Re: Periactin not working anymore?

[Guest guest]

Sorry, I guess I should have read both of your messages before

answering. I'm not sure what to tell you about his periactin not

working. Coby has always eaten a lot, whether on periactin or not.

However, while he was on the periactin he was having horrible temper

tantrums. I have very loving kids and they are well behaved overall,

but Coby would go into these rages. I have never seen a baby so

angry before. It was nothing for him to slap me across the face when

he was mad. I was becoming very concerned and even addressed the

issue with his geneticists and his developmental therapist. His

geneticist wanted to see how it went and his dt thought that it may

have something to do with his speech delay and not being about to

communicate his emotions. When we took him off periactin his moods

changed completely. He still occasionally has a tantrum, but he

never tries to hit me. It has made a world of difference. We were

lucky that Coby didn't need the periactin anymore.

Good luck...le

[Guest guest]

I just have to chime in here. We are currently in a Periactin

holiday around here. Matt was really complaining about his reflux

and since the periactin can make it worse, I am on holiday. But I

haven't really seen any difference. We'll see. The big problem is

that you have to ramp it back up so I'll probably do that during the

Christmas break.

I LOVE periactin and it has put a bunch of weight on Matt, just

wanted a little break.

Beth

>

> Hi,

>

> I haven't posted in awhile. Life is crazy right now! My healthy

DD,

> Hayden, is going to have surgery to remove tonsils, adenoids and

get

> ear tubes placed and my other son, Grant, who is 10 months old

gets

> up at 5am every morning. I'm exhausted!

>

> Colin is doing okay. After seeing Dr. H in July and raising the

> periactin dose he gained 2lbs. immediately. Now he is back to not

> eating much again and I'm not sure why because we recently cut his

> daytime bolus amounts by 4 oz. He is very irritable and having

lots

> of temper tantrums that I'm sure are blood sugar related. I've

tried

> increasing the periactin a little bit since he has gained weight,

> but it doesn't seem to be working. I'm not sure what to do next

and

> would love some feedback! It is very discouraging after seeing him

> eat generous amounts of food to go back to him eating a few bites

a

> day, especially when he isn't sick and I don't see signs of

reflux.

>

> I hope everyone is doing well!

>

> Thanks,

>

> Colin (RSS, g-tube) and Hayden - 46 mo. twins

> Grant - 9 mo.

[Guest guest]

hi emily!!

i have had this same problem with christopher lately!! he gained

3lbs after starting periactin in april, dr h upped it in july and he

only gained a little bit. we just saw her 2weeks ago and she upped

it again. we are also just trying to up his calories in what ever

he eats. this has been very frustrating for me as well, since like

you said he did so well when first put on the periactin. good luck

to hayden during and after his surgery!! give him plenty of ice

cream!!! and hopefully grant will sleep later once the time

changes!!! good luck and ((HUGS)) to you!!

jodie c.

>

> Hi,

>

> I haven't posted in awhile. Life is crazy right now! My healthy

DD,

> Hayden, is going to have surgery to remove tonsils, adenoids and

get

> ear tubes placed and my other son, Grant, who is 10 months old

gets

> up at 5am every morning. I'm exhausted!

>

> Colin is doing okay. After seeing Dr. H in July and raising the

> periactin dose he gained 2lbs. immediately. Now he is back to not

> eating much again and I'm not sure why because we recently cut his

> daytime bolus amounts by 4 oz. He is very irritable and having

lots

> of temper tantrums that I'm sure are blood sugar related. I've

tried

> increasing the periactin a little bit since he has gained weight,

> but it doesn't seem to be working. I'm not sure what to do next

and

> would love some feedback! It is very discouraging after seeing him

> eat generous amounts of food to go back to him eating a few bites

a

> day, especially when he isn't sick and I don't see signs of

reflux.

>

> I hope everyone is doing well!

>

> Thanks,

>

> Colin (RSS, g-tube) and Hayden - 46 mo. twins

> Grant - 9 mo.

