Some questions

[Guest guest]

Hi , I am in County, and we have a pretty good LLD class. I

tried to email you off list but for some reason I couldnt. You can email me

off list and I could tell you what I know

Michele

[Guest guest]

Hello , my name is Dana and I am from County too! My son

just turned 4 and was diagnosed by a neurologist, dev. pediatrician, and many

speech language path. as having severe verbal and oral apraxia, mild

dysarthria, mild upper torso hypotonia, and sensory integration

dysfunction(sensory

seeking). He is currently in a preschool disabled program, but he is in their

preschool inclusion class which is a joke because it is 7 disabled and 2

typical, however my son has made tremendous gains and this is due to his school

speech teacher and his private Prompt speech path. Both use PROMPT with him

and both communicate to work together with him. I know this is a long struggle

and as an Elementary teacher and Special Ed. teacher myself I stay on top of

my son's school district and after a lot of IEP meetings we finally have all

the services we want for him and all that he needs. I would not take out

the afternoons yet for your son, because it is very hard to put that back into

his IEP, Maybe talk with his teachers to find out why he is struggling in the

afternoon is something or someone setting him off. My son has behavior

issues at school as well, some days are great and others are not. Can't seem

to

figure out why. I feel that they have to struggle so hard to communicate

with their peers that little things can frustrate them and set them off. I

don't know much about the towns you mentioned, but keep searching for the best

for your son. If you need anything let me know. Where in County are

you? I wish you the best, Dana

[Guest guest]

Hi ,

Regarding dropping school in afternoon......

I would talk w/school about his afternoons before you give up the hours at

school (sometimes it can be hard to get back that support in your IEP and if

you do move you want to enter a new district with a plan in place). Perhaps

your child could get direct services in afternoon with play breaks or something

that will help reduce his frustrations. Unless he is coming home and sleeping

for hours, his frustration is likely due to his issues communicating his needs.

You may want to think about hooking up with a 'functional behaviorist' that

can observe your son at school to help the team figure out why the afternoons

are difficult for him. People are trained to do this and you may want to look

for someone outside the school system for unbiased viewpoints. This is

something you can ask for at a TEAM meeting and the school may pay for if/when

'behavior' is starting to be 'talked' about. Don't give up hours of schooling

until you look at the manifestations of the behavior.

I am with you, it doesn't serve your son any better to just send him home.

When my son was young, he was very energetic and the structure of school helped

him tremendously. If he was at home, he would just spin and with a sign. speech

delay, local afterschool programs only increased frustration.

Good luck

WILLIAM TRAPP <trapptrio@...> wrote:

Hi I'm in NJ and I am new to this group. I have a few

questions/comments.

My son I believe has apraxia. I had two speech therapists say this.

However, I do not have a diagnosis from a neurologist. I am suppose to talk to

his neurologist tomorrow regarding all this. However, she is his neuro for his

seizures. Even though she is very good, I think her speciality is more

epilepsy. I would like to take him to a developmental peditrician for a full

evaluation and hopefully the right diagnosis. I have read Dr. Agin in NYC is

very familiar with apraxia, so that will be my first choice. My question is: Is

it very hard to get an appointment with her? And also I've seen mention of

children's specialized hospital too. Is there a develop. ped. their that anyone

would recommend?.

My son currently is having many behavioral issues at school. He is 6 and in a

self contained LLD class for kindergarten full day. The school now wants him to

come in half a day. I am not sure if this is the right thing for him.

Academically he is doing good and he really loves school. I know that if I had

to pick him up after lunch he will not want to go home and will have a fit about

it. I understand what they are saying, maybe the day is too long for him, since

most of his incidents happen in the afternoon. has also told me that

kindergarten is too hard. He gets upset when something is taught to him and he

doesn't understand it right away. This has happened before. However, I feel the

school needs to learn how to handle him not just get rid of him.

I am also thinking of having him evaluated by a neuro- psycologist because I

think something is going on in his head, maybe from the epilepsy or the apraxia

or something else.

The school gives me the impression that they think, he is just not disciplined

properly but I think it is more then that. I told the school a lot of it has to

do with his speech. Most of the time they understand him but when he gets upset

about something he just shuts down and doesn't tell them what he is thinking.

And when they aren't doing what he is thinking he gets more and more upset. He

ends up hitting and throwing and kicking, whatever it takes because he is so

upset. I don't know what to do or think about all this. My husband and I think

something is not right. But then other times I think he just doesn't listen and

wants to do what he wants to do. He is very stubborn. Has anyone experienced

this?

