help!!!

[Guest guest]

HIYA CAROL,

THANK YOU SO MUCH FOR GETTING BACK TO ME RE: HELP!! I AM GOING TO SEE MY SISTER, HER HUBBY AND FRASER TOMORROW AND I AM 'GOING TO TAKE THE BULL BY THE HORNS' AND TALK TO THEM ABOUT FRASER AND PLAGIOCEPHALY. I HAVE DOWNLOADED QUITE A BIT FROM THE INTERNET AND AM GOING TO GIVE IT TO JOAN AND DAVID AND EXPLAIN TO THEM THAT THE PROBLEM WITH FRASER IS NOT GOING TO 'SOLVE' ITSELF AND THAT IT IS NOT AS BAD AS IT SEEMS!!! HOPEFULLY WE CAN RESOLVE WEE FRASER'S PROBLEM A.S.A.P. KEEP IN TOUCH AND BEST REGARRDS TO YOU AND YOUR FAMILY. GOD BLESS........MOIRA. :-)

"Carol G." <GATTVA@...> wrote:

Moira,Hello and welcome. What a predicament you have on your hands. As far as approaching the parents about it, that is a tough situation, but one that must be dealt with. You can try and start by telling them that you have come across some research that might help them with Fraser. You can direct them to the Cranial Technologies website for info. www.cranialtech.co.uk you can also direct them to www.plagiocephaly.org and my son's website www.mybandedbaby.typpad.comThis might be enough to educate them on the subject. Seeing that Fraser is 9 months old, you may have to bite the bullet and just lay it out for them, they need to get treatment started as soon as possible. It is not too late for Fraser, we have many babies here that have started at 9 months and older and received excellent correction. As far as the money

problems go, I'm sorry I am not familiar with the services offered in the UK, but we do have a few uk members here and maybe they will give you more info. I do know that you can check on the UK support board and I'm sure they will have better info. on that matter, here is the address for it http://groups.msn.com/PlagioUK/messages.msnw. Hope this helps, CAROLG > HIYA. MY NAME IS MOIRA AND I AM THE AUNTY OF 'BABY' FRASER. > I AM ON THIS WEB PAGE FOR SOME HELP FROM ANYONE AS I DON'T KNOW HOW TO > APROACH THE CURRENT

SITUATION!! MY NEPHEW, FRASER, HAS A SEVERE > FLATTENING OF HIS HEAD AND I THINK IT IS PLAGIOCEPHALY..........INFACT, > AS I WORK IN THE MEDICAL PROFESSION, I KNOW IT IS, BUT I DON'T KNOW HOW > TO TELL MY SISTER THAT HER 9 MONTH OLD BOY HAS THE CONDITION, WITHOUT > UPSETTING HER.> SHE SEEMS TO THINK THAT 'FRASER'S HEAD' WILL STILL MOULD IN TO SHAPE AS > NORMAL, YET I KNOW THAT IT IS NOT GOING TO HAPPEN. MY SISTER AND HER > HUSBAND ARE BOTH UNEMPLOYED AND CANNOT AFFORD THE 'STARBAND' SO WHAT > ARE THEY SUPPOSE TO DFO???? > IF I HAD THE EXTRA CASH, I WOULD GLADLY GIVE IT TO THEM TO HELP FRASER, > BUT I DON'T. :-( I JUST DO NOT KNOW WHAT TO DO TO APROACH THE > PROBLEM!!! > I AM SO SAD ABOUT IT ALL, BUT I FEEL I HAVE TO DO SOMETHING BEFORE IT > IS TOO LATE FOR FRASER TO GET SOME HELP.> CAN YOU GIVE ME SOME INFO ON

WHAT I SHOULD DO??????> REGARDS, MOIRA. :-)

To help you stay safe and secure online, we've developed the all new Security Centre.

[Guest guest]

With a documentation of apraxia, you should be able to get more services

through EI.

We were able to go from 1 to 2 SLP sessions a week, and got once a week OT.

I suspect your son also has low tone? With a diagnosis of hypotonia you

should be able to get insurance to cover at least once a week OT. Its a

piece meal - getting services from every possible angle. Then whatever you

can do out-of-pocket in addition will pay off in the long run, but it is all

very expensive.

Consider upping your dose of omega, or if you are already giving 1/2 tsp,

add EPA. We saw a pretty dramatic improvement in speech when EPA was added.

Then 2-3 word sentences when we doubled the dose. (Now 6-7 words 3x a

day...but very difficult to understand). But the increased babbling and

" making noice " in the beginning was still improvement for us since my son

had been virtually silent 6 months ago. He also started repeating things

more a few weeks into it, which he had never done before. But the higher

doses brought with it more surges in his speech plus better coordination.

You will need letters of medical necessity (great examples in 's Late

Talker book) to help get more services. A diagnsosis from a good

developmental pediatrician will help. Marilyn Agin is exceptional for

apraxia. We would have flown out to see her if we weren't able to access an

excellent developmentalist...but I didn't get the help or advice I needed

until our 2nd opinion. First round was " yeah he's delayed " . No kidding. I

was told apraxia couldn't be diagnosed and the concept of " rewiring of the

brain " at a young age was rediculous (despite all the evidence coming out of

institutions like Hopkins and Stanford).

The neurologist typically won't be that helpful in the diagnosis. Some are

more savy with the developmental neurological disorders than others, but

really not the best choice unless there are neurological issues you need

addressed...like seizures, or need documentation of some of the neurological

" soft signs " like low tone etc. They may recommend an MRI which may or may

not be necessary. For all signs pointing to typical childhood apraxia of

speech, not likely to reveal much. But if there are other things not quite

right (like my son has right sided weakness - not typical of apraxia - we

are finally getting the MRI...but didnt' want to expose him to

sedation/anesthesia unless it was really warranted). But the info you need

you can also get from a good developmentalist plus more guidance. That is

probably the best route.

I also just learned about ish Rite...the kids are eligible once they

turn 3, but typically a long waiting list. Free ST services, and the

therapists are supposedly pretty good, but again, depends on the

enter. -

[ ] help!!!

