Re: Don't know what my son has

[Guest guest]

I would take him to a neurodevelopmental pediatrician with a detailed

history of everything from pregnancy to now in hand. I would ask the dr.

if food allergies, meds for the unnamed condition, etc. could be behind

this. I would also read all you can on malabsorption. It sounds like

dyspraxia because it sounds like he is trying to talk and may in fact be

talking but can't get it out. I would keep the therapy as is for now

until you get more info. but I would get all the info. you can on

dyspraxia, take the dyspraxia checklist, and read The Late Talker the

politely but firmly run it by the drs and the therapists because far too

often you have to help them make the diagnosis if it is truly apraxia.

What is the OT, PT and floor time for?

sillies1023 wrote:

>Hi everyone,

>

>Well, I have been following the board, but it's about time that I take

>some kind of an action. My 2 yr old has been getting the speech,

>occupational, physical therapy, and soon floor time. Yet, they have no

>diagnosis for him. I don't know and neither do they if it is just

>delay or what. I don't see the speech therapy helping at all. It has

>been about 2 months and nothing yet. He tries to talk, he actually

>tires very hard, but only babbling. When I count to 5 using my

>fingers, he will try it too and just make some strange sounds instead

>of saying the numbers. He plays really nice, perfect eye contact, very

>loving and affectionate. I " m just really confused and don't know what

>I can do to help him. Do I just wait and see what happens with the

>speech, or should I try a new person. I " m also not sure if I should

>take him to a neurologist? He is not able to take any of the

>supplements due to another major health issue. How do I find out

>exactly what he has?

>

>Thanks a bunch

>

>

>

>

[Guest guest]

My son has been in speech therapy for 18 mos. He still cannot talk

but he approximates so well sometimes even strangers understand him.

Speech therapy is not a quick fix for the apraxic child.

We have been to a specialist pediatrician, neurologist, metabolic

geneticist, the Shriner's, ENTs, and no one can give us a diagnosis.

Obviously my son has something but not enough to fit anything. I

empathize with your frustration.

>

> Hi everyone,

>

> Well, I have been following the board, but it's about time that I

take

> some kind of an action. My 2 yr old has been getting the speech,

> occupational, physical therapy, and soon floor time. Yet, they

have no

> diagnosis for him. I don't know and neither do they if it is just

> delay or what. I don't see the speech therapy helping at all. It

has

> been about 2 months and nothing yet. He tries to talk, he actually

> tires very hard, but only babbling. When I count to 5 using my

> fingers, he will try it too and just make some strange sounds

instead

> of saying the numbers. He plays really nice, perfect eye contact,

very

> loving and affectionate. I " m just really confused and don't know

what

> I can do to help him. Do I just wait and see what happens with the

> speech, or should I try a new person. I " m also not sure if I

should

> take him to a neurologist? He is not able to take any of the

> supplements due to another major health issue. How do I find out

> exactly what he has?

>

> Thanks a bunch

>

[Guest guest]

Does your child point, and bring things to show you? What about

pretend play?

If you haven't tried carnaware, I recommend it. It really jump-started

my daughter's language when she was 2 (after months of unproductive

speech therapy). ABA also helped her significantly - she had a mild

ASD diagnosis as well as apraxia(I don't believe that ABA is harmful

as long as your have a qualified provider who structures the program

to meet your child's needs, but you can read past threads - some

disagree). Normal speech therapy lacks the intensity which some kids

need to make progress.

good luck,

>

> Hi everyone,

>

> Well, I have been following the board, but it's about time that I take

> some kind of an action. My 2 yr old has been getting the speech,

> occupational, physical therapy, and soon floor time. Yet, they have no

> diagnosis for him. I don't know and neither do they if it is just

> delay or what. I don't see the speech therapy helping at all. It has

> been about 2 months and nothing yet. He tries to talk, he actually

> tires very hard, but only babbling. When I count to 5 using my

> fingers, he will try it too and just make some strange sounds instead

> of saying the numbers. He plays really nice, perfect eye contact, very

> loving and affectionate. I " m just really confused and don't know what

> I can do to help him. Do I just wait and see what happens with the

> speech, or should I try a new person. I " m also not sure if I should

> take him to a neurologist? He is not able to take any of the

> supplements due to another major health issue. How do I find out

> exactly what he has?

