Sarah, I don;t have any helpful words however, I do know what you are
going through and I am feeling for you.  We spent the first hmmm
maybe 3 years of Finn's life in hospital or docs every month - the
first year every two or so weeks.  It is fraught and distressing and
I felt distraught and desperate that I could not help Finn more.  I
was exhausted and worn out from little sleep and worrying and
spending nights in A&E as well as all the hospital appointments for
blood work and waiting for results.  Strung out does not describe
it.  I think you are doing a great job just managing to find the time
to post and email as well as everything else. I cannot predict what
the pattern for Ireland will be, but can say that we have had about 4
clear months with Finn this year which is nothing short of a
miracle.  I seem to remember there was also a 6mth respite period
during his 3rd year, before it all kicked off again.  I feel from the
postings that it can improve over time as they gain some weight and
most importantly immunity.  My docs always said that there was
nothing wrong with Finn's immune system, but I am telling you there
definitely is.  It is only now at 5years old that we feel that he has
built up a little immunity to resist a cold turning into a chest
infection and antibiotics.  He had around 40 courses of antibiotics
up to 4 1/2 years.
Sarah, take care, look after yourself as well.  You have the strength
to see it through, I know it is hard, but you can do it.
I am in awe that you are managing all this as a single parent - I am
sure I would have sunk in that position.
Kind regards and Hugs
Miranda

--- In
UndiagnosedOvergrowthSyndromes@yahoogroups.com, "Sarah_Mom_of_Ireland_
Victoria" <beckboo296@h...> wrote:
> I'm going to have to now.  Woke up this morning and her fever's
> back.  I guess I knew this would happen.  The doc had said he would
> put another refill on her antibiotic, because it always takes
> several courses to clear her up, but then I guess he forgot to, so
> it wasn't enough anyway.  Her temp is up and her nose is running,
> and she is coughing and throwing up.  I'm afraid its going to end
up
> being back to the hospital soon.
> Sarah
>
>
> --- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "over
growth"
> <overgrowthdisorders@h...> wrote:
> >

Hi Susan
Welcome to the group.  I empathise with you over the 'not knowing'.
It is a truly difficult situation to be in.  It seems to me that all
the overgrowth syndromes are so rare and all have their own
seemingly'identifying' characteristics, but it then seems so hard to
get a dx if they do not have all the textbook markers.
Anyway, welcome.  I am sure that if there is anything anyone else can
help with, you will get a listening and supportive ear.
Take care
Miranda

--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "shannick145"
<shannick@j...> wrote:
> Hi Everyone
>
> I've just joined your Group.  I was so relieved to hear that there
is
> a group for undiagnosed overgrowth, as I find the not knowing bit
> harder to cope with than having a name for my daughter's problems.
>
> Shannon is 6 and has everything I have ever read about Sotos but
her
> Geneticist says he is sure she doesn't have this.  She is now
> undergoing tests for Bannayan-Riley-Rulbacava Syndrome, partly
> because she had a huge birthmark on her leg until she was about 3
and
> this apparently is a classic symtom of BRRS.  The physical
> desciptions I have read of this are quite accurate for her but
little
> is mentioned about her mild learning difficulties and autistic type
> behaviour.
>
> Speak to you soon
>
> Susan

Susan,
We are so glad to have you here.  If you need any info, just ask,
and maybe one of us will know.  If we don't know, we will still
listen if you just need to vent.  Sometimes, even if you have a
diagnosis, you still feel a little undiagnosed.  When I first found
out my daughter has sotos, I was so relieved to know, but as time
passes I find myself questioning, because there are so many
overgrowth syndromes, even though each one is very rare.  Welcome to
the Group.
Sarah



