Hi, Heather.  I also have a little girl who does not eat well.  She is 15 months
old.  Up until the last 2 weeks she did not eat anything.  We introduced baby
food at 5 mo old, which she seemed to love.  Then, just like someone flipped a
switch, she just stopped eating them.  Since then we have been on a 10 month
journey of feeding refusal/difficulties.  We have not yet been able to pinpoint
the exact cause, but her ST and OT suspect some mild sensory issues (sensory
integration disorder) and dyspraxia.

I would also like to say that you have joined a wonderful group.  Support is
just what you need to survive this.

If you would like to know more about my story just let me know and I will be
more than happy to share it with you.

Betsy

--- In feeding@yahoogroups.com, "Heather" <hmeyer626@...> wrote:
>
> Hi, I just joined.  My 18 month old daughter has a feeding disorder.  She has
a gtube.  We are still uncertain of the cause of this, she has done a lot of
different tests and such, but no one knows yet why she stopped eating.  I'm just
looking for some support.  Thanks!
>

Hi, I just joined.  My 18 month old daughter has a feeding disorder.  She has a
gtube.  We are still uncertain of the cause of this, she has done a lot of
different tests and such, but no one knows yet why she stopped eating.  I'm just
looking for some support.  Thanks!

Erica,  How long did it take for the Periactin to begin working for increased
appetite?  We have been on it for about 5 days now and I haven't noticed much of
a change...if any.  Her GI said we should know if it will work in about 2-3
weeks.  Does it really take that long?  We are seeing an OT and ST, and have
been for about 3 months.  It is obviously very slow going though, as I haven't
seen much improvement at all.  This is so frustrating, needless to say consuming
and worrisome.

--- In feeding@yahoogroups.com, Erica Wilson <ericaleigh03@...> wrote:
>
> Hi,
>
> My son has been on Periactin for almost a year now.  It's helped us a lot.  I
think it works differently on every kid- some experience a big appetite boost,
others just a small one.  With my son, the GI has him on it for 6 weeks, then he
goes off for 2 weeks (because it starts to lose its effect the longer it's in
the system), then back on again.  We notice the biggest jump in appetite when we
first start him on it, and then it kind of serves to be a general, subtle help
for a good month, and then we notice the effects wearing off again.  He never
has any side effects, other than it making him sleepy when he started taking it
a year ago.  Now he is totally used to it and it has no negative side effects. 
I hope that your sweet daughter gets some help from it, too!
>
> Also, feeding therapy (with an occupational or speech therapist) worked
wonders for us (though it did take a long time).  It's definitely worth checking
into!
>
> Good luck,
> Erica, mom to Eli (18 months).
>

Interesting Susan.  I hope we don't have the 666 effect.  We already struggle
with some really bad temper tantrums.  We don't need anything to top them off.
I also read your post about the Probiotic.  The only problem is that I can't get
her to drink/eat anything much other than her formula, which is warm and would
kill those good bacterias.  I have some in our fridge, but can't get it in her. 
I would love to be able to, as they are so good for them.  Not sure what to do
about that until she will eat or drink some cool stuff.  Thanks though.