My son will be 2 on the 21st and we KNOW he is severely Apraxic. Of

course we get the same... " he'll talk when he's ready, don't worry "

from most who don't spend time with him and realize that it's not

that he won't talk it's that he CAN'T talk. He has no problem with

receptive language what so ever. Infact he understands everything

you say. He rapidly picks up sign language and even makes up his own

signs. He can not blow out of his mouth...blow bubbles, blow

pinwheels...anything. He has the classic open mouth posture and the

constant drooling due to the lack of muscle tone. He finally began

sticking his tongue out at about 20 months and at 21 1/2 months began

to say " ama " for mama. He has at times been able to say a word

spontaneously and then can not do it again. At one point he walked

around the house for 2 days saying " moo " for what a cow says and then

was never able to do it again. He also has Sensory Integration

Disorder...but we can easily manage that. He has alway had feeding

issues...but he is a healthy 31 pounds as lo last week so it's not

affecting his nutrition. He has been recieving Birth to Three

services since June 2005 and it is just not enough. He has speech

Therapy once a week for an hour and Occupational Therapy twice a

month for an hour. We started him on the complete Omega on the 21st

of April and he has made some improvement....he makes more noise but

still no words or anything other than just like a humming or growling

noise that he's alwasy done, but more often. It's great

improvement....but he is so frustrated. We are too...but more for

him than about him. We don't know what else to do at this point. He

has his 2 year check up next week so I will make his Pediatrician

jump on the ball with this so he can get the help he needs, but I

don't know where else to turn at this point. Do we take him to s

neurologist? a developmental pediatrician? who? what? We live in

Northwest Connecticut and I have not been able to find many resources

here. I know Dr.Agin is in NYC which is not too far but how do I get

in touch with her and would she be of any help to us or just another

person to say " yes he is apraxic " and leave it at that. I just

don't want him to fall through the cracks. He is only 2 so most

don't even mwant to say Apraxia with him....but it is what it is and

we know that. I know that the later we start working on it the less

of a chance he will have to speak normally if at all. Someone point

me in some direction please we are just at a loss with the resources

we have found and that's not many.

Thank you

[Guest guest]

Thank you for this post!

Early Intervention (called First Steps here in Central FL) finally

called me last week (I was on an 8 month waiting list) and they told

me they couldn't make an appt for my son since he would age out

(services end once your child turns 3) before the soonest appt they

could make for him.

I finally got through to my local county's Pre-Kindergarten

Disabilities number (been calling since March) to make an appt for a

screening. It's not until Aug 4. The receptionist told me I would be

getting a questionaire to fill out and to bring any evaluations he

has had.

We just got back from the pediatric neurologist who gave us a paper

called " Physician's Orders " for " Speech therapy to evaluate and

treat " . He also marked codes 758.9 " Conditions due to anomaly of

unspecified chromosome " and 783.40 " Symptom in childhood, lack of

normal physiological development, unspecified " . We go for genetic

testing May 24.

I also have evaluations from 2 SLP-CCC's. One for dyspraxia and one

for dysarthria.

My insurance company still won't pay for speech therapy. They wn't

pay for occupational therapy either. I have United Healthcare HMO.

>

> With a documentation of apraxia, you should be able to get more

services

> through EI.

> We were able to go from 1 to 2 SLP sessions a week, and got once a

week OT.

> I suspect your son also has low tone? With a diagnosis of

hypotonia you

> should be able to get insurance to cover at least once a week OT.

Its a

> piece meal - getting services from every possible angle. Then

whatever you

> can do out-of-pocket in addition will pay off in the long run, but

it is all

> very expensive.

>

> Consider upping your dose of omega, or if you are already giving

1/2 tsp,

> add EPA. We saw a pretty dramatic improvement in speech when EPA

was added.

> Then 2-3 word sentences when we doubled the dose. (Now 6-7 words

3x a

> day...but very difficult to understand). But the increased

babbling and

> " making noice " in the beginning was still improvement for us since

my son

> had been virtually silent 6 months ago. He also started repeating

things

> more a few weeks into it, which he had never done before. But the

higher

> doses brought with it more surges in his speech plus better

coordination.

>

> You will need letters of medical necessity (great examples in

's Late

> Talker book) to help get more services. A diagnsosis from a good

> developmental pediatrician will help. Marilyn Agin is exceptional

for

> apraxia. We would have flown out to see her if we weren't able to

access an

> excellent developmentalist...but I didn't get the help or advice I

needed

> until our 2nd opinion. First round was " yeah he's delayed " . No

kidding. I

> was told apraxia couldn't be diagnosed and the concept

of " rewiring of the

> brain " at a young age was rediculous (despite all the evidence

coming out of

> institutions like Hopkins and Stanford).

>

> The neurologist typically won't be that helpful in the diagnosis.

Some are

> more savy with the developmental neurological disorders than

others, but

> really not the best choice unless there are neurological issues

you need

> addressed...like seizures, or need documentation of some of the

neurological

> " soft signs " like low tone etc. They may recommend an MRI which

may or may

> not be necessary. For all signs pointing to typical childhood

apraxia of

> speech, not likely to reveal much. But if there are other things

not quite

> right (like my son has right sided weakness - not typical of

apraxia - we

> are finally getting the MRI...but didnt' want to expose him to

> sedation/anesthesia unless it was really warranted). But the info

you need

> you can also get from a good developmentalist plus more guidance.

That is

> probably the best route.

>

> I also just learned about ish Rite...the kids are eligible

once they

> turn 3, but typically a long waiting list. Free ST services, and

the

> therapists are supposedly pretty good, but again, depends on the

> enter. -

>

>

> [ ] help!!!

>

>

> My son will be 2 on the 21st and we KNOW he is severely Apraxic.