Another question I have for everyone in Northern NJ. We have also been house

hunting. I am not sure if this is the right thing to do or not. We want to

move for a few reasons, but we don't have to. I would like to get into a better

school system, but the more research I do and things I read, sometimes I think

maybe I shouldn't and I don't know if all the changes would be a good thing for

my son or not. Anyhow, I wanted to know if anyone could give me some feedback

on their schools and how the special ed department was and if they offered an

LLD class. etc.

I am looking in Wayne, Whippany, Montville, Florham Park, East Hanover. Anyone

in County too...

I heard in Montville the LLD Kindergarten class is in Lincoln Park. I heard

WHippany does not have an LLD class. East Hanover has one elem. school and I

heard all the kids go into regular ed. (not sure if this is true or not). I

heard Wayne only has one school for LLD-K (even though that is a very big town)

I really don't know anything about Florham Park. I heard the bigger towns offer

more and unfortunatley the towns we really like are the smaller ones. Any help

is appreciated, although I know every town will have issues....

Sorry this is so long and I hope it all made sense. Any input is appreciated.

in NJ

mom to

[Guest guest]

hi jennifer,

your situation is the same as my situation with my 6 year old boy. the

difference it happened at the beginning of the year and he does not have

seizures. we did choose to comply with the 1/2 day. my boy had big transiton

issues and he was having this behavior in the summer at preschool as well. we

also got a behaviorist working with him 1 hour a day at school and it helped him

and school staff cope with his behavior and she gave strategies of how to

decrease the behaviors. I kinda wanted him home because never in my life did I

see him sooo upset. we did comply with the 1/2 day saying that he would

eventually go to the full day. which as of last wed he is going full day.

yeaaa!!! they went from 9-1 to 9-2 if he did not any physical or threatening

gestures. which is what he did. that took from november to febuary for 9-2 and

then he went to full day in march. he is doing great!!!! they say he is poster

child for the school. I loove all the positive feedback we are

getting from all the staff. another difference is he has some trouble with

cognitive things. so it was important for him to be in school for a full day.

totally get the school has to learn how to deal with the situation and not

kick him out. suggest the behavioralist to come. they probably don't know how

to deal with these behaviors.be helpful and try not to blame. I am special

educator and told the head of special services that the first thing you learn

becoming a special educator is behavior first then work on cognitive issues.

sooo it is there responsiblilty to control his behaviors. as far as 1/2 day see

how it effects him always know that its for the best interest for him and for

the school . do you want him in an enviornment where the staff is not handling

him correctly. that is why i took my boy out. they were hurting him more than

helping him. make sure if you do it that they guarantee that he will put in

full day again.

my boy had the same impatience because he just wants to be like everyone

else.. I understand what your going through.

if you need anymore info email directly at christinerome@...

hope this helps

chris

WILLIAM TRAPP <trapptrio@...> wrote:

Hi I'm in NJ and I am new to this group. I have a few

questions/comments.

My son I believe has apraxia. I had two speech therapists say this.

However, I do not have a diagnosis from a neurologist. I am suppose to talk to

his neurologist tomorrow regarding all this. However, she is his neuro for his

seizures. Even though she is very good, I think her speciality is more

epilepsy. I would like to take him to a developmental peditrician for a full

evaluation and hopefully the right diagnosis. I have read Dr. Agin in NYC is

very familiar with apraxia, so that will be my first choice. My question is: Is

it very hard to get an appointment with her? And also I've seen mention of

children's specialized hospital too. Is there a develop. ped. their that anyone

would recommend?.

My son currently is having many behavioral issues at school. He is 6 and in a

self contained LLD class for kindergarten full day. The school now wants him to

come in half a day. I am not sure if this is the right thing for him.

Academically he is doing good and he really loves school. I know that if I had

to pick him up after lunch he will not want to go home and will have a fit about

it.

[Guest guest]

> Hi I'm in NJ and I am new to this group. I have a few

questions/comments.

> My son I believe has apraxia. I had two speech therapists say

this. However, I do not have a diagnosis from a neurologist. I am

suppose to talk to his neurologist tomorrow regarding all this. However,

she is his neuro for his seizures. Even though she is very good, I think

her speciality is more epilepsy. I would like to take him to a

developmental peditrician for a full evaluation and hopefully the right

diagnosis. I have read Dr. Agin in NYC is very familiar with apraxia, so

that will be my first choice. My question is: Is it very hard to get an

appointment with her? And also I've seen mention of children's

specialized hospital too. Is there a develop. ped. their that anyone

would recommend?.

