Re: [MAGIC_list] Periactin before GHT

[Guest guest]

Holly - I am , the RSS division consultant. Just as an FYI in case

there is any confusion, the role of the Periactin isn't to actually increase

height, per se (so it isn't to be in place of, etc. the GH). RSS and SGA

children are too thin, and are unable for whatever reasons (metabolism

combined with GI problems) to take in enough calories (most just don't have

good appetites and even those that do can't gain weight). Periactin is an

antihistamine whose side effect is an increased appetite. Dr. Harbison has

written a very comprehensive document detailing complete info on this if you

want it. It is MAGIC library document #127-B.

Anyway, the Periactin helps the RSS/SGA child achieve what we call their

" catch-up growth " PRIOR to starting GH. What we mean by this is that IF the

child's height was being suppressed at all by a caloric insufficiency, then

when the Periactin stimulates the child to eat more, then what you will see is

a sudden weight gain followed by a slight surge in height. Once that height

plateaus again (usually after a couple months or sometimes as long as 6

months), AND if the weight proportion to height was pretty good (probably

above 10-25%'tile), (and of course the child was older than 2 years old, etc).

then it would be the ideal time to start GH. What you might NOT want to do is

start GH and Periactin at the same time (unless the child is older and time is

of essence) because when/if the height surges, it would be difficult to know

if it was due to the caloric repletion or GH (making it difficult to manage

the dosage adjustments).

Also, re PEriactin. The most important thing to know is that if you begin it

(and it is a very benign, short-acting antihistamine), we STRONGLY recommend

several things:

a) the child have no history even as an infant of reflux, because Periactin

does seem to " bring back " reflux

if the child has or had reflux, a simply dose of Zantac combined with the

Periactin usually does the trick quite easily

c) implement the breakfast and dinner doses SLOWLY. FOllOW these steps:

a) Week 1: give 50% of the dinner dose 30-45 minutes before dinner, each

night

Week 2: give 100% of the dinner dose .....

c) Week 3: give 50% of the breakfast dose 30 minutes before breakfast, each

morning, AND continue with the 100% of the dinner dose...

d) Week 4: give 100% of breakfast dose and 100% of dinner dose

If your child has too many tantrums during the day with the Week 3 dose,

simply scale back the amount (try 25%) and move up from there. Most

antihistamines make a child sleepy, and hence, for toddlers and preschoolers

(and elem.) that can result in Dr. Jekyll and Mr. Hyde episodes!!!

This all being said, I will tell you that from my own personal experience and

that of at least 85% of the people I have spoken with who have tried

Periactin, IT WORKS!!! Even if it doesn't appear that your child is eating

much more, give it one month and get your child weighed again on the same

scale. For a 4-year-old, one extra Saltine cracker a day at 11 calories over

one year is one pound!!!

Salem

> Hello.

>

> My name is Holly and we are in the process of

> deciding weather to start with

> GHT or give periactin a try first. I am on

> both the RSS and GHD listserv and

> have been reading several emails. Just taking

> it all in, not responding to

> much at the time because we have nothing to

> compare. I do need some

> information that was posted days ago and I

> accidentally deleted. Do not

> remember if it was on this site or the RSS but

> I have added it the both.

> Someone wrote in the regimen that Dr. H had

> given them and it went something

> like.....start periactin at 2/3yrs for the

> first months/year then onto GHT.

> If anyone can be of any help this is for our

> doctors office to give Sadie a

> try on periactin before starting GH. I talked

> with our nurse and told her

> that I had read an email about a child taking

> periactin before GH and most of

> the time both together. Also explained that

> Dr. H was very well know among

> the RSS families.

>

> Thanks for any of the help.

>

> Holly

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

[Guest guest]

Holly - I am , the RSS division consultant. Just as an FYI in case

there is any confusion, the role of the Periactin isn't to actually increase

height, per se (so it isn't to be in place of, etc. the GH). RSS and SGA

children are too thin, and are unable for whatever reasons (metabolism

combined with GI problems) to take in enough calories (most just don't have

good appetites and even those that do can't gain weight). Periactin is an

antihistamine whose side effect is an increased appetite. Dr. Harbison has

written a very comprehensive document detailing complete info on this if you

want it. It is MAGIC library document #127-B.

Anyway, the Periactin helps the RSS/SGA child achieve what we call their

" catch-up growth " PRIOR to starting GH. What we mean by this is that IF the

child's height was being suppressed at all by a caloric insufficiency, then

when the Periactin stimulates the child to eat more, then what you will see is

a sudden weight gain followed by a slight surge in height. Once that height

plateaus again (usually after a couple months or sometimes as long as 6

months), AND if the weight proportion to height was pretty good (probably

above 10-25%'tile), (and of course the child was older than 2 years old, etc).

then it would be the ideal time to start GH. What you might NOT want to do is

start GH and Periactin at the same time (unless the child is older and time is

of essence) because when/if the height surges, it would be difficult to know

if it was due to the caloric repletion or GH (making it difficult to manage

the dosage adjustments).

