Re: Re: New here from South Africa

[Guest guest]

Hi

Thank you so so much for replying to my email. The information that you gave me

was amazing especially from the archives. The Pro EFA is a lot more expensive

for me so I am so happy to stay on Eye Q and maybe tweak it here and there.

From what I can tell she doesn't have hypotonia but she does have sensory

issues. She doesn't like to walk bare feet on sand, she doesn't like food around

her mouth and generally doesn't enjoy messy play. She also gets over stimulated

very quickly by sound. My eldest daughter has sensory modulation issues and we

brush her, I am also brushing my youngest to help with sensory issues.

I have no idea whether they plan to do another EEG. At the moment I am finding

it rather hard to get a neurologist to talk to me. There are very few pediatric

neurologists here and so they are really full. But I am on their waiting lists

for an appointment.

I have the Late Talker book, that is how I found you. I have only just started

reading but am devouring every page I get a chance to read. You truly are an

amazing person and I feel very lucky to have come across you. Thank you for

everything you do.

Nikki

________________________________

From: kiddietalk <kiddietalk@...>

Sent: Wednesday, May 6, 2009 7:27:47 PM

Subject: [ ] Re: New here from South Africa

Hi Nikki and welcome!

I'm not sure if we have any other members in South Africa but hopefully if we do

they'll shout out now. What I would recommend for you is that you continue to

use the EyeQ if it's convenient to purchase there as those of us that tried the

ProEFA and EyeQ unlike other formulas didn't see much of a difference. I'm not

sure however how much extra EPA you'd have to add to create the formula I

discovered to be better- but as you already noticed even when the formula isn't

100% right it still works. Tweak it a bit and it'll work faster. Fortunately

with fish oils the changes are quick enough within a day to 3 weeks that you can

tell. The reason I'm telling you to continue with the EyeQ regardless of the

extra EPA is because if you have it there you won't have to pay the extra monies

for shipping and customs and the ProEFA and EyeQ again are about the same.

Not all children with verbal apraxia have oral apraxia. Actually the only good

thing about oral apraxia is that it's a red flag that shows up earlier than the

verbal apraxia so one can diagnosis it prior to 2 years old even. There are a

number of members here who have children that have seizures. I don't believe

that Tanner ever had one but we still don't know if he did due to mega vitamin e

dosage that at the time one doctor recommended which I now regret I followed.

But yes seizures can affect every single aspect of not only speech but

development. Years ago we talked about carnosine (amino acid with an S not a T)

because pediatric neurologist Dr. Chez had worked on a formula called carn-aware

that was originally developed for seizures, but anecdotally parents were

reporting surges in speech. They did proceed with research but as with most

things today not for the original diagnosis but for autism. (so not quite sure

what it does for seizures even

though I know he continued to recommend it for all his patients with seizures

that are members of this group if you check the archives) Here's an old archive

about it that I added to the Cherab website

http://latetalker. org/information/ dietaryeffects/ carnosine. html

http://cherab. org/information/ dietaryeffects/ carnosine. html

There are also cases where one EEG comes back abnormal the first time but normal

the second. Are they going to do another?

Does your child have any neurological " soft signs " such as hypotonia

or sensory integration dysfunction?

http://www.cherab. org/information/ speechlanguage/ parentfriendlyso

ftsigns.html

I would also recommend that you read The Late Talker book and in your case start

a support group. It's is totally possible there are many other children with

apraxia in South Africa but little awareness so they are not being appropriately

diagnosed (and thus not receiving appropriate therapy)

Here's an article on how to start a support group part of which was pulled from

The Late Talker book:

How to start a support group with part pulled from The Late Talker book I co

authored with Marilyn Agin MD and Malcolm Nicholl 2003:

Many parents find it overwhelming when they have a child that is a late-talker.

Is there a problem? Who should we see - a doctor, a pediatrician, a speech

pathologist? Are we over-reacting? Do others notice that our child is not

talking?

How many times have we heard: " Einstein didn't talk until he was five years

old " ? Or how about " he will talk when he is ready... " or " she doesn't need to

talk, you give her everything she wants " .

Often these comments are from well-meaning family and or friends, who have no

idea of the impact their comments have on you and even your child.

