My son is 5yrs and sleeps in an enclosed bed. I was wondering if
anyone had any suggestions for sleeping will travelling with your
angel. Until know we have used a portable playyard for him, but he has
outgrown it. He will not sleep unless he is in an enclosed bed so we
need to come up with something for when we travel or when he is in
respite.

Could you use a type of childs tents over the bed

Melissa
   ----- Original Message -----
   From: wanda coletta
   To: familiesofangelmansyndrome@yahoogroups.com
   Sent: Wednesday, November 07, 2007 6:39 PM
   Subject: [Families of Angelman Syndrome] Sleeping will travelling


   My son is 5yrs and sleeps in an enclosed bed. I was wondering if
   anyone had any suggestions for sleeping will travelling with your
   angel. Until know we have used a portable playyard for him, but he has
   outgrown it. He will not sleep unless he is in an enclosed bed so we
   need to come up with something for when we travel or when he is in
   respite.





[Non-text portions of this message have been removed]

Wanda,
   That is a concern for all parents who have angels and use an enclosed bed,
which we also use. I have found that using his sleep aid, clonidine is usually
not enough and have gotten a prescription for ambien. we only have to use 5mg,
and it does the trick. He generally sleeps all night long after taking the
ambien.  I don't know if it would be acceptable for a child as young as yours,
but you could ask your pediatrician.
   Best of luck,
   Jean

wanda coletta <wandacoletta@...> wrote:
           My son is 5yrs and sleeps in an enclosed bed. I was wondering if
anyone had any suggestions for sleeping will travelling with your
angel. Until know we have used a portable playyard for him, but he has
outgrown it. He will not sleep unless he is in an enclosed bed so we
need to come up with something for when we travel or when he is in
respite.





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[Non-text portions of this message have been removed]

wanda,
   Hello, my angel is now 7yrs he takes an all natural sleep aide called
melatonin he has takin it since he was 4 he started out taking just the regular
3 mg untill about 6months ago he now takes the same 3mg only half the tablet
meltonin but he now is also on 3mg time released which helps him stay asleep he
usually gets it around 8 asleep by 8:30 and doesnt wake up in the middle of the
night  he gets up in the morning around 7 7:30  which before with just the
regular he would get up about 4 we have be on two vactions this past summer and
had no problem with him sleeping but he doesnt have an enclosed bed at home well
hope this helps  any questions just email me- Sarah

momanddad Warnock <momanddad28@...> wrote:
           Wanda,
That is a concern for all parents who have angels and use an enclosed bed, which
we also use. I have found that using his sleep aid, clonidine is usually not
enough and have gotten a prescription for ambien. we only have to use 5mg, and
it does the trick. He generally sleeps all night long after taking the ambien. I
don't know if it would be acceptable for a child as young as yours, but you
could ask your pediatrician.
Best of luck,
Jean

wanda coletta <wandacoletta@...> wrote:
My son is 5yrs and sleeps in an enclosed bed. I was wondering if
anyone had any suggestions for sleeping will travelling with your
angel. Until know we have used a portable playyard for him, but he has
outgrown it. He will not sleep unless he is in an enclosed bed so we
need to come up with something for when we travel or when he is in
respite.

__________________________________________________
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Tired of spam? Yahoo! Mail has the best spam protection around
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[Non-text portions of this message have been removed]





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You have received a NEW friend request! Check this request here:
http://matchacnfriends.googlepages.com/myfriend.htm

Hi I would like some advise on trying to pottytrain my son.
If you have a child with Angelman and that is pottytrained please give
me some ideas.

I created this cool friends network and added you to my friends network. Hit-up
now:
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I just wanted to say that I hope everyone had a nice Thanksgiving.Stay
warm and God Bless!
Jennifer

I created this cool friends network and added you to my friends network. Hit-up
now:
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Indeed,I thank God for letting me meet you!!!!
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Here is my intro: I have a son that is 5 years old he is the happiest
kid I have met before I was introduced to Angelman Syndrome,I never
really thought that anything was out of sync. He have had him tested
for Angelman Syndrome and everything came out normal, but there is
that chance that its not really all right. He is very active.He is
developmental delayed has a great memory does not forget that is for
sure..I had one Doctor kept saying that he was a angelman baby but all
the test did not show any deletion or anything everything was/is
normal in the back of my head I am thing Cerbal Palsey.But the Doctor
that delivered him said everything was fine.I remembered that they
gave me a shot of stadol to help with the pain. If it was not 2:12 am
I would have be fine with the whole natural delivery I did it
before..It don't makeif that is what he has or not he.

I'm putting together my social calendar today.Could you please click on the link
below and complete your data for me?
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now:
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Hi,
  Im am new to this group. My grandson is 3. He has recently been
tested for AS. We do not have results as of yet. He is a very happy
little boy. He doesn't talk yet, but makes his needs known in other
ways. He has a habit of biting. He bites any chance he gets. I am
aware that he is not doing this to hurt anyone and doesn't even
realize he is causing pain as he explays great delight when he bites
and the person he bites yells out :). Does anyone else have this
issue? If so, are there any ideas how to discourage him from biting?
He has caused injury at times. Our family is used to it and knows how
to avoid it, but he will be starting school soon and we hope to learn
ideas so as another child isn't hurt.

Thanks
Lucy

Hi there,  My son was recently tested for Angelman Syndrome, but we
haven't gotten the results yet.  My son is 6 years old and has been
tested for just about everything under the sun and everything has come
back negative.  So they finally gave him the label of Cerebral Palsy.
I'm sure he has this syndrome as he has 11 of the 17 characteristics of
it.  Does anyone elses child not walk?  My son has no speech, just
makes some word approximations/sounds.  He does a few signs and we're
trying to get him to use a communication device.  You can go to my
son's website to read more about him.

www.angelfire.com/journal2/chases_world/

I'd love to hear your opinions, if you think he may have this syndrome.

Thank you,
Tina

Hi Tina my son that is 5years old has all  if not most of the characteristics of
angelman syndrome too but everything also came up negative, they labeled him as
generalized epilepsy with developmental delay, no speech... they have a word for
it but oh well.. He has low muscle tone and he started walking when he was
almost 3year old its not steady and he can not walk long distances.. I think
that he has some type of cerebral palsy but the ped  and neuro is not saying I'm
sure for legal things but I told the ped if that is what he has then so be it..
I am looking for answers not to sue anyone( the ped is the one that delivered
him.) I am glad that he is here and yes its different than a normal child.. I
have one of those and today was the first day back to school I am more excited
than he was:) My son also does some signs but usually have to guess what he
wants or empty out the cupboard so he can pick and hope that its the right one:)
Does your son have Pt or OT?

Tina <jadesmom85251@...> wrote:                               Hi there, 
My son was recently tested for Angelman Syndrome, but we
  haven't gotten the results yet.  My son is 6 years old and has been
  tested for just about everything under the sun and everything has come
  back negative.  So they finally gave him the label of Cerebral Palsy.
  I'm sure he has this syndrome as he has 11 of the 17 characteristics of
  it.  Does anyone elses child not walk?  My son has no speech, just
  makes some word approximations/sounds.  He does a few signs and we're
  trying to get him to use a communication device.  You can go to my
  son's website to read more about him.

  www.angelfire.com/journal2/chases_world/

  I'd love to hear your opinions, if you think he may have this syndrome.

  Thank you,
  Tina






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My son was tested for Angelman's Syndrome recently, and the test came
back negative. He has every single component of AS and I have been told
by several physical therapists that he has the look of an AS child. My
son is almost 2 1/2.Is it possible to get a false negative? Should I re-
test? Any advice...

Table: Genetic Classes of Angelman Syndrome
               Large typical 15q11.2-13 deletion
  ~70
Hypopigmentation is common
UBE3A mutation
  5-7
Possibility of normal carrier mother
Paternal uniparental disomy
  2-3
Inheritance of both 15s from father
Imprinting defect
  3-5
Some have DNA deletion in IC, most do not
Other chromosome
   1
Unusual chromosome rearrangements leading to 15q11.2-13 deletion
Unknown
  15
All diagnostic tests negative (FISH, DNA methylation, UBE3A mutation analysis)

I found this on angelman.org and I hope that it answers your question..I was
told by a genetic Dr. that its about 11% of children that have angelman have a
negative result I guess that your son and my son are in that 11% .. heather
javajunkie001 <javajunkie001@...> wrote:                               My
son was tested for Angelman's Syndrome recently, and the test came
  back negative. He has every single component of AS and I have been told
  by several physical therapists that he has the look of an AS child. My
  son is almost 2 1/2.Is it possible to get a false negative? Should I re-
  test? Any advice...






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[Non-text portions of this message have been removed]

I wanted to take a moment to respomg to your recent post.My name is Pam, I have
4 daughters with the youngest, Riley, having angelman syndrome. In the years I
have become aquainted with angelman I have found the spectrum to be very
broad.Some children walk others don't some say a few words others don't I will
say one thing that stood out to me as not being a trait of angelman would be the
excessive sleep.I am licky to get riley to sleep through the night and in the
research i have done have found that most children with this syndrome just don't
seem to need sleep.