>

> Thanks a bunch

>

[Guest guest]

I can empathize as well, but it sounds like your kids are even

further than my daughter who is almost 21 months and still not

talking...she has only started babbling again in the last month with

a switch to a different speech therapist. We too have been to a ton

of different doctors with no known cause for her low muscle tone and

lack of speech. She also has high calcium which no one has been able

to come up with a reason for that either. All of her testings

genetically, metabolically (other than calcium that is), hearing, etc

have come back fine and within normal limits....We did start her on

the supplements and that seems to have helped a little, but we do not

know if it is coincident with the switch of therapists (she also gets

o/t and p/t with s/t) or what, but we are afraid to take her off of

them for fear she will go backwards again. If anyone has suggestions-

we too are interested...

Debbie

> >

> > Hi everyone,

> >

> > Well, I have been following the board, but it's about time that I

> take

> > some kind of an action. My 2 yr old has been getting the speech,

> > occupational, physical therapy, and soon floor time. Yet, they

> have no

> > diagnosis for him. I don't know and neither do they if it is

just

> > delay or what. I don't see the speech therapy helping at all.

It

> has

> > been about 2 months and nothing yet. He tries to talk, he

actually

> > tires very hard, but only babbling. When I count to 5 using my

> > fingers, he will try it too and just make some strange sounds

> instead

> > of saying the numbers. He plays really nice, perfect eye

contact,

> very

> > loving and affectionate. I " m just really confused and don't know

> what

> > I can do to help him. Do I just wait and see what happens with

the

> > speech, or should I try a new person. I " m also not sure if I

> should

> > take him to a neurologist? He is not able to take any of the

> > supplements due to another major health issue. How do I find out

> > exactly what he has?

> >

> > Thanks a bunch

> >

>

[Guest guest]

I have not tried carnaware and don't know what ABA is.

My son also was diagnosed with Leukemia 3 months ago

and is undergoing intense chemotherapy. So the

doctors told us we can't give him any supplements. I

just don't know which one to worry over.

--- maryebe <eberlein@...> wrote:

> Does your child point, and bring things to show you?

> What about

> pretend play?

>

> If you haven't tried carnaware, I recommend it. It

> really jump-started

> my daughter's language when she was 2 (after months

> of unproductive

> speech therapy). ABA also helped her significantly -

> she had a mild

> ASD diagnosis as well as apraxia(I don't believe

> that ABA is harmful

> as long as your have a qualified provider who

> structures the program

> to meet your child's needs, but you can read past

> threads - some

> disagree). Normal speech therapy lacks the intensity

> which some kids

> need to make progress.

>

> good luck,

>

>

>

> >

> > Hi everyone,

> >

> > Well, I have been following the board, but it's

> about time that I take

> > some kind of an action. My 2 yr old has been

> getting the speech,

> > occupational, physical therapy, and soon floor

> time. Yet, they have no

> > diagnosis for him. I don't know and neither do

> they if it is just

> > delay or what. I don't see the speech therapy

> helping at all. It has

> > been about 2 months and nothing yet. He tries to

> talk, he actually

> > tires very hard, but only babbling. When I count

> to 5 using my

> > fingers, he will try it too and just make some

> strange sounds instead

> > of saying the numbers. He plays really nice,

> perfect eye contact, very

> > loving and affectionate. I " m just really confused

> and don't know what

> > I can do to help him. Do I just wait and see what

> happens with the

> > speech, or should I try a new person. I " m also

> not sure if I should

> > take him to a neurologist? He is not able to take

> any of the

> > supplements due to another major health issue.

> How do I find out

> > exactly what he has?

> >

> > Thanks a bunch

> >

>

>

>

________________________________________________________________________________\

____

Need Mail bonding?