>

> My son currently is having many behavioral issues at school. He is 6

and in a self contained LLD class for kindergarten full day. The school

now wants him to come in half a day. I am not sure if this is the right

thing for him. Academically he is doing good and he really loves school.

I know that if I had to pick him up after lunch he will not want to go

home and will have a fit about it. I understand what they are saying,

maybe the day is too long for him, since most of his incidents happen in

the afternoon. has also told me that kindergarten is too hard. He

gets upset when something is taught to him and he doesn't understand it

right away. This has happened before. However, I feel the school needs

to learn how to handle him not just get rid of him.

>

> I am also thinking of having him evaluated by a neuro- psycologist

because I think something is going on in his head, maybe from the

epilepsy or the apraxia or something else.

>

> The school gives me the impression that they think, he is just not

disciplined properly but I think it is more then that. I told the school

a lot of it has to do with his speech. Most of the time they understand

him but when he gets upset about something he just shuts down and

doesn't tell them what he is thinking. And when they aren't doing what

he is thinking he gets more and more upset. He ends up hitting and

throwing and kicking, whatever it takes because he is so upset. I don't

know what to do or think about all this. My husband and I think

something is not right. But then other times I think he just doesn't

listen and wants to do what he wants to do. He is very stubborn. Has

anyone experienced this?

>

> Another question I have for everyone in Northern NJ. We have also been

house hunting. I am not sure if this is the right thing to do or not. We

want to move for a few reasons, but we don't have to. I would like to

get into a better school system, but the more research I do and things I

read, sometimes I think maybe I shouldn't and I don't know if all the

changes would be a good thing for my son or not. Anyhow, I wanted to

know if anyone could give me some feedback on their schools and how the

special ed department was and if they offered an LLD class. etc.

> I am looking in Wayne, Whippany, Montville, Florham Park, East

Hanover. Anyone in County too...

> I heard in Montville the LLD Kindergarten class is in Lincoln Park. I

heard WHippany does not have an LLD class. East Hanover has one elem.

school and I heard all the kids go into regular ed. (not sure if this is

true or not). I heard Wayne only has one school for LLD-K (even though

that is a very big town) I really don't know anything about Florham

Park. I heard the bigger towns offer more and unfortunatley the towns we

really like are the smaller ones. Any help is appreciated, although I

know every town will have issues....

>

> Sorry this is so long and I hope it all made sense. Any input is

appreciated.

> in NJ

> mom to

>

[Guest guest]

Remember the book I mentioned to about Misdiagnosis and Dual Diagnosis

of

Gifted Children? I kept running into an interesting paragraph about reactive

hypoglycemia

in these kids, sent it to my daughter (Ben's aunt) today and she confirmed that

in fact she

still deals with this. I think since our kids seem to often be so intense

either with

frustration or anxiety that the same thing might apply to them and have

something to do

with the " afternoon incidents. " I'm going to quote the passage below:

I just got a book today which is entitled, " Misdiagnosis and Dual Diagnoses of

Gifted

Children and Adults. " And I've been browsing a bit in it and for some reason I

keep on

opening to this one page with a section entitled, " Reactive Hypoglycemia. "

" A puzzling situation which may result in dramatic behavior change may arise

from

reactive hypoglycemia. Very often, this condition goes unrecognized as such and

instead

is diagnosed as ADD/ADHD or sometimes just as " immaturity, " though we have also

seen

it diagnosed as Rapid-Cycling Bipolar Disorder.

In our experience, approximately 5% to 7% of highly gifted children--and perhaps

adults--

most with IQ scores in excess of 160, suffer from an unrecognized condition that

appears

to be a functional reactive hypoglycemic condition (Webb, 2000). There children

are

particularly intense and usually physically slender, and the pattern that they

show is a

distinctive one.

In the morning, these children perform very well in school. They are on task,

curious,

eager to learn, and participate avidly. THough they may ask many questions and

intensely

exemplify one or more of the overexcitabilities, they are generally very good

students. In

late morning, often about 10:30 or 11:00 am, their behaviors rapidly change over

a period

of only 15 to 30 minutes. They no longer seem able to stay on task; they become

quite

distractible, very emotional, and they overrreact to frustration, often with

temper tantrums

or tears. They are impulsive and have difficulty in social reciprocity.

These children continue to show this distractible, emotionally volatile pattern

until about

30 or 45 minutes after lunch. Then they function very well at least until 3:30

or 4:00 that

afternoon, at which time the same problem behaviors once again dramatically

appear. The

cyclical pattern of vivid ups and downs typically occurs once in late morning

and once in

mid to late afternoon. If the child has a sugared soda or other sugared

beverage,

particularly one with caffeine, they he may experience more than one cycle each

morning

or afternoon.

