this
afternoon, just because there was so much information being thrown at
me. Not sure anyone could honestly say they haven't been there.
Emma
PS On average how many anti-convulsants are all our children on? We
are losing control with Alex currently on Topamax, Keppra and Epilim -
he'll probably be on Clobazam in the next couple of weeks. Is this
about average? We used to have fantastic control just with Topamax
and Epilim
x
sorry to hear about you being upset, but don't ever feel that your
unstable- i also say how hard it is to talk about your child progress
as positive sometimes when all you want is for things to be 'normal'.
it's so frustrating as a parent to sit with professionals, i've many
times broken down and then apologised to them for being upset.
There isn't an easy answer but i know from my own expereience it very
often moving on to the next stage when i get upset/frustrated. it's
hard when you see others moving on, i think it's okay to say it's not
fair sometimes, it doesn't mean we woul swop our children they are so
loved but maybe some of the things the condition throws at us.
do know how you feel- tske care and let us know how your getting on.
luv karenx
Hi Donna
we spend so much time being brave and coping, it is no wonder we fall
apart now and again. Think of it as a hazard of the job!
Lynn XX
Hi Donna
Don't worry I have done a simliar thing (several times) and no-one can tell what you are saying through the sobs!
I am sure the professionals understand and have experienced this many times before. They must understand that it is very emotional talking all about your child and discussing their intimate details and sometimes it reveals feelings you weren't aware of. It's probably done you good releasing these emotions although I'm sure you weren't thankful at the time.
Hope you are ok now. I have already checked whether it's a full moon as my (almost) teenager son has been VERY moody tonight and I am suffering from PMT so it's not a good combination!
Take care
Christine
Hello everyone
I had a very embarrassing morning at a Educational Psychologist meeting with about 8 different professional involved with Hannah! The meeting was going OK talking about what she can and cannot do and her transition from special needs nursery into mainstream after the summer. Then they asked if there was anything else worrying me, I opened my mouth to say I was worried about us deferring Hannah and her best (and very, very close friend going to school) and I burst out crying. I was as surprised as them!! Then everything else I tried to say made me cry more and the rest of the meeting was a disaster!
I am sure they now have me labelled as slightly off my head
I don't know what was going on - is it a full moon tonight???
Donna
have been to walton today with christina- professor is retiring so we
had a hand over to Dr Nicholson who will now be her doctor.
got positive feeling- may be more approachable- fingers x. Sometimes a
change is for the better and he is young so may have fresh ideas.
luv karen
yes will be ok for 27th
luv karenx
Hi Karen
can you make the 27th?
Lynn
27th June fine for me!!
Trish x
Hi lynn
I can make fro 27th June....yipeeeee.....can anyone else? I can be
there anytime after school run x
Hey shelly.
Sorry i havent been on here for a while, i have been having a hard
time i have just found out my gran has stomach cancer so havent had
time to get on here plus ashton has been full of cold since he came
home from the hospital.
He is being put under anaesthetic next wednesday to check his eyes
for gluacoma which iam happy about because i want it to get sorted if
he does have it. His eye is still quite big compared to the other
one. The ophthalmic consultant ashton sees was a idot he said to me
its very rare child with sws to get gluacoma, i was like no its not
the stats say it appears in 80% of children with his condition and he
was like o listen its very rare i doubt ashton will have it. He said
it could just be a malfunction or summat that is making his eye
larger.
I still havent seen my consultant at the hospital about ashton eeg
results, i rang them up yesturday and she said she would get bk to me
its now the secound day and she hasnt got back to me i will have to
ring tomorrow and find out whats going on. But the main thing is
ashton hasnt had another seizure and he is back to his old self.
The other reason i couldnt get back on was because i forgot my
password :/ oopppss. How is everyone?? Sorry i could get on to say
happy birthday claire hope she had a good birthday trish??
I see you ahve all been chatting away about schools i cant take part
in that convo as my son is only 6 months. ahha
Take care laura and ashton xxx
Hi Shelley
Thanks, I'm just going playing badminton (for the first time in years!) with my oldest son and won't be back til late. Will ring you Thurs or Fri eve after 8 (when the children are in bed) if that's ok. If not please let me know.
Speak to you soon,
Christine x
Anyone know, am worried about her as no postings for ages. I know she has some
of your
phone numbers so wondered if you had heard from her?
Shelley
I am sorely tempted but work Weds - Fri and there wouldn't be quite enough shopping time as I'd have to get back to pick the children up from school.
Have a great time!
Christine
Yes the small matter of about 90 miles, otherwise would be there like
a shot
Shelley
Christine
is there any reason you can't come to Liverpool 1 with us? And anyopne
else for that matter?
Lynn
Thanks Ingrid,
I do feel better getting it all off my chest but when I re read my posts think look at the length of them! Enjoy the shopping at Liverpool One I'm very jealous!!
Christine x
Hi Shelley
Thanks, I know what you mean. I feel I could write a novel on what has and hasn't happened at school!
I am happy to ring you, when is the best time for you? I'm at work during the day Weds-Fri and am going out today as all this talk of a trip to Liverpool One has made me very jealous (ha ha) so am going into Manchester with my sister.
Speak to you soon,
Christine x
Hi Christine
I have a long long tale to tell re challenging behaviour and school.
I don't know where to start, but Luke has always had special
schooling. I am happy to discuss it and if you want to ring me or me
to ring you I am happy to do so.
My phone no is 01604 406851 please feel free. I have nothing to hide,
but I have tried to reply twice and it just gets so longwinded, I lose
the will to live!!!
Shelley x
I can do any day- if necessary i will just bring christina - i do have appointment on tuesday 24th june.
luv karenx
Hi Ingrid
Thanks for sharing your experiences. Glad Dan is behaving better at school than at home although I know that's not much consolation for you! Jacob is the other way round, although we do have problems with him being stubborn and awkward at home he is worse at school.
I also met with the head prior to Jacob starting school and alarm bells should have rung then as he wasn't particularly welcoming, it was as if Jacob would be an inconvenience. This negativity was also commented upon by Jacob's nursery teachers who attended the meeting with me. I chose the school as my elder son went there and Eve also now attends reception. It's a good school with I suppose fairly small numbers of special needs children (and other parents also have concerns). At the time I didn't consider anywhere else as he was meeting all his milestones and I naively though if he needed help at school he could get it, how wrong I was!
He received his statement for 20 hours in November 2007 (at the beginning of Yr2) after I did a parental request for a statutory assessment of special needs as school didn't seem to be getting anywhere and it does state that his support worker should be experienced in complex difficulties. Although she is a very nice lady I don't think she has the experience needed to deal with him either behaviourally or educationally. He is starting to progress now but very slowly. I feel that if we request a review and new support is recruited it is still the school's attitude that will not change and more time will have gone by. I have shared loads of information and had hundreds of meetings yet they still do not seem to understand.
We had a meeting last week with the Dr from CAMHS (childrens mental health) and school as he says Jacobs 'not severe' behaviour is all related to his difficulties and his environment and support needs to be right. It was a very difficult meeting and his teacher took great exception to the report that had been produced. I suppose this has really been the catalyst for us considering special school more quickly than we had planned. We have also thought about other mainstream schools but I think they will be in a similar position in that there are 30 children in the class, although their attitude may be more understanding. I also think it may be more difficult for Jacob to fit in and make friends as friendships will have already been established and naturally he will get a lot of curiosity about his birthmarks as they are very extensive.