Go to the Q & A for great tips from Answers users.

http://answers./dir/?link=list & sid=396546091

[Guest guest]

Dear Liz,

has leukemia. They told us the drugs will for

sure affect his development. But he was already

diagnosed from the regional center before his

diagnosis for leukemia. They told us he needs

physical and occupational therapy, for gross motor

skills.

You mentioned dyspraxia, I will look up more

information about that. As I was writing this email,

our doctor from UCLA called and he has set up an

appointment for us to have my son evaluated by really

good specialists at UCLA. And if needed he said than

we will see the neurodevelopmental pediatrician.

--- Liz <lizlaw@...> wrote:

> I would take him to a neurodevelopmental

> pediatrician with a detailed

> history of everything from pregnancy to now in hand.

> I would ask the dr.

> if food allergies, meds for the unnamed condition,

> etc. could be behind

> this. I would also read all you can on

> malabsorption. It sounds like

> dyspraxia because it sounds like he is trying to

> talk and may in fact be

> talking but can't get it out. I would keep the

> therapy as is for now

> until you get more info. but I would get all the

> info. you can on

> dyspraxia, take the dyspraxia checklist, and read

> The Late Talker the

> politely but firmly run it by the drs and the

> therapists because far too

> often you have to help them make the diagnosis if it

> is truly apraxia.

> What is the OT, PT and floor time for?

>

> sillies1023 wrote:

>

> >Hi everyone,

> >

> >Well, I have been following the board, but it's

> about time that I take

> >some kind of an action. My 2 yr old has been

> getting the speech,

> >occupational, physical therapy, and soon floor

> time. Yet, they have no

> >diagnosis for him. I don't know and neither do

> they if it is just

> >delay or what. I don't see the speech therapy

> helping at all. It has

> >been about 2 months and nothing yet. He tries to

> talk, he actually

> >tires very hard, but only babbling. When I count

> to 5 using my

> >fingers, he will try it too and just make some

> strange sounds instead

> >of saying the numbers. He plays really nice,

> perfect eye contact, very

> >loving and affectionate. I " m just really confused

> and don't know what

> >I can do to help him. Do I just wait and see what

> happens with the

> >speech, or should I try a new person. I " m also not

> sure if I should

> >take him to a neurologist? He is not able to take

> any of the

> >supplements due to another major health issue. How

> do I find out

> >exactly what he has?

> >

> >Thanks a bunch

> >

> >

> >

> >

[Guest guest]

You are in my thoughts and prayers. Do not give up on that boy! We want

to hear from him!

Skarlet B. wrote:

>Dear Liz,

>

> has leukemia. They told us the drugs will for

>sure affect his development. But he was already

>diagnosed from the regional center before his

>diagnosis for leukemia. They told us he needs

>physical and occupational therapy, for gross motor

>skills.

>

>You mentioned dyspraxia, I will look up more

>information about that. As I was writing this email,

>our doctor from UCLA called and he has set up an

>appointment for us to have my son evaluated by really

>good specialists at UCLA. And if needed he said than

>we will see the neurodevelopmental pediatrician.

>

>

[Guest guest]

While I can only imagine your fear I want to give you hope. My son's

former DI had a daughter, was 2 and 2 months who did not have many

words and then got belly cancer (it is the " best " kind to get with a

98% full recovery rate). After the treatment she went down to 9 words.

The drugs that kept her alive took her speech, which was limited as it

was. Mom put her in EI and supplemetal speech therapy once per week, and

then refused the integrated preschool and stuck with speech. That little

girl is cancer free, almost 4, and talking up a storm. I don't know your

kid, am not an expert of any kind but I believe he can talk, just help

him beat that leukemia first. You both can do this!

Skarlet B. wrote:

>Dear Liz,

>

> has leukemia. They told us the drugs will for

>sure affect his development. But he was already

>diagnosed from the regional center before his

>diagnosis for leukemia. They told us he needs

>physical and occupational therapy, for gross motor

>skills.