   The fact that your son can do some signing is amazing to me I wish we could
get riley to pay attention long enough to learn something like that. At this
time she tells us what she wants by going to the thing she wants or bringing it
to us. Such as when she wants a drink she will continually give you her cup
until you fill it there is no wait a minute if you want to wait she isnt having
it.Same with being hungry she will give her plate if it is within reach or she
will sit at the table and yell.

   Riley is a ball of fire she never stops never sits still she began to walk at
4 and a half and life hasnt been the same since then lol.My day consists of
cleaning mess after mess she is so mischievious very much like a two year old
except with 10 times the energy taller stronger and it has lasted two years now.
I keep hoping that she wont be a perpetual 2 year old lol i think I would age
quickly if this lasted too much longer lol.

   Seizures started at 18 months became severe at age 2 she doesnt talk but does
now make some sounds such as mamamamamama over and over that started at 5 and a
half.She was also very sick as a young baby the difference with her was they
never knew what was wrong just always admitted her into the hospital alot of it
was high fevers.She was very delayed she sat somewhat on her own at 18 months
pulled to stand at 2and a half and began cruising. If there are any other things
you would like to know I would be happy to talk to you I do have yahoo messenger
and there is another group this one was filled with constant spam so every one
pretty much abandoned it and we started a new one.Feel free to message me or
email me I will help you however I can I know how it is to not know for sure
exactly what is wrong with your child although riley was diagnosed at 18 months
sometimes i still get confused as to what the right choices are. Luckily the
other three broke me in before Riley came
  along she is 6 and a half now      and the word terrorist has a new meaning now
lol...             Hope to hear from you soon Pam



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Hello, my son is now 7 he was diagnosed when he was 5 he went through every test
possible for Angelman and every test came back negative  but his doctor did give
him a clinical diagnosis of Angelman Syndrome because he fit all but i think two
of the characteristics . i would talk to my doctor and see if he/she would give
you a clinical diagnosis before i had anymore tests done. hope this helps? any
other questions feel free to email me.
   -Sarah

javajunkie001 <javajunkie001@...> wrote:
           My son was tested for Angelman's Syndrome recently, and the test came
back negative. He has every single component of AS and I have been told
by several physical therapists that he has the look of an AS child. My
son is almost 2 1/2.Is it possible to get a false negative? Should I re-
test? Any advice...






---------------------------------
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[Non-text portions of this message have been removed]

Hi to you all.
I joined this group last June but have not posted anything. I
receive all your posts daily and you have helped me a great deal
with questions I had that my doctors could not answer.
I live in South Wales in the UK. Dylan was diagnosed last June when
he was 11 months old. I read about Angelman Syndrome in a magazine
and it sounded so much like Dylan I looked it up on the internet. It
was like reading just about Dylan so I asked the docs to test for
it.
First they did an EEG. This came back as hypsarrhythmic and I was
told he didn't have AS but infantile spasms. He was put on a very
high dose of Prednisolone steroids. Within 2 months of this he was
diagnosed with AS. It was a relief to know what it was although
heartbreaking at the same time.
Dylan was bottle fed from birth but I started him on solids at 5
months of age. He didn't take to them very well. When he started the
steroid treatment he ate like a horse. That was 1 good thing about
them. Now he eats anything and everything. Once he started eating
solids properly he couldn't go back to the bottle at all. It was as
if he'd forgotten to suck and he's just hold the teat in his mouth.
He also had a reflux that was very bad. We think he has a dairy
intolerance as this makes the reflux worse. He doesn't drink milk at
all now and is much better. 2 months ago the doctor gave me losec
mups tablets for Dylans reflux as he was being sick approx 50 times
a day. These tablets are for reflux and peptic ulcers. They are
excellent!! Dylan is hardly sick at all now.
He is developmentally delayed. He's 20 months now and still can't
sit up. He's just started using a standing frame. I think the main
problem is he can't sit still long enough to sit up. I'm hoping he
will this year sometime. He's just started speech & language therapy
and they're working on basic signing with him and he's finding it
all very funny!!
He hasn't had a big seizure yet. He's on Epilim (sodium valproate)
twice a day. He has lots of shakes and absences but the doctors say
this is to do with the hypsarrhythmia not Epilepsy seizures. I don't
know whether I believe them but i'll go with it for the moment!!
There are only 3 children around us that have AS and to be honest
the doctors know absolutely zero about it. That's why I'm so glad I
found this group. Reading all your posts has had me laughing one
minute and crying the next.
All in all I don't get so many bad days now. Dylan really enjoyed
Xmas which surprised me as I didn't think he'd show any interest.
He's such a lovely child and I wouldn't change or swop him for the
world. He's such good company (except when he's awake all night :))
and a pleasure to be with.

Donna (Mummy to Dylan 20mths Del+)

Donna,

Welcome to the group. My son is Kean (pronounced Key-an) he is 10 yrs old. He
was diagnosed when he was 20 months. He also had Infantile spasms that went
undetected until he first big seizure at 17 months. When I described his past
odd behavior to the Neurologist he said that he must have been having IS. Kean
has twitches and tremors all the time awake and sleeping.

He could sit up briefly starting at 8 months if we put him in that position
otherwise he didn't make himself sit up until he was 2 1/2 yrs old. Kean does
not talk and really doesn't use much in the way of communication, he's not
interested I believe.

He is a good eater like you described about Dylan. I can't remember if he was a
great eater when he was Dylan's age but he has gotten so much better over the
years.

Please share more about Dylan. Is he crawling? scooting?  Does he drink from a
sippy cup?


Karla & Kean 10 AS Del+
Iowa



----- Original Message ----
From: donna789077 <xxdodriscollxx@...>
To: familiesofangelmansyndrome@yahoogroups.com
Sent: Saturday, January 5, 2008 6:50:54 AM
Subject: [Families of Angelman Syndrome] My Son Dylan

Hi to you all.
I joined this group last June but have not posted anything. I
receive all your posts daily and you have helped me a great deal
with questions I had that my doctors could not answer.
I live in South Wales in the UK. Dylan was diagnosed last June when
he was 11 months old. I read about Angelman Syndrome in a magazine
and it sounded so much like Dylan I looked it up on the internet. It
was like reading just about Dylan so I asked the docs to test for
it.
First they did an EEG. This came back as hypsarrhythmic and I was
told he didn't have AS but infantile spasms. He was put on a very
high dose of Prednisolone steroids. Within 2 months of this he was
diagnosed with AS. It was a relief to know what it was although
heartbreaking at the same time.
Dylan was bottle fed from birth but I started him on solids at 5
months of age. He didn't take to them very well. When he started the
steroid treatment he ate like a horse. That was 1 good thing about
them. Now he eats anything and everything. Once he started eating
solids properly he couldn't go back to the bottle at all. It was as
if he'd forgotten to suck and he's just hold the teat in his mouth.
He also had a reflux that was very bad. We think he has a dairy
intolerance as this makes the reflux worse. He doesn't drink milk at
all now and is much better. 2 months ago the doctor gave me losec
mups tablets for Dylans reflux as he was being sick approx 50 times
a day. These tablets are for reflux and peptic ulcers. They are
excellent!! Dylan is hardly sick at all now.
He is developmentally delayed. He's 20 months now and still can't
sit up. He's just started using a standing frame. I think the main
problem is he can't sit still long enough to sit up. I'm hoping he
will this year sometime. He's just started speech & language therapy
and they're working on basic signing with him and he's finding it
all very funny!!
He hasn't had a big seizure yet. He's on Epilim (sodium valproate)
twice a day. He has lots of shakes and absences but the doctors say
this is to do with the hypsarrhythmia not Epilepsy seizures. I don't
know whether I believe them but i'll go with it for the moment!!
There are only 3 children around us that have AS and to be honest
the doctors know absolutely zero about it. That's why I'm so glad I
found this group. Reading all your posts has had me laughing one
minute and crying the next.
All in all I don't get so many bad days now. Dylan really enjoyed
Xmas which surprised me as I didn't think he'd show any interest.
He's such a lovely child and I wouldn't change or swop him for the
world. He's such good company (except when he's awake all night :))
and a pleasure to be with.

