Introduction

[Guest guest]

Hi Marie,

I am Helen and I am also a mom to a 4 and 2 yr old. My 4 year old

son is going to be tested for possible Asperger's in the near

future. He was diagnosed with ADHD earlier this year but there is

still something that just doesn't " add up " . He is currently in Head

Start in the mornings and then goes to the public preschool in the

afternoons to try and help him transition with a full day of school

since he will be starting Kindergarten this next fall. I have

struggles with behavior but academically he does very well for his

age.

I understand your concern with the lack of oxygen at birth. When I

had my son I was induced due to the dr. thinking that he was about an

8 pound baby at that time. She was definitely off with her guess on

the weight. After being " stuck " in transition for 6 hours with the

dr. refusing to do a c-section, I delivered my son who weighed 9 lbs

1 oz. He was then diagnosed with pneumonia and bacterial infection

just a couple of hours after being born. I believe that the troubles

that I had delivering may have contributed to his troubles that he

has now also.

I have mentioned constantly to the pediatrician that there was just

something not right but she would always tell me that it was just him

being a boy, and just being that age. What she didn't bother to

listen to me on is that I might know a little something about

disabilities as my sister is autistic. Finally after getting notes

from his teachers I finally got her to accept that there may be more

to it than what she thought.

I am glad that there are others with children that are young that has

this problem also. I am sorry that this post is so long. Welcome to

the group.

Helen

[Guest guest]

Helen,

Your doctor's experience sounds like mine!! I kept asking and

asking about autism or anything but was told he's a boy and he'll

catch up. Or the other thing was " I really don't see it but we'll

keep an eye on it " to never have it really brought up again from

him. After my last straw with that doctor I found a new one and she

really listened to me about my concerns and recommended a

neurologist to see. While I knew more than likely I'd hear an

autism spectrum diagnosis it was still something I felt like I

should have heard it a long time ago. Even from our therapists it

would have been nice for them to say it was something we needed to

look into, especially since I asked them from their professional

point of view if they saw any tendencies. All of them told me no.

But I still felt there was something there.

>

> Hi Marie,

>

> I am Helen and I am also a mom to a 4 and 2 yr old. My 4 year old

> son is going to be tested for possible Asperger's in the near

> future. He was diagnosed with ADHD earlier this year but there is

> still something that just doesn't " add up " . He is currently in

Head

> Start in the mornings and then goes to the public preschool in the

> afternoons to try and help him transition with a full day of

school

> since he will be starting Kindergarten this next fall. I have

> struggles with behavior but academically he does very well for his

> age.

>

> I understand your concern with the lack of oxygen at birth. When

I

> had my son I was induced due to the dr. thinking that he was about

an

> 8 pound baby at that time. She was definitely off with her guess

on

> the weight. After being " stuck " in transition for 6 hours with

the

> dr. refusing to do a c-section, I delivered my son who weighed 9

lbs

> 1 oz. He was then diagnosed with pneumonia and bacterial

infection

> just a couple of hours after being born. I believe that the

troubles

> that I had delivering may have contributed to his troubles that he

> has now also.

>

> I have mentioned constantly to the pediatrician that there was

just

> something not right but she would always tell me that it was just

him

> being a boy, and just being that age. What she didn't bother to

> listen to me on is that I might know a little something about

> disabilities as my sister is autistic. Finally after getting

notes

> from his teachers I finally got her to accept that there may be

more

> to it than what she thought.

>

> I am glad that there are others with children that are young that

has

> this problem also. I am sorry that this post is so long. Welcome

to

> the group.

>

> Helen

>

[Guest guest]

Helen,

Your doctor's experience sounds like mine!! I kept asking and

asking about autism or anything but was told he's a boy and he'll

catch up. Or the other thing was " I really don't see it but we'll

keep an eye on it " to never have it really brought up again from

him. After my last straw with that doctor I found a new one and she

really listened to me about my concerns and recommended a

neurologist to see. While I knew more than likely I'd hear an

autism spectrum diagnosis it was still something I felt like I

should have heard it a long time ago. Even from our therapists it

would have been nice for them to say it was something we needed to

look into, especially since I asked them from their professional

point of view if they saw any tendencies. All of them told me no.

But I still felt there was something there.

>

> Hi Marie,

>

> I am Helen and I am also a mom to a 4 and 2 yr old. My 4 year old

> son is going to be tested for possible Asperger's in the near

> future. He was diagnosed with ADHD earlier this year but there is

> still something that just doesn't " add up " . He is currently in

Head

> Start in the mornings and then goes to the public preschool in the

> afternoons to try and help him transition with a full day of

school

> since he will be starting Kindergarten this next fall. I have

> struggles with behavior but academically he does very well for his

> age.

>

> I understand your concern with the lack of oxygen at birth. When

I

> had my son I was induced due to the dr. thinking that he was about

an

> 8 pound baby at that time. She was definitely off with her guess

on

> the weight. After being " stuck " in transition for 6 hours with

the

> dr. refusing to do a c-section, I delivered my son who weighed 9

lbs

> 1 oz. He was then diagnosed with pneumonia and bacterial

infection

> just a couple of hours after being born. I believe that the

troubles

> that I had delivering may have contributed to his troubles that he

> has now also.

