Online Blog

hi christine,

Wow i can not belive how much alike the birthmarks are, i might have to agree its something in the water lol.
We have all enjoyed the photos thanks. I will let you know tomorrow how he got on and maybe put a pic of his first laser.

take care angela x

Hi Fran
I have approached the Hotel and I am waiting to hear back from
them. If they say no I have another avenue I can try. Hopefully we
will get together sooner rather than later.
Lynn

Hi Angela and everyone,
I have at last managed to post a few (10 sorry!)photos.Hope you enjoy
looking at them as much as I've enjoyed viewing everyone elses. Hope I
don't bore you too much! Thanks to my 11yr old son for the technical
lessons in how to do this.
Christine x

Lynn,
It goes without saying that our family wouuld love to be involved in
any get-together that could be arranged, travelling is not a problem -
I have checked out the hotels website and it looks like a lovely place
to stay...we would happily pay to stay over. Of course, as you are all
probably bored of hearing by now, for us it all depends on what date we
are given for Finns op. If we miss this one you will have to do it all
over again!
Fran in Shropshire

Good Morning everyone,

Some of us here are already familiar with another SW support group, but for those that aren't there was a link posted today by an American family who have a little girl called Hannah who has SWS, who's story was featured on TV. Her dad Mark said to pass it on to anyone who might be interested so here it is: http://www.youtube.com/watch?v=EqafZ6g-scu

It lasts about 10 mins, hope the link works!

Fran
Hi Lynn
Thanks for sharing your story about Alex, as you say things haven't improved greatly and I must admit before I had Jacob I'd never heard of SWS. It seems so unfair that they knew about it but didn't tell you directly and you had to find out from a physio.

The hotel looks great, do they have family rooms? If enough of us stay they may even give us a special deal on the rooms. We don't live that far away but I'm all for someone else making my breakfast for a change! It would be great to meet in that environment were we can all have a really good chat (we'll probably up till the early hours!) and relax and the children can play.

Thanks for looking into it.

Christine x

Sorry everyone, I just tried the link and it wasn't successful! I think I see where I went wrong, try this one http://www.youtube.com/watch?v=EqafZ6g-SCU . Fingers crossed.

Fran
fran bates <batesfran@...

Good Morning everyone,

Some of us here are already familiar with another SW support group, but for those that aren't there was a link posted today by an American family who have a little girl called Hannah who has SWS, who's story was featured on TV. Her dad Mark said to pass it on to anyone who might be interested so here it is: http://www.youtube.com/watch?v=EqafZ6g-scu
It lasts about 10 mins, hope the link works!

Fran
Hi Lynn
Thanks for sharing your story about Alex, as you say things haven't improved greatly and I must admit before I had Jacob I'd never heard of SWS. It seems so unfair that they knew about it but didn't tell you directly and you had to find out from a physio.

The hotel looks great, do they have family rooms? If enough of us stay they may even give us a special deal on the rooms. We don't live that far away but I'm all for someone else making my breakfast for a change! It would be great to meet in that environment were we can all have a really good chat (we'll probably up till the early hours!) and relax and the children can play.

Thanks for looking into it.

Christine x

Me again! I meant to ask Shelley - how are you getting on with Luke's
college place? Changing over from children's to adult's services is a
nightmare!

I've just been reading all your accounts of what happened when you had
your babies- it's just unbelievable! I know very little about Claire's
early years, only that her birth mum was advised to "put her in
hospital where the professionals can look after her" and there she
stayed for 5 years til she came to live with us! I do know that her
fits and glaucoma went untreated while she was still with her mum and I
wonder if some of her problems today were caused by ignorance. I really
did think that things would have improved over the years (Claire's 28
now)but it seems not.
Talking about medication- Claire was already taking Epilim and Tegretol
when she arrived and, fortunately, that combination works for her. Dr
Rosenbloom at Alder Hey told us years ago that we were lucky that
Claire's seizures were so well controled considering the extent of her
SW and he was right as she rarely has seizures (the last big one was
over 3 years ago) and it's always when she has a bad infection.
Hope we can all get together
Trish

Ditto Fran.

I stayed in overnight after having Nathan as it was the quickest way for him to be checked over by the eye doctor. First thing in the morning, before my husband got back to the hospital, the consultant paed came in and said 'hmmm, he has an extensive port wine stain (really?) & then proceeded to tell me all about SWS. I hadn't slept all night and just sat there wishing that my husband would walk through the door because I just couldn't take it all in. Certainly not the birth experience I had expected!

Georgina, Mum to Nathan 3, from South Yorkshire

Hi all
I find it so hard to believe that, after all these years, things
haven't changed regarding disclosure of the syndrome and attitudes
towards it. One of the reasons we started the Sturge -Weber
Foundation was to raise awareness and I thought we had succeeded to
some degree.
When Alex and Chloe (Alex's twin) were born I wasn't told anything
except he had a birthmark. Looking back I know they suspected SWS
but didn't say anything. Because the twins were born a bit early
(or that's the excuse they gave us) we had to go back to the baby
clinic at the maternity hospital every so often. I did think at the
time that it was odd that they asked so many questions about Alex
and were so pleased when he reached his milestones.
At four months old Alex had a recognisable fit and was admitted to
Alder Hey Children's Hospital. A week later, after a lumbar
puncture, blood tests and a CAT scan, we were sent home with a doped
up baby and a bottle of phenobarbitone. Epilepsy was mentioned but
that was all we were told.
When Alex was 10 months old he had a virus and couldn't keep his
medication down and was admitted to hospital. We noticed his right
arm was very limp and the physio came to see us on the ward. The
community physio was sent out to see us and she mentioned SWS. When
she realised we didn't know she was horrified, but she was our
biggest support in the early days, in fact, she introduced us to
Trish.
Not having the benefit of the internet back then, Colin went to the
main library and did some research. All he could find was that SWS
was a 'congenital mental disorder'. Lots of drugs and tantrums
later, and a deteriorationin his right side, it was recommended
that Alex had a hemispherectomy. It was the hardest decision we
have ever had to make but , excluding all emotion, we didn't have a
choice. The hemispherectomy was done just after his 4th birthday
and he was in hospital for three weeks. Luckily for us it was a
success and 16 years later Alex is still fit free.
I would suggest that you all ask for leaflets or posters fron the
Sturge Weber Foundation and leave them everywhere you go where they
may be of use.
I may be able to get a free room in a local hotel to meet up, if I
can say that people staying overthere I may stand a better chance.
Have a look at the hotel and see if you think it is affordable and I
will see what I can do.
http://www.devonshirehouse.co.uk/home.html
Fran, Dr Appleton didn't see Alex or any of the other SWS patients I
knew, it was Dr Rosenbloom but I think he has retired now. So there
have actually been many more SWS patients at Alder Hey than Dr
Appleton is aware of.
Take care everyone and keep posting
Lynn

Hi everyone,

Christine, your comments about the paediatrician rang a bell with me - they said almost exactly the same to us. When he was born the paed. came round before we were allowed home and the first thing he said was 'oh dear,dear me' (which is not what you want to hear when you have just had a baby), he briefly mentioned the name of a syndrome that I couldn't even remember afterwards but go home and don't worry, it's very rare! We had a hospital check-up at one year old and were discharged after being told that ' he is one of the lucky ones'. Less than a week later he had his first seizure.

Lynn - yes I can confirm that we see Dr Appleton (neurologist) and Dr May (neurosurgeon) at Alder Hey. They seem to be the top dogs. Dr Appleton has been there 15 years and he told us we were only his 5th case.

Angela - I havn't heard any definate dates when Larry will be over here yet. Of course we don't need to wait for him! I am very flexible and open to any suggestions...we are waiting for a surgery date though which could be anytime.

Finlay was 5 yesterday! He had a good day, lots of visitors to play with and a picnic in the garden. We had a 'party-share' with another little boy in the local village hall last Sunday.

Fran in Shropshire (mum to Finlay,5, SWS)

Hi Angela and everyone
Thanks for sharing Benjamin's story, it sounds like he's a little fighter and we are looking forward to meeting you all.

We also don't have much confidence in some of the local paeditricians, we were introduced to the possibility of SWS when Jacob was less than 24hrs old as the 'caring' paediatrician informed me they would do a scan to 'examine contents of baby's skull' as there was a dreadful condition he may have but go home and don't worry as it's very rare! The same Dr told us 8 weeks later that they wouldn't do an MRI scan as he wasn't showing any symptoms and as the PWS was bi lateral the chances of him having SWS were decreased. It was only when we went to GOSH at 16 weeks that they told us the chance of Jacob having SWS was greatly increased because of the bilateral PWS. He then had an MRI and was disgnosed with bi lateral SWS.

It's difficult getting the Epilepsy medication right, sometimes they don't work together the way you want them to and things actually go worse, it then takes a while again to get them off it and try something else. Jacob is also on lactulose as he has terrible problems with constipation, I'll not go into details.

Better go out in the garden, the sunshine is calling. Hope you all enjoy the rest of your weekend.

Christine & Jacob xx

Hi Lynn

I can't believe it either that the medical profession don't make these links. Jane at GOSH has asked if she can pass my number on a couple of times but no-one's ever rung me. Not that I'm an expert as Jacob's only 5 but it's nice to speak to other's in the same position and swop experiences. Prior to meeting Claire and Trish in March of this year we had only ever met one other little girl in Great Ormond Street when she was having laser so didn't get chance to have much of a chat. I've learned so much more in the short time I've been a member of this group. I think we know more than some of the medical profession as we've also had bad expereinces locally.