Donna (Mummy to Dylan 20mths Del+)





      
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[Non-text portions of this message have been removed]

HI Donna, I had to but my son on a special formula and buy a nipple guard so I
could breast feed him. He could not latch on. it was so frustrating on him and
me.but he is a healthy 5 year old boy that has been tested for everything under
the son and nothing has came back with any answers. I have read the Angelman
website and still it like reading about him,not sleeping is not in his favor but
after all this years I have become to learn to sleep when he is or I am not
going to sleep at all!!!! When he does sleep in in patterns he will sleep for 4
hour get up play and then go back to sleep.for the next 4 hours but sometimes
that is not the case he is up for the day and I am ready to go to sleep... I am
with you even though its been a long journey I would not trade him for the
world!! maybe a break once in a while but nothing perminate.. nice talking to
you :) heather

donna789077 <xxdodriscollxx@...> wrote:                              
Hi to you all.
  I joined this group last June but have not posted anything. I
  receive all your posts daily and you have helped me a great deal
  with questions I had that my doctors could not answer.
  I live in South Wales in the UK. Dylan was diagnosed last June when
  he was 11 months old. I read about Angelman Syndrome in a magazine
  and it sounded so much like Dylan I looked it up on the internet. It
  was like reading just about Dylan so I asked the docs to test for
  it.
  First they did an EEG. This came back as hypsarrhythmic and I was
  told he didn't have AS but infantile spasms. He was put on a very
  high dose of Prednisolone steroids. Within 2 months of this he was
  diagnosed with AS. It was a relief to know what it was although
  heartbreaking at the same time.
  Dylan was bottle fed from birth but I started him on solids at 5
  months of age. He didn't take to them very well. When he started the
  steroid treatment he ate like a horse. That was 1 good thing about
  them. Now he eats anything and everything. Once he started eating
  solids properly he couldn't go back to the bottle at all. It was as
  if he'd forgotten to suck and he's just hold the teat in his mouth.
  He also had a reflux that was very bad. We think he has a dairy
  intolerance as this makes the reflux worse. He doesn't drink milk at
  all now and is much better. 2 months ago the doctor gave me losec
  mups tablets for Dylans reflux as he was being sick approx 50 times
  a day. These tablets are for reflux and peptic ulcers. They are
  excellent!! Dylan is hardly sick at all now.
  He is developmentally delayed. He's 20 months now and still can't
  sit up. He's just started using a standing frame. I think the main
  problem is he can't sit still long enough to sit up. I'm hoping he
  will this year sometime. He's just started speech & language therapy
  and they're working on basic signing with him and he's finding it
  all very funny!!
  He hasn't had a big seizure yet. He's on Epilim (sodium valproate)
  twice a day. He has lots of shakes and absences but the doctors say
  this is to do with the hypsarrhythmia not Epilepsy seizures. I don't
  know whether I believe them but i'll go with it for the moment!!
  There are only 3 children around us that have AS and to be honest
  the doctors know absolutely zero about it. That's why I'm so glad I
  found this group. Reading all your posts has had me laughing one
  minute and crying the next.
  All in all I don't get so many bad days now. Dylan really enjoyed
  Xmas which surprised me as I didn't think he'd show any interest.
  He's such a lovely child and I wouldn't change or swop him for the
  world. He's such good company (except when he's awake all night :))
  and a pleasure to be with.

  Donna (Mummy to Dylan 20mths Del+)






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Hi Karla

   He isn't crawling or scooting or anything yet. He still has very low muscle
tone in his chest which is improving all the time. It's strange because he is
the strongest child I've ever met. Maybe this is part of Angelmans??? If he lies
on his tummy he can't support himself on his arms, he can lift his head and
shoulders though.
   He has physiotherapy but it hasn't helped that his reflux has been so bad.
Everytime they tried to do anything with him he was sick everywhere. The tablets
I mentioned are working now so fingers crossed he'll start to progress this
year.
   As for drinking, he doesn't drink very much at all. He will drink from a sippy
cup that's not valved. But he bites the top as he's drinking and a cup will last
him all day and he probably won't finish it. He goes to a special needs nursery
(which is an amazing place and he loves it) and this is what he uses to drink
from there. I use fruit shoot bottles. I don't know if you have them in America,
you probably do, by Robinsons. They're a bit like unvalved sports cap bottles
and he has juice & flavoured water in these. I find he drinks more from these
approx 200-250ml a day.
   He has a wicked sense of humour and you can see the mischief in his eyes. He
can't crawl but he can wriggle to wherever he wants to go if he wants something
badly enough.
   I took him out of his cot about 4 months ago and into a cot bed with a Tomy
bed rail. He gets on with this very well. He's having a specially made foam
padding that goes around a normal single bed in about 6 or 7 months time and
we're waiting for a special needs pushchair. Hopefully should have that in next
few months as he's getting to big for his stroller. He jumps and bounces so much
in it I'm surprised it hasn't collapsed yet. Dylan loves to bounce!!!!!! I can't
wait until he can stand so I can get him a trampoline.
   He communicates in his own way but I'm hoping that eventually he'll be able to
express himself through pictures.
   What age do most angels start to walk? Do the boys tend to be a bit slower
than the girls. I know that Dylan will probably need a wheelchair for distances
but I'm hoping he'll be able to walk for his own independence. Does Kean walk?
What age was he when he started? Did he crawl first?
   I have signed up for respite care (against my better judgement) but I'll
probably be grateful for it when I get used to the idea. There's a very long
waiting list so it'll be a while yet. I know I need to let go but I find it
really hard. But when I've had a week of no sleep it is tempting lol. Dylan goes
through phases. He'll sleep quite well for 2 or 3 weeks then nothing for a week
or so. Isn't it strange how you just adapt to little or no sleep. I wouldn't
believe I could before I had Dylan, I loved my lie ins :). I think I need to
start feeling like Donna again and not just Dylan's mum!!! We don't have any
babysitters so it is hard.
   I do worry about the seizures,but I got to a point where I was so paranoid
about them that I was panicking everytime he had his twitches and shakes. I now
just think when it happens I'll deal with it. He's on an anti convulsant so
hopefully that will make some difference.
   Anyway thanks for listening to me ramble

   Donna (Mummy to Dylan - 20mths Del+)


Karla Dostal <mom_angelboy@...> wrote:
           Donna,

Welcome to the group. My son is Kean (pronounced Key-an) he is 10 yrs old. He
was diagnosed when he was 20 months. He also had Infantile spasms that went
undetected until he first big seizure at 17 months. When I described his past
odd behavior to the Neurologist he said that he must have been having IS. Kean
has twitches and tremors all the time awake and sleeping.

He could sit up briefly starting at 8 months if we put him in that position
otherwise he didn't make himself sit up until he was 2 1/2 yrs old. Kean does
not talk and really doesn't use much in the way of communication, he's not
interested I believe.

He is a good eater like you described about Dylan. I can't remember if he was a
great eater when he was Dylan's age but he has gotten so much better over the
years.

Please share more about Dylan. Is he crawling? scooting? Does he drink from a
sippy cup?

Karla & Kean 10 AS Del+
Iowa

----- Original Message ----
From: donna789077 <xxdodriscollxx@...>
To: familiesofangelmansyndrome@yahoogroups.com
Sent: Saturday, January 5, 2008 6:50:54 AM
Subject: [Families of Angelman Syndrome] My Son Dylan

Hi to you all.
I joined this group last June but have not posted anything. I
receive all your posts daily and you have helped me a great deal
with questions I had that my doctors could not answer.
I live in South Wales in the UK. Dylan was diagnosed last June when
he was 11 months old. I read about Angelman Syndrome in a magazine
and it sounded so much like Dylan I looked it up on the internet. It
was like reading just about Dylan so I asked the docs to test for
it.
First they did an EEG. This came back as hypsarrhythmic and I was
told he didn't have AS but infantile spasms. He was put on a very
high dose of Prednisolone steroids. Within 2 months of this he was
diagnosed with AS. It was a relief to know what it was although
heartbreaking at the same time.
Dylan was bottle fed from birth but I started him on solids at 5
months of age. He didn't take to them very well. When he started the
steroid treatment he ate like a horse. That was 1 good thing about
them. Now he eats anything and everything. Once he started eating
solids properly he couldn't go back to the bottle at all. It was as
if he'd forgotten to suck and he's just hold the teat in his mouth.
He also had a reflux that was very bad. We think he has a dairy
intolerance as this makes the reflux worse. He doesn't drink milk at
all now and is much better. 2 months ago the doctor gave me losec
mups tablets for Dylans reflux as he was being sick approx 50 times
a day. These tablets are for reflux and peptic ulcers. They are
excellent!! Dylan is hardly sick at all now.
He is developmentally delayed. He's 20 months now and still can't
sit up. He's just started using a standing frame. I think the main
problem is he can't sit still long enough to sit up. I'm hoping he
will this year sometime. He's just started speech & language therapy
and they're working on basic signing with him and he's finding it
all very funny!!
He hasn't had a big seizure yet. He's on Epilim (sodium valproate)
twice a day. He has lots of shakes and absences but the doctors say
this is to do with the hypsarrhythmia not Epilepsy seizures. I don't
know whether I believe them but i'll go with it for the moment!!
There are only 3 children around us that have AS and to be honest
the doctors know absolutely zero about it. That's why I'm so glad I
found this group. Reading all your posts has had me laughing one
minute and crying the next.
All in all I don't get so many bad days now. Dylan really enjoyed
Xmas which surprised me as I didn't think he'd show any interest.
He's such a lovely child and I wouldn't change or swop him for the
world. He's such good company (except when he's awake all night :))
and a pleasure to be with.

Donna (Mummy to Dylan 20mths Del+)

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Hi Donna,
My son walked at approximately 3 yeas old, but we did PT 2x a week for 2 years
for walking...
his reflux got so much better and virtually was gone when he got mobile.

