We're hoping to get a broader audience
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HikingStick
Jun 9, 2009, 2:14:27 PM6/9/09
to Sotos Syndrome Families (MN)
Our son had an appointment with his genetecist last week. When she
learned that we started this online discussion forum for Minnesota
families affected by Sotos Syndrome, she was excited by the concept
and indicated she's willing to pass information about the group on to
other families that are dealing with Sotos. We're going to send her
the link, and she'll pass it on from there. It will be nice if we can
get a few more families involved.
learned that we started this online discussion forum for Minnesota
families affected by Sotos Syndrome, she was excited by the concept
and indicated she's willing to pass information about the group on to
other families that are dealing with Sotos. We're going to send her
the link, and she'll pass it on from there. It will be nice if we can
get a few more families involved.
Jenny Moretter
Jun 9, 2009, 2:18:40 PM6/9/09
to sotos-syndrom...@googlegroups.com
That is great!! If you do not mind me asking what Genetecist did you take your son to? I have taken Mackenzie to Nancy Mendelson at Childrens and I was extremely pleased.
Marie Jayne Riemer
Jun 9, 2009, 2:34:11 PM6/9/09
to sotos-syndrom...@googlegroups.com
Dr Susan Berry at the university of Minnesota.
Shes really good too!
Marie J.Riemer mjri...@hotmail.com
Shes really good too!
Marie J.Riemer mjri...@hotmail.com
Jenny Moretter
Jun 9, 2009, 2:35:48 PM6/9/09
to sotos-syndrom...@googlegroups.com
It would be great to have our families meet for lunch or a day at the park with the kids. Would you be interested in getting together possibly this month or July?
From: sotos-syndrom...@googlegroups.com
[mailto:sotos-syndrom...@googlegroups.com] On Behalf Of Marie
Jayne Riemer
Sent: Tuesday, June 09, 2009 1:34 PM
To: sotos-syndrom...@googlegroups.com
Subject: RE: We're hoping to get a broader audience
Dr Susan Berry at the university of
Minnesota.
Shes really good too!
Marie J.Riemer mjri...@hotmail.com
> From: jen...@generalparts.com
> To: sotos-syndrom...@googlegroups.com
> Date: Tue, 9 Jun 2009 13:18:40 -0500
> Subject: RE: We're hoping to get a broader audience
>
>
> That is great!! If you do not mind me asking what Genetecist did you take
your son to? I have taken Mackenzie to Nancy Mendelson at Childrens and I was
extremely pleased.
>
> -----Original Message-----
> From: sotos-syndrom...@googlegroups.com
[mailto:sotos-syndrom...@googlegroups.com] On Behalf Of HikingStick
> Sent: Tuesday, June 09, 2009 1:14 PM
> To: Sotos Syndrome Families (MN)
> Subject: We're hoping to get a broader audience
>
>
> Our son had an appointment with his genetecist last week. When she
> learned that we started this online discussion forum for Minnesota
> families affected by Sotos Syndrome, she was excited by the concept
> and indicated she's willing to pass information about the group on to
> other families that are dealing with Sotos. We're going to send her
> the link, and she'll pass it on from there. It will be nice if we can
> get a few more families involved.
>
>
>
>
> </html
Lisa
Jul 21, 2009, 2:05:13 PM7/21/09
to Sotos Syndrome Families (MN)
I'm new here, but think this is the start of a great forum. It's nice
to hear what other families are experiencing having a child diagnosed
with Sotos. My little girl is just about two and was diagnosed at 15
months old.
Lisa
to hear what other families are experiencing having a child diagnosed
with Sotos. My little girl is just about two and was diagnosed at 15
months old.
Lisa
Jenny Moretter
Jul 21, 2009, 2:18:04 PM7/21/09
to sotos-syndrom...@googlegroups.com
I would love to hear about your little girl. I too have a 4 year old that was diagnosed around the age of 2.