We have decided that we are going to look round the special school, I'm just plucking up courage to ring! By co-incidence yesterday our neighbours had friends round one of whom worked at the special school and she was asking me about Jacob. She said they would absolutely love him there and that's what I want. He has loads of brilliant qualities which are just not recognised at his current school.
Sorry this is so long and waffly I feel better now I have had chance to listen to other experiences (and get things off my chest!) as it's making me consider everything carefully. I must admit I did feel a bit upset whn I took him to school this morning (the benefits of not working Mons and Tues) and he was smiling from ear to ear and chatting away to his friends. We have briefly mentioned changing schools to him to judge his reaction and he was more bothered about what the uniform would be like!!
Hope you are all well
Christine x
Hi Karen
Thanks, it's useful to hear your experiences. The stories are similar, I am worried that I haven't given 'the statement' enough time to make a difference. We did say we would wait 12-18 months (i.e. next year) before we made a decision but I am concerned that time is quickly passing by and Jacob will be moving into Juniors in September and so much more will be expected from him that I think he will just not be able to achieve. The head of his current school is also now saying we have to consider whether he is in the right place.
I'm sure once we have had a look round at the special school and talked to the head we will be able to judge whether it will be right.
How's Christina doing now?
Thanks again
Christine x
Hi Another point of view....
Dan was advised by the LEA to go to special school - and I declined
this and put him in mainstream with a one-2-one - but he had been
statemented in preparation for starting primary - and I had visited
the primary school a year before to discuss his needs personally with
the headmistress, who said she didnt see a problem - he was having
regular seizures all day at this point so the management of those was
my primary concern... so far we have been happy with his placement,
although more recently I have major concerns about Dannys
behaviour,and have asked his paed that he gets tested for autism, the
school however don't have as many problems as me with his behaviour
as he behaves better in school becuase he responds well in routine -
its just when he doesnt know what is happening next (at the
weekends/school holidays) that his behaviour is very challenging... I
reckon i n comparison we have been very lucky as Dan wa sstatemented
prior to starting school so the school were aware of various
medical/physical issues and had to meet his needs before he started -
and now that is allready in place any developments/changes to his
needs are met within that prior agreement...Having said that the
local mainstream school which he attends is the one on the wirral
which does cater for children with extra needs who go to mainstream
school so they do have lots of experience and have done this before.
Maybe once Jacob is statemented the school will recognise his needs
and they will have to say officially whether or not his needs can be
met there... I have to say that t sounds like they dont have much
experience with children like Jacob previously and I would be majorly
concerned like you are that his confidence/social skills will be
affected by the negativity he is facing at school if they are not
tackled. the head doesnt sound very supportive saying apart from his
SWS he is a difficult child and badly behaved.....I would suggest you
dont rulke out other mainstream schools in your area... also get him
assessed by a child psycologist so that you have in writing a medical
persons view on Jacobs behaviour (for a bit of backup to your
argument. I think Jacob needs a very special one-2-one who is very
experineced in this field to bring out the best in him. I would also
say that children cannot/shouldnt be discriminated against regardless
of their disability, and I dont think the school have this at the
forefront of their minds. If it were me i would get him assessed by a
psychologist (for weight to the argument) then get his statement
reviewed folliwng the recommendations..... Just my opinion though -
Good luck xxx
HI
Another point of view-
Our Christina now age 22- went to mainstream until she was 6 and 1/2
first year junior.
I felt as though you were relating my story many years ago-we were
advised my LEA she was suited at entry age for mainstream with part
time support- it wasn't long till they put forward for full time
realising what happened for support rest of day playtime etc.
she struggled to fit in with friends- i had several friends whose
children were same age and at times it made it more difficult as she
wasn't always able to fit in as she didn't develop socially at same
rate. This caused behaviour situations - particulary hitting, she
didn't have verbal ability to 'defend' herself. Yes she was asked
for tea to theur houses (remember they were my friends also)and was
extremely more comfortable on a 1-1.
Christina had hemispherectomy during her 6th year and the ability
social, physical and education just extended.
A joint decision was made and that september she moved to special
school- although I think inclusion is good and can suitable for many
children sometimes the special school offers them more. Christina
made her own friends and still has a friend she met when she first
went at age 6 - they are so close and amazing how they have helped
each other overcome obstacles.
The education was appropriate for her so avoided lots of
frustration. She was always challenged educationally and the social
aspect of school was of vital importance ot them as well. Even
though they go to special school doesn't mean they are excluded from
the 'mainstream' afterschool activities- cubs, swimming, tennis etc.
Christina went to Brownies and loved it.
Very often they at special school they do have a programme where
they can go to the local mainstream school for part of the week. It
what's best for the individual.
Hope iv'e made sense in what i've written,go with your instincts as
parents they are usually right!!
best wishes karen
Hi Trish
Thanks for your reply. There is only one special school in our area (it's about 9 miles away) I know a child that goes there and his Mum speaks very highly of it, I know others that have looked round and been impressed but of course we need to go ourselves.
Jacob doesn't have any 'good' friends, he just plays with a small group of boys but doesn't get invited round to play or for tea. Some days he is happy to go to school and others he really doesn't want to go. I did ask him the other day how he would feel if he went to another school and he didn't seem bothered by it, he was more interested in what the uniform was like!
You are right, I think we need to call a review and assess exactly how school are meeting (or not) his needs. During a meeting this week the head suggested we consider whether the school was right for him. My concerns are that he has had the 'naughty' label since he started in reception and they seem to struggle handling his 'mild' behaviour issues. The main focus of our discussions at school are his behaviour and not his progress. His teacher says put his difficulties aside he is a very naughty and very rude boy! I (and a doctor from CAMHS) have told her his difficulties affect his behaviour but she feels we are making excuses for him.
I just want them to see what a superstar he is considering everthing he has to put up with. We should be celebrating every little thing he does as it takes him so much more concentration and effort.
I know we have a lot of things to consider and I'm going to do a pros and cons list but advice from others is appreciated.
Thanks!
Christine x
Hi Lynn
Thanks for your reply. The social side is one of our concerns as well, having said that he doesn't have a 'best' friend at school he plays with a small number of boys but doesn't get invited round for tea or to play.
He has several cousins who he sees regularly and goes to weekly swimming lessons. We would have to think about him joining some other groups. He'll have a better social life than me! The special school we are thinking of is right next door to a mainstream primary and the children play together at breaks and lunch times. Other inclusion sessions are arranged as appropriate.
Jacob's support worker has only been in place since January of this year and he gets 20 hours per week. She is a nice lady but as you say I don't know that she is right for him. His statement says it should be someone experienced in complex needs but I don't think she is. We wanted to give the statement at least 12-18 months to see if it is making a difference but think it's going to be difficult to change school's attitude,
I have tried for the last 3 years.
We need to go and have a look round the school and call a review of his statement to see exactly how they are meeting his needs as the moment because I don't think they are.
Thanks again for your advice.
Christine x
Can't do Wednesdays
Trish
Claire sometimes has nosebleeds-fortunately not as spectacular as
Jacobs!- and the doc who did her laser treatment said it's probably
because the blood vessels in the PWS are more fragile especially
inside the nose. It might be worth pushing for an ENT appointment for
Hannah just to check there's nothing sinister going on up there!