Christine x

Hallo Allemaal,
andaag heb ik eindelijk eens wat goeds te melden, ik was reeds geruime
tijd bezig om, weliswaar beperkt, te gaan reintegreren, welnu een
reintegratie-deskundige van de kompasgroep werd ingezet en hij gaf wat
adviezen mbt scholing en dergelijke, het goede nieuws is dat mijn tweede
aansprakelijke partij Zurich, volledig mee gaat en ook nog eens is
begonnen met het tijdig uitbetalen van voorschotten, ik ben
verschrikkelijk blij maar ook verbaasd dat we opeens wel de goede kant
op gaan...
Mijn reintegratie gaat richting verzekeringswerk en ik zal binnenkort
starten met de cursus Assurantie B, eerlijkheid gebied mij jullie mee
te delen dat ik hierna voornemens ben om de module personenschade te
gaan doen, met deze diploma's kun je in de verzekeringsbranche de
afhandeling van oa letselschade in gaan, dat dit traject ons allen
boeit of bezig houd is duidelijk, mijn insteek is tweeledig, ik wil
weten aan welke regels ik me dan moet houden, deze zijn dan
natuurlijk ook voor mijn tegenpartij geldig en aan de andere kant ben
ik voornemens om door te gaan op het pad waar ik nu zit, te proberen
de redelijkheid in het afhandelen van schade te krijgen.
Zoals we nu bezig zijn moet de politiek wel naar ons gaan luisteren,
wanneer de letselschaderegelaars de politiek niet eerder hebben
afgetroefd echter, grappige is dat ik vandaag met mijn
letselschaderegelaar een gesprek over de gang van zaken had en over
algemene zaken en hij mij toevertrouwde dat men al bezig is om
termijnen van redelijke afhandeling te gaan stellen cq bepalen, dit
kan jaren duren natuurlijk maar redelijkheid zal een belangrijk woord
bij de verzekeraars moeten worden, en laat ik dan eerlijk zijn, wie
hebben ze nodig om dat erin te brengen, juist mensen zoals wij,
ervaringsdeskundigen, wij kunnen de zaken daar behoorlijk op orde
brengen, ik ga het gewoon proberen dus.
GRoeten uit een regenachtig Almere,
Jeroen

Hi Glenda

Jacob sees Dr Aylett every 1\2 years (Just because it's a long way for us to go) and is seen by a local paediatrician every 3\4 months. I don't have her e mail address but have a postal address. Let me know if you want it.

Christine x

Dr Appleton at Alder Hey Hospital in Liverpool sees SW patients, and
Paul May at Alder Hey usually does the neurosurgery. They are very
good. If you read this Fran can you confirm? www.alderhey.com/
Lynn

Morning Angela,

Just wanted to say hello - thanks for taking the time to go over Bens story again, it's difficult trying to remember details of everybody acurately! Isn't it great about Christine being so close - I'm quite jealous!

Fran in Shropshire (mum to Finlay, big 5 now, SWS)
angela <angiefor27@...

Hi christine / everyone
After reading your last message on here i realised that i have not
told you all about benjamin.
Benjamin was 14 weeks old when he had his first seizure we were
totally unaware of sws until this point, on being admitted to
hospital we were first told meninitis he under went various test
after countless seizures he was given a ct scan. We were told that
they thought it was sws but were tranfering him over to pendalbury
childrens hospital to have a mri scan which confirmed he had bi-
lateral sws. After a total of around 3 weeks in hospital we were let
out with his medication he was put on phenobarb 3ml bd and
lamotrigine 5mg bd. We were told he would have learning difficulties.
Benjamin was then seizure free for a futher 14 weeks he was also
developing ok was rolling over doing what normal babies do. They had
increased his lamotrigine in hopes of taking the phenobarb off but as
they started to reduce the phenobarb he started to have seizures
again, at this point Benjamins Paediatrician was away on holiday so
he was left with all the other docs at the hospital who in my opinion
has no idea how to treat sws, they carried on reducing the phenobarb
even after i had stated that i thought that was the cause, this made
seizures so much worse some were lasting around 1 1/2 hours. I told
them i wanted tranfering back over to pendalbury as seen they had no
idea what they were doing. We were and he was put back on his
phenobarb after various other drugs were tried we were added with
eplim, all went well we were let out again but he was still having
daily seizures all lasting around 1 to 2 minutes self resolving.
Benjamin continued like this and at christmas time we noticed a
change in Benjamin he was no longer looking at us we could not get
him to follow our hands i told his Paediatrician who must of
misunderstood me as he tought i ment after a seizure not all the time
which can be normal i am told. Anyway seizures got worse and he was
admitted back to the ward when his doctor could see for him self that
bens sight had got worst, we were seen by the eye doctor at wigan who
could not find a cause saying that his eyes look normal a little
raised pressure not much and he wrote to mr loydd to see Benjamin but
bens doctor decided to do a ct scan, this has shown a real bad
decline in Ben's condition the area on his brain has got i would say
twice as bad.
We have been told they are not sure if it will stop on its own or
continue to get worst but there is nothing they can do to stop it.
Any way since then we have figured that Ben seizures have been linked
to him going to the toilet if he does not go daily he fits so he has
been put on lacative which is working well we can sleep at night
again. His doctor is going to see how he gets on for a while then
maybe try to reduce some medicene down as it might not be epilepsy
after all finger crossed he will do well.
Ben is very delayed he can only roll over a the moment he is now 15
months can not sit yet but trying very hard. Anyway sorry about my
exteremly long story just thought i would let you all know about
Benjamin.
thanks for reading Angela x x

Hi christine / everyone
After reading your last message on here i realised that i have not
told you all about benjamin.
Benjamin was 14 weeks old when he had his first seizure we were
totally unaware of sws until this point, on being admitted to
hospital we were first told meninitis he under went various test
after countless seizures he was given a ct scan. We were told that
they thought it was sws but were tranfering him over to pendalbury
childrens hospital to have a mri scan which confirmed he had bi-
lateral sws. After a total of around 3 weeks in hospital we were let
out with his medication he was put on phenobarb 3ml bd and
lamotrigine 5mg bd. We were told he would have learning difficulties.
Benjamin was then seizure free for a futher 14 weeks he was also
developing ok was rolling over doing what normal babies do. They had
increased his lamotrigine in hopes of taking the phenobarb off but as
they started to reduce the phenobarb he started to have seizures
again, at this point Benjamins Paediatrician was away on holiday so
he was left with all the other docs at the hospital who in my opinion
has no idea how to treat sws, they carried on reducing the phenobarb
even after i had stated that i thought that was the cause, this made
seizures so much worse some were lasting around 1 1/2 hours. I told
them i wanted tranfering back over to pendalbury as seen they had no
idea what they were doing. We were and he was put back on his
phenobarb after various other drugs were tried we were added with
eplim, all went well we were let out again but he was still having
daily seizures all lasting around 1 to 2 minutes self resolving.
Benjamin continued like this and at christmas time we noticed a
change in Benjamin he was no longer looking at us we could not get
him to follow our hands i told his Paediatrician who must of
misunderstood me as he tought i ment after a seizure not all the time
which can be normal i am told. Anyway seizures got worse and he was
admitted back to the ward when his doctor could see for him self that
bens sight had got worst, we were seen by the eye doctor at wigan who
could not find a cause saying that his eyes look normal a little
raised pressure not much and he wrote to mr loydd to see Benjamin but
bens doctor decided to do a ct scan, this has shown a real bad
decline in Ben's condition the area on his brain has got i would say
twice as bad.
We have been told they are not sure if it will stop on its own or
continue to get worst but there is nothing they can do to stop it.
Any way since then we have figured that Ben seizures have been linked
to him going to the toilet if he does not go daily he fits so he has
been put on lacative which is working well we can sleep at night
again. His doctor is going to see how he gets on for a while then
maybe try to reduce some medicene down as it might not be epilepsy
after all finger crossed he will do well.
Ben is very delayed he can only roll over a the moment he is now 15
months can not sit yet but trying very hard. Anyway sorry about my
exteremly long story just thought i would let you all know about
Benjamin.
thanks for reading Angela x x

I can't believe that no-one has picked up that you two have children
with the same condition, yet you move in similar circles. The
medical profession really is dense sometimes.
I have never met anyone else who have children on Trileptal. Do the
people who's children have reacted badly to drugs mind me asking what
their reactions were? Luke reacted very badly to Lamotrigine,
behaviour wise. We completely lost him for while. He didn't sleep
he just paced round and round his bedroom, and reacted very violently
if we tried to intervene. When I took him to GOSH and told them how
he had changed they arranged for us to see a psychologist. She
watched him walking round the room, twirling a piece of paper in
front of his eyes and refusing to make any eye contact etc and asked
if we had a problem accepting he was severely autistic. Amazing how
he wasn't autistic until he went on Lamotrigine. They wouldn't
accept it so I did something I said I would never do and took him off
it myself. Amazingly I got my boy back. GOSH still refused to
accept it. We transferred to The John Radcliffe in Oxford.
Oxcarb is a totally different kettle of fish. It took a while to
link this to the drug and it has never been proven. Every 5/6 nights
Luke would wake up vomiting, he couldn't stand, his eyes were just
moving up and down and he was freezing cold. This always happened
about 1am and I could never get the night GP service to come out.
The last time, we managed to carry him into the car and took him to
them. They were amazed that his temperature was below hyperthermia
levels. They admitted him immediately as I knew they would if they
could see him. The hospital were talking about strokes and I would
have been terrified if I hadn't seen it quite a few times
previously. I was still very scared and previously had convinced
myself he had a brain tumour. We reduced the Oxcarb back to the
original levels and it didn't happen again, until we tried to reduce
it to get him off it. This time it happened at 6am and was much
milder but I am too scared to change the Oxcarb again so we are still
on it and Luke will probably have to grow out of it.
Do any of you actually wonder what your children would be like drug
free, because I know I do?
Shelley xx

[INLINE] Does anyone have an email address for Dr Sarah Aylett and/or any other doctors in the UK who treat SWS patients?

