New to Group

[Guest guest]

I too live in NC, in the Raleigh area. My son (who will be 5 next month) was

diagnosed with severe verbal apraxia at about 2 1/2 as well, and did the hand

flap when he became excited as well. We also attend a prek program as well. He

takes 1tsp of the EFA, 1 capsule of the EPA, and 2 capsules of the DHA. We

orginially did the 1tsp of EFA and 2 EPA, but after consulting with our doctors

switched 1 EPA for DHA, as DHA doesn't have to be converted for the brain to use

it. He did well on the EFA/EPA combo, picking up multi-word phrases, and has

done even better with the EFA/EPA/DHA combo in extending the phrases and

increasing spontaneous speech. I would say to tier up the fish oil so that you

know what doseage works for him. The NV has gotten great feedback. I have not

yet tried it, but since it's a food, it wouldn't hurt anything to give it a try.

As far as insurance, we have BCBS. They cover all of his private SLP sessions

under the apraxia code. Have you tried sending the Michigan Insurance

Commission ruling in 2004 concerning BCBS and apraxia to get additional

coverage? You might also want to read up on the IDEA 2004, as insurance

companies like to try to say the speech/OT/PT is the school's responsibility.

There is a specific law firm in VA that specializes in this, and is a great

resource for research. Their name escapes me now, but google it and it should

come up without any problem. Let me know if I can be of any more help!

From: mcmmmingle@...

Date: Tue, 3 Aug 2010 01:18:44 +0000

Subject: [ ] new to group

I just joined the group. I have a 3 1/2 year old boy that was diagnosed with

severe verbal apraxia at 2 1/2.He has has some oral and motor apraxia. He also

has some sensory issues. Jumps alot and rubs his fingers together when something

excits him. He attends a prek program at our elementary school. He r/c speech 3

times a week at school and PT 1 time a week. We have OT private with someone

that specializes in sensory. We started speech private during the summer. He had

just a few words after 1 year of speech thru the infant toddler program with our

state(NC). His therapist for the summer has been wonderful. He has had a surge

in words and is now getting some whole words. Ex: hot,cap,help etc instead of

just beginning sounds.Plus starting to put a few 2 words together;Ex: help me,

go bye etc. We are going to keep her 1 time a week during the school year. I

have several questions:

1) I just purchased the NN Pro EFA fish oil. I started him on 1 gel a day. We

started today. He weighs 42 pounds. Is this enough?

2) I am considering the Nurtriiveda. But because we are making some progress all

of a sudden in speech I wasn't sure if I should start yet.

3) Insurance. We have 30 visits of speech a year with our insurance. With the

apraxia code- Does anyone have any luck getting more visits?? Also for OT and

PT? Thanks,

[Guest guest]

I live in the Raleigh area as well. We live just across the wake county line

into ston county. We have BCBS also but they only manage the plan for my

husbands company. The company sets the quidelines. I am going to call them and

see what happens. I am confused about the fish oils and epa/dha. We bought the

NN pro efa. Should I be giving him something else with it? We just started it

yesterday. It's all a little confusing.

________________________________

From: michelle yates <michelle_yates@...>

Sent: Tue, August 3, 2010 8:19:25 AM

Subject: RE: [ ] new to group

 

I too live in NC, in the Raleigh area. My son (who will be 5 next month) was

diagnosed with severe verbal apraxia at about 2 1/2 as well, and did the hand

flap when he became excited as well. We also attend a prek program as well. He

takes 1tsp of the EFA, 1 capsule of the EPA, and 2 capsules of the DHA. We

orginially did the 1tsp of EFA and 2 EPA, but after consulting with our doctors

switched 1 EPA for DHA, as DHA doesn't have to be converted for the brain to use

it. He did well on the EFA/EPA combo, picking up multi-word phrases, and has

done even better with the EFA/EPA/DHA combo in extending the phrases and

increasing spontaneous speech. I would say to tier up the fish oil so that you

know what doseage works for him. The NV has gotten great feedback. I have not

yet tried it, but since it's a food, it wouldn't hurt anything to give it a try.

As far as insurance, we have BCBS. They cover all of his private SLP sessions

under the apraxia code. Have you tried sending the Michigan Insurance Commission

ruling in 2004 concerning BCBS and apraxia to get additional coverage? You might

also want to read up on the IDEA 2004, as insurance companies like to try to say

the speech/OT/PT is the school's responsibility. There is a specific law firm in

VA that specializes in this, and is a great resource for research. Their name

escapes me now, but google it and it should come up without any problem. Let me

know if I can be of any more help!