It is validating and helpful to be with others who know how you feel, and who

really " get it " . Speak to others in your area about where to go to get service,

clinicians that have worked with children like yours, great and not so great

programs and services.

You can bounce ideas of each other, share information, and even give your kids

the opportunity to have a playdate with other kids who are like them.

A support group can be a couple of parents meeting with their kids at the local

Mac's, a group of parents sitting around a kitchen table exchanging

information and telephone numbers, or a more formal, regular meeting with a

larger group of families and even guest speakers. If you would like to meet up

with other parents in your area, please send us an email.

Interested in starting a group? Here are a few pointers...

Set up an email address where you can receive correspondence

from interested people. If possible, have a telephone number where people

can reach you to get more information. Link to existing websites, like

Speech-Express, to get your name out there for parents who may be looking for

support in your area.

Pick a place to have your meetings, and keep it to that same place - that will

make it easier for people, knowing that you always meet in the same place. A

community centre, church basement, etc. -- anything free.

Meeting frequency should be determined by your members - monthly, quarterly,

whatever works best for all.

Consider forming an executive for your group, so that the responsibilities in

the group are defined. Basically, a person to chair the meetings, and another to

take notes. Assign a person to bring refreshments to the meeting -- a box of

donuts, a coffeemaker & a can of apple juice for the kids.

Setting an agenda is a good idea, just so people know what to expect. Poll the

attendees at the end of the meeting to see what they would like on the agenda

for the next meeting.

Will you allow parents to bring their children to the meeting? Will you have a

babysitter, or will the children have to be watched by their parents?

Consider inviting guest speakers, perhaps your own SLP, a community worker,

someone from your child's school. The possibilities are endless!

Here are some more ideas from the Self Help SourceBook (online); a wonderful

resource with some great suggestions.

" Think " Mutual-Help " From the Start

You do not have to start a group by yourself. There are others who share your

problem.

Find a few others who share your interest by circulating a flyer or letter that

specifically cites how if one is interested in " joining with others to help

start " such a group, they can contact you. Include your first name, phone

number, and any other relevant information. Make copies and post them at places

you feel are appropriate, e.g., library, community center, clinic, or post

office.. Mail copies to key people whom you think would know others like

yourself. You can also ask if the notice might be published in your local church

bulletin and newspaper.

When, hopefully, you receive a response, discuss with the caller what their

interests are and what you would like the group to do. Ask if they would be

willing to share the responsibilities of organizing a group for a specific

period of time. By involving several people in the initial work of the first

meeting, they will model for newcomers what your self-help mutual aid group is

all about: a cooperative effort.

Also, consider obtaining the assistance of any professionals who may be

sensitive to your needs and willing to assist you in your efforts.

Physicians, clergy, and social workers may be helpful in various ways, from

providing meeting space to locating needed resources.

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

Find a Suitable Meeting Place and Time

Try to obtain free meeting space at a local church, library, community center,

hospital, or social service agency. Chairs should be arranged in a circle and

avoid a lecture set-up. If you anticipate a small group and feel comfortable

with the idea, consider initial meetings in members' homes. Also, try and set a

convenient time for people to remember the meeting, e.g., the first Tuesday of

the month.

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

Publicize and Run your First Public Meeting

To reach potential members, consider where they might go to seek help.

Would they be seen by particular professionals or agencies? If the answer is

yes, try contacting these professionals. Posting announcements in the

community calendar section of a local newspaper, library or community center

can be especially helpful. The key is to get the word out.

The first meeting should be arranged so that there will be ample time for

you and other core group members to describe your interest and work, while

allowing others the opportunity to share their view of how they would like

to see the group function. Identify common needs the group can address.

Although you do not want to overload you new arrivals with information, you

do want to stress the seriousness of you intent and the necessity of their

participation. Make plans for the next meeting and consider having an

opportunity for people to talk and socialize informally after the meeting.

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

Future Meetings

For future meetings consider the following:

Purpose: Establish the purpose of the group. Is the purpose clear? Groups

often focus upon providing emotional support, practical information,

education, and sometimes advocacy. Also determine any basic guidelines your

group will have for meetings (to possibly ensure that group discussions are

confidential, non-judgmental, and informative.

Membership: Who can attend meetings and who cannot? Do you want membership

limited to those with the problem? Will there be membership dues? If so, how

much?

Meeting Format: How will the meeting be structured? How much time will be

devoted to business affairs, discussion time, planning future meetings, and

socializing? What topics will be selected? Can guest speakers be invited? If

the group grows too large, consider breaking down into smaller sub-groups of

7 to 12.

Roles and Responsibilities: Continue to share and delegate the work and

responsibilities in the group. Who will be the phone contact for the group?

Do you want officers? Consider additional roles members can play in making

the group work. In asking for volunteers, it is sometimes easier to first

ask the group what specific tasks they think would be helpful.

Phone Network: Many groups encourage the exchange of telephone numbers or an

internal phone list to provide help to members between meetings. Ask your

membership if they would like this arrangement.

Use of Professionals: Consider using professionals as advisors, consultants,

or speakers to your groups, and as sources of continued referrals and

information.

Projects: Always begin with small projects, then work your way up to more

difficult tasks.

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

Final Thoughts

Stay in touch with the needs of your members. Periodically ask new members

about their needs and what they think both they and the group can do to meet

them. Similarly, be sure to avoid the pitfall of core group members possibly

forming a clique.

Expect your group to experience " ups and downs " in terms of attendance and

enthusiasm. It's natural and should be expected. You may want to consider

joining or forming an informal coalition of association of leaders from the

same or similar groups, for your own periodic mutual support and the sharing

of program ideas and successes.

=====

[Guest guest]

Thanks Jeanne. That is very kind of you. I will most certainly contact her.

________________________________

From: jbmistletoe <jbmistletoe@...>

Sent: Wednesday, May 6, 2009 9:39:41 PM

Subject: [ ] Re: New here from South Africa

>

>

>

> Hi

> I have been reading all your posts now for about a month but this is the first

time that I am writing. I live in South Africa. It has been just wonderful

reading and learning so much from all of you.

>

> I have a two year old daughter that does not talk at all, she does not even

babble. Because she is not verbal they don't really have any idea as to what is

wrong with her. I have taken her myself to a speech therapist as my pediatrician

does not believe in any intervention until they are over two. I have taught her

baby sign language which she loves because she can finally communicate with us.

I was unable to get Nordic Naturals here in South Africa but have started her on

2 capsules of Eye Q and have ordered Nordic Naturals over the Internet. I can

not believe the difference they have made. She is still not talking but she is

now making noises. She has even started saying dadadada and mmmmmmm. I would

like to put her onto the Nordic Naturals as that is what everybody on this group

has seen such amazing results with. I am just a little confused as to the

dosage. I have ordered the Pro EFA and the Pro EPA. Is the correct formula 2

capsules of EFA and 1

> EPA a day. That means I will be giving her 270 EPA 180 DHA from the EFA

capsules and 850 EPA and 200 DHA from the EPA capsule. Is that too much for a 2

year old? And if I take her off the fish oils how quickly will she regress? I am

too scared to take her off them as we are doing so well.

>

> She has been for an autism screening with a child psychiatrist. She doesn't

seem to think that she is autistic but agrees with the speech therapists

thinking that she has apraxia.. What I don't understand is can she have verbal

apraxia without having oral apraxia? She can blow out candles and blow bubbles

not great but she can do it. She can stick out her tongue on demand and blow

raspberries. She has also had an EEG done as she had periods where she would

just zone out.The EEG has come back as abnormal with suspected absence seizures.

I have to wait until October to see a pediatric neurologist who can explain

exactly what is going on. Does anyone have experience with absence seizures?

Does anyone know if they can affect speech development? She also has to go for

an MRI, should I stop giving her the fish oils for the MRI? I just really wish I

knew what was wrong with her so that we could help her learn how to talk.

>

> Sorry about all the questions but I would really appreciate any ideas your

help you can offer.

> Thanks Nikki

>

Nikki,

Jeanne here I have a member from south africa on my list her email is

below with her kids ages and hobbies.

> EMAIL

>

> lizl.pistorius@ gmail.com

>

> Girl AGE 5.

>

> VIDEO GAMES, BARBIE, COMPUTERS, BALLET,ANIMALS>

> Boy AGE 2.

>

> BIKES,ANIMALS, NATURE, AIROPLANES