Re: Digest Number 6112

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Late talker/speech delay vs. apraxia? Learn about children's communicationFrom:

" syringaweb " <cmi@...>

" jbmistletoe " <jbmistletoe@...>

Sent: Wednesday, September 10, 2008 12:31 PM

Subject: Re: Special Needs Attorney Needed

> look on the yellow pages for kids page on wrightslaw.com. They have a

> state by state listing

[ ] Digest Number 6112

Late talker/speech delay vs. apraxia? Learn about children's communication

Messages In This Digest (7 Messages)

1. DIBELS...HELP! From: momtomegandnate

2a. Re: Dr. claudia ' Presentation at the Northern California Apra

From:

3a. Re: Looking for focus group for new fish oil supple... From: mykitkate

4.1. Re: from another digest From: mykitkate

5a. confused From: e.leaming

6. Calcium supplement From: jennyjudy@...

7a. Re: Special Needs Attorney Needed From: renee_schwartz_1976

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1. DIBELS...HELP!

Posted by: " momtomegandnate " LiskeyFamily@... momtomegandnate

Wed Sep 10, 2008 4:39 am (PDT)

Anyone have any information regarding the wonderful DIBELS test our

five year olds are encountering? I am concerned about this. Should I

be? My (typical) daughter breezed though all this, back when she was

younger. My son with apraxia is just starting to recognize letters and

connect their sounds. His speech is about 70% intelligible and he has

some word retrieval issues. I do not want to set him up for failure.

We are in a small private school. I did not plan for this (mentally)

as I did not think they would be testing (first year 5-K class for the

school). Any advice?

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Messages in this topic (1)

2a. Re: Dr. claudia ' Presentation at the Northern California Apra

Posted by: " " mgal33@... mgal33

Wed Sep 10, 2008 4:51 am (PDT)

, great info, thanks. Did you determine what the dosage that you

should be giving Remi is? Best

> >

> > I'm confused. I just ordered the fish oils for my 2 year old.

> Which vitamin e should I order and how much should I start with.

> > -------------- Original message from Hanagan

> <hanagan_8@>: --------------

> >

> >

> > This is a summary of the information as I interpreted it: Dr.

> described the phenotype or syndrome of apraxia.....referring

> to it as the Allergy, Apraxia, Autism, Malabsorption Syndrome. Many

> of the children present with low levels or have issues with the

> following: zinc deficiency (sick a lot)B Vitamins (low)Cholesterol

> (low)Albunen - fat malabsorptionOmega 3 (DHA & EPA levels low)

> carnitine deficiencyceliac/gluten sensitivity misc: amino acids,

> selenium, magnesium, calcium, glutathione She stressed the

> importance of natural vitamin E. The synthetic brands are more

> difficult to digest. She stressed the importance of finding

> reputable sources of vitamin/mineral supplements. She had a story

> where she traced the origins of one of her son's supplements.

> Apparently it was made in China with human hair.....She did not

> recommend OTC brands. She recommended the following labs:

> carnitinegluten sensitivity testsCBC panelcomplete metabolic

> panelstool study for fat malabsorptionVitamin Labs (ADEK) There's a

> new supplement coming out, that includes vitamin E, fish oil, and

> carnitine (I think). She stressed the importance of Vit. E

> supplementation (along with fish oils).....and that the E helps with

> the sensory stuff She spoke a lot abut villias atrophy (sp??), and

> it's connection to carnitine deficieny (absorbing vitamins in the

> gut) She mentioned that apraxia could be early celiac.....or that

> the positive labs for gliaden sensitivity could be leaky gut. She

> also commented that some children had low cholesterol (lower than

> 120), which is very bad for a developing brain. She spoke of right

> side parasticius (spelling??), which I want to look into Abnormal

> transporter in gut affects the transport of vit. E and cholesterol

> One woman spoke about the DAN protocol.....Dr. responded by

> saying that she felt some/many of the labs done by DAN docs, through

> (Great Plains) their labs were unreliable. When asked about heavy

> metal toxicity, she responded by saying that 'certainly, some

> children were suseptable to toxicity/genetically.....but it's

> everywhere, and that a can of tuna had more mercury than vaccines'.

> She spoke about both of her son's labs, and that her (more)

> unaffected daughter had the same biomarkers, and that hormones

> protected her (according to some research/information), but that

> that 'it should be interesting when she hits menopausal years.' And,

> lastly, she saw similarities in this research and her research on

> sickle cell anemia. HMMMMM!