Tami
________________________________
> To: familiesofangelmansyndrome@yahoogroups.com
> From: xxdodriscollxx@...
> Date: Sat, 5 Jan 2008 21:48:15 +0000
> Subject: Re: [Families of Angelman Syndrome] My Son Dylan
>
>
> Hi Karla
>
> He isn't crawling or scooting or anything yet. He still has very low muscle
tone in his chest which is improving all the time. It's strange because he is
the strongest child I've ever met. Maybe this is part of Angelmans??? If he lies
on his tummy he can't support himself on his arms, he can lift his head and
shoulders though.
> He has physiotherapy but it hasn't helped that his reflux has been so bad.
Everytime they tried to do anything with him he was sick everywhere. The tablets
I mentioned are working now so fingers crossed he'll start to progress this
year.
> As for drinking, he doesn't drink very much at all. He will drink from a sippy
cup that's not valved. But he bites the top as he's drinking and a cup will last
him all day and he probably won't finish it. He goes to a special needs nursery
(which is an amazing place and he loves it) and this is what he uses to drink
from there. I use fruit shoot bottles. I don't know if you have them in America,
you probably do, by Robinsons. They're a bit like unvalved sports cap bottles
and he has juice & flavoured water in these. I find he drinks more from these
approx 200-250ml a day.
> He has a wicked sense of humour and you can see the mischief in his eyes. He
can't crawl but he can wriggle to wherever he wants to go if he wants something
badly enough.
> I took him out of his cot about 4 months ago and into a cot bed with a Tomy
bed rail. He gets on with this very well. He's having a specially made foam
padding that goes around a normal single bed in about 6 or 7 months time and
we're waiting for a special needs pushchair. Hopefully should have that in next
few months as he's getting to big for his stroller. He jumps and bounces so much
in it I'm surprised it hasn't collapsed yet. Dylan loves to bounce!!!!!! I can't
wait until he can stand so I can get him a trampoline.
> He communicates in his own way but I'm hoping that eventually he'll be able to
express himself through pictures.
> What age do most angels start to walk? Do the boys tend to be a bit slower
than the girls. I know that Dylan will probably need a wheelchair for distances
but I'm hoping he'll be able to walk for his own independence. Does Kean walk?
What age was he when he started? Did he crawl first?
> I have signed up for respite care (against my better judgement) but I'll
probably be grateful for it when I get used to the idea. There's a very long
waiting list so it'll be a while yet. I know I need to let go but I find it
really hard. But when I've had a week of no sleep it is tempting lol. Dylan goes
through phases. He'll sleep quite well for 2 or 3 weeks then nothing for a week
or so. Isn't it strange how you just adapt to little or no sleep. I wouldn't
believe I could before I had Dylan, I loved my lie ins :). I think I need to
start feeling like Donna again and not just Dylan's mum!!! We don't have any
babysitters so it is hard.
> I do worry about the seizures,but I got to a point where I was so paranoid
about them that I was panicking everytime he had his twitches and shakes. I now
just think when it happens I'll deal with it. He's on an anti convulsant so
hopefully that will make some difference.
> Anyway thanks for listening to me ramble
>
> Donna (Mummy to Dylan - 20mths Del+)
>
>
> Karla Dostal
_________________________________________________________________
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Donna,

I thought I would just share Kean's background with you. I thought that would
help to know us a little better.

We actually knew something wasn't quite right at 2 weeks of age.  He had
Aspiration Pneumonia and was just fussier and sicker then he should have been.
He was in the NICU for 2 weeks on oxygen and came home with oxygen and had it
for a month.  Kean started PT at 4 mos of age.  He could not lay flat on his
back. At 7 mos he could barely lift his head of the floor.  He had what we
thought could possibly be seizures starting at about 6 mos of age. The Dr's and
PT ruled it his body not knowing where he is in space.  Sounded logical.  At 17
months he had his first positive seizure.  He then had an EEG and it showed his
brain being in Status. That means he is having seizures in his brain every
moment of his life if we see them or not.  He had been diagnosed with Cerebral
Palsy at 1 yr of age.  My husband & I diagnosed him with AS at 20 mos, that was
after a family in a close town told their story in the paper about their son
with AS.  Kean fit everything about
  their son.  We took that information and told the Dr we wanted him tested for
AS and within 5 weeks we were right. AS-Deletion Positive.  He truly fits most
if not all the characteristics of AS.

Physical Abilities:
Kean was able to sit up if placed at 8 months. He would however fall over if he
looked up.
I believe he started rolling over both directions at 10 months.  He held his own
bottle for the first time at 14 months. He didn't commando crawl until he was 17
months after his first set of visible seizures.  He didn't learn how to sit up
on his own until he was 2 1/2 years old. That was after a week of seizures.  He
started scooting on his bottom when he was 3 yrs old.  He started in a Gait
Trainer when he was 3 yrs old. He tried pulling up to the couch when he was 4
yrs old.  He could 4 point crawl when he was 5 yrs old.  Kean moved into a Kaye
Walker when he was 5 1/2 yrs old.  He still uses it now at 10 yrs old.  He will
also walk with someone holding onto one hand. He cannot get off the floor to a
standing postition by himself.

Kean is an 10 yr old dark blonde hair, gray eyed boy.  He is very happy. He is
able to walk with the aide of a walker and with lots of hands on assistance. 
His main mode of transportation is to scoot across the floor on his bottom.  He
will on occasion 4 point crawl.  He uses a pacifier and drinks from a sippy cup.
He has only been using the sippy cup for a year.

He has many different kinds of seizures but the quantity is small.  He is vocal
but non-verbal.  He understands the concept of the Big Mac.  He is starting to
understand PECS (picture exchange communication system).  He really enjoys
looking at pictures of people.  He does mouth toys, but less frequently then in
the past.  He does not have a fascination with water. He does enjoy putting his
hand under running water as long as it is warm.  The bath tub isn't anymore
thrilling for him then it is for my typical son.  Kean is extremely laid back. 
I am able to leave him alone in our living room and go down in our basement and
when I come back up he is still in the same spot.  We do not have any gates up. 
He loves to play with stacking toys and buckets.  He loves to put toys in a
bucket ( i.e. shoes,) and then take them out again.  He loves watching DVD's on
the TV.  He does not use hand gestures or pointing.  He does scoot to the person
he wants and fusses
  until they pick him up.  He does enjoy playing with other children and
especially his big brother Jace.  He is able to sit in a classroom with his
typical peers and be appropriate at school.  He does have his aide sit beside
him. He very seldom pulls hair or bites, if it happens he doesn't do it in a
mean way. He does not wrestle but you will be crawled over if you lay on the
floor.  He does not flap his arms.  He does walk with one arm flexed at the
elbows when he is walking with someone holding his hand.  When he is in his
wheelchair or in the car seat his arms are flexed at the elbows as well.  He
will put them down sometimes but more often then not they are flexed.
He does have tremors daily.

Medications he is on are:
Depakote & Topamax(for seizures)
Singulair (For Asthma),
Diazepam (as needed for seizures),
Miralax (For Constipation)
He has been hospitalized 20 times mainly for dehydration and seizures.
He weighs 53lbs.  He is 4 ft tall. He is the average size of a 7 yr old.

Kean used to take Phenobarbital.  It made him extremely grouchy.
He is taking Depakote 250mg AM and 250mg PM. He is also taking Topamax 50mg Am
and 100mg PM.

Kean also has an Enclosed bed.  His is called a Sleep Secure Bed  it was made
locally.  It is a Twin Size Captains Bed with padded poles and a mesh enclosure
that zips him in. We also have a top cover whenever he is able to start
climbing.  His sleeps habits have improved since he got the bed.  He was almost
4 when we finally received it.  He usually goes to bed around 10:00-10:30 and
sleeps until about 6:00am.

About school:

Kean attended a full inclusion preschool for 2 years.  He had a one on one aide
(me his mom) while he was there.  I was hired by the school district to be his
aide.  When he graduated from preschool and went to Kindergarten he received a
new aide.  She has been with him for 6 yrs.  He did 2 years of Kindergarten, 1
yr of 1st, 2nd, 3rd and he is now in the 4th grade.  He attends our local public
school.  He is considered Partially Included:  that means he spends time with
his Regular Ed peers in their classroom and specials and he also spends time in
his Special Needs classroom working on his goals.  He has many friends and is
doing great in this environment.  He receives PT and Speech at school.  The do
not treat him any differently.  They talk to him as if they are expecting an
answer and don't seem to notice or care that they are not getting one.

I still work as a special ed assistant this is my 8 yr. I work at the same
Elementary school that Kean attends.
I have worked with many children who are a lot like Kean in their skill level. 
They have all been non-verbal and non-mobile or they need some assistance to be
mobile. The child I work with has a Traumatic Brain Injury, he was shaken when
he was 9 months old. He is doing fantastic and is way above his typical peers in
Kindergarten, I have been with him for 4 yrs.

Sorry it's so long.


