--Dear Sarah,
If your son has been in geno testing his features should have been a
red flag. My geno doc said that my son has all the features of sotos.
If your son has an advanced bone age that is the biggest sign. My
geno doc said the testing that is now available is still not a 100%
sure. Only about 70% of sotos kids show a problem with the 5th
chromo. At 18 months my son had the bone age of a 4 year old.
He has a high forehead, high palate, down slating eyes, low muscle
tone, advanced bone age, some brain matter signs and is very large
for his age. He is 2 years and 5 months. His height is 42" and He
weighs 46 pounds. I know what your going through. I have 3 older
children who are honor roll kids. Max was my angel though. He taught
me patience and empathy. I am so proud of him and his progress.
People often stare at him when we go places and I think God send him
to me for a reason. People are drawn to him. Alot of people come up
to us and ask about his beautiful hair or his light blue eyes. He is
a miracle and I hope you find all the positives in your son. It's a
long road but you are not on it alone.
                        Kiss him for me.
                            Angie W.







- In Sotosyndrome@yahoogroups.com, "Sarah" <nelson.sarah1@c...>
wrote:
> I just recently heard about this syndrome.. my son is 5 and his
> teacher at school sent it home for me to read.. the more i read
> online about it the more im 90% sure this is what my son has!! How
do
> I go about getting a doctor to test for this?? I'm in Oregon if
that
> helps. He's has TONS of genitic testing and everything came back
> negitive.. just a little background on him...
>
> He's 5 (almost may3rd birthday) when had his tonsils out due to
> breathing problems with them the ENT doc said he has a high and
> narrow arch in his mouth.. the big issue is he isn't talking 100%
or
> even 50% .. he's come a long way in the past two years but i cant
> convince them to give him more than 30 min a week ST thru Early
> Intervention.  He got his first tooth at 3 months old.. never
thought
> anything of it untill i started reading about Soto on the net..
> didnt' walk until 20 months, he's very frustrated all the time due
to
> speach issues.. he's really smart.. been able to spell his name
since
> he was 2, can draw awesome but cant verbilize hardly anything!
>
> Sorry if this is just a babble but i've been online for 4 hours
> reading about Soto and found this and I think it's time for me to
go
> to bed! :) Have a good night all!
>
> Sarah

--Hello,
    My son Max had almost all his teeth at 4 months of age.
When He was about a year old I took him to our ped. dentist and
found out he had flakey enamel. He had oral surgery and they cut the
nerves to his top front teeth and bonded his top teeth. When we went
back to the dentist his teeth were still flaking so they rebonded
his front teeth and had to remove one of his canine teeth.I was told
this is a common problem with sotos because they get theit teeth so
early.         Best wishes
                  angie-Max's mom




- In Sotosyndrome@yahoogroups.com, "Michelle B" <bensmum1111@y...>
wrote:
> Hi everyone,
>
> Just a quick question: Is it more common for children with
> Sotos/overgrowth syndromes to have a larger than average gap
between
> their front teeth? My son has a pretty big gap, and I've noticed a
> few others out there. Sorry if it seems like a silly question, its
> just that I've noticed it a few times when viewing pics on here
and
> other sites, and its got me wondering.
>
> We are having our first meeting with a pediatric neuro this coming
> week, we're going to bring up the possibility of overgrowth with
her
> (and I noticed my ped. mentioned our son's off the chart growth in
> his referral note to the neuro *without my prompting*! Isn't it
nice
> to see your doc checking things you're worried about without
having
> to push?)
>
> Thanks for any feedback, folks!
>
> Michelle, mom to Ben (5) high functioning autism, simple and
complex
> partial seizures and ???really big for his age, don't know if that
> means anything yet.

I just recently heard about this syndrome.. my son is 5 and his
teacher at school sent it home for me to read.. the more i read
online about it the more im 90% sure this is what my son has!! How do
I go about getting a doctor to test for this?? I'm in Oregon if that
helps. He's has TONS of genitic testing and everything came back
negitive.. just a little background on him...

He's 5 (almost may3rd birthday) when had his tonsils out due to
breathing problems with them the ENT doc said he has a high and
narrow arch in his mouth.. the big issue is he isn't talking 100% or
even 50% .. he's come a long way in the past two years but i cant
convince them to give him more than 30 min a week ST thru Early
Intervention.  He got his first tooth at 3 months old.. never thought
anything of it untill i started reading about Soto on the net..
didnt' walk until 20 months, he's very frustrated all the time due to
speach issues.. he's really smart.. been able to spell his name since
he was 2, can draw awesome but cant verbilize hardly anything!

Sorry if this is just a babble but i've been online for 4 hours
reading about Soto and found this and I think it's time for me to go
to bed! :) Have a good night all!

