Problems with Salem

[Guest guest]

Hi everyone - I am similar to -- just read through all the

postings for the last 2 days but to be honest, haven't read anything

in 2 weeks...

Basically, about 2 weeks ago, began having what were thought

to be either seizures or tics. Several times a day (about 5-7

times), she would have between 1 and 5 episodes, lasting only a

couple of seconds, where her upper body would jerk/shake and often

times, her head would literally bow down to where her chin would

come close to touching her chest. This rapid movement is very

startling, to her and to those around her.

Christmas weekend of course... it was happening more and more

frequently all week. We got a hold of Dr. Harbison that weekend,

and she told us to call the peds neuro first thing Monday, possibly

Tuesday due to the holiday, but that it probably wasn't a medicine

problem (we thought maybe meds interacting). But not life

threatening and to enjoy Christmas.

We saw the peds neurologist on Tuesday. will be having a

drowsy EEG next Friday (where the child gets 4 hours of sleep the

night before). But the neuro feels very confident that this is NOT

tics, and is not technically " seizures. " She feels that we are

going to find out that this is " Sandifer's Syndrome. "

I am writing you all since this could happen to any of our kids.

Sandifer's Syndrome is a rare syndrome that is a disorder " of the

upper GI tract with neurological manifestations occurring in

children and adolescents. " Basically, when a child's GERD is not

being managed adequately, the body can respond by developing this

syndrome, where there is " torticollis " (the head pulling forward or

backward -- remember our infants when they would arch their head

back!!!), and for , multifocal dystonia (which is muscle

spasms in multiple non contiguous areas (for her, the head and

abdomen/chest).

We are trying to get in with a reknowned peds GI next week, as our

prior GI moved to Kaiser months ago.

hates the " shaking " as she calls it, and is keeping a log of

when it occurs. It does NOT occur when she is laying down or

sleeping, and she doesn't feel it happening when she is running

(e.g., soccer). It only happens when she is at rest (which may be

that is when she is only noticing it).

But I will tell you, there was one time in the car when I saw her in

the rearview mirror and I almost pulled the car over, it looked like

she was having a multi seizure, her head bobbed up and down 5 times

so fast!!!

Jodi Z and I were writing each other, and one of the things we were

commiserating about is this horrible feeling that " THIS IS A

LIFELONG PROBLEM. " I think I truly believed that our kids would

just somehow magically outgrow all these gut dysmotility issues, and

I think this is really a wakeup call for me. Because to be honest,

this past month, we have not been consistent with remembering to

give her the Prevacid before dinner time every day. The peds neuro

doesn't think that skipping a couple Prevacids a week, at dinner

(while still giving her the morning dose) would be enough to cause

Sandifer's) but it is still the guilt, and realization that this is

BIG TIME.

When is this going to end? I am SOOO sock of all of this. I want a

normal life. I feel like every month we wait to see what other

hammer is going to fall. I thought that years age 6-8 were

relatively easy -- no pubertal issues to worry about, GH was going

well, weight wasn't so scary anymore, and now, bam.

Anyway, I know that I will feel better tomorrow. But I wanted all

of you to know about " Sandifer's " in case any of your children may

turn out to have symptoms as well. The literature says that it can

be VERY common even in infants!!!

Salem