Karla & Kean 10 AS Del+
Iowa



----- Original Message ----
From: Donna ODriscoll <xxdodriscollxx@...>
To: familiesofangelmansyndrome@yahoogroups.com
Sent: Saturday, January 5, 2008 3:48:15 PM
Subject: Re: [Families of Angelman Syndrome] My Son Dylan

Hi Karla

He isn't crawling or scooting or anything yet. He still has very low muscle tone
in his chest which is improving all the time. It's strange because he is the
strongest child I've ever met. Maybe this is part of Angelmans??? If he lies on
his tummy he can't support himself on his arms, he can lift his head and
shoulders though.
He has physiotherapy but it hasn't helped that his reflux has been so bad.
Everytime they tried to do anything with him he was sick everywhere. The tablets
I mentioned are working now so fingers crossed he'll start to progress this
year.
As for drinking, he doesn't drink very much at all. He will drink from a sippy
cup that's not valved. But he bites the top as he's drinking and a cup will last
him all day and he probably won't finish it. He goes to a special needs nursery
(which is an amazing place and he loves it) and this is what he uses to drink
from there. I use fruit shoot bottles. I don't know if you have them in America,
you probably do, by Robinsons. They're a bit like unvalved sports cap bottles
and he has juice & flavoured water in these. I find he drinks more from these
approx 200-250ml a day.
He has a wicked sense of humour and you can see the mischief in his eyes. He
can't crawl but he can wriggle to wherever he wants to go if he wants something
badly enough.
I took him out of his cot about 4 months ago and into a cot bed with a Tomy bed
rail. He gets on with this very well. He's having a specially made foam padding
that goes around a normal single bed in about 6 or 7 months time and we're
waiting for a special needs pushchair. Hopefully should have that in next few
months as he's getting to big for his stroller. He jumps and bounces so much in
it I'm surprised it hasn't collapsed yet. Dylan loves to bounce!!!!!! I can't
wait until he can stand so I can get him a trampoline.
He communicates in his own way but I'm hoping that eventually he'll be able to
express himself through pictures.
What age do most angels start to walk? Do the boys tend to be a bit slower than
the girls. I know that Dylan will probably need a wheelchair for distances but
I'm hoping he'll be able to walk for his own independence. Does Kean walk? What
age was he when he started? Did he crawl first?
I have signed up for respite care (against my better judgement) but I'll
probably be grateful for it when I get used to the idea. There's a very long
waiting list so it'll be a while yet. I know I need to let go but I find it
really hard. But when I've had a week of no sleep it is tempting lol. Dylan goes
through phases. He'll sleep quite well for 2 or 3 weeks then nothing for a week
or so. Isn't it strange how you just adapt to little or no sleep. I wouldn't
believe I could before I had Dylan, I loved my lie ins :). I think I need to
start feeling like Donna again and not just Dylan's mum!!! We don't have any
babysitters so it is hard.
I do worry about the seizures,but I got to a point where I was so paranoid about
them that I was panicking everytime he had his twitches and shakes. I now just
think when it happens I'll deal with it. He's on an anti convulsant so hopefully
that will make some difference.
Anyway thanks for listening to me ramble

Donna (Mummy to Dylan - 20mths Del+)


Karla Dostal <mom_angelboy@ yahoo.com> wrote:
Donna,

Welcome to the group. My son is Kean (pronounced Key-an) he is 10 yrs old. He
was diagnosed when he was 20 months. He also had Infantile spasms that went
undetected until he first big seizure at 17 months. When I described his past
odd behavior to the Neurologist he said that he must have been having IS. Kean
has twitches and tremors all the time awake and sleeping.

He could sit up briefly starting at 8 months if we put him in that position
otherwise he didn't make himself sit up until he was 2 1/2 yrs old. Kean does
not talk and really doesn't use much in the way of communication, he's not
interested I believe.

He is a good eater like you described about Dylan. I can't remember if he was a
great eater when he was Dylan's age but he has gotten so much better over the
years.

Please share more about Dylan. Is he crawling? scooting? Does he drink from a
sippy cup?

Karla & Kean 10 AS Del+
Iowa

----- Original Message ----
From: donna789077 <xxdodriscollxx@ btinternet. com>
To: familiesofangelmans yndrome@yahoogro ups.com
Sent: Saturday, January 5, 2008 6:50:54 AM
Subject: [Families of Angelman Syndrome] My Son Dylan

Hi to you all.
I joined this group last June but have not posted anything. I
receive all your posts daily and you have helped me a great deal
with questions I had that my doctors could not answer.
I live in South Wales in the UK. Dylan was diagnosed last June when
he was 11 months old. I read about Angelman Syndrome in a magazine
and it sounded so much like Dylan I looked it up on the internet. It
was like reading just about Dylan so I asked the docs to test for
it.
First they did an EEG. This came back as hypsarrhythmic and I was
told he didn't have AS but infantile spasms. He was put on a very
high dose of Prednisolone steroids. Within 2 months of this he was
diagnosed with AS. It was a relief to know what it was although
heartbreaking at the same time.
Dylan was bottle fed from birth but I started him on solids at 5
months of age. He didn't take to them very well. When he started the
steroid treatment he ate like a horse. That was 1 good thing about
them. Now he eats anything and everything. Once he started eating
solids properly he couldn't go back to the bottle at all. It was as
if he'd forgotten to suck and he's just hold the teat in his mouth.
He also had a reflux that was very bad. We think he has a dairy
intolerance as this makes the reflux worse. He doesn't drink milk at
all now and is much better. 2 months ago the doctor gave me losec
mups tablets for Dylans reflux as he was being sick approx 50 times
a day. These tablets are for reflux and peptic ulcers. They are
excellent!! Dylan is hardly sick at all now.
He is developmentally delayed. He's 20 months now and still can't
sit up. He's just started using a standing frame. I think the main
problem is he can't sit still long enough to sit up. I'm hoping he
will this year sometime. He's just started speech & language therapy
and they're working on basic signing with him and he's finding it
all very funny!!
He hasn't had a big seizure yet. He's on Epilim (sodium valproate)
twice a day. He has lots of shakes and absences but the doctors say
this is to do with the hypsarrhythmia not Epilepsy seizures. I don't
know whether I believe them but i'll go with it for the moment!!
There are only 3 children around us that have AS and to be honest
the doctors know absolutely zero about it. That's why I'm so glad I
found this group. Reading all your posts has had me laughing one
minute and crying the next.
All in all I don't get so many bad days now. Dylan really enjoyed
Xmas which surprised me as I didn't think he'd show any interest.
He's such a lovely child and I wouldn't change or swop him for the
world. He's such good company (except when he's awake all night :))
and a pleasure to be with.

Donna (Mummy to Dylan 20mths Del+)

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HI my name is Chantel
   I live in Tucson, My son is six years old he got
diagnosed with Angelman when he was 12 months his name
is michael we call him Jr. He is a very happy boy he
scoots on his bottum, he is non verbal he does shakes
his head yes or no. sometimes I fell bad when i'm
doing to many things at home like cleaning and so on.
Because he will sit there or play with his one
favorite toy I have bought him so many different toys
so he doesn't look so bored but he just is not
interested of any toys. How does your son keep him
self busy do you have any suggestions.
--- Karla Dostal <mom_angelboy@...> wrote:

