New here

July 30, 2009

Visit with the neuorologist would be a great idea. My son has a seizure

disorder, and rapid eye blinking can be a type of seizure called Absence

Seizures. These can be blank stares or blinking repetively. They usually last

less than 10 seconds. You may want to have the doctor rule this out.

Best of luck to you and yuor family.

>

> Hi, all. I'm new here. I have a three-year old son, who has not yet been put

on the spectrum. I say not yet, because he is showing some fairly good social

skills, interaction, etc. But he does have " autistic features. " That aside,

Jake's SLP has mentioned possible apraxia, but because of his age, from what I

understand, that would be hard to diagnose. In any event, my son has not yet

seen a neurologist, which I believe he should, not only because of his speech,

but also my concerns with this strange blinking thing that he occasionally does.

>

> My question is what neurologist to see? And can a neurologist diagnose

apraxia?

>

> Because I live in the Washington DC/Baltimore area, the two names that come to

mind are Dr. Mott with town and Dr. Zimmerman with Kennedy

Krieger. Jake has been to Kennedy Krieger several times to see a developmental

pediatrician.

>

> Does anyone have any opinion on either of these doctors or perhaps a

recommendation other than these two?

>

> Also, one of the problems with my son's speech is that his pronunciation can

change with the same word. Is this a sign of apraxia?

>

> Thank you in advance!

>

> Debbie

>

July 30, 2009

Hi Debbie,

I've heard good things in general about Dr. Mott (but can't vouch personally

since we ourselves have never seen him). Since you're in the DC area, I'd

recommend joining the GreaterDCAreaApraxiaSupport group. There are

parents on there, some of them also members of this and other apraxia boards,

who might also be able to help. Good luck!

Mom to 3 year-old twins, and Cecilia

From: jakebaby0413 <dbenfield@...>

Subject: [ ] New Here

Date: Wednesday, July 29, 2009, 1:18 PM

Hi, all. I'm new here. I have a three-year old son, who has not yet been put on

the spectrum. I say not yet, because he is showing some fairly good social

skills, interaction, etc. But he does have " autistic features. " That aside,

Jake's SLP has mentioned possible apraxia, but because of his age, from what I

understand, that would be hard to diagnose. In any event, my son has not yet

seen a neurologist, which I believe he should, not only because of his speech,

but also my concerns with this strange blinking thing that he occasionally does.

My question is what neurologist to see? And can a neurologist diagnose apraxia?

Because I live in the Washington DC/Baltimore area, the two names that come to

mind are Dr. Mott with town and Dr. Zimmerman with Kennedy

Krieger. Jake has been to Kennedy Krieger several times to see a developmental

pediatrician.

Does anyone have any opinion on either of these doctors or perhaps a

recommendation other than these two?

Also, one of the problems with my son's speech is that his pronunciation can

change with the same word. Is this a sign of apraxia?

Thank you in advance!

Debbie

August 3, 2009

Thanks, ! I'll do that. I found out last week that Mott is leaving the

area. My son does have an appointment with his developmental pediatrician in

two weeks, who I didn't realize was a neurodevelopmental pediatrician. I guess

I'll start there.

Thanks again.

Debbie

August 4, 2009

Do an internet search of the definition of facet arthopathy and cervical

spondylolisthesis.

It's painful bone spurs and degeneration which is " drying out " and has caused

one vertebra to slide forward out of alignment , thus causing pressure on nerves

and spinal cord.

--- Babbitt

________________________________

From: sharron <satyrrell@...>

spinal problems

Sent: Monday, August 3, 2009 7:33:51 PM

Subject: new here

My name is Sharron ...

I am new here and have just been diagnosed with advanced arthritis in the neck.

I had had apin on and off since January but since it wasn't constant I stupidly

didn't have it looked at. Recently it was hurting all the time. I went to the

doctor and was sent to the hospital for x rays. The diagnosis came back as, I

have no idea what allthis means so I am going to write what was on the paper

from the Dr who read the x rays.

Findings: Five views obtained demonstrate anterolisthesis of C5 on C6 by under

one-quarter vertibral body width, with remaining vertibra anatomic. Mild

narrowing of the disk spaces is present at c3-c4 and c4-c5. Advanced bilateral

facet arthritis is present with facet joint narrowing and hypertropic changes,

most severe from the c2-c3 to c5-c6. Bilateral foraminal narrowing is present

involving upper foramen.

Impression: Advanced bilateral facet arthritis with degenerative anterolisthesia

of c5 on c6.

I have not a clue what all of this means I have been set up with an appointment

with a ortho surgeon next Wednesday but I sure would like to get and idea of

what to expect. I am 64 years old, female and have been exercising by walking 2

miles to and back from the post office most days and on the days when I don't

walk I go out on the lake in my kayak for about an hour ...

thank you for allowing me to join your group .. it is scary not knowing what to

expect.