From: mcmmmingle@...

Date: Tue, 3 Aug 2010 01:18:44 +0000

Subject: [ ] new to group

I just joined the group. I have a 3 1/2 year old boy that was diagnosed with

severe verbal apraxia at 2 1/2.He has has some oral and motor apraxia. He also

has some sensory issues. Jumps alot and rubs his fingers together when something

excits him. He attends a prek program at our elementary school. He r/c speech 3

times a week at school and PT 1 time a week. We have OT private with someone

that specializes in sensory. We started speech private during the summer. He had

just a few words after 1 year of speech thru the infant toddler program with our

state(NC). His therapist for the summer has been wonderful. He has had a surge

in words and is now getting some whole words. Ex: hot,cap,help etc instead of

just beginning sounds.Plus starting to put a few 2 words together;Ex: help me,

go bye etc. We are going to keep her 1 time a week during the school year. I

have several questions:

1) I just purchased the NN Pro EFA fish oil. I started him on 1 gel a day. We

started today. He weighs 42 pounds. Is this enough?

2) I am considering the Nurtriiveda. But because we are making some progress all

of a sudden in speech I wasn't sure if I should start yet.

3) Insurance. We have 30 visits of speech a year with our insurance. With the

apraxia code- Does anyone have any luck getting more visits?? Also for OT and

PT? Thanks,

[Guest guest]

Hello Beth,Welcome to the group. Don't be nervous. I know it seems scary, but relax, everything will be okay. My personal suggestions: Ask about the qualifications of the orthotist(education, board-certified) and his/her experience treating plagio(how many patients treated?) Also, ask to SEE their work--patient before and after photos. You could also ask for patient references. Whether the person making the band will be doing the adjustments? How long he/she expects baby to wear the band AND how many helmets does he/she think your child will need? Also, at what age does he/she recommend banding for your child(studies show little correction occurs after 5.5 months, but at only four months, you've got plenty of time.) Whether he/she thinks repositioning over the next month could be

effective? If your child has classic plagio, make sure you have him evaluated for torticollis if you haven't already. Tort has to be resolved in order for helmet therapy to work.Good luck and relax!-Amy From: elisabeth_shultz <ewashkow@...>Plagiocephaly Sent: Wed, August 4, 2010 5:56:19 PMSubject: New to Group

Hello everyone. My name is Beth and I just joined. My 4 month old has plagiocephaly and I am taking him in for an evaluation tomorrow. I must admit, I am a bit nervous. This is my first child and I really don't know what to expect. I was hoping that some of you would be able to give me examples of what questions I should ask, what I can expect at the evaluation, etc. Thank you so much.

Regards,

Beth

[Guest guest]

Hi Beth, welcome to the group. My daughter was evaluated by a cranio facial

specialist. He measured her head, and recommended banding, based on his

measurements. The measuring was painless - but I needed to hold her head still

as much as possible. The use calipers, which is just a specialized ruler that

has a hinge that swings open for different size heads. It is also possible to be

evaluated by a band provider, in which case they may use some kind of scanning

device to take an image of the head (our ortho used a starscanner). Again the

only discomfort is that the baby has to hold still, and sometimes they put a cap

on the baby's head to flatten the hair.

I remember being surprised my daughter's headshape was pretty bad. I hadn't

expected that. However, it was good to know and we got a band 2 weeks later.

Over all it was a very positive experience.

Let us know how it goes.

-christine

sydney, 4.5 yrs, starband grad

>

> Hello everyone. My name is Beth and I just joined. My 4 month old has

plagiocephaly and I am taking him in for an evaluation tomorrow. I must admit,

I am a bit nervous. This is my first child and I really don't know what to

expect. I was hoping that some of you would be able to give me examples of what

questions I should ask, what I can expect at the evaluation, etc. Thank you so

much.

>

> Regards,

> Beth

>

[Guest guest]

Welcome-

Hope your appointment goes well. The one thing I wish I would have gotten at my first appoinment and since then have requested was the copy of the paper they send the insurance company to try and get approval. It has the important numbers on it which now gives me reference to compare where we came from to now. People always were talking numbers on here and I never understood but if you ask for those numbers and then have them explain them to you it will be helpful.

