what to do next?

[Guest guest]

hi audra- the main questions i have for you involve where your sons speech

abilities are now which should be based on the speech therapy evaluation. it

should say what level your sons speech problem is at and that is what you base

your speech therapy needs on. my son has a severe to profound speech language

disorder which qualifies him for 4-5 units of speech a week . one unit is 30

minutes. What other issues is he having? Has he had anyother evaluations? Are

thee behavior problems? Have you been involved in any kind of a support group?

What does the speech therapist reccomend? Have you talked to her about the

picture exchange communication system, sign language, a schedule at home? If the

answer is no then maybe you should see what idea the slp has that would help

your child? Should you tape the therapy sessions? Is your child interested in

certain things that could encourage him to communicate? That was one of our

problems to begin with was just to show our son the power of communicating. Have

you read the late talker book. We are doing everything we can and I think a

comprehensive evaluation is the thing that has helped us the most to get the

services we need. I know that sometimes you just do not know where to start but

perhaps you can expand on what the slp is doing in therapy at home to start with

and take your lead from the slp since your child is being seen already on a

professional basis. charlotte henry

[Guest guest]

First of all, relax. This isn't going to be that bad, but it will

be challenging.

I figure the biggest challenge will be communicating with your

child, so that is where you should begin.

You could try to make your own picture exchange board so that your

son can point to things that he wants (there are some places that

have pictures online to print out). You could also just take

pictures of things around your house that your son is familiar

with. We put together a little photo album (from the dollar store)

with pictures of things my daughter wanted. You can cut out

pictures of food from grocery store adds, etc.

The other thing you can do is teach your child simple signs. Either

you can find out real signs or make up your own. We made up our own

for emotions. My daughter pounded her fist when she was mad. I

taught her the real sign for " I love you " .

One other thing that you can do while you are waiting on therapy is

to read to your son. Also keep working on things like numbers and

letters, etc. Just instead of having your son say things, have him

point to things. The big thing though is to have fun with all of

these activities. My kids always loved the attention they got when

I was reading with them or playing games with them. They didn't

realize they were learning anything.

As far as progress, every child is different. I had twins. One was

talking by 4 with only articulation problems, and the other one is

still having lots of troubles at 8 1/2.

The main referral besides speech that I would recommend is to get an

occupational therapy evaluation. There are just a lot of problems

associated with apraxia that an occupation therapist can diagnose

and treat (for example sensory integration problems).

Good luck!

> Hello everyone. I am so lost and don't know what to do next? The

> only thing I have right now is a diagnosis and I'm trying to get

an

> appt w/a neurological pediatrician.

>

> Since my son's Oral Apraxia diagnosis a week ago I've purchased

> whistles, party blowers and I have him licking things like sugar-

free

> ice cream cones, peanut butter spoons, etc. We have an IFSP

meeting

> on June 7 with the SLP (who diagnosed my 2-year old w/Apraxia) and

an

> Early Intervention coordinator to setup a plan for speech therapy

and

> to discuss my expectations. I don't know what I should expect to

see

> as far as progress and in what time frame? I feel that I am not

> prepared to advocate for my child because I dont know most of the

> ends and outs or what services are available for an Oral Apraxic 2-

YO-

> -I just have a battery of questions.

>

> 1. What can I do while I am waiting for speech therapy to begin?

>

> 2. Should I order the Kaufman Kit 1?

>

> 3. What should I expect to see as far as progress? Here is an

> example of his speech ability:

> He tells me to " shut up " or says " no " when he encounters a word he

> has trouble saying? He never initiates conversation with more

than 1

> word. Many words are distorted like circle is " kir-kle " , ice

cream

> is " ki-ream " tree is " free " and come on is " m-on " . When

he " talks "

> usually the 1st or last word is a word and the rest is verbal

> scribble-scrabble. He never says, " ma-ma I want … " He always

asks

> for something by pointing and using one word

like, " cuppy " , " Barney " ,

> or " pop-pop " (popcorn). What should I expect as far as outcomes?

>

> 3. What is the absolute least amount of therapy I should accept?

>

> 4. What other services/treatment should I inquire about?

>

> What should I be doing now?