-----Original Message-----
From: sotos-syndrom...@googlegroups.com [mailto:sotos-syndrom...@googlegroups.com] On Behalf Of Lisa
Sent: Tuesday, July 21, 2009 1:05 PM
To: Sotos Syndrome Families (MN)
-----Original Message-----
From: sotos-syndrom...@googlegroups.com [mailto:sotos-syndrom...@googlegroups.com] On Behalf Of Lisa
Sent: Tuesday, July 21, 2009 1:05 PM
To: Sotos Syndrome Families (MN)
HikingStick
Jul 21, 2009, 3:48:06 PM7/21/09
to Sotos Syndrome Families (MN)
I'm sorry I did not see your post earlier--it has been a hectic
summer. Welcome! Glad to have you here.
I was just asking Marie about a weekend for a possible picnic--perhaps
in or near Waconia, MN. Look to see a post from her by this weekend
with possible dates (we've had more weddings to attend this year than
in my life to this point!).
Andrew
> > get a few more families involved.- Hide quoted text -
>
> - Show quoted text -
summer. Welcome! Glad to have you here.
I was just asking Marie about a weekend for a possible picnic--perhaps
in or near Waconia, MN. Look to see a post from her by this weekend
with possible dates (we've had more weddings to attend this year than
in my life to this point!).
Andrew
>
> - Show quoted text -
Lisa
Jul 22, 2009, 1:13:56 PM7/22/09
to Sotos Syndrome Families (MN)
Jenny,
My little girl will turn two at the end of this month. She is 3 feet,
3 inches tall and weighs 35 lbs, so looks more like a 3 or 4 year
old. She receives physical therapy once a week, occupational therapy
every two weeks and on the opposite week has an early intervention
teacher come into our home to work with her. She had a major set back
with development in November when she was dealing with infantile
spasms. If you're not familiar with I.S., it is a fairly rare type of
seizure that usually hits before age two and is very hard to control
If not controlled, the child will not progress developmentally and it
can result in mental retardation or death. We caught it early and
after a number of months of trying different treatments, we were able
to become I.S. free. The steroids and other meds that she was on
really halted her cognitive growth during this time. She also has
epilepsy, but that is nicely controlled with meds. We're just
starting to see her really develop cognitively again. Speech is very
delayed. She can say "no", "mom", "daddy", "hi", "meow", and "arf".
Last night I was thrilled to see her put "hi daddy" together. She is
just starting to pick up some sign language as well. She understands
much more than she can communicate.
She has a wonderful sense of humor, loves music, loves to dance, and
has a great love of books. She is a happy girl most of the time,
especially if she has attention. She is a very social child and loves
to be around people. While I would never have asked for Sotos
Syndrome to affect our family, she is such a joy and a blessing and we
are learning so much. She has so much love to share and gives the
best hugs and has started giving kisses on occasion too. Successes
seem so much sweeter because she works twice as hard as the normal
child to achieve them. When she does achieve them she is so proud, as
are we and she loves to have a cheering section.
I would love to hear about your little girl as well.
Lisa
My little girl will turn two at the end of this month. She is 3 feet,
3 inches tall and weighs 35 lbs, so looks more like a 3 or 4 year
old. She receives physical therapy once a week, occupational therapy
every two weeks and on the opposite week has an early intervention
teacher come into our home to work with her. She had a major set back
with development in November when she was dealing with infantile
spasms. If you're not familiar with I.S., it is a fairly rare type of
seizure that usually hits before age two and is very hard to control
If not controlled, the child will not progress developmentally and it
can result in mental retardation or death. We caught it early and
after a number of months of trying different treatments, we were able
to become I.S. free. The steroids and other meds that she was on
really halted her cognitive growth during this time. She also has
epilepsy, but that is nicely controlled with meds. We're just
starting to see her really develop cognitively again. Speech is very
delayed. She can say "no", "mom", "daddy", "hi", "meow", and "arf".
Last night I was thrilled to see her put "hi daddy" together. She is
just starting to pick up some sign language as well. She understands
much more than she can communicate.
