Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 Hi, I saw Marcy and her hsuband Kirk and daughter na at the walkathon - wow what 3 months of GH did for na! She looks utterly wonderful, plumping out and a lot stronger looking! Marcy you are doing a greqt job! > 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 > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.