Begging for HELP! Seizures--EEGs vs. MEEGs and SPECTS

June 4, 2009

Hi all & thank you for taking a moment to read this and for any help you can

offer.... we are desperate!!!!

I am hoping that some of you very smart, biomed savvy parents can help us with

our current crisis. We (including teachers & our DAN doc) are concerned that

our son, 5 y.o., is having increased onset of seizures. We have been following

the protocol w/ our DAN doc for over 1 year w/ incredible results (GFCF, many

supps, enzymes, probiotics, botanicals and detox, w/ chelation starting next

week... homeopathy protocol w/ Rudi Vespoor begining in 2 mos...then plan is for

anti virals, anti fungals, glutathione, etc.)

But now for the past few months after so much progress...SERIOUS REGRESSION! We

are losing so much ground so quickly now, it's hard not to panic! Our story is

unusual/weird. He had only mild sensory/attentional issues until age 4, then a

SEVERE autistic regression where he lost all language and other established

capabilities (2 weeks following the nasal flu mist vacination...!) Any

regression causes us to freak out b/c of what we have been through (we are

trying to stay calm)

Now after regaining most previous functioning, he is suddenly having NEW serious

body/spatial and motor planning issues (getting lost in the middle of taking his

lunch box to his cubby, bumping into walls, confused in potty sequencing to the

point of going first to sink to pee, increased episodes of clumsiness, spacing

out & forgetting what he was doing, confused about simple matters, can't

remember the simple sequence for putting shoes on...

Sensory stuff is also off the charts (cannot stand noise), and suddenly we see

our usually very engaged boy w/ huge increase in social withdrawal, disconnected

from peers and inappropriate social behavior (repeating things, annoying peers

by touching them, etc.), things which he had previously mastered. Also tons of

vocal stims... constant singing & talking to self, mumbling when speaking to

people so that you cannot understand, low volume and non-sensical talking....!

Also, receptive language is way off--need to repeat and repeat things.

Also he complains ALWAYS of being tired, even after a full nights sleep. (He

does take calming supps at night & throughout day but we've recently lowered the

doses and he's still tired--our DAN says that seizures go hand in hand w/

tiredness as sleep cycles are not happening right often)

Nothing has really changed for us lately in terms of the DAN protocol. The only

thing I can think is that he has recently had some very big growth spurts and I

have heard that there is a correlation b/t growth spurts and seizures....

He had a 24 hr. sleep deprived EEG (1 yr ago) that was normal. We are seeing a

Neuro Monday and I need help to ask the right questions and get the right kind

of help.

I am panicked because our DAN has explained that the EEG does not often pick up

the kind of seizures he may be having and he was so traumatized by the previous

one I do not want to do it if it will not yield the info we need (she claims

that EEGs only reveal outer 20% of brain activity and that seizures are far more

common w/ our kids than most realize and deep tissue events that are hard to

capture w/ conventional diagnostics...)

DAN dr is recommending a MEEG test instead of the EEG. Can anyone explain to me

the difference between the SPECT and MEEG? Doesn't the SPECT require injecting

radioactive material?

Also, I am wondering if any of you have experience with anti-seizure

medication... any success stories with less side effects? We are very wary of

pharmaceuticals and were hoping to avoid them entirely. (I'm assuming we can

increase things like Gabba, Magnesium Malate & Inisotol...my DAN says that even

though supposedly they do not penetrate the blood/brain barrier, many kids w/

developmental delays have damaged blood/brain barriers and these supps can

therefore have greater direct effects than one might imagine...does this make

sense?...)

I am desperate to find a truly good, DAN friendly neuro, in New York hopefully.

I have seen Dr. Sharon Herzfeld, a neuro who also practices homeopathy--she's

perhaps the best of all the many (4) I've seen, but not really cutting edge in

the way I think we need. I want someone who understands the best diagnostic

tools to use or who is willing to experiment w/ medication and consult w/ our

DAN.... Any recommendations, even outside of NYC???? THANK YOU FOR ANY IDEAS

HERE!!!

One last question-- has anyone had any experience w/ the anti-glutamate

medication NAMENDA? Our DAN spoke to us about it as I guess it is being used w/

some success in children w/ developmental delays. Over abundance of glutamate

and the Glutamate/GABA binding properly is a huge issue w/ our son, especially

after the Flu Mist (which contains MSG!)

Thanks in advance for sharing any recommendations/experiences you may have with

all of this!!! We are so grateful for any and all thoughts!

Thank you, thank you, thank you all & god bless!

Alisa

June 5, 2009

> Now after regaining most previous functioning, he is suddenly having NEW

serious body/spatial and motor planning issues (getting lost in the middle of

taking his lunch box to his cubby, bumping into walls, confused in potty

sequencing to the point of going first to sink to pee, increased episodes of

clumsiness, spacing out & forgetting what he was doing, confused about simple

matters, can't remember the simple sequence for putting shoes on...

> Sensory stuff is also off the charts (cannot stand noise), and suddenly we see

our usually very engaged boy w/ huge increase in social withdrawal, disconnected

from peers and inappropriate social behavior (repeating things, annoying peers

by touching them, etc.), things which he had previously mastered. Also tons of

vocal stims... constant singing & talking to self, mumbling when speaking to

people so that you cannot understand, low volume and non-sensical talking....!

> Also, receptive language is way off--need to repeat and repeat things.

All of these issues meant yeast overgrowth at my house. I would try starting or

increasing a heavy-duty yeast protocol, see if that helps.

http://www.danasview.net/yeast.htm

Dana

June 8, 2009

Have you checked him for Gluten Dairy allergies? Just asking because having food

intolerances tested and the appropriate diet has been very important for brain

health in our house.

ANjana

> > Now after regaining most previous functioning, he is suddenly having NEW

serious body/spatial and motor planning issues (getting lost in the middle of

taking his lunch box to his cubby, bumping into walls, confused in potty

sequencing to the point of going first to sink to pee, increased episodes of

clumsiness, spacing out & forgetting what he was doing, confused about simple

matters, can't remember the simple sequence for putting shoes on...

> > Sensory stuff is also off the charts (cannot stand noise), and suddenly we

see our usually very engaged boy w/ huge increase in social withdrawal,

disconnected from peers and inappropriate social behavior (repeating things,

annoying peers by touching them, etc.), things which he had previously mastered.

Also tons of vocal stims... constant singing & talking to self, mumbling when

speaking to people so that you cannot understand, low volume and non-sensical

talking....!

> > Also, receptive language is way off--need to repeat and repeat things.

>

> All of these issues meant yeast overgrowth at my house. I would try starting

or increasing a heavy-duty yeast protocol, see if that helps.

>

> http://www.danasview.net/yeast.htm

>

> Dana

>

June 8, 2009

A couple of times for us regression was due to depletion of certain vitamins and

minerals due to certain detox treatments. Or, yeast was getting out of control

due to a new diet issue or treatment.