August 4, 2009

Thanks you so much ... I already know more with your help. I will do the

search ... Sharron

>

> Do an internet search of the definition of facet arthopathy and cervical

spondylolisthesis.

>

August 12, 2009

hey dara...my name is laina i just started on this site as well...i know what

you mean about these test coming back neg but our kids having these crazy

symptoms its really ard for me because my daughter is only two and lots of times

i'm not sure what is the truth and what she is complaining about for

attention..i dont know anything about the dr that you mentioned but i have heard

of dr jones in ct. and he sis supposed to be spectacular and i have heard that

he will tell you honestly if he doesnt think it's lyme.... that means alot to

me... i dont want to pump my kids with antibiotics for months if i dont have

to only one of my bands came back positive from the local lab but the dr said

its almost a " sure thing " if you start taking the meds and feel really bad... it

means the meds are killing them in mass quantities and your body is trying to

get rid of all of the toxins.... but eventualy youll start to feel better it's

only been a week on the meds for

me and i am NOT myself but i am way better than day 2 of meds that was

horrible!!i have heard good things about igenex... i called them yesterday and

ordered a kit for myseld and one for ea of my kids you have the blood drawn

locally and then mail it back to them and its $100 per western blot ....i am

gonna do it.. i just can't see treating them with out an actual tick or bulls

eye... i just dont know for sure and i hate to put them on meds... i think the

igenex testing will give me a little peace of mind and who knows if it comes

back negative and the symptoms continue ....i'll treat em anyway i guess.i never

knew much about lyme and it seems like the more i research and lear the more it

seems to be a really gray area and i am a blcka nd white kind of person ..... i

hate not having definate answers you know...? Frustrating...Sorry for all of

theser typos it's nap time for my daughter and i plan to do 1 million things in

the next half hour!!! :)so i am

gonna run sorry i am not super educated on this but i can relate if that helps

at all...

also one last thing.. i am finding this bloggin thing great for info but i am

trying not to read it every day because it can kind of make ya crazy about it ya

know??

enjoy your daypeacelaina

From: darabeth2003 <dara.alewine@...>

Subject: [ ] New here

Date: Tuesday, August 11, 2009, 9:47 PM

Hi, I am new here. I wrote a little of my story in response to

another post, but here is a little longer version with some questions.

I got bloodwork back yesterday and the doctor says I am " borderline positive " .

The test in positive and the Western Blot is negative. From what I can

tell there is one band on the Western Blot that is positive. I don't even know

really what that means yet, as my PCP emailed me- did not even call me about it.

About 4.5 years ago, when I was pregnant with my second child, I had a tick bite

and insisted on getting tested. At that time, the test came back equivocal

and the Western Blot was negative. They told me I was negative, and I did not

think more about it. I got out the old results and the same band in the Western

Blot that is positive then, is the band that is postitive now.

Over the past several years, I do have some unexplainable symptoms- some

inflammation and pain to the touch in my legs, developed asthma. tired all of

the time, and some mental fogginess, low enegery but chalked that up to being a

mom to 2 little kids, one with developmental delays. Which brings me to my now 6

year old son. He has been diagnosed with low muscle tone (no cause can be

found), global motor delays, motor planning issues, sensory issues, and used to

wake up crying about pain in his legs, and more recently has increased anxiety,

and OCD-like symptoms, sleeping issues and temper tantrums. he also has muscle

spasm in his neck, with recurrent torticollis. Some of this can be part of

dyspraxia (motor planning), and he was born with a torn neck muscle, so never

thought of lyme for him, until yesterday when I was researching for myself. As a

baby I remember he had a rash on his bottom that the dermatologist tested for

lyme and told me it was

negative. Again, never thought anything else of it. He did have a tick bite

about a month ago. The hairdresser found it when he was getting his hair cut. It

was not embedded yet.

So I don't know if I have lyme, and if I do, whether it is new and in early

stage or a flare-up of something I have had for years. I would think my daughter

would have it's fairly mild. I know now my son has to get tested as a rule-out

process.

Here are some questions:

-If my son does have lyme, are there other antibiotics than amoxicillan that can

treat it? He is allergic to amoxicillan, and also had a questionable reaction to

omnicef.

-I read on some post that starting the antibiotics can make you feel worse?

Because I am on day 3 of doxicyclene and feel like crap- much worse than before

I started the med. I started probiotics tonight and made an appt for acupuncture

for next week too.

- Has anyone seen Dr. Streit in New Jersey either for adult or pediatric?

Please email me off-line if you are not comfortable posting about him.

-Does Igenex ever come back with negative results? I had someone tell me today

they always come back with some positive result. What do they do differently

that a test may be postive, when regular testing comes back negative?

If you are still reading this, thanks so much.

Dara

August 12, 2009

A couple short answers.

> -If my son does have lyme, are there other antibiotics than

amoxicillan that can treat it? He is allergic to amoxicillan, and also

had a questionable reaction to omnicef.

Yes. My daughter is also allergic to amoxicillin, but tolerates

minocyclene (Minocin) well.