> Donna,
>
> I thought I would just share Kean's background with
> you. I thought that would help to know us a little
> better.
>
> We actually knew something wasn't quite right at 2
> weeks of age.  He had Aspiration Pneumonia and was
> just fussier and sicker then he should have been. He
> was in the NICU for 2 weeks on oxygen and came home
> with oxygen and had it for a month.  Kean started PT
> at 4 mos of age.  He could not lay flat on his back.
> At 7 mos he could barely lift his head of the floor.
>  He had what we thought could possibly be seizures
> starting at about 6 mos of age. The Dr's and PT
> ruled it his body not knowing where he is in space.
> Sounded logical.  At 17 months he had his first
> positive seizure.  He then had an EEG and it showed
> his brain being in Status. That means he is having
> seizures in his brain every moment of his life if we
> see them or not.  He had been diagnosed with
> Cerebral Palsy at 1 yr of age.  My husband & I
> diagnosed him with AS at 20 mos, that was after a
> family in a close town told their story in the paper
> about their son with AS.  Kean fit everything about
>  their son.  We took that information and told the
> Dr we wanted him tested for AS and within 5 weeks we
> were right. AS-Deletion Positive.  He truly fits
> most if not all the characteristics of AS.
>
> Physical Abilities:
> Kean was able to sit up if placed at 8 months. He
> would however fall over if he looked up.
> I believe he started rolling over both directions at
> 10 months.  He held his own bottle for the first
> time at 14 months. He didn't commando crawl until he
> was 17 months after his first set of visible
> seizures.  He didn't learn how to sit up on his own
> until he was 2 1/2 years old. That was after a week
> of seizures.  He started scooting on his bottom when
> he was 3 yrs old.  He started in a Gait Trainer when
> he was 3 yrs old. He tried pulling up to the couch
> when he was 4 yrs old.  He could 4 point crawl when
> he was 5 yrs old.  Kean moved into a Kaye Walker
> when he was 5 1/2 yrs old.  He still uses it now at
> 10 yrs old.  He will also walk with someone holding
> onto one hand. He cannot get off the floor to a
> standing postition by himself.
>
> Kean is an 10 yr old dark blonde hair, gray eyed
> boy.  He is very happy. He is able to walk with the
> aide of a walker and with lots of hands on
> assistance.  His main mode of transportation is to
> scoot across the floor on his bottom.  He will on
> occasion 4 point crawl.  He uses a pacifier and
> drinks from a sippy cup. He has only been using the
> sippy cup for a year.
>
> He has many different kinds of seizures but the
> quantity is small.  He is vocal but non-verbal.  He
> understands the concept of the Big Mac.  He is
> starting to understand PECS (picture exchange
> communication system).  He really enjoys looking at
> pictures of people.  He does mouth toys, but less
> frequently then in the past.  He does not have a
> fascination with water. He does enjoy putting his
> hand under running water as long as it is warm.  The
> bath tub isn't anymore thrilling for him then it is
> for my typical son.  Kean is extremely laid back.  I
> am able to leave him alone in our living room and go
> down in our basement and when I come back up he is
> still in the same spot.  We do not have any gates
> up.  He loves to play with stacking toys and
> buckets.  He loves to put toys in a bucket ( i.e.
> shoes,) and then take them out again.  He loves
> watching DVD's on the TV.  He does not use hand
> gestures or pointing.  He does scoot to the person
> he wants and fusses
>  until they pick him up.  He does enjoy playing with
> other children and especially his big brother Jace.
> He is able to sit in a classroom with his typical
> peers and be appropriate at school.  He does have
> his aide sit beside him. He very seldom pulls hair
> or bites, if it happens he doesn't do it in a mean
> way. He does not wrestle but you will be crawled
> over if you lay on the floor.  He does not flap his
> arms.  He does walk with one arm flexed at the
> elbows when he is walking with someone holding his
> hand.  When he is in his wheelchair or in the car
> seat his arms are flexed at the elbows as well.  He
> will put them down sometimes but more often then not
> they are flexed.
> He does have tremors daily.
>
> Medications he is on are:
> Depakote & Topamax(for seizures)
> Singulair (For Asthma),
> Diazepam (as needed for seizures),
> Miralax (For Constipation)
> He has been hospitalized 20 times mainly for
> dehydration and seizures.
> He weighs 53lbs.  He is 4 ft tall. He is the average
> size of a 7 yr old.
>
> Kean used to take Phenobarbital.  It made him
> extremely grouchy.
> He is taking Depakote 250mg AM and 250mg PM. He is
> also taking Topamax 50mg Am and 100mg PM.
>
> Kean also has an Enclosed bed.  His is called a
> Sleep Secure Bed  it was made locally.  It is a Twin
> Size Captains Bed with padded poles and a mesh
> enclosure that zips him in. We also have a top cover
> whenever he is able to start climbing.  His sleeps
> habits have improved since he got the bed.  He was
> almost 4 when we finally received it.  He usually
> goes to bed around 10:00-10:30 and sleeps until
> about 6:00am.
>
> About school:
>
> Kean attended a full inclusion preschool for 2
> years.  He had a one on one aide (me his mom) while
> he was there.  I was hired by the school district to
> be his aide.  When he graduated from preschool and
> went to Kindergarten he received a new aide.  She
> has been with him for 6 yrs.  He did 2 years of
> Kindergarten, 1 yr of 1st, 2nd, 3rd and he is now in
> the 4th grade.  He attends our local public school.
> He is considered Partially Included:  that means he
> spends time with his Regular Ed peers in their
> classroom and specials and he also spends time in
> his Special Needs classroom working on his goals.
> He has many friends and is doing great in this
> environment.  He receives PT and Speech at school.
> The do not treat him any differently.  They talk to
> him as if they are expecting an answer and don't
> seem to notice or care that they are not getting
> one.
>
> I still work as a special ed assistant this is my 8
> yr. I work at the same Elementary school that Kean
> attends.
> I have worked with many children who are a lot like
> Kean in their skill level.  They have all been
> non-verbal and non-mobile or they need some
> assistance to be mobile. The child I work with has a
> Traumatic Brain Injury, he was shaken when he was 9
> months old. He is doing fantastic and is way above
> his typical peers in Kindergarten, I have been with
> him for 4 yrs.
>
> Sorry it's so long.
>
>
> Karla & Kean 10 AS Del+
> Iowa
>
>
>
> ----- Original Message ----
> From: Donna ODriscoll
> <xxdodriscollxx@...>
> To: familiesofangelmansyndrome@yahoogroups.com
> Sent: Saturday, January 5, 2008 3:48:15 PM
> Subject: Re: [Families of Angelman Syndrome] My Son
> Dylan
>
> Hi Karla
>
> He isn't crawling or scooting or anything yet. He
> still has very low muscle tone in his chest which is
> improving all the time. It's strange because he is
> the strongest child I've ever met. Maybe this is
> part of Angelmans??? If he lies on his tummy he
> can't support himself on his arms, he can lift his
> head and shoulders though.
> He has physiotherapy but it hasn't helped that his
> reflux has been so bad. Everytime they tried to do
> anything with him he was sick everywhere. The
> tablets I mentioned are working now so fingers
> crossed he'll start to progress this year.
> As for drinking, he doesn't drink very much at all.
> He will drink from a sippy cup that's not valved.
> But he bites the top as he's drinking and a cup will
> last him all day and he probably won't finish it. He
> goes to a special needs nursery (which is an amazing
> place and he loves it) and this is what he uses to
> drink from there. I use fruit shoot bottles. I don't
> know if you have them in America, you probably do,
> by Robinsons. They're a bit like unvalved sports cap
> bottles and he has juice & flavoured water in these.
> I find he drinks more from these approx 200-250ml a
> day.
> He has a wicked sense of humour and you can see the
> mischief in his eyes. He can't crawl but he can
> wriggle to wherever he wants to go if he wants
> something badly enough.
> I took him out of his cot about 4 months ago and
> into a cot bed with a Tomy bed rail. He gets on with
> this very well. He's having a specially made foam
> padding
=== message truncated ===



      
________________________________________________________________________________\
____
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My son Kean is very laid back and has always been a great player / self
entertainer. He has certain types of toys he likes to play with. He enjoys
velcro fruit and veggies because he loves to pull things apart and put them back
together. He also likes container playing, he has always liked putting things in
and taking them out. He also loves ball ramps. His newest toy is a magnectic toy
it's for ages 3+ the pieces are really big so he cannot swallow them. They are
similar to the Magnetix toys that have been all the craze, I found Kean's set in
the same aisle. Kean also is into Disney movies on DVD, he really likes the
computer animated ones like Finding Nemo, Toys Story 1&2, Meet The Robinsons,
Madagaskar and Ice Age 1&2 just to name a few.

Karla & Kean 10 AS Del+
Iowa



----- Original Message ----
From: Chantel Borquez <c.borquez@...>
To: familiesofangelmansyndrome@yahoogroups.com
Sent: Sunday, January 6, 2008 5:22:15 PM
Subject: Re: [Families of Angelman Syndrome] My Son Dylan

HI my name is Chantel
I live in Tucson, My son is six years old he got
diagnosed with Angelman when he was 12 months his name
is michael we call him Jr. He is a very happy boy he
scoots on his bottum, he is non verbal he does shakes
his head yes or no. sometimes I fell bad when i'm
doing to many things at home like cleaning and so on.
Because he will sit there or play with his one
favorite toy I have bought him so many different toys
so he doesn't look so bored but he just is not
interested of any toys. How does your son keep him
self busy do you have any suggestions.
--- Karla Dostal <mom_angelboy@ yahoo.com> wrote:

> Donna,
>
> I thought I would just share Kean's background with
> you. I thought that would help to know us a little
> better.
>
> We actually knew something wasn't quite right at 2
> weeks of age. He had Aspiration Pneumonia and was
> just fussier and sicker then he should have been. He
> was in the NICU for 2 weeks on oxygen and came home
> with oxygen and had it for a month. Kean started PT
> at 4 mos of age. He could not lay flat on his back.
> At 7 mos he could barely lift his head of the floor.
> He had what we thought could possibly be seizures
> starting at about 6 mos of age. The Dr's and PT
> ruled it his body not knowing where he is in space.
> Sounded logical. At 17 months he had his first
> positive seizure. He then had an EEG and it showed
> his brain being in Status. That means he is having
> seizures in his brain every moment of his life if we
> see them or not. He had been diagnosed with
> Cerebral Palsy at 1 yr of age. My husband & I
> diagnosed him with AS at 20 mos, that was after a
> family in a close town told their story in the paper
> about their son with AS. Kean fit everything about
> their son. We took that information and told the
> Dr we wanted him tested for AS and within 5 weeks we
> were right. AS-Deletion Positive. He truly fits
> most if not all the characteristics of AS.
>
> Physical Abilities:
> Kean was able to sit up if placed at 8 months. He
> would however fall over if he looked up.
> I believe he started rolling over both directions at
> 10 months. He held his own bottle for the first
> time at 14 months. He didn't commando crawl until he
> was 17 months after his first set of visible
> seizures. He didn't learn how to sit up on his own
> until he was 2 1/2 years old. That was after a week
> of seizures. He started scooting on his bottom when
> he was 3 yrs old. He started in a Gait Trainer when
> he was 3 yrs old. He tried pulling up to the couch
> when he was 4 yrs old. He could 4 point crawl when
> he was 5 yrs old. Kean moved into a Kaye Walker
> when he was 5 1/2 yrs old. He still uses it now at
> 10 yrs old. He will also walk with someone holding
> onto one hand. He cannot get off the floor to a
> standing postition by himself.
>
> Kean is an 10 yr old dark blonde hair, gray eyed
> boy. He is very happy. He is able to walk with the
> aide of a walker and with lots of hands on
> assistance. His main mode of transportation is to
> scoot across the floor on his bottom. He will on
> occasion 4 point crawl. He uses a pacifier and
> drinks from a sippy cup. He has only been using the
> sippy cup for a year.
>
> He has many different kinds of seizures but the
> quantity is small. He is vocal but non-verbal. He
> understands the concept of the Big Mac. He is
> starting to understand PECS (picture exchange
> communication system). He really enjoys looking at
> pictures of people. He does mouth toys, but less
> frequently then in the past. He does not have a
> fascination with water. He does enjoy putting his
> hand under running water as long as it is warm. The
> bath tub isn't anymore thrilling for him then it is
> for my typical son. Kean is extremely laid back. I
> am able to leave him alone in our living room and go
> down in our basement and when I come back up he is
> still in the same spot. We do not have any gates
> up. He loves to play with stacking toys and
> buckets. He loves to put toys in a bucket ( i.e.
> shoes,) and then take them out again. He loves
> watching DVD's on the TV. He does not use hand
> gestures or pointing. He does scoot to the person
> he wants and fusses
> until they pick him up. He does enjoy playing with
> other children and especially his big brother Jace.
> He is able to sit in a classroom with his typical
> peers and be appropriate at school. He does have
> his aide sit beside him. He very seldom pulls hair
> or bites, if it happens he doesn't do it in a mean
> way. He does not wrestle but you will be crawled
> over if you lay on the floor. He does not flap his
> arms. He does walk with one arm flexed at the
> elbows when he is walking with someone holding his
> hand. When he is in his wheelchair or in the car
> seat his arms are flexed at the elbows as well. He
> will put them down sometimes but more often then not
> they are flexed.
> He does have tremors daily.
>
> Medications he is on are:
> Depakote & Topamax(for seizures)
> Singulair (For Asthma),
> Diazepam (as needed for seizures),
> Miralax (For Constipation)
> He has been hospitalized 20 times mainly for
> dehydration and seizures.
> He weighs 53lbs. He is 4 ft tall. He is the average
> size of a 7 yr old.
>
> Kean used to take Phenobarbital. It made him
> extremely grouchy.
> He is taking Depakote 250mg AM and 250mg PM. He is
> also taking Topamax 50mg Am and 100mg PM.
>
> Kean also has an Enclosed bed. His is called a
> Sleep Secure Bed it was made locally. It is a Twin
> Size Captains Bed with padded poles and a mesh
> enclosure that zips him in. We also have a top cover
> whenever he is able to start climbing. His sleeps
> habits have improved since he got the bed. He was
> almost 4 when we finally received it. He usually
> goes to bed around 10:00-10:30 and sleeps until
> about 6:00am.
>
> About school:
>
> Kean attended a full inclusion preschool for 2
> years. He had a one on one aide (me his mom) while
> he was there. I was hired by the school district to
> be his aide. When he graduated from preschool and
> went to Kindergarten he received a new aide. She
> has been with him for 6 yrs. He did 2 years of
> Kindergarten, 1 yr of 1st, 2nd, 3rd and he is now in
> the 4th grade. He attends our local public school.
> He is considered Partially Included: that means he
> spends time with his Regular Ed peers in their
> classroom and specials and he also spends time in
> his Special Needs classroom working on his goals.
> He has many friends and is doing great in this
> environment. He receives PT and Speech at school.
> The do not treat him any differently. They talk to
> him as if they are expecting an answer and don't
> seem to notice or care that they are not getting
> one.
>
> I still work as a special ed assistant this is my 8
> yr. I work at the same Elementary school that Kean
> attends.
> I have worked with many children who are a lot like
> Kean in their skill level. They have all been
> non-verbal and non-mobile or they need some
> assistance to be mobile. The child I work with has a
> Traumatic Brain Injury, he was shaken when he was 9
> months old. He is doing fantastic and is way above
> his typical peers in Kindergarten, I have been with
> him for 4 yrs.
>
> Sorry it's so long.
>
>
> Karla & Kean 10 AS Del+
> Iowa
>
>
>
> ----- Original Message ----
> From: Donna ODriscoll
> <xxdodriscollxx@ btinternet. com>
> To: familiesofangelmans yndrome@yahoogro ups.com
> Sent: Saturday, January 5, 2008 3:48:15 PM
> Subject: Re: [Families of Angelman Syndrome] My Son
> Dylan
>
> Hi Karla
>
> He isn't crawling or scooting or anything yet. He
> still has very low muscle tone in his chest which is
> improving all the time. It's strange because he is
> the strongest child I've ever met. Maybe this is
> part of Angelmans??? If he lies on his tummy he
> can't support himself on his arms, he can lift his
> head and shoulders though.
> He has physiotherapy but it hasn't helped that his
> reflux has been so bad. Everytime they tried to do
> anything with him he was sick everywhere. The
> tablets I mentioned are working now so fingers
> crossed he'll start to progress this year.
> As for drinking, he doesn't drink very much at all.
> He will drink from a sippy cup that's not valved.
> But he bites the top as he's drinking and a cup will
> last him all day and he probably won't finish it. He
> goes to a special needs nursery (which is an amazing
> place and he loves it) and this is what he uses to
> drink from there. I use fruit shoot bottles. I don't
> know if you have them in America, you probably do,
> by Robinsons. They're a bit like unvalved sports cap
> bottles and he has juice & flavoured water in these.
> I find he drinks more from these approx 200-250ml a
> day.
> He has a wicked sense of humour and you can see the
> mischief in his eyes. He can't crawl but he can
> wriggle to wherever he wants to go if he wants
> something badly enough.
> I took him out of his cot about 4 months ago and
> into a cot bed with a Tomy bed rail. He gets on with
> this very well. He's having a specially made foam
> padding
=== message truncated ===

____________ _________ _________ _________ _________ _________ _
Looking for last minute shopping deals?
Find them fast with Yahoo! Search. http://tools. search.yahoo. com/newsearch/
category. php?category= shopping





      
________________________________________________________________________________\
____
Looking for last minute shopping deals?
Find them fast with Yahoo! Search. 
http://tools.search.yahoo.com/newsearch/category.php?category=shopping

[Non-text portions of this message have been removed]

It just popped up on a search today , that in 2001 I joined this
group.
My graddaughter at the time was going thru the testing stage .

Wow... as I read back over those earlier post I made.

As it turns out , in 2002 , we did find our DX, Rett Syndrome.

I dont know any other way to put this, so here goes.

Alexis was born on 7/8/99, she lived with me her Nana for most of
her life. she passed away on 7/5/06.

SHE will forever be part of me, forever she will have my heart.

I miss her each and every day.

hugs and forever butterfly kisses from Maine.

Did any of you moms have prenatal ultrasounds? If so how did your
angels look at 10-15wks gestation? My son had a "water-filled-tumor"
called a cystic hygroma that was visible on the back of his neck.
This is the same place they look for chromosome abnormalities,
referred to as the nucal thickness. My son had a very large nucal
thickness and hygroma. It had cleared up by the time he was born.