[Guest guest]

Hi Jodie,

So what kind of dose is on now? Dr. H increased it to

4.6ccs/twice a day back in July and I've moved it up to 5ccs. I know

she told us that 4.6 was the MINIMUM and we could go higher. I just

wish I had a doctor here who was familiar with it. Colin is about

15.4 kg right now.

Thanks,

> >

> > Hi,

> >

> > I haven't posted in awhile. Life is crazy right now! My healthy

> DD,

> > Hayden, is going to have surgery to remove tonsils, adenoids and

> get

> > ear tubes placed and my other son, Grant, who is 10 months old

> gets

> > up at 5am every morning. I'm exhausted!

> >

> > Colin is doing okay. After seeing Dr. H in July and raising the

> > periactin dose he gained 2lbs. immediately. Now he is back to

not

> > eating much again and I'm not sure why because we recently cut

his

> > daytime bolus amounts by 4 oz. He is very irritable and having

> lots

> > of temper tantrums that I'm sure are blood sugar related. I've

> tried

> > increasing the periactin a little bit since he has gained

weight,

> > but it doesn't seem to be working. I'm not sure what to do next

> and

> > would love some feedback! It is very discouraging after seeing

him

> > eat generous amounts of food to go back to him eating a few

bites

> a

> > day, especially when he isn't sick and I don't see signs of

> reflux.

> >

> > I hope everyone is doing well!

> >

> > Thanks,

> >

> > Colin (RSS, g-tube) and Hayden - 46 mo. twins

> > Grant - 9 mo.

[Guest guest]

Maybe this is what we need to do? It is so hard when none of Colin's

doctors are familiar with periactin so I have no one to guide us.

Dr. H is usually good about working with our team, but they haven't

had much luck getting in touch with her since August. Let me know if

you notice a difference without it!

I saw the picture from the walk! That is so cool that you raised

over $1200. WTG!

Thanks,

> >

> > Hi,

> >

> > I haven't posted in awhile. Life is crazy right now! My healthy

> DD,

> > Hayden, is going to have surgery to remove tonsils, adenoids and

> get

> > ear tubes placed and my other son, Grant, who is 10 months old

> gets

> > up at 5am every morning. I'm exhausted!

> >

> > Colin is doing okay. After seeing Dr. H in July and raising the

> > periactin dose he gained 2lbs. immediately. Now he is back to

not

> > eating much again and I'm not sure why because we recently cut

his

> > daytime bolus amounts by 4 oz. He is very irritable and having

> lots

> > of temper tantrums that I'm sure are blood sugar related. I've

> tried

> > increasing the periactin a little bit since he has gained

weight,

> > but it doesn't seem to be working. I'm not sure what to do next

> and

> > would love some feedback! It is very discouraging after seeing

him

> > eat generous amounts of food to go back to him eating a few

bites

> a

> > day, especially when he isn't sick and I don't see signs of

> reflux.

> >

> > I hope everyone is doing well!

> >

> > Thanks,

> >

> > Colin (RSS, g-tube) and Hayden - 46 mo. twins

> > Grant - 9 mo.

[Guest guest]

I am so sorry you are dealing with so much on exhaustion! Re the

Periactin. Indeed, it could be that the dose isn't appropriate for

his weight. It also could be normal 3-5 year old eating. One week

they eat a ton, another time they eat nothing. One dinner my 7-year-

old son will eat 3 pieces of pizza, the next he eats 1/2 piece and

nothing else. I would monitor his weight and if you see a DROP then

worry. We don't personally own a scale in our house, because I knew

I would weigh too much, and we decided to not make it

a " big " deal, but we do drop by the pediatrician's office for a

weight check about every 2 weeks, whenever we happen to be near

there. Maybe you can try that option? Good luck, and let us know

how it keeps going. Jenn

>

> Hi,

>

> I haven't posted in awhile. Life is crazy right now! My healthy

DD,

> Hayden, is going to have surgery to remove tonsils, adenoids and

get

> ear tubes placed and my other son, Grant, who is 10 months old

gets

> up at 5am every morning. I'm exhausted!