Of

> course we get the same... " he'll talk when he's ready, don't worry "

> from most who don't spend time with him and realize that it's not

> that he won't talk it's that he CAN'T talk. He has no problem with

> receptive language what so ever. Infact he understands everything

> you say. He rapidly picks up sign language and even makes up his

own

> signs. He can not blow out of his mouth...blow bubbles, blow

> pinwheels...anything. He has the classic open mouth posture and

the

> constant drooling due to the lack of muscle tone. He finally began

> sticking his tongue out at about 20 months and at 21 1/2 months

began

> to say " ama " for mama. He has at times been able to say a word

> spontaneously and then can not do it again. At one point he walked

> around the house for 2 days saying " moo " for what a cow says and

then

> was never able to do it again. He also has Sensory Integration

> Disorder...but we can easily manage that. He has alway had feeding

> issues...but he is a healthy 31 pounds as lo last week so it's not

> affecting his nutrition. He has been recieving Birth to Three

> services since June 2005 and it is just not enough. He has speech

> Therapy once a week for an hour and Occupational Therapy twice a

> month for an hour. We started him on the complete Omega on the

21st

> of April and he has made some improvement....he makes more noise

but

> still no words or anything other than just like a humming or

growling

> noise that he's alwasy done, but more often. It's great

> improvement....but he is so frustrated. We are too...but more for

> him than about him. We don't know what else to do at this point.

He

> has his 2 year check up next week so I will make his Pediatrician

> jump on the ball with this so he can get the help he needs, but I

> don't know where else to turn at this point. Do we take him to s

> neurologist? a developmental pediatrician? who? what? We live

in

> Northwest Connecticut and I have not been able to find many

resources

> here. I know Dr.Agin is in NYC which is not too far but how do I

get

> in touch with her and would she be of any help to us or just

another

> person to say " yes he is apraxic " and leave it at that. I just

> don't want him to fall through the cracks. He is only 2 so most

> don't even mwant to say Apraxia with him....but it is what it is

and

> we know that. I know that the later we start working on it the

less

> of a chance he will have to speak normally if at all. Someone

point

> me in some direction please we are just at a loss with the

resources

> we have found and that's not many.

>

> Thank you

>

[Guest guest]

Hi ,

I haven't been keeping up with the postings lately but yours caught my eye

as I was trying to catch up with reading through them. We're going through

the same situation as you.My daughter has apraxia,mild hypotonia and

sensory integration disorder.We went to Dr.Agin's office in March and saw

Dr.Govind.He is terrific.(there was a long wait to see Dr.Agin).I would make

the trip to NYC if I were you.The written evaluation that he provided has

been very valuable in getting the right amount services for . It gives

a detailed summary of the seriousness of her situation and the importance of

intensive therapy.The entire visit took about 3 hours and the exam was very

thorough and informal. was able to last through the entire exam without

complaining.Let me know if you have any questions.I know how you feel.I

which someone had all the answers for us .I too felt was slipping

through the cracks.I felt Dr.Agin's office pointed us in the right

direction.

Good Luck!

Elaine

[Guest guest]

Elaine

Thank you for your reply. How old is ? My son is only 2 so he is not

going to sit for a lengthy evaluation....especially at a dr's off which he

hates. He just had therapy this morning with his OT and ST....he doesn't even

have the focus to just work with them for the hour they are here. Part of the

problem is I also have a 3 1/2 year old daughter that is always home when he has

therapy and it's definitely a distraction to him. They are focusing on oral

motor activities with him since at such a young age working on just the

speech...Repeat what I say...is not possible. I guess that's a big part of the

reason the professionals hold off on diagnosing Apraxia until a child is atleast

3. It's just so frustrationg because we KNOW he has Apraxia. Is there a way

to e-mail Dr.Agin for an opinion on what steps we need to take at this point?

Thank you.

[Guest guest]

,

I'm adding my 2 cents here because my son is 33mo and therapy has been

difficult to implement for him too. He is likely apraxic (what the SLP and I

think) and we are headed to the dev ped in June. He has no other diagnosis at

this time although we are researching SDI and possible recepitive delays (so

hard to tell at this age) - trying signing & PECS to communicate..

He also has the attention span of a typical 2 yr old and is completely

non-cooperative with therapy in the home, he has too many distractions.

We have set up our house to help with the communication gap - he can pretty

much get to or do anything he needs/wants (snacks, drinks, toys, movies). I know

not all parents agree with this route but it has worked for us. The only problem

is that now with home based EI the therapist comes here and as she put it " We

just breathe his air " . We tried setting up a specific " work " area with a desk

and learning materials but it has not worked so far. Eg: this morning my dh was

outside bulding a fence and my ds desperately wanted to be out there with him

(he always goes outside to work with daddy) so when the SLP showed up it was a

joke. I can force my ds to come in and particiapate but it won't be productive,

just an hour of screaming fit. My son is VERY stubborn and has his own way of

doing things, on his own time. He has a very hard time with forced transitions.

So what we did was to change therapy to center based. We will go see the SLP

so the therapy can be provided in a controlled environment. I am hopeful it will

work. I also talked to her about making the therapy more play based - if it

involved balls, cars, swings, etc my son is going to be much more " on board "

with the process.The government has mandated that services be provided in the

least restrictive environment (LRE) but the LRE is not always the most

theraputic for each child.

Keep brainstorming and pushing for what you need till something works. We are

currently on our third revision of the FSP and hoping that something works soon.

Good Luck

Martha

wendybird115@... wrote:

Elaine

Thank you for your reply. How old is ? My son is only 2 so he is not

going to sit for a lengthy evaluation....especially at a dr's off which he

hates. He just had therapy this morning with his OT and ST....he doesn't even

have the focus to just work with them for the hour they are here. Part of the

problem is I also have a 3 1/2 year old daughter that is always home when he has

therapy and it's definitely a distraction to him. They are focusing on oral

motor activities with him since at such a young age working on just the

speech...Repeat what I say...is not possible. I guess that's a big part of the

reason the professionals hold off on diagnosing Apraxia until a child is atleast

3. It's just so frustrationg because we KNOW he has Apraxia. Is there a way

to e-mail Dr.Agin for an opinion on what steps we need to take at this point?

Thank you.

[Guest guest]

I have to disagree about the usefulness of seeing a neurologist. Ours

spent an hour with my 19 month old and said

" apraxia and oral motor hypotonia " , no doubt about it. Some are

certainly helpful and aware even in the absence of other issues.