Sarah

-----Original Message-----
From: mizjunglejane [mailto:mizjunglejane@...]
Sent: Friday, April 02, 2004 11:46 PM
To: Sotosyndrome@yahoogroups.com
Subject: [Sotosyndrome] On teeth and MRIs

Just wanted to add my two cents - It is my understanding that not all
Sotos children have abnormal MRIs. This is why it is not always a
positive indicator. My Emily Rose cut her teeth early ( Started at 4
mos. ). By the time she was 15 mos. she had a full set of teeth ( the
dentist was surprised! ). This caused her problems because her front
teeth came in without enamel on them. She has areally wonderful
pediatric specialist. When she was 3. she had to have 2 stainless
steel caps, and he did this in the hospital as outpatient surgery
with Emily under sedation. This was truly a blessing! Now that she is
shedding her baby teeth, the larger permanent teeth make her look
like a different child! Jungle Jane



Please check the Sotos Syndrome Support Association Home Page at http:/www.well.com/user/sssa/

Hi
I was wondering the same, my amos 2 1/2 also has little teeth
sparcely spaced, and I was going to take him to the dentist but I
really do not think he would sit there,, I also was wondering if they
do change once the little ones fall out ??
he has gaps between all the front ones.

Thanx
Donna and AMos

--- In Sotosyndrome@yahoogroups.com, "Michelle B"
wrote:
> Hi everyone,
>
> Just a quick question: Is it more common for children with
> Sotos/overgrowth syndromes to have a larger than average gap
between
> their front teeth? My son has a pretty big gap, and I've noticed a
> few others out there. Sorry if it seems like a silly question, its
> just that I've noticed it a few times when viewing pics on here and
> other sites, and its got me wondering.
>
> We are having our first meeting with a pediatric neuro this coming
> week, we're going to bring up the possibility of overgrowth with
her
> (and I noticed my ped. mentioned our son's off the chart growth in
> his referral note to the neuro *without my prompting*! Isn't it
nice
> to see your doc checking things you're worried about without having
> to push?)
>
> Thanks for any feedback, folks!
>
> Michelle, mom to Ben (5) high functioning autism, simple and
complex
> partial seizures and ???really big for his age, don't know if that
> means anything yet.



Please check the Sotos Syndrome Support Association Home Page at http:/www.well.com/user/sssa/
Yahoo! Groups Links

<*> To visit your group on the web, go to:
http://groups.yahoo.com/group/Sotosyndrome/

<*> To unsubscribe from this group, send an email to:
Sotosyndrome-unsubscribe@yahoogroups.com

<*> Your use of Yahoo! Groups is subject to:
http://docs.yahoo.com/info/terms/

----- Original Message -----

From: Pam L

To: Sotosyndrome@yahoogroups.com

Sent: Saturday, April 03, 2004 11:08 AM

Subject: RE: [Sotosyndrome] Re: question about teeth

Hi,

I certainly am not a dentist or orthodontist….but what I read or was told (don’t recall where I got this info…sorry) was that gaps in between their baby teeth is actually better than closely spaced baby teeth.  When the baby teeth fall out there is more room for the bigger 2^nd/adult teeth to come in without as much crowding.  It made sense theoretically to me when I got that info.  Our son has small gaps between his baby teeth….we are hoping he is not doomed to wear braces like his mom and dad both did…we both had too many teeth for our mouths. 

Pam J   

 

  

 

-----Original Message-----
From: gabby24777 [mailto:gabby24777@...]
Sent: Friday, April 02, 2004 9:23 PM
To: Sotosyndrome@yahoogroups.com
Subject: [Sotosyndrome] Re: question about teeth

 

Hi
I was wondering the same, my amos 2 1/2 also has little teeth
sparcely spaced, and I was going to take him to the dentist but I
really do not think he would sit there,, I also was wondering if they
do change once the little ones fall out ??
he has gaps between all the front ones.

Thanx
Donna and AMos

--- In Sotosyndrome@yahoogroups.com, "Michelle B" <bensmum1111@y...>
wrote:
> Hi everyone,
>
> Just a quick question: Is it more common for children with
> Sotos/overgrowth syndromes to have a larger than average gap
between
> their front teeth? My son has a pretty big gap, and I've noticed a
> few others out there. Sorry if it seems like a silly question, its
> just that I've noticed it a few times when viewing pics on here and
> other sites, and its got me wondering.
>
> We are having our first meeting with a pediatric neuro this coming
> week, we're going to bring up the possibility of overgrowth with
her
> (and I noticed my ped. mentioned our son's off the chart growth in
> his referral note to the neuro *without my prompting*! Isn't it
nice
> to see your doc checking things you're worried about without having
> to push?)
>
> Thanks for any feedback, folks!
>
> Michelle, mom to Ben (5) high functioning autism, simple and
complex
> partial seizures and ???really big for his age, don't know if that
> means anything yet.