Thanks!

Glenda

Hi Angela

I can't believe we haven't bumped into each other as I also do a lot of shopping at Tesco. I will gladly share all my experience, not that I'm an expert but we have coped with things alone for the past 5 years really. I felt the medical profession up here didn't seem to know much about the condition. We were given loads of wrong information when he was born.

Jacob goes to Great Ormond St for his laser and to see Dr Aylett at the Sturge Weber Clinic in London. We went last May and are only due to go again next May 08. We see a Paediatrician at Bolton every 3\4 months and see Mr Lloyd at Manchester Eye Hospital for his Glaucoma every 2\3 months. Have you had Benjamin's eyes checked yet? They could see signs of Glaucoma in Jacob at 8 weeks old! He has been in Royal Bolton a couple of times with chest infections that have caused lots of seizures. He also has hearing tests regularly, as he can't hear as well in in his right ear and reviews with the speech therapist as he is slightly behind (not that you'd know it as he never shuts up) and she wants to keep an eye on him because of the epilepsy.

It would be lovely to meet yo all, you are very welcome to come here. Let me know once Benjamin's laser treatment is out of the way. Good luck

Christine x

Ik heb zelf WL, mijn man niet. Met hem kan ik praten. Wij knuffelen elkaar
ook nog vaak. We zijn gaan zoeken naar een juiste positie. Een
zit/lighouding en zo. Ik heb met mijn man dus heel veel geluk, dat hij
begrijpend is en geduldig is. Wanneer ik erg veel pijn heb, zeg ik dat ook
en stoppen wij met knuffelen. Sinds het ongeval slapen wij wel apart. Ik
word namelijk te vaak wakker en kom door zijn snurken nog moeilijker in
slaap. We hebben hier over gepraat en slapen nu gescheiden. Elke avond komt
hij nog wel even bij mij liggen, vaak moet hij wat afstand houden omdat ik
te veel pijn heb. We houden dan elkaars handen vast. Hij heeft het er ook
moeilijk mee. Hij praat er uiteindelijk wel over, maar eerst loopt hij er
een tijdje mee rond en na een tijdje zegt hij wat hem dwars zit. We helpen
elkaar door deze moeilijke tijd heen.
Het is inderdaad zo dat mannen anders reageren dan vrouwen. Mannen willen
graag problemen oplossen, vrouwen willen graag er geluisterd wordt. En zo
zijn er nog veel meer verschillen.
Een aantal maanden geleden heb ik het boek gelezen van John Gray Mannen
komen van Mars, Vrouwen van Venus. Het bevestigde mijn ideeën over mannen.
Niet dat iedereen volledig voldoet aan de beschrijvingen, maar er zit zeker
een kern van herkenning in. Misschien is dit iets om een keer te lezen en op
die manier kan je misschien je man steunen doordat je meer inzicht hebt
verkregen in hoe een man in het algemeen denkt en voelt. Het is maar een
tip. Overigens leer je er ook uit hoe algmeen een vrouw denkt en voelt. En
is het misschien ook goed dat je man het leest.
In elk geval ben ik er van overtuigd dat communiceren heel erg belangrijk
is. Voor je gevoel uit kunnen komen zeker binnen een relatie vind ik heel
belangrijk. Je kunt elkaar daardoor beter begrijpen en een manier vinden om
elkaar te steunen. Uiteindelijk is niet alleen de WL-er de dupe maar ook de
mensen in de directe omgeving, zoals je partner en kinderen.
Tot zover mijn reactie.
Veel sterkte
Sjoukje
_ _ _ _ _ _ telefoonnummers en adressen voor vragen en hulp _ _ _ _ _ _ _ _
helpdesk medisch/juridisch: 036 - 5386170 Wouter van Eldik
helpdesk persoonlijke steun: 079 - 3518438 Gerda van Zijl
helpdesk persoonlijke steun: 020 - 4270311 Lenie de Vries
helpdesk lijstbeheer: 0485 - 455590 Marjon Vloet
internet (info, forum, chatbox etc.) www.spws.nl

Wow i was thinking we were the only ones near here i go do my shopping at the tesco at reeboc quite often.I would love to meet up sometime will be nice to talk to some one whos been there. Which hospital do you go to bolton? we are always in wigan or pendalbury when he has got real bad. will let you know friday how he has got on.

angela x

isn't it terrible what medication can do. christina is also on
phenobaritone and keppra --we have been trying to reduce
phenobarbitone but so far not getting anywhere.
karen
-

Hi Angela

I can't believe it, we are in Horwich, very close to you! Good luck at Booth Hall, we'll be thinking of you. Let us know how you get on. Jacob has a brother Tom 11, and a sister Eve 4 in a couple of weeks.

Peoples reactions vary and I could write a novel (as I'm sure could everyone else) on the different reactions we have had, including measles, face painting (?) and sun burn and my health visitor telling me she was very shocked at Jacob's appearance! Needless to say I've not had much contact with her. I find that if I'm feeling upset I just don't look at people that way I'm not upset by their reaction. If I'm feeling ok I look people in the eye and smile (though not always). I have asked someone once if they have looked in the mirror that morning because it's not a pretty sight. I've also had to be dragged back by my husband before I've assaulted someone!! We have been trying to teach Jacob how to respond to people as he is now very aware of their reactions but he gets a bit embarassed. I feel very strongly that it is other peoples problem, not ours. Our children are beautiful and we are all different. They need a huge lesson intolerance.

If you'd like a chat sometime, it might be nice to meet up as we're so close and you can feel very isolated. (We've quite a big garden - small house though and the children could all play.) I don't feel so isolated since I was introduced to this group by Trish, (alias fedupnow) who we met at a Birthmark Support Group Fun Day.

Lovely chatting to you.

Christine x

hi christine & jaccob

Benjamin is going into booth hall childrens hospital under mr davenport next friday morning.
The other children are benjamins bothers and sister ashleigh is 9, kieran is 7, and lewis is 2.
Have peoples reactions got any better over time i find this very hard to deal with especially the really ignorant ones that gasp when they see him if it was not for my other children i would have been locked up by now for g.b.h only i try to ignore it as thats how i want my kids to deal with it. i will let you know how we get on and post some more pics. Replying to your other message benjamin meds are phenobarb, lamotrigine, eplin, asprin daily he is also on lacative because we have figured that if he does not go very regular he fits more. He was on phenatoyn ( not sure on spelling ) i think he had a very bad reaction and got very upset when he was having the loading dose to me it looked like he was hallucinating, this never helped the seizures much and we took him off it and replaced it with the eplim.Where are you from ? we are in leigh lancashire.

angela x

Hi Angela

Glad to hear Benjamin's test area went well. Where and when is he going to have it done? Jaccob had his first (at Great Ormond Street) when he was 18mths old. Dr Syed just did the left side of his face as she didn't know how he'd cope. He coped really well, so 6 mths later she did the whole of his face - 748 dots! As it is done under general anaesthetic Jacob has had 1 treatment every 6mths (with a gap of a year the odd time). Now he is older he certainly seems more aware of the pain, and other peoples reactions, as it does look quite strange. He copes brilliantly and we dose him with Nurofen for a few days afterwards. His eyes can be particularly swollen so the last couple of times they have also given him a steriod injection.

We were really pleased with the results but as I said some of the deeper vessels are returning which is disappointing but it has certainly made the birthmark paler. It's now more red than purple. As a Mum I wanted them to treat the whole of his birthmark (it's also on his ears, scalp chest, neck, bottom, legs and feet) but I've had to accept that's not possible. We need to concentrate on the area that's most visible.

I'll scan some early pictures and also put some recent ones on. Although the digital camera sometimes makes his birthmark look paler than it actually is. I'll get my 11 yr old son to give me a lesson in how to do all this.

Christine x

PS Jacob asked who the other children are in the picture. He likes to know the full details!

hi christine

benjamin is due his first laser treatment on the 4th may he has had a practice lot and that seems to have worked really well. How much and how often did jacob have done at once. I will look nforward to your pics as soon as you get them on.
angela mum to benjamin x

Hi Karen
No Luke is not on Carbamazepine he is on Oxcarbazepine the same as
Christina. 750mg b.d. We have a huge problem with Oxcarb though.
We can't increase it as he has a dreadful toxic reaction, but when
they tried to reduce it, with a view to taking him off it the same
thing happened. So we are a bit stuck with it. Can't go up and
can't go down. He is also on Topiramate.
What medications is everyone else children on and have you ever had
problems with reactions?
Shelley x

Hello everyone,

Just wanted to say thanks to everyone for posting the lovely photos. Jacob and I have really enjoyed looking at them together. Please keep posting them. as it's great to put names to faces. I will put some on as soon as I work out how to do it!

Angie your photos of Benjamin just reminded me of Jacob when he was a baby, his facial birthmark is virtually identical to Jacobs. He has had 7 laser treatments with another one due on 29\5. He'll then have a break for a couple of years. It responded really well at first but has started to go redder again. I'll have to scan some of Jacob when he was a babyso you can see. I hadn't entered the digital camera era then!

Christine x

Mum to Jacob 5, SWS, PWS, Epilepsy, Glaucoma

it is interesting to hear about Luke- is he still on carbamazepine.
christina is on oxcarbamazapine-600mg am and 900 pm- he are going to
increase to 900am also next week. were you told anything about
trigeminal neurolgia- the epilepsy specialist nurse mentioned this to
me. she is going to speak to the neourlogist next week- the pain is
wearing her down and she is sleeping more.she hasn't been at college
this week because of it. it's very frustrating when you can't wave
a 'magic wand' to help- i will let you know the feedback i get next
week.