For children who show such a behavioral pattern, it can be helpful to try a

dietary change

and to keep a dietary journal. The recommended diet is as follows: (1) no sugar

or other

simple carbohydrates, (2) food that is high in protein, (3) a moderate amount of

complex

carbohydrates, such as whole grain foods, and (4) a mid-morning snack and a mid-

afternoon snack. If the child has reactive hypoglycemia, you will see an

immediate and

often quite dramatic improvement in her functioning that very day. A piece of

meat jerky

at 10:00 am and peanut butter crackers or cheese at 2:00 pm will seem to work

miracles. .. "

The passage continues, commenting that the very intensity of these children

seems to

make their brain use up glucose more rapidly....this kind of reminded me of the

problem

Ben is having with not being able to have protein in school, and what used to

happen to

(and may still to some extent).

Peace,

Kathy E.

> > Hi I'm in NJ and I am new to this group. I have a few

> questions/comments.

> > My son I believe has apraxia. I had two speech therapists say

> this. However, I do not have a diagnosis from a neurologist. I am

> suppose to talk to his neurologist tomorrow regarding all this.

[Guest guest]

> Hi I'm in NJ and I am new to this group. I have a few

questions/comments.

> My son I believe has apraxia. I had two speech therapists

say this. However, I do not have a diagnosis from a neurologist. I

am suppose to talk to his neurologist tomorrow regarding all this.

However, she is his neuro for his seizures. Even though she is very

good, I think her speciality is more epilepsy. I would like to take

him to a developmental peditrician for a full evaluation and

hopefully the right diagnosis. I have read Dr. Agin in NYC is very

familiar with apraxia, so that will be my first choice. My question

is: Is it very hard to get an appointment with her? And also I've

seen mention of children's specialized hospital too. Is there a

develop. ped. their that anyone would recommend?.

>

> My son currently is having many behavioral issues at school. He is

6 and in a self contained LLD class for kindergarten full day. The

school now wants him to come in half a day. I am not sure if this

is the right thing for him. Academically he is doing good and he

really loves school. I know that if I had to pick him up after

lunch he will not want to go home and will have a fit about it.

>

From: Ellen Haber <ehaber5@...>

Date: Fri Mar 24, 2006 2:02pm

Subject: Re: [ApraxiaNetworkofBergenCounty] more questions from

jennifer on cherab digest ehaber5

I actually live in Rockland county ny so I can't answer about the NJ

schools.

But we did try to make an appointment with Dr. Agin. First they

told me it is

about a one year wait so they will call me back in six months.

Which they did

and I set up an appointment for six months later. By that time my

son had been

diagnosed by a pediatric neurologist with verbal and oral motor

apraxia and we

have him in a program that we feel is really helping him so we

cancelled our

appointment with Dr Agin because we felt it wasn't worth the money

at that time

since our son is getting everything we think he needs. She doesn't

accept

insurance so you need to lay out the money and see what your

insurance company

will give you back.

Hope that helps,

Ellen

[Guest guest]

Hi

My daughter is 6 and in separate sped class and she has history of seizures

and neuro condition. She can only stay in school for 4hr w/out becoming very

tired. We are working to increase her day also as she is ready.

In our state, MA, there is nurse (funded by state) at Children's Hospital in a

program called Mass Start. The goal of this position is to provide a link

between the schools and the medical conditions that might behind some issues.

We have worked with this nurse on our TEAM to help understand health and safety

issues while also working with neuro and neurospychologists to help everyone

understand what the child struggles with whether frustrations from speech,

cognition and/or tiredness and fogginess from medications and brains processing

pathways.

Maybe there is a person like this at one of the big city hospitals that

travels to schools.

Just a thought. I don't want to send you in a million different directions.

karen

jbmistletoe <jbmistletoe@...> wrote:

>

> hi jennifer,

> your situation is the same as my situation with my 6 year old

boy. the difference it happened at the beginning of the year and he

does not have seizures. we did choose to comply with the 1/2 day.

my boy had big transiton issues and he was having this behavior in

the summer at preschool as well. we also got a behaviorist working

with him 1 hour a day at school and it helped him and school staff

cope with his behavior and she gave strategies of how to decrease

the behaviors. I kinda wanted him home because never in my life did

I see him sooo upset. we did comply with the 1/2 day saying that he

would eventually go to the full day. which as of last wed he is

going full day. yeaaa!!! they went from 9-1 to 9-2 if he did not

any physical or threatening gestures. which is what he did. that

took from november to febuary for 9-2 and then he went to full day

in march. he is doing great!!!! they say he is poster child for

the school. I loove all the positive feedback we are

> getting from all the staff. another difference is he has some

trouble with cognitive things. so it was important for him to be in

school for a full day.

