Re: New diagnosis (autism spectrum?) and 2 questions (Long)

October 3, 2010

Go get an SLP eval-one who is expert in apraxia and treats it in her practice.

if apraxia--you need specific motor planning speech disorder--3-5 sessions per

week--as per ASHA--docs do NOT know speech language disorders and your child has

not time to wait for this one to get her act together. if he has apraxia

characteristics he needs motor planning speech therapy NOW--not when the doctor

finally decides it might be apraxia.. Diagnosis are given at the time of the

eval--at this age yes they can be temporary--what matters is that the child

receive early and I mean EARLY--not the " when i finally figure it out " --type of

intervention.

So find a good SLP who treats apraxia--she'll know if the symptoms fit that

diagnosis and if they do she will not hesitate to give the diagnosis--all that

matters is the early intervention NOW. If it changes--all the better--these

diagnosis are NOT meant to be written in stone----they are for children who do

go on to develop, their body/brain changes and they can make spectacular

improvements given the right approaches--therapy and metabolic/diet supplement

interventions All neurological disorders in the young and old have a metabolic

component to them--but doctors do not learn this in school. unfortunately --they

have to seek out these specialties later and many do-- but you have to find

these enlightened professionals who are not afraid to think outside the box and

try to do the best for their patients--not just follow guidelines blindly.

If your child does have apraxia according to the SLP--go back to the doctor and

ask her to put her medical seal on that diagnosis--doctors do not typically

diagnose these speech disorders--unless very knowledgeable--which most are not.

It is the domain of the SLP. So if a good experienced SLP says apraxia--the

decent thing to do --what most doctors will do is put their seal on it for

insurance coverage so treatment can begin and appropriate services as well.

Just keep in mind that roughly 40--50% of ASD kids do have some motor planning

component to their speech disorder--even if most do not get diagnosed with

apraxia because everyone focuses on their ASD--and --yes, it comes with speech

disorders. however--if apraxic all kids--ASD or not need motor planning therapy

to make progress with their speech.

You will also notice the tremendous overlap between ASD and apraxia with

behavior isues, focus, sensory issues, toe walking, low tone--especially upper

trunk, tantrums, refusal to comply etc etc --apraxics are social for the most

part so that rules out an ASD diagnsois--but we are really loking at a

neurological disorder continuum--with a lot of the separate peices overlaping

and needing specialized and very similar treatment --regardless of umbrella

diagnosis-ASD-or dyspraxia appraxia.

So --most oftne our kids will also have SID, low tone, poor coordination,

transition difficulties--will need similar OT Speech treatments----so don't get

hung up on the diagnosis--it is relevant for services in school if more

behavioral /social approaches are needed--but misdiagnois at this age is veyr

common--and unfortunate. It's the treatments of symptoms that matter the most.

Also if you notice the slightest low tone, poor coordination, unsure gate etc.

get an OT eval In fact your doctor should ahve recommended a speech and OT eval

right off the bat so threatment cna be started right away in both areas, o Most

kids with neuroloical disorders--or suspected of such--will need speech and OT

and the sooner this is started the better. Again, the exact diagnosi is not that

relevant and it cna change. treat the symptoms--be proactive--most parents wait

too long with doctors that know too little and hesitate to give a diagnosis

hoping the child will

catch up---if that happens no problem--remove the diagnosis--if it doesn't

hapappen---yand you wait 6 m another year---you miss out on the early

intervention period when the brain is the most plastic and that is very unfair

to the child and the family who has to struggle with the difficulties and maybe

plan different insurance plans in advance to be able to get apropriate

treatment.

If you do get the apraxia diagnosis--and with a PPO plan you shouldn't need a

doctor's referral --but it helps----go back to the doctor and ask her to confirm

it-it's a pure formality and if she doesn't go find another doctor--this one doe

snot understand the oath she took and how to best serve the interest of the

family and patient. She is obviously hung up on some ego trip--where she can't

stand being proven wrong--and that is irrelevant to child development--diagnosis

always evolve--change--they can be lifted they can be adjusted, they can be

given new codes to take into account worsening of the situation and new

developments in a negative way--so just as you don't hold a doctor responsible

for not noticing something sooner---you can't hold them responsible--as in---

accuse them of jumping the gun--if they give a diagnosis that no longer applies

in the future, If only all kids were that lucky!

Good luck--there's a lot of wotrk ahead--read all you can---join lists--figure

out ways to get the therapies your child needs and how to best support

neurological and metabolic functioning--they are related--in spite of the fact

that mainstream medicine treats them as if the brain existed in a vacuum.