> -I read on some post that starting the antibiotics can make you feel

worse? Because I am on day 3 of doxicyclene and feel like crap- much

worse than before I started the med.

Yes. The term for this is herxheimer reaction. I'm sure others can

explain this better than I can.

August 12, 2009

Yes there are several other kinds of antbs...when you say " allergic " what does

that mean? It's probably actually a Herx reaction to the antb from the Lyme.

Re: [ ] New here

A couple short answers.

> -If my son does have lyme, are there other antibiotics than

amoxicillan that can treat it? He is allergic to amoxicillan, and also

had a questionable reaction to omnicef.

Yes. My daughter is also allergic to amoxicillin, but tolerates

minocyclene (Minocin) well.

> -I read on some post that starting the antibiotics can make you feel

worse? Because I am on day 3 of doxicyclene and feel like crap- much

worse than before I started the med.

Yes. The term for this is herxheimer reaction. I'm sure others can

explain this better than I can.

August 25, 2009

Oh, Debby. How heartbreaking to read. Was the virus identified or just a

routine virus? Many describe improvement with fever like you say; some even to

the point of being asymtomatic.

I would investigate anti-viral supplements. Olive Leaf Extract, Lysine, Oil of

Oregano. I know how hesitant you are to supplement without direction. Also,

look in to anti-inflammatory foods and supplements (flax seed oil if no fish?

Vitamin E, curcumin).

I hope you have an open-minded and knowledgable neurologist involved. I guess

I could be way out there suggesting all of the viral/inflammation angle... maybe

run viral titers?

And no more Tylenol! Just Motrin. Acetaminophen depletes glutathione which our

bodies use to flush toxins plus it is hard on the liver.

Ask as many questions as you need. I'm sure someone here has been down a road

similar to yours (mine was vaccines).

Pam

>

> I thought I'd introduce myself and say hello! I hope everyone will forgive the

novel to follow:

>

> We have a 2.5 yr old daughter who is not yet diagnosed but whom I believe is

mildly autistic. She communicates and makes observational comments (that's a

blue car) and appropriate requests (I want a drink of water, I need to wear it)

but does a lot of scripted and repeated phrases ( " two dogs sitting in the mud, "

over and over). She looks for objects to bang together or claps her hands

whenever she's not engaged in an activity or if she's upset. She makes somewhat

odd facial expressions and waves her fingers near her eye when she talks. She

doesn't wave hello or goodbye and doesn't respond to her name. She doesn't

follow or seem to understand directions very well. She seldom cries but does

high pitched screaming when upset. Some days she is better than others. She had

a fever a few days ago and improved remarkably. She was developing normally

until about 6 months ago, following a bout with a virus as well as a yeast

infection. Before this she was quite bright and seemed ready to start toilet

training. She would respond to me calling her with " I'm here, mama! " Now toilet

training seems out of the question and I'm not entirely sure she knows her name.

With the GFCF diet, removal of soy, sugar and yeast from her diet, and focused

attention she has gone from almost no talking, no singing and no interest in

activities other than staring blankly at books, banging sticks and wrapping

herself in a blanket to the language I described, a return to singing and

interest in other activities and enthusiasm in interactions with family members.

She was never vaccinated and has received no medication other than children's

Tylenol throughout her life. She has been a vegetarian from birth (no fish,

poultry, dairy or egg products). Her teeth are quite healthy (no cavities or

fillings). She was born at home (breech)with brief anoxia during delivery but

was conscious and alert after birth. Other than doing things that won't hurt her

and seem to help (lots of outside time, physical activity like swinging and

jumping that requires her to use her sense of balance, focused attention,

sharing books, singing songs together, trying to encourage pretend play and

keeping her on a very restricted but healthy diet, I'm not sure where to start.

I have read the FAQ with interest but I am reluctant to buy supplements willy

nilly without some idea of what would best help her. We'll have her evaluated

by a pediatric neurologist on Thursday but I don't have a lot of faith in

conventional medicine. So far the one resource we were referred to by our family

practice MD told me " It couldn't be autism since it wasn't present from birth. "

And the family practice MD told me that it was probably a phase. I don't know of

any DAN doctors or alternative biomedical treatment options in our area

(Southwest Virginia) but I would be willing to travel if someone has a positive

experience with a practitioner they can recommend.

>

> Anyway, any thoughts from others who have embarked on this journey and have

experience to share would be welcome.

>

> Thanks so much,

> Debby

>

August 25, 2009

Hi Debby -- I'm sorry I had to quickly scan your email I am working but we are

in VA and see Dr. Madren out of VA Beach. Takes insurance which is

wonderful and also has a child on the spectrum. Google his email and send him

an email and he will likely email you back or call you (he called me and I was

flabbergasted). Pleased so far.

Kim

> >

> > I thought I'd introduce myself and say hello! I hope everyone will forgive

the novel to follow:

> >

> > We have a 2.5 yr old daughter who is not yet diagnosed but whom I believe is