>> Tuesday, June 5, 2012
When we found out about Bug's low levels of 5-MTHF, we did the research and then made an appointment with his primary care physician.
When we handed Dr. Spencer the 2, only 2, printouts we had brought with us, he READ THEM and then he asked if we wanted the blood test. Just to be sure?!
Yes please. Although I believe I said...well hell ya.
So, Spencer arranged it.
With the ONLY lab IN THE WORLD that does it. It took him two hours. WITH THE ONLY LAB IN THE WORLD. How cool is he?
It didn't take him long at all...because he is smart...and because he cares...and because he is a GREAT Doctor. And I am NOT over exaggerating this time. He literally looked up the study author(s), found the one that he was sure could do the test or point us in the right direction, and he CALLED HIM. Novel idea huh? Dr.Edward Quadros answered his own phone and walked Spencer through what needed to happen. ANSWERED his OWN phone...at 5:30 at night. I like him. Haven't met him, but I like him.
Spencer sent an email and less than 10 minutes later, Dr. Quadros sent back the instructions on collecting the blood and sending the sample to his lab. A 100$ donation is requested. Ok. We can do that.
And today, I am off to pick up the pre-paid FedEx envelope, take it over the AMFO HO lab and then send it directly to Dr. Quadros for evaluation. Gotta say, this is one of the simplest things ever that may have the BIGGEST impact on my little family. Especially the Bug.
Quadros said that since the publication of the research paper, they have had INTERNATIONAL response and requests for testing. He stated that they were almost overwhelmed. And that made me smile. I have such little respect left for the medical community that it makes me extremely happy to hear about so many proactive Doctors and Medical Centers.
I will stress again: ANYONE with an Autism Spectrum Disorder, with or without seizures, should get this test. It's less invasive than the lumbar puncture and has about a 50% chance of being positive for FRa. If not, talk to your Doctor about trying Leucovorin for about a year, just to see if it helps. It can't hurt. It really can't. And the best that can happen: You can get your child, your self, or someone you love the opportunity to improve their situation. And that can't be bad can it?
And about Bug: He is doing well. Really well. We took it upon ourselves to up his med by 5mg a day and he has had 2 seizures in 48 hours, and one had Tay as a witness only so...might go with just one. It was less than 5 seconds and only his arms were involved. He came out of it immediately and has been very happy all morning. The eye contact continues and he is animated and interested in other things, not the standard play toys. So...we will see what comes next. Will the shoe drop? or will he put it on his foot? Only time, and a med increase, can tell.