Re: Trouble in school

[Guest guest]

Hi Ken,

I wish I had some wonderful advice for you. Here are a couple of

questions:

1. Have you seen the pediatrician? Maybe some blood work is in

order to see if something nonRSS related is going on.

2. Is he on the correct periactin dosage?

3. Did someone double him up on medication by accident? One of the

idiot doctors from my peditrician's team didn't listen when I said

was on periactin and prescribed an antihistimine for something

else. Needless to say, this was a disaster.

Good luck and keep us updated.

Judith, Steve, (RSS) and (non RSS) almost 4 yr old twins

[Guest guest]

Hmmm.... well, the boy you described sounds almost exactly like my 6

3/4 year old son Tyler, who is non-RSS. Tyler sleeps from 7:30am to

7:30am and runs hard all day long. If I drove him in the car in the

afternoon, he would undoubtedly fall asleep. He can not make a

decision to save himself. The teacher told us that it is impacting

his writing because he can't decide what to write about. Choosing

clothes to wear is a nightmare as well. Our psychologist is helping

us help him by reminding him that there is no right or wrong reason

(she says these kids are often gifted, and are often very strong in

math and spatial/analytical stuff).

Now I think Tyler's fatigue (his sister doesn't sleep as much) is

related to the fact that not only does he play hard, but " life " is

exhausting to him. He is constantly aware of everything -- very

anxious boy, very concerned with doing everything " right " , etc.

Sleep is his haven from having to be perfect. I don't know if this

sounds like at all.

Now that being said, any antihistamine can also cause drowsiness,

although usually it is only in the first few days of the new

dosage. So I am not sure if this could be a predictor. One thing

you could try is for a week or two, cut back his morning dosage of

cyproheptadine in 1/2 (keeping the bedtime one since it is short

acting, only 6 hours or so, and thus would be out of his system

during the nighttime sleep). See what happens to him during the day

if this helps at all.

The other possibility, since I don't know your snack routine at

school, is caloric intake. Don't laugh, since it sounds like he is

gaining! When doesn't eat enough complex carbos/proteins

every 90 minutes or so, you can literally see her become lethargic.

In first grade, when it was the worst, she would literally lay her

head down on the desk and become a vegetable. Her teacher would

pull out a can of apple juice and she would perk right up and be

fine after that. If we tested her BSL, she would be in the normal

range, but low normal. From stuff I have read, and this is just

theoretical, the RSS kids are more prone to sudden DROPS in the

Blood sugar levels (BSL). Does he have a scheduled snack routine at

school, or is he allowed to do what did in 1st grade (and

now) with the bag of zip lock snacks on the top of her desk and she

eats what she wants.

Let me know your thoughts! S.

> Hi everyone,

>

> I need a little advice.

>

> First an update. My son has RSS. He is 6 3/4. He is on

growth

> hormone and periactin. No feeding tube. Last May his growth

hormone

> was increased again and he was put back on periactin. The results

> have bee dramatic.

> Since then he has grown almost 3 inches and put on almost 6

pounds.

> In the 2 years before May, his weight was 29 +/- .5 pounds and his

he

> grew barely an inch.

>

> Now we are having some trouble in school. It seems is tired

> quite a bit and often rests in school. He sleeps almost 14 hours a

> night. He is in bed and asleep by 6 pm and doesn't get up until

> almost 8 am. Around 6 pm he oftens asks to go to sleep because he

is

> too tired. While in school the teachers are complaining that he

> cannot get his work done. He takes forever to make decisions and

> complete assignments. Specifically, when asked to write 2

sentences,

> he takes almost 1/2 hour to think of 2 things to write. In math,

> however, he is ahead of his classmates.

>

> He is also having some reading trouble and is getting extra help

> there but he is only slightly below grade level.

>

> So, we are wondering what is up. Why does he seem so tired, why

can't

> he think of things to write? Why is decesion making such a hard

> thing? Could this be something medical.

>

> In the meantime, we have asked for another IEP meeting to possible

> get him an aid and to discuss some other issues like not being

> allowed in the school to observe our son. DON'T ask !. I'm likely

to

> start throwing my computer around ( again ).

>

> While all this is going on, I recently started a new job in

land.

> The problem is, I live in New Hampshire. So I am only home on

> weekends. It is being very hard on my wife and me. By the way,

anyone

> in land want to rent me a room?

>

>

> Any suugestions or advice would be appreciated.

>

> Thanks

>

> Ken M

>

[Guest guest]

Ken,

We had the same problem with when he was on Periactin: he was very tired

at

school, and slow to do his work. So we stopped his morning Periactin dosage.