All the best,

Elena

From: laura919 <lapatini@...>

Subject: [ ] New diagnosis (autism spectrum?) and 2 questions

(Long)

Date: Sunday, October 3, 2010, 11:25 AM

Well, we have a sort of provisional diagnosis, maybe. Ha ha.

Developmental ped says my 2.5-yr-old is too young to say for sure, but if he

were older she might call it Semantic Pragmatic Language Disorder. I look that

up and get more confused than before, because some sources place it on the

Autsim spectrum and some don't. I imagine it changes according to the winds of

the day.

She says he DOESN'T have Autism. She was ver clear on that, because she said we

probably won't have many services covered by insurance because of NOT having

that label, but that she can't in good conscience give it, but that she might

consider giving it in the future if his symptom picture changes with time. I

don't really want the label, but, as I said, when I look it up it seems he might

be considered on the spectrum anyway.

I'm not sure what she'll put on the official report. I'm guessing she will write

" communication disorder " or " language disorder. " She also said she would

consider calling it apraxia for us if it would help us get services in the

future.

Basically, her findings are that he has aspects of Autism, specifically deficits

in communication and imaginative play and some of the repetitious behaviors and

sensory stuff, but he is too socially interactive to be called Autistic. She

says she has very rarely seen this type of mix of behaviors, and she thinks we

should keep doing what we're doing (speech therapy and an intensive Montessori

preschool every morning), but consider adding Autism-type therapies (out of

pocket if necessary) to help with communication and behavior.

Sorry for the long intro, but my main questions are this:

Where can I find a list of ways to get NV into this kid? He can detect it in

anything and is super picky to begin with. I force fish oils, but NV is too much

to force in any way I can think of. I hate forcing anything, but the fish oils

make a HUGE difference in behavior and possibly in speech.

Second, have any of you very smart people found anything that can convince me

this gluten-free and dairy-free diet is worth the enormous trouble it will be to

get my picky, temper-tantrum-prone family to get on it? Even my husband will

tantrum if I go that route. I called the doc because I forgot to ask about it,

and her message was to try it and we can discuss later. She didn't mention it on

her own, though, so it's not on her list of must do stuff, apparently.

Thanks, folks.

I'm struggling to accept that we are going to be officially on the Special Needs

side of the road. I was holding out a bit of hope that we had just a speech

delay and a few odd behaviors, maybe a mild apraxia, but I guess the diagnosis

isn't as important as what we do for him. I also realize that diagnoses can and

do change. She seems to think there's a good chance we'll be able to mainstream

him. And she also seemed to think she was giving us good news. I suppose she is

used to seeing kids with a lot less to work with at the outset. And I've seen

kids with full-blown Autism end up in with too few symptoms to count as such

within a few years. The one I'm thinking of went on that awful diet, though.

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

October 3, 2010

Hi =

My son was diagnosed as PDD (Pervasive development disorder). My son's doctor,

wouldn't also give him a pure " autism " diagnosis because of his social

abilities, however he doesn't speak due to the apraxia. She feels that he may

be somewhere on the spectrum (he does have a brother with aspergers).

It is good that your doctor is being cautious about the label, but you really

need to look into whatever state you live in and your insurance company. We

live in Ohio. Because my son has a PDD diagnosis, it is considered " autism " by

the state. Because of this, he is able to get an " autism scholarship " which is

worth $20,000 year from the Ohio Deparment of Education that we are currently

using to pay for tuition for his special needs private preschool, OT and SLT and

for a home program including tutors 3x a week. He has made HUGE HUGE progress

since he started this intensive program in August. He has said HI, GO, EAT and

made word approximations (this is from saying nothing in July). I also credit

the NV and fish oil cocktail.

To get it the NV, I mix it in yogurt. I usually use the vanillia NV (1 scope)

mixed into strawberry yogurt. I tried it and I really can't taste it that much.

He is extremely picky and only has a handful of food he will eat. He has no

issue with the yogurt blend. Also, mix it into the gerber babyfood

blueberry/oats cereal which you can't taste either. He also likes it mixed

into ice cream (i put sprinkles on it which helps witht he grittiness).

For the Fish oil, we use the EFA/EPA combo. I mix this too into the yogurt and

he has no issues eating it.

As for the diets, I would try the NV first. With my older one, I had all these

tests done and the doctors said he was allergic to wheat, soy and milk. We put

him on a special diet for 3 months and it was 3 months of hell for us and him

(what can you feed them if you can't have any soy, milk or wheat)? after it

all, he showed absolutely no improvement in anything other than having meal

times being a complete nightmare so we just went back to his regular foods after

talking with the doctor. I would say try the NV since it really is a food

first.

