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Who is this clown?

Hi Shelley,

I have never heard of 10 year or lifetime awards! Finlay has the higher rate, but our award was for 5 years - runs out in 2010. My main concern is if he loses the higher rate mobility we lose our car!! So far my main involvement with DLA has been with families of younger kids, maybe things are different for different age groups? I suppose where a child is involved their condition can change more so than an adult. It's a very interesting question, and I would love to know the answer so do let us know if you find anything out. I don't understand how they decide who gets what - it seems very unfair sometimes, especially if you're not very good with form-filling.

Finn has been doing fine, until this week when he has had two seizure episodes...always early morning in bed. We have a routine appointment with our local pead on Friday luckily - could be he just needs his meds increasing as he's growing so fast. He still has the odd drop, but very few and far between. I am going to ask the doc about getting a referral to the SW clinic at GOS ...we have always dealt with Alder Hey and thats fine but I feel he would benefit from a more thorough investigation by people who may be slightly more familiar with the condition. Last year when we were being booked in on the ward for the hemi-that-never-was, the doctor even asked me what the mark was on his head! Then, after months of preparation for a life changing op they sent us home without doing it (which is good of course) - but the whole process didn't fill me with confidence.

Fran --- On Wed, 21/5/08, Tim Wilkins <thewilkins@...

From: Tim Wilkins <thewilkins@...
Subject: [sturge-weber] Disability living Allowance awards

I hope no one minds me asking but I was wondering if many of you
received DLA and how long your awards are for?
Luke has always had either 3 or 4 year awards, but I seem to be
surrounded by people who have either 10 year or lifetime awards.
My friend regularly takes her son on holiday and when she is at work
he goes with her and does a bit of filing or photocopying and she has
a 10 year award at the higher rate. I do have the higher rate, but as
I said only for 4 years. We cant even go out for the day let alone on
holiday and I am having to give my job up because I can no longer work
the holidays or get someone to care for Luke.
I just rang the patronising people at the DLA office and they said to
put it in writing, but to be aware I could lose my award all
together. After my normal beating from Luke that I get every morning,
my reply to her wasn't polite.
Hope everyone is well and your little ones
Katie, how is Sophie?
Shelley x

Hi Jonathan and Katie
when Alex was on phenytoin, the neurologist decided his levels were
too high (without first doing a blood test) and told us to miss some
doses (can't remember how many it was long time ago). It ended with
Alex being rushed into hospital in an ambulance and in status. It
took a long long time to bring him around and it turned out it was
due to stopping the medication, the symptoms he was experiencing were
due to low levels not high. Phenytoin ilevels are notoriously hard to
keep balanced. He didn't suffer any after effects though if that's
any consolation. Hang on in there, we are all rooting for you.
Take care
Lynn X

Hi Katie
I can imagine how worried you are, but maybe Sophie is suffering a
withdrawal from the Phenytoin. If her doses have been so high and
then to nothing that must be a shock to her little system.
My son had a hemi and was seizure free for 4 years, although looking
at old video's I think he did have them but we didn't recognise them
as they were so different to the pre hemi ones. After 4 years they
came back and I was devastated. However, on the bright side they were
never as bad and the awful drop seizures didn't come back and I thank
my lucky stars for that every day. He has continued to make progress
and he copes with his epislepsy as he calls it really well.
Please don't panic yet, let her adjust and see where you are in a
couple of weeks.
Do you mind me asking why she is on Phenytoin, that seems a really
unusual medication these days?
Take care my thoughts are with you
Shelley xx

Hi All,
Just a quick question, my daughter Sophie had a hemispherectomy at
the end of February this year at GOSH.
Two weeks ago she developed symptoms which doctors put down to a
viral related symptom.
They did a CT scan to rule out hydrocephalus which did not show any
abnormality and after are third visit to the hospital they did a
blood test which showed her phenytoin levels were toxic.
Our paediatrician advised to take 24 hrs off the phenytoin and
resume as of today at a far lower levels as the toxicity was so high.
This evening Sophie started having seizures again (4 so far,
stiffening of the body and breathing becoming erratic).
As anyone experienced seizures after hemispherectomy and what
happened after please?
Take Care
Katie x

Hello Timothy and welcome to the group. Can you tell me a bit about
yourself, for instance where you are from and what your interests are?
Thanks
Lynn

Hello My Name is Timothy Dickey. I am 18 years old. Although I do not
have SWF, I do have KTS. I saw a link to this group in Branching OUt
and decided to join it looking for possible answers and pen pals.

Hi everyone
I hope Sophie feeling better now. Georgina do you have a community
nursing team ? Only we were seen once by them after a stay in hospital
and told if we needed anything like that to get in touch and they
brought us a large bag of them. Might be worth a try.
Hope everyone else is good.
Angela x x Benjamin's mum.

Hi everyone
I'm struggling to get hold of the BAXA 5ml syringes. my chemist has
started to stock a cheapo version that i'm not happy with & despite
their best efforts haven't been able to get hold of the BAXA ones.
Any ideas?
Georgina, mum to Nathan, 4!

hoi jacqlien
zomaar een vraag las dat je uit drenthe komt mag ikook weten waar??Ik woon in
Emmen vandaar mijn nieuwsgierigheid
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

Hannah had chicken pox when she was 2 and on aspirin therapy. No one told me there was anything to be concerned about or that any vaccination actually exists!

Seemed to be fine thankfully!

Donna

Archibald Photography Ltd

t: 0845 230 5155

m: 07949 532205

e: info@...

w: www.archibaldphotography.co.uk

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Hi Katie & Jonathan,
I'm sorry to hear Sophie has not been well this week. I think
lethargy and vomiting really need to be checked out, it might be just
a bug but if you are at all suspicious of Sophie's behaviour it's
best to get a professional opinion.
I don't know much about calcification. There was 'some calcification
of the left hemisphere' showing in an MRI of Max's brain before his
left hemispherectomy but as nobody has mentioned it since I haven't
tried to find out much about it.
I know calcification of the brain is quite common in SWS but I don't
know when it starts becoming a problem, or whether calcification in
the disconnected side of the brain after hemispherectomy is important
or not, I don't know which side hemi Sophie had).
I really hope Sophie feels better soon, do let us know how you get on,
Antonia (in Devon, Max's mum, 5yrs, hemi'04)

Hi
Regards to chicken pox my eldest son has it at the moment. The doctor wasn't interested in my eldest just said calpol and pirateze. However he was very concerned about Miles although he has had the chicken pox vaccine and gave him some thing called Aciclovir tablets which boots his immune system. Rachael

Hi All,
Sophie has just had a CT scan today at hospital as instructed by
Great Ormond Street to rule out hydrocephalus.
Although they have found no extreme fluid build up in the ventricles
they have put on the CT report that the left hemisphere is extremely
calcified.
Is this normal following a hemispherectomy?
Sophie had her hemispherectomy at the end of February and has been
well up until last week when she started to become irratable,
generally more sleeply and has started vomiting today, could this
have anything to do with the calcification?
Any help and advice would be much appreciated.
Thanks
Katie and Jonathan

Did she have a full or partial hemispherectomy? I am not sure about
the calcification, but that does sound like pressure build up. I
would ring GOSH tomorrow morning and speak to a consultant. Of course
if could just be she is going down with a tummy bug or something.
Shelley

Yes Angela-we'll sponsor you, just let us know where to send the
money!
Good Luck
Trish x

Angela,

Good to hear from you - it's been a while. Of course we'll sponsor you, just let me know where to send the money to. I really admire you for doing this...good luck.

Glad to hear Ben is doing so well. Thanks to everyone for your input on the laser issue, we will go ahead with the six week appointment of course - I just needed some reassurance!

Fran x
angela <angelapitt@...

