New to group...

[Guest guest]

Welcome to the group Lynette. First and most important this is not your fault! I felt that way at first also. This group gave me the support and encouragement to know this wasn't my fault. We also found out at my daughter Jenna's 6 month appointment. It took us almost 3 months to get her into the specialist. She was STARbanded at 9 months and received 80% correction in 12 weeks. Her head has rounded since graduation also.

Please know you are not in this alone. We are all hear to help you. Did your Dr. refer you to a specialist or write a prescription for a band? There is great information in the files to help with insurance issues. We have had many people in the group get their insurance to pay.

I'm sure others in your area will chime in with referrals to great orthotists.

Whatever you decide to do, the group will stand by you.

Again welcome to the group!

Angie and Jenna(STAR grad and front page start for a few more days)

....

Hi,This morning, at my daughter's 6 month appointment, we were told that we should consider getting a band for her. We knew her head had some flattening, but were told that it would probably correct itself. I guess not...My reason for joining this group is that right now I feel alone. while my head tells me it's not my fault, my heart is full of blame and hurt. I'm still trying to process everything and what the next months will entail emotionally, physically and financially.I don't know anyone in a similar position and I hope to find comfort in hearing about other people's situations.Thanks,Lynette in Charlotte, NCmother of Brenna (6-month) and Caelan (2 years)For more plagio info

[Guest guest]

Hi Lynette:

Welcome to the group. I understand how you feel. You will do just

great...just follow what you think is best for your child. It sounds

like you have a great pediatrician who prompted you to act upon

early...she will get great results if banded. My son is 5 1/2 months

and started his band just 2 days ago...and remarkably doing

well...I'm the one who has to adjust to it...how funny mother's tend

to take on the feelings for their child...we want to do everything

for them. This is a wonderful group of gals and spoonagle...who will

guide you to making the decision much easier. We will give you

support and a shoulder to cry on. Good Luck.

Lori and on 6/23/03 docband

TX

--- In Plagiocephaly , " Lynette Cook " <cookie@c...>

wrote:

> Hi,

>

> This morning, at my daughter's 6 month appointment, we were told

that

> we should consider getting a band for her. We knew her head had

some

> flattening, but were told that it would probably correct itself. I

> guess not...

>

> My reason for joining this group is that right now I feel alone.

> while my head tells me it's not my fault, my heart is full of blame

> and hurt. I'm still trying to process everything and what the next

> months will entail emotionally, physically and financially.

>

> I don't know anyone in a similar position and I hope to find

comfort

> in hearing about other people's situations.

>

> Thanks,

> Lynette in Charlotte, NC

> mother of Brenna (6-month) and Caelan (2 years)

[Guest guest]

Hi Lynnette - My name is Donna and I too am new to this group. I have

a 3 month old little boy who has a flat spot and we are in the

process of trying to reposition and are probably going to be getting

him banded soon. I know how you feel I too flet like it was my fault

but after researching the topic I am stating to come to terms with

it. This is a great group and full of tons of advice and support. Did

your ped refer you somewhere to have Brenna checked out?>

Donna AZ

Momma to Xavier

--- In Plagiocephaly , " Lynette Cook " <cookie@c...>

wrote:

> Hi,

>

> This morning, at my daughter's 6 month appointment, we were told

that

> we should consider getting a band for her. We knew her head had

some

> flattening, but were told that it would probably correct itself. I

> guess not...

>

> My reason for joining this group is that right now I feel alone.

> while my head tells me it's not my fault, my heart is full of blame

> and hurt. I'm still trying to process everything and what the next

> months will entail emotionally, physically and financially.

>

> I don't know anyone in a similar position and I hope to find

comfort

> in hearing about other people's situations.

>

> Thanks,

> Lynette in Charlotte, NC

> mother of Brenna (6-month) and Caelan (2 years)

[Guest guest]

Hi Lynette & welcome to our group!!

Please please please don't blame yourself for this!! For some unknown reason, plagio happens to some babies but not all. There's no reason to feel guilty for this.

A helmet or a band is not bad at all!! I too had similar concerns as you when I learned my duaghter needed a band. I was like "nooo way will I put her in a helmet!" but I did & it's the best thing we've ever done for her.

You'll be extremely relieved to know most babies don't mind their bands for one second!!! I've been w/this group 2.5 yrs now and have only heard of a couple babies who didn't tolerate their helmet, that's out of many many many members!!

I'm happy to see you live in Charlotte, NC!! Did your Dr refer to you Cranial Technologies for an eval? They make the DOCband and are truly wonderful. They offer free evals and they'll give you their honest opinion. www.cranialtech.com for more info. Their Charlotte address is 1928 Randolph Rd Charlotte, NC 07652 866-265-7730 or local 704-344-1290

I'm very happy you found our group. As you can see, you're definitely not alone with all this!!