She has a wonderful sense of humor, loves music, loves to dance, and
has a great love of books. She is a happy girl most of the time,
especially if she has attention. She is a very social child and loves
to be around people. While I would never have asked for Sotos
Syndrome to affect our family, she is such a joy and a blessing and we
are learning so much. She has so much love to share and gives the
best hugs and has started giving kisses on occasion too. Successes
seem so much sweeter because she works twice as hard as the normal
child to achieve them. When she does achieve them she is so proud, as
are we and she loves to have a cheering section.
I would love to hear about your little girl as well.
Lisa
Jenny Moretter
Jul 22, 2009, 1:49:17 PM7/22/09
to sotos-syndrom...@googlegroups.com
WOW, our daughters are so much alike!! Mackenzie has not had seizures nor epilepsy but we have had our share of medical issues. She had surgery when she was a little over 1 year old to remove a teratoma on her tailbone and also tethering of her spinal cord. She also was diagnosed with Sagital Craniosynotosis (caused by the bones in the brain fusing together to early) in which she had to wear a Cranio cap for about a year. She also has development delays in speech and some physical delays (light on her feet is what we call it). We have had a constant struggle with going potty that we have had to give her different medications to regulate her otherwise she becomes so constipated and will not eat. It is almost like she has a fear of going. Potty training is not an option yet although we have tried many times with no luck at all. We have had many therapists work with her for occupational, speech, cognitive, etc which seems to help. We have learned that children with Soto's tend to learn at their own pace with constant repetition or consistency. It is funny that you say "sign language" we too have done this and it has helped greatly with her learning new words and being able to communicate better.
Mackenzie too has a very sweet disposition. She tends to become very sensitive and can cry very easily or get upset if she does not have constant attention or get what she wants. I am not sure if you have experienced this yet but at times they can display anger in which they bang their head or slap their face and need to be restrained. It is almost like the behavior of watching a child with autism. I have asked many doctor's about this and generally they all say the same thing. They express this being they can not express thru communication like we can. I also have 2 other children at home ages 7 and 1, and Mackenzie is very territorial of her room, toys, cups, etc. She has to have things so routine otherwise she feels lost. She too loves music, dancing and cartoons. She gives hugs all the time but does not give kisses by mouth she will always put her head down to give kisses.
I would love to talk to you more or meet in person for a picnic or something. We live in Shakopee, where are you located?
Jenny
Mackenzie too has a very sweet disposition. She tends to become very sensitive and can cry very easily or get upset if she does not have constant attention or get what she wants. I am not sure if you have experienced this yet but at times they can display anger in which they bang their head or slap their face and need to be restrained. It is almost like the behavior of watching a child with autism. I have asked many doctor's about this and generally they all say the same thing. They express this being they can not express thru communication like we can. I also have 2 other children at home ages 7 and 1, and Mackenzie is very territorial of her room, toys, cups, etc. She has to have things so routine otherwise she feels lost. She too loves music, dancing and cartoons. She gives hugs all the time but does not give kisses by mouth she will always put her head down to give kisses.
I would love to talk to you more or meet in person for a picnic or something. We live in Shakopee, where are you located?
Jenny
Lisa
Jul 22, 2009, 6:15:26 PM7/22/09
to Sotos Syndrome Families (MN)
I can definitely relate to the need for routine as well. It's funny
she picks a book or a toy at the beginning of the day and that is the
"toy/book of the day" and she carries it around with her for a good
part of the day. Don't even think about taking it away from her!
I've also found that if we move anything in her room of consequence it
bothers her. She had a felt frog on her dresser and I decided it
would look good on the wall. She was so bothered that it was on the
wall that I eventually just put it back where we had it.
Does Mackenzie relate well with your other two children? Our little
one is an only child and I'm not sure whether to pursue more children
or not. I want to give her all the attention she needs, but would
love for her to have a sister or brother as well.
Lisa
> > - Show quoted text -- Hide quoted text -
she picks a book or a toy at the beginning of the day and that is the
"toy/book of the day" and she carries it around with her for a good
part of the day. Don't even think about taking it away from her!