Hi everyone
Just thought i would let you all know i am doing a sponsored bike ride
on the 22nd may from my house in Leigh,Lancs to Cowdenbeath which is
past Edinburgh total of 260 miles over 3 days for the sturge weber
foundation uk. Would anybody like to sponsor me ?
Fran i was told 3 months between laser at booth hall where we go and it
has always been longer between for us as Benjamin normally gets ill as
we are due.
Benjamin is doing brill at the moment and we are just so proud of him
fighting back and showing the doctors they are not always right, His
sight is returning and he is reaching out to touch things and likes to
slap mum one :-) He has a standing frame now so i getting there and
hopefully one day he will be running round driving me mad.
hope everyone is well
Angela x x x

Hi Angela,
I'd like to sponsor you for £10. Good luck - you are very brave, are
you really going to cycle all that way? Are you doing it alone, or in
a group? I'd take a bus if I were you!
Does anyone know if SWS UK is sponsoring any research into SWS? There
doesn't seem to be much research into SWS going on here or in the US,
unless I've missed any publications. A friend of mine with a very
rare bone/muscle/calcification condition (FOP) told me researchers in
the US had found the faulty gene causing his condition. I'd just love
to know the cause(s) of SWS.
Anyway, Angela, good luck with the bike ride, let us know how you get
on & where to send a cheque or transfer online,
take care,
Antonia, Max's mum in Devon

Hi Everyone,

First - good news Esther about Seans MRI - what a relief for you. Hope you enjoy your holiday...I'm very jealous! Finn had a routine eye check the other day and his pressures are still normal I'm glad to report.

It was his 6th birthday on Monday. He had a party at the Wacky Warehouse on Sunday (I forgot my camera, doh), then we went out as a family to Pizza Hut on his birthday after school.

I have a quick question for everyone, just to ask what you would do. We recieved another appointment for a laser treatment this morning, but the date will only be six weeks since the last one. I'm sure they know better than me what they're doing - but before I ring to accept it - do you think that is long enough? Has anyone else had any so close together?

Fran

Esther Williams <estherquain@...

Hello Everyone

Sean got his MRI done on Friday. Everything is looking good. No sign of any SWS. As you can imagine we are over the moon. The radiologist seems to think that there would be no need for a follow-up but I know the neurologist said he would have to have another MRI done at 18 months. We have a meeting with the neurologist on the 14th May so we will know more then.

Myself John and the 4 kids are heading to Euro Disney France next Monday for a week. The kids are on a mid-term break from school. I'm really looking forward to the break away. Its Seans first holiday. I'll take a few snaps of him with Mickey Mouse and post them up.

We have come along way since last July. Very little hope was given to us when Sean was born. One doctor told us that Seans quality of life would be zero. This couldn't be further from the truth. He is a very happy little boy. I know he has quite a journey ahead of him but there is great hope for him.
Talk soon

Esther (Dublin)
Mum to Sean (extensive PWS, glaucoma).

Hi Shelley
I have spoken to the 'boys' and they have decided not to watch their
team next week as they are less than impressed with them! Sorry to
mess you about, maybe we can do it next season?
Lynn X

Hello Everyone

Sean got his MRI done on Friday. Everything is looking good. No sign of any SWS. As you can imagine we are over the moon. The radiologist seems to think that there would be no need for a follow-up but I know the neurologist said he would have to have another MRI done at 18 months. We have a meeting with the neurologist on the 14th May so we will know more then.

Myself John and the 4 kids are heading to Euro Disney France next Monday for a week. The kids are on a mid-term break from school. I'm really looking forward to the break away. Its Seans first holiday. I'll take a few snaps of him with Mickey Mouse and post them up.

We have come along way since last July. Very little hope was given to us when Sean was born. One doctor told us that Seans quality of life would be zero. This couldn't be further from the truth. He is a very happy little boy. I know he has quite a journey ahead of him but there is great hope for him.

Talk soon

Esther (Dublin)

Mum to Sean (extensive PWS, glaucoma).

Hi Lynn
Are you still coming down next weekend?
Shelley x

Hi Rachael,

I don't know if it's a similar thing or not, not having seen Miles, but going on my personal experience I wonder if it is similar to what Finlay used to have. Don't forget, this is just our experience, and it could have nothing to do with Miles' 'shocks' - we call them drops (as in drop attack) but a more accurate name is probably myoclonic jerk. It is just a split second when the brains impulses misfire, but it is a form of epilepsy.

Finn had this for quite a long time, and unfortunately injured his poor face all the time falling forward...he wore a helmet for a while but it didn't really help. He always seemed to land on exactly the same spot on his forehead! It got so bad that he was put forward for a hemispherectomy as the drugs weren't helping. His main meddie is carbamazepine (currently 12 and a half mls twice a day)...we tried others with it to control the drops (topamax and keppra) but nothing worked. I can't remember how long it went on for but at least two years...then an amazing thing happened - he caught chicken pox! After a week of horrible big seizures everything stopped! No more drops! We went all of last summer with no seizure activity at all and his development took off like a rocket. It was heaven not to have to constantly worry about him falling or injuring himself and they cancelled his op the day before it was due as he was so well. Now he has one very rarely, usually just as he's
falling asleep.

I hope this isn't what Miles is having, but I work on the theory that any information could be useful. When Finn had his they varied in length, but often his head would just nod and at the same time one arm would jerk upwards. By the way, he is now on a drug called Vigabatrin. I thought his symptoms would always be like that, but it just goes to show that with Sturge-Weber things can and do change constantly and usually when you least expect it,

Fran

Hi Everyone, Just wanted to ask a question, lately Miles looks like he
keeps getting little electric shocks, has anyone every come across this
and could it be epilepsy related or am I being paraniod. Also I was
wondering if all of you whose children are on Carbemazapine do you know
what is classed as a high dose I keep being told Miles in on a low
dosage which is 8ml twice a day but I have nothing to comapre it to and
it has increaded from 2mls to 8mls in a year, which seems quite alot to
me.

Hi all
thanks for the birthday wishes for Chloe and Alex. We had a family get
together last night, I will post some photos later.
Lynn

Hope you both have a fantastic day
All our love
TIm Shelley and Luke xxx

Happy 21st to Alex and Chloe
Congratulations and lots of love
Trish Ron and Claire xx

Happy Borthday Alex & Chloe - hope you guys have the best day ever from
Ingrid, Mike Danny & Rory xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Hi Ingrid
I thought I had replied last night but I cant find it so maybe I
didn't. The reason I asked about hemiplegia is because when we went
to a hemi-help conference the behaviours they talked about sound very
like Danny. Are you a member of hemi-help?
Luke also does that deciding in his head what is going to happen and
then not being able to cope when it doesn't.
He has quite autistic tendencies in some areas, but in other things he
is very sociable. I think you are doing the right thing asking for a
psychological assessment.
I completely understand how difficult the behaviour problems are
Shelley

You're not a bad mother. You didn't apply for this job and you do it
the best you can. That is my mantra
Shelley x

Ingrid,
it took a long long time to get Alex to use the toiet properly. It
makes sense what you say about the hemi making it difficult but no-
one told us that at the time. No-one told us about the birthmark
thickening either, it was only when it happened to Clare (Trish) that
we knew anything about it.
You all have so much more information these days than we did which is
something I am pleased about.
Lynn

Hi Ingrid
I'm glad Mike made it home, it must be a huge relief to you and I'm
sure the boys will be thrilled. I'm sure we will be going to the
beach again soon now that the weather is 'improving', I will let you
kno.
Take care
Lynn

Hi Shelley
Yes Danny does have left hemiplegia - his arm is much more severely
affected than his leg. He can walk although not very far and with a
limp which is sometimes less obvious and other times very obvious. He
wears licra splints on his arm and leg and piedro boots also, or when
he's being trendy he wears other supportive to his ankle footwear. He
also suffers from a lazy bowel due to the hempliegia and therefor has
to have powders to help with this. This is also a physical reason why
he is still in nappies becuase it doesnt feel the same to him - he is
confused about whether he is wet or dry or soiled etc.... he cant tell,
and the sensation of "going" isnt controlled with him - ie he would sit
down in the middle of the street sometimes to go.... his left arm is
used to slot items underneath to carry - his hand has no control and is
really quite useless to him... we do lots of physio excercises and
swimming as his arm is smaller and shorter than his right one...
Ingrid

No, they are 21 on the 21st April. They don't want a party so we are just having family round on the 20th. Feel free to join us but we don't meet the standards of the DDA!

Hi Lynn
I am free on the 3rd of May so it would be lovely to see you. Let me
know what you want to do? Will you have the car or shall I come over
and pick you up or could Col drop you off?
Hi to all, bit busy as it school holidays here and what with that and
working internet time is severely restricted
Shelley x

Lynn-we haven't missed Alex's and Chloe's 21st have we????

