they did the same thing to alex they took him off all food by mouth. they said that he cant eat by mouth till he has a nother swallow study done and the doctor said he wont have one for at least 6 mo.  The doctor also said that the fundo and the tube usualy fix the aperating.  I dont understand how but thats what they told me.  Maybe that info can help you        mandi 

jdials@... wrote:

what about a pH probe for Reflux.  There is silent reflux that may not show up on a swallow study.  Does he have lots of ear infections?  That could be a sign.  In my little ones case there was similar eating issues and what we though were allergies and lung issues that we thought was asthma.  All turned out to be complicated by silent reflux.  She was allergy tested (recommended not to be done before two for better accuracy) no allergies.  Then we did the pH probe and what did you know, major reflux, she did the probe on full adult dose of previcid and major reflux all the time.  Nissen fundoplication and g-tube to try to get on the growth charts and now she is improving.  I know his lung issues where caused by the meconium aspiration, but are they still getting worse? 

 

 

Jamie Dials
Analyst, Spiriva
Submissions and Inspections Subteam
(614) 276-4000 ext. 2047
Pager: (614)510-8700

-----Original Message-----
From: tkea0103 [mailto:tkea0103@...]
Sent: Wednesday, June 30, 2004 5:57 PM
To: feeding@yahoogroups.com
Subject: [feeding] New with a few questions

Hi...first some background.  My son is currently 16 months old and
weighs 18-1/2 pounds and is about 30".  He was born term.  He was
born with severe meconium aspiration syndrome.  He was put on ECMO
(heart/lung bypass) for a week and was on mechanical vent for 3
weeks.  He had seizures twice in the first week and was on
phenobarbitol until last October.  The ECMO caused a blood clot in
his renal artery which caused high blood pressure for which he is
still on medication.  He is on asthma meds since his lungs were so
badly damaged and takes zyrtec for allergies (not sure the
culprit).  He currently sees PT, ST, and a nutritionist through
ECI.  We are adopting him so missed the first 4 months of his life. 
He has never been a great eater.  He went through a period where he
would throw up everything solid we tried to feed him.  At the time,
the OT thought it was behavioral. 

Fast forward to now....he is still not a good eater (on most days I
would say a poor eater).  He is not throwing up much (not sure what
changed) although still does it from time to time.  Sometimes we are
pretty sure it is behavioral and others we are not sure.  He is
currently drinking pediasure and I add dry powdered milk to it to
boost the calories to 37cal/oz.  He enjoys the concept of
eating "real" food (loves to sit in the high chair at dinner
and "eat") but usually not much ends up in his mouth.  So far the
only tests he has had are a swallow study and a barium swallow/upper
GI (everything looked ok in both).  We are seeing a Ped GI.  He has
not wanted to run more tests because he says first of all he isn't
gaining because he isn't getting enough calories (no argument there)
and second of all, if something GI related was going on he would
have other symptoms beside slow/lack of weight gain (ie loose
bowels, constipation etc).  His only "symptom" is not gaining.  He
is very active (part of the problem) and pretty much on target
developmentally (not counting speech). 

I guess my first question is...should I push for more tests to be
run (allergy test, thyroid, cf, celiacs etc) even though we have no
others symptoms present?  He is getting too few calories, but he
just rarely seems hungry and forcing him to eat is not an option and
wouldn't work anyway because it would just turn into a battle. 

Second question....how are you getting perscriptions filled for
periactin?  My sons developmental ped recommended it and when I
mentioned it to his GI doc he said it was no longer availble because
it was taken off the market?  It might not be an option for him
anyway because of his high blood pressure but if it is still
available I would like to at least discuss the possibility of using
it.

Thirdly...any advice/info (pros/cons) on tube feeding would help as
well.  We don't want to have to go this route, but are at least
keeping it as a last resort option (we just don't know when that
last resort is)

Thanks
Krys           



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