Thanks for all the information

[Guest guest]

Judy,

What great news about 's progress! I used to live in NW Ohio and boy,

could I have used some well versed therapists! It sounds like you are in

good hands and that your proactive spirit is going to change things for the

better in Ohio! I hope your therapists run with their new knowledge and

share it with other therapists in the area. Best of luck to you and your

fine efforts!

Truly,

Uzma

[Guest guest]

Hello, it was exciting to see someone post from Dublin, Ohio. I live in

Canal Winchester, Ohio. My friends and I started a support group for

parents who have children with speech issues. So far, all of us have

children who have apraxia. We meet at Columbus Speech and Hearing once

a month. I'm interested to hear who your therapists are and more about

the school you are starting. My son is 4 1/2 and currently attends

Columbus Speech and Hearings LeLp preschool program.

The support group we started is called Cherab of Ohio and is

affiliated with Cherab. Our website is www.cherabofohio.org We would

love to have you attend if you are interested.

[ ] Thanks for all the information

I am seeing amazing improvement in since started Carnaware and

ProEfa.

's problems began following a febrile seizure (fever peaked at 101

several hours after the seizure, but this still fits the " textbook

definition " ). She went from being a " normal " 10 month old to having

extremely low tone, not talking or making any sound except a little

cooing,

unable to sit up, unable to roll over if she had a rattle in her hand,

etc.

She also lost all fine motor skills. She regained no skills for about

2.5

months and then started slowly relearning things. After waiting an

eternity

for an MRI, it showed delayed myelin (about 3 months) and PVL. She

continued

to make slow progress in every area except for speech.

We first started her on Coromega and saw a little change, but nothing

that

you couldn't say was just hopeful thinking on our part. We then started

Carnaware and in a matter of days, she went from taking a difficult step

or

two to walking everywhere and motor planning. A week or two later, our

ProEfa came and we started that. Her receptive speech was only a little

behind but has progressed from being able to follow only single commands

to

understanding serial commands (go find your doll AND put it on the

table).

Her expressive speech which was limited pretty much to " dada " of various

phrase lengths and intonations has exploded after only about a week. She

now

approximates many words, speaks in sentence structure, asks questions

and

identifies objects in form and in pictures. Her motor planning is also

dramatically improved.

Thanks for all the information you post and pointing me to the right

research. I have an fantastic OT and Speech therapist who work with many

apraxic children, DSI and/or autism who are well versed in Kaufman,

PROMPT

and Oral motor manipulation. The combination is astounding. I am now on

a

personal mission to get them to read the research on EFAs and

incorporate

that. Neither of them can believe what they are seeing in . I am a

Pediatric nurse practitioner with a practice focusing on the diagnosis

and

management of learning difference in children. I am also involved in

started

a non profit school for children with autism, apraxia, ADD and other

" labels " to provide them and their families with support and knowledge

and

accommodations to reenter the " traditional " school system if they so

desire.

It will be called (Starboard Education). I have always had this

interest,

but has certainly been the catalyst to my jumping into it full

force. I

am AMAZED at how little is out there and how ignorant AND closed minded

the

VAST MAJORITY of providers are.

Thanks,

Judy Cameron

Judith W. Cameron, PhD, RN, CPNP

President

Cameron Cognitive Services

5522 Aryshire Dr.

Dublin, OH 43017

(614) 763 - 0834

Judy@...

[Guest guest]

Hi Judith!

Yay !!!!!!! Way to go!!!!!! You just keep on talking and

talking and talking. I can tell you as a myself that us 's

love to talk!!

What a beautiful story Judith -both of your dedication and

commitment as a parent and as a professional -and of your daughter

's amazing progress (and yet again within one to three weeks as

we almost 100% all report!) What you talk about in your message is a small part

of

one of the many obvious and important issues we cover in The Late

Talker book that for whatever reason was not looked at before...or

yet by the public or professional communities at large. Like you I

hope what was learned through personal struggles will raise

awareness and help prevent the same from happening to other children

in the future.

My son Tanner at 11 months old also regressed in the same ways after

his 2 weeks of high fever (without any seizure -and with both the

hospital doctors I called each night and the pediatrician 's office

I called each day insisting over and over to me there was " no

reason " to bring him in unless we " couldn't break the fever or he

had a seizure " ) I wanted so much to not listen to them and just

bring him in -I'm not sure if that would have made any difference

however. It's hard sometimes today to know so much more of how I

could have helped him then -but nobody knew then what we know now -

or at least not anyone that I knew then as a pediatrician. Nobody

even knew there was anything wrong with him -Tanner was our " normal "

baby who was " just " a late talker. Five and a half years ago

Tanner's regression after the fever was not looked at as anything -

except well, he was sick for a few weeks and it took alot out of

him. Give him time.

No matter what creates the fevers/regressions/myelin problems etc. -

it is quite apparent that the right EFAs together with multi-sensory

appropriate therapies -from a young age our children could be

getting helped sooner which has been proven to be more beneficial

both for the child (and family) and for society.

Perhaps today we can't prevent or stop fevers -and maybe we don't

want to do that. However -MD's and all pediatric professionals

should all know and teach young parents to look for and take any

signs of regression after fever/sickness- or any time -seriously.

The American Board of Neurology and Psychology has put that in their

statement since 2000 -any regression at any age means immediate

referral to a neurodevelopmental MD.

