Kneeboard Surfing USA Community Forum

Getting a solid diagnosis is a big positive step!

Tomway- I have three sons so I can imagine what you are going thru. Just remeber that young children are very resilent. With luck, your son will out grow this ordeal and never even remember it. Likely he will be a stud and surf better than you ever have.

Well said, Tom.

Tomway,
Thanks for the update! I concur with Tom and Scott. Let's hope this plan is the one that gets him on the road to health and safety so he can enjoy his toddlerhood that's just around the corner

Glad you got clear answer from the doctors. Exactly the right choice, in not messing around and getting over to Singapore in a hurry. Grahame, and I and our families send our best regards and wishes from Jakarta.

Expecting a great recovery for young Patrick!


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Tom Im sorry to hear about your sons stroke
I hope he has a full recovery
we will pray for him
tom

Thanks for the update. I hope that it's only a matter of time before he's running riot thru your house driving everyone crazy (as all boy's should)

Hi Tom and Lene

Hope you have a great update for everyone on Patrick?

Hi Doc, still in Singapore but hopefully leaving on Friday. Things have been up and down. Pat seemed to be responding to the meds and by the end of last week was moving around and causing havoc as usual. We were due to fly out Monday after some final blood test at the hospital.

Just as we got into the hospital lobby, though, Patrick had a massive seizure that just went on and on. His doctor was there with in minutes and because he wasn't snapping out of it they knocked him out with drugs and dosed him up with more anti-epiletics. He slept for a while, then woke up and had another seizure. A really really horrible day for all of us as he was so confused, in pain, and being jabbed with needles whenever he was conscious. This time he had weakness, but not full paralysis on his left side.

They've upped his med dosages, and put it down to the levels not being 'therapeutic' yet - they need more time. Last 2 days he's been fine, and we got out of hospital yesterday. Now it's just fingers crossed, if the meds can control the seizures then he should be able to grow up and develop and live a normal life. If they don't... then Indonesia probably isn't the best place for us to be living and we'll have think about our future pretty seriously.

Thanks again to everyone for the support, and thanks Don for giving us a place to vent to like-minded souls. Writing this sh&t out is helping me get my head round it too.

Tom,
Thanks for the update. What a harrowing experience to go through. I'm glad things seem stable at the moment and if the docs are confident that his diagnosis is correct and treatment plan is sound, then the upward adjustment of his med(s) is appropriate. Many antiseizure meds have a normal therapeutic range that can be checked with blood tests. The range is that which most people will find control of their seizures. But, some need to have the levels pushed towards the higher end of the range to achieve control. The goal of course is to be seizure free. With higher doses, and drug levels, patients may have more side effects but fortunately the adjustment phase is limited and most people do fine. There are many antiseizure meds available and sometimes combination therapy is needed but that's ok as long as you get complete control. All you can do is keep giving doses on schedule, monitor for side effects, plan for early refills to insure no interruptions in dosing, keep an open line of communication with your physician, and keep f/u appts so levels can be checked. As Pat grows and gets bigger it's conceivable further adjustments may be needed.
Best of luck! Brad

tomway - Hi. I have been following these posts and sending prayers your way even though I do not know you. What an absolutely horrific thing for your family to have to go through. My heart hurts every time I read about an innocent child having to suffer. Fortunately children are far more resilient than us adults, which is a blessing. What I got from your last update is that the timing and circumstances of Pat's seizure upon arriving at the hospital suggests that the stress of just being there may have been a/the trigger? Even though he is a child, there is no doubt in my mind that somewhere in his little body he associates a hospital with pain. May be worth asking your doctor about to see if there is anything that can be done to reduce Pat's stress level prior to going to a hospital? Just a thought.
Your family is in my prayers. Godspeed!

Thanks so very much for the posting and the update on Patrick and you. I am so sorry for the set backs, and the stress on your selves and the family must be incredible.

Keep positive, optimistic. Seriously remember we are all with you on this. I realize there will be some tough decisions financially, country, life style and all coming up on you at a time that is not favorable for decision making.

Let me know what we can do for you, and if we can help out in any way.. I will be traveling for the next couple weeks

Yes, Tom, thanks for the update, as difficult as it sounds. Watching your child "go through it" is such a harrowing and draining experience.

Glad for SouthpeakBrad's insights as a medical professional.

Tom mate mine and my family's thoughts are with you and your's.

My son has Type 1 diabetes and was diagnosed at 2 so I can empathise to some degree but tough as that is on him and us as parents, it doesn't compare to this, but I know the emotions you are going through right now, the sense of helplessness as your world turns upside down. This story has really touched me.

On a positive side, epilepsy can be hard to get a grip on but can be controlled in the majority of cases.

I'll be thinking of you mate and really do hope you get some stability soon so you can all start to adjust and get on with your lives.

Cheers

G

Back home in Java now, and the smell of kretek cigarettes and ripe durians as we drove home from the airport was very welcoming



Hey Brad, thanks for your message - it's very comforting to get info and confirmation on this from someone in the west! The drug Pat's on now is carbamazepine and the last blood test just before we left showed 4.7mg in his blood which is apparently in the therapeutic range (4-12mg) but could be higher. Problem is, it doesn't seem we can get the necessary blood test in east java, so we're going to have to find a work around for that somehow to keep his levels in check. So you're a doctor, that's handy!... there's a ridiculously shallow left barrel I've been surfing recently that could do with a doctor near by Let me know if you're ever passing through indo

Thanks also Grayman, and everyone else who has children and relates to this. Kids, eh?!

KED, not sure if trauma can bring on a seizure? Actually, he seemed quite happy in the hospital most of the time (except for that day) and he was doted on by all the nurses - but then again who knows what's going through a babies mind? It's worth noting for the future...

Hopefully this is my last report, and Patrick will be able to get on with his life and come to love this wonderful country as much as I do. Please drop us a pm if you're in the neighbourhood, it's always great catching up with ksusa members for a surf here.

Tom, Darlene, Patrick