>

> I have mentioned constantly to the pediatrician that there was

just

> something not right but she would always tell me that it was just

him

> being a boy, and just being that age. What she didn't bother to

> listen to me on is that I might know a little something about

> disabilities as my sister is autistic. Finally after getting

notes

> from his teachers I finally got her to accept that there may be

more

> to it than what she thought.

>

> I am glad that there are others with children that are young that

has

> this problem also. I am sorry that this post is so long. Welcome

to

> the group.

>

> Helen

>

[Guest guest]

Helen,

Your doctor's experience sounds like mine!! I kept asking and

asking about autism or anything but was told he's a boy and he'll

catch up. Or the other thing was " I really don't see it but we'll

keep an eye on it " to never have it really brought up again from

him. After my last straw with that doctor I found a new one and she

really listened to me about my concerns and recommended a

neurologist to see. While I knew more than likely I'd hear an

autism spectrum diagnosis it was still something I felt like I

should have heard it a long time ago. Even from our therapists it

would have been nice for them to say it was something we needed to

look into, especially since I asked them from their professional

point of view if they saw any tendencies. All of them told me no.

But I still felt there was something there.

>

> Hi Marie,

>

> I am Helen and I am also a mom to a 4 and 2 yr old. My 4 year old

> son is going to be tested for possible Asperger's in the near

> future. He was diagnosed with ADHD earlier this year but there is

> still something that just doesn't " add up " . He is currently in

Head

> Start in the mornings and then goes to the public preschool in the

> afternoons to try and help him transition with a full day of

school

> since he will be starting Kindergarten this next fall. I have

> struggles with behavior but academically he does very well for his

> age.

>

> I understand your concern with the lack of oxygen at birth. When

I

> had my son I was induced due to the dr. thinking that he was about

an

> 8 pound baby at that time. She was definitely off with her guess

on

> the weight. After being " stuck " in transition for 6 hours with

the

> dr. refusing to do a c-section, I delivered my son who weighed 9

lbs

> 1 oz. He was then diagnosed with pneumonia and bacterial

infection

> just a couple of hours after being born. I believe that the

troubles

> that I had delivering may have contributed to his troubles that he

> has now also.

>

> I have mentioned constantly to the pediatrician that there was

just

> something not right but she would always tell me that it was just

him

> being a boy, and just being that age. What she didn't bother to

> listen to me on is that I might know a little something about

> disabilities as my sister is autistic. Finally after getting

notes

> from his teachers I finally got her to accept that there may be

more

> to it than what she thought.

>

> I am glad that there are others with children that are young that

has

> this problem also. I am sorry that this post is so long. Welcome

to

> the group.

>

> Helen

>

[Guest guest]

Sorry this got sent before I finished typing. Well anyway, I went

to the neurologist she recommended and he was able to finally give

us the diagnosis that we thought he would have. However, when I

asked him should I be doing more than what the school has been

offering for OT and speech services he told me that since he's high-

functioning he doesn't seem to be needing more. I on the other hand

feel that the more I do now will only help him.

So I asked his therapists at school what the thought since they told

me he would get any more minutes even with his diagnosis. The ST

told me that she didn't feel he needed outside services, I'm still

not convinced of this. But his OT told me she thought it would

benefit him, basically she said exactly what I was thinking. This

made me so happy.

So right now I'm going to take him for an OT eval on Tuesday at one

of the local therapy places we have been to when he was in early

intervention.

I don't want to frustrate him but I also want to help get him where

he needs to be and hopefully he'll have better success in school

growing up. He needs some more socialization with kids his age and

this is a struggle for me since I don't have him in any other

activities right now but I think I might change that soon. This is

his biggest area that needs improvement.

So I guess my whole point is that we moms just know when something

is off with our children and doctors really need to start listening

to us more. I'm glad I followed my instincts even though it took so

long to get a diagnosis.

> >

> > Hi Marie,

> >

> > I am Helen and I am also a mom to a 4 and 2 yr old. My 4 year

old

> > son is going to be tested for possible Asperger's in the near

> > future. He was diagnosed with ADHD earlier this year but there

is

> > still something that just doesn't " add up " . He is currently in

> Head

> > Start in the mornings and then goes to the public preschool in

the

> > afternoons to try and help him transition with a full day of

> school

> > since he will be starting Kindergarten this next fall. I have

> > struggles with behavior but academically he does very well for

his

> > age.

> >

> > I understand your concern with the lack of oxygen at birth.

When

> I

> > had my son I was induced due to the dr. thinking that he was

about

> an

> > 8 pound baby at that time. She was definitely off with her

guess

> on

> > the weight. After being " stuck " in transition for 6 hours with

> the

> > dr. refusing to do a c-section, I delivered my son who weighed 9

> lbs

> > 1 oz. He was then diagnosed with pneumonia and bacterial

> infection

> > just a couple of hours after being born. I believe that the

> troubles

> > that I had delivering may have contributed to his troubles that

he

> > has now also.

> >

> > I have mentioned constantly to the pediatrician that there was

> just

> > something not right but she would always tell me that it was

just

> him

> > being a boy, and just being that age. What she didn't bother to

> > listen to me on is that I might know a little something about

> > disabilities as my sister is autistic. Finally after getting

> notes

> > from his teachers I finally got her to accept that there may be

> more

> > to it than what she thought.

> >

> > I am glad that there are others with children that are young

that

> has

> > this problem also. I am sorry that this post is so long.

Welcome

> to

> > the group.