I've also found that if we move anything in her room of consequence it
bothers her. She had a felt frog on her dresser and I decided it
would look good on the wall. She was so bothered that it was on the
wall that I eventually just put it back where we had it.
Does Mackenzie relate well with your other two children? Our little
one is an only child and I'm not sure whether to pursue more children
or not. I want to give her all the attention she needs, but would
love for her to have a sister or brother as well.
Lisa
Marie Jayne Riemer
Jul 22, 2009, 6:28:04 PM7/22/09
to sotos-syndrom...@googlegroups.com
Gideon is number 9 out of 10 in siblings. Definitely having a crowd of people to love and play with him has been beneficial. I also love to see how sweet he is with his baby sister. He just lights up when he comes into a room and spots her.
I dont notice strict adherence to a routine but he is particular with his likes. Most of my other children can handle eating late or eating offschedule but not Gideon. I notice many fits if meals are not timely!!!
Gideons favorite book lately is the one titled 'No DAvid". I suspect he likes it since no is one of the few words he pronounces well lol.
Marie
Marie J.Riemer mjri...@hotmail.com
> Date: Wed, 22 Jul 2009 15:15:26 -0700
I dont notice strict adherence to a routine but he is particular with his likes. Most of my other children can handle eating late or eating offschedule but not Gideon. I notice many fits if meals are not timely!!!
Gideons favorite book lately is the one titled 'No DAvid". I suspect he likes it since no is one of the few words he pronounces well lol.
Marie
Marie J.Riemer mjri...@hotmail.com
> Date: Wed, 22 Jul 2009 15:15:26 -0700
> Subject: Re: We're hoping to get a broader audience
Lisa
Jul 22, 2009, 11:42:30 PM7/22/09
to Sotos Syndrome Families (MN)
I am thrilled to hear that Gideon is good with his baby sister. That
was one of my concerns. Would our little one be jealous of a baby or
would she embrace a new member of the family. It sounds like Gideon
is surrounded by a big family of love. I come from a family of 7 and
I know how great big families are.
Is Gideon a big fan of books? My little one LOVES books. She loves
to be read to, but also could stand and leaf through a book for a long
period of time.
Lisa
On Jul 22, 5:28 pm, Marie Jayne Riemer <mjrie...@hotmail.com> wrote:
> Gideon is number 9 out of 10 in siblings. Definitely having a crowd of people to love and play with him has been beneficial. I also love to see how sweet he is with his baby sister. He just lights up when he comes into a room and spots her.
>
> I dont notice strict adherence to a routine but he is particular with his likes. Most of my other children can handle eating late or eating offschedule but not Gideon. I notice many fits if meals are not timely!!!
>
> Gideons favorite book lately is the one titled 'No DAvid". I suspect he likes it since no is one of the few words he pronounces well lol.
>
> Marie
>
> Marie J.Riemer mjrie...@hotmail.com
> _________________________________________________________________
> Bing™ brings you maps, menus, and reviews organized in one place. Try it now.http://www.bing.com/search?q=restaurants&form=MLOGEN&publ=WLHMTAG&cre...- Hide quoted text -
was one of my concerns. Would our little one be jealous of a baby or
would she embrace a new member of the family. It sounds like Gideon
is surrounded by a big family of love. I come from a family of 7 and
I know how great big families are.
Is Gideon a big fan of books? My little one LOVES books. She loves
to be read to, but also could stand and leaf through a book for a long
period of time.
Lisa
On Jul 22, 5:28 pm, Marie Jayne Riemer <mjrie...@hotmail.com> wrote:
> Gideon is number 9 out of 10 in siblings. Definitely having a crowd of people to love and play with him has been beneficial. I also love to see how sweet he is with his baby sister. He just lights up when he comes into a room and spots her.
>
> I dont notice strict adherence to a routine but he is particular with his likes. Most of my other children can handle eating late or eating offschedule but not Gideon. I notice many fits if meals are not timely!!!