--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "shannick145"
<shannick@j...> wrote:
> Hi Everyone
>
> I've just joined your Group.  I was so relieved to hear that there
is
> a group for undiagnosed overgrowth, as I find the not knowing bit
> harder to cope with than having a name for my daughter's problems.
>
> Shannon is 6 and has everything I have ever read about Sotos but
her
> Geneticist says he is sure she doesn't have this.  She is now
> undergoing tests for Bannayan-Riley-Rulbacava Syndrome, partly
> because she had a huge birthmark on her leg until she was about 3
and
> this apparently is a classic symtom of BRRS.  The physical
> desciptions I have read of this are quite accurate for her but
little
> is mentioned about her mild learning difficulties and autistic
type
> behaviour.
>
> Speak to you soon
>
> Susan

Hi Everyone

I've just joined your Group.  I was so relieved to hear that there is
a group for undiagnosed overgrowth, as I find the not knowing bit
harder to cope with than having a name for my daughter's problems.

Shannon is 6 and has everything I have ever read about Sotos but her
Geneticist says he is sure she doesn't have this.  She is now
undergoing tests for Bannayan-Riley-Rulbacava Syndrome, partly
because she had a huge birthmark on her leg until she was about 3 and
this apparently is a classic symtom of BRRS.  The physical
desciptions I have read of this are quite accurate for her but little
is mentioned about her mild learning difficulties and autistic type
behaviour.

Speak to you soon

Susan

Just wanted to let everyone know that if anyone else has a certain
time of day, like in the mornings, and a different day of the week,
that would be better for them to chat, you can go into the calendar
and schedule a weekly, monthly, or just a one time chat.  All
members have access to this feature.
Sarah

Alright, Ireland finished her second course of antibiotics, and her
glands are still swollen.  Now she isn't on any antibiotics, but she
obviously still has infection.  Should I wait and see if it goes
away or gets worse, or should I take her on back to the doc?
Sarah

Sarah Hi
I don't know ABOUT glands per se, except to say that this used to
happen to Finn all the time and still does but more infrequently now.
He too was always on 2 or 3 courses of antibiotics to clear up
infections.  The only thing I would say is that when my neck glands
are swollen I normally have a very aching neck and smetimes a sore
throat.
Hope Ireland is feeling better though:)
Kind regards
Mirana

--- In
UndiagnosedOvergrowthSyndromes@yahoogroups.com, "Sarah_Mom_of_Ireland_
Victoria" <beckboo296@h...> wrote:
> Does anyone know anything about glands, especially in the neck,
that
> stay swollen for a long time?  Ireland was sick about a week ago,
> and she is feeling much better, but still has a lot of swollen
> glands or nodes or whatever they are called.  She is on her second
> course of antibiotics already.  Just wondering if anyone else had
> experienced this.  She is diagnosed at Sotos, but this is something
> I have never read about in Sotos information.
> Sarah

Hi everyone,
Just wanted to let ya'll know I just posted a new pic of Ireland,
the first one taken right after she was born.  It's a beauty, I hope
ya'll will have a look!
Sarah

Sarah the glands act as a sponge to catch infection.  Patricia


--- In
UndiagnosedOvergrowthSyndromes@yahoogroups.com, "Sarah_Mom_of_Ireland_
Victoria" <beckboo296@h...> wrote:
> Does anyone know anything about glands, especially in the neck,
that
> stay swollen for a long time?  Ireland was sick about a week ago,
> and she is feeling much better, but still has a lot of swollen
> glands or nodes or whatever they are called.  She is on her second
> course of antibiotics already.  Just wondering if anyone else had
> experienced this.  She is diagnosed at Sotos, but this is something
> I have never read about in Sotos information.
> Sarah

Does anyone know anything about glands, especially in the neck, that
stay swollen for a long time?  Ireland was sick about a week ago,
and she is feeling much better, but still has a lot of swollen
glands or nodes or whatever they are called.  She is on her second
course of antibiotics already.  Just wondering if anyone else had
experienced this.  She is diagnosed at Sotos, but this is something
I have never read about in Sotos information.
Sarah