Have you looked into insurance coverage of a band? What ins. do you have?Welcome again!! Keep us posted.

Debbie Abbys mom DOCGrad MILynette Cook <cookie@...> wrote:

Hi,This morning, at my daughter's 6 month appointment, we were told that we should consider getting a band for her. We knew her head had some flattening, but were told that it would probably correct itself. I guess not...My reason for joining this group is that right now I feel alone. while my head tells me it's not my fault, my heart is full of blame and hurt. I'm still trying to process everything and what the next months will entail emotionally, physically and financially.I don't know anyone in a similar position and I hope to find comfort in hearing about other people's situations.Thanks,Lynette in Charlotte, NCmother of Brenna (6-month) and Caelan (2 years)

[Guest guest]

Hi and welcome to the group.

I think many of us here if not all of us can understand what you are

going through. For each one of us is hard to see that our children

have plagio and many of us still wonder whether there was something

we could have done to prevent it. In my cse no one told me to put my

son to sleep on his sides and I was so out of it for the first few

months that it took me a while to see the funny shape of his head.

The important thing now is for you to not look back and just focus on

your daughter's treatment. You will see that with time the guilt and

hurt you have will quickly turn into happiness when you start seeing

her little head round with the treatment. The hardest phase is the

one you are going through right now trying to decide on the band,

trying to sort your feelings, and trying to see what the band may

mean financially to your family.

One thing is for sure, if you decide to band your daughter, she can

get great correction. It will be harder on you than on her. She

will adjust to it in no time and it will help her avoid many bumps as

she start to crawl and pull herself up. I know my son has avoided

quite a few bruises b/c of the band.

Keep us posted on your decision and welcome again to the group.

Carolina (mommy to Mateo, 8 1/2 months, banded 4/10, going for a

second band soon)

--- In Plagiocephaly , " Lynette Cook " <cookie@c...>

wrote:

> Hi,

>

> This morning, at my daughter's 6 month appointment, we were told

that

> we should consider getting a band for her. We knew her head had

some

> flattening, but were told that it would probably correct itself. I

> guess not...

>

> My reason for joining this group is that right now I feel alone.

> while my head tells me it's not my fault, my heart is full of blame

> and hurt. I'm still trying to process everything and what the next

> months will entail emotionally, physically and financially.

>

> I don't know anyone in a similar position and I hope to find

comfort

> in hearing about other people's situations.

>

> Thanks,

> Lynette in Charlotte, NC

> mother of Brenna (6-month) and Caelan (2 years)

[Guest guest]

Hi Lynette,

Welcome to the group. This in no way is your fault! How could you

have prevented a condition, you didn't even know existed??

We have all felt the guilt you are feeling, it does get better

though, it just takes some time. The good news is, your baby is still

young enough to achieve excellent correction from banding.

Have you gone to Cranial Tech for a free evaluation? There is one in

Charlotte!! Here is the info and please keep us post on your little

cutie!

Cranial Technologies, Inc.

1928 Randolph Road, Suite 312

Charlotte, N.C. 28207

Phone: 704-344-1290

Toll Free: 866-344-1290

Fax: 704-344-1292

Clinician:Michele Hurni, OTR

Clinician: Klemm, MS OTR/L

Clinician: Hendricks, LPT

--- In Plagiocephaly , " Lynette Cook " <cookie@c...>

wrote:

> Hi,

>

> This morning, at my daughter's 6 month appointment, we were told

that

> we should consider getting a band for her. We knew her head had

some

> flattening, but were told that it would probably correct itself. I

> guess not...

>

> My reason for joining this group is that right now I feel alone.

> while my head tells me it's not my fault, my heart is full of blame

> and hurt. I'm still trying to process everything and what the next

> months will entail emotionally, physically and financially.

>

> I don't know anyone in a similar position and I hope to find

comfort

> in hearing about other people's situations.

>

> Thanks,

> Lynette in Charlotte, NC

> mother of Brenna (6-month) and Caelan (2 years)

[Guest guest]

Lynette -

Although I see you have already received many replies, I decided I

had to write as well. I remember my first post in this group and

how much better I felt with every email I read...the support is

something you can never received enough of! So - here is my two

cents (or maybe more) ...

I was in a very similar position - we were also referred for banding

at our 6 mos. well-child visit. I was devastated! I remember the

immense guilt - even though everyone told me it wasn't my fault. I

remember the sorrow I felt when thinking it would be terrible to see

my beautiful baby wearing this horribly medical looking contraption

on his head. I remember the shame I anticipated I would feel when I

took him out in public. I remember grieving the fact that my baby

was no longer " perfect " - there was now something 'wrong' with him.

I cried and cried and beat myself up over and over again. I was sad

that his baby album would now be 'different' than other babies. I

worried about what the financial cost would be and how it would

impact our lives.

