eeg results/future plans

[Guest guest]

Andy and others,

We got our eeg on Tuesday and today, Thursday met with the pediatric

neurologist. We were able to reproduce the movement she has been doing while

excited during the eeg. However, the eeg was entirely normal.

We have the written interpretive report which states " The EEG contained 30-50

microvolt 8-10 cps activity in the occipital leads bilaterally, central,

pariental and frontal leads contained similiar activity. There was a small

amount of movement, eye movement and muscle artifact. "

History of neurological status: When patient gets excited and is very tired,

she stiffens arms and makes odd movements with her hands. She said her head felt

" twitchy " . This started approximately 3 months ago but is more frequent now. No

family history of seizures. She has a vasovagal response to pain. Normal

gestation, breech presentation and delivery by C- section.

Sleep was not recorded

Hyperventilation caused no pathological change

Photic stimulation caused no pathological change

There were no focal or epileptiform abnormalities

INTERPRETATION: Normal EEG

The ped neuro said that he has never in his 25 years of practice seen or heard

of a child who had seizures only while being excited. He also said the episodes

we reported did not last long enough to be seizure related. He said if it was a

tic it would be repeated 100's of time each day, which it is not. We had a

videotape of the episode and he watched it and pronouned it a " mannerism " , like

twirling your hair. I actually watched the entire eeg and when she did the

movement I saw a slight dip in the eeg, asked the ped neuro resident about it

and he pointed out that it looked like any other movement on the eeg, like when

she yawned or scratched her arm, and he's right, it did.

So that is the good news, I think. However, I have been watching this movement,

which have changed and morphed over the last few weeks. We have done no further

rounds for the last 4 weeks. At first we noticed the movement described above,

stiff arms, then it changed into arm and hand flapping (which she NEVER, EVER

did before) that is gone now, thank goodness, and now we have the arm stiffening

with finger movement. I can't say it's gotten any worse.

I'm beginning to wonder about a lot of things, but 2 specifically, the first

being; is this some kind of redistribution? She did complain the very last

round of one of her hands being numb on one side? I have to ask....Is it

possible the Ala caused some kind of damage? Or is this really just a

mannerism?

Her cognition, language, thought processes and social interactions continue to

be stellar, as they have been for the past year, but this clearly seems

neurological to me, although the ped neuro says " no " . And how to proceed from

here? I can say that noone is anxious to give her anymore Ala anytime soon

feeling that the Ala is largely responsible although it's possible this

" mannerism " would have appeared on it's own, apart from the Ala.

I know it is not anyone's duty to talk us into further chelation or anything

else but I was hoping for a dialogue about any odd reactions to Ala you have

witnessed previously that might give us a clue as to what happened and where to

go from here. I watched her fall asleep tonight thinking that we all want to do

right by her, but what? Is there any value/point in just doing Dmsa rounds at

this point?

How do you proceed, if Ala suddenly becomes " off limits " ? We have chelated for

over 2.5 years and have done about 115 rounds, do we just stop and see what

happens? I have always been a plan your work, work your plan person, but I'm

stumped here. I have thought about this so much I think my head is going to pop

off.

Thanks for any ideas, thoughts,