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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

>

>

>

>

>

>

>

>

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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)

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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)

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>>>>>>>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!

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

No, sorry for our lack of understanding :)

ConnieKnwnj

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

........we suffer!

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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!

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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!

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  • 4 weeks later...

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

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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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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.

>

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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

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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.

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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:

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

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Hi Toni...My name is Mandy and I was just reading one of your posts and saw

that you live in Westmoreland County. We are not to far from there,well closer

then I've seen anyone else post. We are just across the border in

Ohio,Mahoning County.

It's really nice to see someone so close.

We are taking our son to see a SLP who specializes in Apraxia on Sept. 18 in

Cranberry.

My son,, is also 3 years old. He was Dx with Apraxia in June of this

year. is otherwise a " normal " and very,very active 3 year old boy except

for the fact that he can't speak.

We are also in the process of dealing with our school district. I'm filling

out paperwork on getting him an IEP. Are you running into any problems? My

school district tried to blow us off the first time that I called. They told me

that they never heard of helping a preschool age child, but then I called back

and they're willing to help now. I have no idea what lies ahead with the

help,because the principal doesn't know what kind of help is available for

.

This is his first preschool IEP.

You do find alot of info reading the posts on this, I very rarely post

anything. I manly just read and gather info and don't feel I have the experience

or

expertise to respond to anything. But feel free to email me, it might help to

have someone to talk to with a child the same age.

Hope to hear from you.

Mandy

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  • 1 month later...

Thanks ,

I will be seeing the Rheumy again in a month and will be talking to

him

about pain management. Tylenol with Codeine DOES NOT work for me.

I've taken that many times for surgeries, etc and it's like taking a

life saver. I do have percacet but try to limit it as I am paranoid

of becoming addicted to any med's.

I just started to take the sulindac tonight and will see if/how that

helps. I end up taking tylenol pm every couple of nights in order

to get some sleep. The med he perscribed for me to sleep at night

makes me sick the next day, so I forgo it. It is Trazadone.

Will see what happens with time and patience. But yes, I do suffer

from pain more than I would like. Hence the reason I was sure from

the previous diagnosis that it was Fibromyalgia. I never knew there

could be something like this with a name. Am I ever learning.

Thanks for listening.

Q.

[Editor's Note: Quyrah, you're most welcome. I'm glad to hear that you have

access to a good pain med when you need it. (Incidentally, addiction is very

rare in people with legitimate need for such meds; talk this over with your

docs.

In reading I've done on Trazedone, many people have had one problem or another

with it (nausea, weight gain, insomnia, etc.) Would he consider letting you have

Ambien? That drug seems pretty well-tolerated.

Good luck.

D.]

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  • 1 month later...

Welcome to the group !! I'm Missy and mom to five kiddos. My 14yr old

son, 4yr old son and 2.5yrold daughter all have AS with associated problems

as well. This is a great group and if you have any questions just ask. There

are a lot people here with years of experience.

MISSY

SAHM to some special kids!!!

Excuse Me While I Go

Raise Tomorrow's Future.

( ) New Here

> I just joined today....actually found this group when I was

> researching AS today.

> My name is R. Live in Ny state w/my husband, Steve, and our two

> boys, and .

> just turned 4 years old last month. Back in April he was

> evaluated for preschool and they made the discovery that he had

> problems. One of the girls told me possibly Aspergers and ADHD. He

> was sent for a medical evaluation in October....where they determine

> what is wrong and its now in his medical records. He was diagnosed

> Aspergers Syndrome with an associated disorder of attetion and

> associated disorder of sensory processing. Kind of hard to deal with

> but glad to finally have answers. My husband and I always felt

> something was wrong but we figured it was just ADD or ADHD....Then

> the AS came up....which felt that moment of truth for myself too as I

> have the same sensory issues and had that lack of social skills

> growing up.

> my other son is only 9 months old. No clue if he will have the

> same problems or not. He had a 9 month check up yesterday and the dr

> commented that cried around strangers -she told me that was

> perfectly normal and said if he is doing that he might not have the

> AS like my other child.

>

> so, thats what brings me here..to learn as much as I can and feel

> like I am not alone....

>

> ~~ :)

>

>

>

>

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Hi ! Welcome to the group! My name is Hunt! I have a

normal 12 year old, normal 6 year old and an AS 10 year old(boy,boy,

girl) Great site to gain knowledge and help! Even feel free to

complain , gripe and let it all out! My AS Daughter has AS, ADHD,

ODD and PDD. She has some sensory integration problems but most of

them she has grown out of.. I guess! It is all a learning process!

Nice to meet you! Have fun and join in!!

Steph from Dallas , Texas

> I just joined today....actually found this group when I was

> researching AS today.

> My name is R. Live in Ny state w/my husband, Steve, and our

two

> boys, and .