> >

> > Helen

> >

>

[Guest guest]

,

I am working with the school system to try to get him some

assistance. I wonder if he doesn't have some sensory issues as he

has always had trouble with water. When he was a baby, he would

physically shake because of the fear of water and bathtime. Now that

he is older, as long as it is on his terms and he feels that he is in

control, it is okay. However, he wants to go to the pool in the

summer. The only way that I could get him in the pool this summer

was to buy a little inflatable " boat " that he could sit in while in

the pool, and he was able to splash with his hands.

The one thing that calms him is playdough. If you give him a little

playdough, he will sit and work with it for quite some time. His

behavior therapist has some at her office and that is what he is

working with while talking with her.

There are all kinds of little things like this that makes me

think, " Hmm could it be a sensory problem? " I will be so glad when I

know a true diagnosis and also whether the school will help get him

the services that he needs or not.

Helen

[Guest guest]

Helen,

I've been told by several doctors that sensory disorders and Asperger's go hand in hand a lot of the time. My son was diagnosed with the sensory disorder first and his occupational therapist recommended having an Asperger's screen done. He's had so much testing but i finally feel fairly confident with the diagnosis. The signs and symptoms finally scream out...yes...that's him.

Wind

From: heavenlybulldog <heavenlybulldog@...>Subject: ( ) Re: Introduction Date: Tuesday, November 11, 2008, 12:20 AM

,I am working with the school system to try to get him some assistance. I wonder if he doesn't have some sensory issues as he has always had trouble with water. When he was a baby, he would physically shake because of the fear of water and bathtime. Now that he is older, as long as it is on his terms and he feels that he is in control, it is okay. However, he wants to go to the pool in the summer. The only way that I could get him in the pool this summer was to buy a little inflatable "boat" that he could sit in while in the pool, and he was able to splash with his hands.The one thing that calms him is playdough. If you give him a little playdough, he will sit and work with it for quite some time. His behavior therapist has some at her office and that is what he is working with while talking with her.There are all kinds of little things like this that makes me think, "Hmm

could it be a sensory problem?" I will be so glad when I know a true diagnosis and also whether the school will help get him the services that he needs or not.Helen

[Guest guest]

Helen,

My so is also afraid of water. Not the bath though just larger

bodies of water. It takes a lot for him to want to go into a pool,

kiddie or otherwise. At first when he was about 15 months old I

couldn't understand why he was the only little one crying at swim

lessons when we went into the water. He finally got used to it then

it ended. We did another round of lessons not too long after and we

were back at square one. This past summer we could only get him in

the pool if he sat in a pool chair with someone. I also noticed

that he gets colder a lot faster than most kids even when he's fully

in the water. Again, now I know it's a sensory thing for him.

He's not into playdough or other things like that. I even made a

bean-bin for him when he was younger but he never really liked it.

I never stopped from using it but he'll only play with it for a few

minutes. He also doesn't like the snow. Last year was the first

time we actually got him to walk in the snow since we were all our

in it but he would just stand there or follow one of us. Again,

it's a sensory thing for him.

I never got an official diagnosis for sensory problems with him I

just heard the term from several of his therapists when he was in

early intervention. So I had to do a ton of research (since I was

too quiet to say I didn't know what that was when they kept

mentioning it) on sensory processing disorders. It all made sense

and I did see it in him then. But when I brought it up to the

neurologist when we went in for his evaluation he did confirm he did

have sensory issues.

I hope you get your diagnosis soon. It does help even though we

already know in our hearts. Hopefully the school will give him

plenty of services...fight for them if you need to! Since I've been

on the teacher side before I've seen parents fight for things and

get them even if there is some resistance. Good luck!

>

> ,

>

> I am working with the school system to try to get him some

> assistance. I wonder if he doesn't have some sensory issues as he

> has always had trouble with water. When he was a baby, he would

> physically shake because of the fear of water and bathtime. Now

that

> he is older, as long as it is on his terms and he feels that he is

in

> control, it is okay. However, he wants to go to the pool in the

> summer. The only way that I could get him in the pool this summer

> was to buy a little inflatable " boat " that he could sit in while

in

> the pool, and he was able to splash with his hands.

>

> The one thing that calms him is playdough. If you give him a

little

> playdough, he will sit and work with it for quite some time. His

> behavior therapist has some at her office and that is what he is

> working with while talking with her.

>

> There are all kinds of little things like this that makes me

> think, " Hmm could it be a sensory problem? " I will be so glad

when I

> know a true diagnosis and also whether the school will help get

him

> the services that he needs or not.

>

> Helen

>

[Guest guest]

Dear Janice:

This sounds just like my son. When he was little (he will be 15 in december)

everything was sensory. No jeans because of the seams. Everything was the

silky polyester sweat-pants, athletic sily sweat pants. All the tags had to be

cut off his shirts. Now I can't get him out of jeans. Always has to wear glove

when touching dirt or hauling wood (good idea for slivers). He will not touch

mayo, cottage cheese, yogurt. Salad with ranch dressing is the only the kind of

dressing and only green lettuce with out other vegetables in it. Casseroles are

a challenge because it's all mixed together. Hamburger, mad and cheese and

green beans, all SEPARATED ON THE plate. Other good aspects are: " Do you want

vanilla ice cream with chocolate sauce? No mom, can I have steamed broccoli.

Dream come true - LOL LOL LOL. Aleshia ssterland@...