Please check the Sotos Syndrome Support Association Home Page at http:/www.well.com/user/sssa/

Please check the Sotos Syndrome Support Association Home Page at http:/www.well.com/user/sssa/

Jacob doesn't have any larger than normal spaces... but he has an
underbite... (where the bottom teeth sit in front of the top teeth).... and
some crouding...
   Jenny
   ----- Original Message -----
   From: "gabby24777" <gabby24777@...>
   To: <Sotosyndrome@yahoogroups.com>
   Sent: Friday, April 02, 2004 9:23 PM
   Subject: [Sotosyndrome] Re: question about teeth


   > Hi
   > I was wondering the same, my amos 2 1/2 also has little teeth
   > sparcely spaced, and I was going to take him to the dentist but I
   > really do not think he would sit there,, I also was wondering if they
   > do change once the little ones fall out ??
   > he has gaps between all the front ones.
   >
   > Thanx
   > Donna and AMos
   >
   > --- In Sotosyndrome@yahoogroups.com, "Michelle B" <bensmum1111@y...>
   > wrote:
   > > Hi everyone,
   > >
   > > Just a quick question: Is it more common for children with
   > > Sotos/overgrowth syndromes to have a larger than average gap
   > between
   > > their front teeth? My son has a pretty big gap, and I've noticed a
   > > few others out there. Sorry if it seems like a silly question, its
   > > just that I've noticed it a few times when viewing pics on here and
   > > other sites, and its got me wondering.
   > >
   > > We are having our first meeting with a pediatric neuro this coming
   > > week, we're going to bring up the possibility of overgrowth with
   > her
   > > (and I noticed my ped. mentioned our son's off the chart growth in
   > > his referral note to the neuro *without my prompting*! Isn't it
   > nice
   > > to see your doc checking things you're worried about without having
   > > to push?)
   > >
   > > Thanks for any feedback, folks!
   > >
   > > Michelle, mom to Ben (5) high functioning autism, simple and
   > complex
   > > partial seizures and ???really big for his age, don't know if that
   > > means anything yet.
   >
   >
   >
   > Please check the Sotos Syndrome Support Association Home Page at
http:/www.well.com/user/sssa/
   > Yahoo! Groups Links
   >
   >
   >
   >
   >

Just wanted to add my two cents - It is my understanding that not all
Sotos children have abnormal MRIs. This is why it is not always a
positive indicator. My Emily Rose cut her teeth early ( Started at 4
mos. ). By the time she was 15 mos. she had a full set of teeth ( the
dentist was surprised! ). This caused her problems because her front
teeth came in without enamel on them. She has areally wonderful
pediatric specialist. When she was 3. she had to have 2 stainless
steel caps, and he did this in the hospital as outpatient surgery
with Emily under sedation. This was truly a blessing! Now that she is
shedding her baby teeth, the larger permanent teeth make her look
like a different child! Jungle Jane

Hi
I was wondering the same, my amos 2 1/2 also has little teeth
sparcely spaced, and I was going to take him to the dentist but I
really do not think he would sit there,, I also was wondering if they
do change once the little ones fall out ??
he has gaps between all the front ones.

Thanx
Donna and AMos

--- In Sotosyndrome@yahoogroups.com, "Michelle B" <bensmum1111@y...>
wrote:
> Hi everyone,
>
> Just a quick question: Is it more common for children with
> Sotos/overgrowth syndromes to have a larger than average gap
between
> their front teeth? My son has a pretty big gap, and I've noticed a
> few others out there. Sorry if it seems like a silly question, its
> just that I've noticed it a few times when viewing pics on here and
> other sites, and its got me wondering.
>
> We are having our first meeting with a pediatric neuro this coming
> week, we're going to bring up the possibility of overgrowth with
her
> (and I noticed my ped. mentioned our son's off the chart growth in
> his referral note to the neuro *without my prompting*! Isn't it
nice
> to see your doc checking things you're worried about without having
> to push?)
>
> Thanks for any feedback, folks!
>
> Michelle, mom to Ben (5) high functioning autism, simple and
complex
> partial seizures and ???really big for his age, don't know if that
> means anything yet.

Hi everyone,

Just a quick question: Is it more common for children with
Sotos/overgrowth syndromes to have a larger than average gap between
their front teeth? My son has a pretty big gap, and I've noticed a
few others out there. Sorry if it seems like a silly question, its
just that I've noticed it a few times when viewing pics on here and
other sites, and its got me wondering.