That doesn't surprise me-I could tell she'd been up to tricks when she
got home, she doesn't like that support worker but we don't have much
choice at the moment!
Yes we are having a party for Claire's 30th on June 14th-if anyone
wants to come just let me know and I'll post the details (or maybe not-
might end up with a "Skins" type invasion!)
Lynn-it would be lovely to see Alison again, I'll ring you
Trish

Hi Trish
we saw Clare in town today...left arm up by her ear! Alison sends her
best wishes and said she would love to come to Clare's party if you are
having one.
Sorry I haven't been round yet, Col's dad is still taking up most of
our time and we have both been ill. We are planning a week in Spain at
a friend's house in May to recharge our batteries.
I have to say, caring for a disabled child is so much easier than
caring for an adult with alzheimers...count your blessings!
Take care
Lynn X

Hello everyone,

Just a quick update on Finlay as he is doing so well...we had his first statement review recently at school, and everyone is aggreed that his is doing very well in all areas, so we are going to start some integration sessions at mainstream starting on Monday. This is mainly for social reasons, to give him the chance to mix with more vocal children and hopefully make some friendships, which is the only thing at his special school which is difficult. I still feel special school is the best place for him and do not want him to leave, but this way we get the best of both. Of course, he will be supported one-to-one while he is there - I just hope he enjoys it!

Next week he also has another laser session lined up (number 10). He has told me in no uncertain terms that he wants daddy to take him and I can stay at home! Where has my baby gone?! He had a seizure in the car on the way home after the last one, but I will try not to worry about not being there and hope everything goes smoothly.

Also, just a reminder for families with young babies that might not have come accross this before, but you can get sunblock for PWS on prescription so you don't need to buy it.

How is everyone else doing? We haven't heard much from many of you lately - don't forget to let us all know how you are getting on.

Fran
Donna Marshall <forgecottage@...

Oh, I also meant to add that we have had a huge dilemma about doing laser treatment. To us, Hannah is Hannah and the only reason to try and remove her birthmark would be to try and change her for other peoples benefit. The only reason we decided to go for it was that I was told that it would stop her birthmark thickening and it has really smoothed her skin on her birthmark.
But going for the treatments was a hard one and when she wakes up sore, I feel terrible! I have never said to anyone (Hannah especially) that she had laser to try and remove her birthmark, I have only said it is to keep her skin nice and smooth.
My rant for the evening!
Donna
Archibald Photography Ltd
t: 0845 230 5155
m: 07949 532205
e: info@archibaldphotography.co.uk
w: www.archibaldphotography.co.uk
CONFIDENTIALITY AND DISCLAIMER NOTICE
This e-mail and its attachments are intended for the above named recipient only and may be confidential. If you are not the named addressee, you are not authorised to retain, read, copy or disseminate this message or any part of it. If you receive this transmission in error, please notify us immediately at info@archibaldphotographyco.uk and then delete this e-mail. As Internet communications are not secure we do not accept legal responsibility for the contents of this message nor responsibility for any change made to this message after the original sender sent it. The contents or opinions contained within this e-mail are solely those of the sender and do not necessarily represent those of Archibald Photography Ltd unless otherwise specifically stated. We advise you to carry out your own virus check before opening any attachment as we cannot accept liability for any damage sustained as a result of any software viruses.

Oh, I also meant to add that we have had a huge dilemma about doing laser treatment. To us, Hannah is Hannah and the only reason to try and remove her birthmark would be to try and change her for other people's benefit. The only reason we decided to go for it was that I was told that it would stop her birthmark thickening and it has really smoothed her skin on her birthmark.

But going for the treatments was a hard one and when she wakes up sore, I feel terrible! I have never said to anyone (Hannah especially) that she had laser to try and remove her birthmark, I have only said it is to keep her skin nice and smooth.

My rant for the evening!

Donna

Archibald Photography Ltd

t: 0845 230 5155

m: 07949 532205

e: info@...

w: www.archibaldphotography.co.uk

CONFIDENTIALITY AND DISCLAIMER NOTICE
This e-mail and its attachments are intended for the above named recipient only and may be confidential. If you are not the named addressee, you are not authorised to retain, read, copy or disseminate this message or any part of it. If you receive this transmission in error, please notify us immediately at info@... and then delete this e-mail. As Internet communications are not secure we do not accept legal responsibility for the contents of this message nor responsibility for any change made to this message after the original sender sent it. The contents or opinions contained within this e-mail are solely those of the sender and do not necessarily represent those of Archibald Photography Ltd unless otherwise specifically stated. We advise you to carry out your own virus check before opening any attachment as we cannot accept liability for any damage sustained as a result of any software viruses.

Hi All
Glad Donna is enjoying her swimming lessons. Danny also LOVES swimming -
and has been having lessons for over a year now which he lovews - he
does them one-2-one with a disabled swim instructor but he isnt scared
of her and so messes about a lot too!! He does have loads of fun and
his confidence in the water is greatly improved. It always has to be on
Dannys terms though!!!!
For Esther - I think the little UV swim suits are a great buy for
babies in the summer and they look SOOOOO cute in them. Danny had one
and Rory now wears it!!! It was a t-shirt, shorts and a cap in special
UV resistant swimwear material so really practical outdoors and
indoors - and they also keep a little warmer than in trunks!!!
Danny now has a proper mini shorts wetsuit for his lessons as he gets
really cold quickly and still wont get out of the water even when he is
blue!!!!!!! So this keeps him warm.....

Very well put Donna!

I also debated whether to put Jacob in one of those UV suits the first time I took him but decided against it for exactly the same reasons, I didn't want to give the message to my other 2 children that he should be covered up. I think he is gorgeous and if someone else doesn't like looking at him then that's their problem! But being realistic, it does depend how you are feeling, some days you can cope and other days you don't feel as strong. You need to do what's right for you and Sean.

Jacob attends swimming lessons now with just a pair of skimpy trunks on and it doesn't bother him, although he does go very purple with the cold and his toes go almost black! I also sit on the side watching, but luckily haven't had to jump in. It was an alternative to paying for 1-2-1 lessons.

Donna, Hannah looks like she means business in those fab pink goggles, brillaint results on her neck. Jacob had his neck done in Feb and that's also got good results, you can see the dots really clearly.

Christine

Hi Ingrid

Yes my neurologist has told me not to get too worked up if something is found. It may have little or no effect on him. Like you say treating the child not the scan. I havn't come across a Dr. O'Brien yet. I'd say the name your looking for is Donnacha (Dun-a-ka). I'll keep the name on file.

Thanks for your support Ingrid.

Esther.

On 4/6/08, ingndanny <ing.grimes@...

Hi Esther
I just remembered Dannys neurosurgeon is a Dublin man - he was
working at Alder Hey for a while but has since returned to Dublin -
his name is Doneghar O'Brien. (Dont think I spelt his first name
right!!) He is an amazing man who is very quietly spoken and
extremely perseptive. just thought I'd mention it as you may come
across him at your appointments. By the way - the neurologists we
have been with have treated the child not the scan. Danny had an EEG
just before his hemi-op but it was pretty irrelevant as he was having
lots of seizures anyway and we had allready decided to go ahead with
surgery - but the neuro just wanted to check for the subclinical ones
he thought dan was having when he's asleep.
I also thought I would mention that seizures arent a given with this
condition - I knew of a girl who was over 30 years old with SWS, and
had extensive PWS all over her body - but no seizures... I don't
think the two go hand in hand necessarily - my husband and I were
shocked becuase Dannys PWS is only his face and head and yet his
seizures were off the scale at times. Thats the nature of this
condition isnt it - that everyones experiences are similar but all
the parts which come under the umbrella SWS can be variant in each
person. Like you said take it as it comes and keep positive. Hope I
can help in some small way. Take care

Couldn't have put it better myself!

Hi Esther
I just read your reply - thanks... sorry to go on and on and on !! ha
ha!! Danny does LOVE Rory they are like a pair of peas in a pod -
proper little boys - into everything and always up to something they
shouldnt be!!!!!! one minute arguing and the next cuddling and sharing -
just wanted to say Best of Luck on Thursday - let us know how Sean
gets on. ingrid

Hi Ingrid

Great to hear from you. I have seen Dannys pics, he looks wonderful. The laser seems to be taking good effect. Its great he is seizure free for this length of time and the hemi. has been so successful. I will let ye know how Thursday goes. Please God the news will be good.