Trish
Hi Donna
Jacob had a period last year where he had very bad nose bleeds, we literally had to hold a bowl under his nose. The blood was quite thin, perhaps a result of the aspirin he's on? I told his community paediatrician and she was going to refer him to ENT but we didn't receive the appointment. The nosebleeds stopped so I haven't chased it up but I'm keeping my eye on it.
It certainly wouldn't hurt to get it checked out, perhaps it's as a result of the cold but there's no harm in checking.
Hope you get it sorted and Hannah is well.
Christine
Hello everyone
Anyone had any problems with nose bleeds? Hannah has her PWS across at least 50% of her face and gums and I presume it must be inside her nose. She has had a bit of a snotty nose the last few weeks but it has now started bleeding - esp during the night. The blood is quite dark and thick and doesn't go too far but I am just wondering if I should be getting this checked out?
She is perfectly happy the rest of the time but screams if you even try to wipe her nose really gently
Thanks
Donna
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Right then, all we need to do is name a date. Whe is best for all of
you? If anybody else would like to join us please feel free.
Lynn X
Hi Christine
for what it's worth I wish Alex had gone to mainstream. He may not
have done well academically but the social side would have been just
as important. He does not have any friends locally as they were all
bussed in and I feel it would be easier for him to mix now.
Having said that, after his surgery, his behaviour was not a problem
so ours is a different kettle of fish. If Jacob could socialise in
other ways outside of school Scouts, local youth club etc) then
special ed. could be the answer. Alex received a 'different'
education at his special school, they were taught more life skills,
but he did get incredibly bored towards the end of his school years.
What exactly is the support Jacob is getting, is it a 1 to 1 support
worker? If so, a different support worker may be the answer, someone
more experienced in challenging behaviour.
Hope that helps a bit!
Take care
Lynn X
Hi everyone
Jacob is at mainstream school and is just coming to the end of Yr 2, he will be 7 in July! As some of you know since Jacob started in reception we have experienced difficulties (putting it mildly!) with school's handling of Jacob's behaviour and his very slow progress. School don't seem to understand how his complex difficulties can affect his behaviour, some days he is the model child and others he is really awkward and stubborn, can refuse to do his work, answer back and hit his friends.
In april last year I'd had enough and began the 'fight' for a special educational needs statement, we were granted this in November of last year for 20 hours per week. We hoped this would make a big difference but it hasn't had the impact we anticipated and are now seriously considering whether maintream is the right environment for Jacob or whether we should send him to a special school. I think if we moved him to another mainstream school we would encounter similar problems and friendships would already have been formed. He went to mainstream initially as he was meeting all his developmental milestones and there were no apparent problems at nursery. I do feel he would cope and progress better at mainstream if the support was used effectively and the understanding was there but don't think that's ever going to happen. I have tried very hard and had hundreds (well that's what it feels like) of meetings with school but am now unsure if I can ever change their attitude.
I just want Jacob to be happy and achieve the best he can, which I'm not sure he will there.
I know all our chidren have different needs but I would really appreciate all your thoughts on this, ultimately we have to make the decision but it would be really useful to hear other's experiences.
Karen the wedding phots are lovely - what a beautiful bridesmaid Christina makes.
Hope everyone is well
Christine x
(Mum to Jacob, age 6, SWS, PWS, Epilepsy, Glaucoma)
Why don't we all meet up at Liverpool 1...to support each other of
course, nothing to do with the shops!
Hi Shelley - Thanks for this - I do feel a special bond with Chrissy
obviously because we have so much in common... I feel exactly the same
about Dannys one2one at school becuase if it werent for people like her
there to support him I dont know where he'd be? I'm sure when you
decide for luke about college it will be right for him and you will
find some people there that you are happy about him being happy with.
its so hard though isnt it?
I am a trainer at the college I run the travel agency for the leisure
and tourism department and I assess candidates in their workplace too -
I love my job,and I really enjoy making a positive difference in young
peoples lives...
Lynn yes we should deffo meet up in livepool one sometime thatd be fun
x
Ingrid your posts to Karen are so lovely and positive. I think it is
brilliant that our youngsters have people like you around. I hope
when Luke finally goes to college there are people who understand, as
you do, there for him
Karen, no worries I wanted to know the truth warts and all and it is
helpful to know where to look for the bits that are covered over.
Will be in touch, love to Christina
Shelley x
OMG it is shopping heaven - we went over on the opening day - it was
rammed and I didnt get to check out the loos, I did however get my
eyebrows pulled out with cotton at the eyebrow bar in Debenhams - it
hurt but looked good the next day - I also bought some boss make-up
there - coz y have to eh??? he he!!! I do LOVE to shop - too much!!!! x
PS
Yes Mike is in the infantry, he has 6 years left until he has done his
22 years!! So we will stick it out for his pension seen as we have gone
this far!! We have had lots of support from the army as much as they
could along the way since Danny's been born - we did move home when he
was 1 to avoid the whole moving every 2 years rubbish coz as you know
Danny needed lots of specialists and continuous care to get him sorted
out in the early years with his fits...and the army life wasnt
condusive to this, so we have done married unaccompanied since then,
and he's had some Liverpool jobs too - he got back from Afghanistan in
April - safe and well thank god - and I told him he's never going again
so don't even ask me!!! ha ha!!!! tooooo scarey!! Good luck to your son
in civvy street... it sounds like he is set up.... where do you live?
Take care
Ingrid x
Hi again Karen
Danny is in Greenleas primary (Wallasey) with a one-2-one support
assistant full time. He had a hemispherectomy in Feb 06 and so far he
is since seizure free and off all meds (fingerscrossed!!) Mr O'brien at
AlderHey did his op, and his neuro is Dr Appleton, he has seen Dr Todd
for his bowel weakness - he goes to AlderHey for his glaucoma, and
laser on his birthmark.The physios and speech people see him at school
and his one-2-one takes him to clatterbridge for Physio group sessions
too. We have been lucky with our docs and although the LEA wanted Dan
in special school, I sent him to mainstream and am glad I have becuase
his speech has come on in leaps and bounds and he is learning to read
and write, and he thoroughly enjoys school which is FAB - he also has
disabled swimming lessons at Leasowe baths one-2-one which he LOVES
too. Danny is the complete opposite to shy - he will speak to anyone
and makes them speak to him if they don't straight away! - very
extrovert our Dan... he he!!
I really enjoy chatting with Christina, she does seem to really enjoy
college, and she inspires me because she has been through so much, and
still goes through it with her seizures and yet she still has a lovely
smile for everyone and enjoys her life. Not like some people who dont
have any idea of suffering and pain - and walk around moaning every day
about nothing... you know the type I mean...
Christina is a ray of sunshine x
have added photoof chrisitna at her brothers wedding 3/5/08, also
photo of paul(her brother) and jo.
the day was perfect, she was so worried she'd have a seizure but i was
so pleased for her she loved the day and night- as she loves music and
to dance.
karen
definetely will have to meet up, will give me an excuse to go to new
shops.
will arrange soon
karen
isn't it a small world. I am aware of all the contacts of the sturge
weber group- i've known lynn for 20 years- we met in the early
years. wasn't able to join you all last year but do hope to if you
meet again. Christina has enjoyed her chats with you, she has really
come on several years ago she would never have spoken to someone she
didn't know.