--- In familiesofangelmansyndrome@yahoogroups.com, Karla Dostal
<mom_angelboy@...> wrote:
>
> My son Kean is very laid back and has always been a great player /
self entertainer. He has certain types of toys he likes to play with.
He enjoys velcro fruit and veggies because he loves to pull things
apart and put them back together. He also likes container playing, he
has always liked putting things in and taking them out. He also loves
ball ramps. His newest toy is a magnectic toy it's for ages 3+ the
pieces are really big so he cannot swallow them. They are similar to
the Magnetix toys that have been all the craze, I found Kean's set in
the same aisle. Kean also is into Disney movies on DVD, he really
likes the computer animated ones like Finding Nemo, Toys Story 1&2,
Meet The Robinsons, Madagaskar and Ice Age 1&2 just to name a few.
>
> Karla & Kean 10 AS Del+
> Iowa
>
>
>
> ----- Original Message ----
> From: Chantel Borquez <c.borquez@...>
> To: familiesofangelmansyndrome@yahoogroups.com
> Sent: Sunday, January 6, 2008 5:22:15 PM
> Subject: Re: [Families of Angelman Syndrome] My Son Dylan
>
> HI my name is Chantel
> I live in Tucson, My son is six years old he got
> diagnosed with Angelman when he was 12 months his name
> is michael we call him Jr. He is a very happy boy he
> scoots on his bottum, he is non verbal he does shakes
> his head yes or no. sometimes I fell bad when i'm
> doing to many things at home like cleaning and so on.
> Because he will sit there or play with his one
> favorite toy I have bought him so many different toys
> so he doesn't look so bored but he just is not
> interested of any toys. How does your son keep him
> self busy do you have any suggestions.
> --- Karla Dostal <mom_angelboy@ yahoo.com> wrote:
>
> > Donna,
> >
> > I thought I would just share Kean's background with
> > you. I thought that would help to know us a little
> > better.
> >
> > We actually knew something wasn't quite right at 2
> > weeks of age. He had Aspiration Pneumonia and was
> > just fussier and sicker then he should have been. He
> > was in the NICU for 2 weeks on oxygen and came home
> > with oxygen and had it for a month. Kean started PT
> > at 4 mos of age. He could not lay flat on his back.
> > At 7 mos he could barely lift his head of the floor.
> > He had what we thought could possibly be seizures
> > starting at about 6 mos of age. The Dr's and PT
> > ruled it his body not knowing where he is in space.
> > Sounded logical. At 17 months he had his first
> > positive seizure. He then had an EEG and it showed
> > his brain being in Status. That means he is having
> > seizures in his brain every moment of his life if we
> > see them or not. He had been diagnosed with
> > Cerebral Palsy at 1 yr of age. My husband & I
> > diagnosed him with AS at 20 mos, that was after a
> > family in a close town told their story in the paper
> > about their son with AS. Kean fit everything about
> > their son. We took that information and told the
> > Dr we wanted him tested for AS and within 5 weeks we
> > were right. AS-Deletion Positive. He truly fits
> > most if not all the characteristics of AS.
> >
> > Physical Abilities:
> > Kean was able to sit up if placed at 8 months. He
> > would however fall over if he looked up.
> > I believe he started rolling over both directions at
> > 10 months. He held his own bottle for the first
> > time at 14 months. He didn't commando crawl until he
> > was 17 months after his first set of visible
> > seizures. He didn't learn how to sit up on his own
> > until he was 2 1/2 years old. That was after a week
> > of seizures. He started scooting on his bottom when
> > he was 3 yrs old. He started in a Gait Trainer when
> > he was 3 yrs old. He tried pulling up to the couch
> > when he was 4 yrs old. He could 4 point crawl when
> > he was 5 yrs old. Kean moved into a Kaye Walker
> > when he was 5 1/2 yrs old. He still uses it now at
> > 10 yrs old. He will also walk with someone holding
> > onto one hand. He cannot get off the floor to a
> > standing postition by himself.
> >
> > Kean is an 10 yr old dark blonde hair, gray eyed
> > boy. He is very happy. He is able to walk with the
> > aide of a walker and with lots of hands on
> > assistance. His main mode of transportation is to
> > scoot across the floor on his bottom. He will on
> > occasion 4 point crawl. He uses a pacifier and
> > drinks from a sippy cup. He has only been using the
> > sippy cup for a year.
> >
> > He has many different kinds of seizures but the
> > quantity is small. He is vocal but non-verbal. He
> > understands the concept of the Big Mac. He is
> > starting to understand PECS (picture exchange
> > communication system). He really enjoys looking at
> > pictures of people. He does mouth toys, but less
> > frequently then in the past. He does not have a
> > fascination with water. He does enjoy putting his
> > hand under running water as long as it is warm. The
> > bath tub isn't anymore thrilling for him then it is
> > for my typical son. Kean is extremely laid back. I
> > am able to leave him alone in our living room and go
> > down in our basement and when I come back up he is
> > still in the same spot. We do not have any gates
> > up. He loves to play with stacking toys and
> > buckets. He loves to put toys in a bucket ( i.e.
> > shoes,) and then take them out again. He loves
> > watching DVD's on the TV. He does not use hand
> > gestures or pointing. He does scoot to the person
> > he wants and fusses
> > until they pick him up. He does enjoy playing with
> > other children and especially his big brother Jace.
> > He is able to sit in a classroom with his typical
> > peers and be appropriate at school. He does have
> > his aide sit beside him. He very seldom pulls hair
> > or bites, if it happens he doesn't do it in a mean
> > way. He does not wrestle but you will be crawled
> > over if you lay on the floor. He does not flap his
> > arms. He does walk with one arm flexed at the
> > elbows when he is walking with someone holding his
> > hand. When he is in his wheelchair or in the car
> > seat his arms are flexed at the elbows as well. He
> > will put them down sometimes but more often then not
> > they are flexed.
> > He does have tremors daily.
> >
> > Medications he is on are:
> > Depakote & Topamax(for seizures)
> > Singulair (For Asthma),
> > Diazepam (as needed for seizures),
> > Miralax (For Constipation)
> > He has been hospitalized 20 times mainly for
> > dehydration and seizures.
> > He weighs 53lbs. He is 4 ft tall. He is the average
> > size of a 7 yr old.
> >
> > Kean used to take Phenobarbital. It made him
> > extremely grouchy.
> > He is taking Depakote 250mg AM and 250mg PM. He is
> > also taking Topamax 50mg Am and 100mg PM.
> >
> > Kean also has an Enclosed bed. His is called a
> > Sleep Secure Bed it was made locally. It is a Twin
> > Size Captains Bed with padded poles and a mesh
> > enclosure that zips him in. We also have a top cover
> > whenever he is able to start climbing. His sleeps
> > habits have improved since he got the bed. He was
> > almost 4 when we finally received it. He usually
> > goes to bed around 10:00-10:30 and sleeps until
> > about 6:00am.
> >
> > About school:
> >
> > Kean attended a full inclusion preschool for 2
> > years. He had a one on one aide (me his mom) while
> > he was there. I was hired by the school district to
> > be his aide. When he graduated from preschool and
> > went to Kindergarten he received a new aide. She
> > has been with him for 6 yrs. He did 2 years of
> > Kindergarten, 1 yr of 1st, 2nd, 3rd and he is now in
> > the 4th grade. He attends our local public school.
> > He is considered Partially Included: that means he
> > spends time with his Regular Ed peers in their
> > classroom and specials and he also spends time in
> > his Special Needs classroom working on his goals.
> > He has many friends and is doing great in this
> > environment. He receives PT and Speech at school.
> > The do not treat him any differently. They talk to
> > him as if they are expecting an answer and don't
> > seem to notice or care that they are not getting
> > one.
> >
> > I still work as a special ed assistant this is my 8
> > yr. I work at the same Elementary school that Kean
> > attends.
> > I have worked with many children who are a lot like
> > Kean in their skill level. They have all been
> > non-verbal and non-mobile or they need some
> > assistance to be mobile. The child I work with has a
> > Traumatic Brain Injury, he was shaken when he was 9
> > months old. He is doing fantastic and is way above
> > his typical peers in Kindergarten, I have been with
> > him for 4 yrs.
> >
> > Sorry it's so long.
> >
> >
> > Karla & Kean 10 AS Del+
> > Iowa
> >
> >
> >
> > ----- Original Message ----
> > From: Donna ODriscoll
> > <xxdodriscollxx@ btinternet. com>
> > To: familiesofangelmans yndrome@yahoogro ups.com
> > Sent: Saturday, January 5, 2008 3:48:15 PM
> > Subject: Re: [Families of Angelman Syndrome] My Son
> > Dylan
> >
> > Hi Karla
> >
> > He isn't crawling or scooting or anything yet. He
> > still has very low muscle tone in his chest which is
> > improving all the time. It's strange because he is
> > the strongest child I've ever met. Maybe this is
> > part of Angelmans??? If he lies on his tummy he
> > can't support himself on his arms, he can lift his
> > head and shoulders though.
> > He has physiotherapy but it hasn't helped that his
> > reflux has been so bad. Everytime they tried to do
> > anything with him he was sick everywhere. The
> > tablets I mentioned are working now so fingers
> > crossed he'll start to progress this year.
> > As for drinking, he doesn't drink very much at all.
> > He will drink from a sippy cup that's not valved.
> > But he bites the top as he's drinking and a cup will
> > last him all day and he probably won't finish it. He
> > goes to a special needs nursery (which is an amazing
> > place and he loves it) and this is what he uses to
> > drink from there. I use fruit shoot bottles. I don't
> > know if you have them in America, you probably do,
> > by Robinsons. They're a bit like unvalved sports cap
> > bottles and he has juice & flavoured water in these.
> > I find he drinks more from these approx 200-250ml a
> > day.
> > He has a wicked sense of humour and you can see the
> > mischief in his eyes. He can't crawl but he can
> > wriggle to wherever he wants to go if he wants
> > something badly enough.
> > I took him out of his cot about 4 months ago and
> > into a cot bed with a Tomy bed rail. He gets on with
> > this very well. He's having a specially made foam
> > padding
> === message truncated ===
>
> ____________ _________ _________ _________ _________ _________ _
> Looking for last minute shopping deals?
> Find them fast with Yahoo! Search. http://tools. search.yahoo.
com/newsearch/ category. php?category= shopping
>
>
>
>
>
>
______________________________________________________________________
______________
> Looking for last minute shopping deals?
> Find them fast with Yahoo! Search.
http://tools.search.yahoo.com/newsearch/category.php?category=shopping
>
> [Non-text portions of this message have been removed]
>