The reason that I am sharing these feelings is because you need to

know how normal your feelings are!!!!

My little boy, , received his band on April 29th when he was

6 1/2 months old. He has done remarkably and is getting rounder by

the minute (pictures in the photo area under C.). I can

tell you that even though I remember all of those feelings - I was

able to work through them. They still resurface from time to time -

but the whole process is soooo much easier than I felt it would be.

The bottom line for me was that this was treatable and we were doing

every thing we could to make his head rounder!!!

For me, the guilt I felt over believing that this was my fault was

the hardest. No matter what I read in this group and no matter what

EVERYONE told me, I could not stop feeling guilty. Finally - my

husband suggested that if I could not stop blaming myself, perhaps I

could find a way to FORGIVE myself instead. That really worked for

me. I still feel guilty from time to time - but I do think I have

forgiven myself and that has really helped!

And - the band was not as horribly ugly as I thought - stickers

helped. My son is still beautiful - he just has a crooked noggin (I

thought that sounded so much nicer than flat head!!!). I still have

many " normal " baby pictures in his album - along with many banded

photos. And we have all survived this process and have never

regretted, not for one minute, that we decided to band him!!!!!

Good luck to you and your little one! We're here for you!

Debbie ( C's mom - DOCbanded 4-29-03 at 6 1/2 mos)

--- In Plagiocephaly , " Lynette Cook " <cookie@c...>

wrote:

> Hi,

>

> This morning, at my daughter's 6 month appointment, we were told

that

> we should consider getting a band for her. We knew her head had

some

> flattening, but were told that it would probably correct itself. I

> guess not...

>

> My reason for joining this group is that right now I feel alone.

> while my head tells me it's not my fault, my heart is full of

blame

> and hurt. I'm still trying to process everything and what the next

> months will entail emotionally, physically and financially.

>

> I don't know anyone in a similar position and I hope to find

comfort

> in hearing about other people's situations.

>

> Thanks,

> Lynette in Charlotte, NC

> mother of Brenna (6-month) and Caelan (2 years)

[Guest guest]

Hi Lynette,

I see you already got lots of great responses, so I just want to say

welcome! Brenna is still on the younger side so you should get some

great results. I have a six month old too (DOB 12/23) and she's

been banded for 6 weeks for severe plagio and we're very happy with

the results. Good luck!

, mom to Hannah DOCbanded 5/12

Cape Cod, Ma

--- In Plagiocephaly , " Lynette Cook " <cookie@c...>

wrote:

> Hi,

>

> This morning, at my daughter's 6 month appointment, we were told

that

> we should consider getting a band for her. We knew her head had

some

> flattening, but were told that it would probably correct itself. I

> guess not...

>

> My reason for joining this group is that right now I feel alone.

> while my head tells me it's not my fault, my heart is full of

blame

> and hurt. I'm still trying to process everything and what the next

> months will entail emotionally, physically and financially.

>

> I don't know anyone in a similar position and I hope to find

comfort

> in hearing about other people's situations.

>

> Thanks,

> Lynette in Charlotte, NC

> mother of Brenna (6-month) and Caelan (2 years)

[Guest guest]

Hi Lynette! Please don't feel guilty! I was there, though! I cried for a few days and felt so awful that I let this happen to my precious baby. But then I finally made peace with myself, knowing that I did the best I could have. I just didn;t know to turn his head different ways to avoid the flattening. He slept pretty much all the time for the fist six weeks or so, so no wonder how it happened! And I also thanked God that plagio was all that was wrong with him... not serious at all really. It seemed to take a few days, but then I finally let go of the guilt. Just know that you are doing everything you can nw for your sweet baby to get it corrected. Getting Kurt's helmet was the best thing we have done as parents. His head looks great after only one short month. He is not bothered one bit by the helmet, and honestly I think he looks quite cute in it! You guys will be just fine. Just try to focus

on the positive, even though at times that may be difficult. Good luck to you.

Kim

mom to Kurt (STARbanded 5/8/03)Lynette Cook <cookie@...> wrote:

Hi,This morning, at my daughter's 6 month appointment, we were told that we should consider getting a band for her. We knew her head had some flattening, but were told that it would probably correct itself. I guess not...My reason for joining this group is that right now I feel alone. while my head tells me it's not my fault, my heart is full of blame and hurt. I'm still trying to process everything and what the next months will entail emotionally, physically and financially.I don't know anyone in a similar position and I hope to find comfort in hearing about other people's situations.Thanks,Lynette in Charlotte, NCmother of Brenna (6-month) and Caelan (2 years)For more plagio info

[Guest guest]

Lynette,

I just wanted to welcome you to the group! I know you have gotten a ton of wonderful replies, so I just wanted to let you know that we have all been there, in there, or going there in this process, so you are definetly NOT alone! Continue to read posts, educate yourself, and you'll realize how treatable this is and you will not feel as bad as when you first get the news. Hang in there!