>

October 3, 2010

Thank you. Just wanted to add that we're in Louisiana, near New Orleans. Finding

services for anything unusual is hard. For some medical specialties, this part

of the world may have one doctor for the surrounding two or three states. I've

been in touch with the head of an organization in Baton Rouge, and I just sent

her an email today with our new info.

>

> Well, we have a sort of provisional diagnosis, maybe. Ha ha.

>

> Developmental ped says my 2.5-yr-old is too young to say for sure, but if he

were older she might call it Semantic Pragmatic Language Disorder. I look that

up and get more confused than before, because some sources place it on the

Autsim spectrum and some don't. I imagine it changes according to the winds of

the day.

>

> She says he DOESN'T have Autism. She was ver clear on that, because she said

we probably won't have many services covered by insurance because of NOT having

that label, but that she can't in good conscience give it, but that she might

consider giving it in the future if his symptom picture changes with time. I

don't really want the label, but, as I said, when I look it up it seems he might

be considered on the spectrum anyway.

>

> I'm not sure what she'll put on the official report. I'm guessing she will

write " communication disorder " or " language disorder. " She also said she would

consider calling it apraxia for us if it would help us get services in the

future.

>

> Basically, her findings are that he has aspects of Autism, specifically

deficits in communication and imaginative play and some of the repetitious

behaviors and sensory stuff, but he is too socially interactive to be called

Autistic. She says she has very rarely seen this type of mix of behaviors, and

she thinks we should keep doing what we're doing (speech therapy and an

intensive Montessori preschool every morning), but consider adding Autism-type

therapies (out of pocket if necessary) to help with communication and behavior.

>

> Sorry for the long intro, but my main questions are this:

>

> Where can I find a list of ways to get NV into this kid? He can detect it in

anything and is super picky to begin with. I force fish oils, but NV is too much

to force in any way I can think of. I hate forcing anything, but the fish oils

make a HUGE difference in behavior and possibly in speech.

>

> Second, have any of you very smart people found anything that can convince me

this gluten-free and dairy-free diet is worth the enormous trouble it will be to

get my picky, temper-tantrum-prone family to get on it? Even my husband will

tantrum if I go that route. I called the doc because I forgot to ask about it,

and her message was to try it and we can discuss later. She didn't mention it on

her own, though, so it's not on her list of must do stuff, apparently.

>

> Thanks, folks.

> I'm struggling to accept that we are going to be officially on the Special

Needs side of the road. I was holding out a bit of hope that we had just a

speech delay and a few odd behaviors, maybe a mild apraxia, but I guess the

diagnosis isn't as important as what we do for him. I also realize that

diagnoses can and do change. She seems to think there's a good chance we'll be

able to mainstream him. And she also seemed to think she was giving us good

news. I suppose she is used to seeing kids with a lot less to work with at the

outset. And I've seen kids with full-blown Autism end up in with too few

symptoms to count as such within a few years. The one I'm thinking of went on

that awful diet, though.

>

October 3, 2010

Welcome to the group! Sounds like you have great doctors that are ready to help

you along with this special needs process. Just about all of my 9yo daughters

doctors are ready and willing to give us any script or diagnosis she needs to

guarantee the services she needs. My daughter didnt get a severe Apraxia dx till

4yo, mostly because the first Pediatric Neuro dropped everyones insurance and

the 2nd was just not the right one. When we found the right one, he gave us

whatever we needed to get her services. Have you seen a Pediatric Neurologist

yet? They are the best doctors for Apraxia, since it is defined as a

Neurological condition. There are plenty in your situation who have a Dev Ped

and Ped Neuro. My daughter has a dx of Hydrocephalus, so the Neuro is very

important in her continuance of care.

She also has a dx of CP, and her Physiatrist gave her the CP diagnosis as we

transitioned from EI to preschool, again to guarantee a continuance of services.

There is also a local group of parents here in NY, where I am. A lot of them

have kids with an autism diagnosis. About five in that group alone transitioned

from special needs prek to a mainstream K class with a few pullouts for

services. I also know a parent of a HS boy who was considered autistic as a

youngster and to say she struggled with him, is an understatement! But now he's

in HS with OT once in a while and all his services are gone!

A lot of these local parents have been doing the GFCF diet and have seen great

changes in their children! Do you have any access to local special needs parents

who can help you thru this decision? I know there are small steps to take to see

if it works and if its worth it.

Good luck with your doctors...sounds like they're just who you need on your

team!!

Maureen

>

> Well, we have a sort of provisional diagnosis, maybe. Ha ha.

>

>> I'm not sure what she'll put on the official report. I'm guessing she will