Also, re PEriactin. The most important thing to know is that if you begin it

(and it is a very benign, short-acting antihistamine), we STRONGLY recommend

several things:

a) the child have no history even as an infant of reflux, because Periactin

does seem to " bring back " reflux

if the child has or had reflux, a simply dose of Zantac combined with the

Periactin usually does the trick quite easily

c) implement the breakfast and dinner doses SLOWLY. FOllOW these steps:

a) Week 1: give 50% of the dinner dose 30-45 minutes before dinner, each

night

Week 2: give 100% of the dinner dose .....

c) Week 3: give 50% of the breakfast dose 30 minutes before breakfast, each

morning, AND continue with the 100% of the dinner dose...

d) Week 4: give 100% of breakfast dose and 100% of dinner dose

If your child has too many tantrums during the day with the Week 3 dose,

simply scale back the amount (try 25%) and move up from there. Most

antihistamines make a child sleepy, and hence, for toddlers and preschoolers

(and elem.) that can result in Dr. Jekyll and Mr. Hyde episodes!!!

This all being said, I will tell you that from my own personal experience and

that of at least 85% of the people I have spoken with who have tried

Periactin, IT WORKS!!! Even if it doesn't appear that your child is eating

much more, give it one month and get your child weighed again on the same

scale. For a 4-year-old, one extra Saltine cracker a day at 11 calories over

one year is one pound!!!

Salem

> Hello.

>

> My name is Holly and we are in the process of

> deciding weather to start with

> GHT or give periactin a try first. I am on

> both the RSS and GHD listserv and

> have been reading several emails. Just taking

> it all in, not responding to

> much at the time because we have nothing to

> compare. I do need some

> information that was posted days ago and I

> accidentally deleted. Do not

> remember if it was on this site or the RSS but

> I have added it the both.

> Someone wrote in the regimen that Dr. H had

> given them and it went something

> like.....start periactin at 2/3yrs for the

> first months/year then onto GHT.

> If anyone can be of any help this is for our

> doctors office to give Sadie a

> try on periactin before starting GH. I talked

> with our nurse and told her

> that I had read an email about a child taking

> periactin before GH and most of

> the time both together. Also explained that

> Dr. H was very well know among

> the RSS families.

>

> Thanks for any of the help.

>

> Holly

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

[Guest guest]

Thanks for the wonderful information. I do realize that periactin will not

give Sadie height but there has not been a specific dx for her so I thought

we would go the route of trying periactin for her weight and as you said see

if it helps her height any. Her father was 4 " 11 until his sophomore year of

high school so it just makes me wonder a lot.

Thanks again.

Holly

[Guest guest]

The doctors have never mentioned CGD. Sadie has been tested for RSS which

came out negative but the genetics doctors was sticking with that due to her

IUGR/SGA, her current weight, fontanel opening not closed and her fifth

finger only having one crease. Sadie has also been tested for

Syndrome and s Syndrome both which came back fine. All the blood work

done on Sadie has been normal.

It might help if I fill you in on Sadie a little more. She was born at

35weeks by c-section due to IUGR and decrease in the amniotic fluid. Sadie

weighed 3#9oz, 16inches long. She was on c-pap for 4 days then stayed in the

NICU for two weeks onto the special care nursery for another week. On the

fifth day Sadie was dx with a PDA and a VSD. The PDA was closed with

medication while the VSD required surgery at 3months old. Sadie's heart is

doing great now and we do not go back to see the cardiologist for 3years. On

the other hand she DOES NOT eat. She is still on formula/peidasure and only

takes about 10-13oz a day. Sadie does continue to gain weight but slowly.

She is now at 16#, 27 1/2inches. Sadie will be 2 the end of November. We

had also seen a GI doc and nothing came of that, all turned out OK.

It almost feels like I am just in the blue. Every test we do is normal.

That is why it is so confusing and frustrating as " WHAT TO DO. " As of now i

believe we are going to try and see how periactin works with her then in time

go on GHT if that is still what she needs.

Thanks Again.

Holly

[Guest guest]

Holly - I think you are on the right track!!! Especially if your

husband has such significant constitutional growth delay!!! Does

your daughter's doctor think that she might just be constitutionally

growth delayed like your husband?

