Bonnie

September 6, 2005

Bonnie,

Have you thought about going to Hopkins in Baltimore? They, as

well as the Mayo Clinic, are the top hospitals in the country for

rheumatology.

It's always a good idea to get another opinion. A RF of 269 sounds

high but, normal values vary from lab to lab.

I hope you feel better. Elbow pain is the pits.

a

On Sep 6, 2005, at 7:44 AM, bhudick wrote:

> Thanks - I've tried the rice socks, ice, cortisone shots, massage,

> PT and it keeps coming back - it's so bad today (thank goodness I'm

> going to my doctor tonight) that I put on an elbow brace to wear

> here to work - to help - I'm on sulfasalazine, plaquinel, predisone,

> humira weekly - and it still isn't working.

>

> When I was diagnosed - my RF factor was 269 - is that high? Someone

> suggested that I go to Boston for another opinion - because I'm

> falling apart very fast - lost most of the mobility in my left arm -

> and the flares are so bad now - I live in Connecticut - does anyone

> else live near by?

>

> Bonnie

September 8, 2005

Thanks a - no haven't thought of going there yet - just switched

to Enbrel from Humira - will try first - but probably should think

what to do down theline. Was given 2-3 injections of cortisone into

the joint and one of prednisone into the arm - and doing better -

butI know it's just temporary.

Thanks for listening!

Bonnie

>

> > Thanks - I've tried the rice socks, ice, cortisone shots,

massage,

> > PT and it keeps coming back - it's so bad today (thank goodness

I'm

> > going to my doctor tonight) that I put on an elbow brace to wear

> > here to work - to help - I'm on sulfasalazine, plaquinel,

predisone,

> > humira weekly - and it still isn't working.

> >

> > When I was diagnosed - my RF factor was 269 - is that high?

Someone

> > suggested that I go to Boston for another opinion - because I'm

> > falling apart very fast - lost most of the mobility in my left

arm -

> > and the flares are so bad now - I live in Connecticut - does

anyone

> > else live near by?

> >

> > Bonnie

>

September 8, 2005

Thanks a - no haven't thought of going there yet - just switched

to Enbrel from Humira - will try first - but probably should think

what to do down theline. Was given 2-3 injections of cortisone into

the joint and one of prednisone into the arm - and doing better -

butI know it's just temporary.

Thanks for listening!

Bonnie

>

> > Thanks - I've tried the rice socks, ice, cortisone shots,

massage,

> > PT and it keeps coming back - it's so bad today (thank goodness

I'm

> > going to my doctor tonight) that I put on an elbow brace to wear

> > here to work - to help - I'm on sulfasalazine, plaquinel,

predisone,

> > humira weekly - and it still isn't working.

> >

> > When I was diagnosed - my RF factor was 269 - is that high?

Someone

> > suggested that I go to Boston for another opinion - because I'm

> > falling apart very fast - lost most of the mobility in my left

arm -

> > and the flares are so bad now - I live in Connecticut - does

anyone

> > else live near by?

> >

> > Bonnie

>

May 29, 2006

Hi Bonnie:

You are on exactly what I am on as far as the Mtx and

Enbrel, except that I have Enbrel twice a week. Do

you take 50 mg. once, is that why only one shot per

week? Mine are 25 mg. each. I also just had my Mtx

increased to 5 tabs as my RA was acting up. The

Enbrel has helped me, and I hope that these recent ups

and downs with flares does not mean that my RA is

getting worse.

I live between Lake Elsinore and Temecula - or on a

larger scale - between Corona and Escondido. I grew

up in Rancho Palos Verdes which is pretty close to

Redondo Beach. I do miss the beach sometimes - love

the noise of the waves and the smell of the ocean.

I think we are pretty much the same distance from

Indio as we are from Redondo Beach - about an hour and

a half - maybe a bit closer to Indio.

I love living out here in this more rural area. We

are trying to become a city where I live, and keep it

more rural. Right now we are under county of

Riverside as far as new developments, and there are

far too many tract homes here now! We have 2 acres

which is a small farm, but we are where we will not

have anybody right next door, or building tract homes

behind us, and I really am glad of that.

Take care - and hope that this weekend has been a good

one for you with less pain -

Kathe in CA

__________________________________________________

August 19, 2006

Hi Cam,

Welcome back from vacation. Have fun?

I didn't just decide in 12 days to get a second opinion. I had been thinking about it for months and months, almost a year. I am at my wits end. My appointment with Dr. Bridwell is Sept 1st. We fly to St Louis the day before and come home late on Sept 2. Interestingly, I did not need a referral. I just gave a little of my history, current symptoms and told them I had had H-Rod surgery with Dr. Keim and flatback revision surgery with Dr. Boachie. I figured that might spark their interest in seeing me.

Bonnie

[ ] Bonnie

Bonnie,I was surprised to hear that in just 12 days you decided to get another opinion....but if my experience with a good second opinion was any guide...it really helps to have that second set of eyes looking at your problem. How can you loose? Either DrBridwell also recommends the same course of action you are on....or he thinks their might be more to be done.When is your appointment?Take Care, Cam

January 4, 2007

Bonnie,

I think that kids with NLD Can have apraxia. They are quite adept

at " language and perhaps vocabulary " while not necessarily the

verbal aspects. I have a friend who speaks all over the country on

the topic of NLD and I am asking her some questions for you. I hope

you don't mind.

It is very important to have diagnosis in hand when it comes time to

enter college. The Regents board requires diagnosis and specific

learning disabilities be supplied and it must be showed that

accomodations for those issues are needed in order to successfully

complete high school. Your son may very well want to go to college

when he is older and now is the time to start lining up the ground

work.

You said he has had psychological work ups and neurological

workups. Has he had an actual neuro-psychological evaluation where

they give percentiles, etc., for fluency, decoding, processing,

memory in all of the many categories as well as learning styles,

etc.,? I'm sure you know what I mean.

Many kids are not easily testable. My son does horribly on tests

and if you were to judge him only on what tests reveal about him it

would be quite depressing. The list of my sons issues would be a

very long paragraph. Sometimes I will look over an old neuropsych

eval and say, " Oh yeah! I forgot he has That issue Too! "

He also is extremely social and this is his salvation.

Kurzweil is widely acclaimed as the best text to speech software.

It certainly has the broadest range of voices, but we recently

changed my son to the Claro Read. It has fewer voices but my son

loves the freedom it gives him. It also has word processing

capabilities, gets to know the person's " style " and presents

word/phrase possibilities to click on as well as automatic editing

capabilities.

The College Board does allow (where students have shown the need to

use them in school setting) the use of text to speech and other

processing programs for SAT's, AP exams, etc., and the Regents Board

allows them for College entrance exams, etc., Untimed tests is

allowable as well. Every support he uses now, can be available in

college. I know attorneys who can barely walk 10 steps without

resting and need a walker to lay they briefcase on and have barely

intelligible speech who have obviously completed college and law

school. Kids like ours need to have a hope for the future and

menial labor is not likely to serve them well.

I can get you information on these issues if you like.

I am sure you know that all these types of purchases can be deducted

as medical (other) on your taxes when the child has been diagnosed

with learning disorders. I recommended some of these things to a

lady here who runs a private school and she was very excited to use

them for her son and students. I have sent an email to see how

things are going for the students. I was quite surprised they

weren't already utilizing these things. Don't you find that

the " special needs world " functions like a thousand tiny islands.

There is not enough information sharing going on.

We need to rush off to OT and Speech therapies. I have much more I

would like to comment on and add but maybe you can respond to this

much anyway.

I feel so clearly what you are going through and I hate to imagine

the digging and searching and sleepless nights you must encounter.

That is exactly how I began compiling my heap of information.

Take care, more later,

Brigett

> >

> > Bonnie,

> >

> > I have some ideas for you. My son is 19 (1 of 4 kids) and has

quite

> significant issues as well. He is in college and is successful.

There

> was a time I wondered if he would ever be able to even hold a job

in a

> fast food establishment. His future was a real worry.

> >

> > I have a lot of questions for you. I am an educational

advocate and

> my personal interest is in kids your son's age because time is

running

> out for them. It sounds like you have done an awful lot for him

> already.

> > I wonder who did his testing?

> > Was he ever seen by a neurologist or a had a neuropsych eval?

> > You say his memory is very good, but have you had it evaluated

to

> see if it is short term, long term, or limited to a certain number

of

> things?

> > Has he been evaluated for executive function disorder?

> > I see that you did " " for dyslexia, have you ever looked

into

> mood Bell?

> > Have you done processing remediation?

> > Has he seen an OT for dysgraphia?

> > Has he been diagnosed or evaluated for dyspraxia?

> > Fast Forward - Ear robics, etc.,

> > Modulated music listening therapies?

> > Does he have hypotomia?

> > Have you had him evaluated intensively for neuro-transmitter

> disorders?

> > How is he at Math?

> > Does he use a text to speech or speech to text software?

> > Is he in regular ed classes?

> > Do you know his full scale IQ, verbal IQ and performance IQ's?

> > Do you know anything about NLD?

> > You say that he knows what he thinks and wants to say and

> write....can he then " get it down on paper " ?

> > Does he want to go to college?

> > Have you had him looked at for mitochondrial disorders?

> >

> > As you can see this may be indepth for the message board but I

would

> be glad to talk with you offlist, or on the phone and exchange

ideas.

> Perhaps I can give you some new directions to try.

> >

> > I feel for you.

> > Feel free to contact me offlist.

> >

> > Brigett

>

January 4, 2007

Hi Brigett -

Thanks so much for your comments. I don't mind if you refer to in

your inquiries. I cannot imagine him in college - unless it was

a " special " college. He continues to learn, but I assume that we have

apretty good picture of his academic skills. He has had adamemic testing

as you mentioned, but the results always come with a disclaimer from the

tester indicating that it does not acurately represent 's abilities.

One even came back as having an IQ of 30! That was the worst. I think

his visual processing/tracking issues interfere with the testing, and

his anxiety level goes through the roof. He has had 3 eye surgeries for

muscle imbalance, and still has severe problems with tracking.

One of the things suggested as a reason for his poor performance, was

that when the amygdala is triggered by anxiety, it sends " signals " to

the prefrontal cortex, which interferes with higher level thinking

skills. With the method, the " antidote " is to stop, relax and get

the brain to resume normal functioning through visualization. An example

given to me was to think about a time I felt confused and thus anxious

about where I was, while driving on a familar street. Then, a familar

landmark triggers the brain to re-orient itself.

I'm not sure why is so vehemently opposed tousing the Kurzweil

program. We've tried this, but he does not like thecomputer voice. I'll

look into the one you mentioned. We realize he will have to use one of

them in the long term. Interestingly, when reads out loud, and

gets stuck on a word, if he, or someone else, spells the word, he can

say it. He also substitutes same meaning words. This seems to indicate

that he has a better ability to decode text using auditory skills over

visual. And he has a great vocabulary. Aphasia probably prevents him

from being able to say a particular word at a moment, but he can recall

and say a different one with the exact same same meaning. Through all of

this reading strangeness, his comprehension is very good. So. as you can

see, helping him requires a lot of one-on-one, and he loves that, but we

want him to be more independent. That's the big problem.

Bonnie

>

> Bonnie,

>

> I think that kids with NLD Can have apraxia. They are quite adept

> at " language and perhaps vocabulary " while not necessarily the

> verbal aspects. I have a friend who speaks all over the country on

> the topic of NLD and I am asking her some questions for you. I hope

> you don't mind.

> It is very important to have diagnosis in hand when it comes time to

> enter college. The Regents board requires diagnosis and specific

> learning disabilities be supplied and it must be showed that

> accomodations for those issues are needed in order to successfully

> complete high school. Your son may very well want to go to college

> when he is older and now is the time to start lining up the ground

> work.

> You said he has had psychological work ups and neurological

> workups. Has he had an actual neuro-psychological evaluation where

> they give percentiles, etc., for fluency, decoding, processing,

> memory in all of the many categories as well as learning styles,

> etc.,? I'm sure you know what I mean.

> Many kids are not easily testable. My son does horribly on tests

> and if you were to judge him only on what tests reveal about him it

> would be quite depressing. The list of my sons issues would be a

> very long paragraph. Sometimes I will look over an old neuropsych

> eval and say, " Oh yeah! I forgot he has That issue Too! "

> He also is extremely social and this is his salvation.

>

> Kurzweil is widely acclaimed as the best text to speech software.

> It certainly has the broadest range of voices, but we recently

> changed my son to the Claro Read. It has fewer voices but my son

> loves the freedom it gives him. It also has word processing

> capabilities, gets to know the person's " style " and presents

> word/phrase possibilities to click on as well as automatic editing

> capabilities.

>

> The College Board does allow (where students have shown the need to

> use them in school setting) the use of text to speech and other

> processing programs for SAT's, AP exams, etc., and the Regents Board

> allows them for College entrance exams, etc., Untimed tests is

> allowable as well. Every support he uses now, can be available in

> college. I know attorneys who can barely walk 10 steps without

> resting and need a walker to lay they briefcase on and have barely

> intelligible speech who have obviously completed college and law

> school. Kids like ours need to have a hope for the future and

> menial labor is not likely to serve them well.

>

> I can get you information on these issues if you like.

> I am sure you know that all these types of purchases can be deducted

> as medical (other) on your taxes when the child has been diagnosed

> with learning disorders. I recommended some of these things to a

> lady here who runs a private school and she was very excited to use

> them for her son and students. I have sent an email to see how

> things are going for the students. I was quite surprised they

> weren't already utilizing these things. Don't you find that

> the " special needs world " functions like a thousand tiny islands.

> There is not enough information sharing going on.

>

> We need to rush off to OT and Speech therapies. I have much more I

> would like to comment on and add but maybe you can respond to this

> much anyway.

>

> I feel so clearly what you are going through and I hate to imagine

> the digging and searching and sleepless nights you must encounter.

> That is exactly how I began compiling my heap of information.

>

> Take care, more later,

> Brigett

January 4, 2007