Hi again
I have just noticed on the symptom list that you had these issues
with James.  Finn had this for the first year of his life and was
severely malnourished by the time we got him on CPAP.  How did these
probs manifest themselves with James?
I hope you don;t mind me asking.
Miranda

thank you Pete - I think so MOST of the time,but sometimes......:))
hmmm.  No really, he is very sweet, but has his moments(on a regular
basis:(  )  I am desperate to try and compare Sotos-like and
undiagnosed children to see what their similarities in looks are -
face shape etc.  You see, I knew before we went to Dr Cole that Finn
definitely did not have Classic Sotos.  He just does not have the
facial gestalt and I am of the opinion (just my opinion for myself)
that the facial gestalt is quite a major characteristic in the dx of
sotos.  So I am on my own mission now to try and find another
child/children in the world who look like him and maybe have enough
similar characteristics/symptoms to compare. We too have been through
years of being told ';oh he's just behind a bit, he'll catch up it's
just because he's big(!!!), don't worry it's just because he's been
so ill etc etc.  Until eventually, I started screaming and shouting
and doing my own research and uncovered Sotos-like syndrome which
finally led us to Dr Cole and our dx.  Hence now, my search to find
the children more similar to Finn in looks:))
Anyway, I am looking forward to seeing pics of James and I too hope
that by putting  a pic of Finn on, it will help someone else in their
search.
Take care
Miranda


--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "pete_83843"
<pete_83843@y...> wrote:
> PS  Finn is DARLING!  :)
>
>
> --- In
UndiagnosedOvergrowthSyndromes@yahoogroups.com, "finnedward1998"
<finnedward1998@y...> wrote:
> > Pete hi
> > I have a little boy who is now 5.  He has just got the same dx as
> > James from Dr Cole.  Is there any chance of you posting a pic on
the
> > site or emailing me a pic of James for me to compare?  No probs
if
> > you don;t want to, but would you take a look at Finn and see how
he
> > compares to James and let me know please if you get a chance?.
> > I would be really grateful if you could.
> > Thanks
> > MIranda (Finn 5)

Miranda,

Sure! If we can help anyone else, we surely want to.
I just have to figure out how to do it; I might have
to get my daughter (19y, next month) over here to help
me.
I'll try it in the next couple of days when there is a
bit of time. LOL

Thanks for asking,
Pete (mom to James, 9yrs, Sotos-Like)


Pete hi
                       I have a little boy who is now
5.  He has just got the same dx as
                       James from Dr Cole.  Is there
any chance of you posting a pic on the
                       site or emailing me a pic of
James for me to compare?  No probs if
                       you don;t want to, but would you
take a look at Finn and see how he
                       compares to James and let me
know please if you get a chance?.
                       I would be really grateful if
you could.
                       Thanks
                       MIranda (Finn 5)

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Just wanted to let all of the new members know there is a file in
the Database section called Karyotype.  If you know your child's
chromosome Karyotype, and don't mind sharing it, please go to the
database and fill out the chart.  It is my hope that as the site
grows, some members may be able to find common chromosome disorders
using the karyotype.
Sarah

Pete hi
I have a little boy who is now 5.  He has just got the same dx as
James from Dr Cole.  Is there any chance of you posting a pic on the
site or emailing me a pic of James for me to compare?  No probs if
you don;t want to, but would you take a look at Finn and see how he
compares to James and let me know please if you get a chance?.
I would be really grateful if you could.
Thanks
MIranda (Finn 5)

Hi everyone and thanks for starting this site.
Strangely, I have been thinking that I would really like to see a
group of sotos-like children and undiagnosed overgrowth children to
compare Finn to.  I just think that facial comparison may end up
being quite important in finally diagnosing this group of children.
Thanks for starting this.  I will add Finn to Sotos-like with Pam's
Kevin.
Kind regards
Miranda

Thank you so much for creating this user group and for inviting
me to join!

I will post tomorrow about my son who has an undiagnosed/un-
named overgrowth syndrome  as I am too tired tonight (helping
MIL & FIL wears me out).