>

>You mentioned dyspraxia, I will look up more

>information about that. As I was writing this email,

>our doctor from UCLA called and he has set up an

>appointment for us to have my son evaluated by really

>good specialists at UCLA. And if needed he said than

>we will see the neurodevelopmental pediatrician.

>

>

[Guest guest]

I would try a developmental evaluation.

And also big hugs to you & your family. I will keep your little one

in my thoughts & prayers.

-- In , " Skarlet B. "

<sillies1023@...> wrote:

>

> I have not tried carnaware and don't know what ABA is.

> My son also was diagnosed with Leukemia 3 months ago

> and is undergoing intense chemotherapy. So the

> doctors told us we can't give him any supplements. I

> just don't know which one to worry over.

> --- maryebe <eberlein@...> wrote:

>

> > Does your child point, and bring things to show you?

> > What about

> > pretend play?

> >

> > If you haven't tried carnaware, I recommend it. It

> > really jump-started

> > my daughter's language when she was 2 (after months

> > of unproductive

> > speech therapy). ABA also helped her significantly -

> > she had a mild

> > ASD diagnosis as well as apraxia(I don't believe

> > that ABA is harmful

> > as long as your have a qualified provider who

> > structures the program

> > to meet your child's needs, but you can read past

> > threads - some

> > disagree). Normal speech therapy lacks the intensity

> > which some kids

> > need to make progress.

> >

> > good luck,

> >

> >

> >

> > >

> > > Hi everyone,

> > >

> > > Well, I have been following the board, but it's

> > about time that I take

> > > some kind of an action. My 2 yr old has been

> > getting the speech,

> > > occupational, physical therapy, and soon floor

> > time. Yet, they have no

> > > diagnosis for him. I don't know and neither do

> > they if it is just

> > > delay or what. I don't see the speech therapy

> > helping at all. It has

> > > been about 2 months and nothing yet. He tries to

> > talk, he actually

> > > tires very hard, but only babbling. When I count

> > to 5 using my

> > > fingers, he will try it too and just make some

> > strange sounds instead

> > > of saying the numbers. He plays really nice,

> > perfect eye contact, very

> > > loving and affectionate. I " m just really confused

> > and don't know what

> > > I can do to help him. Do I just wait and see what

> > happens with the

> > > speech, or should I try a new person. I " m also

> > not sure if I should

> > > take him to a neurologist? He is not able to take

> > any of the

> > > supplements due to another major health issue.

> > How do I find out

> > > exactly what he has?

> > >

> > > Thanks a bunch

> > >

> >

> >

> >

>

>

>

>

>

>

________________________________________________________________________________\

____

> Need Mail bonding?

> Go to the Q & A for great tips from Answers users.

> http://answers./dir/?link=list & sid=396546091

>

[Guest guest]

I used to work in Pediatric Hematology Oncology. The

chemotherapeutic drugs used to treat leukemia cause neurocognitive

deficits. Boys are affected a bit more than girls and the younger

the child is when he/she is being treated, the higher the risk. That

said, most of the kids in our practice did great. There were only a

few (few as in less than 5 or 6) that I could see any real deficit

and I don't think the general public would have noticed. Of those

kids I am 99.9% sure that 2 of those kids had learning disabilities

prior to ever developing leukemia.

When I was in graduate school I did a comprehensive literature review

on this topic. At that time (1999-2000) the literature and research

available was stating that although the deficits could occur in many

areas, computation and spatial relationships were the ones most often

affected. Reading skills were frequently behind in the elementary

years but there was no way to tell if that was because of the

treatment or if it was because of the amount of time the child missed

from school.

We used to get a baseline neuropsych eval on the kids (if at all

possible... often it wasn't due to insurance issues) and then have

them re-eval'd 1 to 2 times a year. Usually just once. After kids

finished treatment we had neuropsych evals on their protocol as they

would come in for checkups a few times a year. Those kids rarely got

their evals. Their parents usually just didn't see the need. This

used to frustrate me but I guess if you had your kid just spend 5

years to overcome a life threatening illness that reading scores

kinda paled in comparison.