We are having our first meeting with a pediatric neuro this coming
week, we're going to bring up the possibility of overgrowth with her
(and I noticed my ped. mentioned our son's off the chart growth in
his referral note to the neuro *without my prompting*! Isn't it nice
to see your doc checking things you're worried about without having
to push?)

Thanks for any feedback, folks!

Michelle, mom to Ben (5) high functioning autism, simple and complex
partial seizures and ???really big for his age, don't know if that
means anything yet.

Teagan had a great 14th birthday today. We were waiting to hear when we
would be receiving her trike because we had received word that the funding
for it had been approved. Well, wouldn't you know it, I got the call this
morning that they wanted to deliver it!! It arrived at about 1:30pm, in time
to enjoy our nice spring day. They even supplied a birthday card for her.
She was so surprised and had a great time zooming around the neighbourhood
with her 15 year old sister. It was her sister that had enough and wanted to
come back home and Teagan was still wanting to stay out longer.

Guess I'll have to get back on a bike myself now, YIKES!! It's been awhile
:)

What a great day!!
Debbie (I can't believe my baby is 14)

Wow Sarah that has allways been one of my concerns. DSS or Fays over here
knocking on my door accusing me of harming my baby.  I have been told just
tell them to contact your local GP or Paediatrition and they will back up
your story and fight for you if they know your child

I dont think it will hapen though

Keep your chin up

Sue & Katie
----- Original Message -----
From: "Sarah_Mom_of_Ireland_Victoria" <beckboo296@...>
To: <Sotosyndrome@yahoogroups.com>
Sent: Thursday, April 01, 2004 7:07 AM
Subject: [Sotosyndrome] Update on Ireland


> We just got back from the follow-up with the ent.  He looked at her
> again, felt her nose, and told me again he doesn't think it is
> broken and even if it is there isn't anything to do about it at her
> age.  The nurse commented that she must have fallen again because
> she didn't have black eyes the other day.  I explained to her that
> Monday, I brought her in as soon as it happened, and she was still
> swelling and bruising Tuesday.  She seemed to accept the
> explanation, but to be clear I also told her that Ireland has low
> muscle tone and has had many falls, but this was the first one
> serious enough to take her to be checked out.  With the pediatrician
> I have never felt like I was under suspicion, but they made me feel
> this way Monday and today.  I hope they don't try to do my baby any
> favors and call dhr!  I know it would be well-intentioned, but the
> last thing she needs right now is strangers in her home, or, God
> forbid, her having to be in a stranger's home!  She is sitting in my
> lap right now, where she fell asleep after fussing and making it
> very clear she wanted to be with mom.  Thanks everyone for your
> replies.
> Sarah
>
>
> --- In Sotosyndrome@yahoogroups.com, CHERYL MARTIN
> <SNOWYOWL_44@Y...> wrote:
> > Hi Sarah,
> >   So sorry to hear about Irelands mishap.  You're
> > right when you said he could at least have taken a
> > x-ray to be sure.  That's seems kind of silly to me.
> > Hope everything turns out well.  Best of luck. Cheryl
>
>
>
>
>
> Please check the Sotos Syndrome Support Association Home Page at
http:/www.well.com/user/sssa/
> Yahoo! Groups Links
>
>
>
>

----- Original Message -----

From: Mark & Sheryl Havermann

To: Sotosyndrome@yahoogroups.com

Sent: Thursday, April 01, 2004 11:16 AM

Subject: RE: [Sotosyndrome] question

Cynthia-

A quick fix would be to have your pediatrician diagnose her with a learning disorder (and ADHD counts)...that will allow the school system to mark "other health impaired" on her records, and she automatically qualifies for resource help for as little time or as much time as is needed. This will help in the interim as you work towards a diagnosis with her, and get her the help she needs now. You could also solicit a "tutor" from a child in the upper grades at her school...

 

Do you think the "staring spells" you mentioned could be seizures?

Sheryl

-----Original Message-----
From: ladthedog2003 [mailto:ladthedog2003@...]
Sent: Wednesday, March 31, 2004 2:00 PM
To: Sotosyndrome@yahoogroups.com
Subject: [Sotosyndrome] question

hello i had post in the past about soto's syndrome my daughter karina
is a potential as having it but not tested yet.my question is this
all her MRI and EEG'S have come back normal her educational
evaluation is on target IQ is between 98-104.But she still failing
the third grade level only spelling is an A all other subject from
reading to math to social studies are F's she reading at the 2nd
grade level and will not pass her grade level.But since her IQ level
is normal they wont put her in ESE program and the school has no
tutoring services for her either unless i pay for them which is about
45, an hour. her insurance doesnt cover that tried that route.my
question is now since we have schedule an physcological evaluation
and have an appointment with a neurologist developmentalist
pediatrician schedule next month .do any soto's kids have the same
problem's? it mostly her staring spells and her not being able to
comprehend her work or reading assignments than how could she score
high on the IQ level.we are also looking into a gentics in our
hometown as well.and i have also e-mailed and talked to dr. schaffer
as well. anyway we are all stump with everything else since the MRI
and EEG WHERE normal as well we have two of them done.thanx for
letting me post cynthia