---- rushen janice <jrushen@...> wrote:

> Sensory issues...oh boy does my son have them....clothing especially...nothing

rought, no seams, no tags...underwear and socks are a hugh problem...the seam in

socks bother him...no scratchy shirts...no button downs, no collars.....it can

be overwhelming...and as a baby he hated his hands dirty ...now he we discovered

he likes working with clay and or playdough....he had some in art therapy and

brought it to class...probably calmed him...teacher took it from him as he would

not stop playing with it and she claims he put it in his mouth...which is

another thing..he is 13 but puts everything into his mouth...coins, paperclips,

soda can fliptops...anything and everything...ugh....

>  

> He too hates specks in his food....no seasonings for him ...specks...and he

won't eat it...and no burnt or brown spots...we have to cut them off the

meat....but he is finally trying some new foods...like a few bites of his dad's

fish sandwich and a wendy's hamburger with everything on it...he didn't liek the

mayo....(white and slimy). He won't eat youghrt, cottage cheese,

>

>

> Janice Rushen

>  

> " I will try to be open to all avenues of wisdom and hope "

>

>

>

> From: heavenlybulldog <heavenlybulldog>

> Subject: ( ) Re: Introduction

>

> Date: Tuesday, November 11, 2008, 12:20 AM

>

>

>

>

> ,

>

> I am working with the school system to try to get him some

> assistance. I wonder if he doesn't have some sensory issues as he

> has always had trouble with water. When he was a baby, he would

> physically shake because of the fear of water and bathtime. Now that

> he is older, as long as it is on his terms and he feels that he is in

> control, it is okay. However, he wants to go to the pool in the

> summer. The only way that I could get him in the pool this summer

> was to buy a little inflatable " boat " that he could sit in while in

> the pool, and he was able to splash with his hands.

>

> The one thing that calms him is playdough. If you give him a little

> playdough, he will sit and work with it for quite some time. His

> behavior therapist has some at her office and that is what he is

> working with while talking with her.

>

> There are all kinds of little things like this that makes me

> think, " Hmm could it be a sensory problem? " I will be so glad when I

> know a true diagnosis and also whether the school will help get him

> the services that he needs or not.

>

> Helen

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

so much of this also sound like my son.....Helen, we have the same pool issues.....but I WILL say....that this last summer was the first time...we actually got him into the water with out the boat! LOL I bought him a vest that was really secure and he would finally get into the water with it on..after watching all of his cousins swim all over the pool he decided he could to! and he DID! all by himself...it was amazing!! He continued to swim out into the pool with his vest all summer! My fear though..is that next summer we will have to go through all of his fears all over again!

My son is fearful of everything it seems! We are also cutting out most of his tags.....He doesn't seem to mind the socks...but he hates his SHOES!! and to get all of his clothes on him is horrible! Everything has to be just RIGHT, and the shoes.....can not be to tight or he freaks out! It is realy tiring sometimes.....

He has sensory issues.....something that really needs to improve is him allowing me to wash his hair! does anyone else struggle with this?? I swear.........it is like washing the hair on a CAT! HE HATES IT! I have now taught him how to wash his own hair.....and he does okay, but refuses to wash the soap out! He also can't stand for me to wash his hair..no matter how soft I try to do it!

I can't imagine what all of this feels like to them!

Marie

[Guest guest]

Hey Donna -

You may already know about this but since you didn't mention it, I wasn't sure.

I thought you may want to look into reading about PANDAS - the OCD/handwashing

could be a result of an strong immune response to strep (sometimes ongoing low

grade chronic infection).  And when you have a PANDAS attack, even as it eases

up, you can have cognitive dysfunction that is just like (or maybe just is) ADHD

- when my PANDAS is exacerbated, my brain just flickers.  It's very frustrating,

but cognitive behavioral therapy can be helpful of course - you still treat the

behavioral issues just like you would read.  You just may be able to find

additional medical issues you can address to improve his brain's functioning.

Being aggressive about controlling allergies and any sinus infections, and

having a low allergy diet are things you can do at home to reduce things that

can set off the immune system.  If you have a supportive doctor, you could have

an ASO titer run to test the enzyme levels (like antibody levels) to strep to

see if there is a problem.  More and more pediatricians and other

specialists are becoming aware of PANDAS, and even though the connection to

strep is not proven beyond a doubt, many are willing to consider the

possibility.  Not so many may try to treat it aggressively enough, but if you

found that he did have very high antibodies, then you could decide whether or

not you'd want to travel to someone who will treat it well.

With people w/PANDAS, sometimes you can get strep but not have much in the way

of symptoms like fever or sore throat (maybe because the bacteria doesn't thrive

but can still be a trigger), so a throat culture despite symptoms might be nice

- although they're often negative since it's not just about strep but rather the

immune system's dysfunctional response to it.  And if you ever see a major

increase or return of symptoms that happen suddenly, that's a real good time to

get a strep test even if you don't have physical symptoms.

HTH-

________________________________

From: Donna <damaya@...>

Sent: Tuesday, November 4, 2008 12:42:59 PM

Subject: Introduction

Hi, My name is Donna, I'm 48 and have 2 sons 6 and 3. My 6 year old

was just diagnosed on Thursday with ADHD. He's been having ongoing

behavioral issues at school, and to a lesser extent at home. I've been

trying to get help for him since before kindergarten, when he began

exhibiting OCD symptoms with excessive hand-washing. Everyone kept

telling me that each thing I expressed a concern about was simply a

phase. For me it was too coincidental.