Kris

The Knitting Wannabe http://knittingwannabe.typepad.com

Sonny & Shear: The I’ve Got Ewe, Babe Yarn Shop

http://www.sonnyandshear.com

On Jun 28, 2007, at 11:17 AM, Skarlet B. wrote:

> Dear Liz,

>

> has leukemia. They told us the drugs will for

> sure affect his development. But he was already

> diagnosed from the regional center before his

> diagnosis for leukemia. They told us he needs

> physical and occupational therapy, for gross motor

> skills.

>

> You mentioned dyspraxia, I will look up more

> information about that. As I was writing this email,

> our doctor from UCLA called and he has set up an

> appointment for us to have my son evaluated by really

> good specialists at UCLA. And if needed he said than

> we will see the neurodevelopmental pediatrician.

>

> --- Liz <lizlaw@...> wrote:

>

> > I would take him to a neurodevelopmental

> > pediatrician with a detailed

> > history of everything from pregnancy to now in hand.

> > I would ask the dr.

> > if food allergies, meds for the unnamed condition,

> > etc. could be behind

> > this. I would also read all you can on

> > malabsorption. It sounds like

> > dyspraxia because it sounds like he is trying to

> > talk and may in fact be

> > talking but can't get it out. I would keep the

> > therapy as is for now

> > until you get more info. but I would get all the

> > info. you can on

> > dyspraxia, take the dyspraxia checklist, and read

> > The Late Talker the

> > politely but firmly run it by the drs and the

> > therapists because far too

> > often you have to help them make the diagnosis if it

> > is truly apraxia.

> > What is the OT, PT and floor time for?

> >

> > sillies1023 wrote:

> >

> > >Hi everyone,

> > >

> > >Well, I have been following the board, but it's

> > about time that I take

> > >some kind of an action. My 2 yr old has been

> > getting the speech,

> > >occupational, physical therapy, and soon floor

> > time. Yet, they have no

> > >diagnosis for him. I don't know and neither do

> > they if it is just

> > >delay or what. I don't see the speech therapy

> > helping at all. It has

> > >been about 2 months and nothing yet. He tries to

> > talk, he actually

> > >tires very hard, but only babbling. When I count

> > to 5 using my

> > >fingers, he will try it too and just make some

> > strange sounds instead

> > >of saying the numbers. He plays really nice,

> > perfect eye contact, very

> > >loving and affectionate. I " m just really confused

> > and don't know what

> > >I can do to help him. Do I just wait and see what

> > happens with the

> > >speech, or should I try a new person. I " m also not

> > sure if I should

> > >take him to a neurologist? He is not able to take

> > any of the

> > >supplements due to another major health issue. How

> > do I find out

> > >exactly what he has?

> > >

> > >Thanks a bunch

> > >

> > >

> > >

> > >

[Guest guest]

Thank you so much everyone for all the support. It's really nice.

Liz <lizlaw@...> wrote: While I can only imagine your

fear I want to give you hope. My son's

former DI had a daughter, was 2 and 2 months who did not have many

words and then got belly cancer (it is the " best " kind to get with a

98% full recovery rate). After the treatment she went down to 9 words.

The drugs that kept her alive took her speech, which was limited as it

was. Mom put her in EI and supplemetal speech therapy once per week, and

then refused the integrated preschool and stuck with speech. That little

girl is cancer free, almost 4, and talking up a storm. I don't know your

kid, am not an expert of any kind but I believe he can talk, just help

him beat that leukemia first. You both can do this!

Skarlet B. wrote:

>Dear Liz,

>

> has leukemia. They told us the drugs will for

>sure affect his development. But he was already

>diagnosed from the regional center before his

>diagnosis for leukemia. They told us he needs

>physical and occupational therapy, for gross motor

>skills.