He ate

well in the morning anyway after we stopped his overnight tube feedings. This

seemed to help his energy level at school.

- Joe

> Hi everyone,

>

> I need a little advice.

>

> First an update. My son has RSS. He is 6 3/4. He is on growth

> hormone and periactin. No feeding tube. Last May his growth hormone

> was increased again and he was put back on periactin. The results

> have bee dramatic.

> Since then he has grown almost 3 inches and put on almost 6 pounds.

> In the 2 years before May, his weight was 29 +/- .5 pounds and his he

> grew barely an inch.

>

> Now we are having some trouble in school. It seems is tired

> quite a bit and often rests in school. He sleeps almost 14 hours a

> night. He is in bed and asleep by 6 pm and doesn't get up until

> almost 8 am. Around 6 pm he oftens asks to go to sleep because he is

> too tired. While in school the teachers are complaining that he

> cannot get his work done. He takes forever to make decisions and

> complete assignments. Specifically, when asked to write 2 sentences,

> he takes almost 1/2 hour to think of 2 things to write. In math,

> however, he is ahead of his classmates.

>

> He is also having some reading trouble and is getting extra help

> there but he is only slightly below grade level.

>

> So, we are wondering what is up. Why does he seem so tired, why can't

> he think of things to write? Why is decesion making such a hard

> thing? Could this be something medical.

>

> In the meantime, we have asked for another IEP meeting to possible

> get him an aid and to discuss some other issues like not being

> allowed in the school to observe our son. DON'T ask !. I'm likely to

> start throwing my computer around ( again ).

>

> While all this is going on, I recently started a new job in land.

> The problem is, I live in New Hampshire. So I am only home on

> weekends. It is being very hard on my wife and me. By the way, anyone

> in land want to rent me a room?

>

>

> Any suugestions or advice would be appreciated.

>

> Thanks

>

> Ken M

>

[Guest guest]

Hi Judith,

We plan on calling the doctor (again). They at first said he had a

small cold that we did not notice but this has been going on way way

to long to be a cold.

His periactin dosage is OK and he only gets it at night an hour

before dinner.

In a private e-mail Pat had suggested ADD but I am not convinced but

will keep that thought in the back of my mind and ask the doctor if

we can get him in.

We are most concerned about his inability to complete his writing

assignments in school. often says " my brain doesn't work that

fast. " So we are wondering if he is living in his own fantasy world

and is constantly distracted or if there is something physilogical

going on that is interfering with his cognitive abilities.

Again, thanks for the advice.

Ken M

> Hi Ken,

>

> I wish I had some wonderful advice for you. Here are a couple of

> questions:

>

> 1. Have you seen the pediatrician? Maybe some blood work is in

> order to see if something nonRSS related is going on.

>

> 2. Is he on the correct periactin dosage?

>

> 3. Did someone double him up on medication by accident? One of

the

> idiot doctors from my peditrician's team didn't listen when I said

> was on periactin and prescribed an antihistimine for

something

> else. Needless to say, this was a disaster.

>

> Good luck and keep us updated.

>

> Judith, Steve, (RSS) and (non RSS) almost 4 yr old

twins

[Guest guest]

Hi and Joe.

Thanks for the advice.

doesn't get periactin in the morning. Like Tyler, is a

very cautious child but doesn't seem to worry but is very very

observant of everything. However, everything has to be just so or he

gets a little upset and needs reassurance that the world will not end

if we do it different.

He has not been eating well at lunch. We will see if we can get the

school to prompt him to eat. That may help. I think this because when

he gets home from school he eats almost all the time until bedtime.

So he may be getting run down from lack of food.

Thanks

Ken M

> > Hi everyone,

> >

> > I need a little advice.

> >

> > First an update. My son has RSS. He is 6 3/4. He is on

growth

> > hormone and periactin. No feeding tube. Last May his growth

hormone

> > was increased again and he was put back on periactin. The results

> > have bee dramatic.

> > Since then he has grown almost 3 inches and put on almost 6

pounds.

> > In the 2 years before May, his weight was 29 +/- .5 pounds and

his he

> > grew barely an inch.

> >

> > Now we are having some trouble in school. It seems is tired

> > quite a bit and often rests in school. He sleeps almost 14 hours

a

> > night. He is in bed and asleep by 6 pm and doesn't get up until

> > almost 8 am. Around 6 pm he oftens asks to go to sleep because he

is

> > too tired. While in school the teachers are complaining that he

> > cannot get his work done. He takes forever to make decisions and

> > complete assignments. Specifically, when asked to write 2

sentences,

> > he takes almost 1/2 hour to think of 2 things to write. In math,

> > however, he is ahead of his classmates.