Please check the Sotos Syndrome Support Association Home Page at http:/www.well.com/user/sssa/




Please check the Sotos Syndrome Support Association Home Page at http:/www.well.com/user/sssa/

Julie I am not a pharmasist but a friend of mine is so I will ask for you
but I go for weight equivalent except for antibiotics or dr prescribed meds.
I asume they would know more than me
Sue
----- Original Message -----
From: "mcgishome" <j_mccamish@...>
To: <Sotosyndrome@yahoogroups.com>
Sent: Friday, April 02, 2004 2:17 AM
Subject: [Sotosyndrome] Meds in general


> Does anyone know the answer to this ?  For most meds and vitamins,
> you look at dosage amounts and it says " ages 5 to 12 " or " weight
> 45 to 60 lbs [ disclaimer to those who use kg, I don't know that
> conversion by heart yet ] " ... and you would normally chose what is
> appropriate for your child.  For things targeted to weight or age
> though, for Sotos children shouldn't you consider the physical age
> and size rather than the chronological age ?  Like in our case -
> Cory has just turned 6 but is the size of a 9 year old.  So I would
> dose based upon actual weight and an age of 9 because if I dosed
> based upon an age of 6 it wouldn't be accurate because that doesn't
> reflect what his body actually is ?  I am just asking because most
> meds change over to an adult dosage at physical age 12 and he, Cory,
> will be there much sooner than his 12th birthday.  Any pharmacists
> out there in this group ? :)  Thanks ... Julie McCamish
>
>
>
>
>
>
> Please check the Sotos Syndrome Support Association Home Page at
http:/www.well.com/user/sssa/
> Yahoo! Groups Links
>
>
>
>

Hi Julie
We have already had a tooth of Katies taken out when she was 3 because she
had developed an abses on it.  With her heart they didn't want her to get a
blood infection.  We had the dentist take it out.  she just layed there,
normally she wouldnt keep still for 2 seconds.  The only t6ime she cried was
when I was holding the gauze in her mouth to stop the bleeding.
Over the past 5 years I have learnt to be a real PUSHIE mum and will not
give in until something is done to investigate my concerns.  Now all I have
to do is ring up our Paediatrition and request a test or referal and he will
do it.  Find a Paediatrition who really cares about you and your child.
We had a horrible doctor the other day in ER.  Katie forgot to use her
pedals to stop her bike and ended up with three stitches in her chin.  We
waited 4 hours to see a doctor, I explained Katies delay and told him to
treat her like a 3 year old.  He The Dr then had the ordacity to ask her to
remove the bandage from her chin herself.  He wouldnt do it so I did.  He
then put a sterile cover over her face  and put some local anasetic via a
needle in the middle of the cut ( which was gaping open and about 3 cm long)
without warning or holding her down. I was pissed off with his attitude by
this time so I let him go knowing that she would complain.  She did.  Katie
kicked him in the face and thumped him in the stomach.  The dR realised that
he needed help then and that the mother did Know something about her
daughter.
What an Arrogant @#$%&^ pIG.
----- Original Message -----
From: "mcgishome" <j_mccamish@...>
To: <Sotosyndrome@yahoogroups.com>
Sent: Thursday, April 01, 2004 4:16 AM
Subject: [Sotosyndrome] Re: Ireland's nose


