[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. 
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 £3000 - £8000 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 



-----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.


      __________________________________________________________
Sent from Yahoo! Mail.
A Smarter Email http://uk.docs.yahoo.com/nowyoucan.html
                  Building ___ooOOoo__ Rainbows
                      www.trisomyonline.org
                  Families Helping Families On-line


                  Building ___ooOOoo__ Rainbows
                      www.trisomyonline.org
                  Families Helping Families On-line


      
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line


      __________________________________________________________
Sent from Yahoo! Mail.
A Smarter Email http://uk.docs.yahoo.com/nowyoucan.html
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: