Hello All,

I am new here, but very glad to have found this group. My son (now
27 months old) was diagnosed with Noonan Syndrome last fall because
of failure to thrive. Since then, I've done lots of reading to try
to educate myself. We are very lucky that he demonstrates only a
few symptoms... short stature, low weight, one undescended testicle
(which was corrected last fall), and a very slight slant to his
eyes. Overall, he is developing very well with incredible
speech/language capabilities for ANY child his age, no heart
defects, no vision or hearing problems that we know of, normal
developmental milestones, etc. I feel very lucky that he is as
healthy as he is.

However, all is not perfect...I am hoping someone here might be able
to offer advice or share a similar experience. I have been taking
my son to a pediatric gastroenterologist for 9 months or more now
because he was refusing to eat and had periods of recurring vomiting
(not cyclic vomiting) and very low weight. The Gastro put him on
30mg Prevacid for GERD. Nevertheless, the vomiting and not-eating
continues. He will go for months with no vomiting, and after a
while he starts to eat a little more normally. Then he goes
through a period where he will vomit 1-2 times per day for about 10-
14 days straight. Sometimes he vomits because he gags on food...
foods that should not cause a person to gag. I have seen him gag on
mashed potatoes, yogurt, oatmeal, lots of things. Other times, he
vomits after he is completely finished eating, or as much as several
hours after eating. Other times, he vomits because he's crying or
excited or laughing. This all goes on for a couple of weeks, then
he goes again for months without problems. During the non-vomiting
phase the gagging stops, for the most part. He may gag on a large
piece of food that hasn't been chewed well enough, but it won't
cause vomiting. He can laugh, play, cry without vomiting, etc. He
gradually starts eating again after a month or so.

It doesn't seem to cause him any discomfort, surprisingly. He
throws up and then goes right about his business. We don't usually
have any warning or sign that he's feeling nauseous. He doesn't get
upset about it or seem to be in any pain. (Believe me, he would
tell me. He is VERY capable of telling me exactly what is wrong.)
His weight has increased since being on the Prevacid. He went from
not even registering on the growth percentile charts to being at
approximately the 13th percentile, so that's great. But I am
concerned about the unexplained vomiting. I worry he will damage
his esophagus or that the vomiting could be a sign of something else
that the doctors just aren't catching. And it concerns me that he
seems to not want to eat because he knows he might gag or throw up.
He KNOWS that it happens. He sometimes tells me, "I choke" even
when he's not really gagging. So, there are already psychological
effects from this recurring vomiting.

I don't know what else I can do at this point. No one seems to have
any suggestions as to why this is happening or what we can do to
find out what the cause might be. I think they all just want to
blame it on the Noonan Syndrome and hope that he outgrows it as he
gets older, but Noonan Syndrome itself doesn't cause vomiting. (ie.
babies with feeding problems have the problems because of arched
palates for example... not because of Noonan Syndrome itself.) I
want to know what is causing my son's vomiting and what we can do to
minimize or stop it from happening.

I am hoping that someone else might have had a similar experience or
can share some wisdom on the subject. Am I being overly worried?
Do any of your children have this same oddly recurring vomiting? How
do you all cope with this sort of thing?

Sorry for posting such a LONG first message. Anyway, I look forward
to reading your responses as well as getting to know other parents
of Noonan Syndrome children. Sometimes I feel like my child is the
only one, so I am sure it will be helpful to talk with other parents
who are going through some of the same things I am.

Thanks!

Pam