[tri-med] Re: oral sensitivity - black hole spots?

Our speech therapists and doctors have also told us that kids with an =
oral
aversion sometimes like the more savory and spicy foods, as opposed to
sweets.  I guess it helps reduce cavities! :)


Jennifer Vanderbeek
Meridian, ID
Mom to Arwen, 10; Elanor (T18), 8; caregiver to Joe (CP), 29, and wife =
to
Andrew

Visity Elanor's Caringbridge site at:

http://www.caringbridge.org/visit/elanoranne=20



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] =
On
Behalf Of Katy Roberts
Sent: Friday, May 30, 2008 1:03 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: oral sensitivity - black hole spots?

I had a chat with a speech therapist today about my sons gagging and
vomiting to clear and amongst some of things you have all mentioned to =
me
she said that some kids get what is called a 'black hole spot' in the =
mouth.
This can be the size of a pin head (as she described) or as big as your
thumb or bigger. Anyway. a black hole spot is where your child can be
munching away on food and if it goes onto the part of the mouth with =
this
spot then the child doesn't feel it - its like a blind spot, it can by
neural. Then if the food tries to go down the throat or is moved by the
tongue out of the spot then the child can suddenly feel it and gag. I'd
never heard of this before but she seemed to know what she was talking
about. But as I have been reading there are loads of reasons that be the
cause of gagging and vomiting to clear his throat.=20
We had a change over of speech therapist today as in the UK when your =
child
is due to start school (and they are receiving speech therapy) their =
speech
therapist changes to an educational one. She seemed really clued up and =
is
the 'sign a long' expert in her department (which is my sons main form =
of
communication) so she politely explained that some of the signs I have
taught my signs were the incorrect ones so now I have to teach him the
correct ones and confuse him even more - bless him - what a crap mum I =
can
be!! I am hoping she is more proactive that his speech therapists so =
far. We
have an appointment on Monday with her and a communications device =
expert to
assess my son for what type of communication device he may need in the
future - they range in price from =C2=A33000 - =C2=A38000 and up. She =
said we may
have to pay for it as well so yet more expense. I know Taylor has just =
had
some kind of device - How is that going Gina? Does anyones elses =
children
 use one or do you have any advice on the better types. The therapist =
also
asked if my son liked different types of foods I said that he loved =
tasting
all types of foods but he doesn't chew or bite and swallow them and we =
said
how he loves curry and chillie. She said that there is a type of oral
undersensitivity that makes children more into spicy food and said she =
would
have been happier if we said that he liked milder food - I have read =
about
this but because of his gagging i thought if anything he has an over
sensitivity. Oh I am confused.
Katy. son t8 mosaic.


----- Original Message ----
From: Yazmin castro <beaunkev@xxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Friday, 30 May, 2008 3:17:42 AM
Subject: [tri-med] Re: oral sensitivity

Hi Kathy,
 My daughter Kira gags at any time of the day even when she is not =
eating
and it fustrates me. She is 20 months and we have been getting her to =
eat by
mouth for the longest but she is so sensitive.  If she feels anything =
inside
her mouth or even around her mouth her first reaction is to gag and
sometimes she composes her self but sometimes her loud gag will come =
next.
She does have some reflux and had a fundoplication done twice and she is =
on
meds. It seems to work good because she doesn't vomit. I just wish I =
could
take that her gagging away it just looks so painful sometimes.
 Yazmin- BT (7,10)los angeles, CA, USA
Proud mother of baby Kira (20 months)Partial trisomy 10p, and she loves =
to
talk.
Expecting our second child (12 weeks)amnio on June 23rd.


----- Original Message ----
From: Jennifer Vanderbeek <phil46@xxxxxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Thursday, May 29, 2008 4:15:17 PM
Subject: [tri-med] Re: oral sensitivity

Katy,

A lot of disabled kids have oral aversions.  There are a lot of reasons, =
but
I'd be willing to bet reflux is a key in your case.  I'm not a doctor or
anything, but I do know that reflux has a myriad of symptoms and
complications.  It's amazing how smart babies and little kids can be.  =
They
figure out that when they eat they are uncomfortable or even in pain, so
they don't eat.  I would take him to a good gastroenterologist or ear =
nose
and throat doctor and try a swallow study.  It will show reflux, or =
other
possible problems with digestion.  It may be that his digestive system =
is
sluggish and when the food doesn't go down quick enough, it will go up!
Problems swallowing might also be an issue.  A swallow study would show =
if
he is swallowing air with his food, which would cause all sorts of =
problems.

Hope you can get to the bottom of this!


Jennifer Vanderbeek
Meridian, ID
Mom to Arwen, 10; Elanor (T18), 8; caregiver to Joe (CP), 29, and wife =
to
Andrew

Visity Elanor's Caringbridge site at:

http://www.caringbridge.org/visit/elanoranne=20



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] =
On
Behalf Of Katy Roberts
Sent: Thursday, May 29, 2008 10:20 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] oral sensitivity

Hi Everyone,

My son's has oral sensitivity and gags sometimes on food when it has =
been
mashed. He was born 3 months prem and was very poorly so we did spend 6
months in hospital with him when he was born. He is nearly 4 now and is
doing well, he has a few issues like sight problems, very delayed =
speech,
not walking etc, etc but considering his start he is well. Something =
that is
bugging me at the moment though is his eating and gagging. I read =
somewhere
the other day that in a study of prem kids that had spent alot of time
interbated or with a nasal gastric tube they had big oral sensitivity. =
Do
any of your kids have this issue? Everytime he seems to be making leaps
forward with moving onto lumpier consistencies he then leaps back again
after a few weeks and we are back to mashing or pureeing. He also has =
alot
of what we call 'ups and downs', he had horrendous reflux for the first
couple of years but it gradually got better but I think it is still =
there -
my husband
thinks its 'just wind' but this just wind makes him sick sometimes or he
has difficulty getting the burp up - he does get alot of burpy wind - =
why? I
am not sure. I have notied of late that he gulps his drinks so I only =
give
him small amounts know and he asks (signs) for lots of drinks during =
meals
almost like he is washing his food down. The speech therapist is driving =
me
insane with his speech and feeding therapy -  the other day I nearly =
broke
down and asked here was there something else she would bedoing if my son =
was
her child she said that we as parents were doing everything!!!!
Any suggestions / tips greatly accepted as I am ripping my hair out!

Katy son t8 mosaic.


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