At least finally we know what we're dealing with. He was put on

Strattera, and I've been doing some reading and have changed the way

we're handling some things and are seeing some improvement. I've

ordered a couple of books from Amazon, The Gift of ADHD, and Cory

Stories, so I can learn how to help him develop his strengths, and

also to give him the language to express what he is feeling, and to

know he's not the only child in the world that feels like this.

I'm here for fellowship, and to learn from wiser parents than myself

how to help my son have the kind of life I want for him.

Thanks!

Donna

[Guest guest]

Jeff,

Welocme to the group. I hope you find it informative and helpful.

I am looking forward to your input.

Shirley

--- In , " buckeyes114 " <buckeyes114@...>

wrote:

>

> Hi folks. I'm new to this forum. Diagnosed with RA a few months

back

> as well as Fibromyalgia. Currently on .5cc MTX subcutaneous

> injections, 1MG folic acid, 15MG of Prednisone weekly, 200MG

Celebrex

> and AmbienCR to help with the sleep. Nothing yet for the Fibro.

I'm

> a 60 year old male. First name is Jeff and live in the Columbus OH

> area. Huge Ohio State Buckeyes fan, but please don't hold that

> against me.

> I haven't been without pain since diagnosed but just starting to

see

> some improvement after nearly 2 months on MTX. It's a struggle

though

> keeping a full time job and wrestling with this disease at the same

> time. Hope to get to know you all and take away some useful advice

> from you all.

> Because my schedule is still a bit crazy, not sure how often I'll

be

> able to post here but will do my best to at least check in daily.

> Thanks in advance to all of you.

> God bless.

> Jeff

>

[Guest guest]

Hi Jeff:

Welcome to our wonderful, caring, group. You will be so happy that you

found us, and joined.

It has made a big difference in my life. I have had RA. for almost 6

years now, and the meds. I am taking are working well for me. My flares

are longer apart, and for a shorter time. !!!!

Wishing you pain free days ahead. God Bless you.

Hugs,

Barbara

--- In , " buckeyes114 " <buckeyes114@...>

wrote:

>

> Hi folks. I'm new to this forum. Diagnosed with RA a few months back

> as well as Fibromyalgia. Currently on .5cc MTX subcutaneous

> injections, 1MG folic acid, 15MG of Prednisone weekly, 200MG Celebrex

> and AmbienCR to help with the sleep. Nothing yet for the Fibro. I'm

> a 60 year old male. First name is Jeff and live in the Columbus OH

> area. Huge Ohio State Buckeyes fan, but please don't hold that

> against me.

> I haven't been without pain since diagnosed but just starting to see

> some improvement after nearly 2 months on MTX. It's a struggle though

> keeping a full time job and wrestling with this disease at the same

> time. Hope to get to know you all and take away some useful advice

> from you all.

> Because my schedule is still a bit crazy, not sure how often I'll be

> able to post here but will do my best to at least check in daily.

> Thanks in advance to all of you.

> God bless.

> Jeff

>

[Guest guest]

WELCOME JEFF, MY NAME IS MELYNDA. I'M 39YRS. OLD & HAVE HAD RA FOR FOR OVER 33

YRS. I TAKE SOME OF THE SAME MEDS AS U. I GUESS I'M DOING O.K. I LIVE IN THE

SPARKLING CITY BY THE SEA, CORPUS CHRISTI, TEXAS.

THIS IS AN AWESOME GROUP & I HOPE U CAN FIND SOME PEACE & COMFORT. WE ALL

SUPPORT EACH OTHER HERE.

GOD BLESS, MELYNDA GAMEZ

________________________________

From: buckeyes114 <buckeyes114@...>

Sent: Sunday, November 16, 2008 8:54:58 AM

Subject: [ ] Introduction

Hi folks.  I'm new to this forum.  Diagnosed with RA a few months back

as well as Fibromyalgia.  Currently on .5cc MTX subcutaneous

injections, 1MG folic acid, 15MG of Prednisone weekly, 200MG Celebrex

and AmbienCR to help with the sleep.  Nothing yet for the Fibro.  I'm

a 60 year old male.  First name is Jeff and live in the Columbus OH

area.  Huge Ohio State Buckeyes fan, but please don't hold that

against me.

I haven't been without pain since diagnosed but just starting to see

some improvement after nearly 2 months on MTX.  It's a struggle though

keeping a full time job and wrestling with this disease at the same

time.  Hope to get to know you all and take away some useful advice

from you all.

Because my schedule is still a bit crazy, not sure how often I'll be

able to post here but will do my best to at least check in daily.

Thanks in advance to all of you.

God bless.

Jeff

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

[Guest guest]

Welcome to the group, Jeff. I hope you will find lots of useful

information that will help you as well as sharing your experiences so

that you might help others. Currently I'm on .6ml MTX injections

weekly, 1mg Folic Acid, 1000mg twice daily SSZ and 7.5mg Prednisone -

all for the RA - 10/325mg Percocet for breakthrough pain. For the

Fibro, I take 1200mg Neurontin twice daily. So far, so good - it seems

to be helping. I'm in the process of weaning off the Prednisone, so I

am hoping and praying that the other meds will still be enough once

I'm off of it.

