Invisible Palate or Weak Muscles

[Judy Parker]

Folks, I am very new at this! But have done a whole lot of
reading since we have found my 3 year old son has some form of
palate problem. We still have not been able to diagnose it
accurately or define it. Hoping maybe you guys could help. My son
was 2 months old when we arrived in Okinawa Japan. We had no idea
he would have speech problems, but he does. After age two and
unable to complete sentences must along two words connected I
sought help for him. ENT here put a camera probe down his throat
but could not get any accurate information, because my little one
would not speak for them. Yet, the doctor found he had very large
tonsils and we had them taken out on Dec.5th, 97. Keifer has
nasal emissions when speaking with fricitives and consonants.
Doctor mentioned the palate was not working correctly, and he may
have weak muscles. So now we are in speech therapy. This is the
best they could do , On Military facility were there is no team.
We will move to the US in two months, can you all tell me what i
might need to do to further insure, my little boy is getting the
best diagnoses and treatment. Also, I read some articles
concerning invisible palate's could this be possible. Thank my
email is parker00@mwrmarine.or.jp

[Dave Waters]

Judy:



I tried to reply by e-mail, but the server bounced it back -
couldn't find the e-mail address in your message, I guess.



I read your post dated 26 Apr to <a
href="http://www.cleft.org">http://www.cleft.org</a> (Smiles)
with great interest as some points are very similar to what our
son Tim, just turned 4 years old, has exhibited. We live in
Somers, CT and have access to several major medical/pediatric
centers in Springfield, MA, Hartford, CT and Boston. Tim was born
normal size, weight, etc., after two normal healthy sisters (now
8 and 7). He didn't seem very interested in eating after a few
weeks and went down in the % -iles for weight, otherwise OK. He
didn't sit up 'til 8 mos. or so, and didn't walk until at least
18 months. Never really talked until about 3 and then with only
one word at a time; he is only now stringing words in groups of
2, sometimes 3 and has great difficulty with fricatives and
consonants, which now sound very nasal in character. His active
vocabulary is very limited (perhaps ~30 words), even though his
receptive vocabulary is in the hundreds. He can understand
anything his sisters can, knows where everything is in the house,
can follow verbal instructions perfectly, is very good natured,
etc.; he just cannot really talk.



As a younger child, he was plagued by ear infections; &
has had 3 sets of ear tubes put in, and recently, adenoids
removed. He had very loose joints, and when younger, his head
tilted to one side indicating muscle imbalance of undetermined
cause, which has now gone away, along with hypotonia (although
very good strength) and a gait like a sailor on liberty, which,
while much improved, is still evident. Ever since he started to
drink with a straw, if he swallowed too quickly or drank too
fast, liquid would run out his nostrils. No one thought too much
about this until recently when his speech pathologist said his
nasal speech (thought earlier by the ENT to be "deaf
speech" caused by his ear infections, although it now turns
out that his hearing is normal) and his swallowing/nasal overflow
put her in mind of cleft palate patients. The bony portion of his
palate appears normal, but she said that it may be very
weak/un(under?) developed palate muscles which don't block the
airway when he swallows. We think her observations make more
sense than most others we have heard from the MD's. The ENT has
recommended further tests on the palate area; more to follow...



He has undergone neurological testing and evaluations every 3
or so months since he was 18 mos., involving EEG's, CAT scans,
MRI's, blood/chromosome tests, the works. So far, evaluations are
that he has "developmental problems" (we KNOW there are
developmental problems, but after 2 years we are still trying to
find out what sort and what, if anything, we can do about them),
rather than degenerative, but all the specialists say so far is
that they can't decide on anything specific and hope he will
continue to show slow but steady improvement, even though they
admit they may never really figure out what is wrong with him.
The neurologist wants him tested in Boston by pediatric
pathologist/neurologist specializing in metabolism problems of
lipids, which can supposedly create developmental problems ... We
just don't know.



As Tim has had intervention or another since he was 2
(OT/PT/ST) and we still don't really know what is going on, I
must caution you not to expect miracles upon your return to
CONUS; you _must_ be your son's advocate, as the chronic, rather
than acute, nature of this type of symptoms tends to engender a
"wait and see what happens in 3 months or so" attitude
in the pediatric medical community. It's very difficult to
inspire any real sense of urgency, even though pretty soon our
son will be subject to peer ridicule for his speech; also,
if/what problems are discovered may be more difficult to correct
later on.



I wish you all the best at trying to get to the root of
Kiefer's problems and in establishing a beneficial course of
action to help him. Please let me know of any more information
you have or are able find out in the future with regard to palate
muscle development problems or speech problems. I will be happy
to keep you informed if we find out anything which may be
relevant to your son.



Best wishes,



Dave Waters Somers, CT <a href="mailto:dmwaters@javanet.com">mailto:dmwaters@javanet.com</a>

[Jeff Alterman]

You may be dealing with a submucous cleft palate. Sometimes a cleft palate can be "invisible". I have a submucous cleft hard palate myself and there are issues connected with it that are all minor. Jeff Alterman at alterman@bestweb.net