Jen

New to Group

Hello everyone. My name is Beth and I just joined. My 4 month old has plagiocephaly and I am taking him in for an evaluation tomorrow. I must admit, I am a bit nervous. This is my first child and I really don't know what to expect. I was hoping that some of you would be able to give me examples of what questions I should ask, what I can expect at the evaluation, etc. Thank you so much.

Regards,

Beth

[Guest guest]

Hi Trudy,

I'd like to take a moment to to welcome you Trudy to this group. Nice to meet

you. I am fairly new and do not talk too much but I am a faithful reader and try

keeping up with all the great info and conversations here! Its a great group!

Hugs & blessings,

Donna W.

________________________________

From: Trudy Marsh Grable <trudy@...>

Sent: Sat, September 4, 2010 3:33:41 PM

Subject: [ ] New to Group

Greetings Everyone,

Funny the progression of joining seems to correlate with

conditions.

I had scleritis nearly 2 years ago. Was on Prednisone for 16 months and after a

grueling period of withdrawal (twice, due to recurrence) I made may way all the

way off. Losing 15 lbs in the process and holding with another 20 to go.

As those of you who have taken longterm pred, the withdrawal is enough to make

you cry from joint pain I had a few weeks of relative joy and energy! No pain!

Now, I am feeling like I am in the middle of withdrawal again. Hands, wrists,

elbows, feet are all screaming at me at the same time. I even have sternum pain

which my doc thinks may be reflux but I think I know better now.

I had the CCP done and it is a weak positive, very low at 22. RF negative. Have

degeneration in my left TMJ and will be having surgery soon to repair that mess.

I am not yet being treated for RA as I only got the labs yesterday and of

course, it is a holiday weekend.

I keyboard 70% of my day and find my wrists are more painful that they used to

be. Does anyone have any tips for me?

This is my first reach out to the group. I am looking forward to getting to know

people and learn from your experiences as I know that all of you are the experts

in this condition.

Trudy

San , CA

[Guest guest]

Hi Trudy.

     Welcome to our wonderful group.  I am sorry for your diagnosis of

RA.  We all know what you are dealing with and are here to help and support

you.  It is a lot to take in for sure.

 

     Please rest when you can.  I don't know what to tell you about your

hands, wrists etc.  I am sure some members here will be able to help you with

tips etc.  RA struck me the worst in my feet and ankles. 

 

     Take care of yourself and again, welcome here.

 

Hugs,

 

Barbara

From: Trudy Marsh Grable <trudy@...>

Subject: [ ] New to Group

Date: Saturday, September 4, 2010, 3:33 PM

 

Greetings Everyone,

Funny the progression of joining seems to correlate with

conditions.

I had scleritis nearly 2 years ago. Was on Prednisone for 16 months and after a

grueling period of withdrawal (twice, due to recurrence) I made may way all the

way off. Losing 15 lbs in the process and holding with another 20 to go.

As those of you who have taken longterm pred, the withdrawal is enough to make

you cry from joint pain I had a few weeks of relative joy and energy! No pain!

Now, I am feeling like I am in the middle of withdrawal again. Hands, wrists,

elbows, feet are all screaming at me at the same time. I even have sternum pain

which my doc thinks may be reflux but I think I know better now.

I had the CCP done and it is a weak positive, very low at 22. RF negative. Have

degeneration in my left TMJ and will be having surgery soon to repair that mess.

I am not yet being treated for RA as I only got the labs yesterday and of

course, it is a holiday weekend.

I keyboard 70% of my day and find my wrists are more painful that they used to

be. Does anyone have any tips for me?

This is my first reach out to the group. I am looking forward to getting to know

people and learn from your experiences as I know that all of you are the experts

in this condition.

Trudy

San , CA

[Guest guest]

Hi Trudy,

I don't spend as much keyboard time as you, but have been considering a voice

recognition program to use instead of a keyboard. I can see the day coming (and

sometimes don't have control of my hands) where I won't be able to comfortably

type.

Does anyone use something like this?

in Grass Valley, CA

[Guest guest]

Since I am new to this and yet to have my doctor state ³you have RA² as the

labs came over the weekend, I probably have no right to be here as yet.

Being proactive, it is important for me to learn from all of you.

Thank you all for the warm greetings.

