Genetic Testing Update

I have not talked much about genetic testing lately, as I don’t feel like being so negative on this blog. If there is one thing that infuriates me, it’s insurance. Yes, a must-have, but we have got the run around. No, this is not a life or death situation, but frustrating nonetheless.

Gavin’s ERG took almost 8 months to clear, and our Dr had to fight for it.

Really?

We’ve waiting 1 year for the results from the Carver Lab, in which the gene was not identified.

Last July ‘10 we started the interest into looking to another facility to do genetic testing, we are now in March ‘11.

Now, we have been getting the run around, to cover the genetic testing at another facility. We were so close to just paying it ourselves.. but I didn’t want to give up the fight, in which the battle was half won. They approved, they denied, they needed more information. They approved, they withdrew, then the day of the last time we were to go give our blood sample, we got the call that they denied AGAIN.

Really? That was 3 months ago.

Leads us up to today. Finally we were told to go to Children’s Hospital and give our blood, and go through the copious paperwork. We were the first family who has pursued further genetic testing at this facility (from Children’s Hospital LA), so this was new to our Dr, and the great nurse that helps us with EVERYTHING. Thank you Kathy

We did that this past Monday, and we may get preliminary results today… 3 days later.

The fact that we are at this point, is a relief. I have doubts, but yet stay positive with identifying the gene. We know that it may not come back identified, and have to pursue other avenues of testing. Which is fine. The fact that, as I type, our blood work is being worked on… is a relief in itself. We’ve been waiting for this, since Gavin was 4 months old, and diagnosed unofficially. I sigh an ever greater sense of relief, because I know if and when the Dr. identifies anything, he will call me. He keeps us updated; returns phone calls/emails immediately, if not, within an hour. Thank you Dr. Chiang!

I will update as soon as we hear something. Thank you for your continued good thoughts with this. It has been a struggle. I know this can be said for many individuals who play the waiting, run around game when it comes to approval, referrals, etc. I am speaking for everyone when I say – Really? Having to deal with it on the other end, when it’s your child, makes it even more grueling.

… and so we wait

Patiently!

We have an update to the results of this testing, if you are interested.

Click HERE