> totally get the school has to learn how to deal with the

situation and not kick him out. suggest the behavioralist to come.

they probably don't know how to deal with these behaviors.be helpful

and try not to blame. I am special educator and told the head of

special services that the first thing you learn becoming a special

educator is behavior first then work on cognitive issues. sooo it

is there responsiblilty to control his behaviors. as far as 1/2 day

see how it effects him always know that its for the best interest

for him and for the school . do you want him in an enviornment where

the staff is not handling him correctly. that is why i took my boy

out. they were hurting him more than helping him. make sure if you

do it that they guarantee that he will put in full day again.

> my boy had the same impatience because he just wants to be like

everyone else.. I understand what your going through.

>

> if you need anymore info email directly at christinerome@...

> hope this helps

> chris

[Guest guest]

Kathy this is great information and I think can apply to many cognitive levels

as well, not just gifted.

kcv

Kathleen Eickwort <Kathleen_E@...> wrote:

Remember the book I mentioned to about Misdiagnosis and Dual Diagnosis

of

Gifted Children? I kept running into an interesting paragraph about reactive

hypoglycemia

in these kids, sent it to my daughter (Ben's aunt) today and she confirmed that

in fact she

still deals with this. I think since our kids seem to often be so intense

either with

frustration or anxiety that the same thing might apply to them and have

something to do

with the " afternoon incidents. " I'm going to quote the passage below:

I just got a book today which is entitled, " Misdiagnosis and Dual Diagnoses of

Gifted

Children and Adults. " And I've been browsing a bit in it and for some reason I

keep on

opening to this one page with a section entitled, " Reactive Hypoglycemia. "

" A puzzling situation which may result in dramatic behavior change may arise

from

reactive hypoglycemia. Very often, this condition goes unrecognized as such and

instead

is diagnosed as ADD/ADHD or sometimes just as " immaturity, " though we have also

seen

it diagnosed as Rapid-Cycling Bipolar Disorder.

In our experience, approximately 5% to 7% of highly gifted children--and perhaps

adults--

most with IQ scores in excess of 160, suffer from an unrecognized condition that

appears

to be a functional reactive hypoglycemic condition (Webb, 2000). There children

are

particularly intense and usually physically slender, and the pattern that they

show is a

distinctive one.

In the morning, these children perform very well in school. They are on task,

curious,

eager to learn, and participate avidly. THough they may ask many questions and

intensely

exemplify one or more of the overexcitabilities, they are generally very good

students. In

late morning, often about 10:30 or 11:00 am, their behaviors rapidly change over

a period

of only 15 to 30 minutes. They no longer seem able to stay on task; they become

quite

distractible, very emotional, and they overrreact to frustration, often with

temper tantrums

or tears. They are impulsive and have difficulty in social reciprocity.

These children continue to show this distractible, emotionally volatile pattern

until about

30 or 45 minutes after lunch. Then they function very well at least until 3:30

or 4:00 that

afternoon, at which time the same problem behaviors once again dramatically

appear. The

cyclical pattern of vivid ups and downs typically occurs once in late morning

and once in

mid to late afternoon. If the child has a sugared soda or other sugared

beverage,

particularly one with caffeine, they he may experience more than one cycle each

morning

or afternoon.

For children who show such a behavioral pattern, it can be helpful to try a

dietary change

and to keep a dietary journal. The recommended diet is as follows: (1) no sugar

or other

simple carbohydrates, (2) food that is high in protein, (3) a moderate amount of

complex

carbohydrates, such as whole grain foods, and (4) a mid-morning snack and a mid-

afternoon snack. If the child has reactive hypoglycemia, you will see an

immediate and

often quite dramatic improvement in her functioning that very day. A piece of

meat jerky

at 10:00 am and peanut butter crackers or cheese at 2:00 pm will seem to work

miracles. .. "

The passage continues, commenting that the very intensity of these children

seems to

make their brain use up glucose more rapidly....this kind of reminded me of the

problem

Ben is having with not being able to have protein in school, and what used to

happen to

(and may still to some extent).

Peace,

Kathy E.