I have a friend that uses Dragon Dictate due to a neck injury. She is very

productive with it and it works for her. With the technology out there, the

programs keep getting better. There are assistive technology centers across

the US now so you should be able to ³try before you buy². We have such a

center where I work, which will come in handy for me We are in California

too and maybe if you get to SJ you can look at some of those tools. We

mainly work with kids, but adults have also come in to preview items. We

could have an RA day!

I worry about aging specifically. I am 55, single and have 3 daughters, the

youngest with special needs and requires lifetime supports, luckily not

physical supports. I now have her opening jars, water bottles, bringing in

groceries, etc. So I guess it has helped me to help her become more

self-sufficient.

I worry about living alone should I become impacted permanently. Have those

of you out there begun to make provisions for this and if so, how?

Trudy

On 9/5/10 9:58 AM, " ntrojo@... " <ntrojo@...> wrote:

>

> Hi Trudy,

>

> I don't spend as much keyboard time as you, but have been considering a voice

> recognition program to use instead of a keyboard. I can see the day coming

> (and sometimes don't have control of my hands) where I won't be able to

> comfortably type.

>

> Does anyone use something like this?

>

> in Grass Valley, CA

>

[Guest guest]

I have Dragon Naturally Speaking which I used at work consistently before I

retired. I bought it for me computer at home, but I am not using the computer

as much as I did working. It is great, but does take some time for your program

it " get to know you " and your voice. If you are thinking of purchasing it, I

would purchase it and begin using it before you actually need it. The concept

is that the program saves errors that you correct so that it becomes more

accurate over time. For example, if you say " bread " and it spells " bed " and

then you correct it using the voice activation then it stores it. Oh, another

way to improve accuracy is to use the given texts.....or read text from a book

periodically and then make corrections using the voice program. Good

luck.....and if I can help in any way....please don't hesitate to send me an

email. darlene

Darlene Felder

darlene.felder2@...

[ ] Re:New to Group

Hi Trudy,

I don't spend as much keyboard time as you, but have been considering a voice

recognition program to use instead of a keyboard. I can see the day coming (and

sometimes don't have control of my hands) where I won't be able to comfortably

type.

Does anyone use something like this?

in Grass Valley, CA

[Guest guest]

Go to http://download.cnet.com/windows/voice-recognition-software/ and

download the one of your choosing. Dragon has been around for a while but I

havne't used it to know enough to recommend any of them. These will be free

to try, so you'll only lose time, not money.

Dennis in eastexas

On Sun, Sep 5, 2010 at 11:58 AM, <ntrojo@...> wrote:

>

>

> Hi Trudy,

>

> I don't spend as much keyboard time as you, but have been considering a

> voice recognition program to use instead of a keyboard. I can see the day

> coming (and sometimes don't have control of my hands) where I won't be able

> to comfortably type.

>

> Does anyone use something like this?

>

> in Grass Valley, CA

>

>

[Guest guest]

I am purchasine a home that has a split plan.

I hope to barter the other half of the house for basic care....ie opening jars,

changing sheets.

Raniolo

>

> Hi Trudy,

>

> I don't spend as much keyboard time as you, but have been considering a voice

> recognition program to use instead of a keyboard. I can see the day coming

> (and sometimes don't have control of my hands) where I won't be able to

> comfortably type.

>

> Does anyone use something like this?

>

> in Grass Valley, CA

>

[Guest guest]

Hello,

I am new to this group too.

I have Dragon NaturallySpeaking and I like it a lot. It isn't perfect, but it's

very good. I haven't the energy to say everything there is to say on the

subject, but I'll touch on the highlights.

I had Dragon naturally speaking version 10 on my old computer that I ran with

Windows XP. Technically speaking my old computer met the specs for version 10,

but there were issues that told me I needed a more powerful computer if I wanted

to take full advantage of Dragon. You really need a powerful computer. So I

upgraded to a new more powerful PC and it was a good move.

Dragon NaturallySpeaking was recently upgraded to version 11 which I just

purchased and have not yet installed. If you're likely to buy it, the company

that sells Dragon (Nuance) is offering the " preferred " version for $99 instead

of the usual price of $199 until September 30.

I have heard that Windows 7 and Vista also have a very good voice recognition

program and of course it's free. Dragon is supposedly a little better, but you

have to pay for it. I've already invested a lot of energy into learning Dragon

and since using it I have learned that I mumble and that if I'm feeling

emotional when I speak, my voice patterns change. So I really need all the help

I can get.

Dragon comes with a headset that is a combination microphone and headset for

speaking and listening to playback. To me it's very tight and uncomfortable. My

computer has good quality speakers and I bought my own mic. I would probably get

improved recognition if I used the headset that comes with Dragon because it

fits so snugly (which is why I can't stand it). The better the fit to your head

of the microphone, the more consistent your speech will be. You have to train

your voice program to understand your speech. If every time you put on the

microphone headset it is a different distance from your mouth, that's going to

change your speech and make it harder for the voice program to decipher your

speech.

Ellen

>

> Hi Trudy,

>

> I don't spend as much keyboard time as you, but have been considering a voice

recognition program to use instead of a keyboard. I can see the day coming (and

sometimes don't have control of my hands) where I won't be able to comfortably

type.

>

> Does anyone use something like this?

>

> in Grass Valley, CA

>

>

>

[Guest guest]

I hadn't paid attention to it, but there is a voice recognition program in

Windows7. When I get over the after-effects of the Mylogram I had Friday,

I'll look into it further and see if it works for me. I'll get back to y'all

when I know something more.

Dennis in eastexas

On Sun, Sep 5, 2010 at 8:29 PM, Ellen <ellen_knapp@...> wrote:

>

>

> Hello,

> I am new to this group too.

> I have Dragon NaturallySpeaking and I like it a lot. It isn't perfect, but

> it's very good. I haven't the energy to say everything there is to say on

> the subject, but I'll touch on the highlights.

> I had Dragon naturally speaking version 10 on my old computer that I ran

> with Windows XP. Technically speaking my old computer met the specs for

> version 10, but there were issues that told me I needed a more powerful

> computer if I wanted to take full advantage of Dragon. You really need a

> powerful computer. So I upgraded to a new more powerful PC and it was a good

> move.

>

> Dragon NaturallySpeaking was recently upgraded to version 11 which I just

> purchased and have not yet installed. If you're likely to buy it, the

> company that sells Dragon (Nuance) is offering the " preferred " version for

> $99 instead of the usual price of $199 until September 30.

>

> I have heard that Windows 7 and Vista also have a very good voice

> recognition program and of course it's free. Dragon is supposedly a little

> better, but you have to pay for it. I've already invested a lot of energy

> into learning Dragon and since using it I have learned that I mumble and

> that if I'm feeling emotional when I speak, my voice patterns change. So I

> really need all the help I can get.

> Dragon comes with a headset that is a combination microphone and headset

> for speaking and listening to playback. To me it's very tight and

> uncomfortable. My computer has good quality speakers and I bought my own

> mic. I would probably get improved recognition if I used the headset that

> comes with Dragon because it fits so snugly (which is why I can't stand it).

> The better the fit to your head of the microphone, the more consistent your

> speech will be. You have to train your voice program to understand your

> speech. If every time you put on the microphone headset it is a different

> distance from your mouth, that's going to change your speech and make it

> harder for the voice program to decipher your speech.

>

> Ellen

>

>

> >

> > Hi Trudy,

> >

> > I don't spend as much keyboard time as you, but have been considering a

> voice recognition program to use instead of a keyboard. I can see the day

> coming (and sometimes don't have control of my hands) where I won't be able

> to comfortably type.

> >

> > Does anyone use something like this?

> >

> > in Grass Valley, CA

> >

> >

> >

[Guest guest]

The following is a link to the videos on U tube of three of Dr. G's

recovered kids? These kids are not the only ones recovered. There are

hundreds out there. My is among the three kids shown

<http://www.youtube.com/watch?v=iGuSVBVEU3I>

http://www.youtube.com/watch?v=iGuSVBVEU3I

<http://www.youtube.com/watch?v=KLhn1yfFh_g>

http://www.youtube.com/watch?v=KLhn1yfFh_g

< <http://www.youtube.com/watch?v=KLhn1yfFh_g & feature=related>

http://www.youtube.com/watch?v=KLhn1yfFh_g & feature=related>

& feature=related

Email me privately if you want me to forward more info on what we did

medically to help recover.

Marcia

[Guest guest]

Hi Beth, I can relate my feet are especially bad. This is what started the

whole thing for me in 2006 but I was not diagnosed until 2010. Vivian

[ ] New to group

Hi All,

> I just joined the group looking for support. I am 43 and was diagnosed

with RA when I was 21. My RA has been " ok " ,or under control, up until

about a year ago. I have had a rough year with my feet especially.

Beth

------------------------------------

[Guest guest]

Welcome Beth!

 

I hope you will find here what I have found- open ears, open minds, loving and

sharing folks and good, solid medical information.

 

This disease plays heck with my feet too. I think that I am growing nodules on

the joints of my toes- weird & uncomfortable. One step at a time- I refuse to

give up my life. Tell us about you.

 

in SC

 

 

Hi All,

> I just joined the group looking for support. I am 43 and was diagnosed with RA

when I was 21. My RA has been " ok " ,or under control, up until about a year ago.

I have had a rough year with my feet especially.

[Guest guest]

Welcome to the group, Beth. I'm 37 and have just 'come down' with RA this year,

in addition to having Type 1 diabetes. My feet are my worst problem too - the

bones above the arch on the insides. Is that where your feet hurt too?

Soni

>

> Hi All,

> > I just joined the group looking for support. I am 43 and was diagnosed with

RA when I was 21. My RA has been " ok " ,or under control, up until about a year

ago. I have had a rough year with my feet especially.

>

> Beth

>

[Guest guest]

I, too, am new to this group. I just left the Polymyalgia group on

having finally gotten off Prednisone (after 2 years) and felt well for 4

months.

I had a hysterectomy in July and by August I was suffering pain in my

hands, wrists and knees. I am 68, soon to be 69, and aside from the PMR, have

not been ill during all these years. I am seronegative but definitely was

diagnosed with RA.

Does anyone think that surgery could trigger RA? Or that it was

dormant-just lying in wait for the opportune moment to appear?

I am on Plaquenil-2 1/2 months now with no noticeable results. Doc wants

me to give it a 6 month try. Opinions?

I am miserable and disheartened and have been reading all the

posts--especially from the younger folks. This is a really lousy disease and I

am

sorry we are all here. ellen

EL

You don't stop laughing because you grow old,

You grow old because you stop laughing.

[Guest guest]

The Plaquenil works it just takes a while. It took me 7 months for it to

start working and they did have to add other meds with it as well. I know

this disease is a bummer. I have RA and Lupus and most of the biological

meds for the RA flare my Lupus. I can relate to your feeling disheartened I

have been there...I understand! Don't give up hope! Hugs and God bless -

Vivian

[ ] Re: New to group

I, too, am new to this group. I just left the Polymyalgia group on

having finally gotten off Prednisone (after 2 years) and felt well for 4

months.

I had a hysterectomy in July and by August I was suffering pain in my

hands, wrists and knees. I am 68, soon to be 69, and aside from the PMR,

have not been ill during all these years. I am seronegative but definitely

was diagnosed with RA.

Does anyone think that surgery could trigger RA? Or that it was

dormant-just lying in wait for the opportune moment to appear?

I am on Plaquenil-2 1/2 months now with no noticeable results. Doc wants

me to give it a 6 month try. Opinions?

I am miserable and disheartened and have been reading all the

posts--especially from the younger folks. This is a really lousy disease

and I am sorry we are all here. ellen

EL

You don't stop laughing because you grow old,

You grow old because you stop laughing.

[Guest guest]

hi El, i am the same age you are. i'll be 69 on dec. 25th....

i've had OA and RA for several years, but it really got me down a

couple years ago. i didn't go to the dr. until it was too late to do

much good. i encourage the younger ones on the group to get to a dr.

as soon as you can. my younger sis has just found out she has RA ,

...... her dr. started off very agressive with her. hopeing to head off

the crippling that i have. the sooner you can start treatment, the

better your outcome will be....

i have been on plaquenil for almost a year now. it didn't really start

helping me till about 3 months ago. hang in there with it, it will

take time. it has helped with my swelling, in my hands tho, the

swelling in my fingers will never go away... frustrating to try to

things like i used to....

wishing you well,

to all our group, .... have a good day

betty

On 11/4/10, LNWILD@... <LNWILD@...> wrote:

> I, too, am new to this group. I just left the Polymyalgia group on

> having finally gotten off Prednisone (after 2 years) and felt well for 4

> months.

> I had a hysterectomy in July and by August I was suffering pain in my

> hands, wrists and knees. I am 68, soon to be 69, and aside from the PMR,

> have

> not been ill during all these years. I am seronegative but definitely was

> diagnosed with RA.

> Does anyone think that surgery could trigger RA? Or that it was

> dormant-just lying in wait for the opportune moment to appear?

>

> I am on Plaquenil-2 1/2 months now with no noticeable results. Doc wants

> me to give it a 6 month try. Opinions?