Hi Karen
I came across Trigeminal Neuralgia when Alex was having severe
migraines last year, his eye would water when he had a severe headache
and that's what came up when I typed the symptoms into google! It
wasn't conclusive though so I don't really think it was that but I may
mention it to Paul May when we see him in December. It is comforting
to know that a puffy face is 'normal' though, I have never seen it
documented, has anybody else?
I do my last exam on the 12th June so maybe we could finally meet up
again, (not at the hospital this time!)?
Lynn

many thanks to all with different comments- i have been on line and
have information relaing to trigeminal neurolgia- changes in blood
vesselresulting in pressure on nerve; seems to meets all criteria of
what chrisitna describes and as sturege weber is all about distorted
blood vessels i'm checking this out. will let you know outcome.
karen

I don't know if Claire gets headaches as she's not able to let us
know, but her face can be really puffy (eyes swollen shut, nose and
top lip nearly twice their normal size) in the morning and sometimes
it's dinner time before it goes down. She spent a day in hospital
having all sorts of tests but they couldn't find any explanation
other than the fact that because the blood vessels are abnormal fluid
doesn't drain properly and it's a form of oedema. It doesn't seem to
bother her (although she gets even more funny looks!) but I worry
because it sometimes affects her breathing. Has anyone else come
across this?

Hi Karen

My son also gets headaches usually after seizures. Sometimes they are very severe. almost like a migraine. I dose him with Nurofen or Calpol (don't know what I'd do without it!) and that usually helps. Although they can take a while to go.

He sometimes complains of pains in his head (not a headache) and pains near his eye, although I think that may be the Glaucoma.

regards,

Christine

Mum to Jacob, age 5, PWS, SWS, Glaucoma

has anyone heard person with sturge weber complain about facial pain
or headache pre or after seizure.
this pain wheter in face or head also happens when just got up in
morning lasting till midday.
thanks karen

Hi Trish
I haven't had any problems myself so it's hard to say why it's
happening. If it happens again I will TRY to look into it.
Lynn.

I had problems a while ago- it kept telling me there was a virus in the
message even when I'd just run a clear virus scan. Has anyone else had
this? Great to see all the photos- I try to take pics of Claire but she
doesn't do posing so I've got dozens of the top of her head or her
right ear! I'll have another go ..........

HI Shelley
on the left of the screen there is a task pane with Home, Messages
etc, Photos is the 7th one down. Click on it and on the next page
there is a button ADD PHOTOS on the top right of the page. Just click
on this and follow the instructions. (As you have sent me photos
before and obviously know how to attach them I am sure you will find
it a doddle!)
Good Luck
Lynn

How do we do photos then? I am a technophobe, so be gentle with your
instructions.
Shelley x

OK, that one got through, so here's one I've been trying to send
lately...
I'm having a problem posting this message, so sorry if it comes up
twice...
Hi all,
I just wanted to say how much I enjoyed looking at the photos on the
photo page. I've only posted one of Max because I can never choose &
if I get going there'll be about 100 of him! I'll try to sort out
just a few interesting ones to add to the one that's there.
Nathan looks so sweet!
His PWS is very similar to Max's, except Max has some on his chin & a
very very faint patch on his chest. Max has has 2 laser treatments at
Great Ormond Street.
He is getting stronger on his feet and his balance is getting better.
I've ordered him a wrist support from a website that supplies
protection gear for "heelies" !! otherwise he just falls onto his
weak wrist & sprains it.
I'd love to see photos of any more of the UK group who are happy to
post them on the site, it does help to get to know people.
Best regards, Antonia in Devon, Max's mum.
No virus found in this incoming message.
Checked by AVG Free Edition.
Version: 7.5.463 / Virus Database: 269.5.9/773 - Release Date:
22/04/2007 20:18

Hi there,
I've tried to post a message several times lately & I keep getting a
message back saying my post is not accepted. Maybe this one will get
through...
Antonia in Devon, Max's mum

hi lynn don't forget willing to help a get together.
would be nice to see all 'old' and new faces.
karen

Hi all
Just to let you know that I haven't forgotten about us getting
together. I am very busy at college at the moment but I am working on
finding a venue for us all to meet up.
Lynn

And, I discovered, if you smile sweetly enough, they will give you a second bottle of sunblock on prescription to give in to the nursery that your child is attending!!

Donna (Mum to Hannah, SWS, PWS, Hemi March 06)

Hello Everyone,
Just a quick reminder now that the nice weather has finally arrived,
don't forget that you should be able to get sunblock on prescription
from your GP for anyone who is undergoing laser treatment for a Port
Wine Stain.
Fran in Shrophire (mum to Finlay, SWS, PWS)

Hi Fran
Alex was also on a drip for a while, can't remember how long for, 15
years is a long time and I'm not getting any younger! Those early
days after the op. are a bit of a haze too.

what i was amazed at was how quick they recover after major surgery-
christina wasn't interested in drinking or eating for first few days
but hasn't stopped since!!!
when reading lynn's rsponse and comments on paul may i fully agree
with his committment to all family members who are involved with
the 'surgery'.
we trusted him 100% when he operated on christina.

This one is for all you hemi - op veterans...what do they do about eating and drinking for the first couple of days afterwards?

Fran
Lynn Buchanan <lb_uk_2k@...

Hi Shelley
yes I do remember you calling me about the twiching, it was one of the
things that upset me the most after surgery until I was told why it was
happening. Unfortunately for us there wasn't anybody we could talk to
as Alex was the first one, of the children we knew, to have the surgery.
I found I had a lot of 'silly' questions, for instance, I wondered if
Paul May would get tired when doing the op! Surely he must have a
lunch break :-)). Paul May was very good though and we felt safe in
leaving Alex in his hands. I'm sure Karen will confirm my opinion
about Paul May, he operated on Christina too.
Feel free to ask anything, however 'daft' it may seem.
Take care
Lynn

Hi Shelley
yes I do remember you calling me about the twiching, it was one of the
things that upset me the most after surgery until I was told why it was
happening. Unfortunately for us there wasn't anybody we could talk to
as Alex was the first one, of the children we knew, to have the surgery.
I found I had a lot of 'silly' questions, for instance, I wondered if
Paul May would get tired when doing the op! Surely he must have a
lunch break :-)). Paul May was very good though and we felt safe in
leaving Alex in his hands. I'm sure Karen will confirm my opinion
about Paul May, he operated on Christina too.
Feel free to ask anything, however 'daft' it may seem.
Take care
Lynn

just wanted to wish you luck its' a very stressing time waiting fo a
date. it's typical that seizures seem to quieten when a big decision
has been made. I fully undersatnad your anxieties our daughter has
had surgery also, she is aged 21. karenx
weks (just waiting nervously for a date!) - the main reason for him
is that we have failed to control his drop atteacks with meds, which
I believe Luke had problems with. Ironically, he has not had one at
all for the last couple of weeks (this is probably the longest drop-
free period we have ever had) but that is probably because he has
just got over chicken pox which did cause some pretty scary
generalized seizures. This has happened before when he has been
poorly - a bit like having a thunderstorm that clears the air for a
while, but they always creep back again. Christmastime was pretty
horrendous, bashing his poor face all the time - he had two black
eyes, a swollen nose (I swear it was broken but the GP said that was
unlikely at his age), plus various cuts and a permanent swelling on
his forehead where he would always land on the same spot all at the
same time! Since then they changed a little bit and
now a dip in the skin like a dimple, and you can feel a hard lump
under the surface....anyway, hopefully things will change after
surgery.
that the hemi has helped him. I need to know I am doing the right
thing putting him through it!

Hi Shelley,
thank you so much for your thoughts, please don't worry about making
any suggestions - that's what I joined the group for: to share ideas
& experiences.
I'm sure (but as usual I don't KNOW without EEG evidence, aargh!)
that Max just loses his balance now that he has started walking. He's
only fallen down occasionally because I'm behind him all the time
with his reins, so mostly I catch him & he has a soft landing.
Watching his body language, it really does look like a loss of
balance due to his hemiparesis & 'wobbliness' rather than a seizure.
It is getting better as he practices & gets stronger. Max has never
had 'drop attacks' before, his seizures were quite different & he
would remain sitting, eating or vocalising (repetitively) during
them. I'll keep watching & as soon as I think he might be having
seizures again I'll do something about it.
Is Luke about the same age as Max? Does he still have drop attacks or
are they controlled?
Best regards, Antonia, in Devon, Max's mum, 4 yrs, SWS PWS hemi '04

Hi
I just wondered if anyone knows how Alice, the little girl on the UK
SW website, is getting on? I think she was about 3 when her Mum wrote
about her & she'll be 10 now!
Georgina

Antonia,

One thing that I should have thought of before I replied to you this morning, was that Lukes drop attacks would happen even when he was sitting. So if Max only falls when he is on his feet I am sure that it is nothing and just part of his development. Really sorry if I worried you

Shelley xx
I have thought long and hard about whether to mention this, but feel you need to know. Have you considered that Max's falls could be seizures. I only ask because Luke used to have what are known as Akinetic seizures. He would just drop to the ground, generally head first. I may be totally wrong and obviously you see these falls, and they probably are just falls. Hope you don't mind me mentioning it. Feel free to ask anything.

