New with questions

March 26, 2003

Candy

I'll respond to one of your questions regarding private therapy. I think

you'll find a wide range of answers to this, depending on the services

provided by your local EI as well as the individual therapist.

We moved during my daughter's time in EI and (at current count) have had 5

different EI therapists in two states. Without boring you with details,

there can be a HUGE difference in what you get in different locations...even

within the same county but with a different therapist. My learning has been

it all comes down to the therapist. If you get an EI therapist that is

experienced with these sorts of problems AND can engage your child, (to me,

these are two completely different things!),try to maximize the visits/time

you can get with that therapist, especially if your child has more than a

few months before turning 3. If your therapist in EI doesn't offer both --

try to get another, but in our experience the time/difficulty in 'switching'

within EI wasn't worth it. At that point, or as your child gets closer to

3, you may want to start a search for a private SLP. The benefit will be

you can completely pick who it is, and ensure they are knowledgeable and can

engage your child. Once you find one you like, you can stick with them as

long as needed, not just until they turn 3. This consistency can be very

helpful if your child ends up in a developmental preschool environment at

age 3. Of course, the downside of a private SLP is cost... check the

resources on the website for tips in securing insurance coverage.

Not that I can claim scientific proof, but my daughter starting showing

significant improvement after we found the 'right' private SLP and being on

EFAs for a few months. We've kept the EI services in the meantime, and

asked the private SLP to work with the EI SLP to coordinate approach. As my

daughter is 3 in June, I'm toying with increasing the frequency of private

therapy and stopping EI a few months early. (I've got a newborn as well and

there is only so much scheduling I can handle...when I prioritize, what I

think is contributing the least right now is the EI therapy).

I think one more reason why private therapy has helped us so much is that

after a year of EI-only therapy in our home, my daughter became rather

un-cooperative. In-home therapy is great and convenient, but for Ellie, she

didn't want to play the therapists' games when we were in her home turf.

When we are at the private therapists, she's much more cooperative. But,

I'm sure there are parents who have had the opposite experience as well!

Hope this helps

[ ] New with Questions

> Hello, I just joined the board and thought I'd introduce

> myself and ask a few questions. My son turned two this past

> December and is currently receiving speech therapy through Early

> Intervention. He has only had a handful of sessions so far so I

> don't really have any opinions yet from the therapist. He says a

> couple of two word sentences like hi doggie and hi mommy. He says

> bye but then he says eye eye when he adds an extra bye. The

> therapist says he shows some apraxia symptoms. He can't blow

> bubbles, bites his straw, and even though he understands just about

> everything refuses to use the words for them except occasionally. I

> just started him on ProEfa two days ago so I have my fingers crossed

> that will help.

> My son's history: born breech at 38 weeks gestation with

> dislocated hip, asymmetrical headshape, and severe torticollis.

> Underwent PT for torticollis from 4 months to 14 months and 2

> DOCbands from 9 months through 18 months. Sees an osteopath every

> three months for cranial manipulation.

> Now to the questions: One of my questions is that when my son is

> playing he totally focuses on that toy to the extent that he will

> ignore anyone asking him questions or asking him to do something.

> He doesn't like to make eye contact when asked. His therapist says

> this is an indication that he won't follow direction. Does anyone

> else's child do this?

> Also, I heard someone mention a neurodevelopmentist in

> sonville, land; Carol Samango-Sprouse, which is only a few

> minutes from my home. What does a neurodevelopmentist do?

> I have an appt. next month to have my son evaluated by a private

> speech therapist. Does anyone's child see a private therapist as

> well as the one in the EI Program at the same time?

> Thanks for listening and I look forward to any response.

>

> Candy, mom to

> land

>

March 26, 2003

Hi Candy -

Welcome - I am so glad you found us!!

Your has a lot of the same characteristics my son had when he

was his age. Focusing on a certain toy and seeming to block

everything else out - did this. Looking back I think it was

his way of having control of something. Since he couldn't talk at

the time he would " control " what he was playing with. I also like to

think that since these boys will grow into men, they are practicing

their " selective hearing " !!

Eye contact is another big thing that many kids with apraxia have

trouble with. would not make eye contact with anyone,

especially when he was non-verbal. I think this is because he knew

he couldn't verbally communicate, so he didn't want to try. Think

about it - If you were in a foreign county and didn't know their

language, would you make eye contact with people? I wouldn't because

I would be afraid that would open the " air " for a hello or some sort

of communication. Usually people don't come up and talk to you

unless they have made eye contact first.

When I wanted to look at me, I would take his hands and put

them on my face. He would then look at me in the eye. I would not

put my hands on his face as this was an invasion of his space and he

did not like it. Once we got in the routine of this I would start

verbally cueing him by saying - , look at me when I am talking

to you please. He is 5 1/2 now and I still remind him. He still

does not like making eye contact - but he does when he needs too.

We went to a private therapist since was 2 1/2. When he

turned 4 we started through the school system (even though you can

start at 3.) I would not have changed our private therapist for

anything...she is the reason is doing so well. I know many

people that use early intervention, and then supplement with private

therapy. I believe that you, as 's mom, knows what he needs.