[Guest guest]

I agree, I think the reason they are saying " gifted, " is because

gifted children use a lot of glucose (energy) in their brains

naturally; however, so do kids who are apraxia when they are anxious

about communicating, or in a situation they can't control, or kids on

the spectrum...they are VERY intense usually.

Peace,

Kathy E>

On Mar 25, 2006, at 8:16 AM, kcventi wrote:

> Kathy this is great information and I think can apply to many

> cognitive levels as well, not just gifted.

>

> kcv

>

> Kathleen Eickwort <Kathleen_E@...> wrote:

> Remember the book I mentioned to about Misdiagnosis and

> Dual Diagnosis of

> Gifted Children? I kept running into an interesting paragraph about

> reactive hypoglycemia

> in these kids, sent it to my daughter (Ben's aunt) today and she

> confirmed that in fact she

> still deals with this. I think since our kids seem to often be so

> intense either with

> frustration or anxiety that the same thing might apply to them and

> have something to do

> with the " afternoon incidents. " I'm going to quote the passage below:

>

> I just got a book today which is entitled, " Misdiagnosis and Dual

> Diagnoses of Gifted

> Children and Adults. " And I've been browsing a bit in it and for

> some reason I keep on

> opening to this one page with a section entitled, " Reactive

> Hypoglycemia. "

>

> " A puzzling situation which may result in dramatic behavior change

> may arise from

> reactive hypoglycemia. Very often, this condition goes

> unrecognized as such and instead

> is diagnosed as ADD/ADHD or sometimes just as " immaturity, " though

> we have also seen

> it diagnosed as Rapid-Cycling Bipolar Disorder.

>

> In our experience, approximately 5% to 7% of highly gifted

> children--and perhaps adults--

> most with IQ scores in excess of 160, suffer from an unrecognized

> condition that appears

> to be a functional reactive hypoglycemic condition (Webb, 2000).

> There children are

> particularly intense and usually physically slender, and the

> pattern that they show is a

> distinctive one.

>

> In the morning, these children perform very well in school. They

> are on task, curious,

> eager to learn, and participate avidly. THough they may ask many

> questions and intensely

> exemplify one or more of the overexcitabilities, they are generally

> very good students. In

> late morning, often about 10:30 or 11:00 am, their behaviors

> rapidly change over a period

> of only 15 to 30 minutes. They no longer seem able to stay on

> task; they become quite

> distractible, very emotional, and they overrreact to frustration,

> often with temper tantrums

> or tears. They are impulsive and have difficulty in social

> reciprocity.

>

> These children continue to show this distractible, emotionally

> volatile pattern until about

> 30 or 45 minutes after lunch. Then they function very well at

> least until 3:30 or 4:00 that

> afternoon, at which time the same problem behaviors once again

> dramatically appear. The

> cyclical pattern of vivid ups and downs typically occurs once in

> late morning and once in

> mid to late afternoon. If the child has a sugared soda or other

> sugared beverage,

> particularly one with caffeine, they he may experience more than

> one cycle each morning

> or afternoon.

>

> For children who show such a behavioral pattern, it can be helpful

> to try a dietary change

> and to keep a dietary journal. The recommended diet is as follows:

> (1) no sugar or other

> simple carbohydrates, (2) food that is high in protein, (3) a

> moderate amount of complex

> carbohydrates, such as whole grain foods, and (4) a mid-morning

> snack and a mid-

> afternoon snack. If the child has reactive hypoglycemia, you will

> see an immediate and

> often quite dramatic improvement in her functioning that very day.

> A piece of meat jerky

> at 10:00 am and peanut butter crackers or cheese at 2:00 pm will

> seem to work

> miracles. .. "

>

> The passage continues, commenting that the very intensity of these

> children seems to

> make their brain use up glucose more rapidly....this kind of

> reminded me of the problem

> Ben is having with not being able to have protein in school, and

> what used to happen to

> (and may still to some extent).

> Peace,

> Kathy E.

>

[Guest guest]

Welcome to the group. It seems like your ped is really on top of

things. That is great. I hope everything with the fluid turns out

okay. I personally have never heard of it before so I can't comment.

Good luck. keep us posted.

Haylee

mom to andre doc band grad

>

> Hi Everyone -

>

> I am new to the group. I have a 6 week old son. Thursday we were at

> the doc. and she was checking out his head because he has some fluid

> on his skull. Not sure why it is there, she thought maybe from us

> holding him in the cradle position all the time. I would sleep with

> him like this for the past few weeks. Also she said his head is flat

> and we need to rotate positions which we are now doing. My main

> questions is this...could this fluid build up be a symptom of

> plagiocephaly? When I was in delivery they had to use the vaccum to

> try and get him out and it popped off leaving a mark that is now gone

> but my husband thinks the fluid could still be because of that. I am

> not sure what to think. Thanks for your help.