>

> Thanks,

> Audra

[Guest guest]

Thank you so much for your suggestions. I'll work on improving my

communication with Kellen and incorporate pictures.

I'm also going to have him evaluated for SID because Kellen exhibits

some of the symptoms of SID like stuffing and not like having his

hair washed or brushed.

The 2nd person at his evaluation evaluated his motor skills. He was

an Instructional Assessment Specialist/Bilingual Educator, but now I

want an evaluation with an OT. Can I get another evaluation for SID

from and OT through Early Intervention, or do I have to pursue it

privately/w my insurance? TIA

[Guest guest]

I haven't seen the evaluation yet (doine last Saturday) but I will

get a copy when I meet with the SLP and Coordinator on June 3rd.

They basically told me that he has O-Apraxia and didn't say whether

it was mild/moderate/severe--I wasn't informed enough about the

condition at the time to asks more questions. They did say he

should/would have therapy 3 times a week. After researching Apraxia

on the net I MANY questions! I'm still in the info gathering stage

and want to have Kellen thoroughly evaluated to see if there are any

other issues that need to be addressed besides speech therapy.

Kellen does behavior problems. He acts out really bad and throws

tantrums, especially when I say no. He also pinches and hates to

share but I don't know if that's just part of the terrible 2s or if

it is something that needs to be looked into.

We are not in a support group, but I'd look to find one---I'm in the

DC/MD/VA area. I also went looking for The Late Talker at Border's

on Saturday and it says I'd have to wait 7-10 days for delivery.

Where did you get your copy?

[Guest guest]

you should be able to get a copy of the late talker book at speechville.com,

sounds like you are doing everything you can, by the way- on the apraxia.kids

network this month there is an article about getting social security approved

for kids and adults who have speech impairments and they would like to be

contacted by people who agree with that- dont know if it would have anything to

do

with recieving much needed st or ot and it is no doubt based on income and

the severity of the speech disorder but it could help alot of people who need

help- just thought you might want to take a look at it, apraxia is better known

than it used to be thanks to the internet and the late talker book. Today my

son josh said a 3 word sentence, i hope he will say it again sometime. it blows

me away when he says a sentence, speech therapy has helped us so much. i know

that it is easier to get help now than it would be if we had to put it off

until later. Our slp specializes in apraxia and uses the kaufman kit and prompt,

charlotte henry

[Guest guest]

HI all,

I am so glad that you are all here. I don't have much time to keep

up but whenever I have a bad herx day I start to read the posts and it

is so comforting to know that I am not alone. Well, its been one year

since I have been actively detoxing and I think I have done good. I am

working full time and somedays I wonder how I even get to work but as

soon as I get there I feel better because it takes my mind off my

detox. I am losing my job in a few weeks and have been hired at a new

company already but I told the new company that I wanted a few weeks

off before I start. I want to do some serious detoxing in those few

weeks. I plan to do another liver flush and some fasting but I am

wondering about trying lymph massage or IV chelation. Has anyone tried

these things? I am so limitied in funds so it will have to be one or

the other. Any suggestions? Thanks for always being here,

Joanne

[Guest guest]

Joanne,

You might consider a mini-tramoline for lymph drainage . . . You can get one for about 30 bucks . . . cheaper than one lymph massage - and will last a lot longer.

At least one doctor I've heard of is using an ionic foot bath in place of IV chelation . . . check www.ionicoasis.com . . . If you decide to buy, let us know though . . . You can get them for about half price on ebay for about $250, depending on the model. . . . The arrays that come with the foot bath will last for at least 200 foot baths! . . . Getting a foot bath elsewhere will run from $25- $40.

Hugs,

Rogene

[Guest guest]

Thanks Rogene,

I have a mini tramp but I am afraid to use it. It makes me herx

like crazy. I guess I am loooking for the easy way out. I also have

the foot bath and use it about once a week like you said. I used it

the other day after a 3 day juice fast and it made my feet burn like

crazy. I guess I needed more minerals. This is all so much weork.

And it takes so long to see results. One day at a time!

Joanne

>

> Joanne,

>

> You might consider a mini-tramoline for lymph drainage . . . You

can get one for about 30 bucks . . . cheaper than one lymph massage -

and will last a lot longer.