Shelley xxx
Hello Georgina,
sorry to take so long to answer! I think I first heard about a
chicken pox innoculation when I was living in Germany. I didn't
follow it up because I was really wary about giving Max any
innoculations. His first seizures started immediately after he had
his first injections at 3 1/2 months old. It may have been a
coincidence but it really worried me. Its only since he's been
seizure free & tolerated his MMR injections well that I thought I
could take the risk of innoculasting him. I read about chicken pox on
the internet & although it is not a standard immunisation, Max's GP &
paediatrician agreed that it would be better for Max not to get full
blown chicken pox with the risk of seizures that would bring. As he's
4 and at school they did a blood test to check whether he already had
immunity & he hasn't, so he was innoculated yesterday.
Max is walking around now with me running after him (I have to put
him on his feet, he can't get up alone yet) I've noticed that he
doesn't try to save himself when he falls. He's got a right sided
hemiparesis so his right arm is quite floppy, but if he falls he
won't roll up or try to save himself in any way. I've got him a
bicycle helmet and those reins you use for toddlers - it works very
well, but there's no chance of me sitting & watching TV, we're off
around the house the WHOLE time. It's great!
Antonia in Devon, Max's mum, 4 yrs SWS PWS, hemi '04

Hi Lynn,

Finlay has always been a whizz on a computer, now he is at school I must start looking into the reading/writing aspect of things and see what there is to help him along, I will check out the sites you mentioned. Just for the information for others, the Family Fund supplied Finlay with a home computer and 12 months internet access. Also on the subject of computers, our local newspaper is coming to our house this evening to get a photo of us all to go with a little story on Finlay - I am putting an appeal out to local businesses to see if anyone would be kind enough to loan a laptop to us while he is in hospital having his op, so we can keep in close touch with dad and bro at home using messenger. I saw a family on TV a few weeks ago doing this and liked the idea, it meant whoever is at home can see the 'patient' for themselves and hear what the doctor has to say directly, also Finn can see and hear his brother on the days they can't get up here which will be most weekdays
because of school. Anyway, fingers crossed. They are also going to mention that if there are any other families in Shropshire we would be very happy to hear from them (I don't know of any!)

FRAN (mum to Finlay, nearly 5 , SWS)
Lynn Buchanan <lb_uk_2k@...

HI
have any of you considered your children using ICT (Information
Computer Technology), as a solution if they find it difficult to read
and write. For whatever reason, physical, visual etc. there is usually
a solution in ICT. There are also grants available to pay for a laptop
where this is appropriate. You can get speech recognition software
which will recognise the child's voice and type out what they say and
software to 'speak' what is on the screen. There are many solutions
and here are a few websites which I have found useful:
www.abilitynet.co.uk
www.rnib.co.uk
www.microsoft.com/enable
www.itcanhelp.org.uk
www.abilitynet.org.uk/myway/
www.drc-gb.org/
Hope you find them of some use, if I can be of any further help with IT
feel free to contact me.

Hi Christine. Thanks for your e-mail, it was really interesting to read how Jacob is getting on.

I will definitely be raising the eye issue with his consultant.

Thanks again.

Georgina

HI
have any of you considered your children using ICT (Information
Computer Technology), as a solution if they find it difficult to read
and write. For whatever reason, physical, visual etc. there is usually
a solution in ICT. There are also grants available to pay for a laptop
where this is appropriate. You can get speech recognition software
which will recognise the child's voice and type out what they say and
software to 'speak' what is on the screen. There are many solutions
and here are a few websites which I have found useful:
www.abilitynet.co.uk
www.rnib.co.uk
www.microsoft.com/enable
www.itcanhelp.org.uk
www.abilitynet.org.uk/myway/
www.drc-gb.org/
Hope you find them of some use, if I can be of any further help with IT
feel free to contact me.

Hi

Does anyone else have problems with sinuses or tear ducts? Hannah's birthmark is across at least 50% of her face and she has a blocked tear duct. When she has a cold, her eye swells as if she has done two rounds with Mike Tyson.

However, every time she starts a cold (today scarily!), we have about 3 days before she will go roasting hot and be susceptible to seizures. You could almost set your watch by it. Her nose gets really disgusting whereas my little boy always has a clear running cold. If Hannah gets antibiotics, she recovers quickly but I hate her having all these antibiotics. I think she is getting sinus infections from the cold but when I asked at the hospital recently they said even if she is there is not much that can be done about it.

I put tea tree oil in her bath tonight as her nose started to run today. I am particularly nervous as we started to reduce her Phenytoin on Thursday as she is now one year post-Hemispherectomy

Donna, Mum to Hannah age 3

Hi Georgina

Before we start apologies for the length of this e mail, I have just re read it!

Sounds like Nathan's doing really well and you have things under control and ready for when he starts school. You feel a bit more 'relaxed' (I'm not sure that's the right word to use) when their epilepsy is under control. Jacob has also ended up in hospital a couple of times but thankfully the last time was almost 3 years ago. The longest he has been seizure free was 10 months quite some time ago. He was on Epilim and Tegretol last year but all it did was zonk him out, he just wanted to stay in bed all day, we called him the 5 year old teenager at weekends! He's now just on Epilim and his seizures are quite unpredictable although they seem to be about every 2\3 weeks at the moment.

Jacob's first eye check was at 8 weeks (at our request as I had read about Glaucoma) we were devastated when he already had signs of it and was referred to Manchester eye hospital. At first the pressure was controlled by drops but it has been high for the last 2\3 years. He had diode laser to the inside of his eyelid (as they can't perform traditional drainage surgery in children with PWS) 15 months ago and unfortunately he needs it again. It can be repeated but may stop responding, very scary and something I can't really think about as sight is so precious. He is on three lots of eye drops twice a day but they're obviously not working. Please ask for Nathan to be re referred and regularly checked throughtout his life as Glaucoma can occur at any age. A friend's daughter had annual checks and last year (age 6) she had raised pressure which is now controlled by medication.

This is now Jacob's 2nd year at school and the only slight progress he has made has been in this year as his teacher is more assertive and highlighting his problems. Reception gave little feedback despite me continously asking for it. Both his teacher and head agree he needs a statement but say they're now difficult to get but I am in the process of compiling a parental request for statutory assessment to try to start the process again.

His main problem is that he is very educationally behind his peers and he is very aware of it, he knows he can't do things like the others and this has had a psychological impact on him as has his birthmark and his friends running away from him\not playing with him etc. This has sometimes lead to behaviour problems as he then finds things to do he shouldn't. I feel this has led to him being labelled as naughty so when incidents occur they don't find out what's happened properly, it's just blamed on Jacob. Sometimes it will be his fault but not all the time! His sight has also had an impact as his vision is quite poor in his right eye. I feel that school show little empathy for his very complex condition (despite me providing lots of information). With hind sight I should have been more proactive and got the ball rolling re a SEN at nursery but we were coping with a lot then and some problems hadn't yet raised their heads!

Sorry this is lengthy and sounds negative, we have had some positive times at school as well! He behaved beautifully during the Christmas concert and proudly led the toy soldiers out to do their dance, I shed a few tears as the year before all he'd done was sit on the teacher's knee

As you say good to talk or in my case write a novel!

Christine

Hi Georgina
Hope you don't mind me asking, but when you say Nathan had balance problems and
didn't try to save himself, can you explain more. I am only interested as Luke
had
something like this when he was about 18 months to 2 years.
Regards
Shelley (Mum to Luke aged 16)

Good luck for your TP. I go in for my op tomorrow so won't be posting for a while( unless I can type with my left hand!)

Trish

Aah, that sets my mind at rest- can sleep peacefully tonight!

Good luck Lynn. What ages are your students?
Shelley xx

great to see so many on line will be a great help to many who have
queries regarding sturge weber as often you feel isolated. Would like
to hear how others of similar ages are doing?
chrisitna has had a surgery twice- once when she was six then aged 16,
she has also had a vagal nerve stimuli which is at present not on.
any queries relating to these tyoes of seizure management please
contact.
chrisitna is obsessed with music does anyone else have this interest ?
love karen

You have a cross under your name when we look at it,I can't see one on
my name either but I bet you can see it!
I start my teaching practice today, poor students!
Lynn

What sort of little cross?

Donna

On the group messages on the right hand side..................... don't want to be left out!

Ja Jos, Misschien een wat late reactie, maar zoals zo velen, ben ik niet
altijd in staat om meteen te reageren.
Mijn libido is sinds het ongeluk echt 0,0. En dat heeft beslist niet met
mijn leeftijd te maken, want het veranderde echt opeens: vanaf de dag na het
ongeluk geen enkele interesse meer. Het moet iets zijn dat bekend is bij
(sommige) artsen, want één van de vele die ik heb gezien, vroeg mij er naar
in zijn lijst van vragen over verschijnselen. Gelukkig heb ik geen partner
die zich kan beklagen.
Mijn voeten gaan niet opzetten, nagels niet verkleuren, Maar wel heb ik
sindsdien opeens last van afbrokkelende nagels en mijn haren moet ik ook met
speciale crèmes behandelen, omdat ze zo droog en stroachtig zijn geworden.
Trouwens, wat ik ook niet lees van anderen, maar wat bij mij opeens ook niet
meer werkte, was mijn neus. Nu, 7 jaar later, merk ik dat ik zo nu en dan
weer iets kan ruiken. Maar als ik erge nekpijn heb, doet ook mijn
reukvermogen het niet. Dat is erg lastig als je b.v. rijst aan het koken
bent, en dan vergeet dat je dat aan het doen bent, wegloopt en niet ruikt
dat het aan het aanbranden is. Mijn hond komt me dan waarschuwen, dat de hele
keuken al blauw is en de rook komt de huiskamer al in. Heeft me ettelijke
pannen gekost. Rijst koken doe ik dus niet meer gewoon op de pit, maar in de
magnetron. Dan kan het tenminste niet meer aanbranden als ik het vergeten ben.
Minstens twee jaar geleden las ik van een andere WL patiënte, dat ze ook
haar stoelgang niet meer kon beheersen. Dat moet ook vreselijk zijn.
Groeten en het beste.
Freya.

Hi Antonia

I can imagine how much hard work it is chasing Max around. Nathan has a right sided weakness coupled with balance issues so it has taken some time for him to be able to stand on his own two feet (no pun intended!). You want them to walk but I was so afraid that Nathan would hurt himself as for a long time he didn't fall naturally, i.e. he didn't try to save himself. Things have got better though & hope that Max continues to improve.