In spite of that -if a child " catches up " for the most part on most

area's outside of " just " speech -our children for the most part are

grossly overlooked at as " just " late talkers at a young age -or

autistic or PDD even when they are not at an older age.

You are also so right about the still inexcusably low amount of

awareness there is to what great difference the few drops a day

simple addition of the right Omega 3/6 formula of oil makes in our

children in just one to three weeks. And continues to make over

time. As you posted -the Coromega (a great formula for those just

looking for a pure Omega 3 formula) typically produces mild to no

results in our children for some reason in spite of all

the " experts " who say our bodies don't require the Omega 6 since

it's in so much of our diet. It drives me crazy wondering why more

PhD's wouldn't jump at researching all the " whys " of this -something

that could so help so many children -so many adults- in such an

inexpensive simple way all over the globe. The research would be so

overwhelmingly positive -we all know that from the hundreds upon

hundreds of anecdotal reports from both parents and professionals.

Like I've said in the past -we would have had faster research if the

same results were from Mc 's French Fry oil vs. just plain old

mother nature made stinky fish oil. Again as an inventor -for the

pharmaceutical companies on this grouplist -and the researchers -

there is money in fish oil. Figure out a creative way to get it

into our foods more -or work on a " patentable " patch. There has got to be a way

for

you guys to make money out of something mother nature provides when

it's so lacking in today's diet due to fast and processed foods and

due to mercury and other pollution of the fish etc.

Also about the school Judith -good for you!! We are all here as

your cheerleaders and will help you however we can. The media too

is ready to help and looking for stories about schools for autism

(which is still the main buzz word in the media -even though apraxia

will see the light soon) I know Melinda Kotler's TALK group which

is behind the Association School starting in PA that she has posted

about was just featured on ABC's Good Morning America!!! The story

wasn't about apraxia, it was about the school and about autism -

however since apraxia is part of what the letters " TALK " stands for -

Dr. Marilyn Agin's phone in NYC has been ringing off the hook (since

she is the first neurodevelopmental pediatrician who stood behind

our cause of raising awareness to help apraxic children.)

Please do contact , Carole, and everyone from CHERAB of Ohio

http://www.cherabofohio.org They are a great group of individuals

and are doing great things already. With the passion of all of you

there in Ohio -it sounds like we will be " hearing " many more great

things soon! Thank God for the children for people like all of you -

and again -Congratulations! and thanks so much for sharing!!

=====

[Guest guest]

Mark, I'm so glad that you were able to find some helpful information here. Between the info in the Links section and the BTDT (been there done that) experiences of the members here, I don't think there's any other source in the world that is as comprehensive as this little freebie support board when it comes to information about living with achalasia!Let us know how it goes with your doctor next week!Debbi in Michigan

All,I've been reading everything I can on this site about our disease and I'm better prepared for my family physician next Monday. I'm going to try to get a referral to the Cleveland Clinic. I was dignosed 6 years ago with A and I'm getting worse due to lack of proper treatment. You have given me hope and courage to face the future.Thank you.Mark from Dayton, Ohio

[Guest guest]

I appreciate all your help!

[Guest guest]

Kathleen:

I used a calcium channel blocker called diltiazem for about a year while in the

process of

diagnosis and wait for surgery. The medication was very helpful to me in

allowing me to

stabilize my weight loss, but over time, it became less and less effective. I

no longer take

it as I have had a successful myotomy.

I also had periods of being more able to manage eating when relaxed -- our

gastrointestinal systems are our " second " brain that have a direct connection

without our

famous ability to deny, so when we are relaxed, our systems work better.

Finally, it is true that when I was starving I was not as clear headed or

energetic and the

ability to eat brought back the Joi de vivre! A recent example is our lilac

cheerleader Ann!

Peg

>

> I just wanted to thank you all for your support and the information

> you've put in the 'Files' and 'Database' section as well as all the

> references to the articles. It's been a long time since I've done

> so much reading, but I think I'm getting more familiar with 'A'.

> After one conversation with my GP I realize I may know more about it

> than her. My gastro. doc was on vacation and I tried to ask her

> some questions and she just ended up reading my file to me. She

> started talking about drugs she used (calcium-channel blockers I

> think she said) with her one other 'A' patient six years ago. Has

> anyone tried drugs to help with 'A'?

>

> I finally have more energy now that I've concentrated more on

> getting good nutrition in. The good/bad foods file had some helpful

> suggestions for me. I have Ensure every day (thanks for the hint

> Ann) and protein powder in my smoothies. I discovered if I eat

> reeeeeeealy sloooooooow and chew everything and drink lots of sips

> of water I can keep some solid foods down. And I've learned to pay

> attention when it feels like food is " backing up " in my throat. I

> never paid attention to how it physically feels to eat/swallow until

> now. And I'm on vacation this week at our family cottage on a small

> lake in Michigan. Is it my imagination or can I eat better now that

> I'm a bit more relaxed?

>

> -- reading your jouney is amazing. I so wish things would

> go better for you but I appreciate all that you've shared with the

> group.

>

> Doreen -- good luck on Tuesday. I really want to know how it goes

> since I think I'm in a similar circumstance -- having to decide

> between the balloon dialation, botox and surgery. I meet with a

> surgeon in about two weeks to discuss my options.

>

> Ann -- I loved the 'surgical treatments for achalasia' link you

> posted. I have learned so much from that and will be very intersted

> in what my surgeon has to say.

>

> And to everyone who shares their experience, thank you for letting

> others learn from you. I do appreciate it.

>

> -Kathleen

>