>

[Guest guest]

The cost of the helmet varies. It's usually anywhere from $1000 to $5000 depending on your location and what brand of helmet you use. Our Starband will cost $3300. I'm still waiting to see if my insurance will cover it. How long they wear the helmet depends on their age when they start treatment and the severity of the plagio/brachy. Most babies wear the band 3-6mo. I'm sure some have even worn it a little longer. Hope this helps:)

Jackie

Mom to Marlee Starband 2mo

From: sahm_83 <sahm_83@...>Subject: Some QuestionsPlagiocephaly Date: Saturday, July 19, 2008, 3:43 PM

How much does the "helmet" cost and How long do babies usually have to be in one?

[Guest guest]

We were told that our Starband would cost $2800. However, the insurance was billed $4200. The insurance ended up paying $1767.50 and we paid $757.50 out of pocket. The $757.50 was our deductable for durable medical equipment. So....there was no way around it! We have BCBS fed plan, basic option. Good luck!

Some QuestionsPlagiocephalyDate: Saturday, July 19, 2008, 3:43 PM

How much does the "helmet" cost and How long do babies usually have to be in one?

[Guest guest]

Hi , We have BCBS Fed plan too. It's nice to hear they covered some of it. I put in a claim without much hope. Even if they cover half I'll take it. =) Some QuestionsPlagiocephalyDate: Saturday, July 19, 2008, 3:43 PMHow much does the "helmet" cost and How long do babies usually have to be in one?

[Guest guest]

Hi -

We have the BCBS FEP too, standard option, and they covered 75% out

of network and 90% in network. We went with CT which was out of

network and BCBS FEP covered more than $2100, which was great. Do you

have the standard or basic option?

Jake-22m (tort resolved/rt plagio/DOCBand #2 6 weeks)

Jordan-4

>

> From: sahm_83 <sahm_83 (DOT) com>

> Subject: Some Questions

> Plagiocephaly

> Date: Saturday, July 19, 2008, 3:43 PM

>

>

> How much does the " helmet " cost and How long do babies usually have

to

> be in one?

>

[Guest guest]

Hi ,We have the standard BCBS-Fed plan. Wow! I'm not sure if the place we went is in or out of network but either way it's more than we excepted. We go to CIRS-Palo Alto, CA.(StArband).Thanks for the information!!!!Noah, 9 months old wearing a stylish STARband helmet. 4 weeks. Some Questions

> Plagiocephaly

> Date: Saturday, July 19, 2008, 3:43 PM

>

>

> How much does the "helmet" cost and How long do babies usually have

to

> be in one?

>

[Guest guest]

Brad and group;

I have a few questions for ya... How can beans be good for the

intestines??? I get gas so bad I think I am dying... Do you mean

bland by not puting any bacon grease in to taste better???? What is

cruciferous???? I understand what vegetables are cruciferous... but

why are they cruciferous???? j

I would do good on a white food diet seeing that is the most foods I

eat are white. I have most of that (IBS) (RA). What is great about

me I like almost all foods.. Love beans... You must be in the uk you

said bloody miracle... Am I right???

I hope my questions are not stupid..

god bless and take care

gentle hugs

Clora

*****************************************************************

As you may recall, I mentioned going on a diet as dictated by

R. Hurd, nutritionist. This diet is supposed to help with such

conditions as RA, ulcerative colitis and Crohn's. It begins with

going on a very bland diet of beans (white, pinto, kidney, etc. not

green beans) and well-cooked vegetables that are not cruciferous ( so

no broccoli, cauliflower, brussel sprouts, etc.). In the beginning,

one cannot eat anything with sugar, no fruit or fruit juice, no whole

grain foods, nothing with salt, no coffee or tea, caffeinated or

decaffeinated, no dairy products. You can eat eggs and very lean

meat. This must be adhered to for at least two weeks. The soluble

fiber in the beans goes soft on the intestines and gives them time to

heal as well as ridding the body of recirculated toxified bile.

After this time, one can begin other foods slowly. She refers to

what she calls the 'white diet' - white rice, white potatoes, white

bread,

etc. It seems odd to me to introduce these enriched and chemically

bleached kinds of foods but her logic is that they go easier on

digestive system. As you begin to feel better, she reasons

attempting to go off any NSAIDs being used.