--- In feeding@yahoogroups.com, Susan Lake <eanizer@...> wrote:
>
> Periactin is used for a lot of different things. It seems most people I hear
> talking/writing about it are on it for appetite.
>
> My daughter is on it for motility, only. Over a year now and Mon - Friday
> only. It has nothing to do with her appetite at all. She is 3.5 years old
> and doesn't eat any measurable amount of solids in one day. It is not
> behavioral, every doctor, therapist who has seen (well except one GI who
> couldn't get her inflated ego once we learned of her motility disorder) that
> it is not behavioral in the sense she is just refusing. Lots of a bad
> experiences which mainly involve vomiting after food is in her tummy.
>
> Anyway, the periactin is used to help her severe motility issues. It helps,
> but she does have side effects. Because Periactin works on the serotonin
> levels in her in both gut and brain, it causes some 666 like behavior. Best
> way I can describe it. She becomes very self abusive, violent outbursts,
> etc. We tried to reduce her amount to reduce the behaviors. Behaviors
> reduced and motility issues returned and landed her in the hospital 11 days.
> So now she is on Celexa to help her tolerate the Periactin. Which it has
> greatly. We still have some off days...
>
> Reiley has been in feeding therapy since she was 15 months old... we did get
> past some oral aversions, and she asks for food all day long.. but for
> whatever reason she just isn't able to tolerate any substantial amount
> without getting sick... just like her formula pump feeds, she can't tolerate
> anything more than what she is getting which is a total of 31 oz day. 16 oz
> split into 4 one hour bolus pump feeds and a 10 hour 15 oz over night feed.
> 837 calories per day. Which they changed while she was in the hospital,
> because she was on 3 feeds during the day and stopped being able to keep
> those down.
>
> Good luck, the world of feeding is so very different for all of us.
>
> Susan mom to Reiley 3.5 years old/unspecified metabolic disorder/AZ
>
> On Tue, Nov 10, 2009 at 8:58 PM, Betsy <bwintermantel@...> wrote:
>
> >
> >
> > Has anyone ever tried Periactin to help stimulate appetite? Did you have
> > any luck with using it? Did your child experience any side effects?
> >
> > My now 14 mo old is still not eating solids. Still chewing up food and
> > spitting it out. She may swallow 3-4 bites a day. She readily accepts things
> > in her mouth, at least most of the time. Her problem is swallowing them. She
> > doesn't even really try to anymore. She just puts the food in, chews it up
> > and spits it out...over and over. Her EGD revealed yeast esophagitis a few
> > weeks ago. She completed her course of Diflucan, but there has been no
> > change in eating. I am thinking it has either become a learned behavior, due
> > to yeast and maybe a little sensory related, or this is totally a behavior
> > problem. I can't be certain that it is sensory related when she puts a lot
> > of thing in her mouth, but just won't swallow. Her GI suggests 3 things: 1)
> > another EGD to rule out the yeast 2) Periactin to help stimulate appetite
> > and hope she goes for solids 3) find a good Behavioral Therapist that deals
> > with feeding issues. I am thinking that maybe we need to do the EGD again.
> > If she still has yeast and it is painful nothing will help...not therapy,
> > not stimulating her appetite, nothing. I am not sure, but I do think the
> > yeast was acute b/c she was on 2 courses of antibiotics just before the 1st
> > EGD. I seriously doubt that she (a very healthy toddler) has a chronic yeast
> > problem, but as her advocate I think it should be ruled out before this is
> > written off as a behavior problem.
> >
> > Any thought or input about the GI's 3 suggestions?
> >
> > Thanks,
> >
> > Betsy (mom to Izzy-14 mo. w/ unidentified feeding difficulties.)
> >
> >
> >
>

We are currently going to OT and ST 2x a week.  The OT seems to be a little
puzzled, b/c sometimes she will eat, but at other times she will not.  Usually
not.  She was also diagnosed with a mild case of dyspraxia.  Initially, our ST
thought that she was unable to move her tongue laterally.  She was able to get
in her mouth and do a tap test and confirmed that she can actually do it.  I
would love to know more about your story though.  We have been struggling w/ the
solids(purees) since she was 5 months old.  She has horrible reflux and it
lasted til she was about 8 months old.  She started out with the purees great,
but that only lasted about 2-3 weeks. Since then it has been an uphill battle. 
She gags and vomit fairly easy, but at other times she can eat perfectly fine. 
We may go for months where she only puts thing in her mouth, chews them and
spits them out - over and over.  Then, for a couple of days she will eat like
there is nothing wrong at all, except there is no vast quantity to her intake. 
I am always ecstatic when she actually eats, so 3-4 bites just makes my day! 
Again though, I would love to know more about your story.

--- In feeding@yahoogroups.com, "julesr475" <julesr475@...> wrote:
>
>
>
> My son is 21 months and we still struggle with solids.  He has been diagnosed
w/ oral and verbal Apraxia.  I have also been told that my son's tongue does not
move laterally, something that is needed to control the food in the mouth and
chew.  My son can do the up/down chew, but only actually chews the food if it
accidentally gets under his teeth.  Unless it's something easy for him to
swallow whole, like pasta, he spits it out because he can't do anything else
with it (it sits on his tongue because he lacks the ability to do anything else
with it).
>
> I would recommend a good feeding therapist (they usually have either a speech
or occupational therapy background).  We have one that comes to our home twice a
week to work on my son's feeding skills and she is amazing.  She is always
telling me that my son's issues are not behavioral - he truly wants to eat but
lacks the ability to coordinate all of the muscles in his mouth to make it work
(the "apraxia" part).  Right now, the bulk of my son's daily nutrition is
several bottles of pediasure throughout the day (the alternative is a feeding
tube) and he has a VERY small handful of soft foods that he eats on a very
inconsistent basis.
>
> I completely understand your frustration.  I would be happy to share more of
my son's issues if interested!
>
>
>
> --- In feeding@yahoogroups.com, "Betsy" <bwintermantel@> wrote:
> >
> > Has anyone ever tried Periactin to help stimulate appetite?  Did you have
any luck with using it?  Did your child experience any side effects?
> >
> > My now 14 mo old is still not eating solids.  Still chewing up food and
spitting it out.  She may swallow 3-4 bites a day.  She readily accepts things
in her mouth, at least most of the time.  Her problem is swallowing them.  She
doesn't even really try to anymore.  She just puts the food in, chews it up and
spits it out...over and over.  Her EGD revealed yeast esophagitis a few weeks
ago.  She completed her course of Diflucan, but there has been no change in
eating.  I am thinking it has either become a learned behavior, due to yeast and
maybe a little sensory related, or this is totally a behavior problem.  I can't
be certain that it is sensory related when she puts a lot of thing in her mouth,
but just won't swallow.  Her GI suggests 3 things:  1) another EGD to rule out
the yeast  2)  Periactin to help stimulate appetite and hope she goes for solids
3) find a good Behavioral Therapist that deals with feeding issues.  I am
thinking that maybe we need to do the EGD again.  If she still has yeast and it
is painful nothing will help...not therapy, not stimulating her appetite,
nothing.  I am not sure, but I do think the yeast was acute b/c she was on 2
courses of antibiotics just before the 1st EGD.  I seriously doubt that she (a
very healthy toddler) has a chronic yeast problem, but as her advocate I think
it should be ruled out before this is written off as a behavior problem.
> >
> > Any thought or input about the GI's 3 suggestions?
> >
> > Thanks,
> >
> > Betsy (mom to Izzy-14 mo. w/ unidentified feeding difficulties.)
> >
>