She is very determined thank goodness, she loves college and having
the 1-1 carer is great for her and ourselves, i know she always has
someone to oversee her as teaching staff have other students to look
after.
I believe your husband is in army, how's things going with him? Paul
Christina's brother is coming out September- he has done 6years-
with 29 commando's. Luckily he has a job offer with cheshire fire-
army haven't really helped in his leaving year- he could have
started with fire service in april but they wouldn't give him early
release. Next course was august but has been put back to october.
he's counting the days left now. it's a shame they have been like
this as he has enjoyed his time just ready for a change and to be
home, he got married in may.
we spent many years at arrowe park claterbridge and alder hey, adult
services are not quite as personal. Dr Todd was Christina's
peaditrican and Dr Appleton at Alder Hey.
What school does Danny go to? karen
Hi Karen
Yes its me..... what a small world???
I saw christina today - she came in to say Hi to me at work.... we have
chatted in recent months because one day she was telling me with her
support girl that she couldnt get the picture cards she needed, and I
was advising on how to go about pushing for them... a group of
Christinas friends were also there and they were all collectively
talking about hospitals and seizures and I mentioned about Danny as I
suspected that Christina also had SWS, and she was really interested to
know about him, as I was about Christina so we got chatting. Then one
day I saw her having a seizure in the canteen and went over to offer
help, but her support girl (cant remember her name!!) had Christina
comfortable and safe, so I just waited till she was over it and checked
everything was okay - I think she came home early that day... Karen
your Christina is sooooo lovely. when she visited today she asked for
my mobile number for you to have a chat with me, and I couldnt remember
the website for this group - no need eh? you're allready on here!!!
Say Hi to christina for me.... x
Hi Karen
so good to hear from you, I was wondering what you were up to. I'm
glad you have finally had some success with Christina. Let's hope you
get a more modern Dr when your dinasour retires!
Congratulations to Paul, I'm glad you all enjoyed the wedding.
Trish's Clare was 30 last week and she is having a party on Saturday, I
feel so old, I remember meeting her when she was only 9!
Why don't you come across and you can see our swanky new shopping
centre. At last we have some decent toilets lol!
Take care
Lynn
---
Miracle drug is amitriptlyine- targets facial pain- if aonly they
had listened to christina more she may not have suffered for 12mths.
The last few mths i have learnt a little more about christina's
symptoms- she talked about her arm pumping- we were looked at
peculiar when we said this to docs- since being on sturge weber chat
america i realise that they are real symptoms- it gives me
confidence to fight her cause when you see other parents saying
exact description without ever having met or chatted to them. I
decided i'm printing any comments that are same as chrisitna says
and keeping a file. our neurolisgt is retiring next month- he is a
professor and doesn't like me saying anything i've read on internet,
so i'm hoping our new doctor will recognise that sometimes the
exchange of information is helpful.
How far are you in application for david lewis-we live about 1hr
from there. it does have all the epliepsy doctors etc on site
therefore very helpful if changes are made. the clinic/ward they
have is for college term time students and residents who live there
permanetly.
i would rather talk to you as it's difficult to say in writing.
Christina only stayed for 18mths - don't immediatley feel negative
about that as everyone is individual and our christina is very
reliant on us for expressing her emotions.
when is best time to call you?
karen
just rechecked site and couldn't believe the terrible spelling
mistakes- karen
Please tell me more Karen, were you happy with it? Our main reason for
wanting Luke to go there is that he needs to learn independence skills
that he will never learn whilst he lives with us. Teaching him that
though is going to make the behaviour worse, as anything more than an
easy option is beyond him. Also and more importantly it may be that
different drugs would help but we need somewhere with help on site
before we will agree to changes in his medication anywhere other than
at home.
We know we will have a fight on our hands and to know someone else
with SWS went there may help our case
Really glad to hear Christina is pain free at last, what is this
miracle drug?
Shelley x
Do you work at conway park- our Christina has told me she ahs met
someone who's young baoy has sws,
Hi Shelley- have jsut got back on site- have been so busy tryinf g to
get sorted with Christina- finally on medication for pain and after 12
mths she is able to go back to college and enjoy. Long story!!!!!!!
Our Christina went to David Lewis Centre.
luv karenx
sorry so long but haven't had anytime- have come out of the 'tunnel'-
at one stage didn't think there would be an end to the pain Christina
was suffering but eventually after 12 mths she was given a new drug
and success - has been pain free.(fingers x)
Our paul got married i will put acouple of pics on for you to see-
Chrisitna was a bridesmaid- Had a great day - and bril evening.
Will put on tomorow when i have worked out how to. Hope all family well
luv karenx
Happy birthday to Claire,
happy birthday to Claire,
happy birthday dear Claire,
happy birthday to you!!!
Hooray!!
sorry it is one day late, I hope you had a good one!!!
Antonia xx
Just to let you all know that Claire will be celebrating her 30th
birthday tomorrow. Not bad when they told us she might not see her
teens!!
Trish
A very very happy birthday to Claire.
Well done all of you
love Shelley, Tim and Luke xxx
Hi Angela
Alex has been on Clobazam countless times, for varying periods of time. Its also our first line rescue med, although it hasn't worked the last few times we have used it like that. He's just coming off it now, after 6 weeks (that is very unusual, but it was the only thing controlling him while his regular medicines were being played around with.) We find clobazam does definitely reduce seizure activity in the short bursts of 3 or 5 days, but we sometimes find that Alex can sleep a lot less when taking it - and it can produce headaches and grumpiness.
Really hope it works for Benjamin
Emma xx
Hi All
I wanted to add to the hospital debate that I agree that there are
good and bad professionals in all walks of life - I have had really
good experiences with Dan at Alder Hey in Liverpool - Paul Mays
colleague Donegher O'Brien did Dannys hemi-op and he was fantastic in
every way possible - how clever too, he really got Mike's and my
minds sorted when we were Dan was going through that, and the staff
on all the wards I found amazing... Danny is well known at alder Hey,
and ArrowePark and clatterbridge as he goes regularly for various
support and appointments, and I have found everyone on the whole
great - except I found that at ArrowePark (our local general
hospital) they arent very familiar with SWS and I decided upon one
admission to the childrens ward that I would take Danny to A&E
alderhey next time becuase thats where the neuros work and they are
who he needed.... Having said all that Danny was born at
Northallerton hospital in North yorkshire - a small cottage hospital
and the Paediatric consultant warned me about SWS the next day and
then saw us every 6 weeks until he started to fit - she regularly
rang Leeds Royal Infirmary for advice from the Neuros there regarding
Dannys medication and seizures, and took their lead. I couldnt fault
Dr Essex Cater for her intuition and commitment to Danny (even though
I hated her when we first met!!!)We did move to the Wirral though and
bought our house here becuase we needed Danny to be under one
specialist hospital to get him sorted - and we needed him out of the
army environment where they move you every two years - becuase Dan
needed (and still does) continuity of care...
I did find when we were based in Yorkshire that MRI's went missing in
between hopsitals and needed repeating etc etc - just pure logistics
but very annoying when Dan had to have more anaesthetocs for more
scans etc.... glad we moved down here for Alder Hey...
There you go - had my say now - I'll get off me soapbox!!
Ingrid
Hi Laura
Just wanted to say that I am glad that the Dr's have finally taken notice of what you have been trying to tell them and that they are going to investigate what's been causing Ashton's symptoms.
