new to the group

[Guest guest]

It sounds as though he has oral motor weaknesses, and that he would benefit

greatly from some exercises to strengthen those muscles.

Have you already read the book called " The Late Talker " ?

Becky

**************Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)

[Guest guest]

Please read The Late Talker and take some advice from the veterans

here on getting the right dx. The candle blowing sticks out. That, i

believe is a 10 month old skill. We got it at 2.5 years and

intermittently, a big clue to our personal puzzle.

>

> I have a 3 year old son who I am not sure is a late talker or has

> something more neurologically based going on. Here is the brief

> synopsis. He had a speech evaluation done about 6 months ago and

we

> were told he had a 28% deficiency (whatever that means). His

> receptive score was normal. The therapist and our doctor told us

not

> to worry, he was just a late talker and he would turn the corner.

> While he has shown some immprovement in the past 6 months, he is

not

> where I would expect him to be even if he is a late talker. The

> biggest issue I have is that he doesn't ever finish words, whether

> multi syllable or not. Food is " foo " . Dog is " Dah " . Mom

is " ma " .

> His brother Ian is " E " . His sister Meaghan is " Meh " . He also has

> problems blowing out of his mouth. For example candles on a

birthday

> cake are a near impossibility for him. There is air coming out,

but

> it is slurry and not focused in a stream like it should be.

>

> I am at my wits end being told he is a late talker when I think

there

> is something more going on. Am I just being overprotective or do I

> have a legitimate worry here. Any suggestions? Ideas? Where is

the

> best place to get some information about what my next steps are?

>

> Any thoughts are more than welcome.

>

[Guest guest]

Thanks for the advice. I am going to get the book tonight.

> >

> > I have a 3 year old son who I am not sure is a late talker or has

> > something more neurologically based going on. Here is the brief

> > synopsis. He had a speech evaluation done about 6 months ago and

> we

> > were told he had a 28% deficiency (whatever that means). His

> > receptive score was normal. The therapist and our doctor told us

> not

> > to worry, he was just a late talker and he would turn the

corner.

> > While he has shown some immprovement in the past 6 months, he is

> not

> > where I would expect him to be even if he is a late talker. The

> > biggest issue I have is that he doesn't ever finish words,

whether

> > multi syllable or not. Food is " foo " . Dog is " Dah " . Mom

> is " ma " .

> > His brother Ian is " E " . His sister Meaghan is " Meh " . He also

has

> > problems blowing out of his mouth. For example candles on a

> birthday

> > cake are a near impossibility for him. There is air coming out,

> but

> > it is slurry and not focused in a stream like it should be.

> >

> > I am at my wits end being told he is a late talker when I think

> there

> > is something more going on. Am I just being overprotective or do

I

> > have a legitimate worry here. Any suggestions? Ideas? Where is

> the

> > best place to get some information about what my next steps are?

> >

> > Any thoughts are more than welcome.

> >

>

[Guest guest]

Thanks for the advice. I am going to get the book tonight.

>

[Guest guest]

WELCOME CHRISTIE!!! im 38 yrs.old & have had ra since i was 5yrs.old..i take

SEVERAL MEDS.one is mtx.i take 7pills every friday.. lortabs for PAIN!! folic

acid for my BONES(osteoporosis).neurotin for(neuropathy). this is a HORRIBLE

DISEASE & i have been in constant PAIN for several weeks now!!!! YES i agree,do

take mtx at different times,not all together.. GOOD LUCK & I HOPE YOU WILL FIND

THIS GROUP HELPFUL!!! god bless, melyndagamez 3/29/08 9:40p.m.central time>

[ ] New to the group

Hi everyone,

I've just joined the group and have already been reading some of the

posts. I was diagnosed with RA in December. I was having so much pain

I just wanted to cry all the time. It hurt all over! Every joint and

even my muscles hurt. The doc started the Methotrexate, first two

pill a week for a few weeks, then three pills and now we are up to

four pills a week. It made me have a sore throat and terrible neck

pain. So he told me to break the dose up. I take two pills at lunch

on Fridays and then eat lunch, then I do the same at dinner time.

Eating after taking the pills helps to make the pills go down and not

dissolve in my throat, which was causing the neck and throat pain. I

also take Folic acid, Naproxen and Tylenol. Anyway, I'm still having

a lot of pain and I have Baker's cyst behind my knees which make my

legs burn. I had to put an eggshell foam pad on my bed to help the

leg pain. Overall the pain is nothing like it was, at least now I can

function most days. But the day after I take the Methotrexate, I just

feel like I've been zapped of all my energy and my stomach is upset.

I just feel plain terrible for about 24 hours. My husband is very

sweet and supportive. He had a near fatal stroke about three years

ago and is disabled. I am his only caregiver. It is very frustrating

that I can't always do the things I was accustomed to doing. I work

full time and I use to be able to do everything on the weekends like

clean house, do laundry, mow the yard, etc. He can't do any of these

things. Now my housekeeping has really slipped and I'm dreading

Spring because I know the yard is going to need attention and I'm not

sure I can do it. I can barely get the grocery shopping done and keep

the dishes washed. Some mornings just getting out of bed is a chore.