>
> Gideons favorite book lately is the one titled 'No DAvid". I suspect he likes it since no is one of the few words he pronounces well lol.
>
> Marie
>
>
>
>
>
>
> > Date: Wed, 22 Jul 2009 15:15:26 -0700
> > Subject: Re: We're hoping to get a broader audience
> > From: dunc...@msn.com
>
>
>
>
> > Date: Wed, 22 Jul 2009 15:15:26 -0700
> > Subject: Re: We're hoping to get a broader audience
> Bing™ brings you maps, menus, and reviews organized in one place. Try it now.http://www.bing.com/search?q=restaurants&form=MLOGEN&publ=WLHMTAG&cre...- Hide quoted text -
Jenny Moretter
Jul 23, 2009, 7:53:57 AM7/23/09
to sotos-syndrom...@googlegroups.com
Mackenzie absolutely loves her brother and sister very much. They all play together and at and times fight with one another which most siblings do daily. I think the hardest part is for the parents being it is a challenge dealing with 3 children and having one that is a little more difficult. It is manageable and trust me when I say the scariest part is wondering if you will have another child with Soto's. We were lucky and our 1 yr old son is perfectly healthy. You will most definitely have enough love and attention to spread around!
Jenny Moretter
Jul 23, 2009, 7:58:33 AM7/23/09
to sotos-syndrom...@googlegroups.com
“NO”, is Mackenzie’s favorite word!! WOW, 10 children, how on earth do you manage?
From: sotos-syndrom...@googlegroups.com [mailto:sotos-syndrom...@googlegroups.com] On Behalf Of Marie Jayne Riemer
Sent: Wednesday, July 22, 2009 5:28 PM
To: sotos-syndrom...@googlegroups.com
> </html
Marie Jayne Riemer
Jul 23, 2009, 8:11:37 AM7/23/09
to sotos-syndrom...@googlegroups.com
Some days anyway, he will sit for quite awhile paging thru books. Otheer days you cant get him to stay put anywhere!
He is an escape artist too, i cant count how many times he has snuck outside this summer without a big person chaperone!
MJ
Marie J.Riemer mjri...@hotmail.com
> Date: Wed, 22 Jul 2009 20:42:30 -0700
He is an escape artist too, i cant count how many times he has snuck outside this summer without a big person chaperone!
MJ
Marie J.Riemer mjri...@hotmail.com
> Date: Wed, 22 Jul 2009 20:42:30 -0700
> Subject: Re: We're hoping to get a broader audience
Jenny Moretter
Jul 23, 2009, 8:21:07 AM7/23/09
to sotos-syndrom...@googlegroups.com
Mackenzie loves for us to read books to her. We are trying to get her to identify different objects and colors. She does well pointing out objects but still struggles with the colors. I have noticed that if we give her options to choose from it makes it much easier but if you simply ask her the color she can not tell you.
I have to laugh when you say escape artist, we can not get Mackenzie to go off and play without us being right there or her sister.
> </html
HikingStick
Jul 23, 2009, 10:04:08 AM7/23/09
to Sotos Syndrome Families (MN)
With a "normal" younger sibling, the hardest thing I've found are
those melancholy moments where you realize that the younger child has
already surpassed the older child with Sotos Syndrom. Our youngest is
reaching all expected milestones in a timely manner and is already
walking along furniture and playing with vocalizations. She will turn
one in October. For Gideon, those behaviors came much, much later.
While we are glad to see him progressing well, and every milestone he
reaches is cause for celebration, the presence of a younger child made
us wonderfully happy (for her) and incredibly sad (for him) at the
same time.
On Jul 23, 7:21 am, Jenny Moretter <jen...@generalparts.com> wrote:
> Mackenzie loves for us to read books to her. We are trying to get her to identify different objects and colors. She does well pointing out objects but still struggles with the colors. I have noticed that if we give her options to choose from it makes it much easier but if you simply ask her the color she can not tell you.
>
> I have to laugh when you say escape artist, we can not get Mackenzie to go off and play without us being right there or her sister.
