My daughter...considering starting...

December 17, 2010

I have been a member of this board for almost a year...educating myself about

the protocol and reading all of the great information. I also have a

friend whose son was on the protocol for 3 years (she recently stopped),

but I also gained great information from her as well.

My daughter is almost 8...verbal (only when she wants to be...not super

conversational), has seizures (has been on Lamictal for 2.5 years..not diagnosed

until age 5), has been tested for autism twice...(PDDNOS possible...very few

traits of autism)...I think the problem has always been related more to her

epilepsy than anything else. We followed the DAN protocol...mainly supplements,

attempted chelation for 6 months, sequential homeopathy for 3 years. I have

studied the whole HHV6 connection to inflammation...she has a positive test for

this...low titers, but I have been reading that the numbers don't increase until

you are on an antiviral for a long period of time. We attempted Valtrex a few

years ago...and I freaked out at the changes in her and stopped (which I now

realize is a good sign that she actually needed it). We are also in the process

of having her tested for mitochondrial disease...

I am now trying to figure out what step to take next. We have spent a small

fortune (just like everyone else out there) and I am now slowing down the

homeopathy to look into other options. I still think that Valtrex or Immunovir

(HHV6 Foundation recommended this one for her) would be a good choice for

her...(although I think if Valtrex...we should probably wait until a break in

school). I just thought that I would mention as many things regarding her

situation to see if anyone thinks that is the right step now. She is still

very developmentally delayed....was at an ABA school for 3 years and it didn't

help...she does more for me at home than she does there (she can read and

count). She is very much into music...(wonder if she is actually a music savant

or if this is what she did to cope with her seizures for years before

diagnosis...positive that she has had them since her vaccines as a baby.)

Thank you for your time...and any advice or recommendations are GREATLY

appreciated. Sincerely, Tricia

December 17, 2010

Dear Tricia

The path you have been on sounds almost exactly like the road we have been on,

except my son is 9. I am also considering after being on this board for

about a year.

Sent from my iPhone

On Dec 17, 2010, at 7:34 AM, " westbrook66@... "

<westbrook66@...> wrote:

I have been a member of this board for almost a year...educating myself about

the protocol and reading all of the great information. I also have a friend

whose son was on the protocol for 3 years (she recently stopped), but I

also gained great information from her as well.