>

> With a documentation of apraxia, you should be able to get more services

> through EI.

> We were able to go from 1 to 2 SLP sessions a week, and got once a

week OT.

> I suspect your son also has low tone? With a diagnosis of hypotonia you

> should be able to get insurance to cover at least once a week OT. Its a

> piece meal - getting services from every possible angle. Then

whatever you

> can do out-of-pocket in addition will pay off in the long run, but

it is all

> very expensive.

>

> Consider upping your dose of omega, or if you are already giving 1/2

tsp,

> add EPA. We saw a pretty dramatic improvement in speech when EPA was

added.

> Then 2-3 word sentences when we doubled the dose. (Now 6-7 words 3x a

> day...but very difficult to understand). But the increased babbling and

> " making noice " in the beginning was still improvement for us since

my son

> had been virtually silent 6 months ago. He also started repeating things

> more a few weeks into it, which he had never done before. But the higher

> doses brought with it more surges in his speech plus better

coordination.

>

> You will need letters of medical necessity (great examples in 's

Late

> Talker book) to help get more services. A diagnsosis from a good

> developmental pediatrician will help. Marilyn Agin is exceptional for

> apraxia. We would have flown out to see her if we weren't able to

access an

> excellent developmentalist...but I didn't get the help or advice I

needed

> until our 2nd opinion. First round was " yeah he's delayed " . No

kidding. I

> was told apraxia couldn't be diagnosed and the concept of " rewiring

of the

> brain " at a young age was rediculous (despite all the evidence

coming out of

> institutions like Hopkins and Stanford).

>

> The neurologist typically won't be that helpful in the diagnosis.

Some are

> more savy with the developmental neurological disorders than others, but

> really not the best choice unless there are neurological issues you need

> addressed...like seizures, or need documentation of some of the

neurological

> " soft signs " like low tone etc. They may recommend an MRI which may

or may

> not be necessary. For all signs pointing to typical childhood apraxia of

> speech, not likely to reveal much. But if there are other things not

quite

> right (like my son has right sided weakness - not typical of apraxia

- we

> are finally getting the MRI...but didnt' want to expose him to

> sedation/anesthesia unless it was really warranted). But the info

you need

> you can also get from a good developmentalist plus more guidance.

That is

> probably the best route.

>

> I also just learned about ish Rite...the kids are eligible once

they

> turn 3, but typically a long waiting list. Free ST services, and the

> therapists are supposedly pretty good, but again, depends on the

> enter. -

>

>

> [ ] help!!!

>

>

> My son will be 2 on the 21st and we KNOW he is severely Apraxic. Of

> course we get the same... " he'll talk when he's ready, don't worry "

> from most who don't spend time with him and realize that it's not

> that he won't talk it's that he CAN'T talk. He has no problem with

> receptive language what so ever. Infact he understands everything

> you say. He rapidly picks up sign language and even makes up his own

> signs. He can not blow out of his mouth...blow bubbles, blow

> pinwheels...anything. He has the classic open mouth posture and the

> constant drooling due to the lack of muscle tone. He finally began

> sticking his tongue out at about 20 months and at 21 1/2 months began

> to say " ama " for mama. He has at times been able to say a word

> spontaneously and then can not do it again. At one point he walked

> around the house for 2 days saying " moo " for what a cow says and then

> was never able to do it again. He also has Sensory Integration

> Disorder...but we can easily manage that. He has alway had feeding

> issues...but he is a healthy 31 pounds as lo last week so it's not

> affecting his nutrition. He has been recieving Birth to Three

> services since June 2005 and it is just not enough. He has speech

> Therapy once a week for an hour and Occupational Therapy twice a

> month for an hour. We started him on the complete Omega on the 21st

> of April and he has made some improvement....he makes more noise but

> still no words or anything other than just like a humming or growling

> noise that he's alwasy done, but more often. It's great

> improvement....but he is so frustrated. We are too...but more for

> him than about him. We don't know what else to do at this point. He

> has his 2 year check up next week so I will make his Pediatrician

> jump on the ball with this so he can get the help he needs, but I

> don't know where else to turn at this point. Do we take him to s

> neurologist? a developmental pediatrician? who? what? We live in

> Northwest Connecticut and I have not been able to find many resources

> here. I know Dr.Agin is in NYC which is not too far but how do I get

> in touch with her and would she be of any help to us or just another

> person to say " yes he is apraxic " and leave it at that. I just

> don't want him to fall through the cracks. He is only 2 so most

> don't even mwant to say Apraxia with him....but it is what it is and

> we know that. I know that the later we start working on it the less

> of a chance he will have to speak normally if at all. Someone point

> me in some direction please we are just at a loss with the resources

> we have found and that's not many.

>

> Thank you

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

That's great. As I said, some are more savy with the developmental

neurological disorders than others. This is not typically the

ase. -

[ ] help!!!

>

>

> My son will be 2 on the 21st and we KNOW he is severely Apraxic. Of

> course we get the same... " he'll talk when he's ready, don't worry "

