Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 Jenn, We all know the guilty feeling but like RSS we did nothing wrong. You are a remarkable mother and woman. Please know that I am thinking and praying for and your family. Please keep us posted on and as always, thank you for sharing. B and Kelli Brock wrote: 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...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 Hi , I am so sorry you are going through more crap. I became so overwhelmed right before Christmas, as well, with the brutal realization that this is lifelong. I was almost immobile with the fear that I won't be able to keep going and doing all this RSS related stuff. I always so admire how up-to-date you are on all the studies and info and, in my mind, you are the RSS Mom I wish to be. You do a great job. The guilt and fear that we are doing it wrong is probably worse than the RSS. You are an incredible mother. Hang in there. My love to you and to . I'm sure we'll all get through this...right!? Kathy (Willie, almost 5, 26 lbs, genotropin, Zantac, periactin, ST, OT ,etc, etc, etc) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 hey jen!! i will keep lindsay in my thoughts and prayers!! and you as well as you go through a new journey and learning in something else in lindsay's health. thank you for sharing this with all the other parents as well who may or may not know what to look for and now possibly have answeres if their child has had similar symptoms. ((HUGS)) jodie c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 , I am SO GLAD that you posted this on the listserve. I did not want to divulge info that you had shared with me, but now that it's in the open, I feel so relieved. As you know, I'm so sorry that is having this problem. On the other hand, I'm so relieved that it is most likely not a seizure disorder. Did you ever think we would be happy that our kids have one thing instead of another? You are right: we keep getting hit with one thing after another. Just when we think things are okay and calm, something else pops up. I guess the most remarkable and startling thing is what you pointed out that we discussed in our emails: This reflux thing isn't going away and we have to be so vigilent in watching it and looking for other situations and complications. Look at what I posted about Max's teeth! Who would have guessed that one? I would be very interested to know what the GI says about the reflux. As I told you, Max's seems to be more under control with the twice a day Protonix. That keeps those acid pumps from producing acid altogether. While I know that Max still has some reflux, he does not complain of the pain anymore. But the longterm effects and the prognosis are kind of scary - because we just don't know!!! I know that each day you will feel better. Either that or you will kind of become like me: numb. I feel bad only for a little bit and then a self-protective mechanism comes over me and I just don't feel anything. Not sure if that's good or not, but we are talking about self-preservation here. How much more can we all take????? Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 , I'll be keeping you and in my thoughts and prayers! I so wish that it was easy to get to everyone and give huge hugs to make them feel better. Please keep positive and know that we all care about you and . Dawna Matt 13, 11, 8 and NOah 3 RSS > > 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...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 Hello, I will keep and you in my prayers. Thanks for the info. I haven't been on very much since my computer broke. Keep us posted how her test goes. na's GI is great he was the one that got us to see the genetics, endo, ent, he said she had RSSa few years ago, but I told him doctor h said no. She loves him. He is probably the only one she will do anything for with no questions asked or hesitation. He doesn't have a bedside manner with parents but I don't care as long as she likes him and he has helped her go from a thin weak floppy rag doll to a some what strong walking doll that can now jump. It is scary just when you think you get through one wall another one gets built infront of you. I know you are a great mom and a strong person so you will push this wall out of 's way and continue to help her become the beautiful young lady and adult she is destind to be. Marcy nas mom Brock wrote: 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...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 Well, that just stinks, to put it politely. Enough should be enough! Hopefully managing GERD will bring it back under control??? > > 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...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 jenn, yet again something new thanks for sharing. i will keep you and your family in my thoughts and paryers. i wish it was all cut and dry that nothing new would come up but......................you know . i go through the same feelings what more can i do or how much more can my child handle but in the end as i wacth jacob he does alright with everything new. sending hugs cara Brock wrote: 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...
Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 , Please know that we are all here to support you. We all understand the anxiety of going through yet another " new " thing with our kids. Keep us up to date. Know that you are in our thoughts and prayers. Judith, Steve, (RSS) and (non RSS) almost 6 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 , Wow. That had to have been scary for you to see her doing that. I am relieved to hear that it probably isn't seizures though. I am hoping you will get a chance to fill us all in once you know what is going on. I am worried about the " Sandifer's Syndrome " because God knows has severe reflux and I am not convinced that the medicine he is on is controlling it. And, unfortunately Dr. H switched him over to Prevacid solutabs twice daily and I have been known to forget one of the doses. So, I know what you mean about the guilt feeling. Ugh, the guilt could drive me crazy in itself. I am going to be thinking and praying for and please let us know what you learn. It is great to be able to learn form each other. I am just so sorry has to go through this. Jodi R. > > 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...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 Thanks Jen for all the info. I am sure I speak for all the parents of young RSS kids that we really appreciate all the info you other moms give us. I am so grateful for that. We will keep your family in our prayers! (Mom to Laikyn) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 , I just read your post as I have been offline for a while now...how is ? I never knew about this syndrome! Not another thing to worry about. When Dalia was an infant she had head bobbing and we took her to the neurologist and she had an MRI even...they found nothing...they eventually went away and I later thought and still did until today that it was sleep deprivation..now I wonder about Sandifer's...can it go away once the reflux is treated properly?? Sheryl (Dalia's and Hanna's mom) > > 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...
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