You are his biggest advocate and always will be. My goal was for

to catch up to his peers by the time he started Kindergarten.

He has met that goal. We still have many hurdles ahead, but at least

one goal is behind us!!

Good luck - let me know if there is anything else I can help with!!

North CArolina

.........

> Now to the questions: One of my questions is that when my son

is

> playing he totally focuses on that toy to the extent that he will

> ignore anyone asking him questions or asking him to do something.

> He doesn't like to make eye contact when asked. His therapist

says

> this is an indication that he won't follow direction. Does anyone

> else's child do this?

> Also, I heard someone mention a neurodevelopmentist in

> sonville, land; Carol Samango-Sprouse, which is only a few

> minutes from my home. What does a neurodevelopmentist do?

> I have an appt. next month to have my son evaluated by a

private

> speech therapist. Does anyone's child see a private therapist as

> well as the one in the EI Program at the same time?

> Thanks for listening and I look forward to any response.

>

> Candy, mom to

> land

March 28, 2003

Michele: Welcome to this group. You will learn so much just by reading

all of the posts and messages, even about things that are not a topic for

you at that time....read them as much as you can.

About your Pro-EFA question, the (time)results are varied, but the " usual " time

is approximately 3 weeks before seeing progress. Some parents see results

earlier, some later. For me, it took about 6 weeks before we saw

significant progress, and the progress is still happening. I only used

one capsule a day for my son, who was 2.6 at the time. He is now 3.1 years

old and is still on one capsule a day.

When my son was 2.6 years old, he only had a few words in his vocabulary,

mostly signs. It helped me to keep a list on our refridgerator of his

words that he was using consistently. It helped me to see that he was

making progress, and I shared that list with his therapist. Although we

have a LONG way to go, and I get discouraged often, my son now speaks in

3-5 word sentences and has an unlimited vocabulary.....he is just having a

tough time putting them together. NOW, we are dealing mostly with

attitude problems and tantrums/behavior. Go figure, when he couldn't

speak, he was a sweetheart. Now that he is verbal, he is tough to take!

It is great that you got him into therapy, for speech, OT and PT. Keep it

up and Good Luck!

Kim

Hi there,

I just joined this group yesterday and thought I would give a

background why I am here and ask a few questions.

My son is 2.5 years old and has apraxia. He also has reflux, food

allergies, sensory integration dysfunction, hypotnia and epilepsy

(current controlled on medications). He only babbles and although I

think he says single words from time to time, I think it is just

babble. He cannot blow bubbles, or kiss with his lips, or drink from

anything but a bottle (probably more behavioral). He has been in EI

ST for about a year but for the first 8 months the therapist said she

only needed to see him once a month, then for a few months after I

pushed for it they increased it to 1x a week and then finally a month

ago 2x a week. My son also gets OT once a week and PT twice a month

through EI. We pay for two private therapist as well, a feeding/oral

motor specialist and will be starting with a sensory inegration

therapist this Monday. My son has made progress overall, but

expressive speech has been so slow. He does not have a single word

in his vocabulary that he will use on a daily basis. He can sign

about five things now. We had him on Cod Liver Oil for a month and

now we are switching to Pro EFA I am hoping he has success like some

apraxic kids.

My questions:

1) How long did it take to see if Pro EFA works? How many pills did

you start with a day?

2) Anyone from CT that can recommend a very good private ST? I want

the best even if it cost me.

3) Any support groups in CT?

Thanks-

Michele

March 28, 2003

Michele,

My apraxic son is now a month away from 4 years old. He had reflux and still

has sensory integration dysfunction, hypotonia, dysarthria, global apraxia. My

older child has epilepsy, he is 6yrs old. The apraxic son was only making the

ah and eh sound at the age of 2.5 years and started saying his first words about

5 months ago. He is now up to 45 words consistently and many others he can say

with prompting and we are beginning to put two words together i.e. apple sauce

(his favorite food) and ball up. He puckers his lips with prompting now put

not always. He does intense oral motor therapy at home and in private and

public speech. He has been on ProEFA for I think a little over a year and it

took about a month to see big spurts and in the beginning it was in OT. He

started on one ProEFA a day, we increased to two about 4-5 months later when he

plateaued and now we are on One ProEFA and One EPA a day.

I can't help you with CT but good luck.

Daphne

April 24, 2003

Please read Children with Starving Brains by Dr. McCandless. Her 2003

edition is just out and it will sum up everything you need to know and it

will help formulate questions to ask. It is an easy read and written by a

DAN doctor. Dr. McCandless is trying to cure her grandaughter from autism so

she has a vested interest in finding the cure!!

April 25, 2003

Elayna,

Welcome to the list. Check the FAQs of this list for info about how to get a

hair analysis from DDI with or without a doc of your own. Many on this list

chelate without a doc. Digestive enzymes, probiotics, and for some the gfcf

diet help with the gut issues.