Elizabeth

Thanks for the welcome!
I have been on the Sotos site for a couple of years
and gained TONS of helpful info. As we were
'undiagnosed' for seven years, the sound of this site
really intrigued me. I hope that our experience can
help others. Will write more at a later time.
Thanks again!
Pete (mom to James, 9yrs, Sotos-Like)
--- UndiagnosedOvergrowthSyndromes@yahoogroups.com
wrote:
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------------------------------------------------------------------------
>
> There is 1 message in this issue.
>
> Topics in this digest:
>
>       1. New members
>            From: "pajogr" <pajogr@...>
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 1
>    Date: Fri, 14 Nov 2003 02:51:27 -0000
>    From: "pajogr" <pajogr@...>
> Subject: New members
>
> WOO HOO growing by leaps and bounds. Hi Pam Hi
> Miranda and hi Pete?
>
> Patricia
>
>
>
>
________________________________________________________________________
>
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>
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Hey Pam!
I too was shocked to read that it was well-known among
pediatricians.  Mine had heard of it, once we got a diagnosis
elsewhere, but he had never thought of it for Ireland.  Everyone
thought it was her immune system, and that her large size was a
family trait (even me!).  Then it turns out that his nurse, Kate,
who also saw her every visit, had actually had a case when she was
doing her internship in another state (I forget which one)!  But she
didn't consider it, either!  After she was diagnosed and I told them
about it, it was like, "Oh, why didn't I think of that?"  The doctor
said he had thought it was mostly boys who got it.  Funny, one time
when I was waiting in his office, I read an article in Reader's
Digest about a woman who's two boys were so sick, and they even
thought she might be making them sick, because the couldn't find
anything, and all the symptoms were just like Ireland's, but then
when she finally researched it and flew her kids to where the
doctor, who the illness was named after, lived, they had this rare
disease.  I can't remember now what it was called, because I was
getting so excited, then I got to the part where it only affects
males, and my bubble popped!  But anyway, I'm going off on a
tangent.  As far as "Nevo", I had never heard of that either!  I
guess once they realized the two were the same they dropped the Nevo
name altogether, but I don't really know.
Sarah



--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "Pamela "
<pamlepro@c...> wrote:
> Hi there....it is Pam from the Sotos group!  :)
> Nice site!  I was shocked to see there is another name for Sotos
> Syndrome other than "Cerebral Gigantism".  I have never ever heard
> anyone on the Sotos list refer to it as "Nevo Syndrome" nor have I
> seen it in any of the literature.  Not even the stuff the SSSA
sends
> out when you join the group (many medical articles).
>
> If you don't mind, I must disagree with a line from the
> website "whonamedit" or whatever the site is called:
>
> "Sotos and collaborators in 1964 first defined this syndrome,
which
> was already well known to paediatricians."
>
> From what I have heard it is definitely NOT well known by
> pediatricians, even today forget about back then!  My pediatrician
> had never heard of it...and that is not uncommon.  Heck if they
know
> if it maybe some of these kids would not take so long to
diagnose.
> Honestly....not trying to be a nit-pick, but I think they are off
> base by saying it is "well known" to anyone but a family who is
> affected!  LOL!
>
> I hope this site helps parents who are searching for a
cause/reason
> for their kids problems.  I remember what it was like to not know
> what was causing my son's problems.  And can you believe none of
the
> professionals (i.e. neurologist, psychologist, pediatrician,
> neuropsychologist, ST & OT)  considered the possibility that him
> being above the 95% was relavent?!
>
> Have a great night!
> Pam :)

--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "beckboo296"
<beckboo296@h...> wrote:
> Thank you for posting the pictures of Kevin in the Sotos-Like
> Album.  He looks so sweet!
> Sarah

Thanks!  He is sweet especially when he is sleeping!  LOL!  If seeing
a pic of him can help someone then I don't mind posting them.
Actually, one of the other Sotos members saw a pic of him and thought
her son and Kevin were similar and she contacted me.  Well, after all
was said and done...her son was dx'd as Sotos-like...because she
pushed to see one of the experts.  So having someone to compare to
has already helped someone!