Her theory seems to make perfect logical sense as you read it, but

she does leave some rather large gaps. I've begun eating the beans

and I do feel better but I'm not far enough along to say its a bloody

miracle. But we'll see.

>

> Thank you clora it's a great comfort to know I have other people to

> Talk to with the same disease, if it wasn't for this group I

> Don't know what I would do

>

>

> -- [ ] Re: finally got a diagnoses

>

>

> and group;

>

> Awe I am so sorry hon that they found arthritis in your spine...

but

> now you can rest easy knowing what is wrong and why your having so

> much pain... I pray that God heals you and takes this aweful

disease

> away from you in Jesus name I pray amen...

>

> gentle hugs

> Clora

>

> *************************************************************

>

> >

> > My Xray came back and showed arthritis around my spine he SD that

> is why I

> > am having so much problem

> >

> > -------Original Message-------

> >

> >

>

>

>

>

>

>

[Guest guest]

I have tried lecithin from soy bc it is said it doesn`t have soy itself but it

is sticky like syrup and stuck in esophagus.Do you know how to eat it with food?

Probably to add in soup. I can`t tolerate egg yolk and it is the only form I can

take to clean GB.

Another questions: if somebody have such condition as billiary cirrhosis? I have

red it can cause some of my symptoms like pain in esophagus, bruising from solid

food there, etc.

Thanks,

L.

[Guest guest]

You can get lecithin in soft gel caps or in granule form. Granules work great

for putting a tablespoon into a smoothie. Makes it even smoothier. The

esophagus is upstream from the portal vein of the liver. When there is

occlusion to the portal vein for whatever reason and billiary cirrhosis would

certainly do it, it can cause varicosities in the esophagus. Dangerous. If

they blow you can bleed to death. This should be very easy to determine in the

throat from a simple scope procedure. -Dave

Some questions

I have tried lecithin from soy bc it is said it doesn`t have soy itself but

it is sticky like syrup and stuck in esophagus.Do you know how to eat it with

food? Probably to add in soup. I can`t tolerate egg yolk and it is the only form

I can take to clean GB.

Another questions: if somebody have such condition as billiary cirrhosis? I

have red it can cause some of my symptoms like pain in esophagus, bruising from

solid food there, etc.

Thanks,

L.

[Guest guest]

If you will use the granules, they are good used in hot cereal in place

of butter or margarine. Also put into smoothies or juice in blender,

sprinkled over salads also.

Sprinkle granules over hot foods and use in place of other fats.

>

> I have tried lecithin from soy bc it is said it doesn`t have soy

itself but it is sticky like syrup and stuck in esophagus.Do you know

how to eat it with food? Probably to add in soup. I can`t tolerate egg

yolk and it is the only form I can take to clean GB.

> Another questions: if somebody have such condition as billiary

cirrhosis? I have red it can cause some of my symptoms like pain in

esophagus, bruising from solid food there, etc.

>

> Thanks,

> L.

>

[Guest guest]

,

You did not say which state you are from. Every state has different requirements

for public school. In our state, children do not have to attend school until

they are seven, though most children do start at age 5. I would wait as it would

give him many advantages later.

I am glad to hear that he is making progress and hope that he continues to do so

in his therapy sessions.

blessings,

Sandy

>

> Hi All

> I have some questions. My son Elijah has a diagnosis of apraxia. He will be

4 at the end of the month. No one has specified severe, mild etc. He goes to a

private speech therapist for one on one therapy 2 times a week for 30-45 min

sessions. He had speech through first steps from the time he was 2 until he was

3 and aged out. That is when we started the private one on one therapy. We

chose this because our insurance said it would be covered. He would have been

in group therapy through the school and we were told that Elijah would benefit

most from one on one. He has done so very good and has progressed so much in

the year he has been having the private therapy.

> He has never been seen by a pediatric neurologist, developmental pediatrition,

or had a neuro medical exam. Does he need to? What is the Purpose? I will had

that I have requested an OT consult that is in the process of being set up

because I believe he has some mild sensory integration issues so our

pediatrition is having that set up.

>

> Another question that may seem silly. Can I hold him back from starting

kindergarten until he is 6? His birthday is Oct. 27th so he falls behind the

cut off so that already gives us some extra time but if, when the time comes and

I do not feel he is ready that is great to know that is an option! Please let

me know.

>

> I will also add that I take him to a preschool at our church one day a week

and he LOVES it. So he does have interaction with other children.

>

> Thank you all so much for your input. This site has been such a blessing!

> Thanks Again,

>

>