As Ingrid said just enjoy Ashton by giving him the cuddles he needs and dont forget you.
Just got back from GOSH - megans pressure is dropping so the new eye drops are working. Good news. Back up there in August.
take care
chantelle x
--- On Mon, 2/6/08, missakura18 <missakura18@...
From: missakura18 <missakura18@...
Subject: [sturge-weber] Re: Any news?
Hi Laura
I'm glad you have gotten Ashton into hospital because now it is for the
doctors to take the responsibility to find out what the problem is and
you can concentrate on cuddling Ashton and being there as his mummy
rather than also his Doc!! It is a huge responsibility being a parent
of any child, but wondering whether or not they are fitting and not
really knowing what to do about it is horrendous especially when you
have had ridiculous medical advice from your GP... Ashton is now gonna
get sorted - be assured of that because he is there on the ward and the
consultants there will communicate with their nearest SWS/neuro expert
regarding his seizures if he continues to have them, and will look into
all possible causes of his discomfort - the reason I know they will is
because you will make sure they sort him out and make him better. you
are in the best place - hang in there and keep your chin up. Well done
for getting him seen early and Good Luck.thinking of you all...
Ingrid
They are not the be all and end all of Sturge Weber. Yes they have a
SWS clinic, but other neurologists and other hospitals can and do cope
just as well.
We weren't referred to GOSH until surgery was a consideration. Our
Paediatrician at our local hospital diagnosed Luke the day he was
born. He told us what to look for and what to do. He successfully
treated Lukes seizures and our local hospital looked after him well
even during his status episode.
Luke had his hemi at GOSH under Mr Harkness and I have to say whilst
surgery was fine, their after care left a lot to be desired. His
drains came out too early causing a build up of pressure, they gave
him Codeine resulting in a horrendous constipation problem needing
several enemas and causing vomiting and they discharged us with
nothing in place except get in touch with your local hospital. They
did not send any paperwork to our local hospital, we had to arrange
all his physio and aftercare ourselves, with yet again the help of our
Paediatrician and local hospital.
That said I had tremendous faith in Helen Cross, but sadly she moved
on to greater things and we saw less and less of her.
When Luke's seizures returned I rang GOSH, the first person to ring me
back had looked at his xray the wrong way round and kept talking about
a right hemi. We were then admitted for a 4 day assessment. I had to
keep ringing for the results and we were sent an appointment with
Sarah Aylett for a couple of weeks later. Firstly they lost all the
reports and then she said "I haven't had a chance to look at Luke's
MRI scans we can look together". Sorry but I want someone who makes
me feel they know what is what and has taken the time to look at my
son's scans before I arrive. She talked about further surgery and we
asked for a second opinion and for a referral to the John Radcliff in
Oxford. After 3 months of constant phone calls between us and GOSH,
the JR and GOSH to get a referral letter and Luke's MRI scans sent
across, the Consultant's secretary said, just get your GP to refer him
and we will start again. So poor Luke had to have another anaesthetic
and an MRI because GOSH couldn't get their arses in gear.......again.
So whilst I am eternally grateful for Luke's surgery, I know people
who have had as good an outcome and FAR FAR better aftercare under
Professor Polkey at The Maudsley (now sadly retired), Chris Adams at
the John Radcliffe (now also retired) and Paul May in Liverpool. I
will also always wonder what would have happened if Luke had had a
complete hemispherectomy as favoured by other Neurosurgeons and not
the fairly new procedure of a functional hemispherectomy as favoured
by Mr Harkness. Would his seizures have returned? We will never
know, but as I said I am grateful for what I have.
I hope you will forgive me for saying this, but I just want those of
you that are not under GOSH to know, there are alternatives and they
are often good ones.
Shelley
I echo your sentiments Shelley, our experience with the care at Alder
Hey was a good one. I could ring any time and get an instant
appointment and felt that I was always listened to. On the other
hand, there is bound to be the odd report of bad experiences in any
hospital.
Lynn
Hi Ingrid
I have just been talking to Trish who was asking me if I have heard
anything but I haven't. My thoughts are the same as yours, maybe they
are at the hospital.
Fingers crossed for them hey?
Lynn
Hi all
Has anyone heard from Laura? I hope little Ashton is okay... Maybe they
have been admitted and thats why we havent heard - God I so hope that
they have been seen by someone medical who can help. best wishes Laura
when you read this.
Ingrid
Hallo allemaal,
Wilde even reageren op het fenomeen thuiszorg. Er is al heel wat over
geschreven en om op allemaal te reageren vond ik teveel.
Ik heb zelf al 9 jaar thuiszorg voor 4 uur in de week. Mijn betalingen aan
CAK lopen gesmeerd, iedere maand een rekening. Waarom loopt het bij jullie
niet goed, zou toch niet mogen. Ben daar heel verbaast over. Is het niet
mogelijk om contact op tenemen met CAK en te vragen of ze iedere maand een
rekening sturen?
Het verbaast mij dat er zo verschillend gereageerd wordt als je hulp
aanvraagt. Volgens mij is er een overkoepelende organisatie waar je vragen
kan stellen.
De huisarts maakt uit of je hulp nodig heeft en niet de St. Thuiszorg. De
bijdrage is naar inkomen wat ik zelf redelijk vind, ook kan je het nog
aftrekken van de belasting.
In 2006 veranderd het een en ander maar dat is geen reden om alles maar op
zijn beloop te laten. Als je met twee kleine kinderen zit heb je gewoon hulp
nodig. Als whiplasher kan je al zo weinig laat staan het hele huishouden
doen.
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
Yes, that would be great. Let me know when you will be down next. My brother in law lives in Hayle. Just off to fly the kites with the kids and their getting impatient! better go!
Speak soon
chantelle
--- On Sat, 31/5/08, fran bates <batesfran@...
From: fran bates <batesfran@...
Subject: [sturge-weber] fao Chantelle
Laura- I agree with Fran and Ingrid. I think you should take Ashton
to your nearest A and E as soon as possible.
Good Luck
Trish x
Hiya Chantelle,
Finns doing fine thanks, progressing well and enjoying school. He had laser number 12 last week. I have asked our local paed for a referral to the SWS clinic at GOS, so we are waiting to hear from them.
My in- laws live quite close to you...Hayle. So next time we go down to visit them do you fancy meeting up for a coffee?
Fran
--- On Sat, 31/5/08, Chantelle <chantellgren@...
From: Chantelle <chantellgren@...
Subject: [sturge-weber] Re: New to this group.
Laura,
I wanted to agree absolutely with everything that Ingrid has said - with respect to your GP what he has said about not worrying about the small ones is absolute rubbish!! He needs anti-convulsant medecation to keep them under contreol ASAP and that means seeing a consultant. The fastest route is A&E I'm afraid, but if he was mine and knowing what I do now I would take him and insist that someone who knows at least something about SWS sees him. Every seizure matters with this condition no matter how small...it is not like ordinary epilepsy. Small ones can grow to big ones and it's best to stop them now...if a doctor has confirmed they are seizures (see, your mummy instinct was right) they will not stop by themselves (at least not for long) and stopping them is your priority above everything else. I don't want to be alarmist in any way, I just wish I had had someone to tell me like it was in the early days. I am sorry to hear they have started, but try not to worry, it can be
sorted and you have plenty of support here,
Fran
--- On Sat, 31/5/08, missakura18 <missakura18@...