>

>You mentioned dyspraxia, I will look up more

>information about that. As I was writing this email,

>our doctor from UCLA called and he has set up an

>appointment for us to have my son evaluated by really

>good specialists at UCLA. And if needed he said than

>we will see the neurodevelopmental pediatrician.

>

>

---------------------------------

Sick sense of humor? Visit TV's Comedy with an Edge to see what's on,

when.

[Guest guest]

Skarlet I agree with Liz -just help him beat that leukemia first!

About the late speech -sounds like he's got lots on his plate

already -but if you want more on late talking -don't go the ABA route

until you know the diagnosis. If there is a reason he can't talk

such as apraxia -he'll require therapies to help with his motor

planning/strength. ABA is a type of behavioral therapy which is most

appropriate for autism or behavioral disorders.

If no progress in a month or so -

go for a change.

No diagnosis/ wrong diagnosis can both lead to therapy that is not appropriate.

And if it's not the therapy -may even be the therapist. Try

another therapy -and then still if no change - another therapist

(perhaps by one recommended here)

There are numerous reasons why a child is not able to talk ranging

from a simple developmental delay -the most common. 75% of late

talkers are in this category and this needs to be ruled out. On the

other end of reasons for not talking you would have impairments.

One of the impairments is apraxia -the one my son Tanner has - which

would be a more complex multifaceted motor planning disorder. Most

apraxic children in this group and we have thousands represented

here -end up mainstreamed in both school and life because apraxia

doesn't affect the child's cognitive ability -nor social skills.

Like your child -they want to talk -they just need help.

I can tell you from personal experience with my own son Tanner at 2

years old that traditional speech therapy done by someone not

knowledgeable about apraxia did absolutely nothing for him either.

It ended up that Tanner was diagnosed with apraxia a few months

later -and we found a therapist that knew how to help Tanner. One of

them - Zimet CCC SLP is part of this group and with EI in

Georgia. Once receiving motor planning and strengthening speech

therapies he started to finally surge (Tanner also has some co

existing weakness with the apraxia which is not unusual)

Once diagnosed with apraxia we started EFAs too which were amazing.

So in your son's case perhaps it's the medication...but then just

seek ways to reduce his frustration during this time -with simple

sign etc. (have you read The Late Talker book?)

Oh -and PS -apraxia/dyspraxia are used interchangeably in the US

Below are some other resources to help

Are there any soft signs?

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

Here is some online info on late talking:

http://www.cherab.org/information/latetalkerhandout.html

http://www.speechville.com/diagnosis-destinations/latetalker/late-talker.html

Here's an article written by Neurodevelopmental Pediatrician Dr.

Marilyn Agin that was featured as a cover article in Contemporary

Pediatrics -a trade magazine for hundreds of thousands of pediatric

medical professionals across the US. (I wrote the parent guide)

" The " late talker " —when silence isn't golden

Not all children with delayed speech are " little Einstein's " or

garden variety " late bloomers. " Some have a speech-language disorder

that will persist unless warning signs are recognized and

intervention comes early. Includes a Guide for Parents. "

Cover feature article by Late Talker co-author Marilyn Agin MD

http://www.contemporarypediatrics.com/contpeds/article/articleDetail.jsp?id=1327\

20

Parent guide of article by Late Talker co-author

[Guest guest]

Thank you so much for all the inforamtion. I really want to start him on the

Vitamin E and he was taking Omega, but his doctors don't want him to take that

anymore. I will ask them again to look into it and let me know for sure. I

know my first priority is the fight the leukemia, but at the same time I want to

do whatever I can to help him with his speech. His oncologist scheduled a

meeting with a pediatric psycologist at UCLA on June 6th. Any advice on the

specific questions to ask. Between all the hospital visits and dealing with the

chemo, fighting with insurance companies daily, dealing with my 4 year old, I

just don't know what to do anymore...

kiddietalk <kiddietalk@...> wrote: Skarlet I agree with Liz -just

help him beat that leukemia first!