> Thanks for the wonderful information. I do realize that periactin

will not

> give Sadie height but there has not been a specific dx for her so I

thought

> we would go the route of trying periactin for her weight and as you

said see

> if it helps her height any. Her father was 4 " 11 until his

sophomore year of

> high school so it just makes me wonder a lot.

>

> Thanks again.

>

> Holly

>

>

>

[Guest guest]

Hi Holly,

I know how difficult it is to be without a diagnosis...I am curious, though.

you said that Sadie had been tested for RSS, but " came out negative " . There

really is no test for RSS. RSS is diagnosed by multidisciplinary approach:

looking at the constellation of behaviors, growth factor levels, medical

history and the look of the child. (www.magicfoundation.org lists the

characteristics). There is a genetic test that looks fore uniparental

disomy of chromosome #7, which basically means the Mom gave the child both

chromsome 7s, instead of one from Mom, one from Dad. But, even if the test

comes out negative, meaning that a child is getting a chromosome from each

parent, the child could still have RSS. Only 10% or so of RSS children

show the UPD.

For some RSS kids, the diagnosis is obvious, for others, it seems to rely on

a very insightful ped endo or geneticist who just " sees " what other doctors

can't..

I do have an important question for you: Does Sadie sweat during the night?

The nighttime sweating can be a sign of hypoglycemia, and this is far more

critical than height or weight gain...It needs to be agressively treated

with frequent feeds and caloric intake. Untreated hypoglycemia under the

age of 3 can lead to learning disabilities. so, you're doing the right

thing by focusing on her eating right now!

Katy

Re: Re: [MAGIC_list] Periactin before GHT

> The doctors have never mentioned CGD. Sadie has been tested for RSS which

> came out negative but the genetics doctors was sticking with that due to

her

> IUGR/SGA, her current weight, fontanel opening not closed and her fifth

> finger only having one crease. Sadie has also been tested for

> Syndrome and s Syndrome both which came back fine. All the blood

work

> done on Sadie has been normal.

>

> It might help if I fill you in on Sadie a little more. She was born at

> 35weeks by c-section due to IUGR and decrease in the amniotic fluid.

Sadie

> weighed 3#9oz, 16inches long. She was on c-pap for 4 days then stayed in

the

> NICU for two weeks onto the special care nursery for another week. On the

> fifth day Sadie was dx with a PDA and a VSD. The PDA was closed with

> medication while the VSD required surgery at 3months old. Sadie's heart

is

> doing great now and we do not go back to see the cardiologist for 3years.

On

> the other hand she DOES NOT eat. She is still on formula/peidasure and

only

> takes about 10-13oz a day. Sadie does continue to gain weight but slowly.

> She is now at 16#, 27 1/2inches. Sadie will be 2 the end of November. We

> had also seen a GI doc and nothing came of that, all turned out OK.

>

> It almost feels like I am just in the blue. Every test we do is normal.

> That is why it is so confusing and frustrating as " WHAT TO DO. " As of now

i

> believe we are going to try and see how periactin works with her then in

time

> go on GHT if that is still what she needs.

>

> Thanks Again.

>

> Holly

>

>

>

[Guest guest]

Hello Katy,

The answer to your question is yes and no. there are times that is sweats

and others times that she does not. She will usually sweat if have fallen

asleep in her carseat. Sadie has had her blood levels tested several times

and all were fine. One time it did come back low but the GI doc had it

redone stat and came back OK.

With your concern to hypoglycemia do you think maybe we should have her blood

drawn again to be sure?

Thanks for the info. on RSS. I did know that the test is not 100% accurate.

Our genetics doctors explained it exactly as you did.

Holly

[Guest guest]

Katy,

I'll be sure to ask the doctor about it at her two year check up in Nov. to

see what he thinks.

Thanks Again.

Holly

[Guest guest]

hi Holly,

I don't know about the blood tests.. (no reason to put her through more

pricks!) but, at least keep an eye out for it..prevention is the best cure,

so if you can, try to feed her frequently. I mention it because I've been

learning that some doctors concentrate so much on the height/weight they

don't ask the simple question about the night sweats!

Katy

Re: Re: [MAGIC_list] Periactin before GHT

> Hello Katy,

>

> The answer to your question is yes and no. there are times that is sweats

> and others times that she does not. She will usually sweat if have fallen

> asleep in her carseat. Sadie has had her blood levels tested several

times

> and all were fine. One time it did come back low but the GI doc had it

> redone stat and came back OK.

>

> With your concern to hypoglycemia do you think maybe we should have her

blood

> drawn again to be sure?

>

> Thanks for the info. on RSS. I did know that the test is not 100%

accurate.

> Our genetics doctors explained it exactly as you did.

>

> Holly

>

>

>