> Sympathy here too .... My 15 yr old daughter got a gash on her
> forehead when 18 months old that required 3 stitches ( right at the
> hairline, cut it when she fell down on the metal track for the
> sliding glass door on the patio.  She doesn' have Sotos.  Cory,
> though, jumped off of a cabinet at his dad's work place and nearly
> required dental surgery the summer he was 2 1/2.  The fall jammed
> one of his baby teeth partially back up into the gumline .... but
> with time, it straightened out.  Fortunately, we were already seeing
> a pediatric dentist at that point anyways.  Should have had a clue
> about Cory and the attention issues of Sotos kids when our regular
> family dentist said, " sorry, I know I have taken care of other
> family members, but I can't do Cory.  He is too active and wont' sit
> still, I will refer him to a pediatric dentist ..... " ... brings up
> the question " how many of you see pediatric dentists with your
> Sotos or Sotos like children because they won't be manageable by a
> regular dentist ? " ... Julie
>
> --- In Sotosyndrome@yahoogroups.com, "Pam L" <pamlepro@c...> wrote:
> > Oh Sarah,
> > I can sympathize with you!!!!!!  Kevin went to the hospital Monday
> > afternoon for a gash on the back of his head.ended up with 3-4
> staples
> > in the back of his head.  He went down a small embankment in his
> wagon
> > or fell while pulling it up the embankment.  He thinks it is so
> fun to
> > push his wagon down it and then pull it up himself.  I had run in
> the
> > house to grab my insurance card.  I was outside with him making
> phone
> > calls so he could enjoy the nice weather and realized I left my
> card on
> > the counter.  I was in and out with in 30 seconds and it happened
> then.
> > I felt horrible because I did not see it happen.  He is doing
> fine.  I
> > hope all is alright with Ireland!
> > Pam :-)
> >
> >
> >
> > -----Original Message-----
> > From: Sarah_Mom_of_Ireland_Victoria [mailto:beckboo296@h...]
> > Sent: Wednesday, March 31, 2004 1:34 AM
> > To: Sotosyndrome@yahoogroups.com
> > Subject: [Sotosyndrome] Ireland's nose
> >
> > Hi all,
> > Ireland took a tumble Monday and possibly broke her nose.  I
> rushed
> > her to the ent, who just looked at it and said he thought it was
> just
> > swelling and bring her back Wednesday after the swelling has gone
> down
> > so he can see better.  Well, Tuesday she got up with
> much
> > more swelling and two black eyes.  Now her tummy is swollen and
> hard.
> > I know she isn't constipated because she is having plenty
> of
> > poops, not to mention some very manly gas for an 18 month old
> girl.
> > Its difficult to tell how she really feels because she is pretty
> happy
> > most of the time, and seems to be now.  Well, I have to take her
> back
> > to the doc tomorrow, so I'll let ya'll know what he
> says.
> > If they don't arrest me for abuse!  (just kidding, I hope....)  I
> just
> > wish he had done an exray or mri or something cuz she hit
> that
> > window seal really hard!  (she stood up on my bed -thanks pt- and
> then
> > lost her balance and fell onto the window seal -think 2 X 4
> hitting
> > her in across the bridge of the nose.) I hope she's okay.  It is
> so
> > hard to tell with her.  Keep fingers crossed....
> > Sarah mom of Ireland, 18 months with Sotos
> >
> >
> >
> > Please check the Sotos Syndrome Support Association Home Page at
> > http:/www.well.com/user/sssa/
> >
> >
>
>
>
>
>
> Please check the Sotos Syndrome Support Association Home Page at
http:/www.well.com/user/sssa/
> Yahoo! Groups Links
>
>
>
>

--- In Sotosyndrome@yahoogroups.com, "Mark & Sheryl Havermann"
<mjhaverm1@c...> wrote:
> Julie-
> I am a pharmacist, and a mom to a little girl with Sotos, and I
would
> recommend dosing by weight most of the time, especially for
anything that is
> available over the counter. There are a few instances when this
wouldn't
> hold true, simply because a child's kidney and/or liver function
isn't equal
> to that of an adult's, and those are the main pathways that the
drug is
> eliminated from the body. Those medications are primarily
prescription only.
> If you ever have questions, don't hesitate to call your
pediatrician or
> pharmacist. (By the way..for what it's worth... 1 kilogram is
equal to 2.2
> pounds, so you divide your child's weight in pounds by 2.2 to get
the
> kilogram weight.)
> Sheryl

Sheryl,  I knew the conversion for kilos in the back of my mind, but
I can't do it in my head yet without taking a serious stop to think
about it ;-) .... We are moving to Australia in December and I am
bilingual with the speed that the cars drive and distances (
kilometers ) but I am not yet bilingual with the kilos ;-) ..... I
will get in step really fast though when I am faced with kilos and
nothing else.  Like sink or swim to remember it when you must use it
every day ;-) ... Julie

HAPPY BIRTHDAY TO YOU !!! HAVE FUN TODAY.
I HOPE WE CAN TALK AGAIN. ASK YOUR MOMMY.