>
> From: sotos-syndrom...@googlegroups.com [mailto:sotos-syndrom...@googlegroups.com] On Behalf Of Marie Jayne Riemer
> Sent: Thursday, July 23, 2009 7:12 AM
> To: sotos-syndrom...@googlegroups.com
> Subject: RE: We're hoping to get a broader audience
>
> Some days anyway, he will sit for quite awhile paging thru books. Otheer days you cant get him to stay put anywhere!
>
> He is an escape artist too, i cant count how many times he has snuck outside this summer without a big person chaperone!
>
> MJ
>
> Marie J.Riemer mjrie...@hotmail.com
>
>
>
> ...
>
> read more »- Hide quoted text -
those melancholy moments where you realize that the younger child has
already surpassed the older child with Sotos Syndrom. Our youngest is
reaching all expected milestones in a timely manner and is already
walking along furniture and playing with vocalizations. She will turn
one in October. For Gideon, those behaviors came much, much later.
While we are glad to see him progressing well, and every milestone he
reaches is cause for celebration, the presence of a younger child made
us wonderfully happy (for her) and incredibly sad (for him) at the
same time.
On Jul 23, 7:21 am, Jenny Moretter <jen...@generalparts.com> wrote:
> Mackenzie loves for us to read books to her. We are trying to get her to identify different objects and colors. She does well pointing out objects but still struggles with the colors. I have noticed that if we give her options to choose from it makes it much easier but if you simply ask her the color she can not tell you.
>
> I have to laugh when you say escape artist, we can not get Mackenzie to go off and play without us being right there or her sister.
>
> From: sotos-syndrom...@googlegroups.com [mailto:sotos-syndrom...@googlegroups.com] On Behalf Of Marie Jayne Riemer
> Sent: Thursday, July 23, 2009 7:12 AM
> To: sotos-syndrom...@googlegroups.com
> Subject: RE: We're hoping to get a broader audience
>
> Some days anyway, he will sit for quite awhile paging thru books. Otheer days you cant get him to stay put anywhere!
>
> He is an escape artist too, i cant count how many times he has snuck outside this summer without a big person chaperone!
>
> MJ
>
>
>
>
> > Date: Wed, 22 Jul 2009 20:42:30 -0700
> > Subject: Re: We're hoping to get a broader audience
> > From: dunc...@msn.com
> > Subject: Re: We're hoping to get a broader audience
>
> read more »- Hide quoted text -
Jenny Moretter
Jul 23, 2009, 10:51:54 AM7/23/09
to sotos-syndrom...@googlegroups.com
I agree with you. I have a niece who was born 2 week after Mackenzie and she is so smart and learning things relatively fast. It is often sad to see her and Mackenzie together because they are so incredibly different and they are the same age. For me right now the sad part is seeing all the other children getting ready to start kindergarten next year and our daughter is not going to be able to go yet being she is behind. We brought her in for her screening and to see other children being able to color, draw, identify objects and just play made it hard for us to watch. Nice part is that with the school district they do offer services that will help her progress to where she needs to be.
Marie Jayne Riemer
Jul 23, 2009, 10:57:03 AM7/23/09
to sotos-syndrom...@googlegroups.com
I get hit with sadness at times very much unexpected. I get people telling me to just "get over it" and be happy for the progress made on Gideons and Elaura(Gideons younger sister) part.
I found you almost have to grieve what would have been your normal childs experience before you can celebrate the accomplisments.
I found you almost have to grieve what would have been your normal childs experience before you can celebrate the accomplisments.
Marie J.Riemer mjri...@hotmail.com
> From: jen...@generalparts.com
> To: sotos-syndrom...@googlegroups.com
Jenny Moretter
Jul 23, 2009, 12:11:48 PM7/23/09
to sotos-syndrom...@googlegroups.com
We have had our share of tears and triumphs. I too get frustrated when people tell us to appreciate it the small things. It is not that we do not appreciate or recognize the achievements they are making, it is sad for us to think what a struggle it was for our children to get there.
> </html
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