About the late speech -sounds like he's got lots on his plate

already -but if you want more on late talking -don't go the ABA route

until you know the diagnosis. If there is a reason he can't talk

such as apraxia -he'll require therapies to help with his motor

planning/strength. ABA is a type of behavioral therapy which is most

appropriate for autism or behavioral disorders.

If no progress in a month or so -

go for a change.

No diagnosis/ wrong diagnosis can both lead to therapy that is not appropriate.

And if it's not the therapy -may even be the therapist. Try

another therapy -and then still if no change - another therapist

(perhaps by one recommended here)

There are numerous reasons why a child is not able to talk ranging

from a simple developmental delay -the most common. 75% of late

talkers are in this category and this needs to be ruled out. On the

other end of reasons for not talking you would have impairments.

One of the impairments is apraxia -the one my son Tanner has - which

would be a more complex multifaceted motor planning disorder. Most

apraxic children in this group and we have thousands represented

here -end up mainstreamed in both school and life because apraxia

doesn't affect the child's cognitive ability -nor social skills.

Like your child -they want to talk -they just need help.

I can tell you from personal experience with my own son Tanner at 2

years old that traditional speech therapy done by someone not

knowledgeable about apraxia did absolutely nothing for him either.

It ended up that Tanner was diagnosed with apraxia a few months

later -and we found a therapist that knew how to help Tanner. One of

them - Zimet CCC SLP is part of this group and with EI in

Georgia. Once receiving motor planning and strengthening speech

therapies he started to finally surge (Tanner also has some co

existing weakness with the apraxia which is not unusual)

Once diagnosed with apraxia we started EFAs too which were amazing.

So in your son's case perhaps it's the medication...but then just

seek ways to reduce his frustration during this time -with simple

sign etc. (have you read The Late Talker book?)

Oh -and PS -apraxia/dyspraxia are used interchangeably in the US

Below are some other resources to help

Are there any soft signs?

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

Here is some online info on late talking:

http://www.cherab.org/information/latetalkerhandout.html

http://www.speechville.com/diagnosis-destinations/latetalker/late-talker.html

Here's an article written by Neurodevelopmental Pediatrician Dr.

Marilyn Agin that was featured as a cover article in Contemporary

Pediatrics -a trade magazine for hundreds of thousands of pediatric

medical professionals across the US. (I wrote the parent guide)

" The " late talker " —when silence isn't golden

Not all children with delayed speech are " little Einstein's " or

garden variety " late bloomers. " Some have a speech-language disorder

that will persist unless warning signs are recognized and

intervention comes early. Includes a Guide for Parents. "

Cover feature article by Late Talker co-author Marilyn Agin MD

http://www.contemporarypediatrics.com/contpeds/article/articleDetail.jsp?id=1327\

20

Parent guide of article by Late Talker co-author

[Guest guest]

One thing you could do: one of my son's therapists had a dad with lung

cancer. He was given 5 years to live. He went to the Atkins Clinic in NY

(yes, the diet folks but there is more to this clinic than that). They

gave him IV vitamins to boost his immune system and some medicine from

Germany (she tells me Germany is ahead of us in fighting cancer).

Anyway, I am not saying to stop current treatment or anything like that.

Those decisions are yours as is that son of yours and if I have learned

anything from this fight it is that we were given the children only we

know how to protect best so your judgment on his treatment is the only

judgment to use. I think this guy either skipped conventional treatment

or did it first. That is not the point. The point is you could call

there and ask if they could give you resources to review as to how to

build up the immune system during and after conventional treatment as I

am sure they deal with that too. As an aside, the guy lived 16 years,

not the 5 they gave him.

Lastly, there is a clinic, not sure of the name of it, in Manhattan, run

by Leo Galland, MD. It is a place where people go when their regular

doctors are stumped. Often he deals with gut stuff in adults and traces

problems back to birth and childhood. He is also really into immunity

and even wrote a book about creating superimmunity for kids. That clinic

may be of some use to you in reasearching and/or treating the immune

component of this and having an MD to help you work with the leukemia

doctors may help you get further faster. I am not sure where you are but

I am sure if you are no where near NY you can do this stuff via

phone/net. Alternative situations require alternative solutions.