How did you find out about the chickenpox inoculation? Is it something that you have instigated or did your gp offer you it?

Take care of yourself.

Georgina, mum to Nathan 3

I've just joined this group, thank you Fran for sending me the link.

Hi Georgina

There was a programme on telly apparently (Tonight with Trevor MacDonald) - I didn't see it but I heard about it. It was a study about the benefits of Eye-Q (Omega 3 & 6) on behaviour and attention.

I found a summary online which said:

Between September to December 2006, Connors parent rating scores on signs of Attention Deficit Hyperactivity Disorder (ADHD) showed an 18% improvement whilst teachers recorded a 9% improvement[8]. Parents noticed a reduction in aggression, temper tantrums, impulsivity, and hyperactivity within the home, whilst teachers reported improved concentration levels in the classroom[9]. On self tests children showed less difficulty with learning, increased attention levels and less hyperactivity and impulsivity.

All the pupils at Chineham Park Primary School are taking part in this unique project, where the Head teacher is hoping to improve SATS results. A focus group of nine pupils were chosen to complete the Test of Variables of Attention -Visual (TOVA)[10]. Tested at baseline, then three months later, the childrens' attention and impulse control levels were recorded. Based on pre-test scores, seven of the children tested had a score that would have suggested signs of ADHD while three had scores that were within the normal range. Post test scores indicated that out of the nine tested, only four remained within the ADHD classification and five had scores within the normal range.

These results reveal an improvement in impulsivity and concentration which suggests that the children were able to better manage their own behaviour. Considerable improvements in reading and writing skills were also observed.

"I suspect the improvements in learning, attention and behaviour that we have seen in the first three months at Chineham Park Primary School are largely due to the children taking the essential fatty acid supplement, eye q (TM) along with a multivitamin supplement since the changes in diet achieved in the first three months have been modest." says Nutritionist Patrick Holford from the Food for the Brain Foundation.

The full report is at http://www.prnewswire.co.uk/cgi/news/release?id=187521

I have tried to give Hannah Eye-Q and she hates it! I think they may have brought out more palatable forms since I last looked though! The one I bought just tasted of lemon flavoured oil - yuk!

I try and make sure Hannah has fish 2/3 times a week as well as plenty veg, olive oil etc She loves salmon and sweet potato wedges roasted in olive oil.

I notice a huge difference when she has something rubbish in her diet. The other day we went to the hospital and another mum gave her chocolate. Within an hour, her behaviour was wild and I am sure it was the sugar. She was hitting me in the face thinking it was funny and repeatedly sliding off her chair in a café and going rigid if I tried to put her back on. So, I am a hard Mum who gives my kids very little sugar and no packets, processed food or colours/additives!!

I'll send this reply to the other forum too incase anyone else is interested!

Donna, Mum to Hannah age 3 (PWS, SWS, Hemi March 06)

Just another opinion but we gave Luke fish oil of some sort and it made his
seizures worse.
No one has any idea why, so it may have been coincidence, but we stopped them
anyway.
Shelley

I'm thinking about introducing the omega 3 & 6 supplement to Nathan's
diet & just wondered if this is something anyone has experience of? I
am going to double check with the epilepsy liason nurse that it's safe
to give with his tegretol carb but just wanted your thoughts?
Thanks
Georgina, mum to Nathan, 3

Hoi,
nee hoor helemaal niet raar. Ook mijn libido is omlaag. Haaruitval, nagels
die scheuren. En ook mijn neus, is doorlopend vervelend, ik was doorlopend
verkouden, mijn holtes zaten dus helemaal vol, en zijn schoongemaakt. Ook
mijn neusbeen stond scheef en is rechtgezet. Jammer dat het niet te bewijzen
is dat het van het ongeluk was, ik ben er van overtuigd. Want daarvoor had ik
deze dingen niet.
Mijn stem is beschadigd, bij de pijnpoli en zo zijn er nog meer leuke dingen.
En dat naast de pijn in mijn en rug en been.
Dus nee hoor, veel verschijnselen, waar kennelijk geen bewijs voor te leveren
is dat het door het auto ongeluk komt, maar je weet zelf wel, wanneer klachten
zijn ontstaan.
Groetjes
Esther

Hi Donna
where in Scotland do you live? We stay there at least once a year
and I know there are other parents up there.
Lynn

Hi all
I use MSN or Windows Messenger to talk to my friends. If you use
either of these feel free to add me. If you don't use it you can
download it free from
http://messenger.msn.co.uk/Beta/Default.aspx
You have to set up a hotmail account if you don't have one but it
doesn't take long.
If you want to add me this is the address I use. lb1472@...
Lynn

Hi Karen,
I remember you from the "early days"- can't believe Christina is 21!
We sometimes have similar problems about symptoms and tend to put them
down as "Claire's mysteries" because no one seems able to explain them
Good to see you on the site
Trish

hi to everyone
great news about access on internet to be able to link with other
parents or young adults themselves with sturge-weber. My daughter is
21 and we still meet barriers about reasons for symptoms she is
experiencing. will be great to go on line and ask directly if anyone
experiences the same.
karen

I am not sure where I am replying too, or if I am doing this right, but here
goes.....
My son, Luke, is 16. He has SWS, epilepsy, hemiplegia, loss of vision in the
right field of both
eyes, thankfully no glaucoma, but very VERY challenging behaviour.
He had a hemispherectomy in 1993 when he was almost 3. He does still have
seizures, but
compared to the pre surgery days they are a walk in the park. His hemiplegia
and visual field
defects are as a result of his surgery.
Our major battle at the moment is trying to find a Post 16 placement for him.
His school
only takes up to 16 and both the local 6th form provisions have refused him
because of his
behaviour.
Would love to hear from anyone who has experience of Post 16 provision and
anyone at all
with a child with behaviour problems. Happy to chat to anyone really though and
if I can
help with any advice gained from our 16 years, just shout!!!
Regards
Shelley

Hi all,

It goes without saying we would love to get together with other families - I'm not sure I qualify as a 'younger member', but Finlay definately does! We are in Shropshire but don't mind travelling, Travelodge have some very reasonable rates if you can book in advance. If there is anything I can do to help please let me know.

Fran (mum to Finn, 5, SWS, PWS)
lb_uk_2k <lb_uk_2k@...

Hi
a friend and I were discussing getting together for a re-union sometime
with the people we knew when we first started the Sturge-Weber
Foundation. (That was in 1991). Is anybody interested in an informal
get together if we can arrange something? It would be nice to meet some
younger members. Not sure where it would be, it depends on where people
live and how easy it is to centralise it.

Alex has had years of laser treatment on and off. When it began it was
the tunable dye laser which didn't make much difference so we stopped.
When Alder hey got a new laser we started again, with Alex having to
spend a whole day at the hospital as he was having a general
anaesthetic. He hated waiting for his turn; as he was the oldest he
always went last, and he couldn't eat until it was over which was
usually around 5pm. We stopped again for a while and then went back as
an outpatient when he was older. It finally got to the point where the
treatment wasn't making a huge difference so we decided to call it a
day. If Alex decides he wants more later on we can go back to the GP
for a referral but Alex has never been concerned about how his
birthmark looked so it is his choice.
Most of the time Alex didn't have any problems, one time however his
face became really swollen around the eye but it went down after a few
days. His main hate was always having to be smothered in sun cream!

Hi Alex,

I met you 4 years ago at Alder Hey, when you, your mum and your sister very kindly visited my little boy on the ward one day. We had only just found out he had Sturge Weber, and meeting you was very helpful. He is nearly 5 now, and will soon be having his hemi surgery. How old were you when you had yours? Can you remember anything at all about that time, and do you think it was a good thing to have it done at a young age?

Fran (mum to Finlay, SWS, PWS, seizures)
challenge_alex <challenge_alex@...

My name is Alex, I am 19 and have SWS. If you have any questions feel
free to e-mail me.

I think an "informal" get together is a brilliant idea.
We're a family with a young woman of 28 who is quite severely disabled
by SW. Would like to hear from others in a similar situation to compare
notes and moan about adult services!

Hi there
My name is Donna and my 3 year old daughter Hannah has SWS. She had
laser treatment last Wednesday which seems to have blistered on her
chin so she is not very happy!!
Donna

Hi
a friend and I were discussing getting together for a re-union sometime
with the people we knew when we first started the Sturge-Weber
Foundation. (That was in 1991). Is anybody interested in an informal
get together if we can arrange something? It would be nice to meet some
younger members. Not sure where it would be, it depends on where people
live and how easy it is to centralise it.

What a great idea. The US site has been of real help but it will be
even better to meet new people from the UK. Thanks so much for setting
this up.
Georgina, mum to Nathan, 3, PWS, SWS, right sided weakness & epilepsy

Hello to everyone - I'm sure this is going to be a great help to lots
of people. I look forward to meeting lots of SW families in cyber-space
and in reality. Thankyou Lynn for starting it off.
Fran (mum to Finlay, nearly 5, SWS)

Excuse my stupid name as well- tried loads of different ones which
weren't available so this sums up how I felt! Hope we get lots of input!
Trish

Hello
welcome to the Sturge-Weber support group where you can find like
minded people. I hope you all find the support/friendship you need and
in turn support others.

