New here

July 20, 2003

true,

lymies can:

1)treat themselves with non prescription therapies

2)find and travel to an LLMD

3)go thru lot's of conventional docs looking for one that will take on lyme

those are the choices

>Carol,

>

>You said ... " That's why a REAL LLMD, not an infectious disease specialist,

>hematologist, rheumatologist, neurologist, etc! They claim to know about

>lyme, but they don't. "

>

>Please don't lump all of those categories into one non-LLMD pot because it's

>just not true. A rheumatologist did more for me than any other Dr. did.

>Some not only *claim* to know about Lyme but they actually do. Imagine

>that.

>

>I just hate to read posts like yours that run down every single Dr. that

>*you* think is not Lyme literate. Have you been to every single Dr. in the

>country? I think not. You are basically telling all the newbies and newly

>diagnosed, that unless they go to a specific Dr., and *not* a

>rheumatologist, neurologist, etc., they won't get well when you have no clue

>if that's really true.

>

>Everyone needs to do the research, ask the questions, and then make the

>choice that is right for them, not right for someone else. Some swear by

>natural products, others hate them. Some swear by antibiotics alone, others

>hate that idea. Obviously, some swear by one type of Dr. while others have

>found help from non-traditional Lyme literate specialties. We're all

>different and different things work for different people. Just because it

>worked for one doesn't mean it will work for you. Just remember that!

>

>Jean

>

July 22, 2003

I think all Carol is trying to say is that you will not find all LLMDs

in one specific specialist field, but in many, but not all in those

fields are LLMDs and all of you are saying the same thing as she is only

telling her that she is not but she is. She may just not be as clear as

you, I hope what I am saying is making sense.

Hugs, Michele

-----Original Message-----

From: Carol Kerr Sent: Sunday, July 20, 2003 2:08 PM

(snip)

That's why a REAL LLMD, not an infectious disease specialist,

hematologist, rheumatologist, neurologist, etc! They claim to know

about lyme, but they don't.

(snip)

July 22, 2003

You hit the nail on the head! Thank you for seeing what I was saying!!

Sorry for my lack of clarity... I'm in the middle of the biggest herx I've

ever suffered. I'm having a gallbladder attack on top of that! Had to go off

ABX till checked out by PCP, who won't see me till WED!! I am only eating

oatmeal and suffering the greatest pain throughout my body I've ever known!!

Oh yeah, I'm pretty miserable!

I'm losing it emotionally and mentally and probably should have kept my

mouth shut under the circumstances... but, I am passionately seeking to help

others avoid mis-diagnosis! The long term affects of this illness are

devastating!!

If I can point one person in the direction they need to go, to avoid years

and years of agony and specialists, who just don't KNOW about the 3rd Stage,

Chronic complications, like I've been through, I'm going to try.

I know, that if you keep treating the symptoms, but don't address the

disease, you'll wake up one morning at age 42 and wish you were dead because

the pain and confusion is too much for you to handle too. I could care less

which " specialty " the man studied, he needs to be LYME LITERATE!!!

Otherwise you are a guinea pig! It's not fair to you!

I apologize for any confusion I brought to this board. My words may be mixed

up, but my intentions are honorable.

Peace out!

Carol Kerr

-- RE: [ ] new here

I think all Carol is trying to say is that you will not find all LLMDs

in one specific specialist field, but in many, but not all in those

fields are LLMDs and all of you are saying the same thing as she is only

telling her that she is not but she is. She may just not be as clear as

you, I hope what I am saying is making sense.

Hugs, Michele

-----Original Message-----

From: Carol Kerr Sent: Sunday, July 20, 2003 2:08 PM

(snip)

That's why a REAL LLMD, not an infectious disease specialist,

hematologist, rheumatologist, neurologist, etc! They claim to know

about lyme, but they don't.

(snip)

July 22, 2003

>>>>>>>Carol is trying to say is that you will not find all LLMDs in one

specific specialist field, but in many, but not all in those fields are LLMDs

>>>

I'm sorry for the misunderstanding Carol,

Thanks for the clarification ..........

I guess that is how I read it too........its easy to misread posts.

Sorry for not understanding.

I agree...........LLMD's can be found in many different medical fields.

ConnieKnwnj

When our bodies & minds are out of balance.......

........we suffer!

July 22, 2003

<<<Sorry, for my lack of clarity<>>>

No, sorry for our lack of understanding

ConnieKnwnj

When our bodies & minds are out of balance.......

........we suffer!

July 22, 2003

My turn to ditto Connie's post. LOL! I read your post wrong also Carol.

LLMD's do come in 'all varieties' and aren't just in one specific field.

Sorry about jumping with both feet so hard but I wanted everyone to know

that looking for a Dr. in just one area was not a good idea.

Sorry!

Jean

Re: [ ] new here

> I'm sorry for the misunderstanding Carol,

> Thanks for the clarification ..........

> I guess that is how I read it too........its easy to misread posts.

> Sorry for not understanding.

> I agree...........LLMD's can be found in many different medical fields.

>

> ConnieKnwnj

> When our bodies & minds are out of balance.......

> .......we suffer!

July 22, 2003

no harm done!