>

> At least one doctor I've heard of is using an ionic foot bath in

place of IV chelation . . . check www.ionicoasis.com . . . If you

decide to buy, let us know though . . . You can get them for about

half price on ebay for about $250, depending on the model. . . . The

arrays that come with the foot bath will last for at least 200 foot

baths! . . . Getting a foot bath elsewhere will run from $25- $40.

>

> Hugs,

>

> Rogene

>

[Guest guest]

Joanne,

The fact you herxed like crazy is a good sign . . . Just do as much as you can tolerate . . . it will get better really fast if you keep working at it . .

And yes, if your feet are burning, it means you need more magnesium. . . Very important to keep replacing those good minerals while doing foot baths.

You can take Magnesium every six hours if it makes you feel better.

I wish there was a really simple, painless, cheap way to feel 100% again . . . But, if there is, I don't know about it. Most of us have to do the work to get the benefit. . . Not doing the work is only cheating on ourselves.

Hugs,

Rogene

[Guest guest]

Thanks Rogene,

I don't know how you keep up with all these posts. I will try to

jump more. Did my second liver flush Saturday night with minimal

results until today. I don't know why I had such a slow reaction but

I did. Hope I don't get sick and get the rash like last time. I used

Oxypowder last night and it really worked today. I love that stuff.

Have a good day,

Joanne

>

> Joanne,

>

> The fact you herxed like crazy is a good sign . . . Just do as

much as you can tolerate . . . it will get better really fast if you

keep working at it . .

>

> And yes, if your feet are burning, it means you need more

magnesium. . . Very important to keep replacing those good minerals

while doing foot baths.

>

> You can take Magnesium every six hours if it makes you feel better.

>

> I wish there was a really simple, painless, cheap way to feel 100%

again . . . But, if there is, I don't know about it. Most of us have

to do the work to get the benefit. . . Not doing the work is only

cheating on ourselves.

>

> Hugs,

>

> Rogene

>

[Guest guest]

> My son is six, high functioning PDD-NOS. He is on Armour, Valtrex(high

> herpes 6)Nizoral, LDN, b12, many supps. We did about six rounds DMSA

> only, started at 5 mg every 4 hrs. Last round uppped to 7.5 mgs with

> no noticeable problems. Some slight improvements on round, lots of

> time in between rounds due to colds lately.

Because of the herpes, add lysine.

For colds, I use OLE and high doses of vitamin C.

> His major issues are lack of interest, wants to watch TV all the time,

> eye contact, does not make conversation, has trouble answering WH

> questions and social issues, abstract, lining up cars, etc. He is in a

> reg. classroom with support.

What helped my son with most of the issues above, is written here

http://www.danasview.net/issues.htm

What does his yeast protocol look like? You are giving quite a few

things that really tend to increase yeast.

Dana

[Guest guest]

How do I post my sons hairtest results, they are from 2007 and are from

Doctors Data, can you go on the website and link to a number etc?

Want some advice re what the numbers show ­ have done the counting rules but

am a tad confused

Regards

On 7/2/09 4:20 AM, " danasview " <danasview@...> wrote:

>

>

>

>

>> > My son is six, high functioning PDD-NOS. He is on Armour, Valtrex(high

>> > herpes 6)Nizoral, LDN, b12, many supps. We did about six rounds DMSA

>> > only, started at 5 mg every 4 hrs. Last round uppped to 7.5 mgs with

>> > no noticeable problems. Some slight improvements on round, lots of

>> > time in between rounds due to colds lately.

>

> Because of the herpes, add lysine.

>

> For colds, I use OLE and high doses of vitamin C.

>

>> > His major issues are lack of interest, wants to watch TV all the time,

>> > eye contact, does not make conversation, has trouble answering WH

>> > questions and social issues, abstract, lining up cars, etc. He is in a

>> > reg. classroom with support.

>

> What helped my son with most of the issues above, is written here

>

> http://www.danasview.net/issues.htm

>

> What does his yeast protocol look like? You are giving quite a few

> things that really tend to increase yeast.

>

> Dana

>

>

>

>

>