Here is Dr. Galland's clinic info: http://mdheal.org/

I think this isthe Atkins thing but I am less familiar with that:

http://www.cancure.org/dr_atkins_clinic.htm

Hang in there! You can do this!

Liz

Skarlet B. wrote:

>Thank you so much for all the inforamtion. I really want to start him on the

Vitamin E and he was taking Omega, but his doctors don't want him to take that

anymore. I will ask them again to look into it and let me know for sure. I

know my first priority is the fight the leukemia, but at the same time I want to

do whatever I can to help him with his speech. His oncologist scheduled a

meeting with a pediatric psycologist at UCLA on June 6th. Any advice on the

specific questions to ask. Between all the hospital visits and dealing with the

chemo, fighting with insurance companies daily, dealing with my 4 year old, I

just don't know what to do anymore...

>

>kiddietalk <kiddietalk@...> wrote: Skarlet I agree with Liz

-just help him beat that leukemia first!

>

>About the late speech -sounds like he's got lots on his plate

>already -but if you want more on late talking -don't go the ABA route

>until you know the diagnosis. If there is a reason he can't talk

>such as apraxia -he'll require therapies to help with his motor

>planning/strength. ABA is a type of behavioral therapy which is most

>appropriate for autism or behavioral disorders.

>

>If no progress in a month or so -

>go for a change.

>No diagnosis/ wrong diagnosis can both lead to therapy that is not appropriate.

And if it's not the therapy -may even be the therapist. Try

>another therapy -and then still if no change - another therapist

>(perhaps by one recommended here)

>

>There are numerous reasons why a child is not able to talk ranging

>from a simple developmental delay -the most common. 75% of late

>talkers are in this category and this needs to be ruled out. On the

>other end of reasons for not talking you would have impairments.

>One of the impairments is apraxia -the one my son Tanner has - which

>would be a more complex multifaceted motor planning disorder. Most

>apraxic children in this group and we have thousands represented

>here -end up mainstreamed in both school and life because apraxia

>doesn't affect the child's cognitive ability -nor social skills.

>Like your child -they want to talk -they just need help.

>

>I can tell you from personal experience with my own son Tanner at 2

>years old that traditional speech therapy done by someone not

>knowledgeable about apraxia did absolutely nothing for him either.

>It ended up that Tanner was diagnosed with apraxia a few months

>later -and we found a therapist that knew how to help Tanner. One of

>them - Zimet CCC SLP is part of this group and with EI in

>Georgia. Once receiving motor planning and strengthening speech

>therapies he started to finally surge (Tanner also has some co

>existing weakness with the apraxia which is not unusual)

>Once diagnosed with apraxia we started EFAs too which were amazing.

>

>So in your son's case perhaps it's the medication...but then just

>seek ways to reduce his frustration during this time -with simple

>sign etc. (have you read The Late Talker book?)

>

>Oh -and PS -apraxia/dyspraxia are used interchangeably in the US

>

>Below are some other resources to help

>

>Are there any soft signs?

>http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

>

>Here is some online info on late talking:

>http://www.cherab.org/information/latetalkerhandout.html

>http://www.speechville.com/diagnosis-destinations/latetalker/late-talker.html

>

>Here's an article written by Neurodevelopmental Pediatrician Dr.

>Marilyn Agin that was featured as a cover article in Contemporary

>Pediatrics -a trade magazine for hundreds of thousands of pediatric

>medical professionals across the US. (I wrote the parent guide)

>

> " The " late talker " —when silence isn't golden

>Not all children with delayed speech are " little Einstein's " or

>garden variety " late bloomers. " Some have a speech-language disorder

>that will persist unless warning signs are recognized and

>intervention comes early. Includes a Guide for Parents. "

>

>Cover feature article by Late Talker co-author Marilyn Agin MD

>http://www.contemporarypediatrics.com/contpeds/article/articleDetail.jsp?id=132\

720

>Parent guide of article by Late Talker co-author