I hope things keep going great for Danny and that he takes good care of his beautiful brother Rory.

Esther.

On 4/6/08, ingndanny <ing.grimes@...

Hi Esther
I'm Ingrid, mum to Danny aged 6 who has SWS, left hemiplegia ,
Glaucoma, Epilepsy - seizure free since Hemispherectomy Feb 06 and
learning difficulties - and Rory, who is 17 months. They warned me
about SWS when Danny was born and he had to see a paediactrician
weekly from then - they advised us that MRI scans are only clear
after 6 months so he had his first then - but had allready started
fitting at 9 weeks, and was put on anticonvulsants then. Like
yourselves they wouldnt start laser to his borthmark until they had
confirmed what was going on inside his head first. Danny only started
his laser to his face following his hemi op and subsequent godd
recovery. I suppose really beacuse his fits were very unpredictable
and quite uncontrollable at times we needed to just concentrate on
them first, he had enough going on. They used to do his glaucoma
checks at the same time as his laser but now he is great at his
glaucoma checks whilst awake in clinic so we only have the
anaesthetics for the laser at present. Danny is treated for
everything at Alder Hey in Liverpool.
Welcome to the group, I have seen your family photies and little Sean
is gorgeous - he looks a lovely happy little boy, and is very lucky
to have big brothers and sisters to help him through and look out for
him. Good luck with his next MRI, like you we all take every day at a
time and deal with things as they come up, and hope for the best.
take good care. Ingrid x

Hi Esther
I just remembered Dannys neurosurgeon is a Dublin man - he was
working at Alder Hey for a while but has since returned to Dublin -
his name is Doneghar O'Brien. (Dont think I spelt his first name
right!!) He is an amazing man who is very quietly spoken and
extremely perseptive. just thought I'd mention it as you may come
across him at your appointments. By the way - the neurologists we
have been with have treated the child not the scan. Danny had an EEG
just before his hemi-op but it was pretty irrelevant as he was having
lots of seizures anyway and we had allready decided to go ahead with
surgery - but the neuro just wanted to check for the subclinical ones
he thought dan was having when he's asleep.
I also thought I would mention that seizures arent a given with this
condition - I knew of a girl who was over 30 years old with SWS, and
had extensive PWS all over her body - but no seizures... I don't
think the two go hand in hand necessarily - my husband and I were
shocked becuase Dannys PWS is only his face and head and yet his
seizures were off the scale at times. Thats the nature of this
condition isnt it - that everyones experiences are similar but all
the parts which come under the umbrella SWS can be variant in each
person. Like you said take it as it comes and keep positive. Hope I
can help in some small way. Take care

Hi Esther
I'm Ingrid, mum to Danny aged 6 who has SWS, left hemiplegia ,
Glaucoma, Epilepsy - seizure free since Hemispherectomy Feb 06 and
learning difficulties - and Rory, who is 17 months. They warned me
about SWS when Danny was born and he had to see a paediactrician
weekly from then - they advised us that MRI scans are only clear
after 6 months so he had his first then - but had allready started
fitting at 9 weeks, and was put on anticonvulsants then. Like
yourselves they wouldnt start laser to his borthmark until they had
confirmed what was going on inside his head first. Danny only started
his laser to his face following his hemi op and subsequent godd
recovery. I suppose really beacuse his fits were very unpredictable
and quite uncontrollable at times we needed to just concentrate on
them first, he had enough going on. They used to do his glaucoma
checks at the same time as his laser but now he is great at his
glaucoma checks whilst awake in clinic so we only have the
anaesthetics for the laser at present. Danny is treated for
everything at Alder Hey in Liverpool.
Welcome to the group, I have seen your family photies and little Sean
is gorgeous - he looks a lovely happy little boy, and is very lucky
to have big brothers and sisters to help him through and look out for
him. Good luck with his next MRI, like you we all take every day at a
time and deal with things as they come up, and hope for the best.
take good care. Ingrid x

Hi Donna

I was just reading your post to Esther and noticed you talked about the dental surgeon doing an examination when Hannah is under anaesthetic. Jacob also has PWS on his gums and under his tongue and I have noticed over the last 12 months or so that his left side seems to be growing 'down' if that makes sense. When he smiles his teeth are no longer in a straight line.

I have mentioned this to his current dentist (and the previous one) neither of whom aren't concerned, but I wondered if we should be doing anything about it. He has just lost his first baby tooth at the bottom, it was very stubborn and took a while to come out, in fact Jacob ended up snapping it out. I left Jacob £1 ifor this but he seemed to think he should receive a large toy in exchange!!

Any advice you can give on this would be welcome.

Thanks

Christine

Esther.

Your photos are lovely, you have a beautiful family. How do you pronounce Eibhlin?

Fran
Esther Williams <estherquain@...

Hi Everyone

Just to let you know I posted some pics. of Sean in the gallery. Hope you enjoy them.

LOL

Esther (Dublin).

Hi Esther

Welcome to the group. I'm Christine Mum to Jacob, age 7 in July. He has PWS to his face (bi-lateral), neck, back, bottom, legs and feet, it's easier to say where he doesn't have it! He also has Glaucoma and seizures. His first seizure that we noticed was around 15 months, although he could have had them before then and we didn't realise. He has had laser surgery for the glaucoma (at Manchester) and 8 laser treatments on his face at Great Ormond Street. We noticed a great improvement with the first few, then the improvement became more subtle. They are just concentrating on his face, I think the other areas are too large to treat. His first treatment was at 18 months. Dr Syed and Sister Jane Linward are great at GOSH.

We also attend the Sturge Weber Clinic at GOSH but attend Manchester eye hospital for the Glaucoma. He also sees a local paediatrician every 4 months. When Jacob has laser they also examine his eyes, which has been useful. It has meant he has only had to have a General anesthetic 3 times at Manchester. He is superb now at sitting still for his pressures. We also had lots of problems wearing his glasses, but he is not too bad now, although we still struggle with his patch.

The group is great for answering questions and support as someone usually has experience of what you are going through. Sean's pictures are lovely!

Christine

Hi Everyone

Just to let you know I posted some pics. of Sean in the gallery. Hope you enjoy them.

LOL

Esther (Dublin).

Hi Fran

Thanks for getting back to me. I must say the thoughts of a GA every time he gets laser is a worry. He also gets GA periodically for eye exams. The last time he got it done he didn't react too well to it and we ended up staying a week in hospital rather than the 2 days we were supposed to. Then again he was only 4 months old so hopefully it will be different next time. He is going for an MRI next Thursday and he will get sedated by mouth. So I'm a little apprehensive about that but once we get the right result I won't mind!!. I'll let ye know how I get on.

Esther.

On 4/4/08, fran bates <batesfran@...

Hi Esther,

Welcome to the group, I hope you find it useful - its a great place for advice and support when you need it.

My son is nearly 6, and was diagnosed with SWS when his seizures started at 12 months.
His PWS is only on his eyelid, forehead and back over his scalp. He has has 9 laser treatments to date, with another due in a couple of weeks. We go to Birmingham in the West Midlands for Finlays treatments with a dermotologist called Sean Lanagan, It has responded well, and we had a break of 2 years but it did start to darken again...so it seems that the treatments are a lifetime commitment but well worth it. By the way, we started at 8 months old and he always has a GA. I have no personal experience of KT I'm afraid. For what its worth, I think you are absolutely doing the right thing looking around for treatment...it is what I would have done for Finlay. We have been very fortunate with our dermatologist, and even though his SWS has been managed adequately, we are still looking to change his care to Great Ormond Street.

Good luck with your search, and don't forget to keep us all posted on Seans progress!