> from most who don't spend time with him and realize that it's not

> that he won't talk it's that he CAN'T talk. He has no problem with

> receptive language what so ever. Infact he understands everything

> you say. He rapidly picks up sign language and even makes up his own

> signs. He can not blow out of his mouth...blow bubbles, blow

> pinwheels...anything. He has the classic open mouth posture and the

> constant drooling due to the lack of muscle tone. He finally began

> sticking his tongue out at about 20 months and at 21 1/2 months began

> to say " ama " for mama. He has at times been able to say a word

> spontaneously and then can not do it again. At one point he walked

> around the house for 2 days saying " moo " for what a cow says and then

> was never able to do it again. He also has Sensory Integration

> Disorder...but we can easily manage that. He has alway had feeding

> issues...but he is a healthy 31 pounds as lo last week so it's not

> affecting his nutrition. He has been recieving Birth to Three

> services since June 2005 and it is just not enough. He has speech

> Therapy once a week for an hour and Occupational Therapy twice a

> month for an hour. We started him on the complete Omega on the 21st

> of April and he has made some improvement....he makes more noise but

> still no words or anything other than just like a humming or growling

> noise that he's alwasy done, but more often. It's great

> improvement....but he is so frustrated. We are too...but more for

> him than about him. We don't know what else to do at this point. He

> has his 2 year check up next week so I will make his Pediatrician

> jump on the ball with this so he can get the help he needs, but I

> don't know where else to turn at this point. Do we take him to s

> neurologist? a developmental pediatrician? who? what? We live in

> Northwest Connecticut and I have not been able to find many resources

> here. I know Dr.Agin is in NYC which is not too far but how do I get

> in touch with her and would she be of any help to us or just another

> person to say " yes he is apraxic " and leave it at that. I just

> don't want him to fall through the cracks. He is only 2 so most

> don't even mwant to say Apraxia with him....but it is what it is and

> we know that. I know that the later we start working on it the less

> of a chance he will have to speak normally if at all. Someone point

> me in some direction please we are just at a loss with the resources

> we have found and that's not many.

>

> Thank you

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

We are in the exact spot as you are. Our 3 year old daughter has been

making good progress, but along with it is horribly frustrated,

tantrumy, and just downright unpleasant to be around (the nice way to

put it) It seems like she is almost going through a " terrible twos "

type thing with all the negativity and hitting (in our case its

actually kicking....) She has been saying " no no no no noooo!! " to

everything and immediately flopping on the ground and screaming. I

have heard that 3 can be a very trying age especially for children who

missed or barely went through the independence issues at 2. Add

apraxia and sensory issues into the mix and things have just been

horrible. I am very interested to hear others suggestions, too. I was

actually going to post on this tonight too.

>

> it's been a long time since i've been here. i have a 3 1/2 yr old

> girl who has made unbelievable strides in speech but has become very

> aggressive lately. hitting only mom and dad uncontrollably. can she

> not verbalize her feelings? her speech has been more understandable

> but when it comes to tantrums, wow! she also suffers from sensory

> integration dysfunction. any ideas out there? behavior therapist?

>

> melissa

>

[Guest guest]

,

My son tried this when he was around 2.5 - 3.0 y.o. and we suffered through

it. But each time he did it, we made sure he was told very sternly that it

was not acceptable behavior. He SLP suggested we have a place for him to go

when he was acting out like this...we used a bean bag. We would make him

sit there for a good 5-10 minutes without moving from it. We did this

consistently and today at 4.5 y.o., he totally understands that

hitting/slapping is plain wrong. My suggestion to you is to do the same.

Just because they have SID (like my son) and Apraxia does not mean they do

not understand right from wrong when explained to them. Your parents should

stress and reinforce this concept and I'll bet she'll figure it out. It

takes time...6 mos...est.

In the mean time, know that we too have gone through similar situations

here. You are not alone.

Thanks,

Myra

it's been a long time since i've been here. i have a 3 1/2 yr old

girl who has made unbelievable strides in speech but has become very

aggressive lately. hitting only mom and dad uncontrollably. can she

not verbalize her feelings? her speech has been more understandable

but when it comes to tantrums, wow! she also suffers from sensory

integration dysfunction. any ideas out there? behavior therapist?

melissa

[Guest guest]

What you are describing is similar to what happened to my son on

ProEFA after having been on it for more than a year. We eventually

took him off it and the behaviour resolved itself 100%. There have

been others on this board who have commented on this kind of

aggressive behaviour, as well. If you're using ProEFA, I would

recommend scaling it back or removing it altogether for a few days

(it took ab out 36 hours for it to completely remove itself from his

system). Keep a written log so you can be more objective about the

causes - food, sleep, exercise, supplements, etc.. Then, if you

determine that it is the supplements, it's up to you to decide if

it's worth it to continue. In my case, it was certainly NOT -

though he saw benefits, his behaviour was so in the toilet and

disruptive for the family that it clearly was not worth it. On the

good side, we saw no regression off it.

Just FYI...

Marina

> >

> > it's been a long time since i've been here. i have a 3 1/2 yr

old

> > girl who has made unbelievable strides in speech but has become

very

> > aggressive lately. hitting only mom and dad uncontrollably.

can she

> > not verbalize her feelings? her speech has been more

understandable

> > but when it comes to tantrums, wow! she also suffers from

sensory

> > integration dysfunction. any ideas out there? behavior

therapist?

> >

> > melissa

> >

>

[Guest guest]

Marina I know that you are one of the people,-but I'd like to keep

better track of who else has seen this happen in the way you report

it because it appears to be pretty rare. Also from memory your

child's speech ability when taken off was normal? If anything I've

heard of this happening to children who are not on any EFAs due to

frustration. When I checked the archives for this your name was the

only one that came up in regards to this behavior but again they

changed the search engine here at and I don't have it down

yet. Can you or anyone help here?

Better yet -if you are reading this and have seen this happen with

your child (on ProEFA) please let us know. If you've seen this

happen prior to the ProEFA where the bad behaviors went away once on

the EFAs (like R from The Late Talker book -'s Mom since

I just spoke to you the other day and know you still do lurk and

read here!) Let us know about you too!

And and since we don't know if your child is on any

supplementation of any kind -if your child is on the ProEFA and you

stop it do let us know if you see a decrease in aggressive behavior

as well as let us know if you see any decrease in speech ability.

If you start again let us know if the behaviors and speech return.

Outside of children that are talking normal -I still say what we

view as negative may actually be a sign of positive. Many of you

know what my views on frustration are for example. (If I can find

's story I'll post it later)

On the other hand hitting is not acceptable...ever and never to

anyone. Both my boys tried it at one time and there is no excuse

for it...frustrated or not! We raised our boys with time outs and

other punishments -neither of them were allowed to hit us -and we

didn't hit them either (even if they tried to hit us at that one

point)

=====

[Guest guest]

Marina, how much were you giving him? I thought we would be in the

clear since we haven't seen any negative reactions, but if I

understood you right, we could see reactions a year from now?

