Re: neuropsychological testing

[Guest guest]

We did neuropsych for our Lymie daughter long before we found out she had

Lyme.  I asked if she might have ADHD, and they found all sorts of things but

only reported the symptoms, didn't draw conclusions other than probable ADHD. 

Later, on my own, through my own research, I became concerned that she had an

auditory processing disorder and sensory integration deficit. An audiologist

confirmed, and she did auditory integration therapy (EXTREMELY helpful) and

interactive metronome (very expensive, definitely helpful, but with Lyme

continuing she regressed...)

My point is that we were flying blind and the neuropsych evaluators were only

looking for one thing, their thing, and didn't even mention the others.  That

being said, I did find the interventions we have done for my daughter helpful. 

They have helped her to stay more or less functional while herxing now that she

is finally getting treated.  My inclination would be to do the neuropsych

testing with the LL tester, because it is useful to know the ways in which the

child is being affected by Lyme.  There ARE some interventions, if nothing more

than reading " The Organized Child " and helping your child create and maintain a

system amidst the chaos that Lyme can bring on.

If you already have a handle on how the Lyme is affecting your child, then maybe

there isn't a point.  But before ruling it out, I guess I would ask the LLMD

what the purpose of having the testing done would be and then make a decision

based on his/her answer.

Natasha

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

Subject: [ ] neuropsychological testing

Date: Sunday, January 3, 2010, 4:37 PM

 

Has anyone had neuropsychological testing for your child with LD? Did you

find it helpful?

I have testing tentatively set up for my 6yo son with a lyme literate

psychologist, recommended by our LLMD. I will do anything if it is helpful, but

also reluctant for not wanting to put him through one more thing, it is very

expensive, and not sure what she can tell me as far as recommendations that we

are not already doing. He already gets a variety of therapies and has an IEP

with some accomodations.

Anyone willing to share your experience?

Thanks,

Dara

[Guest guest]

I had my daughter tested and it was helpfull. One problem was that the woman who

did the testing wasn " t really Lyme literate and it turns out she used a lot of

tests that were niot helpful. I spoke with a doc at NYU who heads up a study

there using neuropsychological test and lyme patients. Unfortunately he was very

helpful.

They also did a brain scan on her at NY Pres. Hosp, which showed what parts of

her brain were being effected. Really the most helpful doctor for us where her

brain and mood issues came in was Dr. Bransfield, a Neuropharmacologist out of

NJ. I've mentioned his website here before. It might be worth an e-mail to him,

which is on his website  mentalhealthandillness.com . He also has a

neuropsychiatric lyme assessment form which can be downloaded that perhaps might

be helpfull to the doc you're taking your son to.

It took some time for us to get the correct meds for my daughter, who is 15

now, but the difference is amazing!!! She had symptoms that she didn't even

realize were symptoms because she's always had Lyme and she thought they were

normal. I sat in on the assessment and was blown away.

My daughter's brain symptoms became noticable all at once when she was about 12,

I think it was. She went from being an easy honor roll student, even when she

was homebound due to sickness and a rediculous lack of tutoring from the school,

to struggling to get " c's " over the summer break. It was nuts. There were all

these things I thought were behavioral, like not doing chores or picking up

trash that was right next to her and it turned out they were symptoms of

different kinds of brain function problems. The doctor gave us so much hope.

She's almost back to where she was. 

There was a wonderfully surprising gift that came from her brain going south (as

I call it) which was an insurgence or growth on the artistic side of her brain.

I was so afraid when she had trouble. She had all these plans to go to Ivy

League schools and huge brainiac dreams and I was so afraid her future was now

going to be so limited. But as it often happens in God's world. There was a

purpose. She went from being a kid who couldn't draw a stick figure to doing

beautiful fashion designs. She couldn't stop designing. The art that came out of

her was unreal. The wonderful thing is that now that her intelectual side is

back her artistic side has stayed as well and now she incorperates that into

cooking. This Lyme thing is one hellish ride, but due to being lead to some

amazing doctors I have seen miricles I never could have imagined.

When I took her to our doc in NY they told me after a couple of months that they

were really worried and that I got her there just in time. Her immune system was

almost too compromised for them to be able to do much. I think of that and all

we've been through and where we are today and it feels like a lifetime. What I

always knew was that if I kept fighting for a real answer, because I was getting

so much bull, like, " Some kids are just like that. " I knew if I kept pushing and

asking to be directed we'd find an answer. I believe that is true for all of us.

If you hit what seems like a dead end, turn left. Sooner or later you will be

lead to the right place. I really believe that. Anyway that was a very wordy

answer. I just thought some encouragement might be helpful.

Be well, and don't give up hope.

Annie

________________________________

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

Sent: Sun, January 3, 2010 7:37:12 PM

Subject: [ ] neuropsychological testing

 

Has anyone had neuropsychological testing for your child with LD? Did you find

it helpful?

I have testing tentatively set up for my 6yo son with a lyme literate

psychologist, recommended by our LLMD. I will do anything if it is helpful, but

also reluctant for not wanting to put him through one more thing, it is very

expensive, and not sure what she can tell me as far as recommendations that we

are not already doing. He already gets a variety of therapies and has an IEP

with some accomodations.

Anyone willing to share your experience?

Thanks,

Dara

[Guest guest]

Hello Dara,

As a Lyme-Literate psychotherapist working with children and families impacted

by Lyme, I can't stress enough how important good neuropsych testing can be. 

Not only will you receive necessary info related to how the illness

has affected brain function, but also critical insight into what

accommodations and/or modifications may be of assistance with regard to social,

emotional, behavioral, and/or educational functioning and planning. With regard

to education, it is of utmost importance that children be educated in

accordance with their particular abilities and needs.  IEP qualification and

development should take place in concert with results of the neuropsych

testing. Two leaders in the field are Drs. Leo Shea and Judith Leventhal

located in NY and MA.  Additional info about them may be found at

http://www.n-e-t-s.org/Shea-Leventhal%20Role%20of%20Neuropsych%20Testing%20LD.pd\

f.  Perhaps either doctor may recommend a LL provider in

your area if you are unable to travel to them.  Also, in terms of cost, it

may be of benefit to research whether or not your particular insurance carrier

would reimburse you for their services whole or in part, perhaps as an " out of

network " provider.

All the best to you and your family,

Kim

 

________________________________

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

Sent: Sun, January 3, 2010 7:37:12 PM

Subject: [ ] neuropsychological testing

 

Has anyone had neuropsychological testing for your child with LD? Did you find

it helpful?

I have testing tentatively set up for my 6yo son with a lyme literate

psychologist, recommended by our LLMD. I will do anything if it is helpful, but

also reluctant for not wanting to put him through one more thing, it is very

expensive, and not sure what she can tell me as far as recommendations that we

are not already doing. He already gets a variety of therapies and has an IEP

with some accomodations.

Anyone willing to share your experience?

Thanks,

Dara

[Guest guest]

Hi Annie -- this is incredibly helpful.  Thank you so much for both the link

and for sharing your experience.  My kids are 11 1/2 and almost 13, and both

have congenital Lyme that sort of exploded at around age 7-8 (though many signs

and symptoms existed before then).  They are being treated here in CA and we

have high hopes -- already have seen a big improvement since they started

treatment in July andt hen moved to a super-experienced Lyme doc in October.  I

have printed out the checklist you mentioned.  Sometimes it is frustrating to

see how many symptoms one person has, all laid out in a way that you wonder why

no one saw it before.  I am grateful to be able to go and talk about these

symptoms with my daughter's psychiatrist.  It definitely makes it easier for

her to be on anti-depressants and ADHD meds.  She seems to heal and herx in

different areas, sometimes brain function and impulsitvity and focus, other

times joints.  Her Lyme doc says

that is normal -- the spirochetes have to migrate out of the brain before they

can be eliminated, and where they migrate to is often the joints.

I am interested in the connection between Lyme and the right brain -- I see that

in my girls as well and am glad to know that is not just a temporary symptom!

Thanks again for all the great information

Natasha

 

From: Annie <akannielm@...>

Subject: Re: [ ] neuropsychological testing

Date: Sunday, January 3, 2010, 11:49 PM

 

I had my daughter tested and it was helpfull. One problem was that the

woman who did the testing wasn " t really Lyme literate and it turns out she used

a lot of tests that were niot helpful. I spoke with a doc at NYU who heads up a

study there using neuropsychological test and lyme patients. Unfortunately he

was very helpful.

They also did a brain scan on her at NY Pres. Hosp, which showed what parts of

her brain were being effected. Really the most helpful doctor for us where her

brain and mood issues came in was Dr. Bransfield, a Neuropharmacologist  out of

NJ. I've mentioned his website here before. It might be worth an e-mail to him,

which is on his website  mentalhealthandilln ess.com . He also has a

neuropsychiatric lyme assessment form which can be downloaded that perhaps might

be helpfull to the doc you're taking your son to.

It took some time for us to get the correct meds for my daughter, who is 15

now, but the difference is amazing!!! She had symptoms that she didn't even

realize were symptoms because she's always had Lyme and she thought they were

normal. I sat in on the assessment and was blown away.

My daughter's brain symptoms became noticable all at once when she was about 12,

I think it was. She went from being an easy honor roll student, even when she

was homebound due to sickness and a rediculous lack of tutoring from the school,

to struggling to get " c's " over the summer break. It was nuts. There were all

these things I thought were behavioral, like not doing chores or picking up

trash that was right next to her and it turned out they were symptoms of

different kinds of brain function problems. The doctor gave us so much hope.

She's almost back to where she was. 

There was a wonderfully surprising gift that came from her brain going south (as

I call it) which was an insurgence or growth on the artistic side of her brain.

I was so afraid when she had trouble. She had all these plans to go to Ivy

League schools and huge brainiac dreams and I was so afraid her future was now

going to be so limited. But as it often happens in God's world. There was a

purpose. She went from being a kid who couldn't draw a stick figure to doing

beautiful fashion designs. She couldn't stop designing. The art that came out of

her was unreal. The wonderful thing is that now that her intelectual side is

back her artistic side has stayed as well and now she incorperates that into

cooking. This Lyme thing is one hellish ride, but due to being lead to some

amazing doctors I have seen miricles I never could have imagined.

When I took her to our doc in NY they told me after a couple of months that they

were really worried and that I got her there just in time. Her immune system was

almost too compromised for them to be able to do much. I think of that and all

we've been through and where we are today and it feels like a lifetime. What I

always knew was that if I kept fighting for a real answer, because I was getting

so much bull, like, " Some kids are just like that. " I knew if I kept pushing and

asking to be directed we'd find an answer. I believe that is true for all of us.

If you hit what seems like a dead end, turn left. Sooner or later you will be

lead to the right place. I really believe that. Anyway that was a very wordy

answer. I just thought some encouragement might be helpful.

Be well, and don't give up hope.

Annie

____________ _________ _________ __

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

Sent: Sun, January 3, 2010 7:37:12 PM

Subject: [ ] neuropsychological testing

 

Has anyone had neuropsychological testing for your child with LD? Did you find

it helpful?

I have testing tentatively set up for my 6yo son with a lyme literate

psychologist, recommended by our LLMD. I will do anything if it is helpful, but

also reluctant for not wanting to put him through one more thing, it is very

expensive, and not sure what she can tell me as far as recommendations that we

are not already doing. He already gets a variety of therapies and has an IEP

with some accomodations.

Anyone willing to share your experience?

Thanks,

Dara

[Guest guest]

Thanks Natasha,

Neuropsych testing has been recommended for my son prior to the lyme diagnosis,

but we did not do it, and now I am glad because I think we would be considering

doing it all over again with a lyme literate psychologist.

I have always suspected my son has some auditory processing issues, but have

been told no. I have had his hearing tested several times, because he asks me

to repeat things so much. Now, it all begins to make more sense.

The LLMD says that the testing would be able to identify what of his dev issues

are lyme related and what is not. The psychologist says there are patterns that

show up in testing to identify what is lyme related, but there is no way to know

for sure, of course.

I am sure I will go ahead with the testing. As always, it is just helpful to

hear about other's experiences for validation and support.

Dara

Dara

>

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

> Subject: [ ] neuropsychological testing

>

> Date: Sunday, January 3, 2010, 4:37 PM

>

>

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>

> Has anyone had neuropsychological testing for your child with LD? Did

you find it helpful?

>

> I have testing tentatively set up for my 6yo son with a lyme literate

psychologist, recommended by our LLMD. I will do anything if it is helpful, but

also reluctant for not wanting to put him through one more thing, it is very

expensive, and not sure what she can tell me as far as recommendations that we

are not already doing. He already gets a variety of therapies and has an IEP

with some accomodations.

>

> Anyone willing to share your experience?

>

> Thanks,

>

> Dara

>

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[Guest guest]

Thanks Annie

I did find those articles previously, but have not read all the way through yet.

Good reminder to go back. I am glad your daughter is doing better now, and with

her new skills and talents!

I can see how the testing can be validating and helpful with getting what he

needs at school.

Dara

>

> I had my daughter tested and it was helpfull. One problem was that the woman

who did the testing wasn " t really Lyme literate and it turns out she used a lot

of tests that were niot helpful. I spoke with a doc at NYU who heads up a study

there using neuropsychological test and lyme patients. Unfortunately he was very

helpful.

> They also did a brain scan on her at NY Pres. Hosp, which showed what parts of

her brain were being effected. Really the most helpful doctor for us where her

brain and mood issues came in was Dr. Bransfield, a Neuropharmacologist out of

NJ. I've mentioned his website here before. It might be worth an e-mail to him,

which is on his website  mentalhealthandillness.com . He also has a

neuropsychiatric lyme assessment form which can be downloaded that perhaps might

be helpfull to the doc you're taking your son to.

> It took some time for us to get the correct meds for my daughter, who is 15

now, but the difference is amazing!!! She had symptoms that she didn't even

realize were symptoms because she's always had Lyme and she thought they were

normal. I sat in on the assessment and was blown away.

> My daughter's brain symptoms became noticable all at once when she was about

12, I think it was. She went from being an easy honor roll student, even when

she was homebound due to sickness and a rediculous lack of tutoring from the

school, to struggling to get " c's " over the summer break. It was nuts. There

were all these things I thought were behavioral, like not doing chores or

picking up trash that was right next to her and it turned out they were symptoms

of different kinds of brain function problems. The doctor gave us so much hope.

She's almost back to where she was. 

> There was a wonderfully surprising gift that came from her brain going south

(as I call it) which was an insurgence or growth on the artistic side of her

brain. I was so afraid when she had trouble. She had all these plans to go to

Ivy League schools and huge brainiac dreams and I was so afraid her future was

now going to be so limited. But as it often happens in God's world. There was a

purpose. She went from being a kid who couldn't draw a stick figure to doing

beautiful fashion designs. She couldn't stop designing. The art that came out of

her was unreal. The wonderful thing is that now that her intelectual side is

back her artistic side has stayed as well and now she incorperates that into

cooking. This Lyme thing is one hellish ride, but due to being lead to some

amazing doctors I have seen miricles I never could have imagined.

> When I took her to our doc in NY they told me after a couple of months that

they were really worried and that I got her there just in time. Her immune

system was almost too compromised for them to be able to do much. I think of

that and all we've been through and where we are today and it feels like a

lifetime. What I always knew was that if I kept fighting for a real answer,

because I was getting so much bull, like, " Some kids are just like that. " I knew

if I kept pushing and asking to be directed we'd find an answer. I believe that

is true for all of us. If you hit what seems like a dead end, turn left. Sooner

or later you will be lead to the right place. I really believe that. Anyway that

was a very wordy answer. I just thought some encouragement might be helpful.

> Be well, and don't give up hope.

> Annie

>

>

>

>

> ________________________________

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

>

> Sent: Sun, January 3, 2010 7:37:12 PM

> Subject: [ ] neuropsychological testing

>

>  

> Has anyone had neuropsychological testing for your child with LD? Did you find

it helpful?

> I have testing tentatively set up for my 6yo son with a lyme literate

psychologist, recommended by our LLMD. I will do anything if it is helpful, but

also reluctant for not wanting to put him through one more thing, it is very

expensive, and not sure what she can tell me as far as recommendations that we

are not already doing. He already gets a variety of therapies and has an IEP

with some accomodations.

> Anyone willing to share your experience?

> Thanks,

> Dara

>

>

>

>

>

>

>

>

[Guest guest]

My son had neuropsychological testing done last year when he was 7.They

diagnosed him with ADHD, OCD , Transient Tic Disorder and Developmental Speech

and Motor Dyspraxia. All along he had had Lyme, since age 3-4, but neither us,

nor the doctor knew it at the time.

I'm very curious as to how a doctor could distinguish which symptoms are from

the lyme, or if all of them may be.

Hugs

judy

________________________________

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

Sent: Mon, January 4, 2010 12:13:13 PM

Subject: Re: [ ] neuropsychological testing

 

Thanks Natasha,

Neuropsych testing has been recommended for my son prior to the lyme diagnosis,

but we did not do it, and now I am glad because I think we would be considering

doing it all over again with a lyme literate psychologist.

I have always suspected my son has some auditory processing issues, but have

been told no. I have had his hearing tested several times, because he asks me to

repeat things so much. Now, it all begins to make more sense.

The LLMD says that the testing would be able to identify what of his dev issues

are lyme related and what is not. The psychologist says there are patterns that

show up in testing to identify what is lyme related, but there is no way to know

for sure, of course.

I am sure I will go ahead with the testing. As always, it is just helpful to

hear about other's experiences for validation and support.

Dara

Dara

>

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

> Subject: [ ] neuropsychological testing

>

> Date: Sunday, January 3, 2010, 4:37 PM

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> Has anyone had neuropsychological testing for your child with LD? Did you find

it helpful?

>

> I have testing tentatively set up for my 6yo son with a lyme literate

psychologist, recommended by our LLMD. I will do anything if it is helpful, but

also reluctant for not wanting to put him through one more thing, it is very

expensive, and not sure what she can tell me as far as recommendations that we

are not already doing. He already gets a variety of therapies and has an IEP

with some accomodations.

>

> Anyone willing to share your experience?

>

> Thanks,

>

> Dara

>

>

>

>

>

>

>

>

>

>

>

>

>

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[Guest guest]

Thanks Judy, and wow, that must have been alot to take in.

I really don't understand how the sx can be distinguished from lyme, except the

psychologist said she tends to see certain patterns in patients that have lyme.

Dealing with my son's health and develpmental issues over the past almost-7

years, it has been my experience that every doctor we have seen diagnoses

according to whatever specialty he/she happens to be. His body parts and brain

have been completely compartmentalized. I hope so very much this will be

different!

Dara

> >

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

> > Subject: [ ] neuropsychological testing

> >

> > Date: Sunday, January 3, 2010, 4:37 PM

> >

> >

> >

> >

> >

> >

> >

> >  

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Has anyone had neuropsychological testing for your child with LD? Did you

find it helpful?

> >

> > I have testing tentatively set up for my 6yo son with a lyme literate

psychologist, recommended by our LLMD. I will do anything if it is helpful, but

also reluctant for not wanting to put him through one more thing, it is very

expensive, and not sure what she can tell me as far as recommendations that we

are not already doing. He already gets a variety of therapies and has an IEP

with some accomodations.

> >

> > Anyone willing to share your experience?

> >

> > Thanks,

> >

> > Dara

> >

> >

> >

> >

> >

> >

> >

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[Guest guest]

Hi there --

Bear in mind that a child with auditory processing issues may well have

HYPERACUITY -- in other words, nothing wrong with the hearing per se, just the

way the brain hears the sound the ear is bringing in, if that makes sense.  A

GERAT book that got us to have the testing done was " When the Brain Can't Hear. "

I am sorry to say that experience has taught me NEVER to assume a doctor or even

many doctors are telling me something accurate.  I had to figure out quite

literally EVERYTHING about my daughters, including the Lyme actually.  As an

attorney, I look at things in new ways for creative solutions.  The doctors I

found, including illustrious ones at Stanford, told me what thy had learned but

never thought to look creatively at the problems.  For example, who does a

Western Blot and then goes with " it's negative " instead of considering why a

child has spirochetes in her system at all?  Who says a child must " just " have

adhd when the test results show a child who can do high level functions but not

quick retrieval and short term memory things? 

I have spent the last 4 (at least) years figuring things out for my kids based

on intuition and research about the particular symptoms they showed.  So one

child has sensory integration issues and the other has auditory processing

issues.  I am not saying everyone's child has these things, just that it is

worth reading the literature before accepting a doctor's say-so.  Half the

medical profession didn't even know what I was talking about when I said

auditory processing,  They thought I was talking about hearing which, they

assured me, was fine. 

I am glad for this group.  I learn so much from it every day.

Good luck with your testing -- I trust and hope it will put more pieces of the

puzzle in place.

Onward to a healthier year in 2010!

Natasha

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

Subject: Re: [ ] neuropsychological testing

Date: Monday, January 4, 2010, 9:13 AM

 

Thanks Natasha,

Neuropsych testing has been recommended for my son prior to the lyme diagnosis,

but we did not do it, and now I am glad because I think we would be considering

doing it all over again with a lyme literate psychologist.

I have always suspected my son has some auditory processing issues, but have

been told no. I have had his hearing tested several times, because he asks me

to repeat things so much. Now, it all begins to make more sense.

The LLMD says that the testing would be able to identify what of his dev issues

are lyme related and what is not. The psychologist says there are patterns that

show up in testing to identify what is lyme related, but there is no way to know

for sure, of course.

I am sure I will go ahead with the testing. As always, it is just helpful to

hear about other's experiences for validation and support.

Dara

Dara

>

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

> Subject: [ ] neuropsychological testing

>

> Date: Sunday, January 3, 2010, 4:37 PM

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> Has anyone had neuropsychological testing for your child with LD? Did

you find it helpful?

>

> I have testing tentatively set up for my 6yo son with a lyme literate

psychologist, recommended by our LLMD. I will do anything if it is helpful, but

also reluctant for not wanting to put him through one more thing, it is very

expensive, and not sure what she can tell me as far as recommendations that we

are not already doing. He already gets a variety of therapies and has an IEP

with some accomodations.

>

> Anyone willing to share your experience?

>

> Thanks,

>

> Dara

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thank you Kim. Dr. Leo Shae was the man I spoke with on the phone at NYU. He was

the one who told me the tests the woman I went to weren't correct for Lyme. He

was surprisingly willing to talk with me and give me a lot of information.

Good Luck!

________________________________

From: Kim <kimperrymsw@...>

Sent: Mon, January 4, 2010 9:44:36 AM

Subject: Re: [ ] neuropsychological testing

 

Hello Dara,

As a Lyme-Literate  psychotherapist working with children and families

impacted by Lyme, I can't stress enough how important good neuropsych testing

can be.  Not only will you receive necessary info related to how the illness

has affected brain function, but also critical insight into what

accommodations and/or modifications may be of assistance with regard to social,

emotional, behavioral, and/or educational functioning and planning. With regard

to education, it is of utmost importance that children be educated in

accordance with their particular abilities and needs.  IEP qualification and

development should take place in concert with results of the neuropsych

testing. Two leaders in the field are Drs. Leo Shea and Judith Leventhal

located in NY and MA.  Additional info about them may be found at

http://www.n-e-t-s.org/Shea-Leventhal%20Role%20of%20Neuropsych%20Testing%20LD.pd\

f.  Perhaps either doctor may recommend a LL provider in

your area if you are unable to travel to them.  Also, in terms of cost, it

may be of benefit to research whether or not your particular insurance carrier

would reimburse you for their services whole or in part, perhaps as an " out of

network " provider.

All the best to you and your family,

Kim

 

____________ _________ _________ __

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

Sent: Sun, January 3, 2010 7:37:12 PM

Subject: [ ] neuropsychological testing

 

Has anyone had neuropsychological testing for your child with LD? Did you find

it helpful?

I have testing tentatively set up for my 6yo son with a lyme literate

psychologist, recommended by our LLMD. I will do anything if it is helpful, but

also reluctant for not wanting to put him through one more thing, it is very

expensive, and not sure what she can tell me as far as recommendations that we

are not already doing. He already gets a variety of therapies and has an IEP

with some accomodations.

Anyone willing to share your experience?

Thanks,

Dara

[Guest guest]

Hi Natasha,

I'm so glad your kids are getting better. Sounds like you found a good doc! I

think that makes a huge difference.

I hadn't heard about the spirochetes having to move out of the brain. That's

interesting. Mepron actually helped me a lot with my brain stuff. I couldn't

take it at first because I reacted violently. The docs said I wasn't healed

enough yet so they put me on it later and the difference was unreal. They never

put my daughter on it. She actually did really well with the Cowden Protocol. It

didn't do anything for me. Weird how different things work for different people.

It really is maddening for me how many doctors miss this stuff. In one way I get

it because many of the symptoms mimic other things, but at some point, what do

the spirochetes have to do? Jump out of your body and slap the doc in the head?

My daughters symptoms were more obvious when she went to school. The

kindergarten teacher was amazing! She picked up immediately that my daughter had

processing problems, but no " regular " doctor picked up the Lyme even as her

symptoms mounted to the point of ER visits several times a week.

We have a massive hospital here that rarely accepts that a person has lyme.

They're still using the CDC protocol. Her pediatrician actually told us after

she was diagnosed by our LLMD that there isn't any such thing as the kind of

lyme my daughter was diagnosed with. She was 12 at the time and on a very

difficult medicine and dietary regimin. I thought , " Oh no. How am I going to

get her to keep doing what the LLMD suggests after hearing this? " I asked my

daughter on the way to the car what she thought about what the doctor had just

said.  She said, " Well, I know she's wrong. " I asked how she knew. She said, "

Because I'm so much better. " I sighed, smiled, gave her a hug and silently

thanked God for having such a smart child. Sometimes I wonder how any of us get

help and know there are so many who still suffer. Those of us who are getting

the help we need are blessed. As hard as it is, it could be worse. We could

still be like I was. Frantic for a

solution, knowing my daughter was slipping away and all the doctors I was

looking to for help weren't knowlegeable about Lyme and just kept ordering one

test after another. They never even tested her blooed for alergies. Whichg

turned out that she had substantial alergies. And I was supposed to be going to

the best medical team in the area. UGH.

Anyway, long story again. orry about that.

Annie

________________________________

From: Natasha Moiseyev <nmoiseyev@...>

Sent: Mon, January 4, 2010 9:48:20 AM

Subject: Re: [ ] neuropsychological testing

 

Hi Annie -- this is incredibly helpful.  Thank you so much for both the link

and for sharing your experience.  My kids are 11 1/2 and almost 13, and both

have congenital Lyme that sort of exploded at around age 7-8 (though many signs

and symptoms existed before then).  They are being treated here in CA and we

have high hopes -- already have seen a big improvement since they started

treatment in July andt hen moved to a super-experienced Lyme doc in October.  I

have printed out the checklist you mentioned.  Sometimes it is frustrating to

see how many symptoms one person has, all laid out in a way that you wonder why

no one saw it before.  I am grateful to be able to go and talk about these

symptoms with my daughter's psychiatrist.  It definitely makes it easier for

her to be on anti-depressants and ADHD meds.  She seems to heal and herx in

different areas, sometimes brain function and impulsitvity and focus, other

times joints.  Her Lyme doc says

that is normal -- the spirochetes have to migrate out of the brain before they

can be eliminated, and where they migrate to is often the joints.

I am interested in the connection between Lyme and the right brain -- I see that

in my girls as well and am glad to know that is not just a temporary symptom!

Thanks again for all the great information

Natasha

 

From: Annie <akannielm (DOT) com>

Subject: Re: [ ] neuropsychological testing

Date: Sunday, January 3, 2010, 11:49 PM

 

I had my daughter tested and it was helpfull. One problem was that the woman who

did the testing wasn " t really Lyme literate and it turns out she used a lot of

tests that were niot helpful. I spoke with a doc at NYU who heads up a study

there using neuropsychological test and lyme patients. Unfortunately he was very

helpful.

They also did a brain scan on her at NY Pres. Hosp, which showed what parts of

her brain were being effected. Really the most helpful doctor for us where her

brain and mood issues came in was Dr. Bransfield, a Neuropharmacologist  out of

NJ. I've mentioned his website here before. It might be worth an e-mail to him,

which is on his website  mentalhealthandilln ess.com . He also has a

neuropsychiatric lyme assessment form which can be downloaded that perhaps might

be helpfull to the doc you're taking your son to.

It took some time for us to get the correct meds for my daughter, who is 15

now, but the difference is amazing!!! She had symptoms that she didn't even

realize were symptoms because she's always had Lyme and she thought they were

normal. I sat in on the assessment and was blown away.

My daughter's brain symptoms became noticable all at once when she was about 12,

I think it was. She went from being an easy honor roll student, even when she

was homebound due to sickness and a rediculous lack of tutoring from the school,

to struggling to get " c's " over the summer break. It was nuts. There were all

these things I thought were behavioral, like not doing chores or picking up

trash that was right next to her and it turned out they were symptoms of

different kinds of brain function problems. The doctor gave us so much hope.

She's almost back to where she was. 

There was a wonderfully surprising gift that came from her brain going south (as

I call it) which was an insurgence or growth on the artistic side of her brain.

I was so afraid when she had trouble. She had all these plans to go to Ivy

League schools and huge brainiac dreams and I was so afraid her future was now

going to be so limited. But as it often happens in God's world. There was a

purpose. She went from being a kid who couldn't draw a stick figure to doing

beautiful fashion designs. She couldn't stop designing. The art that came out of

her was unreal. The wonderful thing is that now that her intelectual side is

back her artistic side has stayed as well and now she incorperates that into

cooking. This Lyme thing is one hellish ride, but due to being lead to some

amazing doctors I have seen miricles I never could have imagined.

When I took her to our doc in NY they told me after a couple of months that they

were really worried and that I got her there just in time. Her immune system was

almost too compromised for them to be able to do much. I think of that and all

we've been through and where we are today and it feels like a lifetime. What I

always knew was that if I kept fighting for a real answer, because I was getting

so much bull, like, " Some kids are just like that. " I knew if I kept pushing and

asking to be directed we'd find an answer. I believe that is true for all of us.

If you hit what seems like a dead end, turn left. Sooner or later you will be

lead to the right place. I really believe that. Anyway that was a very wordy

answer. I just thought some encouragement might be helpful.

Be well, and don't give up hope.

Annie

____________ _________ _________ __

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

Sent: Sun, January 3, 2010 7:37:12 PM

Subject: [ ] neuropsychological testing

 

Has anyone had neuropsychological testing for your child with LD? Did you find

it helpful?

I have testing tentatively set up for my 6yo son with a lyme literate

psychologist, recommended by our LLMD. I will do anything if it is helpful, but

also reluctant for not wanting to put him through one more thing, it is very

expensive, and not sure what she can tell me as far as recommendations that we

are not already doing. He already gets a variety of therapies and has an IEP

with some accomodations.

Anyone willing to share your experience?

Thanks,

Dara

[Guest guest]

Natasha,

I hear you loud and clear (no pun intended . I have been having this " fight "

with doctors since my son was 2 weeks old. He seemed to be in pain when moving

his neck. I researched online and found he had all of the symtoms of muscular

torticollis. Took him to several providers, even saying I thought he had

torticollis and was rebuffed. Finally ended up in the ER and when he was

finally diagnosed with, you guessed it, muscular torticollis, I said out loud " I

knew it " . The doctor asked why I did not say anything, " the mother always

knows " . First child, big lesson, one which I had no idea how important it would

continue to be to me every step of the way.

Thanks for your feedback. This board helps me so much too!

Dara

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