Re: , Sandifer's, EEG - Jen

[Guest guest]

Jen - how are things. Are they settling down a bit?

- H

> 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)

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