Prayers to both Alyssa and Matt!!!

February 18, 2011

Oh Alyssa I'm so sorry!!!

When you say take a break from NV- is there a reason? Tanner now loves his NV-

is Matt sick of it? Well the good news is that if it worked for Matt and all the

others that stopped having seizures and went off meds due to it- it should work

again.

Please keep us posted and if you are low on NV I'm sure you can get some from

Barbara. Does she know (well I guess now she does!)

While I know for kids with apraxia and autism if we take them off after 6 months

to a year in some cases now there is no harm in regression for autism or

apraxia- other than regression. But stopping NV or even reducing dosage after

years on multiple medications where Matt still had seizures and the doctor was

going to remove part of his front temporal lobe...nobody has that answer and the

risk is great from where he was prior. Please don't tell me you stopped it

because of this blog I wrote!!

ssential-nutrition-for-autism-apraxia-etc/

Again I really only meant it for the apraxia and autism -as it seems the goal

for most parents is to use something and be able to stop it. But as we know we

can't stop essentials of air, water, or nutrients- all are needed one way or

another and all NV is would be essential nutrients- so if whatever essential

nutrients are in it aren't consumed in other foods one would need it for life.

I just know it's going to be OK again Alyssa! Do you think we should update

your page now for seizures and report this so others know?

in-treatment-of-seizures/ There is no way to know if he had the seizure because

he stopped NV for 2 weeks -but we can just document exactly what happened.

I do plan on bringing Tanner down to maintenance at some point which would be a

scoop or two a day vs any more than that, but as I wrote on that page I'm one of

those parents that wants Tanner to take fish oils for life -and now that I see

what NV does -I think having a protein shake a day as a snack or a meal even is

healthy- so why not? ....weren't you giving Matt a half dosage just 2 scoops a

day and yet he still didn't have a seizure...or did you go back to the 4 a day?

When you started him back up was it on the full or half dosage for his age?

Until research we won't know and thus we are years off from the answer. Did you

speak with his doctor yet? If you did what did he say?

I do honestly believe the reason for the seizure was the lack of NV for 2 weeks

and that he'll be fine again once back on -and I would give him the 4 scoops a

day again.

I'm praying for you and Matt that NV is the answer again for now!!!

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