JASON

-----Original Message-----
From: mcgishome [mailto:j_mccamish@...]
Sent: Thursday, April 01, 2004 10:48 AM
To: Sotosyndrome@yahoogroups.com
Subject: [Sotosyndrome] Meds in general

Does anyone know the answer to this ?  For most meds and vitamins,
you look at dosage amounts and it says " ages 5 to 12 " or " weight
45 to 60 lbs [ disclaimer to those who use kg, I don't know that
conversion by heart yet ] " ... and you would normally chose what is
appropriate for your child.  For things targeted to weight or age
though, for Sotos children shouldn't you consider the physical age
and size rather than the chronological age ?  Like in our case -
Cory has just turned 6 but is the size of a 9 year old.  So I would
dose based upon actual weight and an age of 9 because if I dosed
based upon an age of 6 it wouldn't be accurate because that doesn't
reflect what his body actually is ?  I am just asking because most
meds change over to an adult dosage at physical age 12 and he, Cory,
will be there much sooner than his 12th birthday.  Any pharmacists
out there in this group ? :)  Thanks ... Julie McCamish





Please check the Sotos Syndrome Support Association Home Page at http:/www.well.com/user/sssa/

--- In Sotosyndrome@yahoogroups.com, "Beata" <beata_prus@y...> wrote:
> I remember when Jason was sent for his MRI .... He was about 8
> months old..
> Hospital record states:
>
> EXAM: 23/08/94 MRI MINOR ASSESSMENT -FAILED SEDATE.
>
> The patient was assessed, but could not be sedated successfuly.
For
> this reason , this examination was discontinued - no images were
> obtained. This decision was made with consultation between
patient's
> parent and Diagnostic Imaging staff.
>
> I had to bring Jason back for another "attempt". This time they
made
> sure they gave him a double dose of medication. It worked..
>
> My ped always goes by weight when prescribing meds for my kids.
>
> Beata (Jason,10 Sotos-like)

Beata,

I usally go by weight as would the pediatrician ( and mine does ).
My main concern was for general vitamins and OTC type things that
you would get on the health food or vitamin aisle.  I am giving Cory
a few things - 2 different kinds of oils, a multi B-complex vitamin
that contains extra vitamin C in it and some gingko bilboa.  I want
to make sure that these aren't in harmful amounts.  For the most
part, I think moderate overages are ok but I know that there are
some vitamins and minerals out there that can be toxic if
overdosed.  I think though, that even for these, toxic amounts would
be like 5000% more than normal ;-) and this isn't the case here.  I
just want to make sure my child gets the vitamins he needs to
funtion but since I am doing this piece meal to supplement the
multivitamin which doesn't have enough of somethings and doesn't
have some things at all, I want to make sure that it is in
reasonable amounts.  That is my specific concern and more generally,
there are things out there like adult dosage tylenol and ibuprofen
where the bottle says " adult dosage 12 and over ".  When does a
Sotos child under those circumstances qualify to get the adult
dose ?    Julie

I remember when Jason was sent for his MRI .... He was about 8
months old..
Hospital record states:

EXAM: 23/08/94 MRI MINOR ASSESSMENT -FAILED SEDATE.

The patient was assessed, but could not be sedated successfuly. For
this reason , this examination was discontinued - no images were
obtained. This decision was made with consultation between patient's
parent and Diagnostic Imaging staff.

I had to bring Jason back for another "attempt". This time they made
sure they gave him a double dose of medication. It worked..

My ped always goes by weight when prescribing meds for my kids.

Beata (Jason,10 Sotos-like)

don't know why this double posted, sorry everyone ....  Julie

Does anyone know the answer to this ?  For most meds and vitamins,
you look at dosage amounts and it says " ages 5 to 12 " or " weight
45 to 60 lbs [ disclaimer to those who use kg, I don't know that
conversion by heart yet ] " ... and you would normally chose what is
appropriate for your child.  For things targeted to weight or age
though, for Sotos children shouldn't you consider the physical age
and size rather than the chronological age ?  Like in our case -
Cory has just turned 6 but is the size of a 9 year old.  So I would
dose based upon actual weight and an age of 9 because if I dosed
based upon an age of 6 it wouldn't be accurate because that doesn't
reflect what his body actually is ?  I am just asking because most
meds change over to an adult dosage at physical age 12 and he, Cory,
will be there much sooner than his 12th birthday.  Any pharmacists
out there in this group ? :)  Thanks ... Julie McCamish

----- Original Message -----

From: mcgishome

To: Sotosyndrome@yahoogroups.com

Sent: Thursday, April 01, 2004 8:47 AM

Subject: [Sotosyndrome] Meds in general

Does anyone know the answer to this ?  For most meds and vitamins,
you look at dosage amounts and it says " ages 5 to 12 " or " weight
45 to 60 lbs [ disclaimer to those who use kg, I don't know that
conversion by heart yet ] " ... and you would normally chose what is
appropriate for your child.  For things targeted to weight or age
though, for Sotos children shouldn't you consider the physical age
and size rather than the chronological age ?  Like in our case -
Cory has just turned 6 but is the size of a 9 year old.  So I would
dose based upon actual weight and an age of 9 because if I dosed
based upon an age of 6 it wouldn't be accurate because that doesn't
reflect what his body actually is ?  I am just asking because most
meds change over to an adult dosage at physical age 12 and he, Cory,
will be there much sooner than his 12th birthday.  Any pharmacists
out there in this group ? :)  Thanks ... Julie McCamish