> > >

> > > it's been a long time since i've been here. i have a 3 1/2 yr

> old

> > > girl who has made unbelievable strides in speech but has

become

> very

> > > aggressive lately. hitting only mom and dad uncontrollably.

> can she

> > > not verbalize her feelings? her speech has been more

> understandable

> > > but when it comes to tantrums, wow! she also suffers from

> sensory

> > > integration dysfunction. any ideas out there? behavior

> therapist?

> > >

> > > melissa

> > >

> >

>

[Guest guest]

Hi. A developmental psychologist who runs a playgroup (for all

types of kids, by the way, not just " special needs " ones) warned us

that though age two is known for being " terrible " it's actually age

3 that presents the most problems with tantrums, power struggles and

the like. Most of the parents she was addressing had typical kids,

so this wasn't a special thing for kids with apraxia or PDD or

anything.

> >

> > it's been a long time since i've been here. i have a 3 1/2 yr

old

> > girl who has made unbelievable strides in speech but has become

very

> > aggressive lately. hitting only mom and dad uncontrollably.

can she

> > not verbalize her feelings? her speech has been more

understandable

> > but when it comes to tantrums, wow! she also suffers from

sensory

> > integration dysfunction. any ideas out there? behavior

therapist?

> >

> > melissa

> >

>

[Guest guest]

This is second hand, but I posted a little while ago about my OT's

nephew (typical, verbal) having bad behavior when his mom ran out of

fish oils (no idea what kind/brand) and then getting better when he

went back on.

By the way, my son (26 mos) is hitting a bit too, which I don't

attribute to ProEFA since lots of toddlers do this (I'm told) and

I'm only giving him 1 capsule/day right now. Anyway, if I freak out

about it too much he does it MORE (while smiling) so I've started to

say calmly, " No hitting. I don't play with people who hit. " And

then I ignore him for a bit. I think this might be working. Maybe.

Some days.

>

> Marina I know that you are one of the people,-but I'd like to keep

> better track of who else has seen this happen in the way you

report

> it because it appears to be pretty rare. Also from memory your

> child's speech ability when taken off was normal? If anything

I've

> heard of this happening to children who are not on any EFAs due to

> frustration. When I checked the archives for this your name was

the

> only one that came up in regards to this behavior but again they

> changed the search engine here at and I don't have it down

> yet. Can you or anyone help here?

>

> Better yet -if you are reading this and have seen this happen with

> your child (on ProEFA) please let us know. If you've seen this

> happen prior to the ProEFA where the bad behaviors went away once

on

> the EFAs (like R from The Late Talker book -'s Mom

since

> I just spoke to you the other day and know you still do lurk and

> read here!) Let us know about you too!

>

> And and since we don't know if your child is on any

> supplementation of any kind -if your child is on the ProEFA and

you

> stop it do let us know if you see a decrease in aggressive

behavior

> as well as let us know if you see any decrease in speech ability.

> If you start again let us know if the behaviors and speech return.

>

> Outside of children that are talking normal -I still say what we

> view as negative may actually be a sign of positive. Many of you

> know what my views on frustration are for example. (If I can find

> 's story I'll post it later)

>

> On the other hand hitting is not acceptable...ever and never to

> anyone. Both my boys tried it at one time and there is no excuse

> for it...frustrated or not! We raised our boys with time outs and

> other punishments -neither of them were allowed to hit us -and we

> didn't hit them either (even if they tried to hit us at that one

> point)

>

> =====

>

[Guest guest]

,

It sounds like he exhibits major communication behaviors. Go to the behavior

analyst website and you can find a behavior analyst in your area to work

with him. I'd specifically want one who uses the analysis of verbal

behavior. Not knowing where you live, I don't know if you are in a state

that provides services to kids with autism. Have you taken him to a

developmental pediatrician or psychologist for an evaluation/dx? You really

need someone in to help you get on track, you're not going to be able to do

it alone. But there is help and things can get SO much better! One thing you

can try while you are doing the other things is sign language. Start with

one sign for something he really wants, show him he can get what he wants

without aggressive behaviors. I still believe you are going to have to get

professional help to really get a handle on all this, but if you give him a

way to communicate his needs, some should stop. Don't worry about the sign

being exact, the point is not for him to use it forever, just as a start.

And if he has other issues with gross/fine motor he won't be able to make

the signs perfectly. Again, not the concern, the concern is that he can tell

you or other caretakers what he needs/wants. My son started with the sign

for " on " to get a video turned on. Best of luck, please don't give up, but

DO get help.

----Original Message Follows----

From: " chatthisway " <chatthisway@...>

Subject: [ ] Help!!!

Date: Tue, 01 Aug 2006 06:16:35 -0000

is very strong and very strong willed seven year old with

developmental delayes and wobbly gross motor. He is non verbal ans

has a hard time mastering signs. Scary combo. Since cannot

communicate well I can understand why he may behave frustrated

like, But he is now way to difficult for me to handle. My

daughter is ADHD so I know how one with ADHD acts, but of course

also have developmental disabilities. His fit throwing has

increased to the point now where I cannot redirect his energies at

all. When he has his " fits of rage " for lack of better terms, he

tries to hurt me or who ever is near by. Sometimes he doesn't even

know the person they are just walking by at the wrong time. He

grabs and throws what ever he can reach at that moment and does not

calm down until he is ready. I can not redirect his attention.

He also has " fits of orneriness " . When he seems in a good mood

but begins to pinch, pull hair, hit or has even been known to bite

and scratch out of pure Orneriness. He thinks it is funny. There

are times when he gets " out of control " hyper active. He spends

sometimes an hour or more obsessively climbing on chairs, rolling

around, trying to hang on me, throwing toys, trying to grab other

things to throw, and sometimes shake his head no till he's dizzy.

I have to let him wear down any kind of intervention seems to make

him more intense or I end up getting hurt. One day when I was on

the phone he was playing with sister (11) in the same room as I was

in, out of the blue he came up behind my chair, grabbed my hair and

pulled me down. I have no understanding why, except he may have

been frustrated that sissy would take him outside to play.

