Re: Question on when to start periactin w/ a tube fed child (m)

[Guest guest]

,

We started Max on solid foods just as you are doing. Colin is too

young at 14 months to use that medication. We tried Max at 17

months and he walked around like a drunken sailor. I would think

that waiting the 4-6 months while the OT works on sensory issues is

plenty of time. As long as he is showing interest in food, let it

be pleasurable. If you push Periactin, then you are going to feel

like he should eat more by mouth and then you will feel pressure to

get him to take more and more. Wait until he is a little older. I

promise you he will eat by mouth someday. It may not seem like it,

but it will happen. You are lucky in one respect - Colin has Hayden

to observe and try to copy.

Jodi

> Colin is 14 mo. old and still is 100% tube fed, but making great

> progress on his interest in foods and putting things in his mouth.

> The feeding clinic doesn't have great success with periactin and

> doesn't usually recommend it, but is willing to give it a try for

> Colin. They want to wait another 4-6 months however because they

are

> concerned he wouldn't know what to do with actual " hunger " and

would

> become extremely cranky. Colin has sensory issues and they feel he

> need to work through some of these before we give it a try.

Insurance

> has approved weekly visits for OT and we're just on the waiting

list.

> He does receive therapy from EI once a month (not nearly enough

> therapy).

>

> I was hoping some of you with tube fed kids could share with me

your

> progression to eating real food and if you had success with

> periactin, when you started, etc.

>

> Colin is in the process of switching from enfamil formula to

> pediasure. So far so good and it has even reduced his reflux. Not

to

> jinx anything, but he hasn't vomited in a few weeks now. I'm not

sure

> if he is just outgrowing it, or if it is due to the pediasure. But

it

> sure makes life easier on me!

>

> Thanks for your input,

>

> Colin & Hayden - 14 mo. twins

[Guest guest]

> Colin is 14 mo. old and still is 100% tube fed, but making great

> progress on his interest in foods and putting things in his mouth.

> The feeding clinic doesn't have great success with periactin and

> doesn't usually recommend it, but is willing to give it a try for

> Colin. They want to wait another 4-6 months however because they

are

> concerned he wouldn't know what to do with actual " hunger " and

would

> become extremely cranky. Colin has sensory issues and they feel he

> need to work through some of these before we give it a try.

Insurance

> has approved weekly visits for OT and we're just on the waiting

list.

> He does receive therapy from EI once a month (not nearly enough

> therapy).

>

> I was hoping some of you with tube fed kids could share with me

your

> progression to eating real food and if you had success with

> periactin, when you started, etc.

>

> Colin is in the process of switching from enfamil formula to

> pediasure. So far so good and it has even reduced his reflux. Not

to

> jinx anything, but he hasn't vomited in a few weeks now. I'm not

sure

> if he is just outgrowing it, or if it is due to the pediasure. But

it

> sure makes life easier on me!

>

> Thanks for your input,

>

> Colin & Hayden - 14 mo. twins

,

My daughter, Raven is 15 mo. and we are pretty much in the same

situation regarding the feeding issues. I'm sorry to say that I have

no advice on Peractin, but I can tell you that she also is showing

great intrest in foods lately. Something just clicked with her, and

all of a sudden she understands what we want her to do (and does

it!) If Colin is putting things in his mouth, I'm sure he will be

eating soon. Raven started to willingly put things in her mouth

around 13 mo., and has not stopped since. We were sure to continue

with plenty of oral stimulation, and the eating came soon after that

break through.

I'm also interested to read that you changed his formula to

pediasure. Was that a suggestion from your doctor, or did you just

try it on your own? Raven still has horriable reflux, and we are

trying to find a solution. Hope all goes well,

DM

[Guest guest]

> > > Colin is 14 mo. old and still is 100% tube fed, but making

great

> > > progress on his interest in foods and putting things in his

> mouth.

> > > The feeding clinic doesn't have great success with periactin

and

> > > doesn't usually recommend it, but is willing to give it a try

for

> > > Colin. They want to wait another 4-6 months however because

they

> > are

> > > concerned he wouldn't know what to do with actual " hunger " and

> > would

> > > become extremely cranky. Colin has sensory issues and they feel

> he

> > > need to work through some of these before we give it a try.

> > Insurance

> > > has approved weekly visits for OT and we're just on the waiting

> > list.

> > > He does receive therapy from EI once a month (not nearly enough

> > > therapy).

> > >

> > > I was hoping some of you with tube fed kids could share with me

> > your

> > > progression to eating real food and if you had success with

> > > periactin, when you started, etc.

> > >

> > > Colin is in the process of switching from enfamil formula to

> > > pediasure. So far so good and it has even reduced his reflux.