> >

> > See how Windows connects the people, information, and fun that are

> part of your life. See Now

> >

> > See how Windows connects the people, information, and fun that are

> part of your life. See Now

> > __________________________________________________________

> > Get more out of the Web. Learn 10 hidden secrets of Windows Live.

> > http://windowslive.com/connect/post/jamiethomson.spaces.live.com-

> Blog-cns!550F681DAD532637!5295.entry?ocid=TXT_TAGLM_WL_domore_092008

> >

> >

[Guest guest]

Also Helpful -- there are 2 legally recognized standards of care - IDSA (short

courses) and ILADS(longer, more individualized) - your Dr. Is required (see AMA)

to share both options. Go to www.ilads.org and print out their treatment

guidelines and read/highlight the acute treatment section and put it in front of

your Dr. Based on your understanding of the different " optional " guidelines,

this approach is the way you want to go. All the science shared by others is

accurate. Good luck!

Sent via BlackBerry by AT & T

[ ] Digest Number 6112

Lyme Aid

Lyme Aid

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ycElkAzczODQEZ3Jwc3BJZAMxNzA1MTA2MDEyBHNlYwNoZHIEc2xrA2hwaARzdGltZQMxMjc2MzM3NjQ\

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Messages In This Digest (4 Messages)

1a.

Re: Quest testing for lyme and coinfections From: allrpossible@...

2a.

daughter has lyme From: allrpossible@...

3a.

LLMD in Dallas, TX From: eriksmithtx

4a.

Re: Newbie again From: Cindi Callanan

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1a.

Re: Quest testing for lyme and coinfections

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Posted by: " allrpossible@... "

allrpossible@... <mailto:allrpossible@...?Subject=

Re%3A%20Quest%20testing%20for%20lyme%20and%20coinfections>  

faithiseverything

<faithiseverything>

Fri Jun 11, 2010 9:42 am (PDT)

I used it, a big fat negative. Igenex says some positive bands and some

indeterminate. I am sticking with Igenex.

Love and prayers,

Heidi N

How does Central Florida Research's testing stack up?

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2a.

daughter has lyme

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Posted by: " allrpossible@... "

allrpossible@... <mailto:allrpossible@...?Subject=

Re%3Adaughter%20has%20lyme>  

faithiseverything

<faithiseverything>

Fri Jun 11, 2010 9:46 am (PDT)

Used on kids here, even some that were 4. Great results, but it wasn't

the cure. Die-off started on day 4, and was bad for one of them, and

mild for the other. I was exhausted for weeks. It took about 3 weeks,

and the die-off left and we lost some symptoms, but we are still taking

it plus gobs of other stuff to keep symptoms away. It's been a year or

so. Some people react with so much die-off that they put one drop in

water and drink that cup throughout the day. At first, one drop kicked

our butts, but after a few weeks, we could take 15 drops a day like it

was nothing. I could even take 30 drops a day with no die-off, after a

couple more weeks.

Love and prayers,

Heidi N

Just got my 4 and a half year old's Igenex test back, positive, I

figured she had it congenitally, she has had headaches, chest pain, body

aches, tiredness, anger and numb/tingly fingers. I am wondering if

anyone has tried samento for kids? I have an appt with my LLMD wednesday

and she said I can start her on samento, but I am just scared to. Any

thoughts?

Bridget

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3a.

LLMD in Dallas, TX

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Posted by: " eriksmithtx "

eriksmithtx@... <mailto:eriksmithtx@...?Subject=

Re%3ALLMD%20in%20Dallas%2C%20TX>  

eriksmithtx

<eriksmithtx>

Fri Jun 11, 2010 4:01 pm (PDT)

I am looking for a LLMD in Dallas (area), TX. Are there any good ones? My

family doctor is not much help.

Thanks,

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4a.

Re: Newbie again

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Posted by: " Cindi Callanan "

cindicallanan@... <mailto:cindicallanan@...?Subject=

Re%3A%20Newbie%20again>  

cindi_callanan

<cindi_callanan>

Fri Jun 11, 2010 4:05 pm (PDT)

Hi Ellen,

I had written you the other day and don't know if you got the email. I

copied/pasted here and the part about procuring drugs is highlighted below.

Cindi

It's really tricky to understand all this stuff, especially since the

prevailing medical advice is usually based on incorrect information from the

Infectious Disease Society of America - they don't believe lyme disease can

become chronic and this is what they teach the doctors. Those of us on this

group, and others, know very different. That's why the docs only prescribe 2

weeks of antibiotics and usually of a dose that's not strong enough.