Chow!
Pam :)))

Hi there....it is Pam from the Sotos group!  :)
Nice site!  I was shocked to see there is another name for Sotos
Syndrome other than "Cerebral Gigantism".  I have never ever heard
anyone on the Sotos list refer to it as "Nevo Syndrome" nor have I
seen it in any of the literature.  Not even the stuff the SSSA sends
out when you join the group (many medical articles).

If you don't mind, I must disagree with a line from the
website "whonamedit" or whatever the site is called:

"Sotos and collaborators in 1964 first defined this syndrome, which
was already well known to paediatricians."

From what I have heard it is definitely NOT well known by
pediatricians, even today forget about back then!  My pediatrician
had never heard of it...and that is not uncommon.  Heck if they know
if it maybe some of these kids would not take so long to diagnose.
Honestly....not trying to be a nit-pick, but I think they are off
base by saying it is "well known" to anyone but a family who is
affected!  LOL!

I hope this site helps parents who are searching for a cause/reason
for their kids problems.  I remember what it was like to not know
what was causing my son's problems.  And can you believe none of the
professionals (i.e. neurologist, psychologist, pediatrician,
neuropsychologist, ST & OT)  considered the possibility that him
being above the 95% was relavent?!

Have a great night!
Pam :)

Patricia that is so funny!  When I saw Candra's birthday I thought I
would surprise you so when her birthday comes the site will get a
reminder!  Ireland recently had a birthday, and I had done that on
the sotos site, and it was so convenient having a computer let
people know, so I didn't have to say, "guess what?  It's her
birthday" you know?  A lot of people wished her happy birthday!
Yes, I guess great minds do think alike!  If I ever do get a
vacation, I think I will make you a temporary moderator while I'm
gone!  You'd be great.
Sarah


--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "pajogr"
<pajogr@a...> wrote:
> Sarah the reason I had asked for birthdates and questioned you
about
> 19th month was so I could surprise you by adding the girls to the
> calander. Sneak you stole my surprise. Great minds truly do think
a
> like. From one great mind to another. Patricia  Hey I put my other
> kids on too.

Hi, Alpha,
Nice to hear from you!  My daughter, age 14 months, has been very
sick most of her life.  We didn't put too much thought into her
large size at birth, because my ex and I were both big babies, and
so was my oldest.  But she just kept getting sick, and she was
tested for immune problems, food allergies, cystic fibrosis, you
name it, all to no avail.  And she was very slow to sit up, crawl,
etc... all the things my first daughter did very quickly. Then when
she was 11 months old, she had a seizure.  She ended up in the big
city of Birmingham, AL, at UAB Children's Hospital, where I finally
heard the word Sotos.  Last month we got word that that is
definately her diagnosis.  So when Patricia told us that her
daughter, who we thought had Sotos, may not have Sotos after all, I
couldn't help but remember the heartache of not knowing what was
wrong, since it was so recent for me, and I decided to start this
group to help people who don't know what disorder exactly their
child has to get together and learn more, together.


That's it in a nutshell!  I'm glad your here.  As for what I know,
its basically stuff I search on the net, then copy and paste to this
site so its all in one convenient location.  Still working on it
though.

Sarah

--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "over growth"
<overgrowthdisorders@h...> wrote:
>

Sarah the reason I had asked for birthdates and questioned you about
19th month was so I could surprise you by adding the girls to the
calander. Sneak you stole my surprise. Great minds truly do think a
like. From one great mind to another. Patricia  Hey I put my other
kids on too.