Hoi Wouter,
Sorry, dat ik zo lang niets van me heb laten horen, maar je weet hoe dat
gaat, prioriteiten..
Pels, heb ik gezien mijn ervaringen niet zo'n hoge pet van op, maar ik hoor
ook andere verhalen, dus zoals bij alles is dit iets dat iedereen voor
zichzelf moet uitzoeken/ervaren.
Ik ben er in ieder geval raar weggegaan en ze hebben me nooit meer benaderd
voor een exit gesprek. Er kunnen natuurlijk dingen misgaan in de
communicatie en dat behandelingen toch niet geschikt waren voor mij, maar
dat vind ik toch weinig professioneel. Maar het is ook weer niet zo
belangrijk voor me dat ik er nu zelf achteraan ga.
Er zijn elementen geweest binnen het Pels traject waar ik wel iets aan gehad
heb, zoals de sessies met één van de fysio's die niets te maken hadden met
fysiotherapie, maar alles met omgaan met je beperkingen.
Ook de cursus persoonlijke effectiviteit was leerzaam en het contact met
degene die dit begeleidde, maar achteraf ben ik waarschijnlijk veel te lang
doorgegaan met de haptonomie, terwijl er veel te weinig vooruitgang in zat
en was ik er gewoon nog niet klaar voor om iets op te bouwen, ik moest nog
heel erg leren omgaan met het feit dat ik beperkingen heb en daar hebben ze
me eigenlijk niet echt mee geholpen.
Ook de fysiotraining, het eerste waarmee ze zijn gestart, is achteraf veel
te veel stimulatie geweest van spieren die al overbelast zijn. Het is wel
goed om te blijven bewegen, maar dat kan ook zonder juist die spiergroepen
specifiek te gaan belasten. Ik train nu nog altijd, maar ik ontzie mijn
schouder, nek en rug.
Pels doet geen medische onderzoeken en maakt geen foto's of wat dan ook.
Zelfs na twee jaar Pels ben ik er niet achter wie waarvoor verantwoordelijk
is, dus dat moet je aan iemand anders vragen.
Ik ben ambtenaar en ben door het uszo volledig arbeidsgeschikt verklaard,
ook na het bezwaar. Daarop heeft de arbo arts geadviseerd dat ik weer
arbeidsgeschikt ben, al stuurde hij wel aan op een ontslag. Ontslagen worden
zou mij echter geen uitkering hebben opgeleverd, omdat het een verwijtbaar
ontslag is. Mijn rechtsbijstandsverzekering heeft dit uitgezocht. Het
schijnt zo te zijn dat je als niet ambtenaar nog een mogelijkheid hebt om
een deal te sluiten, waarbij je ontslagen word en recht houd op WW. Bij
ambtenaren kan dat niet omdat wij een andersoortig dienstverband hebben. Ik
had dus de keuze om aan het werk te gaan en me weer ziek te melden etc. etc.
of ik kon het aanbod aannemen van vrijwillig ontslag, een aantal maanden
salaris en een outplacementtraject. Deze weg heb ik gekozen omdat dit de
meer positieve weg is. Inmiddels heb ik zoveel meer energie dat ik het wel
zie zitten om een baan te zoeken voor ongeveer 50% en ik heb geen zin om
mijn beperkte energie te steken in andere dingen dan dat.
Even voor je statistieken:
an Gemert therapie: met prisma in je brilleglazen kijken vergemakkelijken,
zodat je meer energie overhoudt voor andere dingen (heel in het kort), ik
ben er nog altijd mee bezig, moet eigenlijk elke dag een aantal uren een oog
afdekken, maar ik merk eigenlijk niet dat het verschil uitmaakt. Ik overweeg
steeds meer om er maar mee te stoppen. Het heeft me alleen wel een hap geld
gekost en dat heb ik zelf moeten betalen, dus gooi ik dat zomaar weg, of
moet ik toch maar doorzetten?? Twijfels alom.
dhr. Baart. Fysiotherapeut die werkt met magneten in combinatie met
accupuntuurplekken en energiebanen; absoluut erg vaag, maar na slechts 1
behandeling een wereld van verschil. Veel minder pijn en meer energie. Niet
dat je meteen de oude bent, je moet nog altijd goed op je grenzen letten en
die niet overschrijden, maar de grenzen worden wel opgerekt.
Shiatsu; ik zie dit als onderhoud van wat er is gebeurd bij dhr. Baart.
Daarbij leer ik daar beter mijn lichaam aanvoelen en ontspannen. In ieder
geval is het prettig en heeft het voor mij geen negatieve gevolgen.
Tai Chi; hiervoor geld hetzelfde als bij shiatsu. Het is een vorm van
bewegen die niet zo snel overbelasting veroorzaakt. Het enige dat mij wel
eens opbreekt is dat we te lang doorgaan. Ik zou het eigenlijk ook
regelmatig thuis moeten doen, maar dat lukt niet altijd even goed. Het idee
achter de taoistische tai chi is dat alle stromen in je lijf worden
gestimuleerd, energie, bloed, lymfestelsel, alles en daarmee het
zelfherstellend vermogen van het lichaam.
Fysiotraining; zoals ik hiervoor al heb aangegeven heeft dit voor mij op
zich het positieve effect van in beweging blijven, maar ik moet er wel voor
waken de overbelaste spieren in mijn nek en schouder niet teveel te
stimuleren, want dat heeft een averechts effect.
Je zegt dat een goede advocaat belangrijk is, nu ben ik wat sceptisch over
mijn kansen op een schadevergoeding dus ik heb me hier nog niet echt in
verdiept. Het hele gedoe is nu in handen van de rechtsbijstandsverzekering,
maar dat schiet niet echt op. Ik denk af en toe wel aan een andere advocaat,
maar heb de puf niet om dat uit te gaan zoeken. Heb jij toevallig nog een
tip? Ik wil er zelf eigenlijk niet zoveel energie aan besteden. Er zijn
belangrijkere dingen in het leven.
Nou, hopelijk heb ik hiermee je vragen beantwoord en jou en anderen
misschien ook aan wat bruikbare informatie geholpen.
Nu heb ik weer lang genoeg achter de computer gezeten, dus ik kap ermee.
OOk jij sterkte.
Petra.