Hope you are able to visit often. Again, welcome.....Doreen

>

> Hi folks. I'm new to this forum. Diagnosed with RA a few months

> back as well as Fibromyalgia. Currently on .5cc MTX subcutaneous

> injections, 1MG folic acid, 15MG of Prednisone weekly, 200MG

> Celebrex and AmbienCR to help with the sleep. Nothing yet for the

> Fibro. I'm a 60 year old male. First name is Jeff and live in the

> Columbus OH area. Huge Ohio State Buckeyes fan, but please don't

> hold that against me.

> I haven't been without pain since diagnosed but just starting to see

> some improvement after nearly 2 months on MTX. It's a struggle

> though keeping a full time job and wrestling with this disease at

> the same time. Hope to get to know you all and take away some

> useful advice from you all.

> Because my schedule is still a bit crazy, not sure how often I'll be

> able to post here but will do my best to at least check in daily.

> Thanks in advance to all of you.

> God bless.

> Jeff

>

[Guest guest]

We have found the Dragon Speak Naturally program for the computer to be helpful.

He can talk to the computer and it will type out what he says. Of course, it

has been good for his grammar, etc as he has to remember to put in proper

punctuation, etc. He doesn't seem to mind editing his own work afterwards -

LOL!

Marilyn in MO

> From: Mayfield <quiltsbylinda@...>

> Subject: ( ) Introduction

>

> Date: Monday, January 19, 2009, 6:28 PM

> Hi my name is and I have a 13 yr.old son with

> Aspergers, he is high functioning and very  smart.  

> Thank goodness. Our school system is trying but not familier

> with AS, so we are learning together.   Over the years we

> have had over 8 diagonis but this is the one that makes

> the  most sense.  

>  

> So my question is this,  my son cannot write well and

> learning to type is hard for him, any suggestions?

> Thanks

[Guest guest]

Hi Carmen,

I am sorry to hear you are suffering. Glad you will get that tumor

taken care of.

Have you been diagnosed with Raynauds? When your toes and heel go

numb have you ever looked at them? Take off shoes and socks? If you

have seen them pale, blue, purple or red it could be that. I get

tingly then numb with it. My doc said raynauds is common with rheumatism.

Also, depending on what phase of a raynauds I am in, sometimes I get

this feeling all over my body similar to what you described, kinda

feels like a rush, makes all my hair stand on end and then I get hot

all with in a few minuts. I think this is part of the raynauds too as

they always happen together.

Be sure to ask your doctor though, you definatetly dont want to wait

to make sure its not something else.

KD

>

> I have been silent and learning a great deal about RA. Thank you to

> all. Now I am in a position that I need a bit of extra help and

> advice. I was hoping that perhaps someone on this list could shed

> light on my situation.

>

> I was diagnosed with RA early in 2008. RA runs in my family. One of

> my sisters and my mother have it. The good news is that my RA is not

> severe but very early at this point. Since my diagnosis I have been

> on Celebrex and for the last 6 weeks Plaquenil. My RA is not yet

> under control. I have problems with my feet and my wrists. Celebrex

> makes a huge difference for me.

>

> This week I was diagnosed with an Acoustic Neuroma (a benign tumour on

> the nerve in your ear). My ENT is referring me to a specialist in

> Neurotology.

>

> This diagnosis explains a few mystery symptoms. I have had a numb

> feeling on the left side of my face and lips. This is due to the

> tumour. I have other odd symptoms but I don't know if they are RA

> related or from the tumour. I was wondering if anyone has any

> thoughts on the following.

>

> My left heel has gone entirely numb. I also have numbness in some

> toes. Is this a symptom of RA - up to now I assumed so.

>

> I am post-menopausal but over the last 6 months I get these heat

> flashes. RA, reaction to my medication?

>

> And lastly, I get this feeling about twice a day for a few minutes

> each time, of the nerves in my body all being 'on edge' (not sure how

> to describe it). RA symptom or a reaction to my meds?

>

> Any help would be greatly appreciated.

>

> Thanks, Carmen

>

[Guest guest]

Hi Carmen

I am also post-menopausal and still have extreme hot flashes. I do know

that especially in the summer sometimes after I take my Neurontin, or right

after my Humera shot I seem to have more hot flashes. I am not sure if its

just hormones , or lack of, that causes it but man they can make ya want to

run around ripping clothes off.

Heidibug

On Sat, Feb 14, 2009 at 10:09 AM, Carmen <cmbenoit@...> wrote:

> I have been silent and learning a great deal about RA. Thank you to

> all. Now I am in a position that I need a bit of extra help and

> advice. I was hoping that perhaps someone on this list could shed

> light on my situation.

>

> I was diagnosed with RA early in 2008. RA runs in my family. One of

> my sisters and my mother have it. The good news is that my RA is not

> severe but very early at this point. Since my diagnosis I have been

> on Celebrex and for the last 6 weeks Plaquenil. My RA is not yet

> under control. I have problems with my feet and my wrists. Celebrex

> makes a huge difference for me.

>

> This week I was diagnosed with an Acoustic Neuroma (a benign tumour on

> the nerve in your ear). My ENT is referring me to a specialist in

> Neurotology.

>

> This diagnosis explains a few mystery symptoms. I have had a numb

> feeling on the left side of my face and lips. This is due to the

> tumour. I have other odd symptoms but I don't know if they are RA

> related or from the tumour. I was wondering if anyone has any

> thoughts on the following.