> just turned 4 years old last month. Back in April he was

> evaluated for preschool and they made the discovery that he had

> problems. One of the girls told me possibly Aspergers and ADHD.

He

> was sent for a medical evaluation in October....where they

determine

> what is wrong and its now in his medical records. He was diagnosed

> Aspergers Syndrome with an associated disorder of attetion and

> associated disorder of sensory processing. Kind of hard to deal

with

> but glad to finally have answers. My husband and I always felt

> something was wrong but we figured it was just ADD or ADHD....Then

> the AS came up....which felt that moment of truth for myself too as

I

> have the same sensory issues and had that lack of social skills

> growing up.

> my other son is only 9 months old. No clue if he will have

the

> same problems or not. He had a 9 month check up yesterday and the

dr

> commented that cried around strangers -she told me that was

> perfectly normal and said if he is doing that he might not have the

> AS like my other child.

>

> so, thats what brings me here..to learn as much as I can and feel

> like I am not alone....

>

> ~~ :)

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<<They have the same issues for the most part, but it

comes out so differently. As an infant one was high needs the other

so easy going I was shocked.>>

Now that things are " coming together " for us, I really wonder about my (older)

mellow baby child. He was just ultra mellow. First time he cried for more than

a few minutes was after his 4 month shots. He seemed very content. OTOH The

other day he was taking so long in the bathtub with anxiety about rinsing his

hair that I told him he couldn't watch Star Trek (it's be over), and *that* made

him burst into tears.

I am getting increasingly concerned about my younger one the more I read about

AS. He does not make friends, and does not play with anyone at recess. He

seems happy with just walking around, probably playing some story in his head.

He needs to be the boss. And he has a voice modulation problem. ;) There are

a few people at regular places we visit that he will interact with, but not like

the other kids.

In hindsight, I see some of that in my older one, too (who at this point would

be termed PDD-NOS). He will go up and play with anyone, anywhere, as long as

they don't talk about Rugrats or Sponge Bob or Mickey Mouse. But it's the

longevity thing that gets him in trouble. After a while when the obvious play

options (such as at a park) are exhausted, he doesn't always know what to do.

Or the next time he goes to that park, he absolutely wants that same child to be

there. And is upset when it doesn't happen.

I was just reading a website that was information for teachers about AS, and

so many of the things were reminiscent of older son. Some subtle, but almost

all of them were there. Especially since he has recently given up jeans in

favor of sweat pants. We'll still have days that are warm enough for shorts,

but I need to buy some more sweat pants. I already bought his elastic waist

shorts for next summer off the clearance rack at KMart for $4 each.

The one thing that really caught my eye about schooling and my younger son is

that he insists on finishing things. So unlike his mom and dad. LOL I remember

when he was younger I had to discourage him from starting puzzles if we were

heading out soon because he could not handle leaving with a puzzle half-done.

(He is very, very good at puzzles, so they don't take all that long, but...) He

has gotten in trouble several times for not putting a unfinished worksheet away

when it was time to move on to something else. He's a wiggle worm, but he is

dedicated to getting his work done.

We go back to the psychiatrist next week with completed questionnaires from my

older son, DH and I, and his teachers. So hopefully we can find even more

direction on some treatment strategies. I have to admit this is really

stressful right now.

Jackie

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Ditto! My oldest has never met a stranger. My youngest is cautious.

Both are PDD. They have the same issues for the most part, but it

comes out so differently. As an infant one was high needs the other

so easy going I was shocked. One hit most of the milestones on time

and then started to get behind. (say around 18 months) The other was

always slow on milestones. One is loud. One is quiet. Yet both have

speech, social, fine motor, and self help issues. a

> As for the crying around strangers being a sign he isn't AS, I

wouldn't count on that at all! My 14 yo cried around anyone who

wasn't me, dad or his sister from birth. I remember asking the doc

at his 3 month check up why he cried whenever anyone held him. He

would later be dx'd with HFA. It's less to do with " stranger

anxiety " than with it happening at the appropriate age range and not

lasting 14 years. <g>

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When Zach was an infant/toddler we used to say he could pick a friend or

enemy out of any crowd. If he didn't like someone there was usually a really

good reason, tho we may not have known what it was right away. My 4yr old

and 2.5 yr old are the same way, now.

MISSY

SAHM to some special kids!!!

Excuse Me While I Go

Raise Tomorrow's Future.

Re: ( ) New Here

> Ditto! My oldest has never met a stranger. My youngest is cautious.