Hi Alpha this is Patricia not Sarah. No you are not the one but
either way glad to have you. I personally had checked the member
listing and say the undiagnosed overgrowth and thought it was a
mistake or something glad to know there is actually a person. I
hadn't said any thing to Sarah but I thought there was only 3 of us
left glad to know there is actually four of us. Would you be
comfortable answering some of the questions we have in the data base?
You wouldn't have to answer like name and such but diagnoses and how
many siblings would still keep a low profile and give us a little
info. Also there is a poll going about health issues. That would be
nice if you felt comfortable answering that. Although Sarahs daughter
has a diagnoses Sarah is curious about all the different syndromes. I
on the other hand have a daughter Candra who had been diagnosed as
Sotos at the age of three then was changed to undiagnosed about two
weeks ago (she's 17 now) so I am looking for info to see who is
simular to my daughter, although when you look at these syndromes
they are all simular to my daughter LOL  Patricia--- In
UndiagnosedOvergrowthSyndromes@yahoogroups.com, "over growth"
<overgrowthdisorders@h...> wrote:
>

I added a new table to the database section, if anyone is interested
in comparing Karyotypes, please see it.
Thanks,
Sarah

I added a new table to the data base wanted a little more info for
the kids  Patricia

This does sound a lot like CANDRA and has actually been diagnosed
with this from the age of 5 until 9 who knows after Christmas will
start again.  Patricia

--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "beckboo296"
<beckboo296@h...> wrote:
>  BRRS
>         Bannayan-Zonana syndrome (BZS)
>         Riley-Smith syndrome
>         Ruvalcaba-Myhre-Smith syndrome (RMSS)
>         Macrocephaly, multiple lipomas, and hemangiomata
>         Macrocephaly, pseudopapilledema, and multiple hemangiomata
>
>
>
>           Bannayan-Riley-Ruvalcaba syndrome is a rare inherited
> disorder characterized by excessive growth before and after birth;
> an abnormally large head (macrocephaly) that is often long and
> narrow (scaphocephaly); normal intelligence or mild mental
> retardation; and/or benign tumor-like growths (hamartomas) that, in
> most cases, occur below the surface of the skin (subcutaneously).
> The symptoms of this disorder vary greatly from case to case.
>            In most cases, infants with Bannayan-Riley-Ruvalcaba
> syndrome exhibit increased birth weight and length. As affected
> infants age, the growth rate slows and adults with this disorder
> often attain a height that is within the normal range.
>
>            Additional findings associated with Bannayan-Riley-
> Ruvalcaba syndrome may include eye (ocular) abnormalities such as
> crossed eyes (strabismus), widely spaced eyes (ocular
> hypertelorism), deviation of one eye away from the other
> (exotropia), and/or abnormal elevation of the optic disc so that it
> appears swollen (pseudopapilledema).
>
>            In addition, affected infants may also have diminished
> muscle tone (hypotonia); excessive drooling; delayed speech
> development; and/or a significant delay in the attainment of
> developmental milestones such as the ability to sit, stand, walk,
> etc. In some cases, multiple growths (hamartomatous polyps) may
> develop within the intestines (intestinal polyposis) and, in rare
> cases, the back wall of the throat (pharynx) and/or tonsils.
>
>            Additional abnormalities associated with this disorder
> may include abnormal skin coloration (pigmentation) such as areas
of
> skin that may appear "marbled" (cutis marmorata) and/or the
> development of freckle-like spots (pigmented macules) on the penis
> in males or the vulva in females. In some cases, affected
> individuals may also have skeletal abnormalities and/or
> abnormalities affecting the muscles (myopathy). Bannayan-Riley-
> Ruvalcaba syndrome is inherited as an autosomal dominant genetic
> trait.
>
>            Bannayan-Riley-Ruvalcaba is the name used to denote the
> combination of three conditions formerly recognized as separate
> disorders. These disorders are Bannayan-Zonana syndrome, Riley-
Smith
> syndrome, and Ruvalcaba-Myhre-Smith syndrome.

Don't forget to post photos in the photo section.  I have started
several different folders for different syndromes.  If yours isn't
there, you may start a new one.  I hope this will help to get
possible diagnoses from people who have seen these syndromes
before.  Maybe we can even get a doc to join our list... still
working on that one.
Sarah