> >

> > He is also having some reading trouble and is getting extra help

> > there but he is only slightly below grade level.

> >

> > So, we are wondering what is up. Why does he seem so tired, why

can't

> > he think of things to write? Why is decesion making such a hard

> > thing? Could this be something medical.

> >

> > In the meantime, we have asked for another IEP meeting to

possible

> > get him an aid and to discuss some other issues like not being

> > allowed in the school to observe our son. DON'T ask !. I'm likely

to

> > start throwing my computer around ( again ).

> >

> > While all this is going on, I recently started a new job in

land.

> > The problem is, I live in New Hampshire. So I am only home on

> > weekends. It is being very hard on my wife and me. By the way,

anyone

> > in land want to rent me a room?

> >

> >

> > Any suugestions or advice would be appreciated.

> >

> > Thanks

> >

> > Ken M

> >

[Guest guest]

Ken,

sounds incredibly like Storm at that age, (and even now).

One problem with Storm was the incredible weight of his head on his

tiny little neck muscles. He would get very tired holding his head in

the writing position, (looking down). Storm's teacher would let him

do his sentences on a computer sometimes. Also, the Occupational

Therapist suggested a raised writing surface. Like a wedge. Higher at

the top so he didn't have to look down as much and put as much

pressure on his neck muscles.

Storm still struggles with his reading, although he makes B's. He is

off the charts ahead of his class in Math! He is ready for times

tables and gets bored with addition and subtraction. (He is in 2nd

grade!)

I hope this helps some. I would rent you a room, but I am in Texas

and that would be an even further drive!!! Ha Ha!!!

Carmen, Mom to Storm, age 8y 6m, weight down to 47 pounds, height is

about 47 inches or more.

[Guest guest]

Hi Ken;-)

One more thing to keep in the back of your mind is a processing issue or

even OT. His fingers may be fatigued quickly or his thought process of what

to write and then having his brain pick out the letters and how to form them

and to get his fingers to write may be a little hard.

I think I would start with the snacks to make sure his blood sugar is up as

suggested and one more thing to look at is his sleep pattern e.g.:

same time to bed to wake and is he sleeping soundly?

That's about it.

Hope all the suggestions give you some guidance.

J

>

> Reply-To: RSS-Support

> Date: Fri, 09 Jan 2004 16:58:00 -0000

> To: RSS-Support

> Subject: Re: Trouble in school

>

> Hi Judith,

>

> We plan on calling the doctor (again). They at first said he had a

> small cold that we did not notice but this has been going on way way

> to long to be a cold.

>

> His periactin dosage is OK and he only gets it at night an hour

> before dinner.

>

> In a private e-mail Pat had suggested ADD but I am not convinced but

> will keep that thought in the back of my mind and ask the doctor if

> we can get him in.

>

>

> We are most concerned about his inability to complete his writing

> assignments in school. often says " my brain doesn't work that

> fast. " So we are wondering if he is living in his own fantasy world

> and is constantly distracted or if there is something physilogical

> going on that is interfering with his cognitive abilities.

>

> Again, thanks for the advice.

>

> Ken M

>

>

>

>

>

>

>

>

>> Hi Ken,

>>

>> I wish I had some wonderful advice for you. Here are a couple of

>> questions:

>>

>> 1. Have you seen the pediatrician? Maybe some blood work is in

>> order to see if something nonRSS related is going on.

>>

>> 2. Is he on the correct periactin dosage?

>>

>> 3. Did someone double him up on medication by accident? One of

> the

>> idiot doctors from my peditrician's team didn't listen when I said

>> was on periactin and prescribed an antihistimine for

> something

>> else. Needless to say, this was a disaster.

>>

>> Good luck and keep us updated.

>>

>> Judith, Steve, (RSS) and (non RSS) almost 4 yr old

> twins

>

>

>

>

>

[Guest guest]

Hi ,

weighs about 35 pounds. His last bone age x-ray showed him to

have the skeletal development of a 3.8 age year old. He has grown a

bit in the last year so he is probably closer in size to a 5 year old

and not a 4 year old.

Oddly enough, his best friend in school is in the 99th percentile --

almost 50 inches tall and 75 pounds and 6 years old,

He takes 6 ml of periactin at night. He can have up to 12 ml a day.

The doctor left it up to us to determine what time of the day to give

what dose with no single dose exceeding 6 ml.

Ken M