From: missakura18 <missakura18@...
Subject: [sturge-weber] Re: New to this group.
forgot my name!!!Ooooppps.
it was me who the messgae below!
chantelle
--- On Thu, 29/5/08, chantelle grenfell <chantellgren@...
From: chantelle grenfell <chantellgren@...
Subject: Re: [sturge-weber] Re: New to this group.
Hi Laura
I have been in this situation with Megan when she had a stroke like episode in Oct 2006 - saw 5 Drs to be told she has Gastroenteritis and post viral fatigue!!! They even knew megans past medical history and still didnt referr us to our local hospital.
In the end I phoned NHS direct explained what was happening to Megan and also that in the past the Drs thought megan has Sturge Weber and she contacted our local Hosp, Treliske and spoke with the Paediatric Consultant who asked us to come straight in.
Most Dr's as you say have never heard of SWS and I have been told that SWS seizures are not the same as people with Epilepsy. Instead of passing you off as a mother whos being paranoid they should listen and follow up your concerns.
If you feel that Ashton's behaviour is out of the ordinary then I would try NHS direct and explain everything and your concerns.
Hope this helps.
chantelle
--- On Wed, 28/5/08, missakura18 <missakura18@...
From: missakura18 <missakura18@...
Subject: [sturge-weber] Re: New to this group.
Hi Ingrid
Thanks for your reply. Miles has been booked in for another MRI on monday. Miles doctors think that the blood vessels in his brain have thinned out and therfore the blood isnt travelling aroung as it should. Miles dad also has a condition called factor 5 lyden which means his blood is more likely to clot. This condition is hereditory but miles cant be tested because he is on Asprin. I have everything I have 2 of crossed and hope this the results of the MRI come back ok, I will keep in touch and let you all know how he gets on. The extra worry is that we are off to Mallorca for 3 weeks in a fortnight and I dont know wether to cancel or just go and hope everything will be ok.
Rachael.
Well done Angela!
I could have come to meet you with refreshments in Edinburgh, if I had organised it!
I keep saying Hannah was 16 weeks when she started having seizures but I think it was actually 14 weeks, same as Benjamin. So hard to remember!
Donna
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Hi Laura
Ingrid here, Dannys mum...
reading your posts I know exactly what you are going through, I was
told the day after Danny was born and was very alone and very worried
about it all - I did at first go home and convince myself that all
the docs were evil for saying he might have SWS, and that they were
wrong. However when he was 9 weeks old I rang the health visitor
asking her what collick looks like and when I described to her what
Dannyw was doing - he was rushed into hospital having seizures... he
was put on anticonvulsants straight away and that was the start of
his epilepsy and confirmation that he did indeed have SWS. As time
went by Danny also developed the other problems associated with this
condition - glaucoma, left hemiplegia (weakness left limbs) blindness
to left in both eyes (hemaniopia) and learning difficulties. He is 6
now and we are through the dark tunnel a bit more as he had a
hemispherectomy operation in feb 06 to combat his epilepsy, and has
made good progress sinvce then and is seizure free so far (touch
wood!) He goes to mainstream school with a one-2-one support
assistant to help him physivcally and educationaly - he is the most
happy little mad boy you have ever met - he doesnt let anyone get
away with not speaking to him, and leaves a lasting impression on
everyone he meets!! life isnt always easy with SWS, as you allready
know but like the others said make the most of every day that ashton
is well and develping normally as everyone's experiences are
different so no-one can give you a crystal ball reading at the
moment. just a tip though - most children wont keep their eyes open
for a glaucoma check which involves blowing air into the eye - and as
this is a very serious condition which needs to be monitored
regularly - Danny had his eyes checked for this under anaesthetic at
Alder Hey childrens hospital - they put him under using Ketamyn which
is anaesthetic which doesnt affect the eye pressures.... they usually
chekced it under the same anaesthetic they used for his laser - which
by the way he has only been having for about 2 years now as he was
having the brain sorted before this... if there is anything you need
to know post it on this site as someone will have come across it
probably before and everyone is very supportive. Most of all though
take care of yourself and Ashton and keep your chin up and be strong.
ingrid x
Hi Rachel
Ingrid here, Danny's mum
(6yrs,epilepsy,hemiplegia,glaucoma,hemispherectomy feb 06)
I just read your post about Miles getting sudden weakness down his weak
side.... before Dannys operation when he was having regular seizures -
he did exactly like you say Miles did a few times and we immediately
took him to hospital to get him checked out, and he was actually
recovered by the time we got there but when we discussed this with his
neurogoligist he said it sounded like "todds paralysis" which is the
sudden loss of use of the weak side for a short period with no pain..
Danny suddenly dropped to the floor and his left leg wouldnt work at
all and he couldnt get up and it was dead! Then after about 10 minutes
he was able to use it again... I was extremely concerend about strokes
as this hadnt happened before to him and I was worried it showed
acceleration of his condition, but it did oly happen a few times, and
hasnt happened since he has been seizure free (post-hemi-op) so I think
it was neurological rather than physical... I hope this similar
experience of Danny's helps you a little to not panick until you can
get to speak to his neuro... Take care
ingrid x
I don't understand that, you are logged in as you can send messages so
you should be able to access photos.
Shelley
have you got the menu on the left hand side? The one with Home at the
top. What happens when you click on Photos? Have you tried going to
the home page and clicking where it says 21 new photos?
Let me know what happens when you do this.
Lynn X
It really is difficult to say, but the twitching is a bit worrying.
If he does it again, hold his hand or foot and see if you can stop
it. Just after Luke had his surgery I took him for physio and he was
in his buggy and I looked down and his leg was rhythmically moving. I
was panic stricken, but the physio just picked it up put it down and
said 'he is just resting it on a nerve like we all do' but I just
panicked and thought the worst.
I think Lynn has given you some sound advice.
For some reason I can't access the photo's. LYNN HELP!!!!
shelley x
Hi Shelley
Alex has the middle rate for care and the higher rate for mobility,
he was given the award for life but I am aware that it can be taken
off him. He was given the life award after his surgery, I think the
fact that he was paralysed contributed to their decision. I think he
will be assessed again soon and there is always the possibility that
things might change.
I think a lot is down to how you fill in your form. If you have a
welfare rights team anywhere I would ask them to do it for you. They
did ours last time Alex was reassessed and they put things that I
would never have thought of. I would also recommend people appeal if
they are not happy with the decision, from what I have heard, most
appeals are upheld.
Lynn X
Hi all
we are back from our hols in sunny Spain. I have had a quick look at
the e-mails and will deal with any misuse ASAP. I will also post some
responses to everyones emails when I get a chance.
Take care
Lynn X
Hi Georgina
Congratulations and well done on the safe arrival of Nathan's beautiful new baby sister. They both look gorgeous and Nathan is looking so gently at her. I have a lovely photo of Jacob (at 22 months) holding his new baby sister so lovingly. At the moment they are arguing like mad over Jacob going in her room and messing up!
Better go and sort it out.........
Take care
Christine x
Hi hun.
They are beautiful both of them. Iam going to be so scared of having my
next baby :/ I keep thinking that i will get another baby with
problems...i dont think iam going to ahve another child for a while.