> Both are PDD. They have the same issues for the most part, but it

> comes out so differently. As an infant one was high needs the other

> so easy going I was shocked. One hit most of the milestones on time

> and then started to get behind. (say around 18 months) The other was

> always slow on milestones. One is loud. One is quiet. Yet both have

> speech, social, fine motor, and self help issues. a

>

> > As for the crying around strangers being a sign he isn't AS, I

> wouldn't count on that at all! My 14 yo cried around anyone who

> wasn't me, dad or his sister from birth. I remember asking the doc

> at his 3 month check up why he cried whenever anyone held him. He

> would later be dx'd with HFA. It's less to do with " stranger

> anxiety " than with it happening at the appropriate age range and not

> lasting 14 years. <g>

>

>

>

>

>

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Interesting...well I guess I will keep an eye out on my baby

too.....I have picked up on how different he is from when my oldest

was a baby... hated to be cuddled - loves it. didn't

mind playing by himself.... loves to play w/me and .

fussiness, crying, etc.....just so much difference..... Of course,

now I am reading the Out of Sync child book - can be AS or PDD,

etc but different issues w/ hyposensitive, hypersensitive, etc....

guess time will tell to see how he is -glad to know I can look for

certain things....

mary

> Ditto! My oldest has never met a stranger. My youngest is cautious.

> Both are PDD. They have the same issues for the most part, but it

> comes out so differently. As an infant one was high needs the other

> so easy going I was shocked. One hit most of the milestones on time

> and then started to get behind. (say around 18 months) The other

was

> always slow on milestones. One is loud. One is quiet. Yet both have

> speech, social, fine motor, and self help issues. a

>

> > As for the crying around strangers being a sign he isn't AS, I

> wouldn't count on that at all! My 14 yo cried around anyone who

> wasn't me, dad or his sister from birth. I remember asking the doc

> at his 3 month check up why he cried whenever anyone held him. He

> would later be dx'd with HFA. It's less to do with " stranger

> anxiety " than with it happening at the appropriate age range and

not

> lasting 14 years. <g>

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  • 3 weeks later...

Hi Nichole and welcome!

Many of our children were also tested for syndromes -and pretty much

all of us had results that came back negative. And even cases where

the results are positive -most here have children that are doing

really well! So just get a good's night sleep and remember it's

going to be OK tomorrow no matter what!

You will really want to contact Tricia Morin from NC

morinfamily4@... morinfamily4 at nc.rr.com -she runs the

military parents support group (since she knows all about therapy on

military bases etc.) Tricia is also one of the moderators here at

CHERAB, and for Speechville.com, and co founded SPEAK of Missouri

(before she moved to NC!)

This link is about Tricia's son written by Hoffmann M.A., CCC-

SLP, President of the Missouri Speech Language Hearing Association

http://www.cherab.org/information/silentnomore.html

On a side note -since Dade's has had chronic ear infections -you may

want to explore schooling him at schools for the hearing impaired

(not due to any hearing loss -but you'll have a better reason to get

into one of these awesome programs!) Many of us -including me, had

children with normal hearing who did incredible at preschools for

the hearing impaired. There is a program now that is called the

Association Method that is a school also based on the principles of

teaching hearing impaired children (multisensory)

My son Tanner's link

http://www.cherab.org/information/familiesrelate/letter.html

Let me know if you want more info. Well nice to meet you!

=====

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Welcome Nichole! Good luck tomorrow and good luck with the little one on

the way. KIM

[ ] New here

> My son, Dade just turned 2 on Sat (nov 29). His speech development was

last evaluated last tues at 14-15 months. Which is an improvement from when

we started our journey into Early Intervention and therapy. Tomorrow is our

recheck with the developmental ped. It's been 6 months. In the developmental

ped's eval from 6 months ago he said that if Dade didn't show improvement in

6 months he would want to test him for fragile X. So tomorrow is the big

appointment. His speech therapist is thinking Dade has oral apraxia. The

developmental ped also mentioned this to us at his first appointment. So

another possible outcome of tomorrow's appointment is that the doctor will

put in for more speech therapy besides what he is getting at EI. Which might

really be a good thing. If this is the case the insurance will hopefully

cover clinical therapy. The EI program here is a home program. Dade also has

tubes from chronic ear infections but that all has been ruled out as far as

his speech delay. The delay was there before the ear infections, his hearing

tested fine and he has had the tubes since May, so it would have been

resolved by now if it was do to the ears. Also tomorrow we will be starting

the paperwork to make him officially special needs to the military.

> Nichole

> Proud Navy wife to

> Proud mom to Dade 11/29/01

> Proud mom-to-be to ??? EDD 2/8/04

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Hi Kathy,

Welcome to the group and the fight of the body snatchers! I am sure it truly

seems like someone has taken various parts of your body and replaced them

with painful replacements that don't fit right, then cruelly decorating them

with

the king of rashes??????

I too have been diagnosed with RA, PA, Sjorgrens, etc. Basically our

autoimmune system is fighting us. I am sorry you have been recruited.

Please keep in touch with this group, and do not hesitate to ask questions.

They are all truly amazing people, who will help educate, and commiserate with

you, because we are all there in various forms as well.

Gentle Hugs & Prayers,

Carol M.

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