>

> Colin is doing okay. After seeing Dr. H in July and raising the

> periactin dose he gained 2lbs. immediately. Now he is back to not

> eating much again and I'm not sure why because we recently cut his

> daytime bolus amounts by 4 oz. He is very irritable and having

lots

> of temper tantrums that I'm sure are blood sugar related. I've

tried

> increasing the periactin a little bit since he has gained weight,

> but it doesn't seem to be working. I'm not sure what to do next

and

> would love some feedback! It is very discouraging after seeing him

> eat generous amounts of food to go back to him eating a few bites

a

> day, especially when he isn't sick and I don't see signs of

reflux.

>

> I hope everyone is doing well!

>

> Thanks,

>

> Colin (RSS, g-tube) and Hayden - 46 mo. twins

> Grant - 9 mo.

[Guest guest]

hi emily!!

christopher was getting 3.4cc/2x a day in april, she increased it to

3.6cc/2x a day in july, and she has now increased it to 4cc/2 x a

day. he is 25lbs 13oz or 11.69kg and 92.2cm or 36.3 " . maybe your

ped could contact dr h and see what to up it to or your endo. it

sounds like it needs to be adjusted for his weight. good luck!!!

jodie c.

> > >

> > > Hi,

> > >

> > > I haven't posted in awhile. Life is crazy right now! My

healthy

> > DD,

> > > Hayden, is going to have surgery to remove tonsils, adenoids

and

> > get

> > > ear tubes placed and my other son, Grant, who is 10 months old

> > gets

> > > up at 5am every morning. I'm exhausted!

> > >

> > > Colin is doing okay. After seeing Dr. H in July and raising

the

> > > periactin dose he gained 2lbs. immediately. Now he is back to

> not

> > > eating much again and I'm not sure why because we recently cut

> his

> > > daytime bolus amounts by 4 oz. He is very irritable and having

> > lots

> > > of temper tantrums that I'm sure are blood sugar related. I've

> > tried

> > > increasing the periactin a little bit since he has gained

> weight,

> > > but it doesn't seem to be working. I'm not sure what to do

next

> > and

> > > would love some feedback! It is very discouraging after seeing

> him

> > > eat generous amounts of food to go back to him eating a few

> bites

> > a

> > > day, especially when he isn't sick and I don't see signs of

> > reflux.

> > >

> > > I hope everyone is doing well!

> > >

> > > Thanks,

> > >

> > > Colin (RSS, g-tube) and Hayden - 46 mo. twins

> > > Grant - 9 mo.

[Guest guest]

Hi ,

It could just be a normal eating cycle. My son does that. One week he

eats like a pig and then the next week or 2 he eats practically

nothing. However, he keeps gaining weight.

Also keep in mind that periactin's affects are subtle. Often when you

first start it or increase it there is a big spike in eating. Then it

tapers off and appears to not be working. If you measure his calories

(3 days minimum), then stop the periactin you will see a drop of

about 50 to 100 calories a day, sometimes more. So what periactin is

really doing is raising the average daily intake. Over a year this

translates into an extra 4 or 5 pounds. You don't want to put weight

on too quickly, this is not healthy.

I hope this helps.

Ken M

>

> Hi,

>

> I haven't posted in awhile. Life is crazy right now! My healthy DD,

> Hayden, is going to have surgery to remove tonsils, adenoids and

get

> ear tubes placed and my other son, Grant, who is 10 months old gets

> up at 5am every morning. I'm exhausted!

>

> Colin is doing okay. After seeing Dr. H in July and raising the

> periactin dose he gained 2lbs. immediately. Now he is back to not

> eating much again and I'm not sure why because we recently cut his

> daytime bolus amounts by 4 oz. He is very irritable and having lots

> of temper tantrums that I'm sure are blood sugar related. I've

tried

> increasing the periactin a little bit since he has gained weight,

> but it doesn't seem to be working. I'm not sure what to do next and

> would love some feedback! It is very discouraging after seeing him

> eat generous amounts of food to go back to him eating a few bites a

> day, especially when he isn't sick and I don't see signs of reflux.

>

> I hope everyone is doing well!

>

> Thanks,

>

> Colin (RSS, g-tube) and Hayden - 46 mo. twins

> Grant - 9 mo.