Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 Marcy, I would love to talk to you when you have time. 's blood work was normal for GH but her prolactin was high and her cortisol was low so they are not sure if she is gh deficient and to be sure they are running her blood work again. If I remember correctly, na is close in age to and I would love to hear how things are going and decisions you have made. B and Kelli wrote: 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...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 Hi All, Hope all is well.na is doing well the saizen( gh) so far she has had 4.12cm growth since coming back from the conference and starting the gh. Previously she was 1.50 cm since last December.She gained weight. The best part that i have noticed is she will walk longer. Her strength tolerence is much better. Her scoliosis is the same at 15% as before the gh her assemtry is still the same, so she still has lifts in her shoes. Her fine motor still and some cognative needs help but Rome wasn't built in a day. She has had pnemonia a couple of times but doing better now. Her moods have been ok. She is now 31lb eating better. Not great but much better than before.Her reflex is at the moment under control. She will be 5 Thursday and i can say wow where did the time go.....my little girl is growing up. My husband was like why don't we wait another year to start and see..... after seeing Dr, H we started and now he is like why did we wait so long.....men. It was a hard choice and i still hope we are doing the right thing for her but so far we have a much healthier little girl who can now participate in gym and other activities before she would watch. I hope and pray that each child continues to get healthier and stay healthy. Take care Happy New Year Marcy na's mom na 38inches 31lbs wrote: 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...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 Marcy - sounds to me like you have made many right decisions and your decision to see Dr. Harbison was equally justified. Sounds like na is doing so much better and I'm incredibly happy for you. That is such great news. Thank you for sharing, it's always nice to hear the positive! - H > > 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 4, 2006 Report Share Posted January 4, 2006 So happy to hear how well she is doing! That is wonderful! ;o) 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...
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.