I also have Hashimoto's Thyroiditis, which is why it took so long to

diagnose the RA. They just thought it was my low thyroid manifesting

all these symptoms. I know you all have probably been through the

same things and possibly worse, so if you have any suggestions on how

to continue to function please let me know. I am really sick of

feeling badly all the time. Thanks for listening.

Christie

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

[Guest guest]

Thanks for the welcome Melynda. My son had JRA but he has " outgrown "

most of it. He functions relatively well now without any medications.

His wrists and ankles bother him sometimes but not nearly as bad as

when he was young. I remember times when his little knees would get

red and hot and swell to twice their normal size. He suffered so

badly. My mother had RA too and her hands became deformed. I guess I

should have expected to have it too. I'm 51 years old and I think I

have had it for a long time but it just wasn't properly diagnosed

because of the thyroid problem. Oh well, such is life, we must press

on. Hope your pain improves soon.

Be blessed,

Christie

--- In , Melynda Gamez <melyndagamez@...>

wrote:

>

> WELCOME CHRISTIE!!! im 38 yrs.old & have had ra since i was

5yrs.old..i take SEVERAL MEDS.one is mtx.i take 7pills every friday..

lortabs for PAIN!! folic acid for my BONES(osteoporosis).neurotin for

(neuropathy). this is a HORRIBLE DISEASE & i have been in constant

PAIN for several weeks now!!!! YES i agree,do take mtx at different

times,not all together.. GOOD LUCK & I HOPE YOU WILL FIND THIS GROUP

HELPFUL!!! god bless, melyndagamez 3/29/08 9:40p.m.central time>

>

>

> [ ] New to the group

>

> Hi everyone,

> I've just joined the group and have already been reading some of

the

> posts. I was diagnosed with RA in December. I was having so much

pain

> I just wanted to cry all the time. It hurt all over! Every joint

and

> even my muscles hurt. The doc started the Methotrexate, first two

> pill a week for a few weeks, then three pills and now we are up to

> four pills a week. It made me have a sore throat and terrible neck

> pain. So he told me to break the dose up. I take two pills at lunch

> on Fridays and then eat lunch, then I do the same at dinner time.

> Eating after taking the pills helps to make the pills go down and

not

> dissolve in my throat, which was causing the neck and throat pain.

I

> also take Folic acid, Naproxen and Tylenol. Anyway, I'm still

having

> a lot of pain and I have Baker's cyst behind my knees which make my

> legs burn. I had to put an eggshell foam pad on my bed to help the

> leg pain. Overall the pain is nothing like it was, at least now I

can

> function most days. But the day after I take the Methotrexate, I

just

> feel like I've been zapped of all my energy and my stomach is

upset.

> I just feel plain terrible for about 24 hours. My husband is very

> sweet and supportive. He had a near fatal stroke about three years

> ago and is disabled. I am his only caregiver. It is very

frustrating

> that I can't always do the things I was accustomed to doing. I work

> full time and I use to be able to do everything on the weekends

like

> clean house, do laundry, mow the yard, etc. He can't do any of

these

> things. Now my housekeeping has really slipped and I'm dreading

> Spring because I know the yard is going to need attention and I'm

not

> sure I can do it. I can barely get the grocery shopping done and

keep

> the dishes washed. Some mornings just getting out of bed is a

chore.

> I also have Hashimoto's Thyroiditis, which is why it took so long

to

> diagnose the RA. They just thought it was my low thyroid

manifesting

> all these symptoms. I know you all have probably been through the

> same things and possibly worse, so if you have any suggestions on

how

> to continue to function please let me know. I am really sick of

> feeling badly all the time. Thanks for listening.

> Christie

>

>

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

>

>

[Guest guest]

dont mention it,christie. THATS WHAT IM HERE FOR TO GIVE INSPIRATIONS TO THOSE

WITH RA AND HOW I CAN RECIEVE INPUT JUST AS WELL. this HORRIBLE DISEASE is very

painful and im HAPPY that your son is in remission.... not most of us are that

so called LUCKY! thanks four ENCOURAGING WORDS, i appreciate any kind gestures

or prayers. god bless,melyndagamez 3/30/08 4:33a.m.cst.

[ ] New to the group

>

> Hi everyone,

> I've just joined the group and have already been reading some of

the

> posts. I was diagnosed with RA in December. I was having so much

pain

> I just wanted to cry all the time. It hurt all over! Every joint

and

> even my muscles hurt. The doc started the Methotrexate, first two

> pill a week for a few weeks, then three pills and now we are up to

> four pills a week. It made me have a sore throat and terrible neck

> pain. So he told me to break the dose up. I take two pills at lunch

> on Fridays and then eat lunch, then I do the same at dinner time.

> Eating after taking the pills helps to make the pills go down and

not

> dissolve in my throat, which was causing the neck and throat pain.

I

> also take Folic acid, Naproxen and Tylenol. Anyway, I'm still

having

> a lot of pain and I have Baker's cyst behind my knees which make my

> legs burn. I had to put an eggshell foam pad on my bed to help the

> leg pain. Overall the pain is nothing like it was, at least now I

can

> function most days. But the day after I take the Methotrexate, I

just

> feel like I've been zapped of all my energy and my stomach is

upset.

> I just feel plain terrible for about 24 hours. My husband is very

> sweet and supportive. He had a near fatal stroke about three years

> ago and is disabled. I am his only caregiver. It is very

frustrating

> that I can't always do the things I was accustomed to doing. I work

> full time and I use to be able to do everything on the weekends

like

> clean house, do laundry, mow the yard, etc. He can't do any of

these

> things. Now my housekeeping has really slipped and I'm dreading

> Spring because I know the yard is going to need attention and I'm

not

> sure I can do it. I can barely get the grocery shopping done and

keep

> the dishes washed. Some mornings just getting out of bed is a

chore.

> I also have Hashimoto's Thyroiditis, which is why it took so long

to

> diagnose the RA. They just thought it was my low thyroid

manifesting

> all these symptoms. I know you all have probably been through the

> same things and possibly worse, so if you have any suggestions on

how

> to continue to function please let me know. I am really sick of

> feeling badly all the time. Thanks for listening.

> Christie

>

>

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

>

>

[Guest guest]

Hi Christie, and welcome! I'm also a newcomer here having joined just last

week. I've learned so much already from this wonderful group and it's been

helpful for me just knowing there are others that understand how miserable

(physically and mentally!) I feel some days.

It sounds like you have some real challenges. You've definitely come to the

right place for support and assistance!

Judy

-------------- Original message --------------

From: " Christie " <chris37129@...>

Hi everyone,

I've just joined the group and have already been reading some of the

posts. I was diagnosed with RA in December. I was having so much pain

I just wanted to cry all the time. It hurt all over! Every joint and

even my muscles hurt. The doc started the Methotrexate, first two

pill a week for a few weeks, then three pills and now we are up to

four pills a week. It made me have a sore throat and terrible neck

pain. So he told me to break the dose up. I take two pills at lunch

on Fridays and then eat lunch, then I do the same at dinner time.

Eating after taking the pills helps to make the pills go down and not

dissolve in my throat, which was causing the neck and throat pain. I

also take Folic acid, Naproxen and Tylenol. Anyway, I'm still having

a lot of pain and I have Baker's cyst behind my knees which make my

legs burn. I had to put an eggshell foam pad on my bed to help the

leg pain. Overall the pain is nothing like it was, at least now I can

function most days. But the day after I take the Methotrexate, I just

feel like I've been zapped of all my energy and my stomach is upset.

I just feel plain terrible for about 24 hours. My husband is very

sweet and supportive. He had a near fatal stroke about three years

ago and is disabled. I am his only caregiver. It is very frustrating

that I can't always do the things I was accustomed to doing. I work

full time and I use to be able to do everything on the weekends like

clean house, do laundry, mow the yard, etc. He can't do any of these

things. Now my housekeeping has really slipped and I'm dreading

Spring because I know the yard is going to need attention and I'm not

sure I can do it. I can barely get the grocery shopping done and keep

the dishes washed. Some mornings just getting out of bed is a chore.

I also have Hashimoto's Thyroiditis, which is why it took so long to

diagnose the RA. They just thought it was my low thyroid manifesting

all these symptoms. I know you all have probably been through the

same things and possibly worse, so if you have any suggestions on how

to continue to function please let me know. I am really sick of

feeling badly all the time. Thanks for listening.

Christie.

[Guest guest]

hi christie, i just got your message late last night.i went to san antonio,tx.to

see my ortho. he wants to do a nuclear medicine study to see how bad my bones

are due to my severe osteo.im NERVOUS though cuz im a hard stick!! anyway i pray

that things go well cuz i could REALLY use some good news,not just bad news all

the time.. im SORRY to hear about all ra problems in your family, that stinks!!!

i have an 11yr.old daughter,alyssa & when i found out i was pregnant i thought

she might get it too but PRAISE THE LORD she is as HONORARY as they come.lol i

WOULD not change anything about my life at ALL!!! i HOPE things will get better

for you,soon... god bless,melyndagamez 4/1/08 10:15a.m.central

[ ] New to the group

>

> Hi everyone,

> I've just joined the group and have already been reading some of

the

> posts. I was diagnosed with RA in December. I was having so much

pain

> I just wanted to cry all the time. It hurt all over! Every joint

and

> even my muscles hurt. The doc started the Methotrexate, first two

> pill a week for a few weeks, then three pills and now we are up to

> four pills a week. It made me have a sore throat and terrible neck

> pain. So he told me to break the dose up. I take two pills at lunch

> on Fridays and then eat lunch, then I do the same at dinner time.

> Eating after taking the pills helps to make the pills go down and

not

> dissolve in my throat, which was causing the neck and throat pain.

I

> also take Folic acid, Naproxen and Tylenol. Anyway, I'm still

having

> a lot of pain and I have Baker's cyst behind my knees which make my

> legs burn. I had to put an eggshell foam pad on my bed to help the

> leg pain. Overall the pain is nothing like it was, at least now I

can

> function most days. But the day after I take the Methotrexate, I

just

> feel like I've been zapped of all my energy and my stomach is

upset.

> I just feel plain terrible for about 24 hours. My husband is very

> sweet and supportive. He had a near fatal stroke about three years

> ago and is disabled. I am his only caregiver. It is very

frustrating

> that I can't always do the things I was accustomed to doing. I work

> full time and I use to be able to do everything on the weekends

like

> clean house, do laundry, mow the yard, etc. He can't do any of

these

> things. Now my housekeeping has really slipped and I'm dreading

> Spring because I know the yard is going to need attention and I'm

not

> sure I can do it. I can barely get the grocery shopping done and

keep

> the dishes washed. Some mornings just getting out of bed is a

chore.

> I also have Hashimoto's Thyroiditis, which is why it took so long

to

> diagnose the RA. They just thought it was my low thyroid

manifesting

> all these symptoms. I know you all have probably been through the

> same things and possibly worse, so if you have any suggestions on

how

> to continue to function please let me know. I am really sick of

> feeling badly all the time. Thanks for listening.

> Christie

>

>

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

>

>

[Guest guest]

Tia,

Sounds like your daughter has a combo of brachy and plagiocephaly. If she has facial asymmetry, I would definitely band. I believe there are facilities in Europe that you can go to. I know it would be a lot of traveling but it seems you are willing to do whatever is necessary in order to correct your daughters head. I believe they require a prescription from a doctor but you should be able to find a doctor that will write the script. You could probably make a visit to one of the facilities. They all usually do a free consult. I think that is the first step you need to take. Go get a free consult at one of these facilities and see what they say about the severity of your daughters head. She is at a good age to band. I banded my son at 7.5 months and after 6 weeks I see great improvement. He is about half way done. He has right side

plagiocephaly.

I know there are other people who have banded in another country. One mother is in Korea, I believe so you are not alone. Hopefully others will chime in and help you out.

Cranial Technologies with the DOCband has locations in Spain see link

http://www.cranialtech.com/ClinicLocations/index.html

Orthoamerica with the Starband has locations in England

http://www.ossur.co.uk/technologyinmotion

My son has the DOCband from Cranial Technologies and I've been really happy with them. They are specifically trained just to treat the head so they are experts in that area. Orthoamerica does all different orthotics so I would find out which orthotist/technician has the most experience working with babies heads and the starbands. It is important to find someone who has a lot of experience working with babies heads. I got this tip from many mothers in this group.

Good luck and keep us posted on what you decide.

Sybil

From: storie12 <storie12@...>Subject: New to the groupPlagiocephaly Date: Thursday, May 1, 2008, 2:02 PM

Hello all! I am new to the group and am hoping you can help me. I have looked through some of the posts but to be honest that is very time consuming to find exactly what you are looking for. My daughter is 5 1/2 months old and I have been thinking about having her banded because of her head shape. I have asked the doctor about it twice and he says that when she starts moving around it will get better. I was okay with that in the beginnning but I just worry that it won't get better. Right now, her head is completely flat in the back, and on the right side it is even flatter...if that makes sense. He right cheek is bigger and so is her eye. It is very disturbing to me. I feel so bad for her, ofcourse she has no idea that her head is not round. Has anyone had to do this without the permission of the doctor? Has anyone had to do this while living overseas? I live in Germany now and won't be back to

the states for another three years. Although, I am more than willing to travel back if it means my daughter will get a helmet. Your input is greatly appreciated.TIA,Toni

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Welcome to this supportive, wonderful, knowledgeable group of very caring

helpful individuals. I have RA and FMS, MPS and a myriad of other health

issues. At 36, I sometimes feel 96 On really hard days, I simply don't get

anything done. The past 2 days I've managed to get up and take a hot shower and

crawl back into bed with my pain meds and heating pad. I've had things for

months that I've had to get done, downsizing, spring cleaning, organizing for a

garage sale. I had a few good days last week but somewhat overdid it so am

paying the price now. I make a to do list of my priorities of WHAT must

absolutely get done. I've learned that with illness that the quote " Rome was

not built in a day " really applies to my life! I do not have to do everything in

one day, what I don't or can't get done today can get done at some other time.

I prioritize, take my time getting things done, take lots of rest breaks, and

stop myself before I hurt myself more. I used to berate

myself as I am a perfectionist. Illness has taught me how to modify that

perfectionism that I used to have. I am kinder and more loving to myself and

just do the best I can. Anytime I read articles on ways to cut down on

cleaning, organizing etc, I save them. In one article I read, it stated if you

have more than one floor on your house to clean, to keep a basket of cleaning

supplies on each floor so that you do not have to carry things up and down

stairs. It also suggested for laundry to have one of those rolling totes on

wheels so that folded things could be placed inside and just rolled from room to

room. Welcome to the group you have come to a great place:)

funnybone831 <funnybone831@...> wrote: HI

Everyone:

I am new to the group and wanted to check in and say hi. I was

diagnosed with RA almost 2 years ago. I am dealing with it – but some

days are hard. I was happy to find a group like this where I can meet

others who understand what I am going through. I look forward to

getting to know you all and sharing information.

So – here is my first question……how do you get through the hard days

and still get stuff done?

mg

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

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Thank you for the warm welcome and the great advice. I usually feel

okay – but at times I just want to die. I have three kids and I work

full time. I am thinking about hiring someone to clean every other

week. My husband has been suggesting this for awhile…..but I feel

weird about someone else cleaning my house.

mb

>

> Welcome to this supportive, wonderful, knowledgeable group of very

caring helpful individuals. I have RA and FMS, MPS and a myriad of

other health issues. At 36, I sometimes feel 96 On really hard days,

I simply don't get anything done. The past 2 days I've managed to

get up and take a hot shower and crawl back into bed with my pain

meds and heating pad. I've had things for months that I've had to

get done, downsizing, spring cleaning, organizing for a garage sale.

I had a few good days last week but somewhat overdid it so am paying

the price now. I make a to do list of my priorities of WHAT must

absolutely get done. I've learned that with illness that the

quote " Rome was not built in a day " really applies to my life! I do

not have to do everything in one day, what I don't or can't get done

today can get done at some other time. I prioritize, take my time

getting things done, take lots of rest breaks, and stop myself before

I hurt myself more. I used to berate

> myself as I am a perfectionist. Illness has taught me how to

modify that perfectionism that I used to have. I am kinder and more

loving to myself and just do the best I can. Anytime I read articles

on ways to cut down on cleaning, organizing etc, I save them. In one

article I read, it stated if you have more than one floor on your

house to clean, to keep a basket of cleaning supplies on each floor

so that you do not have to carry things up and down stairs. It also

suggested for laundry to have one of those rolling totes on wheels so

that folded things could be placed inside and just rolled from room

to room. Welcome to the group you have come to a great place:)

[Guest guest]

You are so welcome! The Arthritis Foundation puts out a great magazine with

helpful tips called Arthritis Today. There are a lot of a handy gadgets too

that can help make things a little easier. There is the grabber, a gadget that

can reach and get something off the shelf for us, or reach down to pick up

something we drop so we don't have to bend. I imagine it is very difficult

working and having families. I know there is always more to do. There might be

erognomic devices an Occupational Therapist can help you with at work. I just

have three dogs but somedays even taking care of them is a major chore:) I can

promise you will gain very helpful tips and advice here. I've been on a health

forum for the past 6 years for Fibromyalgia. But this is the one that is so

supportive and always positive that this is the only board I come to now:)

funnybone831 <funnybone831@...> wrote: Thank

you for the warm welcome and the great advice. I usually feel

okay – but at times I just want to die. I have three kids and I work

full time. I am thinking about hiring someone to clean every other

week. My husband has been suggesting this for awhile…..but I feel

weird about someone else cleaning my house.

mb

>

> Welcome to this supportive, wonderful, knowledgeable group of very

caring helpful individuals. I have RA and FMS, MPS and a myriad of

other health issues. At 36, I sometimes feel 96 On really hard days,

I simply don't get anything done. The past 2 days I've managed to

get up and take a hot shower and crawl back into bed with my pain

meds and heating pad. I've had things for months that I've had to

get done, downsizing, spring cleaning, organizing for a garage sale.

I had a few good days last week but somewhat overdid it so am paying

the price now. I make a to do list of my priorities of WHAT must

absolutely get done. I've learned that with illness that the

quote " Rome was not built in a day " really applies to my life! I do

not have to do everything in one day, what I don't or can't get done

today can get done at some other time. I prioritize, take my time

getting things done, take lots of rest breaks, and stop myself before

I hurt myself more. I used to berate

> myself as I am a perfectionist. Illness has taught me how to

modify that perfectionism that I used to have. I am kinder and more

loving to myself and just do the best I can. Anytime I read articles

on ways to cut down on cleaning, organizing etc, I save them. In one

article I read, it stated if you have more than one floor on your

house to clean, to keep a basket of cleaning supplies on each floor

so that you do not have to carry things up and down stairs. It also

suggested for laundry to have one of those rolling totes on wheels so

that folded things could be placed inside and just rolled from room

to room. Welcome to the group you have come to a great place:)

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

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Hi and Welcome!

Nah, don't feel weird about hiring a cleaning lady! It's awesome! I

had a great crew for about 4 years, but we recently moved so I lost

them. Just this past March I was diagnosed with RA and I also have

three kids ages 11, 9, and 2. I agree with a previous poster that you

may start to feel better taking a DMARD. I've taken mine for about six

weeks now and I am noticing a change for the better! Good luck and I

hope you feel better soon.

Jodie

In , " funnybone831 " <funnybone831@...> wrote:

>

> Thank you for the warm welcome and the great advice. I usually feel

> okay – but at times I just want to die. I have three kids and I work

> full time. I am thinking about hiring someone to clean every other

> week. My husband has been suggesting this for awhile…..but I feel

> weird about someone else cleaning my house.

>

> mb

>

>

[Guest guest]

Hi - I'm also new to the group. My 6 month old son just got his DOC

Band today. I voiced my concern for his head shape (to the

pediatrician) when he was three months old and he said he would outgrow

it. He didn't. Apparently, it does clear up in 60% of children, but

we weren't that lucky. After confirming the need with a neurosurgeon,

we went ahead with Cranial Technologies (http://www.cranialtech.com)

and we're optimistic that it will help. They have locations throughout

the US and Spain. My only regret is that I didn't pursue it earlier.

[Guest guest]

Hi there-

I'm glad you're happy with your decision to band. I hope you start

seeing results really soon. Can you tell us where you heard that 60%

of plagio self-corrects? I've never heard a number like that before.

It seems awfully high, considering the number of people on this board,

and those that get banded and aren't even on the board. I guess we

might not hear of all the cases that do self-correct, but from what

I've heard, there have been no studies done to quantify the number

that does. Any information you have on it would be greatly

appreciated. Thanks!

Good luck with the band!

Jake-20m (tort resolved/rt plagio/DOCband 12 weeks)

Jordan-4

>

> Hi - I'm also new to the group. My 6 month old son just got his DOC

> Band today. I voiced my concern for his head shape (to the

> pediatrician) when he was three months old and he said he would

outgrow

> it. He didn't. Apparently, it does clear up in 60% of children,

but

> we weren't that lucky. After confirming the need with a

neurosurgeon,

> we went ahead with Cranial Technologies (http://www.cranialtech.com)

> and we're optimistic that it will help. They have locations

throughout

> the US and Spain. My only regret is that I didn't pursue it earlier.

>

[Guest guest]

Hi ,

Both from my pediatrician and the pediatric neurosurgeon provided those figures to me. He also told me that since the "Back to Sleep" campaign, he sees 5-6 cases per week. My son has torticollis, so repositioning wasn't an option. And maybe I should clarify that my son's head isn't flat - it's mishapen (moderately). However, my friends' daughters, (for the most part) "grew into" their heads. If there is still flattening, you can't tell with the full heads of hair.

Re: New to the group

Hi there-

I'm glad you're happy with your decision to band. I hope you start

seeing results really soon. Can you tell us where you heard that 60%

of plagio self-corrects? I've never heard a number like that before.

It seems awfully high, considering the number of people on this board,

and those that get banded and aren't even on the board. I guess we

might not hear of all the cases that do self-correct, but from what

I've heard, there have been no studies done to quantify the number

that does. Any information you have on it would be greatly

appreciated. Thanks!

Good luck with the band!

Jake-20m (tort resolved/rt plagio/DOCband 12 weeks)

Jordan-4

>

> Hi - I'm also new to the group. My 6 month old son just got his DOC

> Band today. I voiced my concern for his head shape (to the

> pediatrician) when he was three months old and he said he would

outgrow

> it. He didn't. Apparently, it does clear up in 60% of children,

but

> we weren't that lucky. After confirming the need with a

neurosurgeon,

> we went ahead with Cranial Technologies (http://www.cranialtech.com)

> and we're optimistic that it will help. They have locations

throughout

> the US and Spain. My only regret is that I didn't pursue it earlier.

>

Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

[Guest guest]

,

The reason I said I regret not having it sooner is because

1) he would wear it for less time

2) it woudn't be during the summer

The neurosurgeon did tell us that it is the most miserable time for them to wear it - especially because my son sweats profusely. Suggestions from CT to keep him cool was to place an ice pack under a blanket behind them in their carseats and strollers when their out and about AND no socks while in the house. I hope I can get through this.

Re: New to the group

Hi There...My son is 6.5 months and we pick up his starband next week.

I also brought up his flattening head to my pediatrician at 3 mo, 4 mo

& then 6 mos...before returning and simply asking for the name of a

specialist. I felt like he sort of brushed me off at each visit... he

just said 'oh that's nothing, I've seen kids with heads that are as

flat as a box of tissues. He told me to just roll up a towel and

place it on the side he's prone to favor (something the specialist

rolled his eyes at). The specialist agreed that older doctors aren't

as agressive to treat as maybe docs more recently emergency from med

school. My ped is s Hopkins trained...obviously a bright guy but

close to retirement.

In hindsight, I'm a little angry that he didn't send us sooner so that

potentially we could have started treatment sooner and so that we

wouldn't be banded in the 3 hottest months of the year.

My son has brachycephaly & absolutely needs one. My advice to anyone

on the fence is...sooner than later...it won't fix itself.

>

> Hi - I'm also new to the group. My 6 month old son just got his DOC

> Band today. I voiced my concern for his head shape (to the

> pediatrician) when he was three months old and he said he would outgrow

> it. He didn't. Apparently, it does clear up in 60% of children, but

> we weren't that lucky. After confirming the need with a neurosurgeon,

> we went ahead with Cranial Technologies (http://www.cranialtech.com)

> and we're optimistic that it will help. They have locations throughout

> the US and Spain. My only regret is that I didn't pursue it earlier.

>

Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

[Guest guest]

hi mg WELCOME I HOPE YOU ENJOY THE RA GROUP.. im 38 & have had ra since i was 5.

i guess you can say that i have made it through this difficult diasese with the

HELP & LOVE FROM MY FAMILY & FRIENDS!!!! its not easy,however there is always

someone else WORSE off than we are. so give thanks & be happy for what you can

do!! i pray & give thanks every single day to our lord jesus!! god bless,melynda

gamez 5/9/08 11p.m.central time

[ ] New to the group

HI Everyone:

I am new to the group and wanted to check in and say hi. I was

diagnosed with RA almost 2 years ago.. I am dealing with it – but some

days are hard. I was happy to find a group like this where I can meet

others who understand what I am going through. I look forward to

getting to know you all and sharing information.

So – here is my first question……how do you get through the hard days

and still get stuff done?

mg

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

[Guest guest]

Hi ,

Welcoem to the group. I am not sure what Quackary you are refering to but

you have found a great group of caring compassionate people who all have

different views on issues and it still doesn't matter, we are here to share

experiences of living with RA. From time to time we all vent but as with any

of us with RA, we deserve it I thiok (LOL)Again welcome to the group.

Heidi M

On Fri, Jun 13, 2008 at 4:17 AM, <gocatholic@...> wrote:

> Hi, all.

>

> I just joined the group and thought I would introduce myself.

>

> I am forty years old, divorced and a mom of four. My kids are 7, 9,

> 11 and 15. I have been diagnosed with five chronic illnesses

> including RA. I am currently having a very bad flare-up.

>

> I use a service dog and I do take prescription medication for some

> things. I have ulcer disease that prevents my taking most things

> generally prescribed for RA.

>

> I am concerned about preventing joint damage, how much exercise I

> should have, how to cope with pain, etc.

>

> I follow the view of the mainstream medical community on " quackery "

> however I try to avoid this topic since so many people don't agree

> with that. I trust my rheumatologist. I trust my psychiatrist. I

> trust the Mayo Clinic and the AMA, the AAFP, the NIH, etc., for the

> most part. I recognize the reasons why new drug therapies are based

> on clinical trials rather than consumer testimonials.

>

> I moderate an online support group for 140+ Catholics with mental

> illness. If you are a traditional Catholic, send me an email and

> we'll talk about Faith-related things if you like.

>

> I live in Kentucky. I am able to care for my kids but am unable to

> live independently. We live with my mom who is elderly and has some

> mobility issues herself.

>

> I'm glad to find this group.

>

>

>

>

>

[Guest guest]

Thanks for the welcome, Heidi. I really appreciate it.

If you will just google " quackery " there is a lot of information about it.

Here is a page that shows where you can report it if you have been

" quacked " .

http://your-doctor.com/patient_info/alternative_remedies/various_therapy/reportf\

raud.html

At the bottom of the page is a link to Quackwatch which can tell you

more about quackery, as well.

I will definitely steer clear of saying that " this " or " that "

treatment is quackery. As I think I noted, I moderate a support group

for mentally ill Catholics. One of my rules on the group is that we

will not criticize each other regarding treatment options. It never

fails, though. There's always someone out there who won't have it any

other way but their way no matter what you say.

Science has proven that not every human body reacts the same way to

this or that treatment so there is no reason why we can't all accept

that and not fight with each other. I have been told by a couple of

people that I am completely irresponsible because I have rejected

" cures " because after investigation I decided not to try them.

I am very disturbed by people who think they have found the cure for

my chronic illnesses and, when I tell them it's my private business

why I have chosen not to try that particular treatment, they persist

and persist and persist. It happens.

I am really just very hopeful that I will not find any of that sort of

behavior in this group. I will probably not even discuss treatment

options. I'm mostly interested in listening to how people cope with pain.

Thanks for listening and for your warm welcome.

>

> > Hi, all.

> >

> > I just joined the group and thought I would introduce myself.

> >

> > I am forty years old, divorced and a mom of four. My kids are 7, 9,

> > 11 and 15. I have been diagnosed with five chronic illnesses

> > including RA. I am currently having a very bad flare-up.

> >

> > I use a service dog and I do take prescription medication for some

> > things. I have ulcer disease that prevents my taking most things

> > generally prescribed for RA.

> >

> > I am concerned about preventing joint damage, how much exercise I

> > should have, how to cope with pain, etc.