No, no allergy testing has been done.  I think that we should request it though.
Do they do the skin prick test at this age (14 mo old)?

--- In feeding@yahoogroups.com, diana bishop <dmbaby723@...> wrote:
>
>
> Did an allergist test her to see if she has allergies to foods?  We removed
wheat from our sons diet for a while and it helped.  Our situation was he has
infections due to his tonsils and adnoids behing inflamed all the time.  We had
the removed and now he eats without much fuss; we just have a 3 year old who
never learned to lateralize his tongue or bite into foods.   He bites to the
side and packs a lot.  He has to get comfortable with chewing and swallowing. 
Not swallowing comes from 2 plus years of constent pain when eating
>
>
>
> To: feeding@yahoogroups.com
> From: bwintermantel@...
> Date: Wed, 11 Nov 2009 03:58:56 +0000
> Subject: [feeding] Periactin, EGD, Behavior Therapy - for feeding refusal in
14 mo old
>
>
>
>
>
> Has anyone ever tried Periactin to help stimulate appetite? Did you have any
luck with using it? Did your child experience any side effects?
>
> My now 14 mo old is still not eating solids. Still chewing up food and
spitting it out. She may swallow 3-4 bites a day. She readily accepts things in
her mouth, at least most of the time. Her problem is swallowing them. She
doesn't even really try to anymore. She just puts the food in, chews it up and
spits it out...over and over. Her EGD revealed yeast esophagitis a few weeks
ago. She completed her course of Diflucan, but there has been no change in
eating. I am thinking it has either become a learned behavior, due to yeast and
maybe a little sensory related, or this is totally a behavior problem. I can't
be certain that it is sensory related when she puts a lot of thing in her mouth,
but just won't swallow. Her GI suggests 3 things: 1) another EGD to rule out the
yeast 2) Periactin to help stimulate appetite and hope she goes for solids 3)
find a good Behavioral Therapist that deals with feeding issues. I am thinking
that maybe we need to do the EGD again. If she still has yeast and it is painful
nothing will help...not therapy, not stimulating her appetite, nothing. I am not
sure, but I do think the yeast was acute b/c she was on 2 courses of antibiotics
just before the 1st EGD. I seriously doubt that she (a very healthy toddler) has
a chronic yeast problem, but as her advocate I think it should be ruled out
before this is written off as a behavior problem.
>
> Any thought or input about the GI's 3 suggestions?
>
> Thanks,
>
> Betsy (mom to Izzy-14 mo. w/ unidentified feeding difficulties.)
>
>
>
>
>
> _________________________________________________________________
> Bing brings you maps, menus, and reviews organized in one place.
>
http://www.bing.com/search?q=restaurants&form=MFESRP&publ=WLHMTAG&crea=TEXT_MFES\
RP_Local_MapsMenu_Resturants_1x1
>

I think it was caused by two courses of antibiotics that she was on prior to the
endoscopy.  The GI thinks that it could have been present for sometime (flaring
up and then getting better on and off) and that it was possibly caused by the
reflux meds she was on up until she was 8 months old.  He said that they
(antacids) often create yeast problems.  To make sure that it is gone we must
have another endoscopy, which means that she would be under general anesthesia
again.  I think we need to make sure that it is gone, but at the same time I
hate to have her put to sleep again.  Tough decision...

