[tri-med] Re: (no subject)

----- Original Message -----
From: <MCS811@xxxxxxx>
>> I apologize
> in advance for any really silly question I might ask.

Don't ever apologise for asking questions. Remember that at some stage we
have ALL asked the same ones!!

>>He loves it but it creates more siliva than he usually has.  He
> starts coughing something awful and I stop for a few days.  I don't know
if
> this is okay or am I doing something right.

The fact that he is coughing is GOOD. It means that his reflexes are working
and that he is clearing the problem. Never try and stop him from coughing.
Better you wear the food than it end up in his lungs!!

Personally I don't think you are dealing with an allergy. Rice is one of the
safest foods to start with, very few people have allergies to rice. Plus in
babies allergies tend to be much more pronounced.

I have some more questions though - has Brendan had his cleft palate
repaired?? Is/was the cleft in the soft or hard palate?? When he vomits does
it come back out his nose sometimes??

When they did the modified swallow, did they watch him on thin liquids and
then say it was OK to feed thickened without seeing him handle thickened? Or
did they watch him with the thickened and then say it was OK? If the speech
pathologist /occupational therapist hasn't watched him eating the
solids/thickened fluids  then you need to get her to.

It sounds to me from your description that Brendan is having trouble with
his swallow and thats where I would start in trying to solve the problem.
You need to bring it up with your speech therapist/occupational therapist
(whoever is doing his eating therapy) as a matter of importance. Get her to
actually watch him eat the whole thing. If he is tired when she does all the
better.

Children with T-13 tend to have a swallowing problem called dysphagia, more
so than T-18. If they haven't repaired the palate he could also have
velo-pharyngeal- insufficiency. Plus its more than likely that he has oral
motor praxis - this manifests itself in babies with an inability to
co-ordinate all the movements necessary for eating. (its actually a very
complex process to co-ordinate eating - try eating something and think about
every tiny movement involved)

It is possible that when he is drinking the thickened fluids that he is not
co-ordinating his swallow well. Some of the liquid could be going into his
nasal passages. In itself thats not a problem. The problem is that it then
"drips" back down into his mouth when he isn't suspecting it. Its called
"pooling" If he has trouble then co-ordinating the swallow it takes him by
surprise and starts to trickle into his airway. Our airway is always open,
and we close it off when we eat)

When the food hits a certain point before it goes into the airway it
triggers a reflex that starts you coughing to clear the food out of the
airway and stop it getting into the lungs. (ever gone to swallow something
the "wrong way" and had a coughing fit at the table - same thing)

If the coughing doesn't work, or isnt there as in some babies, the food goes
into the lungs and causes what they call aspiration pneumonia. This can be
very dangerous and lead to major problems, even death.

He could possibly be pooling the food elsewhere in his upper digestive
system. Devon, Penny's son pools his food as well, and from memory he has a
"pocket" in his oesophagus where it pools (Penny??)

Similarly the extra saliva and secretions could be coming from the same
problem, especially if some of the food is going into the nasal cavity. It
causes irritation of the nasal membrane, just like an allergen, which in
turn produces mucous. Because mucous is thicker than saliva it can be harder
for our kids to process (its more the texture of food) and so they choke on
it. Also just having food in the mouth can cause more secretions.

I doubt that a doctor that would rush in and try and decrease the secretions
if the problem is mainly at meal times, especially in a child with eye
problems and if there is an easier solution. The secretions are there for a
reason and protect vital and delicate membranes. All drugs have side effects
and Brendan is very young to be giving this class of drugs. You need to find
the reason and treat that.

If it is a significant problem with regards to choking and aspiration they
may start with giving you a suction machine. I think almost all of us have
owned a suction machine at some stage.

The problem with suctioning is that the more you suction, the more
secretions you create. (suctioning iritates the membranes and causes more
mucous to be produced). Though if you are going to aspirate anything
secretions and water are the best (I still dont recommend it!!!) as they
don't ordinarily contain many bugs that the body isn't used to. Its adding
things like food and stomach acids that cause the most problems when they
get into the lungs.

So in short I would go back to whoever is supervising his feeding therapy
and ask them their opinion. Just make sure that they watch the whole feed,
not just the first few mouthfuls. Our kids tire easily and so their swallow
deteriorates. Often in a modified swallow they only watch the beginning,
what they miss in doing this is the fact that their swallow may deteriorate
significantly as they get fatigued.

You are right to be concerned because the last thing you need is
pneumonia!!! Also I would make sure that someone has shown you how to
resuscitate a child who has choked on saliva. I have maintained a first aid
certificate since my teens and do my 3 year refresher courses religiously. I
have even been in the position where I have had to resuscitate someone
(before Alex) But when Alex choked on saliva I was really panicking.
Clearing an airway of a foreign object is easy compared to trying to clear 6
miles of secretions and saliva without a suction machine in the dark is
scary!!!

Just another perspective on the problem - I hope you find an answer soon!!!

Wind moving through grass so that the grass quivers. This moves me with an
emotion I don't even understand.
- Katharine Mansfield

Keep Looking for Rainbows!!!
Karen, Mum to Alex (7, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

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

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