New to Group

[Guest guest]

Tara,

I am new to the group, but not new to the problem

you're having! My son, , is 7 months old now,

and just starting wearing a Starband. We began

noticing the flatness around 8 weeks. We tried

repositioning with towels, wedges, repositional

therapy, pretty much everything out there. He would

just roll off or away from whatever we used. Our

pediatrician recommended securing the roll to him with

velcro, but I didn't like the sound of that. Good

luck!

Mother of , Starband wearer since 11/14/05

--- Tara Katz <tarabrian88@...> wrote:

> Hi there,

>

> My son is 9 weeks old. One side of the back of

> his head is a bit

> flat and I was wondering what would be the best

> device to use in his

> crib. I have tried placing a towel under his

> shoulder, but he slides

> right off. He is already between two rolls, tightly

> swaddled...but he

> moves around alot anyway.

>

> any advice is much appreciated.

>

> thanks,

> tara

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Lori, welcome to the group. This is a wonderful place to come to get

information and support. It sounds as if you have a very good

rheumatologist. Some doctors don't do much if the blood tests come back

negative, but many people have seronegative RA. Also, the thinking

these days is to treat RA very aggressively from the beginning to

prevent joint damage from occurring. Methotrexate is the NSAID (Non

Steroid Anti-Rheumatic Drug) that many rheumys start off with. There

are many medications available these days that can, in many instances,

stop the RA in its tracks. Good luck, and that rheumy is definitely a

keeper! Sue

On Tuesday, November 22, 2005, at 06:22 PM, loriginsberg@...

wrote:

>

> My name is Lori and I live in southern California. I have been

> experiencing many symptoms of RA over the past several months so my

> doctor referred me to a rheumatologist who I saw yesterday. So far, my

> blood tests are coming back negative and I don't have any obivious

> signs

> of swelling. My hands and feet hurt alot and I have morning

> stiffness. I

> have had tendonitis in my left wrist 3 times in the last 4 months. I

> have

> also noticed that lately, my eyes have been very dry. My

> rheumatologist

> feels that I may be in the beginning stages of RA and has put me on

> 10mg

> of prednisone once a day for two weeks. I have an appointment to see

> him

> again at that time. He says if my symptoms dissappear or improve over

> the next two weeks as a result of the prednisone that would be an

> indicator to him that I may very well have RA. From our conversation

> yesterday he seems to be of the opinion that an aggressive course of

> action would be his choice in treating this. I'm not sure exactly what

> that entails, but he did mention putting me on a drug that I would take

> for the rest of my life (I'm 52). I am writing today to get other's

> opinions as I am new to all this and frankly very confused and scared.

> Any suggestions, questions I should ask, etc. would be greatly

> appreciated.

[Guest guest]

Dear Sue, Lynn and Maureen,

Thank you for the warm welcome and words of encouragement. So far I

don't have any change since I started taking the predisone, granted I've

only taken two doses. I am not sure what to hope for. I don't want the

medicine to work because the doctor said that would be an indicator that

I might have RA, but at the same time I want to know what I have. I also

don't want to be treated for something that I don't have either. Time

will tell..........anyway I have decided to ignore it all for now and

just get ready for a wonderful Thanksgiving. Happy Holidays to all.

Lori in So. California

On Tue, 22 Nov 2005 20:53:43 -0500 Sue <marysue@...>

writes:

Lori, welcome to the group. This is a wonderful place to come to get

information and support. It sounds as if you have a very good

rheumatologist. Some doctors don't do much if the blood tests come back

negative, but many people have seronegative RA. Also, the thinking

these days is to treat RA very aggressively from the beginning to

prevent joint damage from occurring. Methotrexate is the NSAID (Non

Steroid Anti-Rheumatic Drug) that many rheumys start off with. There

are many medications available these days that can, in many instances,

stop the RA in its tracks. Good luck, and that rheumy is definitely a

keeper! Sue

On Tuesday, November 22, 2005, at 06:22 PM, loriginsberg@...

wrote:

>

> My name is Lori and I live in southern California. I have been

> experiencing many symptoms of RA over the past several months so my

> doctor referred me to a rheumatologist who I saw yesterday. So far, my

> blood tests are coming back negative and I don't have any obivious

> signs

> of swelling. My hands and feet hurt alot and I have morning

> stiffness. I

> have had tendonitis in my left wrist 3 times in the last 4 months. I

> have

> also noticed that lately, my eyes have been very dry. My

> rheumatologist

> feels that I may be in the beginning stages of RA and has put me on

> 10mg

> of prednisone once a day for two weeks. I have an appointment to see

> him

> again at that time. He says if my symptoms dissappear or improve over

> the next two weeks as a result of the prednisone that would be an

> indicator to him that I may very well have RA. From our conversation

> yesterday he seems to be of the opinion that an aggressive course of

> action would be his choice in treating this. I'm not sure exactly what

> that entails, but he did mention putting me on a drug that I would take

> for the rest of my life (I'm 52). I am writing today to get other's

> opinions as I am new to all this and frankly very confused and scared.

> Any suggestions, questions I should ask, etc. would be greatly

> appreciated.

[Guest guest]

Hi !

The DOC Band shouldn't have any ill effects on PT. Both of banded

babies actually did better with rolling in their bands. Since the

band is round they didn't have to work against the flat spot to roll.

We've been working on DD's low tone (never went to neuro though). No

problems with the band. She is doing great. Actually she's

surpassing our older two kids now! They band is super light so it

shouldn't cause any trouble. The hat I have for her weighs more than

the band!

I'm sorry the ped gave you such bad advice with your 3 year old.

You'll hear a lot of that around here. Luckily you listened to your

gut this time around.

Good luck at your appointment!

Mom to Dane 4 yo (DOC Grad) and Cece almost 11 mo! (DOC)

P.S. My Olivia is 6 yo. She is the only one who whose head stayed

round!

[Guest guest]

Hi !

The DOC Band shouldn't have any ill effects on PT. Both of banded

babies actually did better with rolling in their bands. Since the

band is round they didn't have to work against the flat spot to roll.

We've been working on DD's low tone (never went to neuro though). No

problems with the band. She is doing great. Actually she's

surpassing our older two kids now! They band is super light so it

shouldn't cause any trouble. The hat I have for her weighs more than

the band!

I'm sorry the ped gave you such bad advice with your 3 year old.

You'll hear a lot of that around here. Luckily you listened to your

gut this time around.

Good luck at your appointment!

Mom to Dane 4 yo (DOC Grad) and Cece almost 11 mo! (DOC)

P.S. My Olivia is 6 yo. She is the only one who whose head stayed

round!

[Guest guest]

Hi , My 8 mo. old was diagnosed w/ brachy also and he has been in a band since 11-18-05. My peditrician said his flatness would round out at 2 mos. and at 6 mos. I made and appt. w/ the peditrician just for the referreals I needed for a helmet. She too said "it would round out and a helmet would make him look retarded". I knew from experience from my older daughter that it would not round out. My daughter didn't have any issues w/ plagio, but she was born w/ low muscle tone. The drs. at birth described her as being floppy. She met all her developmental milestones really late, and didn't start to walk until 18 mos. She had all over low muscle tone, but that's it. She was tested for muscular distrophy and cerebal palsey by a nerologist, and she didn't have it. At 18 mos. old the peditrician finally agreed to put her in physical and occupational therapy ( I had been wanting this

since she was 6 mos. and not rolling yet, but the dr. said not to worry. Therefore I felt that she missed a years worth of therapy) The neurologist said to put her in gymnastics for building muscle strength. She really loved the gymnastics, and didn't know that she was building her strength up at the same time. I put her in a mom and tot class at 15 mos. She is now 7 yrs. old and has come a long way. I don't really see the low tone anymore, and she thinks that she id the stongest person around and that's all that matters anyway. I did not want to take the advice from my peditrician in telling me my son's head would round out. I didn't want to make the same mistake with my son that I did w/ my daughter because the dr. made me feel like I was stupid for wanting therapy for her at 6 mos. The therapy worked good for her too. Ever since my son was banded he can roll all around now, because he is

rolling on a round object (his band) and not his head which is flat in the back. The band shouldn't interfere w/ sitting and tummy time. It only weighs 6-10 oz. For the low tone, your dr. may want to rule out cerebal palsey and other things. Check w/ you city or or local gymnastic centers to see if they have a mom and tot class. It is really fun for you and your child and it will help her with balance, coordination and strength. They have things for her to crawl in, bounce on, and jump into when she gets older. I hope this helps. It defentaly helped my daughter. Janie and (8 mos. severe brachy and tort banded on 11-18-05).Chad Damon <chadwick1000@...> wrote: Hi, my name is and I have a 6mo dd Olivia who was just evaluated by ct for doc band for brachy. Currently

we are awaiting auth to continue. Thankfully my ped referred me so she said she would write the letter of med nec.Feeling a little guilty about my 3yo with plagio who never got this opportunity. Our old ped kept telling me not to worry. She made me feel like I was being unreasonable about asking. Now it is too late and my new ped said she would have definitely referred him. Anyway, my 6mo is also being referred to a neuro for low tone to be evaluated. She is just a little "floppy" in her trunk and shoulder girdle. My questions are the following:1. Will wearing the doc band make it more difficult to work on her tummy time, rolling, and sitting?2. Any one elso have evaluation on low tone know what I can expect from the neuro dr, what tests for example, I may expect?

FareChase - Search multiple travel sites in one click.

[Guest guest]

Hi , My 8 mo. old was diagnosed w/ brachy also and he has been in a band since 11-18-05. My peditrician said his flatness would round out at 2 mos. and at 6 mos. I made and appt. w/ the peditrician just for the referreals I needed for a helmet. She too said "it would round out and a helmet would make him look retarded". I knew from experience from my older daughter that it would not round out. My daughter didn't have any issues w/ plagio, but she was born w/ low muscle tone. The drs. at birth described her as being floppy. She met all her developmental milestones really late, and didn't start to walk until 18 mos. She had all over low muscle tone, but that's it. She was tested for muscular distrophy and cerebal palsey by a nerologist, and she didn't have it. At 18 mos. old the peditrician finally agreed to put her in physical and occupational therapy ( I had been wanting this

since she was 6 mos. and not rolling yet, but the dr. said not to worry. Therefore I felt that she missed a years worth of therapy) The neurologist said to put her in gymnastics for building muscle strength. She really loved the gymnastics, and didn't know that she was building her strength up at the same time. I put her in a mom and tot class at 15 mos. She is now 7 yrs. old and has come a long way. I don't really see the low tone anymore, and she thinks that she id the stongest person around and that's all that matters anyway. I did not want to take the advice from my peditrician in telling me my son's head would round out. I didn't want to make the same mistake with my son that I did w/ my daughter because the dr. made me feel like I was stupid for wanting therapy for her at 6 mos. The therapy worked good for her too. Ever since my son was banded he can roll all around now, because he is

rolling on a round object (his band) and not his head which is flat in the back. The band shouldn't interfere w/ sitting and tummy time. It only weighs 6-10 oz. For the low tone, your dr. may want to rule out cerebal palsey and other things. Check w/ you city or or local gymnastic centers to see if they have a mom and tot class. It is really fun for you and your child and it will help her with balance, coordination and strength. They have things for her to crawl in, bounce on, and jump into when she gets older. I hope this helps. It defentaly helped my daughter. Janie and (8 mos. severe brachy and tort banded on 11-18-05).Chad Damon <chadwick1000@...> wrote: Hi, my name is and I have a 6mo dd Olivia who was just evaluated by ct for doc band for brachy. Currently

we are awaiting auth to continue. Thankfully my ped referred me so she said she would write the letter of med nec.Feeling a little guilty about my 3yo with plagio who never got this opportunity. Our old ped kept telling me not to worry. She made me feel like I was being unreasonable about asking. Now it is too late and my new ped said she would have definitely referred him. Anyway, my 6mo is also being referred to a neuro for low tone to be evaluated. She is just a little "floppy" in her trunk and shoulder girdle. My questions are the following:1. Will wearing the doc band make it more difficult to work on her tummy time, rolling, and sitting?2. Any one elso have evaluation on low tone know what I can expect from the neuro dr, what tests for example, I may expect?

FareChase - Search multiple travel sites in one click.

[Guest guest]

asked:

> 1. Will wearing the doc band make it more difficult to work on her

> tummy time, rolling, and sitting?

>

> 2. Any one elso have evaluation on low tone know what I can expect

> from the neuro dr, what tests for example, I may expect?

Hi :

I just wanted to say that my son had some low tone issues (they weren't

discussed with me when he was younger, he was just diagnosed by an OT in August

at age 5 for hypotonia / dyspraxia) -- he was in a DOC band for scaphocephalic

head shape from 6 months to 11 and 1/2 months -- and this band covered most of

his head, unlike the typical DOC band.

He didn't like tummy time -- (but never did), and did what we called an " army

crawl " - (flat on his belly, used his elbows/arms to scoot/move). We didn't

know about his tone issues then, and so didn't encourage him to try to get up on

all fours -- he just didn't. He got to where he needed to go (quickly), and we

didn't think much of it. He started to walk on his first birthday. I'm not

sure about the rolling part -- I know he was a little late for that, but not by

much. When he started walking he pretty much went to running -- and still runs

most everywhere (whenever possible).

I'm not sure about neurological tests for younger children -- my son was

evaluated by an OT and is in therapy 2x a month right now.

Getting a diagnosis this young is great -- you can give your daughter

opportunities to use the muscles she might avoid using if you weren't aware. I

don't think the DOC band affected his mobility in any way -- and it definitely

helped his head shape.

Good luck to you and your daughter.

aka " Kali "

mom to Quinn, born 11/19/1999 (C-Breech) DOC Grad on 10/00 for scaphocelphalic

(long and narrow) head shape

http://www.cappskids.org/CAPPSPlagioKidQuinn.htm

[Guest guest]

asked:

> 1. Will wearing the doc band make it more difficult to work on her

> tummy time, rolling, and sitting?

>

> 2. Any one elso have evaluation on low tone know what I can expect

> from the neuro dr, what tests for example, I may expect?

Hi :

I just wanted to say that my son had some low tone issues (they weren't

discussed with me when he was younger, he was just diagnosed by an OT in August

at age 5 for hypotonia / dyspraxia) -- he was in a DOC band for scaphocephalic

head shape from 6 months to 11 and 1/2 months -- and this band covered most of

his head, unlike the typical DOC band.

He didn't like tummy time -- (but never did), and did what we called an " army

crawl " - (flat on his belly, used his elbows/arms to scoot/move). We didn't

know about his tone issues then, and so didn't encourage him to try to get up on

all fours -- he just didn't. He got to where he needed to go (quickly), and we

didn't think much of it. He started to walk on his first birthday. I'm not

sure about the rolling part -- I know he was a little late for that, but not by

much. When he started walking he pretty much went to running -- and still runs

most everywhere (whenever possible).

I'm not sure about neurological tests for younger children -- my son was

evaluated by an OT and is in therapy 2x a month right now.

Getting a diagnosis this young is great -- you can give your daughter

opportunities to use the muscles she might avoid using if you weren't aware. I

don't think the DOC band affected his mobility in any way -- and it definitely

helped his head shape.

Good luck to you and your daughter.

aka " Kali "

mom to Quinn, born 11/19/1999 (C-Breech) DOC Grad on 10/00 for scaphocelphalic

(long and narrow) head shape

http://www.cappskids.org/CAPPSPlagioKidQuinn.htm

[Guest guest]

I agree. The problem is usually not docs who are too aggressive --

usually they aren't aggressive enough. Mine gave me only Celebrex at

first, then Plaquenil. I didn't get methotrexate for about 6 months

after diagnosis, and then Remicade about 6 months after that. I

pointed out to my doc that many docs give Remicade/Enbrel etc. from

the beginning now, and he acknowledged that but said that he's " old-

fashioned. " He won't give me prednisone at ALL. In the meantime,

I'm sure that I sustained joint damage, which is probably why even on

Remicade I still have a lot of pain and loss of range of motion. If

yours is willing to treat you for RA if the prednisone helps, go for

it. Yes the drugs all have side effects and potential dangers, but

RA has the potential to be far worse than any of them.

Good luck to you.

> >

> > My name is Lori and I live in southern California. I have been

> > experiencing many symptoms of RA over the past several months so

my

> > doctor referred me to a rheumatologist who I saw yesterday. So

far, my

> > blood tests are coming back negative and I don't have any

obivious

> > signs

> > of swelling. My hands and feet hurt alot and I have morning

> > stiffness. I

> > have had tendonitis in my left wrist 3 times in the last 4

months. I

> > have

> > also noticed that lately, my eyes have been very dry. My

> > rheumatologist

> > feels that I may be in the beginning stages of RA and has put me

on

> > 10mg

> > of prednisone once a day for two weeks. I have an appointment to

see

> > him

> > again at that time. He says if my symptoms dissappear or improve

over

> > the next two weeks as a result of the prednisone that would be an

> > indicator to him that I may very well have RA. From our

conversation

> > yesterday he seems to be of the opinion that an aggressive course

of

> > action would be his choice in treating this. I'm not sure exactly

what

> > that entails, but he did mention putting me on a drug that I

would take

> > for the rest of my life (I'm 52). I am writing today to get

other's

> > opinions as I am new to all this and frankly very confused and

scared.

> > Any suggestions, questions I should ask, etc. would be greatly

> > appreciated.

>

[Guest guest]

"Janie P." <rjjpencek@...> wrote: Hi , My 8 mo. old was diagnosed w/ brachy also and he has been in a band since 11-18-05. My peditrician said his flatness would round out at 2 mos. and at 6 mos. I made and appt. w/ the peditrician just for the referreals I needed for a helmet. She too said "it would round out and a helmet would make him look retarded". I knew from experience from my older daughter that it would not round out. My daughter didn't have any issues w/ plagio, but she was born w/ low muscle tone. The drs. at birth described her as being floppy. She met all her developmental milestones really late, and didn't start to walk until 18 mos. She had all over low muscle tone, but that's it. She was tested for muscular distrophy and cerebal palsey by a

nerologist, and she didn't have it. At 18 mos. old the peditrician finally agreed to put her in physical and occupational therapy ( I had been wanting this since she was 6 mos. and not rolling yet, but the dr. said not to worry. Therefore I felt that she missed a years worth of therapy) The neurologist said to put her in gymnastics for building muscle strength. She really loved the gymnastics, and didn't know that she was building her strength up at the same time. I put her in a mom and tot class at 15 mos. She is now 7 yrs. old and has come a long way. I don't really see the low tone anymore, and she thinks that she id the stongest person around and that's all that matters anyway. I did not want to take the advice from my peditrician in telling me my son's head would round out. I didn't want to make the same mistake with my son that I did w/ my daughter because the dr.

made me feel like I was stupid for wanting therapy for her at 6 mos. The therapy worked good for her too. Ever since my son was banded he can roll all around now, because he is rolling on a round object (his band) and not his head which is flat in the back. The band shouldn't interfere w/ sitting and tummy time. It only weighs 6-10 oz. For the low tone, your dr. may want to rule out cerebal palsey and other things. Check w/ you city or or local gymnastic centers to see if they have a mom and tot class. It is really fun for you and your child and it will help her with balance, coordination and strength. They have things for her to crawl in, bounce on, and jump into when she gets older. I hope this helps. It defentaly helped my daughter. Janie and (8 mos. severe brachy and tort banded on 11-18-05).Chad Damon <chadwick1000@...> wrote: Hi, my name is and I have a 6mo dd Olivia who was just evaluated by ct for doc band for brachy. Currently we are awaiting auth to continue. Thankfully my ped referred me so she said she would write the letter of med nec.Feeling a little guilty about my 3yo with plagio who never got this opportunity. Our old ped kept telling me not to worry. She made me feel like I was being unreasonable about asking. Now it is too late and my new ped said she would have definitely referred him. Anyway, my 6mo is also being referred to a neuro for low tone to be evaluated. She is just a little "floppy" in her trunk and shoulder girdle. My questions are the following:1. Will wearing the doc band make it more difficult to work on her tummy time, rolling, and sitting?2. Any one elso have

evaluation on low tone know what I can expect from the neuro dr, what tests for example, I may expect? FareChase - Search multiple travel sites in one click.

FareChase - Search multiple travel sites in one click.

[Guest guest]

"Janie P." <rjjpencek@...> wrote: Hi , My 8 mo. old was diagnosed w/ brachy also and he has been in a band since 11-18-05. My peditrician said his flatness would round out at 2 mos. and at 6 mos. I made and appt. w/ the peditrician just for the referreals I needed for a helmet. She too said "it would round out and a helmet would make him look retarded". I knew from experience from my older daughter that it would not round out. My daughter didn't have any issues w/ plagio, but she was born w/ low muscle tone. The drs. at birth described her as being floppy. She met all her developmental milestones really late, and didn't start to walk until 18 mos. She had all over low muscle tone, but that's it. She was tested for muscular distrophy and cerebal palsey by a

nerologist, and she didn't have it. At 18 mos. old the peditrician finally agreed to put her in physical and occupational therapy ( I had been wanting this since she was 6 mos. and not rolling yet, but the dr. said not to worry. Therefore I felt that she missed a years worth of therapy) The neurologist said to put her in gymnastics for building muscle strength. She really loved the gymnastics, and didn't know that she was building her strength up at the same time. I put her in a mom and tot class at 15 mos. She is now 7 yrs. old and has come a long way. I don't really see the low tone anymore, and she thinks that she id the stongest person around and that's all that matters anyway. I did not want to take the advice from my peditrician in telling me my son's head would round out. I didn't want to make the same mistake with my son that I did w/ my daughter because the dr.

made me feel like I was stupid for wanting therapy for her at 6 mos. The therapy worked good for her too. Ever since my son was banded he can roll all around now, because he is rolling on a round object (his band) and not his head which is flat in the back. The band shouldn't interfere w/ sitting and tummy time. It only weighs 6-10 oz. For the low tone, your dr. may want to rule out cerebal palsey and other things. Check w/ you city or or local gymnastic centers to see if they have a mom and tot class. It is really fun for you and your child and it will help her with balance, coordination and strength. They have things for her to crawl in, bounce on, and jump into when she gets older. I hope this helps. It defentaly helped my daughter. Janie and (8 mos. severe brachy and tort banded on 11-18-05).Chad Damon <chadwick1000@...> wrote: Hi, my name is and I have a 6mo dd Olivia who was just evaluated by ct for doc band for brachy. Currently we are awaiting auth to continue. Thankfully my ped referred me so she said she would write the letter of med nec.Feeling a little guilty about my 3yo with plagio who never got this opportunity. Our old ped kept telling me not to worry. She made me feel like I was being unreasonable about asking. Now it is too late and my new ped said she would have definitely referred him. Anyway, my 6mo is also being referred to a neuro for low tone to be evaluated. She is just a little "floppy" in her trunk and shoulder girdle. My questions are the following:1. Will wearing the doc band make it more difficult to work on her tummy time, rolling, and sitting?2. Any one elso have

evaluation on low tone know what I can expect from the neuro dr, what tests for example, I may expect? FareChase - Search multiple travel sites in one click.

FareChase - Search multiple travel sites in one click.

[Guest guest]

Welcome, Lori. I, too, have all the symptoms of RA except swelling and my labs

are always negative. I responded beautifully to prednisone but my dr. still

won't call it RA. He calls it " inflammatory arthritis " . I also have some

symptoms of fibromyalgia. Good luck with the prednisone. It's the nastiest

thing that I love so much. I personally haven't had many side effects and I

was on a whopper dose for a while, although my face did get puffy on 30 mg and

up. I wish you the best as you try to nail down your condition. By

" aggressive " I assume your dr. means drugs, but make sure you ask him.

laura from IL

loriginsberg@... wrote: Hello:

My name is Lori and I live in southern California. I have been

experiencing many symptoms of RA over the past several months so my

doctor referred me to a rheumatologist who I saw yesterday. So far, my

blood tests are coming back negative and I don't have any obivious signs

of swelling. My hands and feet hurt alot and I have morning stiffness. I

have had tendonitis in my left wrist 3 times in the last 4 months. I have

also noticed that lately, my eyes have been very dry. My rheumatologist

feels that I may be in the beginning stages of RA and has put me on 10mg

of prednisone once a day for two weeks. I have an appointment to see him

again at that time. He says if my symptoms dissappear or improve over

the next two weeks as a result of the prednisone that would be an

indicator to him that I may very well have RA. From our conversation

yesterday he seems to be of the opinion that an aggressive course of

action would be his choice in treating this. I'm not sure exactly what

that entails, but he did mention putting me on a drug that I would take

for the rest of my life (I'm 52). I am writing today to get other's

opinions as I am new to all this and frankly very confused and scared.

Any suggestions, questions I should ask, etc. would be greatly

appreciated.

Thank you,

Lori

[Guest guest]

Hi Cori,

My name is Ann and my son is 7 1/2. I know exactly what you mean. My son is

going through the same things. Is getting any OT right now? The reason

I asked is because my son does the same things as yours and we had an OT

evaluation done and he has sensory dysfunction. What that means to my

knowledge is that he seeks out rough and tumble so to speak to help him

organize his thoughts when he's over whelmed. I just ordered a thing from my

therapist called a " Body Sock " It's kinda weird looking but is suppose to

help tremendously. We are going to try it. Also she recommends a small

trampoline for the house which he can jump on. If your son isn't getting OT

I would have an evaluation done. Early help is the key. Hope this helps.

Ann

( ) New to group

Hi everyone,

My name is Cori, I have 2 boys. ph is 8 yrs old and is a very

spirited child and is 5 yrs old and has been diagnosed with

Asperger Syndrome within the past few months. Before I had even

heard of this I would say was my not so easy child. He never

threw tantrums but he would let out a siren scream when things

didn't go his way. I still say if I had him 1st, he'd be an only

child.

My problem is is a very caring, happy child but now he is in

this strange frame of mind. He is the boss and that is it. He

bounces around the house and is constantly running. There is a rule

in our house " no running " . He will also get physical with people but

never out of anger. Except for his brother. He will hit for no

reason though. I have NO patience for it anymore. We have tried

positive reinforcement, sticker charts, he just does what he wants.

He has no fear of older kids, nor of me or his father. I don't

believe in medicating especially this young. Does anyone have any

ideas? I really need it!!!

Cori

[Guest guest]

Cori,

Also when your nerves have had it try and remember this is a neurological

disorder. He can't help it. I do that and it brings back my patience. P.S.

My son isn't on any meds right now eigher.

Ann

( ) New to group

Hi everyone,

My name is Cori, I have 2 boys. ph is 8 yrs old and is a very

spirited child and is 5 yrs old and has been diagnosed with

Asperger Syndrome within the past few months. Before I had even

heard of this I would say was my not so easy child. He never

threw tantrums but he would let out a siren scream when things

didn't go his way. I still say if I had him 1st, he'd be an only

child.

My problem is is a very caring, happy child but now he is in

this strange frame of mind. He is the boss and that is it. He

bounces around the house and is constantly running. There is a rule

in our house " no running " . He will also get physical with people but

never out of anger. Except for his brother. He will hit for no

reason though. I have NO patience for it anymore. We have tried

positive reinforcement, sticker charts, he just does what he wants.

He has no fear of older kids, nor of me or his father. I don't

believe in medicating especially this young. Does anyone have any

ideas? I really need it!!!

Cori

[Guest guest]

Yup, let the doc give him medicine. He will not be over medicated and he will be

better, and so will you. Sandy

mytwoboys97_00 <mytwoboys97_00@...> wrote: Hi everyone,

My name is Cori, I have 2 boys. ph is 8 yrs old and is a very

spirited child and is 5 yrs old and has been diagnosed with

Asperger Syndrome within the past few months. Before I had even

heard of this I would say was my not so easy child. He never

threw tantrums but he would let out a siren scream when things

didn't go his way. I still say if I had him 1st, he'd be an only

child.

My problem is is a very caring, happy child but now he is in

this strange frame of mind. He is the boss and that is it. He

bounces around the house and is constantly running. There is a rule

in our house " no running " . He will also get physical with people but

never out of anger. Except for his brother. He will hit for no

reason though. I have NO patience for it anymore. We have tried

positive reinforcement, sticker charts, he just does what he wants.

He has no fear of older kids, nor of me or his father. I don't

believe in medicating especially this young. Does anyone have any

ideas? I really need it!!!

Cori

[Guest guest]

mytwoboys97_00 <mytwoboys97_00@...> wrote: Hi everyone,

My name is Cori, I have 2 boys. ph is 8 yrs old and is a very

spirited child and is 5 yrs old and has been diagnosed with

Asperger Syndrome within the past few months. Before I had even

heard of this I would say was my not so easy child. He never

threw tantrums but he would let out a siren scream when things

didn't go his way. I still say if I had him 1st, he'd be an only

child.

My problem is is a very caring, happy child but now he is in

this strange frame of mind. He is the boss and that is it. He

bounces around the house and is constantly running. There is a rule

in our house " no running " . He will also get physical with people but

never out of anger. Except for his brother. He will hit for no

reason though. I have NO patience for it anymore. We have tried

positive reinforcement, sticker charts, he just does what he wants.

He has no fear of older kids, nor of me or his father. I don't

believe in medicating especially this young. Does anyone have any

ideas? I really need it!!!

Cori

I was wondering if he has any toys or games that he loves that you could use as

a " carrot? "

Roxanna

Always Remember You're Unique

Just Like Everyone Else

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

Music Unlimited - Access over 1 million songs. Try it free.

[Guest guest]

Cori,

This is sort of a no brainer, but we always used a time out to his room

for our son. He's 17 now, and uses a self-imposed time out to his room

whenever he feels out of control or agitated. After a while, he'll come

out and often will apologize for his behavior. I never " banished " him

to his room. I just told him " It seems to me that you need to take a

break in your room for a while. As usual, your mileage may vary. Liz

On Nov 28, 2005, at 7:13 PM, mytwoboys97_00 wrote:

> Hi everyone,

>

> My name is Cori, I have 2 boys. ph is 8 yrs old and is a very

> spirited child and is 5 yrs old and has been diagnosed with

> Asperger Syndrome within the past few months. Before I had even

> heard of this I would say was my not so easy child. He never

> threw tantrums but he would let out a siren scream when things

> didn't go his way. I still say if I had him 1st, he'd be an only

> child.

> My problem is is a very caring, happy child but now he is in

> this strange frame of mind. He is the boss and that is it. He

> bounces around the house and is constantly running. There is a rule

> in our house " no running " . He will also get physical with people but

> never out of anger. Except for his brother. He will hit for no

> reason though. I have NO patience for it anymore. We have tried

> positive reinforcement, sticker charts, he just does what he wants.

> He has no fear of older kids, nor of me or his father. I don't

> believe in medicating especially this young. Does anyone have any

> ideas? I really need it!!!

>

> Cori

>

>

>

>

>

>

>

>

[Guest guest]

Hello and welcome! You certainly have picked the

right list to join!!! Several here will be able to

relate more than you can possibly imagine. You are

also another young one. Ra isn't discriminate age

wise. You mentioned that you have just started back

on meds., what type, may I ask? How long have you now

been on them? Hopefully they will kick in soon!

Unfortunately, depression and anger go with the

territory and most if not all of us can certainly

relate to that. I don't know how any of us cope with

our limitations? It isn't easy a lot of the time! A

lot here in the group are currently having troubles

and/or flares and so when that occurs bare with us as

it takes awhile to respond. Try not to get discouraged

on that front! You have an unusual name, how do you

pronounce it? Where are you from? Hopefully it isn't

as cold there! This is a good place for support and

information - and a are great! Most in the

group, if not all are the very desciption of

compassion and understanding. Nice to meet you!

Again, welcome! Take care. Kim

--- ie Peels <tnvolfan_32@...> wrote:

> Hello I am new to the group. I wanted to join a list

> that could relate to me....

> I am 32 and have RA. I just started back on the

> meds and so far cant tell any difference. I get

> depressed and angry. I dont always cope well with

> not being able to do things. My mind says I can but

> my body says NO.

> Anyway I just wanted to introduce myself......

>

> Loucretia

>

>

> ---------------------------------

>

> Find Great Deals on Holiday Gifts at

> Shopping

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

__________________________________________________

[Guest guest]

Hi :

Welcome to the group and Happy Birthday! I am 51 and

was dx with RA and Raynaud's almost 7 years ago, and

Fibro and OA within the past two years. I hear you

about being one age and feeling quite another - some

days I feel 80, and even little old ladies can pass me

by in the stores at a quicker pace than I can manage

lol.

I had to give up my jewelery making because of the RA,

and I really miss it. I also did t-shirt art. My

hands just could not do it any longer, so I can

sympathize with you on that, but instead I read, a

lot!

It sounds like you really have your hands full with

the kids home on break. My son is working towards his

degree in Special Education and teaches part-time in a

class of autistic children, ages 5-10. They are very

special kids, and he absolutely loves working with

them, although they are a handful. You and your

partner must be wonderful parents, and your boys lucky

to have you both.

I am so sorry that your SSD/Medicare do not help you

more in obtaining the prescriptions you need. You

probably have checked all options but, just in case,

have you looked into patient assistance programs

through the individual medications?

I, too, have a handicapped placard which I use when I

need to, and often get looks from others as I get out

of my car. It is very hard to make people understand

when we look " normal " to them, but are in pain 24/7.

Mind you, it takes me a few minutes to get in and out

of my car, and I hobble to the store, but still, I get

those looks like I am faking it or something. I wish.

Anyway, I am rambling on, welcome again to the group,

a more wonderful bunch of caring and supportive people

would be hard to find. Wishing you a Merry Christmas

- hang in there!

Kathe in CA

--- T <spinningdyke@...> wrote:

> Hi,

> My name is , I have RA.and Asthma (severe,

> been intubated 13x) and Diabetes induced by long

> term, high dose prednisone use.Also, degenerative

> disc disease (fusion at L3/4) and osteoarthritis.

> Dx'ed with RA in Jan 2003. Currently the meds I'm

> supposed to be on, I say supposed, because I am on

> SSD and Medicare, and the meds are too expensive....

> Humera (doc is changing it to Remicade in Jan, b/c

> it gets billed differently, and will be covered)

> MTX (was put on for the asthma experimentally

> before RA dx'd) off most of this year due to no

> insurance, just restarted this month.

> Plaquenil (also not currently on due to $)

> Folic Acid

> Advair (again, the $$ ) $150 for ONE inhaler????

> MS-contin

> Seasonale for period regulation

> and back on Prednisone because currently have an

> upper resp. infec.

>

> Anyway, I live in Oklahoma with my partner, Amy

> and our 2 boys, one is 7 and one is 12. The 7 year

> old has Down Syndrome and Autism (and is currently

> in time out for tipping over the Christmas tree!).

> He is non verbal and we are working on the potty

> training, so he is still in pull ups. He also

> doesn't understand why there are times (this week

> especially) that Mommy can't pick him up.

> The 12 yo has ADHD and Aspergers and typical

> pre-teen attitudes on top of that!

> (did I mention they are home on Christmas

> break?????)

>

> I'm very glad to have found this group. I've been

> suffering lately from the " but you don't LOOK sick "

> syndrome from others (not immediate in house family,

> but extended that I see at the holidays).

> No one gets why I have a handicapped parking

> pass....I use it the days I need to, and am dam*

> glad to have it to use.

> I am getting the " you WERE working, why can't you

> now " ..... ummm, bosses don't take kindly to workers

> missing more than half of schedules b/c of illness.

> And, to top it off, today is my 40th birthday. Not

> bummed about turning 40, bummed about being forty

> and FEELING a heck of alot older!

>

> The RA is really beginning to affect my hands. I

> used to knit, crochet, spin and weave ALOT. Now, if

> I can get a few stitches off, I feel lucky.

>

> Anyway, just realized how long this is getting. I

> am glad to have found the group.

>

>

> __________________________________________________

>

[Guest guest]

In a message dated 12/21/2005 3:39:08 PM Central Standard Time,

spinningdyke@... writes:

> today is my 40th birthday

Happy Birthday ......

peace,

gayle who is chasing rainbows

[Guest guest]

,

So sorry for the rough time that you have been having.

Where do you live in Oklahoma? I live in Ft. ,

Arkansas. Welcome to the group. You will find a lot of

helpful info. here. I hope you feel better soon.

Beth in AR

--- T <spinningdyke@...> wrote:

> Hi,

> My name is , I have RA.and Asthma (severe,

> been intubated 13x) and Diabetes induced by long

> term, high dose prednisone use.Also, degenerative

> disc disease (fusion at L3/4) and osteoarthritis.

> Dx'ed with RA in Jan 2003. Currently the meds I'm

> supposed to be on, I say supposed, because I am on

> SSD and Medicare, and the meds are too expensive....

> Humera (doc is changing it to Remicade in Jan, b/c

> it gets billed differently, and will be covered)

> MTX (was put on for the asthma experimentally

> before RA dx'd) off most of this year due to no

> insurance, just restarted this month.

> Plaquenil (also not currently on due to $)

> Folic Acid

> Advair (again, the $$ ) $150 for ONE inhaler????

> MS-contin

> Seasonale for period regulation

> and back on Prednisone because currently have an

> upper resp. infec.

>

> Anyway, I live in Oklahoma with my partner, Amy

> and our 2 boys, one is 7 and one is 12. The 7 year

> old has Down Syndrome and Autism (and is currently

> in time out for tipping over the Christmas tree!).

> He is non verbal and we are working on the potty

> training, so he is still in pull ups. He also

> doesn't understand why there are times (this week

> especially) that Mommy can't pick him up.

> The 12 yo has ADHD and Aspergers and typical

> pre-teen attitudes on top of that!

> (did I mention they are home on Christmas

> break?????)

>

> I'm very glad to have found this group. I've been

> suffering lately from the " but you don't LOOK sick "

> syndrome from others (not immediate in house family,

> but extended that I see at the holidays).

> No one gets why I have a handicapped parking

> pass....I use it the days I need to, and am dam*

> glad to have it to use.

> I am getting the " you WERE working, why can't you

> now " ..... ummm, bosses don't take kindly to workers

> missing more than half of schedules b/c of illness.

> And, to top it off, today is my 40th birthday. Not

> bummed about turning 40, bummed about being forty

> and FEELING a heck of alot older!

>

> The RA is really beginning to affect my hands. I

> used to knit, crochet, spin and weave ALOT. Now, if

> I can get a few stitches off, I feel lucky.

>

> Anyway, just realized how long this is getting. I

> am glad to have found the group.

>

>

> __________________________________________________

>

[Guest guest]

Happy Birthday . My 41st birthday is Monday.

Also have a Merry Christmas.

Beth in AR

--- rainbowgayle@... wrote:

> In a message dated 12/21/2005 3:39:08 PM Central

> Standard Time,

> spinningdyke@... writes:

>

> > today is my 40th birthday

>

> Happy Birthday ......

> peace,

> gayle who is chasing rainbows

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

__________________________________________

DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.

[Guest guest]

Welcome to the group. This is a really good one particularly if you like

giving biomedical supplementation/ intervention. I have learned a lot here

and have been able to help my child a great deal.

Best,

Haleh

--- DarMom <mom4wes@...> wrote:

> Hello, group

>

> I just joined the group. My son will be 4 in March. He has PDD, has

> participated in ECI and is attending preschool and 3 hours a day of OT and

> Speech therapy. I am still learning, not only about Austism Spectrum

> Disorders, but also about the maze of resources to go through to get help

> and information. I will read through the archives before asking questions. I

> appreciate this group and can see it will be helpful to me and my son.

>

>

>

> I'm not tense, just terribly alert.

>

> ---------------------------------

> DSL Something to write home about. Just $16.99/mo. or less

>

>

[Guest guest]

Thank you! I haven't started a regimen yet. That's why I think this group

will be helpful to us and I look forward to learning a great deal. Who knows? I

might be able to contribute something myself! :-)

Darla

haleh niazmand <halniaz@...> wrote:

Welcome to the group. This is a really good one particularly if you like

giving biomedical supplementation/ intervention. I have learned a lot here

and have been able to help my child a great deal.

Best,

Haleh

--- DarMom <mom4wes@...> wrote:

> Hello, group

>

> I just joined the group. My son will be 4 in March. He has PDD, has

> participated in ECI and is attending preschool and 3 hours a day of OT and

> Speech therapy. I am still learning, not only about Austism Spectrum

> Disorders, but also about the maze of resources to go through to get help

> and information. I will read through the archives before asking questions. I

> appreciate this group and can see it will be helpful to me and my son.

>

>

>

> I'm not tense, just terribly alert.

>

> ---------------------------------

> DSL Something to write home about. Just $16.99/mo. or less

>

>