Fran in Shropshire

Hi Everyone
My name is Esther (Dublin, Ireland) and I have an 8 month old son
Sean. Sean has an extensive PWS covering 75% of his face and body.
Glaucoma in his right eye (operated on at 3 weeks). I suspect he
has KT. He was never diagnosed with it but his right arm is fatter
than the left (no length difference). He can use it the same as the
other arm so medical people aren't too concerned about it yet. His
neurologist is very pleased with him MRI and EGG clear so far and
reaching his mile stones and experiencing no seizures.
He is a very happy little boy. Very good humoured and relaxed in
himself. He loves his 2 older sisters and big brother. I did alot
of crying when Sean was born but he brings a smile to my face every
day now. He truly is wonderful.
I would love to hear what the treatments are like in the UK. I am
very pleased with the Optamology here but would love to hear about
Laser and KT treatments. I know in the USA they seem to start laser
very young and cover alot of the body. Here it starts at 1.5 years
old and only the face and maybe the hands will be done. Any info.
would be great
Look forward to hearing from you
Esther (Dublin, Ireland).

Hi Emma

Would love to meet up any time your over. I'm from Limerick originally and have a house down there so I spend a bit of time there. So it might be easier to meet down that neck of the woods. Looks like your treatment for laser is the same as here around a year old mark. Its great to hear how successful it can be. Sean will be looked at by Derm. in September and then booked in after that. But he is in the system so hopefully there won't be much of a delay.

Great to hear from you Emma. All the best with Alex.

Esther.

On 4/4/08, Emma Wright <emma@...

Hi Esther,

My son Alex is 14 months old and has just had a patch test done for laser treatment (PWS on right side of face and a little area on scalp) and is booked in for full treatment in September (the next available appointment the waiting list for the theatre is long!). His treatment was delayed because his referral didn't happen until seizures were under control, and then the letter got lost (twice!) so I think the process would have started four months ago if all had gone smoothly. The patch on his scalp and anything under the hairline will not be treated. We've randomly met two children at GOSH who had extensive facial PWS, with no SWS, and both of them have had 8-9 treatments by the age of 4 or 5. In both cases we only knew they had had PWS because of the slight swelling in the area it does seem that in many instances the area is bigger than the rest of the body, presumably because of the extra blood.

We live just outside London, so travel up to GOSH every three months for opthamology (glaucoma currently under control), every six months for development assessment, and frequently go up in between for random appointments like dermatology or EEGs. On top of that, we are very fortunate that a consultant at our local hospital has a special interest in complex epilepsy and has been involved in about 20 SWS cases before Alex.

I feel a bit guilty because I am from Ireland and was over a couple of weeks ago to visit my parents. I had meant to get in touch with you before I went but as it happens we were far too busy introducing Alex to all the relatives to make a trip to Dublin from Clonmel! Would you be interested in meeting up whenever we are next over? And where do the other SWS family live?

Looking forward to seeing piccies of Sean!

Emma

Hi Esther,

My son Alex is 14 months old and has just had a patch test done for laser treatment (PWS on right side of face and a little area on scalp) and is booked in for full treatment in September (the next available appointment - the waiting list for the theatre is long!). His treatment was delayed because his referral didn't happen until seizures were under control, and then the letter got lost (twice!) so I think the process would have started four months ago if all had gone smoothly. The patch on his scalp and anything under the hairline will not be treated. We've randomly met two children at GOSH who had extensive facial PWS, with no SWS, and both of them have had 8-9 treatments by the age of 4 or 5. In both cases we only knew they had had PWS because of the slight swelling in the area - it does seem that in many instances the area is bigger than the rest of the body, presumably because of the extra blood.

We live just outside London, so travel up to GOSH every three months for opthamology (glaucoma currently under control), every six months for development assessment, and frequently go up in between for random appointments like dermatology or EEGs. On top of that, we are very fortunate that a consultant at our local hospital has a special interest in complex epilepsy and has been involved in about 20 SWS cases before Alex.

I feel a bit guilty because I am from Ireland and was over a couple of weeks ago to visit my parents. I had meant to get in touch with you before I went but as it happens we were far too busy introducing Alex to all the relatives to make a trip to Dublin from Clonmel! Would you be interested in meeting up whenever we are next over? And where do the other SWS family live?

Looking forward to seeing piccies of Sean!

Emma

Hi Esther,

Welcome to the group, I hope you find it useful - its a great place for advice and support when you need it.

My son is nearly 6, and was diagnosed with SWS when his seizures started at 12 months.

His PWS is only on his eyelid, forehead and back over his scalp. He has has 9 laser treatments to date, with another due in a couple of weeks. We go to Birmingham in the West Midlands for Finlays treatments with a dermotologist called Sean Lanagan, It has responded well, and we had a break of 2 years but it did start to darken again...so it seems that the treatments are a lifetime commitment but well worth it. By the way, we started at 8 months old and he always has a GA. I have no personal experience of KT I'm afraid. For what its worth, I think you are absolutely doing the right thing looking around for treatment...it is what I would have done for Finlay. We have been very fortunate with our dermatologist, and even though his SWS has been managed adequately, we are still looking to change his care to Great Ormond Street.

Good luck with your search, and don't forget to keep us all posted on Seans progress!

Fran in Shropshire

Hi Everyone
My name is Esther (Dublin, Ireland) and I have an 8 month old son
Sean. Sean has an extensive PWS covering 75% of his face and body.
Glaucoma in his right eye (operated on at 3 weeks). I suspect he
has KT. He was never diagnosed with it but his right arm is fatter
than the left (no length difference). He can use it the same as the
other arm so medical people aren't too concerned about it yet. His
neurologist is very pleased with him MRI and EGG clear so far and
reaching his mile stones and experiencing no seizures.
He is a very happy little boy. Very good humoured and relaxed in
himself. He loves his 2 older sisters and big brother. I did alot
of crying when Sean was born but he brings a smile to my face every
day now. He truly is wonderful.
I would love to hear what the treatments are like in the UK. I am
very pleased with the Optamology here but would love to hear about
Laser and KT treatments. I know in the USA they seem to start laser
very young and cover alot of the body. Here it starts at 1.5 years
old and only the face and maybe the hands will be done. Any info.
would be great
Look forward to hearing from you
Esther (Dublin, Ireland).

Hi Esther

Welcome! Glad you managed to find this site after I emailed you.

Hi Esther
welcome to the group, my son is 20 so I am not as up to date on
treatments as some others. There are many people on here with young
children so I am sure people will be able to offer help and advice.
Are you in contact with any other SWS families in Ireland?
Lynn

Hi Everyone
My name is Esther (Dublin, Ireland) and I have an 8 month old son
Sean. Sean has an extensive PWS covering 75% of his face and body.
Glaucoma in his right eye (operated on at 3 weeks). I suspect he
has KT. He was never diagnosed with it but his right arm is fatter
than the left (no length difference). He can use it the same as the
other arm so medical people aren't too concerned about it yet. His
neurologist is very pleased with him MRI and EGG clear so far and
reaching his mile stones and experiencing no seizures.
He is a very happy little boy. Very good humoured and relaxed in
himself. He loves his 2 older sisters and big brother. I did alot
of crying when Sean was born but he brings a smile to my face every
day now. He truly is wonderful.
I would love to hear what the treatments are like in the UK. I am
very pleased with the Optamology here but would love to hear about
Laser and KT treatments. I know in the USA they seem to start laser
very young and cover alot of the body. Here it starts at 1.5 years
old and only the face and maybe the hands will be done. Any info.
would be great
Look forward to hearing from you
Esther (Dublin, Ireland).

Hope everyone has a lovely Easter (and the weather improves by the
weekend!)
Trish x

Hey, its lovely up here in Scotland!
Donna

Hi there,
keep your eye on this link, who knows, someone might be able to come up
with an answer one day:
http://bigquestion.wordpress.com/?s=sturge-weber+syndrome
Have a good Easter every one,
Antonia

Hi

Just wanted to say glad you are both home and hope you are also feeling better Katie. What a dreadful ordeal you have all been through. Hope things start to get back to normal family life soon for you. We are thinking of you all.

