Kneeboard Surfing USA Community Forum

Fingers crossed buddy. Carbemazepine's tried and tested with epilepsy as I'm sure you've been told so it sounds very promising.

Really hope it all goes well for ya.

G

Prayers out for your son and your family.

Hey Tomway,

Hope all's well with Patrick! I'm not a physician but a clinical pharmacist (doctorate in pharmacy). In the US pharmacy is very clinical and patient oriented and I've worked closely with MDs for my whole career. In the US, in teaching hospitals (and other hospitals/clinics), pharmacists are involved in dosing drugs that are dosed based on drug levels (or at least helping with interpretation and dosing). The field is pharmacokinetics (PK) and is quite fun. I'm not involved on a daily basis with pediatrics but I have colleague friends who do pediatric PK all of the time and I can check with them as needed for specific questions.

Carbamazepine is an effective drug and that's the range you target. But, you target higher if seizures develop on a dose that gives levels at the lower end. Just send me a PM if you have any questions

I'm a little gun shy of shallow, draining lefts right now. Last September I rode too long in the barrel on a low tide morning at Blacks and as my board got sucked up the face I headplanted on my forehead right into the sand. Had a big stinger down my L arm and eventually an MRI that was clear but the numbness is slow to resolve. Yesterday I wiped out at the end of a racy wave (the lip hit my inside rail and I flew off the front) and as I hit it tweaked my neck a bit and I had another stinger ...that got better as I paddled out again. But, I've never been to Indo so it would be fun meet your family and have you show me the long racy lefts that aren't quite so shallow

Brad

I feel a bit embarrassed making this request on this forum, but families like my own need the help of as many people as possible.

Click here to help: http://ahckids.org/fundraisers/vivint-gives-back/

This is why I'm asking:

I can't believe it's almost 3 years since my son Patrick had his first 'seizures'. At the time many of you gave your support in words and information and both my wife and I continue to really appreciate that.

It took months to find out what was wrong with our little boy. It turned out not to be epilepsy as we had first thought, but a massively rare condition called Alternating Hemiplegia in Childhood (AHC).

About AHC and Patrick:
It emerges in childhood but lasts forever.
It causes temporary paralysis on one (hemiparesis) or both (quadraplegia) sides of the body.
The paralysis can last anywhere from hours to weeks (Pat's worst lasted a month and a half).
The worst attacks are tonic - that means Pat's whole body cramps up tight until you can hear his joints cracking. It's excruciatingly painful for him.
The condition causes progressive and debilitating brain damage. At 3 Pat can walk and speak a few words, but as he grows older he may well lose these skills.
There is no effective preventative medication and no cure.
Currently there is no known cause.

The attacks happen with or without trigger situations, but a major trigger is submersion in water... so Pat will never be able to experience riding waves.

There could be a cure out there, but the problem is that there are only a few hundred known cases in the world. No drug company or university will pour money in to research for so little future return.

However, the AHC Foundation in the U.S. are bidding for a grant from VIVINT in order to complete total DNA mapping and analysis of 3 AHC kids. This could be the first step toward helping children like Pat.

In order to win the grant, we need to raise votes. If you click the link I gave there are instructions on how to do this. You can vote once every day through facebook.

Thanks for reading this. Please pass this on to as many people as possible. Here's the link again:

http://ahckids.org/fundraisers/vivint-gives-back/

Tom, Lene and Patrick

Done mate,

and no need for the embarrassment.

Board looks insane to .

thanks for telling us about this and giving us something we can do...

Tom
I signed the petition through my wifes facebook and we will continue until the time frame is over.
I'll talk to my wife who is a nurse practioner about your sons condition to learn more about it
so sorry to hear about this
and I hope and pray for positive results for patrick lene and you

Geez mate don't even think about being embarrassed, I will get the whole family to vote daily and that will probably cause a melt down of the system!!!
Best wishes to you, your wife and young Patrick, feeling for you, Grant.

Aloha mate,

We will post to all we know and ramp up the vote. Our prayers and strenght are for your family. -scott

Ross, Scott, Tom, Grant and -scott, thank you

We need alot of votes, but I've just enlisted 100 or so teachers from my school so if everyone remembers to vote each day we can catch up quick I think.

Ok you cyber "surfing" freaks: if you are as limited in your pc skills as I am , then do what I did, get your kids ( who can ) to get this going on a massive scale. All the "friends" on fb, twitter, or wateva it is, they can make it happen. OK.... all the big shots with 750+ "friends" on the social sites, tell them this is a call to action. If can ...then please do. -s

Tomway I can only imagine the heartbreak you must be dealing with every day.

Helping in the way you've asked is such a simple matter I'm sure nobody here would decline the chance to do it.

Prayers, best wishes and a big hug to young Patrick from us here on the Goldie.

Hi Tom and Lene and Patrick youve got my vote i may need" go to Johny" here to show me how and will pass the word to all and sundry

Nothing really to say but vote now and vote every day, n pass the word .Just wanted to keep this on the topic list
Tom is one of natures gentlemen a relative grommet who s passion is his family and kneeboard surfing
If 1 person can tell 10 and the 10 tell 10 who knows get on it guys make it happen coz without guys like Tom what are we
Take a few minutes out of your day to vote it could make a difference
DO IT NOW
Please and thank you

Thanks again all of you who are voting to help Patrick and for passing on the word to others. Pat's been super healthy for almost a week now which coincides with all the support we've been getting with the voting - must be all the good karma coming this way.

Steve, just did 3 days down the beach and got pretty skunked. Absolutely howling winds and stormy seas and none of the regular spots were holding it. Only a handful of waves ridden but Mas Dave did get one of the sickest right barrels I've ever seen at a heaving right; masterful tube riding

Hopefully the winds will settle in the next week or so. How's bali been?