I'm not a big drug person - in this case, yes!!! Lyme is almost like 2

different diseases - the first is when it's in the acute phase - which lasts

about 2-3 weeks. During this time, lyme hasn't disseminated (moved) into the

system and if you take enough antibiotics (right dose; right amount) you can

knock it out. The generally accepted dose, prescribed by lyme literate doctors

(docs who really get it), is between 400-600 mg of doxycycline, taken for at

least 6 - 8 weeks. Lyme and the various other coinfections (other infections

that the ticks can give you at the same time and which can be equally

devastating), reproduce every 30 days, so you want to take antibiotics through

at least the first reproductive cycle.

You seriously don't want your lyme to become disseminated/chronic! That's

probably why your friend is getting so worked up - nobody who has this wants to

see anyone else get it at all and certainly not past the acute stage. Once it's

past the acute phase, it's almost a different organism. It becomes disseminated

and moves deeper and deeper into the body and brain (depending on what you got

with your tick bite). Antibiotics may or may not be effective at this point; the

lyme and coinfections are also able to hide and protect themselves. The

long-term physical and psychological damage can be devastating. That's what we

want to spare you from experiencing. If you want to email me directly, I can

send you some info from a couple of the lyme support groups about the illness

that will really explain it in detail.

Meanwhile, you can google for " no-prescription needed " drugs on-line (there's

one in Canada that I've gotten doxy from for just what you're going through) and

you can get enough to get you through the rest of the time. You can also take

some good probiotics to get your gut through this in some kind of okay shape.

Better to deal with that than chronic lyme.

Please take good care of yourself... and get this early and effectively. With

lyme, you only get one small, critical shot at treating it in the acute phase.

410-771-4994 O

443-980-7369 Cell

Re: [ ] Newbie here

>

> You probably could have waited until Monday. It moves fast, but not *that*

> fast.

>

> Ticks only feed (IIRC, someone will correct me if I'm wrong) three times

in

> their lives, once at each developmental stage. So you got to be the lucky

> provider of one of that tick's only three lifetime blood meals. Having

> feasted on you, it likely did not move on to chow down on anyone else.

>

> On the other hand, where there's one Lyme tick, there are usually many

more.

> Be sure to examine every member of your family thoroughly (even the scalp

--

> a lot of people get bit there and never notice due to the hair, which

ticks

> love to hide in); and do it once a week for the next few weeks to make

sure

> you don't miss a rash if one should come up. Also be alert to " flu "

symptoms

> during this time. Only 25% of us ever saw the rash, but the other symptoms

> were the tip-off.

>

> Also: it's easy to spot ticks in their adult phase, but very hard to see

> them in their nymph stage, when they're the size of a poppy seed. You can

> easily have one attached to you for days at this stage, and not notice it

--

> especially if it's somewhere you don't usually look at yourself, like your

> back or side or scalp. It's a safe bet most of us were infected by nymphs.

>

> Be sure you get *at least* two months of antibiotics. I know they probably

> gave you 28 days, but many docs will give you another month if you ask.

Ask.

> You don't want to mess around with " maybes " on this one.

>

> You're soooo lucky to have caught it this quick. (It took them 23 years to

> diagnose my case, by which point I was well and truly wrecked.) May your

> illness be a short one.

>

> Sara

>

> On Jun 6, 2010, at 9:26 57AM, elle68 wrote:

>

>> Hello:

>>

>> I just got diagnosed last night (Saturday) after noticing a rash on my

> side. I live in NJ and have spent some time in the parks ere, plus

recently

> spent time in my brother's backyard in Long Island, NY, which has tons of

> bushes and is surrounded by trees. So I don't doubt that I could have come

> in contact with a tick. However, the rash I have is on my right side in an

> obvious place where I would think that I would have seen a tick had it

been

> there for 48 hours. Is it common that people don't realize that they have

> been bit?

>>

>> Also, should I be worried about my family having been exposed as well?

> Since I didn't notice the tick, can I assume it ate its full and went on

its

> merry way and left my family alone or should I be worried it snacked on

them

> too?

>>

>> Also, on the practical side, has anyone been the ER to get diagnosed?

> While I know that it is important to be treated quickly, I am worried that

> my insurance will refuse to pay because I perhaps could have waited to see

a

> doctor, but my DR wasn't comfortable phoning in a prescription and I

didn't

> want to wait until Monday to be seen.

>>

>> Thanks!

>>

>> Ellen

>>

>>

>>

>> ------------------------------------

>>

>> Lyme Disease News continually updated from thousands of sources around

the

>> net: http://www.topix.net/health/lyme-disease

>>

>> MedWorm: The latest items on: Lyme Disease

>> http://tinyurl.com/23dgy8

>>