Sturge-Weber syndrome
- Thread starter _wb_
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skeezix
Internal Development
This is really ahrd news; no diea what to say, but I hope you are strong.. your little one will need that.
It might go okay.. theres those rare cases where it turns out okay; but sometimes theres no up-side .. the treatment where they remove half the brain, thats freaking terrifying.. but at least one fellow turned out smarter than average despite that.
In the end though... even if the child has limited use of parts of the body or other problems, she'll need your strength; I can't imagine seeing her now, wiggling around normally, worrying about what Could Be. It may well be a hard time, but the real life upside is still there.. she's your daughter, she will bring joy to your heart; children have amazing strength and resilience, the strongest determination for life there is. She'll make it, and she will smile up at you, and you can be there, and there will be the strongest of bonds. Your lives will be rewarding all the same. It may not be what you had expected (what is?), it may be hard as hell, it'll certainly be emotionalyl challenging.. but dont' let it make you bitter, try to remember the smiles as they come.
A buddy of mine got cancer and died way too young; he didn't gripe in public much, but he griped in a private little blog (which is still up, sort of creepy.) The "I'm still here" blog... anyway, he used to gripe over 'why is it when I go to the cancer clinic, I'm surrounded by 80 year olds; its not fair, they got their whole lives..'; heart breaking. But on the other side, he got his life, short as it was, and enjoyed it, and lived it, and will be remembered for his joy.
Give it your all, our hearts are with you.
jeff
It might go okay.. theres those rare cases where it turns out okay; but sometimes theres no up-side .. the treatment where they remove half the brain, thats freaking terrifying.. but at least one fellow turned out smarter than average despite that.
In the end though... even if the child has limited use of parts of the body or other problems, she'll need your strength; I can't imagine seeing her now, wiggling around normally, worrying about what Could Be. It may well be a hard time, but the real life upside is still there.. she's your daughter, she will bring joy to your heart; children have amazing strength and resilience, the strongest determination for life there is. She'll make it, and she will smile up at you, and you can be there, and there will be the strongest of bonds. Your lives will be rewarding all the same. It may not be what you had expected (what is?), it may be hard as hell, it'll certainly be emotionalyl challenging.. but dont' let it make you bitter, try to remember the smiles as they come.
A buddy of mine got cancer and died way too young; he didn't gripe in public much, but he griped in a private little blog (which is still up, sort of creepy.) The "I'm still here" blog... anyway, he used to gripe over 'why is it when I go to the cancer clinic, I'm surrounded by 80 year olds; its not fair, they got their whole lives..'; heart breaking. But on the other side, he got his life, short as it was, and enjoyed it, and lived it, and will be remembered for his joy.
Give it your all, our hearts are with you.
jeff
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I thought this might be of interest to _wb_ or maybe just anyone, its an article about a local girl with the same condition:
http://www.northwichguardian.co.uk/news/10506687.Wear_white_for_Sturge_Weber_this_Thursday/
http://www.northwichguardian.co.uk/news/10506687.Wear_white_for_Sturge_Weber_this_Thursday/
Exophase
Nothing good will ever come of Exophase.
I'm sorry to hear this _wb_, and sorry I didn't see this thread sooner 
I'm sure it has been very stressful for you and your wife not knowing what will really happen from here. But I hope Lola will be one of the luckier ones.
I'm sure it has been very stressful for you and your wife not knowing what will really happen from here. But I hope Lola will be one of the luckier ones.
Everything is still OK with Lola at the moment, so we're enjoying the good times while they last (hopefully forever)
iprice
Certified Guru
Really sorry to hear this news _wb_
At least everything is OK for now and hopefully the future won't be as bad as you obviously fear.
She's a little cracker and full of life by the look of things
BTW My First Linux console?
At least everything is OK for now and hopefully the future won't be as bad as you obviously fear.
She's a little cracker and full of life by the look of things
BTW My First Linux console?
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skeezix
Internal Development
I really hate that you have to make a decision, before knowing what the future holds; that earlier is better.
It is so goddamned unfair.
Living every moment now, that at least is good.
jeff
It is so goddamned unfair.
Living every moment now, that at least is good.
jeff
Update:
Lola is now almost 2 (well, she'll be 2 in September), and her brain is still OK -- we recently did a checkup EEG which was perfectly normal. No epilepsy yet, which is a very good sign because even though about 80% of diagnosed Sturge-Weber patients will get epilepsy (20% are "lucky"), 75% of those (so 60% of the total) start to get it in the first year, and 86% (~69% of the total) get it before they're 2 years old. So the chance that she'll get epileptic seizures is dropping every day, from ~80% at the point of the diagnosis to maybe 15% or so today.