> >

> > I follow the view of the mainstream medical community on " quackery "

> > however I try to avoid this topic since so many people don't agree

> > with that. I trust my rheumatologist. I trust my psychiatrist. I

> > trust the Mayo Clinic and the AMA, the AAFP, the NIH, etc., for the

> > most part. I recognize the reasons why new drug therapies are based

> > on clinical trials rather than consumer testimonials.

> >

> > I moderate an online support group for 140+ Catholics with mental

> > illness. If you are a traditional Catholic, send me an email and

> > we'll talk about Faith-related things if you like.

> >

> > I live in Kentucky. I am able to care for my kids but am unable to

> > live independently. We live with my mom who is elderly and has some

> > mobility issues herself.

> >

> > I'm glad to find this group.

> >

> >

> >

> >

> >

>

>

>

[Guest guest]

Welcome to the group. I am sorry to hear about your situation at the

moment. I have not walked in your shoes but I do believe things will

get better.

This is how I try to live. As the old saying goes, we take lemons

and make lemonade. I remember being overwhelmed and thinking life

would never be the same. It is different but by no means the end.

I hope that new doors will open for you soon. I know sometimes pain

gets in the way and you have to take your down time. Try to enjoy

your daughter and husband every moment possible.

I think you will enjoy this group. They are supportive and a great

source of information.

Shirley

--- In , " rosemader7 " <rosemader7@...>

wrote:

>

> Hello everyone, my name is Karla and I was diagnosed with RA in

> February. I am 38 (going on 39) and I am happly married and have

a

> beautiful 10 month old daughter. I am currently taking

Sulfalazine,

> Enbrel and will be starting Palquenil. Here is my question to the

> group, how have you dealt with the depression? I unfortunatly

lost my

> job (due to work force reduction) the day after my diagnosis. So,

I

> have been trying to deal with the diagnosis of RA, the depressing

fact

> that I had to stop breastfeeding my daughter to start my meds, the

loss

> of a job I had for 13 years, and the fact that Michigan does have

any

> jobs for me. Any uplifting words would be greatly appreciated.

Thanks

> for your time.

>

[Guest guest]

Wow, you've had a lot to deal with. I loved breast feeding my daughter and that

would have been hard to give up.

I expect you're still grieving all these losses and it will take time. If you

like to read, picking up something at the bookstore or on-line on the grief

process might help. That has helped me. Counseling has been helpful to me, also,

though it wasn't  for RA.

Get plenty of rest, you'll need it with a small child.

I'm from Michigan, too. It's in such a funk right now;  I hope it will start to

turn around  soon.

ez

[Guest guest]

Hi Karla

Welcome to the group. I think that depression just goes along with most

chronic pain diagnosis. The main thing that you need to do is remember that

although you are in pain, you still a beautiful baby and a home life. When I

get so far down I always come here, get lots of support from the group and

also some laughs.This disease can pull the life right out of you if you let

it. Now I am no means a perky person or someone who is chronically happy but

I have learned that sitting by myself and doing nothing always seem to let

the dark cloud form. If you can, find a hobby that you can do at the times

the baby is asleep or when she is playing. I am trying to learn how to

scrapbook and I knit when I have the hand strength to do so or when my hands

wi9ll allow it.

I hope that you will be able to get on a med regime that will help the

fatigue and pain,I know that there are members who are doing really well.

Also remember you are not alone, we are here to listen and help if possible.

Heidi M

On Sat, Jul 19, 2008 at 8:35 AM, Elaine Zurofsky <mezuro@...> wrote:

> Wow, you've had a lot to deal with. I loved breast feeding my daughter

> and that would have been hard to give up.

>

> I expect you're still grieving all these losses and it will take time. If

> you like to read, picking up something at the bookstore or on-line on the

> grief process might help. That has helped me. Counseling has been helpful to

> me, also, though it wasn't for RA.

>

> Get plenty of rest, you'll need it with a small child.

>

> I'm from Michigan, too. It's in such a funk right now; I hope it will

> start to turn around soon.

>

> ez

>

>

[Guest guest]

I actually have asked many of the docs I have seen. Some gave me the same

response is that they are coming up with new meds. Then I had another doc

that his response is that we tweak the cocktail...rotate the meds.

I have been on just about all the meds with the exception of the IV meds. I

declined taking those because I have horrible Venous access....I would have

to have a line or port implanted for that. I am NOT doing that.

I have a daughter that has a blood disorder that has just about exhausted

all of her venous access and will have to have a port placed sometime in the

very near future. In her case with the rest of infection...ports are reserved

the sickest of the sick. She goes to hematology/oncology infusion clinic and

treatment center in our local medical center. I am a former paramedic so I

too am all too familiar with the risk.

But I have been on ALL the injectables except for kineret. I decline that

after Humira burned like acid...I was told that kineret would be like a daily

dose of Humira.

I think it a matter of how bad your disease is...and how far you will go and

how much you can tolerate when balancing disease and side effects from the

treatment.

Toni

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)