Bij whiplash wordt regelmatig vanuit de natuurgeneeskunde glucosamine en
chondroitine geadviseerd voor hulp bij herstel. Ter info onderstaande
artikelen:
Wat is glucosamine en wat is de functie ervan?
Glucosamine komt van nature in het lichaam voor. Glucosamine is een
zogenaamd aminosuiker dat als bouwsteen dient voor belangrijke stoffen in
het menselijk lichaam (bijvoorbeeld collageen en hyaluronzuur). Deze stoffen
op hun beurt zijn essentieel voor de opbouw en onderhoud van kraakbeen, bot,
gewrichtskapsel, pezen en andere 'bindweefsels' en voor het in stand houden
van de gewrichtsvloeistof.
Wat is chondroïtine en wat is de functie ervan?
Chondroïtine is, net als glucosamine, een stof die van nature in het
menselijk lichaam voorkomt. Chondroitine is een onderdeel van een soort
sponsstructuur in het gewricht. Deze sponsstructuur geeft het
gewrichtskraakbeen de mogelijkheid schokken op te vangen. Daarnaast zorgt
het voor het vasthouden, afgeven en weer opnemen van de gewrichtsvloeistof
(synoviaalvocht). Deze regulatie van het synoviaalvocht zorgt voor een goede
afvoer van afvalstoffen en opname van voedingsstoffen voor het gewricht.
In tegenstelling tot wat veelal gedacht wordt, lijkt een chondroïtine
supplement het voornaamste deel van haar werking niet te ontlenen aan een
functie als bouwsteen zoals het lichaamseigen chondroïtine. Wetenschappers
hebben aangetoond dat van buitenaf toegediende chondroïtine de afbraak van
kraakbeen vermindert door schadelijke enzymen af te remmen. Daarnaast
stimuleert chondroïtine tegelijkertijd als een soort katalysator de opbouw
van een breed scala aan kraakbeencomponenten.
Voor meer details hierover verwijzen wij u naar de wetenschappelijke
samenvattingen.
Heb ik glucosamine nodig?
Als u last heeft van gewrichtsslijtage (artrose) of artritis, dan kunt u
baat hebben bij glucosamine suppletie. Glucosamine kan ook bescherming
bieden aan mensen die een verhoogd risico lopen gewrichtsslijtage te
ontwikkelen. Een verhoogd risico hebben onder andere ouderen, mensen met
overgewicht en sporters.
Heb ik chondroïtine nodig?
Net als glucosamine wordt chondroïtine gebruikt tegen artrose/artritis. Uit
wetenschappelijke studies blijkt dat de effectiviteit ongeveer gelijk is aan
die van glucosamine.
Veel mensen bereiken met het innemen van alleen glucosamine voldoende
pijnvermindering en functieverbetering in de gewrichten. In zo'n situatie is
aanvulling met chondroïtine niet absoluut noodzakelijk. Bent u echter van
mening dat u met het gebruik van glucosamine onvoldoende resultaat behaalt,
dan is het een goed idee om naast glucosamine ook chondroïtine te gebruiken.
Indien de kosten geen bezwaar zijn, kunt u het best direct beginnen met
zowel glucosamine als chondroïtine suppletie. Wetenschappers veronderstellen
dat deze combinatie de opbouw van kraakbeen sterker stimuleert. Daarnaast
remt chondroïtine ook nog eens de afbraak van kraakbeen.
Welke effecten kan ik verwachten bij gebruik van glucosamine?
Van glucosamine zijn in wetenschappelijke studies de volgende effecten
aangetoond:
- Vermindering van gewrichtspijn.
- Verbetering van de gewrichtsfunctionaliteit.
- Afremmen en zelfs stoppen van verdere kraakbeenafbraak.
- Afname van ontstekingsverschijnselen.
N.B. Voedingssupplementen ontlenen hun werking aan het ondersteunen van
lichaamsfuncties. Ieder lichaam is uniek en de mate waarin een supplement
effect heeft zal daarom per persoon verschillen. Dit is de reden dat de
bovengenoemde effecten niet gegarandeerd kunnen worden.
Wij schatten dat ongeveer 50% van onze klanten goede resultaten behaalt met
het gebruik van glucosamine. Voor de ervaringen van enkele klanten met
glucosamine kunt u deze link aanklikken.
Welke effecten kan ik verwachten bij gebruik van chondroïtine?
De effecten van chondroïtine zijn ongeveer gelijk aan die van glucosamine.
De volgende effecten zijn aangetoond in wetenschappelijke studies:
- Vermindering van gewrichtspijn.
- Verbetering van de gewrichtsfunctionaliteit.
- Afname van ontstekingsverschijnselen.
Aanvulling van glucosamine met chondroïtine kan de werking versterken en de
kans op succes vergroten.
N.B. Voedingssupplementen ontlenen hun werking aan het ondersteunen van
lichaamsfuncties. Ieder lichaam is uniek en de mate waarin een supplement
effect heeft zal daarom per persoon verschillen. Dit is de reden dat de
bovengenoemde effecten niet gegarandeerd kunnen worden.
Wij kunnen nog geen informatie geven over het succespercentage van
chondroïtine in combinatie met glucosamine. Hiervoor hebben wij nog niet
voldoende feedback van onze klanten ontvangen. (De verkoop van chondroïtine
is gestart in mei 2003).
Hoe snel kan ik resultaten verwachten?
Bij gebruik van glucosamine merken sommige mensen de eerste verbeteringen al
na een week. Over het algemeen duurt het echter zo'n 3 tot 4 weken voor het
eerste duidelijk resultaat merkbaar is. Na 3 maanden is een goede
beoordeling van de werking mogelijk.
De werking van chondroïtine wordt over het algemeen minder snel opgemerkt.
Duidelijke verbeteringen kunnen al snel 1 tot 2 maanden op zich laten
wachten. Een goede beoordeling van de werking zou na 6 maanden mogelijk
moeten zijn.
Hoe lang moet/mag ik glucosamine en/of chondroïtine gebruiken?
Glucosamine en chondroïtine ondersteunen het lichaam bij het herstel van
kraakbeen wanneer het lichaam dit zelf niet meer in voldoende mate kan.
Zonder de ondersteuning van één of beide supplementen is de kans groter dat
de klachten na verloop van tijd terugkeren. Bij ouderen is dit eerder het
geval dan bijvoorbeeld bij sporters. Veel ouderen gebruiken met name
glucosamine zonder onderbrekingen.
Onderzoek naar langdurig gebruik van glucosamine (3 jaar) heeft geen
nadelige werking naar voren gebracht. Ook chondroïtine is veilig bevonden
tot in ieder geval 1 jaar continu gebruik. Het gebruik gedurende nog langere
perioden is niet onderzocht op veiligheid. Er zijn echter geen aanwijzingen
dat onafgebroken gebruik van deze supplementen meer bijwerkingen zou geven
dan de lichte bijwerkingen die sommige mensen ervaren bij het eerste
gebruik.
Glucosamine en chondroïtine zijn al ruim 20 jaar verkrijgbaar als
voedingssupplement. Afgezien van een enkele allergische reactie zijn geen
ernstige bijwerkingen waargenomen.
Zijn glucosamine en chondroïtine medicijnen?
Nee, glucosamine en chondroïtine worden geclassificeerd als
voedingssupplementen.
Groeit kraakbeen terug bij gebruik van glucosamine en chondroïtine?
Glucosamine kan verdere afbraak van het kraakbeen afremmen of zelfs stoppen
(gemeten in een recente studie over een periode van 3 jaar). Ook zijn er
aanwijzingen dat kraakbeen gladder wordt bij gebruik van glucosamine. Er is
echter nog geen studie geweest die regeneratie van kraakbeen weefsel heeft
aangetoond.
Er zijn wetenschappers die suggereren dat de combinatie van glucosamine en
chondroïtine dit wel zou kunnen. Wij hopen u hier in de toekomst meer
informatie over te kunnen geven.
Helpen glucosamine en chondroïtine tegen rugpijn?
Rugklachten zijn over het algemeen zeer complex van aard. Meerdere factoren
kunnen een rol spelen bij het ontstaan ervan. Indien uw rugpijn (deels)
veroorzaakt wordt door kraakbeen degeneratie kan glucosamine en/of
chondroïtine suppletie effect hebben.
Helpen glucosamine en chondroïtine bij reumatische aandoeningen?
Reuma is een verzamelnaam voor aandoeningen aan het bewegingsapparaat.
Artrose en artritis zijn de twee meest voorkomende vormen van reuma.
Wetenschappelijke studies onderschrijven de werking van glucosamine en
chondroïtine bij artrose en artritis. Voor reumatoïde artritis (als gevolg
van een auto-immuun reactie) zijn glucosamine en chondroïtine minder
werkzaam.
In wetenschappelijke studies zijn voor de behandeling van reumatoïde
artritis (RA) wel successen behaald met toevoeging van bepaalde vetzuren aan
het dieet. Deze vetzuren worden met name gevonden in vette vis. Voor mensen
met RA zou het tweemaal per week eten van vette vis al resulaten geven
(liefst niet te ver verhitten, gestoomd is prima). Vermindering van de
inname van verzadigde vetzuren uit vlees en zuivel zou ook overwogen moeten
worden.
Wat zijn de mogelijke bijwerkingen van glucosamine en chondroïtine?
Klik hier voor meer informatie over bijwerkingen en medicijn interacties.
Zijn er interacties met medicijnen te verwachten bij het gebruik van
glucosamine en/of chondroïtine?
Klik hier voor meer informatie over bijwerkingen en medicijn interacties.
Kan ik glucosamine en/of chondroïtine gebruiken tijdens de zwangerschap?
Gebruik glucosamine en chondroïtine niet als u zwanger bent of een
zwangerschapswens heeft. Beide supplementen hebben een zeer gunstig
veiligheidsprofiel maar er zijn geen studies verricht die een eventuele
nadelige invloed tijdens de zwangerschap kunnen uitsluiten.
Wat is het verschil tussen glucosamine sulfaat en glucosamine HCl
(hydrochloride)?
Glucosamine sulfaat is de meest gebruikte vorm van glucosamine. Ook het
meeste onderzoek naar glucosamine wordt gedaan met het sulfaat type.
Vergelijkend onderzoek tussen de twee vormen van glucosamine is echter niet
uitgevoerd. In de praktijk lijkt glucosamine sulfaat iets effectiever dan
glucosamine hydrochloride bij een gelijke dosering.
Waarom is Glucosamine.com zoveel goedkoper dan andere merken?
Glucosamine.com heeft als voornaamste doelstelling een betaalbaar
glucosamine supplement aan te bieden. Betaalbaar is in onze ogen een prijs
waarbij iedereen het zich kan veroorloven dit voedingssupplement op een
continue basis te gebruiken. Recent onderzoek maakt namelijk duidelijk dat
het continue gebruik van glucosamine gedurende meerdere jaren achtereen een
veilige en effectieve methode is om uw kraakbeen te beschermen.
Vanuit het gegeven van langdurig gebruik van glucosamine door de meesten van
onze klanten, is besloten om alleen voordelige grootverpakkingen te
verkopen. Dit scheelt veel in de prijs van het product.
Door de grote effectiviteit van glucosamine is het ook niet nodig om zelf
reclame te maken. Wij zijn heel blij verrast door de vele mond-tot-mond
reclame van klanten en therapeuten.
Verder zijn de operationele kosten van Glucosamine.com als internetbedrijf
veel lager dan die van gebruikelijke winkels.
Al dit voordeel steken wij niet in eigen zak maar halen wij af van de prijs
van ons product. Zo krijgt u hoogwaardige glucosamine voor een lage prijs.
In het verleden las ik op deze website dat er twijfels waren over de
effectiviteit van chondroïtine. Hoe zit het daarmee?
Uit wetenschappelijk onderzoek is naar voren gekomen dat chondroïtine slecht
wordt opgenomen door het menselijk lichaam. Terwijl glucosamine voor 90%
wordt opgenomen, bedraagt volgens onderzoek de absorptie van chondroïtine
slechts 10-20%. Dit gaf veel discussie over het nut van chondroïtine
supplementen.
Tot voor kort veronderstelden veel wetenschappers dat chondroïtine een rol
vervult die lijkt op die van glucosamine; een bouwsteen voor kraakbeen. Het
leek dus onverstandig om het dure chondroïtine te gebruiken terwijl het
goedkopere glucosamine hetzelfde doet en beter wordt opgenomen. Glucosamine
zou zelfs door kraakbeencellen gebruikt kunnen worden als bouwsteen voor
chondroïtine.
Nu blijkt echter dat de aanwezigheid in het lichaam van chondroïtine die van
buitenaf (exogeen) is toegediend een regulerende functie vervult. Exogene
chondroïtine geeft een soort signaal waardoor het kraakbeen aangezet wordt
tot de opbouw van kraakbeencomponenten. Daarnaast blokkeert exogene
chondroïtine kraakbeenafbrekende enzymen.
Omdat het niet of nauwelijks als bouwmateriaal gebruikt wordt is minder
chondroïtine nodig om effectief haar werk te doen. Dit maakt het mogelijk,
dat met een opname van slechts 10-20%, uitstekende resulaten behaald worden.

Hallo allemaal,
Tot onze spijt hebben wij moeten besluiten om ons lidmaatschap als
medewerker bij Whiplash Internetwerken te beëindigen, omdat er binnen de
samenwerking dusdanige meningsverschillen zijn dat een verdere samenwerking,
voor ondergetekenden, niet meer mogelijk is.
Indien er vragen zijn zijn wij uiteraard bereid om hier privé antwoord op te
geven.
Ariënne Gijsen
Carla Joziasse
Joop van Pruijssen