Meal times are very unhappy most of the time due to

never wanting to sit down. Also he throws food and dumps his drinks

on purpose the tries to eat and drink our dinner. Reminds me of

Helen Keller except I don't tolerate it. Although I do not know how

to really handle situations as this. We take his food away and tell

him he has to wait a while to eat. Then he still won't sit in the

living room while we eat he tries to get into stuff to get my

attention so I cannot enjoy my meal. Restaurants are a joke. My

mom took my grandma, my daughter, and I to dinner a Shari's

last Saturday. After about 5 min he then started standing up on the

seat and I had a hard time getting him to sit down, then He kept

trying to crawl out on the booth right over my lap. I took him

outside for a walk until our food came and then we went back into

eat. He would not sit down instead while I was trying to wrestle

him to sit down he was intentionally trying to put his feet on the

table to knock things over. I then told my mom to get my food to go

and bring it to the car where I put in his car seat, which

is always a struggle, and he watched me eat. Then I fed him 30 min

later.

has also started to wander off, getting more brave and

as the staple in his head will prove his behavior and I not knowing

how to handle it is getting us both hurt.

I watched a video today called " Day By Day Raising the child with

Autism/PDD by Joan F Goodman And Hoban. Although does

not have a diagnosis of Autism he has always exhibited some of the

challenging behaviors and I have always figured what works for

autism child is worth trying on any developmentally delayed child.

Any way the girl in this video does everything like . To the

tee. never acted unaware of people when he was little and

loves people, But he is non verbal and age 7 with a mentality in

some thing of a 3 year old. Also he is like having terrible 2s

times 10 right now. And transitions are horrible fits even getting

out of the car it seems. Even though he barely focuses on an

activity but bounces from one thing to another with no real intent

It is still hard to get him to do something that is not his idea.

It is true he act the worst with me his mother so no one believes

the way he acts.

If any one can offer advice on what I can do to try to cope with

these very aggressive behaviors I would appreciate your comments.

Thank you

[Guest guest]

----Original Message Follows----

From: " denisehumphrey2001 " <denisehumphrey2001@...>

" S Oliver " <sunah98@...>

Subject: Re: Help!!!

Date: Wed, 02 Aug 2006 22:24:36 -0000

Hi this is my first time posting but I hear stories like yours all

the time. I have a daughter with high funtioning PDD-NOS.

Has your child been tested by the local schools and developed an IEP?

I know the procedure varies from state to state, but that is a good

place to start. I would also suggest you might want to try the local

hospitial pediatric developmental medicine dept.

The fact that your child is 7 and non-verbal and having acting out

issues should be sending red flags everywhere for everyone, and I am

surprised the school has not said something earlier to you.Also his

pediatrician is not worried and ordered him to see a specialist is

also somewhat surprising to me.

With the rt ABA therapist the situation both verbally and

behaviorally can really improve, but the soomer you nip it in the bud

the happier everyone will be.

Since I don't know your state and the details of how much testing he

has had done I would start in either of those two places.

>

> ,

>

> It sounds like he exhibits major communication behaviors. Go to the

behavior

> analyst website and you can find a behavior analyst in your area to

work

> with him. I'd specifically want one who uses the analysis of verbal

> behavior. Not knowing where you live, I don't know if you are in a

state

> that provides services to kids with autism. Have you taken him to a

> developmental pediatrician or psychologist for an evaluation/dx?

You really

> need someone in to help you get on track, you're not going to be

able to do

> it alone. But there is help and things can get SO much better! One

thing you

> can try while you are doing the other things is sign language.

Start with

> one sign for something he really wants, show him he can get what he

wants

> without aggressive behaviors. I still believe you are going to have

to get

> professional help to really get a handle on all this, but if you

give him a

> way to communicate his needs, some should stop. Don't worry about

the sign

> being exact, the point is not for him to use it forever, just as a

start.

> And if he has other issues with gross/fine motor he won't be able

to make

> the signs perfectly. Again, not the concern, the concern is that he

can tell

> you or other caretakers what he needs/wants. My son started with

the sign

> for " on " to get a video turned on. Best of luck, please don't give

up, but

> DO get help.

>

>

>

>

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

> From: " chatthisway " <chatthisway@...>

>

> Subject: [ ] Help!!!

> Date: Tue, 01 Aug 2006 06:16:35 -0000

>

> is very strong and very strong willed seven year old with

> developmental delayes and wobbly gross motor. He is non verbal ans

> has a hard time mastering signs. Scary combo. Since cannot

> communicate well I can understand why he may behave frustrated

> like, But he is now way to difficult for me to handle. My

> daughter is ADHD so I know how one with ADHD acts, but of course

> also have developmental disabilities. His fit throwing has

> increased to the point now where I cannot redirect his energies at

> all. When he has his " fits of rage " for lack of better terms, he

> tries to hurt me or who ever is near by. Sometimes he doesn't even

> know the person they are just walking by at the wrong time. He

> grabs and throws what ever he can reach at that moment and does not

> calm down until he is ready. I can not redirect his attention.

>

> He also has " fits of orneriness " . When he seems in a good mood

> but begins to pinch, pull hair, hit or has even been known to bite

> and scratch out of pure Orneriness. He thinks it is funny. There

> are times when he gets " out of control " hyper active. He spends

> sometimes an hour or more obsessively climbing on chairs, rolling

> around, trying to hang on me, throwing toys, trying to grab other

> things to throw, and sometimes shake his head no till he's dizzy.

> I have to let him wear down any kind of intervention seems to make

> him more intense or I end up getting hurt. One day when I was on

> the phone he was playing with sister (11) in the same room as I was

> in, out of the blue he came up behind my chair, grabbed my hair and

> pulled me down. I have no understanding why, except he may have

> been frustrated that sissy would take him outside to play.

