Assunta - Messed up!

It never ceases to amaze me how commercial healthcare has become.

When I was 15, I needed a stupid letter for my SRP (yes, it wasn't PMR, it was that long ago...) I asked my eye doctor for a letter, not saying who it is, but he's based in SS2 :P bugger charged me tonnes to just get a letter.

Now, the relevance to Alden?? Read on...

Then the "specialists" pediatricians at Assunta Hospital, there were two of them, failed to diagnose Alden's Goldenhar Syndrome aka Oculo Auriculo Vertebral Spectrum.

That time, they just said, "Not to worry, the whitish fatty tissue in the right eye will go away after some time, don't worry about the skin tags at the ears..." DUH! Those are the two most tell tale sign of Goldenhar Syndrome. From my research, Goldenhar Syndrome or GS can affect:

• Ears and hearing
• Mouth
• Spine & Other bones
• Liver
• Heart
• Some mental retardation

Symptoms

Typical telltale symptoms of Goldenhar Syndrome include:

• facial deformities - one side of face/mouth is smaller or the face is significantly dissimilar on both sides
• lower jaw bones underdeveloped
• cleft palate
• malformed/deformed outer ears (skin tags) with cartilage (soft bone) in them
• eye abnormalities - cyst-like formation on the eyeballs, deformed eye, deformed eye lids, missing eye ... sight problems

Goldenhar Syndrome has several degrees of severity and at present, Alden case is considered very mild.

Granted those afflicted with Goldenhar Syndrome usually get affected more on one side of the face than the other. Some even have missing lower jaws, but most will have very deformed ears some may not have any ears at all.

Research References & Helpful Links

I found an excellent support group online for Goldenhar Syndrome located at: http://groups.yahoo.com/group/goldenharsyndrome for those parents who have children with the condition, I recommend joining the group. I found that Alden's case wasn't as bad after reading and looking at the many posts and photos of the children they have there. My heart goes out to the kids there. In the US, they have excellent care for these special kids, in Malaysia we're pretty much left to be on our own!

To save the hopefully many parents that will look at my blog, I've listed some sites I hope they will find useful that I've come across during my research for Alden's case:

1. What's Goldenhar Syndrome? Treatments & Support Groups - Very Succinct straight to the point resource.
2. Detailed (lots of medical jargon) Symptoms of Goldenhar Syndrome
3. The research just wouldn't be proper without the Wikipedia Reference!
4. Yahoo! Group: Goldenhar Syndrome, you'd need to apply to join, but it's worth it. I personally found strength in looking at the posts and stories within the group.

With proper treatment and remedial action while taken early can help those who are afflicted with GS to lead pretty much normal lives, although they may have to do undergo a lot of facial reconstruction and operations.

Do comment if you found this article helpful, I just felt the need to spread the word as some of these pediatricians just seem to care about their "future appointments" rather than referring us to some one else who can really help! Assunta Hospital SUCKS!

Carpal Tunnel Syndrome

Well, it's official, I now suffer from moderate Carpal Tunnel Syndrome.

What tunnel? Carpal tunnel. Basically, Carpal Tunnel Syndrom is an affliction brought about from repetitive movements of the hand. As you can guess mine comes from hacking away at the computer for hours on end. So the median nerve (it's the nerve that moves some of the fingers in the hand) gets inflamed, and starts to swell, after awhile it has a nice contact with the carpal tunnel (a little tunnel just under the wrist). That's when you start feeling funky feelings in the fingers.

I started to get tingling sensations about 3 years back. Always happens when I use the fingers to do minor stuff like turn newspaper pages while still holding it up or eating with chopsticks. When you feel a tingling sensation in the fingers, thumb, index finger and middle finger, I get to wish you, "Welcome to the club!"

That time it was still mild, I didn't know, didn't do research thought I busted something while doing Taekwondo, do more typing, 3 years down the road, I can't write more than 5 minutes without a searing debilitating pain in the wrists. At night at times, I feel like my arms are dead and boy, does - it - bloody - hurt!!! God, why do these things happen to me?!

The cure? Rest the bleeding thing. Easier said than done, my hands are tools of the trade, I can't do a Stephen Hawking and get one of his really cool gizmos or start typing using a pencil in my mouth. So I guess I got to do the next best thing, rest the hands after 30 minutes of use. Again, harder said than done. 2 months it seems, need complete rest, other than that, wear a splint, both hands had it, went for a cool neurology test. It was quite fun, I thought they were going to poke probes in me, but it was quite civil and the doctors made me feel comfortable. Apart from the electric shocks they passed through my fingers, *ouch*! Oh yeah, they can also do a nice procedure called releasing the median nerve, involves cutting the muscle near the wrist to widen the tunnel. Wow! So I can't punch no more... that's NOT a solution for me at least...!

Well, I'm doing it again, typing that is!!! So until later, take care chaps.

Busy Busy Busy...

Wow, been a long time since I've updated anything here. Basically, been busy, Alden is going to the doctors to determine why isn't he taking to speaking yet. Yup, he's not too keen on speaking and the thing that gets us worried is he's not too keen on communicating. He seems to understand instructions pretty well and reacts (in a big way) to quite a number of keywords that we use like:

• swimming
• kai kai
• ice cream
• walk
• eat
• buy
• computer
• Yakult
• Yogurt

Other than that, not much. When he's playing, he gets so engrossed into his toys etc and doesn't bother when people call him. Really annoying this! Get pissed off at times!

We went to the doctors recently and guess what?! Doctor also didn't have a clue, I was worried that he was autistic but from observations of the paediatrician, looks OK. Suspect now is a hearing problem, perhaps some words he can pick up easily because of the sound. So we're going to get a referral from him. did I mention that per visit we have to pay RM150? Overkill... whoa.

I'm busy with projects right now, one of them is for a friend, http://www.jscabinets.com.my a site for kitchen cabinets, wardrobes and general contracting. It's a so so design, wanted it simple, more bloggy style so that the SEO can work, but funny thing is, Google bots doesn't seem to like .com.my extensions or something. Need to do something about it already.

Try to upload some pix for you guys eh! Funny ones, hey, actually I have one right here!!! Hahahaa, enjoy!

If he knows how to play with toys without eating them, or dropping them, he's not autistic. Here's some documentary proof of that. He looks like endorsing some more.

If he can watch TV for more than 10 minutes, he's not autistic, another documentary proof. This is his face after coming back from requested morning walks and watching Open Season.

Till next time!!! Check out the spare tyres on his abs, put mine to shame....!!