Carol Kerr

-- Re: [ ] new here

My turn to ditto Connie's post. LOL! I read your post wrong also Carol.

LLMD's do come in 'all varieties' and aren't just in one specific field.

Sorry about jumping with both feet so hard but I wanted everyone to know

that looking for a Dr. in just one area was not a good idea.

Sorry!

Jean

Re: [ ] new here

> I'm sorry for the misunderstanding Carol,

> Thanks for the clarification ..........

> I guess that is how I read it too........its easy to misread posts.

> Sorry for not understanding.

> I agree...........LLMD's can be found in many different medical fields.

>

> ConnieKnwnj

> When our bodies & minds are out of balance.......

> .......we suffer!

August 18, 2003

Toni it sounds like you have your hands full with your two girls. I'm Angie and

have a 3 yrs old dd with Down syndrome and possible apraxia...I'm on this

learning journey myself and getting ready to reach out here for some other Ds

parents...I want to jump in to this full force. Sydnie started reg preschool (2

yr old class) 2 weeks ago and will start another program tomorrow. She signs

and has a quite a few words but alot comes out in one syllable. Hang in there

it has to get better for all of us.

~Angie

May God Bless You As He Has Us

www.babiesonline.com/babies/s/sydniebrooke

mom to Sydnie (3, Ds), 3 angels in Heaven

http://www.earningforce.com/go.cgi?sydniesmom5

[ ] New here

It just occured to me that before my computer went haywire, I hadn't sent my

intro to this group. :-) So here it goes:

My name is Toni. I'm a stay home mom to Hope and Faith. Hope was born 4

weeks early but was totally healthy and came home like any other baby. She's

now 3 and has been Dx with Seizure disorder with verbal apraxia, and Migraines.

Her neurologist is convinced that her seizures and her apraxia are interlinked

since she was talking wonderfully up until she had her first grand mal seizure

at 14 months old. Then it was like someone pulled a plug and she couldn't

speak. Not even babble for the longest time. Now she says about 30 words that

are decipherable, but she only says part of the word. She's just now beginning

to say more than one syllable, and she has to think about the second part before

it comes out. Her seizures are controlled now with meds so we're hoping the

longer she goes without a seizure the more her speech will improve. Each time

she has one she backslides a bit. For example about a year ago she had a

wonderful " L " sound. Now she can't say any " L " s at all. We're in the middle of

the transition from our local Early Intervention speech therapy to the

Intermediate Unit speech therapy. They weren't actually going to start this

transition with her until next month, but her speech therapist went into

pre-term labor a few weeks ago and just had the baby last week.

Faith was born 5 weeks early and spent time in NICU on a vent and on a bunch

of drugs getting her ready to go home. She'll be 2 in October. She's been Dx

with Hypotonic Cerebral Palsy, Speech delay, Cognative Delay, and Asthma. She

gets OT and DT from the EI here, and once her speech therapist comes back from

maternity leave she'll be restarting ST as well. She actually has more

understandable words than her older sister does, which floors people since Faith

has the cognative skills of a 9 month old.

But the two girls play together great, most of the time. lol Up until Hope

was Dx I had never heard of apraxia and knew nothing. Then I spent days reading

everything I could find on the internet learning what I could. The hardest part

is trying to talk to people about it. Even other parents who have children with

speech delays, a lot of them just dont get how difficult it is for kids like

Hope. Of course most of them have children with speech delays and it's a mild

form, like they have trouble with a few sounds but they can communicate well in

general. Hope does sign on some things that she just can't say, but she's very

determined to talk and unless she just can't get her point across she refuses to

sign. Which results in me having to translate what she's saying to other people

since she only says parts of words. The big challenge right now is preschool.

I've been considering homeschooling her, but her developmental therapist thinks

she needs something with a little more intense structure right now. We're

waiting now to get the evaluation from the Intermediate unit about sending her

to thier preschool. Locally we've found 1 preschool that can handle her

communication problem, and it's so expensive we'd have to hit the lottery to

send her.

Most days we spend a lot of time working with Hooked on Phonics trying to help

her combine sounds a little better, and doing crafts since she's a very artsy

kid.She does like Noggin's programming and she'll sit and do the alphabet, count

and everything with them. It just gets frustrating that when I'm doing

something with Faith that if she can't get her point across as to what she

wants, she whines and throws a fit. Lately she's starting pulling her sister's

hair out in big clumps too. Days like that I just dont know what to do with her.

There have been days that when I send her to her room for a time out, it's like

that's all she does that day is sit in there. I'll get her out of a time out

and within 10 minutes she's back in another one. I'm just at the end of my

rope.

Hope to hear from you soon

Toni

August 18, 2003

Oh Toni, I know where you are coming from. I remember those days way too

well!! But please keep your chin up & know that this too shall pass. It

will get better. My apraxic son is now 5 & doing much better than I ever

expected. At age three he was dx verbally at the age of a 6-9 month old.