>

> I am miserable and disheartened and have been reading all the

> posts--especially from the younger folks. This is a really lousy disease

> and I am

> sorry we are all here. ellen

>

> EL

> You don't stop laughing because you grow old,

> You grow old because you stop laughing.

>

>

>

[Guest guest]

,

Can I send you info about the medical? Kathy runs the Northern New

York Clinic that Dr visits several times a year. It is all in the

info I will forward if you want it.

Marcia

[Guest guest]

Hi, My name is . I joined this group because we just adopted a 2 1/2 year

old daughter who has BPES. I am in the process of looking for a pediatric

opthamologist for her. We live near Houston, TX and I was wondering if anyone

has experience with a physician in Houston that they would recommend. Thank

you!

[Guest guest]

Welcome to the group Tami and yes a lot of this sounds like Asperger's but also some OCD. Many kids with Aspergers also have other overlapping conditions like OCD, depression and anxiety. I would have him formaly tested if you can as soon as possible. Also maybe look into hiring an ABA therapist, most come into the home to help with behavior issues. Has the school tested him? Does he have problems in school?

I hope you get some help soon and I will keep you in my prayers. ne

From: tcavins@... <tcavins@...>Subject: ( ) New to group Date: Monday, February 28, 2011, 12:11 PM

My son is 11 and we have always known that there was something not quite right. The Dr at our last physical said that he had always suspected that maybe had a mild form of Asperger's. I wish he would have expressed that to us years ago. My son does have a lot of difficulty in social situations and he does not like to meet new people very often. We went to see my brother last week and I was so embarrassed because my son was very cold and rude wich has been an ongoing problem. He gets very angry and can be very harsh with his words. When he was little sleeping was a huge problem. At the age of 1 he stopped napping completely and would be up past 10pm and awake at sun up. He refuses to play any type of group sport which really upsets his dad. He would not participate in phys ed until about a year ago. We have him enrolled in a very small private school of only about 10 kids because of his anxiety and easy frustration in social situations

involving many kids. We put him on Daytrana patch in second grade which has helpled a lot in school. Medication of any kind for him is very difficult because he has a phobia of swallowing pills. As he is getting older I am noticing more phobias develop. He will no longer ride in an elevator and he is washing his hands excessively. My husband and I have recently separated and I need help to get control in the home. My son has never been formally tested and when I was talking to someone about where would be the best place for help my son overheard and became very upset. He says he will not go to a counselor or talk to anyone. Has anyone ecxperienced these problems with your kids? Does this sound like Aspergers? I am very frustrated and just don't know where to start. Tami

[Guest guest]

I'll echo what ne wrote. Some of that does sound like OCD is involved. I

have a 22 yr old son with Aspergers and OCD. You can read about OCD and its

treatment at the OCD Foundation website:

http://ocfoundation.org

>

>

> From: tcavins@... <tcavins@...>

> Subject: ( ) New to group

>

> Date: Monday, February 28, 2011, 12:11 PM

>

>

>  

>

>

>

> My son is 11 and we have always known that there was something not quite

right. The Dr at our last physical said that he had always suspected that maybe

had a mild form of Asperger's. I wish he would have expressed that to us

years ago. My son does have a lot of difficulty in social situations and he does

not like to meet new people very often. We went to see my brother last week and

I was so embarrassed because my son was very cold and rude wich has been an

ongoing problem. He gets very angry and can be very harsh with his words. When

he was little sleeping was a huge problem. At the age of 1 he stopped napping

completely and would be up past 10pm and awake at sun up. He refuses to play any

type of group sport which really upsets his dad. He would not participate in

phys ed until about a year ago. We have him enrolled in a very small private

school of only about 10 kids because of his anxiety and easy frustration in

social situations involving

> many kids. We put him on Daytrana patch in second grade which has helpled a

lot in school. Medication of any kind for him is very difficult because he has a

phobia of swallowing pills. As he is getting older I am noticing more phobias

develop. He will no longer ride in an elevator and he is washing his hands

excessively. My husband and I have recently separated and I need help to get

control in the home. My son has never been formally tested and when I was

talking to someone about where would be the best place for help my son overheard

and became very upset. He says he will not go to a counselor or talk to anyone.

Has anyone ecxperienced these problems with your kids? Does this sound like

Aspergers? I am very frustrated and just don't know where to start.

>

> Tami

>