Well...Buggar me...dare I hope?

>> Thursday, May 24, 2012

Bug has been scaring me lately. Acting very tired, not eating much and having one to three seizures, that we know of, a day. I waited to do anything because we were set to see Dr. Filloux today.

After a bad morning, although a good breakfast (hooray McDonalds...it never fails), Glenn, Ava and I took the Monkey Boy to see the Doctor.

Pleasantries were exchanged, medication history transmitted, blood work discussed and a new direction agreed upon: up the Lamictal to 250 twice a day, leave everything else the same and then leave Onfi on the table for failure option.

And then....

Dr. Filloux became slightly animated as he said:
OH! I meant to talk to you about something we found in his Cerebral Spinal Fluid.

Wait...what..what...what? Something? You found SOMETHING? How Something?

He is almost completely missing a very important neuro transmitter.

Thud. That was my stomach.

5-methyltetrahydrofolate (5MTHF)...I recognized this immediately. At least closely...MTHFR. Remember that? Not related but still...I can say it.

Doc says: There is a condition, that I think we should treat him for. Treatment is an analog folate supplement.

Zing. That was my heart soaring.

He added: It is exciting to see how he responds...we actually found something we can treat.

I looked at Bug and then Glenn and wanted to cry. I am trying to hold myself in check but this has to help him. He is deficient in it so it HAS to help in some way. This is an exciting moment...and all I want to do is dance. But I won't. Not yet.

6 comments:

Holly Elizabeth May 24, 2012 at 2:09 PM  

Oh my gosh!!! This is such an exciting new discovery. I am liking the sound of this new doctor - alot! :-)

Jennifer May 25, 2012 at 5:03 PM  

OH MY GOD!!!! I am hoping this is it... or at least this is something...

Nett May 25, 2012 at 10:16 PM  

From the research we have done, we are pretty sure it has to help him and help him almost immediately. If he is completely lacking it then providing it will make some difference, should make a big difference. And now...we wait. Upping the meds in a week as long as he tolerates it. Fingers crossed for easy trip to final dosage!

Holly Hansen June 7, 2012 at 3:58 PM  

Just curious, what type of folate did he prescribe?

Nett July 25, 2012 at 2:19 AM  

Holly, so sorry I didn't see your post. He is on Leucovorin.

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