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

Tess likes spicy or unusual tasting foods and has eaten them since a 
tiny girl. Foods such as:- Hommus, Taramasalata, smoked salmon, mild 
curries, pate, (home made).

At 04:40 AM 1/06/2008, you wrote:
>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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Jocelyn, loving Nanna to Tess with Trisomy 18, age 11 years
. 

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

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