Take care,

Christine and Jacob x

Crikey that seems quick, how many days was she in for? Glad to hear
she is improving. Keep us posted.
Shelley x

Hi Jonathan
it's fantastic that Sophie is home, Alex was in for 3 weeks after
surgery. The day he was due home he began vomiting and did so for a
while afterwards.
I hope both Sophie and Katie continue to improve and your life can get
back to some sort of normality.
Take care
Lynn X

Hi Jonathen - thanks for the update. I just wanted to send you all a
message of support - what a dreadful turn of events Katie has had, I'm
sure she is terribly anxious not being there at GOS with you and
Sophie. I also wanted to tell you that Danny had two black eyes post
hemispherectomy, so that is completely normal. He also got a high temp
and vomiting because there was small amounts of blood in the brain and
it told the body to fight infection... Danny was very quiet and sleepy
also just naturally trying to recover. It is such a mad time for you
all at the moment, I wish you all well, and I will say my prayers for
you that you are all back home together really really soon and
recovering well. Jonathen take good care of yourself - you are so brave
going through all this it WILL get better really soon - and Katie
remember Sophie is in the best hands and you need to rest and get
yourself well for her return home. Take care all of you and god bless.
Ingrid x

Hallo allemaal,
Al een tijdje vraag ik me af of ik hier eens iets over moet gaan posten en
nu doe ik het dan maar...
Voor het ongeluk had ik meestal veel energie en kon ik wel 10 dingen
tegelijk doen. Sinds het ongeluk is er echter volgens mij geen dag
geweest dat ik met een uitgerust gevoel wakker werd. Altijd moe, moe, moe.
En dan geen gewone vermoeidheid die weg te slapen valt, maar "andere"
moeheid.
Op dit moment is die vermoeidheid heel extreem aanwezig, het voelt zo'n
beetje als mijn ergste whiplashklacht van dit moment. De afgelopen week
heb ik me heel erg aan de vermoeidheid overgegeven en heel veel gerust.
Maar nee,...het helpt niet.
Ik ben moe tot op het bot en moet me voor alles wat ik doe activeren zeg
maar. Lastig, want in mijn hoofd heb ik zin om heel veel dingen te
ondernemen.
Andere mensen merken het niet aan me, hier in het gezin valt het des
te meer op... Ik zeg af en toe:"Ik heb me nog nooit zó moe gevoeld."
maar die uitspraak doe ik al sinds het ongeval al regelmatig (bijna
6,5 jr geleden). Ik sta op het punt om mijn bloed te laten prikken om
uit te sluiten dat er verder lichamelijk niks is.
Maar eerst hier eens vragen: wie herkent dit? Is dit heel extreem? Wie
heeft tips voor me? Ik zou zo graag alles hier thuis iets
gestroomlijnder willen laten draaien. In mijn hoofd de activiteiten
bedenken (lukt goed, met enthousiasme zelfs) en dan lichamelijk ook
in staat zijn de activiteiten ten uitvoer te brengen.
Moet ik me hier uitvoerig aan overgeven of moet ik er doorheen breken
en juist actief worden/blijven? Ik weet het even niet meer en dat
gebeurt me niet vaak :-)))
Oh ja, aan het weer ligt het niet, want voor dit mooie weer had ik het ook
al...
Haha, niks voor mij zo'n "klaagverhaal" hier...
groetjes,
Christa
_ _ _ _ _ _ telefoonnummers en adressen voor vragen en hulp _ _ _ _ _ _ _ _
helpdesk medisch/juridisch: 036 - 5386170 Wouter van Eldik
helpdesk persoonlijke steun: 020 - 4270311 Lenie de Vries
helpdesk persoonlijke steun: 079 - 3518438 Gerda van Zijl
helpdesk lijstbeheer: 0485 - 455590 Marjon Vloet

Just wanted to say our thoughts are with you all at this difficult time. Hope Katie is home soon and feeling better.

Christine x

Hiya Shelley
Just to add to Lynn's post- I have also heard good things about the
David Lewis College! Good luck with the respite- my advice (for what
it's worth) is start looking now!
Trish x

Hi Lynn
I have just been sorting through and found this. I think Tim reads
them and then the mailbox moves on and I don't see them.
We have decided not to go for residential this year. Maybe 2009
definitely 2010.
Have found a nice college The David Lewis Centre.
http://www.davidlewis.org.uk/college/background%2Dto%2Dthe%2Dcollege/
see what you think. It is up your way so maybe you know of it already.
I didn't like the vibes I picked up from Lingfield and have a problem
with their huge connection to GOSH. That is just me though.
They were the ones who suggested we hang on as he can stay at his
school for 3 years and then have 3 years with them, so as she said why
cut his education short if you don't need to. School is going so well
that I agree it seems silly.
He has been assessed by the Continuing Health people and will get
funding from them so that helps. My big worry is that his respite
unit only takes until they are 18 so not sure what will happen then.
Oh well head back in the sand for now
Thanks for asking hope all well with you and yours
Shelley xx

Hi Fran
I am sure Katie won't mind me telling everyone this but she has been
in hospital. She had gone repeatedly to her GP complaining of
stomach pains to be told it was stress about what was approaching
with Sophie's surgery. She was eventually admitted to hospital and
when they investigated, she had a severely perforated appendix and a
stomach full of pus. She ended up in ICU with drains etc
I heard from Jonathan a few days ago to say Katie was still in
hospital as her bowel had stopped working for a week after the op.
He was hoping she would get home soon. Sophie had also been admitted
to hospital with seizures and a virus.
I can't imaging what they are going through right now and for Katie,
what terrible timing with everything else. I am sure everyone will
keep them in their thoughts and send telepathic good wishes for them
both to recover from everything soon.
Donna

Katie,

If you are around - did Sophies op go ahead? If so, please let us all know how things are going. I have been thinking of you all.

Fran
jonathan61115 <katieridley1@...

Hi Antonia,
We would love to come to see everyone again.
Sophie is having a hemispherectomy on 28 Feb at GOS so if there is a
get together later in the year we will certainly come.
If you are planning to have it in March we will see you at the next
one.
Hope all is well.
Katie x

I just wanted to say hello to you Sonia and your family and welcome to
the group.
My Name is Rachael and my son Miles is 2 years old. He was diagnosed
with SWS last April when he had his first couple of seizures, He takes
Carbomazapine and asprin. As you can see from my photos Miles is one of
the very few sufferers of SWS that doesnt have a PWS.
As Miles' diagnosis is still quite new I dont really have much advise
to give but I have found this site invaluable, everyone is really kind
and helpfull and there is always someone that will offer a kind ear
when you just want to get things off your chest or advise when you need
it.
Your Photos of Lucas are great and he looks like a really happy
beautiful little boy.

Hi Antonia

Thanks for organising this and for the huge list of dates for us to choose from. I've been through them all and I don't think we will be able to make it this time. My husband is working the weekend of 12\7 and I don't fancy driving down with three arguing children in the back! I know all the other dates are in the school hols but we are just off 2 weeks at the beginning and are going on a family holiday. We both have no more leave left to book time off during the week.

Hope we can see everyone later in the year.

Christine

Hey don't forget me I was '21' last Tuesday!
Lynn X

Ah thanks Fran. Perhaps we should have a birthday board or something?
Happy belated 4th birthdays to Nathan and Hannah
xxxx

Hi all,

I just wanted to wish belated happy birthdays to Luke for last Wednesday, Nathan for yesterday and hannah for last Thursday who were both 4.

Antonia, looking forward to seeing you in 3 weeks, I will be in touch.

Fran

Hello Sonia,

My name is Fran and my little boy is called Finlay , he is now nearly 6 and has Sturge Weber.

I remember like it was yesterday when he had his first lot of seizures, just a few days after his 1st birthday, like you we had put it to the back of our minds - especially when that very day at a check up the doctors had said 'it looks like you are one of the lucky ones'. It sounds a bit cheesy but actually we are one of the lucky ones, because now I can honestly say I wouldn't change anything about Finlay now...yes, there has been a lot of worry and a lot of work and the future is always going to be uncertain but he has brought so much into our lives that we otherwise wouldn't have learned and enjoyed. The next few years for you while he is so young will be tough, a constant round of appointments, but things will get better. You have found a good place for support and to ask any questions - the rest of us aren't doctors but we have yaers of collective experience. I think the others will agree that generally speaking a lot of doctors don't really know that much about
Sturge-Weber, and its often helpful just to compare notes with the others here that have been there and done that. I will have to look up Aperts. What are the chances of having two syndromes like that!?

Anyway, welcome to the group, please keep us updated! There are several families here with babies....where do you live? Luca is a cool name by the way!

Fran in Shropshire
soniajandhyala <soniajandhyala@...

Hi, my name is Sonia. My son Luca is 8mths old, and was diagnosed
at birth with both Apert syndrome (conjoined hands an toes,
premature fusing of bones in the skull), and Sturge Weber.
Not knowing that anything at all was wrong during my pregnancy, it
came as a huge shock when Luca arrived having not one, but two
seperate syndromes. For the 1st 7 mths of his life, it was enough
for us to ncope with the Aperts side of things, so, other than
giving him his daily aspirin, we filed the Sturge Weber side of
things safely in the back of our minds.
In January this year, as we always knew it would be, out of the blue
came his first cluster of seizures. I am a nurse and my husband is
a doctor, but there is nothing that could have prepared us for the
week of seizures we had ahead. Luca ended up in PICU a couple of
times, as he began to turn blue and stop breathing with his seizures.
Thankfully, we got through it, and he came home on Phenytoin and
Carbamazipine. He has since had one more seizure (again when he
stopped brething), which we think was sparked by a virus. We have
found that he is very drousy with the medications, and is sleeping a
huge amount during the day. I was wondering if other people have
found the same?
I have visited this site for the first time today, and had a sneaky
peak at some of the photo albums. It was lovely to see so many kids
with SWS doing so well and getting the most out of life. It is hard
when they are so tiny, with such a long and uncertain road ahead, to
imagine the future.
I would love to hear other peoples' stories, particularly if your
children have had surgery, which we are looking into at the moment.
Look forward to hearing from you soon!

Hi Sonia- welcome to the group! I'm sure you'll get plenty of replies
and, hopefully, find some useful information and lots of support on
here. My daughter Claire is nearly 30 (we're having a big party in
June to celebrate!) but as you have probably seen there are quite a
few families with younger children and babies in the group.
Love to you and your lovely little boy
Trish x

Hi, my name is Sonia. My son Luca is 8mths old, and was diagnosed
at birth with both Apert syndrome (conjoined hands an toes,
premature fusing of bones in the skull), and Sturge Weber.
Not knowing that anything at all was wrong during my pregnancy, it
came as a huge shock when Luca arrived having not one, but two
seperate syndromes. For the 1st 7 mths of his life, it was enough
for us to ncope with the Aperts side of things, so, other than
giving him his daily aspirin, we filed the Sturge Weber side of
things safely in the back of our minds.
In January this year, as we always knew it would be, out of the blue
came his first cluster of seizures. I am a nurse and my husband is
a doctor, but there is nothing that could have prepared us for the
week of seizures we had ahead. Luca ended up in PICU a couple of
times, as he began to turn blue and stop breathing with his seizures.
Thankfully, we got through it, and he came home on Phenytoin and
Carbamazipine. He has since had one more seizure (again when he
stopped brething), which we think was sparked by a virus. We have
found that he is very drousy with the medications, and is sleeping a
huge amount during the day. I was wondering if other people have
found the same?
I have visited this site for the first time today, and had a sneaky
peak at some of the photo albums. It was lovely to see so many kids
with SWS doing so well and getting the most out of life. It is hard
when they are so tiny, with such a long and uncertain road ahead, to
imagine the future.
I would love to hear other peoples' stories, particularly if your
children have had surgery, which we are looking into at the moment.
Look forward to hearing from you soon!

Hi Lynn

Thanks. It was taken at playgroup & we got 3 really lovely ones this year. My little boy is growing up!

Georgina

Hi Donna

I definitely would get a second opinion on the check ups, since Jacob was 8 weeks old ours have never been less than 3\4 months apart.

How is Hannan after her laser? Jacob also had it on Tuesday and has been complaining a bit more that it's stingy. I think he's just getting a bit older and more aware of things.

Your photos are gorgeous, the one of the 3 of you is superb!

Christine x

Hallo allemaal,
Wat leuk dat er weer een lotgenoten dag is.
Vorig jaar ben ik in Hilversum geweest. Zag daar best wel een beetje
tegenop allemaal onbekende voor mij. Ik heb toen gebruikt gemaakt
van het carpoolen, was toen ontzettend benieuwd wie mij kwam halen,
een naam en stem had ik maar was erg nieuwsgierig wie daar bij hoorde.
Om 10.30 uur stond ze voor de deur het klikte meteen. Op weg naar
Hilversum hebben we heel wat afgebabbeld. Door al dat babbelen reden
we haast nog verkeerd.
Bij aankomst werden we verwelkomt door Wouter en Simone. En toen je
voorstellen aan de mensen die er al waren, oh ben jij die, oh dan ben
jij zeker die, lachen hoor, mijn nerveusiteit was gelijk weg. De
verhalen kwamen gelijk los. Er waren toen ook heel wat echtparen
waarvan de partner een whiplash had.
Zelf heb ik toen een hele tijd gekletst met een jong stel die net papa
en mama waren geworden. Hij had het er erg moeilijk mee dat hij zo
weinig kon met de baby. En door het vertellen van alles en nog wat heb
ik toch de indruk gekregen dat ik nog iets betekent had voor iemand.
Om een uur of drie was er een lezing, waarover weet ik niet meer. Voor
de rest kon je je opgeven voor een nekmassage of een voetbehandeling.
Zelf ben ik voor een voetbehandeling gegaan,het was heerlijk ontspannend.
Om half zes gingen we dineren, ook dat was voortreffelijk, buiten het
eten was het ook gezellig om zoveel mensen te ontmoeten.
Tussen door hebben we gelukkig ook lekker kunnen rusten waar ik dankbaar
gebruik van hebt gemaakt.
Ik hoop dan ook dat ik 4 september weer een hoop mensen mag ontmoeten van de
lijsten.
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

Hoi
lees dat hier nog een gerda is
ik zal me gerda H noemen ivm met verwarring
want ik hebdus zelf geen whiplash
groetjes
gerda H
_ _ _ _ _ _ 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 Shelley
any news on Luke's schooling yet?
Lynn

Hi Donna
the photos are gorgeous, I love black and white photos! The one with
the ice cream is really cute too.
Lynn

Hi Antonia
I would love to come down to you for a get together! I know it's a
long way, especially for Donna, but if people are willing to travel
and maybe make a mini holiday out of it I'm sure they will enjoy it.
Lynn

Donna
They are really gorgeous photo's. I love the one of Hannah running
Shelley x

Hi
I have just posted a couple of photos from our holiday to Barcelona
last year - our first family holiday for 4 years because we have were
too afraid to go anywhere before with Hannah's epilepsy.
Check out my kids eating chocolate icecream!
I've also included a photo which Mark gave me for my birthday of
Hannah, Jack and I together - he had it made up in a box frame and I
love it! The perks of living with a photographer!
Donna

Hi everyone

Thanks for all advice (and for late night chat, Katie!!)

I managed to speak to Hannah's consultant today and he semi-apologised on behalf of his Registrar. Says he needs to teach him some more!

He said that a pressure of 23 in an adult would not be treated but the Registrar has made the right call as 23 in a child is the beginnings of what they have been looking for - slowly progressive glaucoma. He said I should think positively as they have identified it really early.

He said Timoptol is his first choice of drops and has been on the market for about 30 years. The side effects can be worsened asthma and worsened Reynaulds syndrome - Hannah is quite chesty with a cold (and we were prescribed an inhaler when she was little to use when she had a cold but hasn't needed it for a while) so he said I should keep an eye on her breathing.

He said I should see this as a daily vaccination to prevent progression and there's good evidence that drops can prevent loss of eyesight over the years. He would diagnose her as having early glaucoma but the drops could reverse her into normality. The pressures are definitely too subtle to suggest eye surgery at this point.

Anyway, about to try and persuade Hannah to have her first lot of drops. Wish me luck - you might just hear her screaming from all the way up here in Scotland!