--- In feeding@yahoogroups.com, "Jennifer Hisrich" <jhisrich@...> wrote:
>
> So what do you think caused so much yeast in the first place.  Unless it is
> really painful to check I'd be sure it is gone before you try anything else.
>
>
>
>
>
> Jennifer Hisrich, mom to Rebecca 9/18/98, 27 weeks, 1 lb. 3 oz.  G-button
> 12/98-10/09, Nissan fundoplication, Missing right cerebellum,  Glasses,
> Chronic lung disease , Allergic to  eggs & mustard,  Outgrown wheat & soy &
> peanuts, Developmental delays, Orthotics,, GEReflux(resolved), started RHGH
> 4/1/04, Lupron, ADD - Vyvanse 50 mg Now 72 lb. and 4 foot 5 1/2 inches tall
>

My son is 21 months and we still struggle with solids.  He has been diagnosed w/
oral and verbal Apraxia.  I have also been told that my son's tongue does not
move laterally, something that is needed to control the food in the mouth and
chew.  My son can do the up/down chew, but only actually chews the food if it
accidentally gets under his teeth.  Unless it's something easy for him to
swallow whole, like pasta, he spits it out because he can't do anything else
with it (it sits on his tongue because he lacks the ability to do anything else
with it).

I would recommend a good feeding therapist (they usually have either a speech or
occupational therapy background).  We have one that comes to our home twice a
week to work on my son's feeding skills and she is amazing.  She is always
telling me that my son's issues are not behavioral - he truly wants to eat but
lacks the ability to coordinate all of the muscles in his mouth to make it work
(the "apraxia" part).  Right now, the bulk of my son's daily nutrition is
several bottles of pediasure throughout the day (the alternative is a feeding
tube) and he has a VERY small handful of soft foods that he eats on a very
inconsistent basis.

I completely understand your frustration.  I would be happy to share more of my
son's issues if interested!



--- In feeding@yahoogroups.com, "Betsy" <bwintermantel@...> wrote:
>
> Has anyone ever tried Periactin to help stimulate appetite?  Did you have any
luck with using it?  Did your child experience any side effects?
>
> My now 14 mo old is still not eating solids.  Still chewing up food and
spitting it out.  She may swallow 3-4 bites a day.  She readily accepts things
in her mouth, at least most of the time.  Her problem is swallowing them.  She
doesn't even really try to anymore.  She just puts the food in, chews it up and
spits it out...over and over.  Her EGD revealed yeast esophagitis a few weeks
ago.  She completed her course of Diflucan, but there has been no change in
eating.  I am thinking it has either become a learned behavior, due to yeast and
maybe a little sensory related, or this is totally a behavior problem.  I can't
be certain that it is sensory related when she puts a lot of thing in her mouth,
but just won't swallow.  Her GI suggests 3 things:  1) another EGD to rule out
the yeast  2)  Periactin to help stimulate appetite and hope she goes for solids
3) find a good Behavioral Therapist that deals with feeding issues.  I am
thinking that maybe we need to do the EGD again.  If she still has yeast and it
is painful nothing will help...not therapy, not stimulating her appetite,
nothing.  I am not sure, but I do think the yeast was acute b/c she was on 2
courses of antibiotics just before the 1st EGD.  I seriously doubt that she (a
very healthy toddler) has a chronic yeast problem, but as her advocate I think
it should be ruled out before this is written off as a behavior problem.
>
> Any thought or input about the GI's 3 suggestions?
>
> Thanks,
>
> Betsy (mom to Izzy-14 mo. w/ unidentified feeding difficulties.)
>

Has anyone ever tried Periactin to help stimulate appetite?  Did you have any
luck with using it?  Did your child experience any side effects?

My now 14 mo old is still not eating solids.  Still chewing up food and spitting
it out.  She may swallow 3-4 bites a day.  She readily accepts things in her
mouth, at least most of the time.  Her problem is swallowing them.  She doesn't
even really try to anymore.  She just puts the food in, chews it up and spits it
out...over and over.  Her EGD revealed yeast esophagitis a few weeks ago.  She
completed her course of Diflucan, but there has been no change in eating.  I am
thinking it has either become a learned behavior, due to yeast and maybe a
little sensory related, or this is totally a behavior problem.  I can't be
certain that it is sensory related when she puts a lot of thing in her mouth,
but just won't swallow.  Her GI suggests 3 things:  1) another EGD to rule out
the yeast  2)  Periactin to help stimulate appetite and hope she goes for solids
3) find a good Behavioral Therapist that deals with feeding issues.  I am
thinking that maybe we need to do the EGD again.  If she still has yeast and it
is painful nothing will help...not therapy, not stimulating her appetite,
nothing.  I am not sure, but I do think the yeast was acute b/c she was on 2
courses of antibiotics just before the 1st EGD.  I seriously doubt that she (a
very healthy toddler) has a chronic yeast problem, but as her advocate I think
it should be ruled out before this is written off as a behavior problem.

Any thought or input about the GI's 3 suggestions?

Thanks,

Betsy (mom to Izzy-14 mo. w/ unidentified feeding difficulties.)