She does have the glaucoma problem though, but it can be treated just fine with medication (eye drops) to keep the eye pressure under control, so it's just something we have to check regularly, but no major problem.
I'm now the webmaster of the Dutch patient organization for (parents of) Sturge-Weber patients (and portwine stains in general), which is also active in Dutch-speaking Belgium.
http://www.nvwsws.org/
Also the laser therapy is working very well. She now had 7 sessions (next session is next week). Here are some pictures: the one on the left is before the first treatment, the middle one is just after the first treatment (it takes two weeks or so to heal, the laser basically burns the portwine stain away, which are excess capillary vessels), the one on the right is a few weeks after the 4th treatment session.
Lola is now almost 2 (well, she'll be 2 in September), and her brain is still OK -- we recently did a checkup EEG which was perfectly normal. No epilepsy yet, which is a very good sign because even though about 80% of diagnosed Sturge-Weber patients will get epilepsy (20% are "lucky"), 75% of those (so 60% of the total) start to get it in the first year, and 86% (~69% of the total) get it before they're 2 years old. So the chance that she'll get epileptic seizures is dropping every day, from ~80% at the point of the diagnosis to maybe 15% or so today.
She does have the glaucoma problem though, but it can be treated just fine with medication (eye drops) to keep the eye pressure under control, so it's just something we have to check regularly, but no major problem.
I'm now the webmaster of the Dutch patient organization for (parents of) Sturge-Weber patients (and portwine stains in general), which is also active in Dutch-speaking Belgium.
http://www.nvwsws.org/
Also the laser therapy is working very well. She now had 7 sessions (next session is next week). Here are some pictures: the one on the left is before the first treatment, the middle one is just after the first treatment (it takes two weeks or so to heal, the laser basically burns the portwine stain away, which are excess capillary vessels), the one on the right is a few weeks after the 4th treatment session.
iprice
Certified Guru
Wow. Excellent news!
She's a little cracker
She's a little cracker
It sounds like it's going quite well against all odds, great stuff.
Interesting to see the results of those laser treatments, do they have some medical effect or is it just cosmetic and is it at least in part financially covered in Belgium?
Interesting to see the results of those laser treatments, do they have some medical effect or is it just cosmetic and is it at least in part financially covered in Belgium?
It's mostly "just cosmetic", though with a portwine stain like that, covering half your face, "just cosmetic" is probably a bit of an understatement. Potential psychological harm from bullying etc could be a very real issue. It's also a bit medical since the portwine stain does cause the skin to thicken slightly over time, which can cause some issues (but probably still will, because the laser only reaches the skin, not inside, and the portwine stain is not just in the skin, that's the whole problem: it's also in the brain, and also for example in the mouth which could mean a lot of visits to the dentist/orthodontist in the future because of asymmetries (e.g. teeth appear first on the portwine stain side, I think because there's more blood there so it develops a bit faster).
The first 8 treatments are financially covered in Belgium. So until now we didn't have to pay a lot ourselves yet. It will start to become more expensive soon though. The plan is to have about 5-6 treatments per year (you have to wait 2 months™ between treatments, no kidding), until there is no more improvement. They don't know in advance when that point is reached: some people reach that point after 10 treatments or earlier, some have had more than 30 and are still going. I don't know how much we'll have to pay, but it's not cheap. I think you pay per square centimeter of treated skin (so the older they get, the more expensive it becomes because the stain grows just like everything else), and I think it could be something like 500 EUR per treatment for a stain this size, but I'm not sure. We'll have the 8th treatment next week, I'll have to ask how much the next session is going to cost us and if they have any idea of how many more treatments would have an effect.
Neelix
Insecticidal Maniac
How close to normal colouring does this type of treatment normally achieve before further treatments become ineffective? I must say she's looking beautiful in that third shot. Could the treatments actually give her close to normal colour?
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Great news indeed!
thatgui
Advanced Member
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Do these treatments build upon the previous ones ? I am asking because I am wondering, why you already started with the treatments. If I were in that situation I probably would have waited till looks are more important to her then now, especially if it is likely that the number of treatments is limited (kind of like in games where you get very special ammo, that you keep till the end as you wait for a situation where you would really need them, except that you do use it eventually here). Glad to hear that the chance for getting seizures is lowering by the minute, keep my fingers crossed.
You will never be, even if you are one already
Bosbeetle
Terminally lost
....I am not willing to be a parent.
Though stuff _wb_ hope you have successes fighting this decease and that you can enjoy time with your daughter for a very long period!
ekianjo
Hardcore Member
Pretty impressive results for the laser therapy. Is the treatment permanent in terms of efficacy ?
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