>

> My left heel has gone entirely numb. I also have numbness in some

> toes. Is this a symptom of RA - up to now I assumed so.

>

> I am post-menopausal but over the last 6 months I get these heat

> flashes. RA, reaction to my medication?

>

> And lastly, I get this feeling about twice a day for a few minutes

> each time, of the nerves in my body all being 'on edge' (not sure how

> to describe it). RA symptom or a reaction to my meds?

>

> Any help would be greatly appreciated.

>

> Thanks, Carmen

>

>

>

[Guest guest]

Hi KD,

I will have to ask my doc about this as well. I am still in a bit of

shock about everything that has happened. It used to be that I was so

healthy...now it seems one thing after another.

Thanks, Carmen

>

> Hi Carmen,

>

> I am sorry to hear you are suffering. Glad you will get that tumor

> taken care of.

>

> Have you been diagnosed with Raynauds? When your toes and heel go

> numb have you ever looked at them? Take off shoes and socks? If you

> have seen them pale, blue, purple or red it could be that. I get

> tingly then numb with it. My doc said raynauds is common with

rheumatism.

>

> Also, depending on what phase of a raynauds I am in, sometimes I get

> this feeling all over my body similar to what you described, kinda

> feels like a rush, makes all my hair stand on end and then I get hot

> all with in a few minuts. I think this is part of the raynauds too as

> they always happen together.

>

> Be sure to ask your doctor though, you definatetly dont want to wait

> to make sure its not something else.

>

> KD

>

>

>

[Guest guest]

Welcome to the group, Barbara.

I hope that with the correct diagnosis and right therapy that you'll

be feeling better very soon.

Not an MD

On Tue, May 5, 2009 at 2:28 AM, Barb <fillyone@...> wrote:

>

>

> I have no Dx yet, just got the RA Factor results today - 150 (I can tell I'm

> a banker, I typed $150.00 first) and have been on a mad search today to find

> all I can on RA.

>

> The rest of the results should be in as the week goes by, I know he did a

> Sed rate but I'm not sure what else he ran. I'm not sure if he really

> expected to see anything on the blood work.

>

> My main complaint for going in is incredible fatigue but as we talked he

> asked if I had any joint pain and yeah, I do - hips and shoulders.

>

> He started me today on 10mg Pred and so tonight it seems that I'm going to

> be one that has the insomnia side effect, stinks to be this tired and unable

> to sleep. Of course this also means that it doesn't look good for going to

> work tomorrow even if everything else it perfectly fine in the morning (one

> can always dream right?)

>

> So anyway, I'm Barb, 48 and live in the Portland Oregon area. I'm single

> with no kids, though I do have a 5 year old German Shepherd who is the apple

> of my eye.

>

> Thank you to all that take the time to post here, I'm going hunting again!

>

> Barb

>

[Guest guest]

Hi Barb,

Just thought I would send you a warm welcome. It is very hard to take

prednisone, you don't get much rest, for sure. I do hope it helps your

pain though.

I look forward to getting to know you. I am 46:( live in OK, and I have

a big kid,(hubby), two daughters,(27,14), and a 3yr old granddaughter.

I also have a dobie, siamese, and two cockateils.

Gentle hugs, Tawny

PS:Hope you get a little rest

>

> I have no Dx yet, just got the RA Factor results today - 150 (I can

tell I'm a banker, I typed $150.00 first) and have been on a mad search

today to find all I can on RA.

>

> The rest of the results should be in as the week goes by, I know he

did a Sed rate but I'm not sure what else he ran. I'm not sure if he

really expected to see anything on the blood work.

>

> My main complaint for going in is incredible fatigue but as we talked

he asked if I had any joint pain and yeah, I do - hips and shoulders.

>

> He started me today on 10mg Pred and so tonight it seems that I'm

going to be one that has the insomnia side effect, stinks to be this

tired and unable to sleep. Of course this also means that it doesn't

look good for going to work tomorrow even if everything else it

perfectly fine in the morning (one can always dream right?)

>

> So anyway, I'm Barb, 48 and live in the Portland Oregon area. I'm

single with no kids, though I do have a 5 year old German Shepherd who

is the apple of my eye.

>

> Thank you to all that take the time to post here, I'm going hunting

again!

>

> Barb

>

[Guest guest]

>

> So she has no door on there. Sending her to her room causes such disruption

for the rest of the family. We can't send her to anyone else room either because

she will tear up their things. But now we have started sending her back to her

room with no door on it and just have to try to put up with the screaming and

hollering about how she doesn't like us and we're mean, etc, etc... Our house is

only 816 sq. ft. so she is basically in whispering distance from any room of the

house. So her yelling is really loud to everyone no matter what room we are in.

But it is better than trying to work it out face to face because that just wears

us out and she is still going strong.

> If it works for you, maybe we will see some improvement if we can live through

the screaming. We just hope the neighbors don't start thinking anything and call

the police!!! LOL

Oh, Andi, this is exactly what we went through LOL. Our house is also a fairly

small house and our son has one of those naturally theatrical voices that really

carries. I think everybody with an Asperger child has a very rough few years at

some point as you work through this stuff. But if you don't do it, I think you

may end up with a 20-something that still has little control. Our son is 14 now

and much better, and I feel like we are in a place where we are trying to pick

up the pieces now and figure out some kind of more normal family life. And

still working on the Asperger son's problems, but they aren't so disruptive

anymore although they still take up a lot of our time. I know our neighbors

think things, but so far nobody has called the police.