>

>

> Meal times are very unhappy most of the time due to

> never wanting to sit down. Also he throws food and dumps his drinks

> on purpose the tries to eat and drink our dinner. Reminds me of

> Helen Keller except I don't tolerate it. Although I do not know how

> to really handle situations as this. We take his food away and tell

> him he has to wait a while to eat. Then he still won't sit in the

> living room while we eat he tries to get into stuff to get my

> attention so I cannot enjoy my meal. Restaurants are a joke. My

> mom took my grandma, my daughter, and I to dinner a Shari's

> last Saturday. After about 5 min he then started standing up on the

> seat and I had a hard time getting him to sit down, then He kept

> trying to crawl out on the booth right over my lap. I took him

> outside for a walk until our food came and then we went back into

> eat. He would not sit down instead while I was trying to wrestle

> him to sit down he was intentionally trying to put his feet on the

> table to knock things over. I then told my mom to get my food to go

> and bring it to the car where I put in his car seat, which

> is always a struggle, and he watched me eat. Then I fed him 30 min

> later.

>

> has also started to wander off, getting more brave

and

> as the staple in his head will prove his behavior and I not knowing

> how to handle it is getting us both hurt.

>

> I watched a video today called " Day By Day Raising the child with

> Autism/PDD by Joan F Goodman And Hoban. Although does

> not have a diagnosis of Autism he has always exhibited some of the

> challenging behaviors and I have always figured what works for

> autism child is worth trying on any developmentally delayed child.

> Any way the girl in this video does everything like . To the

> tee. never acted unaware of people when he was little and

> loves people, But he is non verbal and age 7 with a mentality in

> some thing of a 3 year old. Also he is like having terrible 2s

> times 10 right now. And transitions are horrible fits even getting

> out of the car it seems. Even though he barely focuses on an

> activity but bounces from one thing to another with no real intent

> It is still hard to get him to do something that is not his idea.

> It is true he act the worst with me his mother so no one believes

> the way he acts.

>

> If any one can offer advice on what I can do to try to cope with

> these very aggressive behaviors I would appreciate your comments.

>

> Thank you

>

>

>

>

[Guest guest]

Les,

Do you have any back or hip pain? Any rashes (e.g., psoriasis)?

It's good that you are going for a second opinion. You should mention the

irritable bowel issue to both rheumatologists.

Not an MD

[ ] help!!!

> Hi Everyone,

>

> Well I had my rheumy appt. today. I was originally to see the nurse

> practitioner, but since they ran a lot of blood tests, the doctor had

> to do some explaining.

>

> Here's the thing...A year ago when I had my tests run for my 1st appt.

> ever with the rheumy, she said that my tests suggest RA. Today, my

> test results are basically normal with only my complement component

> c3c being slightly elevated. Basically, the range is 90 to 180 and my

> reading is 191. A year ago it was 190, so basically no change. My

> CH50 a year ago was low at 20 and today it was 35 and the range is

> 31-66. Everything else was normal or negative for all sorts of

> rheumatic diseases.

>

> So, even though I have joint stiffness, and pain with no swelling, the

> doctor is thinking that I may have undifferentiated

> spondylarthropathy. She says I follow the A-typical pattern for

> rheumatoid arthritis. I've read a little about it and the only

> correllation that I see for symptoms is that I have a non diagnosed

> bowel problem. years ago, I was told that I have irritable bowel

> syndrome, but never had difinitive tests to prove it. I just have

> learned to deal and work around it's issues. I've never even told my

> rheumy about it. I just saw that inflamitory bowel syndrome is a

> symptom of Udifferentiated spondylarthropathy.

>

> I'm so confused.

>

> I have made an appt. to see another rheumatologist for a 2nd opinion

> and will bring all my blood test results from the last year and have

> the new doctor compare and see what he says.

>

> In the meantime, I need to hear your thoughts and opinions on this.

>

> Thanks,

>

> Les

[Guest guest]

--- Hi ,

I have tail bone pain, and severe hip pain. No rashes or psoriasis.

Thanks,

Les

>

> Les,

>

> Do you have any back or hip pain? Any rashes (e.g., psoriasis)?

>

> It's good that you are going for a second opinion. You should

mention the

> irritable bowel issue to both rheumatologists.

>

>

>

> Not an MD

>

>

> [ ] help!!!

>

>

> > Hi Everyone,

> >

> > Well I had my rheumy appt. today. I was originally to see the nurse

> > practitioner, but since they ran a lot of blood tests, the doctor had

> > to do some explaining.

> >

> > Here's the thing...A year ago when I had my tests run for my 1st appt.

> > ever with the rheumy, she said that my tests suggest RA. Today, my

> > test results are basically normal with only my complement component

> > c3c being slightly elevated. Basically, the range is 90 to 180 and my

> > reading is 191. A year ago it was 190, so basically no change. My

> > CH50 a year ago was low at 20 and today it was 35 and the range is

> > 31-66. Everything else was normal or negative for all sorts of

> > rheumatic diseases.

> >

> > So, even though I have joint stiffness, and pain with no swelling, the

> > doctor is thinking that I may have undifferentiated

> > spondylarthropathy. She says I follow the A-typical pattern for

> > rheumatoid arthritis. I've read a little about it and the only

> > correllation that I see for symptoms is that I have a non diagnosed

> > bowel problem. years ago, I was told that I have irritable bowel

> > syndrome, but never had difinitive tests to prove it. I just have

> > learned to deal and work around it's issues. I've never even told my

> > rheumy about it. I just saw that inflamitory bowel syndrome is a

> > symptom of Udifferentiated spondylarthropathy.

> >

> > I'm so confused.

> >

> > I have made an appt. to see another rheumatologist for a 2nd opinion

> > and will bring all my blood test results from the last year and have

> > the new doctor compare and see what he says.

> >

> > In the meantime, I need to hear your thoughts and opinions on this.

> >

> > Thanks,

> >

> > Les

>

[Guest guest]

oh my gosh no wonder i didn't understand the reading thanx tracey for

pointing it out

the readings are actually..

wbc7.3

rbc 3.39

hgb10.6

hct31.1

neutrophils 70.4

lymphosytes 18.1

does that make more sence??

aliza yaffa gutierrez medina

**************Feeling the pinch at the grocery store? Make meals for Under

$10. (http://food.aol.com/frugal-feasts?ncid=emlcntusfood00000002)