Big blow, I knew there was a problem just not that much of a problem.

is my 4th child, born almost 4 weeks early. He was failure to thrive,

jaundice, reflux, breathing problems, etc. Yet he came home & no one

realized he had any problems. Just thought his paranoid mother wasn't

nursing him enough. Not that he was so jaundice that he wouldn't even wake

up & when I did get him to nurse then everything would run right out his

nose??? We are no longer with that doctor by the way!! And I have finally

put that guilt trip to rest. But what I would like to say here is that

after 2 1/2 yrs of speech therapy with a therapist that knew about apraxia &

supplementing with Pro EFA is now talking in 5-6 word sentences.

Articulation is still a big issue & there are still a lol more things to

tackle but we no longer have the frustration that he had when he was

younger. just started a mainstream kindergarten a couple of weeks ago.

We are having some problems adjusting but I think it is getting better.

did a Communication Disorder PreK with our county school system last

year at age 4 & did wonderful. It was taught by a slp along with 2 aides.

There were 15 kids in the class with being one of the most delayed. He

really blossomed socially during the school year. I just only hope that

this year will be as successful?? Not sure he is ready, but we are moving

forward.

It is so hard when they are young & so frustrated. Hang in there, this

group will help you through every step of the way. Not sure what I would

have done without it?

Tammy I. in FL mom to 5 apraxic, 7, 18 stuttered severly

as young child, & 22

PS think of it this way, when was a baby I had a infant, toddler &

teens. And somehow I survived, of course there were days I really

questioned if I would survive!!

From: " Toni Wells " <mommybizz@...>

Reply-

< >

Subject: [ ] New here

Date: Mon, 18 Aug 2003 11:25:07 -0400

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August 18, 2003

Toni,

Welcome!

Assuming you are in the US. Your school district has to provide an

appropriate education for your kids. If it means out districting then

get your ducks in a row and have them pay.

denise

The big challenge right now is preschool. I've been considering

homeschooling her, but her developmental therapist thinks she needs

something with a little more intense structure right now. We're

waiting now to get the evaluation from the Intermediate unit about

sending her to thier preschool. Locally we've found 1 preschool that

can handle her communication problem, and it's so expensive we'd have

to hit the lottery to send her.

>

August 19, 2003

Yep I'm in the US. But unfortunately preschool is considered optional and they

only have to provide appropriate education that the law requires. And the law

here in PA technically doens't require children to be in school until age 8. So

anything before that the school district is of the opinion they dont have to, so

they wont. Now if she is enrolled in Kindergarden when she's 5, then they'll

start working with her becuase she's in the system already and that would be

discrimination if they dont. So until she's 5 we're on our own. Luckily the

county has wonderful programs for younger kids with their therapies, they're

teamed with with ARC and United Cerebral Palsy.

Toni

[ ] Re: New here

Toni,

Welcome!

Assuming you are in the US. Your school district has to provide an

appropriate education for your kids. If it means out districting then

get your ducks in a row and have them pay.

denise

August 19, 2003

Hi Toni,

I am also in PA and as soon as my daughter turned three(which was in May)

the Early Intervention stopped, but then the School district Intervention

took it's place. We developed an IEP immediately and she went to summer

session therapy in July and then they are paying for her preschool in which

she will receive speech therapy during school sessions which starts in

August. They also offer alternative speech group in which they do fun

activities and speech therapy in a group setting, if I had decided not to

send her to the preschool that I chose. I am not sure if the rules are

different in different counties or not, I would think it would be the same

throughout the state. But the school district should automatically pickup

when early intervention ends.

in PA

Re: [ ] Re: New here

Yep I'm in the US. But unfortunately preschool is considered optional and

they only have to provide appropriate education that the law requires. And

the law here in PA technically doens't require children to be in school

until age 8. So anything before that the school district is of the opinion

they dont have to, so they wont. Now if she is enrolled in Kindergarden

when she's 5, then they'll start working with her becuase she's in the

system already and that would be discrimination if they dont. So until

she's 5 we're on our own. Luckily the county has wonderful programs for

younger kids with their therapies, they're teamed with with ARC and United

Cerebral Palsy.

August 19, 2003

Your school district should be providing early childhood services starting at

the age of three.

" FREE APPROPRIATE PUBLIC EDUCATION - In order to comply with the federal

mandate (Public Law 102-119, known as the Individuals with Disabilities

Education Act, Part B (34 CFR Parts 300 and 301 and Appendix C) that all

disabled children receive a free appropriate public education, a school district

must provide special education and related services at no cost to the child or

her/his parents " .

You can request a full case study to be completed by the school district. After

the case study is done, an IEP meeting is scheduled and determination for

special education is made. If your child is eligible for services, a plan

should be developed and placement should be determined. Many school district

will attempt to blow off parents hoping they will go away, however, they are

responsible for providing special education serves from the age of 3-21 if

needed (this is a federal mandate which all states need to comply with) .

Contact the special education director and request a case study in writing, they

have about 10 days to notify you on their decision to conduct the case study.

Once you give written consent, they have 60 days to completed the evaluation.

If you don't have luck with the director, contact the superintendent and share

you concerns (or cc you request for case study to the superintendent). I am

familiar with this process as a parent and a professional...I am a

school psychologist and a special education facilitator.

GOOD LUCK

Toni Wells <mommybizz@...> wrote: