, Sandifer's, EEG

[Guest guest]

I don't know how to write this, and I don't have any answers. Maybe

someone out there is really good with google searches, because I am so

overwhelmed it just makes me tired.

says that she is still having the upper body " twitches. " The

way she describes them they are almost like little " jerks " , which can

cause her head to move as well. I haven't seen them occur in several

weeks, but then again, I don't stare at her, and according to

(and what I saw before), they are literally 1 second long.

While in NY, we talked to the neurologist. She did NOT want to talk to

us on the phone (drove us nuts, she kept saying things like parents

mix up the information, they panic, etc) and my husband was trying to

explain to her that by not saying anything we would panic more.

She basically said that 's EEG was abnormal; that it did

indicate some type of seizure-like activity, but that we really needed

to come in to discuss this. She said she was not in any danger by

waiting over the weekend.

She seemed to downplay Sandifer's now. The GI that I talked to over

the phone last week said that Sandifer's was more common in infants,

and usually occurs at the time the child is eating (which is NOT what

has happened with ).

I know we need to read the EEG report, and meet with the neuro.

also has the new GI workup on Monday.

has been complaining of random headache-like pains off and on

the last two months. At this point, Steve and I are leaning towards

demanding an MRI, just to calm our own fears.

The neuro was saying that the goal is to have comfortable, so

we will discuss further testing, and whether or not we want to try

medications. My poor daughter already takes 4 meds a day plus a

shot. She flat our refuses to take Tylenol when she has a headache

because she is so tired of taking meds. I am afraid that this will

put her over the top.

I know that it is doing that to us!!! She does NOT know of the

abnormal EEG findings, and at this time, we are not telling her.

Anyway, I would love to know if Sandifer's can cause an abnormal EEG

reading. My husband is leaving for Malaysia on Tuesday for the week,

my Tues/Thurs babysitter is sick and out for the week, and I am so

depressed and tired.

On a side note, we had to put my beloved 15-year-old dog Tucker to

sleep last Wednesday morning. Then an hour later, get to the airport

to go to NY for Dr. H. I am sure that part of my sadness is the

delayed reaction of losing Tucker.

Anyway. If anyone has experience with abnormal EEGs, Sandifer's,

anything, let me know. You can write me privately or here.

(, age 10)