Yeah i guess it does vary i would like ashton to start his lazer
treatment tho, because they said he will need over 12 treatments so if
thats the case they should start him earlier i think...when i go to my
next neo appointment i will mension to her about it ashton having his
treatments earlier and see what she says.
take care and look after that little baby.
laura xx
Hi everyone
Just a few lines to let you know that Nathan's little sister arrived on
13 May. Holly Ann was 3 weeks early - I had only finished work a few
days before! She weighed 5lb 11oz and Nathan loves her to pieces. Have
posted a piccie of the proud big brother!
Georgina x
Hoi
wil het toch ff kwijt heb jullie verteld van mijn man en dat zijn emoties naar
mij gevoel weg is .nu komen we er achter dat het veel ingrijpend is dan dat
wat mijn man dacht .
Hij kan mijn problemen die hij altijd aan kon niet meer erbij hebben hij
stond eigenlijk altijd voor me klaar en ik kon altijd op hem terug vallen
ivm de klachten ed .Hij wilde eigenlijk dit door blijven doen maar ik zelf
denk dat hij zijn grens niet aan gaf en ten koste van hem zelf door zijn
whiplash de man wilde zijn die hij wilde maar vergat dat zijn whiplash dat
niet toe liet maar toch wilde hij dit voel houden .En ik zelf denk dat als je
dit toch wilt blijven doen het gevoel voor die ander (ik dus ) vanzelf danweg
gaat .Want ik zelf snap heel goed heb dit ook naar mijn kids toe dat je aan
een beeld wil voldoen of een moeder die altijd klaar staat en als dit niet
lukt voel je je schuldig .Het beeld wat je heb van een moeder die altijd
luisterd en waar je op terug kan vallen .Denk dat mijn man dat ook heeft want
hij wil er zijn voor zijn gezin voor zijn kinderen en mij maar door de
beperkingen lukt dit niet .
Ook komt hij er achter dat hij vlucht gedrag heeft zijn hobby is eenvlucht
geworden om maar niet geconfronteerd te worden metde beperkingen en nu moet
hij leren dat hij een grens heeft .
Je wilt zo graag klaar staan voor je gezin of voor je man maardoor de
whiplash heb je genoeg aan jezelf en dan is het dus heel moeilijk om ook nog
voor een andere klaar te staan .Ik heb dat zelf ook door mijn klachten ed
dat je wilt wel maar het lukt gewoon niet en dat is dus heel moeilijk te
accepteren voor jezelf want je kan wel tegen andere zeggen van geef je grens
aan als het niet kan maar dan is het voor een andere en nu ben je het zelf .
Ik heb jaren in de thuiszorg gewerkt en als ik in een gezin was dan zei ik
altijd als het niet lukt dan geeft het niet dan doe ik het wel maar ik heb
ook zelf thuiszorge gehad en dan zit je op een andere stoel en dan voel je
hoe het is als je het zelf niet kan en dat een andere het voor jou moet doen
en dan besef je pas eigenlijk wat hetis als je het zelf niet meer kan of
minder of dat je veel meer tijd nodig hebt .
Maar goed heb vanalles hier neer geschreven misschien heeft iemand er iets
aan of herkend het want een whiplash wordt zwaar onderschat en zelf door mijn
man die zelf een whiplash heeft misschien is dit ook een proces en kan je het
voor jezelf ook ontkennen dat je niet meer degene bent die je voor je ongeluk
was .En dat is dus ook een heel proces .
wens jullie sterkte en fijn dat ik het ff van me af kan schrijven
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 angela
Thanks i will try not to stress myself out about it :) Even with all
the stress of finding out about ashtons condition he has still come out
a really happy contented baby, the amount i have cryed over this i am
suprised he isnt upset all the time, but i try to do it when he is in
bed i just love him so much its hard not to worry about him.
When i had a baby i never knew the amount of love that over whelms you
when they are born and then when you learn they have a problem it
breaks your heart to know that your baby this precious person who you
love so much is going to have problems and most probally wont grow up
and have an entirely normal adulthood.
Sorry Ranting on here. Its nice to know that i have all you ladies to
chat to because you are all so kind and lovely.
love laura xx
Hi christine,
We have had so much trouble with the eye infimary they are useless
ashton was seen at 2 weeks old but they couldnt tell because he didnt
want to open his eyes, so we were then suppost to see him at 4 months
but that didnt happen but in the end we seen him two weeks ago where
he said ashton had glaucoma, but has refered us to a consultant which
is who we were suppost to be seeing in the first place.
So you were told two aswell, i wanted ashtons lazer surgery to start
straight away didnt know you had to wait till they were two.
Iam trying so hard to think possive but its really hard not to think
of the bad things you know. At the moment he is acting like a normal
baby he is sitting up, rolling over babbling to his heart contents so
atm i feel i can be possive but when the doctors are so unpossive its
hard to be isnt it.
just recently ashton has been like slowly shaking his head during his
meals and i didnt know if its him doing it or if he is having a
seizer, i guess iam just being silly. Its so nice to have other
people with children with sws to speak to its such a relife...i was
feeling so alone and now i feel so much more happier knowing that i
have you guys to speak to, Your all so so lovely.
Thanks on the photo comment i havent looked at the photos to see if
your lil boy is on there i will now.
Love laura xx
Hi all & welcome new members,
I have added some piccys from the bike ride we finished at around 4pm
on saturday, we did however only cover 220 miles as Benjamin was
taken to hospital with seizures so i cut it short and only rode to
first Edinburgh sign instead of Cowdenbeath which was the orignal
plan.
Benjamin was only kept in over night so is home again full of a cold
poor love :-( and still having a few seizures daily.
The DLA Benjamin gets was only a 18 month award i am still waiting on
news of our reclaim i never knew they did longer awards.
To Ashton's mum Benjamin was 14 weeks old when he had his first
seizure and like everyone else has said if Aston does develop them
you will be able to tell because it is not the normal for him. Good
luck and enjoy him now do not stress yourself over what may never
happen to him as all cases are different.
Hope everyone is well
Angela x x
JE KOMT TOCH OOK ?
Als het goed is hebben jullie allemaal persoonlijk een uitnodiging ontvangen
voor alweer de 8e ontmoetingsdag voor mensen met een whiplash en
betrokkenen. De dag zag gehouden worden op 4 september a.s. in hartje
Nederland in het comfortabele en rustieke conferentiecentrum Kaap Doorn te
Doorn, 25km ten westen van Utrecht. Je komt met trein + treintaxi of
parkeert de auto gewoon voor de deur; er zijn geen obstakels, dus ideaal
als je met hulpmiddelen (rolstoel etc.) werkt.
ONTVANGST
Vanaf 12:30 uur ben je van harte welkom, de eerste presentatie is om 13:30.
Bij binnenkomst zal ons vriendelijke team van gastheren en gastdames je
inschrijven, een badge geven en welkom heten met een gratis alcoholvrije
cocktail en rondleiding. Het ontvangstteam weet uit ervaring ook alles van
whiplash.
INFORMATIE
Gedurende de dag zullen er in de grote zaal een drietal presentaties zijn
over actuele onderwerpen.
Om 13.30 uur zal Wouter van Eldik de nieuwe Stichting (Post) Whiplash
Syndroom (SPWS) presenteren en alle vrijwillige medewerkers die vaak achter
de schermen actief zijn aan jullie voorstellen.