Please check the Sotos Syndrome Support Association Home Page at http:/www.well.com/user/sssa/

Does anyone know the answer to this ?  For most meds and vitamins,
you look at dosage amounts and it says " ages 5 to 12 " or " weight
45 to 60 lbs [ disclaimer to those who use kg, I don't know that
conversion by heart yet ] " ... and you would normally chose what is
appropriate for your child.  For things targeted to weight or age
though, for Sotos children shouldn't you consider the physical age
and size rather than the chronological age ?  Like in our case -
Cory has just turned 6 but is the size of a 9 year old.  So I would
dose based upon actual weight and an age of 9 because if I dosed
based upon an age of 6 it wouldn't be accurate because that doesn't
reflect what his body actually is ?  I am just asking because most
meds change over to an adult dosage at physical age 12 and he, Cory,
will be there much sooner than his 12th birthday.  Any pharmacists
out there in this group ? :)  Thanks ... Julie McCamish

 

That goes without saying.... and I was a daycare  teacher too....   I had an abused child in my toddler class..... We kept up with CPS..... the little girl died a short time later.. THe step dad threw he down a flight of stairs...

Jenny

----- Original Message -----

From: Kellie Siers

To: Sotosyndrome@yahoogroups.com

Sent: Thursday, April 01, 2004 1:40 AM

Subject: [Sotosyndrome] Bruising in Daycare

Just thought I'd fill you all in on something.  A few years ago I worked in an ER and a little girl came in with bruising after having been at daycare.  We all believed the Mother that it happened in the daycare and so did the cops.  The cops explained to her though that since she didn't call them BEFORE she left the daycare they had to investigate her first.

 

This girl was two years old and when they did a rape kit it came back positive.

 

I heard on the news that charges were filed against the daycare worker. 

 

I know most daycare workers are great people (my mil is one) but if you find a bruise make them explain it and if you think it's suspicious then call the police.

 

Kellie

Rotten Rottie Mama
www.kelliescaninetraining.com

----- Original Message -----

From: Robin Hopkins

To: Sotosyndrome@yahoogroups.com

Sent: Wednesday, March 31, 2004 5:53 PM

Subject: Re: [Sotosyndrome] Update on Ireland

Sarah,

 

I do remember how you are fealing,  I remember when Chris was growing up, He was and somewhat still is, clumbsy.  When I would take him in for a check up or into daycare, they would have me stand there while they would check him over, and I would have to explain every bump or bruise on him.  Grrrrrrrrrr.  O the memories, how they stay with you when they make you feel like your unfit to be a mom.

 

I would sit and think of ways that I could have prevented him from falling or bumping into things.  But I figured out that he took just as many spills in daycare as he did at home, sooooo, I started checking him out when I picked him up, infront of them of course, and if he had any bumps or bruses, I would make them explain. LOL

 

Been in your shoes,

 

Robin~Chris' Mom~Classic Sotos

Sarah_Mom_of_Ireland_Victoria <beckboo296@...> wrote:

We just got back from the follow-up with the ent.  He looked at her
again, felt her nose, and told me again he doesn't think it is
broken and even if it is there isn't anything to do about it at her
age.  The nurse commented that she must have fallen again because
she didn't have black eyes the other day.  I explained to her that
Monday, I brought her in as soon as it happened, and she was still
swelling and bruising Tuesday.  She seemed to accept the
explanation, but to be clear I also told her that Ireland has low
muscle tone and has had many falls, but this was the first one
serious enough to take her to be checked out.  With the pediatrician
I have never felt like I was under suspicion, but they made me feel
this way Monday and today.  I hope they don't try to do my baby any
favors and call dhr!  I know it would be well-intentioned, but the
last thing she needs right now is strangers in her home, or, God
forbid, her having to be in a stranger's home!  She is sitting in my
lap right now, where she fell asleep after fussing and making it
very clear she wanted to be with mom.  Thanks everyone for your
replies.
Sarah


--- In Sotosyndrome@yahoogroups.com, CHERYL MARTIN
<SNOWYOWL_44@Y...> wrote:
> Hi Sarah,
>   So sorry to hear about Irelands mishap.  You're
> right when you said he could at least have taken a
> x-ray to be sure.  That's seems kind of silly to me.
> Hope everything turns out well.  Best of luck. Cheryl




Please check the Sotos Syndrome Support Association Home Page at http:/www.well.com/user/sssa/

---

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Please check the Sotos Syndrome Support Association Home Page at http:/www.well.com/user/sssa/




Please check the Sotos Syndrome Support Association Home Page at http:/www.well.com/user/sssa/