Not

> > to

> > > jinx anything, but he hasn't vomited in a few weeks now. I'm

not

> > sure

> > > if he is just outgrowing it, or if it is due to the pediasure.

> But

> > it

> > > sure makes life easier on me!

> > >

> > > Thanks for your input,

> > >

> > > Colin & Hayden - 14 mo. twins

> >

> >

Hello ,

Raven takes .6 ccs., of Reglan three times a day. I am very

encouraged with the news of the Pediasure. Raven's formula (NeoSure

w/ iron) is concentrated to a 27 calorie per ounce mix. I will see

her doctor on the 14th of this month. I will definately mention it.

It has also been brought to my attention by her therapist that papaya

seems to help with reflux in some children. Anything is worth a try.

Thank you for the advice. Please let me know when Colin starts to

eat .

DM

> >

[Guest guest]

,

Jake also has/had reflux, but since he began pediasure, has not had a

problem. He has been on Zantac for his reflux since he was a month

old and it is constant debate in our home about whether or not to

keep him on it. Dr. H says to keep him on it, so for now he still

takes it.

Regarding Periactin, Jake has been on it since he was 13 months old.

Dr. H prescribed it. Honestly I don't think it increases his

appetite much (if at all), but he is gaining weight at a good rate.

My husband thinks it helps his appetite, so again a little

controversial in our home. At this point he is growing very nicely

so I don't want to change anything. He weighed 11 1/2 pounds when he

started Periactin and now (with the additional help of a feeding tube

placed in August) he weighs almost 20 pounds at 2 years old. Jake

tube feeds primarily at night, and mostly drinks milk/pediasure

during the day. He eats some solids (ie. crackers, pretzels,

cheerios) but not enough to keep him going. But, I feel it is

important for him to chew and eat " normally " so I give him whatever

he'll eat. I truly believe it is the extra calories that he gets

through the feeding tube that has helped his weight increase, rather

than the Periactin.

Good luck!

Alison (Jake, RSS, 2 years old)

> Colin is 14 mo. old and still is 100% tube fed, but making great

> progress on his interest in foods and putting things in his mouth.

> The feeding clinic doesn't have great success with periactin and

> doesn't usually recommend it, but is willing to give it a try for

> Colin. They want to wait another 4-6 months however because they

are

> concerned he wouldn't know what to do with actual " hunger " and

would

> become extremely cranky. Colin has sensory issues and they feel he

> need to work through some of these before we give it a try.

Insurance

> has approved weekly visits for OT and we're just on the waiting

list.

> He does receive therapy from EI once a month (not nearly enough

> therapy).

>

> I was hoping some of you with tube fed kids could share with me

your

> progression to eating real food and if you had success with

> periactin, when you started, etc.

>

> Colin is in the process of switching from enfamil formula to

> pediasure. So far so good and it has even reduced his reflux. Not

to

> jinx anything, but he hasn't vomited in a few weeks now. I'm not

sure

> if he is just outgrowing it, or if it is due to the pediasure. But

it

> sure makes life easier on me!

>

> Thanks for your input,

>

> Colin & Hayden - 14 mo. twins

[Guest guest]

I can't wait to see what other people wrote (I am way behind in

postings). I would say wait as well. Let him develop his own

sensory ideas about food (for normal 14 month olds as well). Plenty

of time to increase his appetite. I hope I am not way off base

here. As for the medical people not having good experience with

Periactin, the doctors we have seen (not Dr. H but others) that have

used Periactin with other kids and then used it on an RSS or SGA kid,

have been amazed at the difference. For some reason, it seems to

work well with RSS kids and not necessarily with other kids. Why????

> Colin is 14 mo. old and still is 100% tube fed, but making great

> progress on his interest in foods and putting things in his mouth.

> The feeding clinic doesn't have great success with periactin and

> doesn't usually recommend it, but is willing to give it a try for

> Colin. They want to wait another 4-6 months however because they

are

> concerned he wouldn't know what to do with actual " hunger " and

would

> become extremely cranky. Colin has sensory issues and they feel he

> need to work through some of these before we give it a try.

Insurance

> has approved weekly visits for OT and we're just on the waiting

list.

> He does receive therapy from EI once a month (not nearly enough

> therapy).

>

> I was hoping some of you with tube fed kids could share with me

your

> progression to eating real food and if you had success with

> periactin, when you started, etc.

>

> Colin is in the process of switching from enfamil formula to

> pediasure. So far so good and it has even reduced his reflux. Not

to

> jinx anything, but he hasn't vomited in a few weeks now. I'm not

sure

> if he is just outgrowing it, or if it is due to the pediasure. But

it

> sure makes life easier on me!

>

> Thanks for your input,

>

> Colin & Hayden - 14 mo. twins