Aansluitend zal Anton de Haas in de recreatieruimten (bar, terras, tuinen)
je spelenderwijs kennis laten maken met elkaar zodat je de rest van de
dag voornamelijk "bekenden" zult tegenkomen.
Om 15:30 uur zal de humorvolle Paul Donker, acupuncturist met een geheel
eigen aanpak en visie op whiplash, zijn medische kijk op whiplash met je
uitwisselen. Ook zal hij ingaan op de sociaal psychologische kant van de
zaak, de problemen met communicatie etc..
Na een korte pauze zal Peter Ruijzendaal, advocaat die gespecialiseerd is in
whiplashzaken berichten over de laatste juridische ontwikkelingen.
Aansluitend kun je in de middag of avond van hem of van één van de andere
speciale whiplash advocaten een gratis individueel gesprek krijgen over je
zaak met de tegenpartij of de WAO etc.
DINER
Tegen 18:30 uur wordt er in de Toscaanse eetzaal een 3 gangen 5 sterren
diner geserveerd. 2 topkoks maken hun gekoesterde predikaat 5-sterren-kok
waar met een culinaire prestatie van formaat. Mousse van Achterham met grove
mosterdsaus; Kogelbiefstuk afgelakt met madeira knoflook stroop geserveerd
met prei pepersaus; Coupe met verse aardbeien, cassisroom en vanille-ijs.
Wil je wat anders eten dan kan dat ook, vegetarische, vis en dieetwensen
zijn voor de koks een uitdaging.
ONTSPANNING
De gehele dag en avond tot 01.00uur kun je echt genieten van persoonlijke
ontmoetingen met lotgenoten van de lijst, het forum, de chatbox, de club
etc.. Je ervaart blijde herkenning met andere whiplashers die je niks hoeft
uit te leggen, maar met een woord begrijpen. Deze dag is echt een
thuiskomen. De gehele dag staat het lotgenotencontact op de voorgrond.
RUSTEN
We weten dat zo'n dag ook vermoeiend kan zijn en dat dat een belemmering zou
kunnen zijn om te komen. Dat is echter totaal niet nodig: er een aantal
hotelkamers gratis beschikbaar om afgezonderd te rusten zolang en zo vaak
als je wilt, "niks moet, alles mag".
KAAP DOORN
Er is een warm aangeklede bar/lounge met royale stoelen en aangrenzend is er
een zeer ruime zonrijke en half overdekt en eventuele verwarmd buitenterras
met comfortabele stoelen. Tussen en rond de vleugelgebouwen van het centrum
zijn knusse natuurtuinen met waterpartijen en met diverse zitjes voor
intieme persoonlijke gesprekken. Ook heeft het centrum een eigen bos en ligt
er vlakbij een rustieke paddenpoel. Kortom een oase van rust en ontspanning
en ruime mogelijkheden voor prachtige korte of wat langere wandelingen. Het
eigen bos loopt over in de Kaapse Bossen wat weer een onderdeel is van het
grote natuurpark de Utrechtse Heuvelrug.
OVERNACHTEN
Er zijn 70 hotelkamers welke comfortabel zijn ingericht en voorzien van
douche, toilet, TV en telefoon. Een aantal kamers is aangepast voor
mindervaliden en er is een lift aanwezig.
FOTO'S
Omdat het centrum en de omgeving werkelijk erg mooi zijn hebben we speciaal
eigen foto's gemaakt. kijk op http://www.spws.nl/ontm-doorn-foto.html
POSTER
Wil je svp meehelpen deze dag overal bekend te maken? Het is fijn als
whiplashers die geen internet hebben of die anderszins nog niet van deze dag
op de hoogte zijn ook kunnen komen. Op http://www.spws.nl/ontm-doorn.doc
kun je de poster in Word formaat downloaden. Print hem zo vaak uit als er
mogelijkheden zijn om hem op te hangen bij bijv. huisarts, fysiotherapeut,
ziekenhuis, revalidatiecentrum, reïntegratiecentrum, advocaat, winkel,
prikbord, etc..
ENTREE
De entree is 12,50, let wel dat is inclusief onbeperkt koffie, thee en/of
bronwater, een cocktail, een broodje, presentaties en evt. consult. (zonder
reserveren 15,-) Overige consumpties kosten 1 bon; buitenlands
gedistilleerd: 2 bonnen; een bon kun je kopen en als je ze overhoud weer
inleveren voor 2,- per stuk. Het diner is 25,- (zonder reserveren
30,-), een kamer is 65,- (1 pers.) 100,- (2 pers.) inclusief
ontbijtbuffet.
SPONSORS
Dankzij de sponsors kunnen we deze dag betaalbaar houden. Zij zorgen ervoor
dat we de entreeprijs hebben kunnen halveren, en het diner en de
overnachting met fikse korting kunnen aanbieden.
Conferentiecentrum Kaap Doorn, Postweg 9, 3941 KA Doorn, www.kaapdoorn.nl
Whiplash-Advocaten-Nederland, www.whiplashadvocaten.nl
Van As Administratief Beheer, De Ruyterstraat 41, 1271 ST Huizen
BlueYellow webhosting, www.blueyellow.nl
AANMELDEN
Meld je svp van te voren aan. Dat is zeker nodig als je een gesprek met een
whiplash advocaat wil of wilt dineren of overnachten. Meld je aan middels
het formulier op onze speciale internetpagina
http://www.spws.nl/ontm-doorn.html. Je evt. partner nodigen we natuurlijk
ook uit mee te komen naar deze dag. Maak bijtijds de kosten voor entree +
evt. diner + evt. overnachting over op giro 1205290 van Whiplash Ontmoeting,
Almere. Als je problemen hebt met het formulier kun je ons ook bellen
(0485-455590 of 036-5386170) of alle gegevens e-mailen aan
Hallo lotgenoten,
Het is voor mij de eerste keer dat ik naar de ontmoetingsdag ga. Het lijkt
me namelijk leuk om eindelijk de gezichten achter de berichten te zien maar
ook vooral het feit dat je omringt bent met mensen die je gewoon begrijpen
en weten wat het is wat we dagelijks door moeten maken. Zoals vele onder ons
het soms heel moeilijk hebben lijkt het me fijn om in de rustige omgeving
elkaar te spreken.....ik vraag me af wie er al vaker is geweest en zo ja wat
is je ervaring?
De mogelijkheid die ons geboden word om wat vragen te stellen aan een
jurist lijkt me in deze chaotische tijden een goede kans om er gebruik van
te maken.
Ik ben benieuwd naar de reacties, ik zelf heb er erg veel zin in namelijk.
Groetjes
Lia
_ _ _ _ _ _ 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 Laura
My son Jacob is 6, (7 in July) and reading your emails reminded me of all the feelings I had when he was first born. The thing I found difficult to cope with was the fact of not knowing how Jacob would be affected, beeing told to to 'wait and see' is not what you want to hear, you just want answers which no-one can give. I decided then to try to focus on the things he can do and try to stay positive which is far from easy at times.
Jacob is a gorgeous boy with a wicked smile and a will of iron! He has Epilepsy, his first seizure being around 15 months, although I think we missed some earlier ones because we didn't really know what to look for. He has complex partial seizures where he goes quiet, stares into space and makes swallowing noises, his eyes, arm and leg can also roll to the right. Afterwards he goes to sleep for a while to re