[Guest guest]

Welcome, Andi!

One piece of advice - do not let teachers or speech therapists guide your medication decisions. They are not doctors. This is why you pay a doctor good money - to get advice specifically related to your child! We can all give opinions on medication but when it comes down to it, you need to work it out with a qualified doctor to make a good decision. I hope the risperdal is working out! Many times, medication can help calm things down. If it's not, talk to your doctor about dosage or other meds. Puberty is a time when things can go a bit crazy behavior wise. To get specific help on these things, feel free to tell us what kinds of things she is doing. It's hard to make suggestions without know what she is doing and why/when.

Roxanna

"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke

( ) Introduction

Hi, I'm Andi. I live in Oklahoma with my husband and five (soon to be eight) children. I have four boys and one girl. We homeschool our children mainly because of the problems my daughter had in public school.

We do not have a dx of asperger's. I have been doing some research and Hanna seems to fit so well. So much better than anything else I have been told. She was dx with Hypotonic Cerebral Palsey as a baby. That was just a blanket dx and the doctors told me that. At least they did something. The state she was born in told me to just put her in a home and forget about it unless I wanted to be carrying a 27 yr old woman around that was a vegetable. Not really nice. So I moved to a state that had a good Children with Special Needs program. They are the real reason she can walk, talk, and function right now even if they couldn't give me a specific dx.

She is 11 now and her dr. agrees with me that there is a problem with her dx. It just doesn't fit her. They are talking about sending her to a specialist in either Tulsa or OKC. She has a medical dx of Hyperactivity with OCD but the dr. says that isn't the whole problem. I brought up the fact that Hanna has some symptoms of autism, but not all of them. She is very vocal, actually too loud, and I don't think autistic children are like that. But she does remember numbers like crazy, won't look you in the eye about half the time she is talking to you, goes to her room and sits on her bed for hours, has fits that can beat out Mt St. Helena any day, etc... you know what I mean.

So the dr. prescribed risperidone. I only put her on half the dose though because her speech therapist was so against it I didn't know whether I should have her on it or not. Then Hanna went to her grandparents house and ran out so I just took her off when she came back instead of starting her on the second bottle. But last night I was researching her symptoms and Asperger's kept popping up so I started looking at it. Hanna fits it so well I don't know what else it could be. So I started her back on her meds last night and she is getting her full dosage now.

I know I am rambling, but I am at my wit's end. She is really driving me crazy. The fits are awful and she is bigger than me. She is almost bigger than my husband. She is 5'7 and a half and weighs 165lbs. She wears a women's size 14/16. When she has a fit it is a BIG fit! I don't think I can handle it anymore so I looked up asperger's on to find some kind of support. How do you handle this? The defiance, the emotions, the screaming, the silence, the tears, the ups and downs and ups and downs....?

I am glad I found y'all for Hanna's sake and mine.

Thanks for letting me join you,

Andi

[Guest guest]

Hi Miriam -

Welcome to the group! Which Kaiser are you going to? We have Kaiser in

Northern California and our band was partially covered. What you need to

find out is what, if any, Durable Medical Equipment (DME) coverage you have.

The specific Kaiser plan we have covers DME at 80% so we paid for 20% of the

cost of the band. I have other friends with Kaiser insurance and their

plans covered 100% of the cost. The band is considered DME so if you have

DME coverage the band will be covered.

Molly

Novato, California

Nicolas, 3.5, tort & plagio, STARband (CIRS Oakland) 4/24/06-9/12/06,

Graduate!

, 6.5

, 9.5

Introduction

Hi everyone,

I will admit that I have not looked through any of the messages from the

group yet but I just want to come in and do a quick introduction. I just

joined this group after reading a blog regarding DOC bands. I'm taking my 8

months old (today!) daughter to the plastic surgeon tomorrow to have her

head evaluated.

My daughter's head is flat as a board on the back of her head. According to

the pedi there's no asymmetry.

We have Kaiser for our insurance (I pay out of pocket for an individual plan

for her and myself). I've heard that this is most likely not going to be

covered by insurance, but does anyone have any luck?

I hope to learn a lot from all of you!

Miriam

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

For more plagio info

[Guest guest]

Hi Miriam,

My son also has all brachy. We are three weeks into his helmet and have seen

great progress.

We also have Kaiser and we were approved. However, my husband works for Kaiser.

He was able to personally go the desk of the person that was in charge of

approving the helmet and push the issue. I was talkig to my ortho today though

and he said he hardly ever has trouble with Kaiser. The closest Cranial Tech to

us is two states away, so it wasn't an option. They approved a band only from

Hanger.

Good luck and welcome to the group

>

> Hi everyone,

>

> I will admit that I have not looked through any of the messages from the group

yet but I just want to come in and do a quick introduction. I just joined this

group after reading a blog regarding DOC bands. I'm taking my 8 months old

(today!) daughter to the plastic surgeon tomorrow to have her head evaluated.

>

> My daughter's head is flat as a board on the back of her head. According to

the pedi there's no asymmetry.

>

> We have Kaiser for our insurance (I pay out of pocket for an individual plan

for her and myself). I've heard that this is most likely not going to be

covered by insurance, but does anyone have any luck?

>

> I hope to learn a lot from all of you!

>

> Miriam

>