S

Where can I get a metals (hair) test done on my child? Also Is there

a book I can buy about chelating? Is this only done under a Dr's care?

I do have access to a Dan Dr. in my area. But you first have to go to

a meeting and everyone brings 10.00??? Seems shady to me. Also, I

keep hearing about healing the gut, how is this done? Thanks,

Elayna

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April 25, 2003

Hello,

> Where can I get a metals (hair) test done on my child?

details here:

/files/HOW_TO_hair_test

> Also Is there

> a book I can buy about chelating?

not really, but there are a few books that have some info on it:

/files/Books_about_autism

The first section about biomedical and metals issues may be some

help.

> Is this only done under a Dr's care?

A lot of people do it under a doctors care, some do it without

a doctor directing it.

> I do have access to a Dan Dr. in my area. But you first have to go to

> a meeting and everyone brings 10.00???

I don't know if I understand what you mean here. What is the

meeting? Like a lecture or something?

> Seems shady to me.

I don't know, I don't get what the meeting is about yet.

Most doctors will want to do an inintial intake visit, and

a bunch of tests, and possibly a number of visits, before

chelating. That is a LOT more than $10.

best,

Moria

April 26, 2003

> Hi,

>

> Where can I get a metals (hair) test done on my child? Also Is there

> a book I can buy about chelating?

There is info here

/files

>> Is this only done under a Dr's care?

Not necessarily. It depends on your philosophy and what your child

needs.

> I do have access to a Dan Dr. in my area. But you first have to go

to

> a meeting and everyone brings 10.00??? Seems shady to me.

Yep

Also, I

> keep hearing about healing the gut, how is this done?

Depends on what your child's issues are. In general, it means

removing food intolerances [with diet, enzymes, or both] and

yeast/bacteria issues

http://www.danasview.net/parent3.htm#diet

Dana

January 20, 2005

>

> Hi there. I stumbled upon this group purely by accident, but as it

> turns out have a ton of questions. My son is 4 mos old and the

right

> side of the back of his head is flat. He favors this side when

> sitting, sleeping, eating, etc. Our pediatrician has not made any

> diagnosis of plagiocephaly in so many words, but has mentioned the

> flat spot at both of his visits and told us we have to do something

> about it (i.e. repositioning). I've done some basic internet

> research and am wondering if we shouldn't be a bit more concerned

> than we are or if we are making a big deal out of this. I've tried

> to compare his head to pictures I've seen and while his ears are

> symmetical, his head is very slanted when looking down on it from

> above. I've had people tell me it will fix itself once he starts

> sitting up and crawling and others tell me that if we don't do

> something now, he'll have to wear a helmet 20 hours a day!

>

> We have tried repositioning several times during the night, but he

> always winds up looking straight up (which is still better than to

> the right like he used to). We bought the noggin nest for his

> carseat, bouncy seat, etc., but don't know if this was a total

waste

> of money or not. I don't want to use a sleep positioner, since I've

> read that those can be dangerous in cribs. We alter how we feed

him,

> position him, etc.

>

> I guess I'm just looking for a bit more info, advice, and ideas.

> Hopefully this is the correct forum for me! Sorry for such a long,

> wordy post and thank you.

>

> -J.

Welcome J,

My son was 11 wks when I started noticing the back right of his head

looking flat. Actually it looks alot worse in the front left side

where its not filled out as much. Put your son in the mirror and look

at his image. Can you tell if he has any asymetry? That's what I

based my decision on. His image looked terrible in the mirror. Really

asymetrical. He's been in his band for about 4 weeks and I'm

beginning to see improvement.Good luck.

Kristy

January 20, 2005

Hello,

Welcome to the group! You are absolutely in the right place for

your questions. We have extensive repositioning sections in both

our files and links areas. We also have many success stories on the

board of parents who have avoided a helmet through repositioning.

It is a difficult task though, and needs to be done 24/7 to be

effective. Has your son been evaluated for torticollis? At his age

repoing will get a bit more difficult now b/c he's not going to want

to sleep where you put him, but at the same time he should be able

to spend some time in an exersaucer now. Another product you should

look into is www.babybumboseat.com. As far as sleep repositioners,

there are two fairly new ones at www.nightform.com and

www.sleepshaper.com. Sleeping is the most important time for him to

be off his flat spot, so it's something I would strongly consider.

How severe do you think he is? We have severity assessments in our

links section. Could you post a picture of his head from a birds

eye view? Laying him on a boppy pillow will help with getting one.

It's important to record your progress with pictures as well, so you

know the repiong is working. Also, where are you located? Cranial

Technologies, www.cranialtech.com, offers free consultations.

They'll give you an idea of his severity and will help you track his

progress. If he does end up needing a helmet it is worn 23 hrs a

day, but really isn't as bad as it sounds. My daughter had severe

right sided plagio and wore three bands for 14 months. Her before

and after pics are on her website below if you're interested.

Looking through our before and after photo area may help out in

determining your son's severity as well.

, mom to Hannah, DOCgrad

Cape Cod, Ma

http://hannahsnoggin.typepad.com

>