Donna

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Hi Georgina
I love the new picture of Nathan, he looks so cheeky!
Lynn

Hi Donna
sorry I can't be of help with Glaucoma, I hope you get the help you
need. Please let us know how you get on.
Lynn

Hi Donna
It seems that yes glaucoma is present with the pressure being high in
the eye which has the birth mark on it. At least that is the way I
understand it... Danny has glaucoma checks every 6/8 weeks under GA
at alder hey and he has had several treatments including timoptol
eyedrops. Danny was on these eyedrops when he went in for his
hemispherectomy op in Feb 06. He had an irregular heartbeat at the
begining of surgery and the neurosurgeon still went ahead with the
op... then post op they asked the eye doc if they could stop these
drops for a short period to see if they made a difference to his
heart regularity - which he agreed to for 3 days to see if it made
any difference but it didnt, and they said that his heartbeat wasnt
dangerous that it was just Dannys heartbeat and so we continued with
these eyedrops again and they did keep the eye pressure down.
Previous to that Danny has had other pressure reducing eyedrops which
have worked and some breaks in between ands also he has had a
trabeculectomy eye op where they made a drainage hole in th eback of
the eye to combat the glaucoma, which worked really well and for a
long period, also he has had laser surgery which worked for a shorter
period. At presednt Dan isnt on any eyedrops as his pressures have
been consistently low for 12 months so there is hope after diagnosis
and regular checks are the key. I dont think the specialist who you
saw today was very thorough in the explanation given, and I think
that there was maybe a mistake on the prerscription saying which eye
they need to be put in so I would agree it is wise to double check -
Danny once had one saying put the drops in the left eye when the
right one is affected by birthmark and glaucoma!!!! I checked and it
was human error!! Sometimes when our children have been through so
many surgeries and hospital visits the consultants think us parents
know it all - it isnt acceptable that Hannah has been newly diagnosed
and even that is unclear as to whether or not she has been
diagnosed.... how strange? and also to suggest you may have an issue
with beta blockers without a thorough explanation - I would demand a
telephone consultation with the consultant tomorrow for an
explanation... this isnt good enough. Hope you get your answer
tomorrow, hope you dont mind me explaining about Dannys glaucoma
history - just wanted you to know that there are options and that it
isnt as bad as it may seem at this time. Poor Hannah and poor you for
having to be so confused and worried. Hope you get it sorted let us
know. Take care, Ingrid

Hi Donna
Sorry you have had such rotten news. I totally agree don't do
anything until you have had a chance to speak to an Ophthalmologist
properly.
Here is a link to Timoptol, if you haven't already googled
http://www.netdoctor.co.uk/medicines/100002589.html
I think the fact he said he could see slight cupping of the optic
nerve means she has the beginnings of glaucoma. Hopefully now it has
been caught early it can be prevented from getting any worse.
Hopefully when you have spoken to someone they will answer all your
questions.
Take care
Shelley xxx

Hello everyone
Please does anyone have some advice before I try and get hold of
Hannah's Consultant Opthamologist tomorrow.
For those who haven't met Hannah - she will be 4 on the 21st of this
month. She has a PWS across at least 50% of her body, SWS, had a
hemispherectomy in March 06 and is doing amazingly well. We went
into hospital today for laser treatment under a GA and while she was
in, I had arranged for the dental team and the opthamologists to have
a good look at her under the GA list (3 appointments in one!). I
even got her splint fitted after so 4 appointments in one must surely
be some sort of record!
Anyway, I was told the pressure in her right eye was 14 and the left
eye was 23 (was 16 a few months ago)and they could see slight cupping
of the optical nerve. I spoke to the Registrar and he said he had
prescribed beta blocker drops and said how it was important to stop
any damage to the optic nerve. Then, without me disputing anything,
he said, of course, if you feel strongly about the drops - you could
leave it for 6 months and have the pressures checked again!
So, I am a bit dumbfounded - partly because I had convinced myself
after everything Hannah has been through the with hemispherectomy
that glaucoma was one thing she might escape - got a bit tearful with
the nurses. I don't see why it should be my decision of whether to
give her the drops or not - I thought that was up to a doctor to
reccommend. I am also wondering if there is some reason I should
feel strongly - do they have terrible side effects or something?
Also, if your pressure is 23, does this mean she now has glaucoma?
I have been sent home with Timoptol (which says it contains Timolol
Maleate) but the bottle says I should give drops in both eyes. The
pressure in her right eye was normal at 14, no?
I need to call the Consultant Opthamologist tomorrow to find out more
about this and I have not started the drops tonight until I get some
proper advice. Any advice welcome!
Thanks
Donna

Have had a look at the SWGroup on Face Book- there's quite a few young
adults on there but they all seem to be American
Trish
ps Have stopped bouncing!!!

Hi,
I'd be happy to organise a get together this year. I live in Uplyme,
which is next to Lyme Regis, down on the south coast. The countryside
is lovely down here & its a favourite holiday destination so B&B has
to be booked early, now really or everywhere is full. I would try to
book the village hall which has plenty of space, wheelchair access, a
kitchen, toilets (I haven't checked whether they are wheelchair
suitable yet) and a big car park.
I'm flexible as to dates, I can do a weekend during term time or any
time during the summer holidays. Suggest some dates if you are
interested & I'll go with the most popular date.
Let me know what you think, I know its a long way for a lot of people.
I'd also love to come along to a meeting if one is organised more
centrally.
By the way, Max's laser treatment at GOSH was a doddle compared to
last time, he was really cool about not eating from 8.30 until 4pm
(!!!!) and he recovered very quickly from the GA. The staff there are
SO good. We stayed for 2 nights at the patient hospital - what
luxury, I could move in permanently! His face is not at all swollen
and some of the dots are disappearing already. It's odd that the full
effect isn't visible until 4 months later. I always think, Oh no that
was a waste of time, then I suddenly realise how much lighter his PWS
has become.
I'm glad to read Claire is feeling better, and welcome to the new
members of this group,
Antonia

Hi Antonia,

Slightly off subject, but it's funny you should post where you live because I was going to ask you just that! We are possibly going to be in your part of the world in a few weeks for a day and a night - March 17th, which is a Monday and unfortunately a school day I know, but if you are up for meeting somewhere for a coffee that would be lovely...I'll leave it with you, feel free to e-mail privately and if you like we can arrange something.

Glad to hear Maxs' laser went well, by the way.

Fran and Finlay
maxleonardwilby <ace2912@...

Hi,
I'd be happy to organise a get together this year. I live in Uplyme,
which is next to Lyme Regis, down on the south coast. The countryside
is lovely down here & its a favourite holiday destination so B&B has
to be booked early, now really or everywhere is full. I would try to
book the village hall which has plenty of space, wheelchair access, a
kitchen, toilets (I haven't checked whether they are wheelchair
suitable yet) and a big car park.
I'm flexible as to dates, I can do a weekend during term time or any
time during the summer holidays. Suggest some dates if you are
interested & I'll go with the most popular date.
Let me know what you think, I know its a long way for a lot of people.
I'd also love to come along to a meeting if one is organised more
centrally.
By the way, Max's laser treatment at GOSH was a doddle compared to
last time, he was really cool about not eating from 8.30 until 4pm
(!!!!) and he recovered very quickly from the GA. The staff there are
SO good. We stayed for 2 nights at the patient hospital - what
luxury, I could move in permanently! His face is not at all swollen
and some of the dots are disappearing already. It's odd that the full
effect isn't visible until 4 months later. I always think, Oh no that
was a waste of time, then I suddenly realise how much lighter his PWS
has become.
I'm glad to read Claire is feeling better, and welcome to the new
members of this group,
Antonia

may be worth a try with face book, seems to be the popular site at
moment.
luv karen

college is he going to
luv karen

Hallo Christa,
Herken ik heel erg. Het is een hele zware matte moeheid. Voelt niet zo als
wanneer je moe bent als je veel gedaan hebt. Ik word ook moe wakker, ga moe
naar bed. Slaap ook niet goed. Was voor het ongeluk ook het energiekste
mens. Ik werkte full-time en had 's avonds thuis nog zin van allerhande
dingen te ondernemen. Verheugde me er ook op om leuke dingen te doen. Nu heb
ik zelfs de fut vaak niet om ergens heen te gaan. Ken ook dat blije gevoel
niet meer bij leuke dingen die in het verschiet liggen zoals op vakantie
gaan. Mijn energie is helemaal weg.
Ik heb vanaf maart in de ziektewet gezeten en ook heel veel gerust. Voel me
nog net zo moe. En inderdaad met mijn hoofd wil ik ook van alles. Elk