HUGS!

' mom

[Guest guest]

Hi everyone! I've read a little & am really glad I found this group!

I was diagnosed with MS in 1996, RA in 2004. The RA gives me a run

for my money! I'm SO tired all the time and my whole body

hurts...like I'm sure you all experience.

I began using marijuana (illegally - it's not 'allowed' in Indiana)

approximately 2 months ago...the pain was too much & they don't make

a pain medication that helps. I have found great relief in smoking!

I don't use it daily...only once or twice a month...usually when it

gets to the point where I want someone to shoot me - seriously.

Ironically, I do not suffer much from the MS...I will occasionally

get the 'dropsies' & have short-term memory issues. I think my

numbness, which extends from my left leg toes up through a portion

of my lower back, might actually be caused from the RA. Does anyone

else have this numbness? Drives me insane!! I also have a 'lump' in

my left foot...that's how it started. It's a large lump & sometimes

it's really painful & always feels 'strange' in my shoe.

I am not currently on any medications - for either illness. I think

I'm probably going to have to look into starting some preventative

med's for the RA...I can't imagine trying to work right now, but I

can't NOT work either. What does everyone know about the med's, etc.

& how have they affected you? I pop Excedrin Tension Headache pills

like candy...the arthritis is bad in my neck & I have

headaches/migraines literally every day.

What about SSI/SSDI? I'm mostly functional with 'bouts' of flare-up.

I don't know if I would even qualify for this...but I would

definitely be interested in checking it out. This particular 'bout'

has been with me for over 3 months...it starts to get better for a

few days, then comes back full force. I'm not sure what they base

who qualifies and who doesn't on. I've lost two jobs in the past

year because of RA...missed work, etc. I'm not a 'job hopper' so

this has been really rough for me to accept.

Anyway, that's my story. Any input would be appreciated! I look

forward to meeting everyone.

Thanks!

Cami

[Guest guest]

Welcome Cami!

its a great group with a TON of really good info and a lot of caring. I

think you will like it here.

Jill

On 11/20/05, Cami DeFries <gsplovers@...> wrote:

>

> Hi everyone! I've read a little & am really glad I found this group!

>

> I was diagnosed with MS in 1996, RA in 2004. The RA gives me a run

> for my money! I'm SO tired all the time and my whole body

> hurts...like I'm sure you all experience.

>

> I began using marijuana (illegally - it's not 'allowed' in Indiana)

> approximately 2 months ago...the pain was too much & they don't make

> a pain medication that helps. I have found great relief in smoking!

> I don't use it daily...only once or twice a month...usually when it

> gets to the point where I want someone to shoot me - seriously.

>

> Ironically, I do not suffer much from the MS...I will occasionally

> get the 'dropsies' & have short-term memory issues. I think my

> numbness, which extends from my left leg toes up through a portion

> of my lower back, might actually be caused from the RA. Does anyone

> else have this numbness? Drives me insane!! I also have a 'lump' in

> my left foot...that's how it started. It's a large lump & sometimes

> it's really painful & always feels 'strange' in my shoe.

>

> I am not currently on any medications - for either illness. I think

> I'm probably going to have to look into starting some preventative

> med's for the RA...I can't imagine trying to work right now, but I

> can't NOT work either. What does everyone know about the med's, etc.

> & how have they affected you? I pop Excedrin Tension Headache pills

> like candy...the arthritis is bad in my neck & I have

> headaches/migraines literally every day.

>

> What about SSI/SSDI? I'm mostly functional with 'bouts' of flare-up.

> I don't know if I would even qualify for this...but I would

> definitely be interested in checking it out. This particular 'bout'

> has been with me for over 3 months...it starts to get better for a

> few days, then comes back full force. I'm not sure what they base

> who qualifies and who doesn't on. I've lost two jobs in the past

> year because of RA...missed work, etc. I'm not a 'job hopper' so

> this has been really rough for me to accept.

>

> Anyway, that's my story. Any input would be appreciated! I look

> forward to meeting everyone.

>

> Thanks!

> Cami

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

Welcome to the group.I have the same symptoms you have and have been

diagnosed, My RA was not positive in the blood test but they foud it on an

MRI. I was started on Metotrexate and the Rhymmy added Embreel. I think they

have both worked to help with some of the symptoms.Be sure and talk to your

MD about it so that he can get you tarted on some meds to help the pain and

defomities RA can cause.

Heidi M

On 11/15/07, lhines1970 <avonrep25@...> wrote:

>

> Hi! I am new to this group-I have not been officially dx w/RA but I

> have a strong suspicion I may have it. My hands are often, like right

> now, red and tight. The first and second finger knuckles on both hands,

> where the fingers attach to the palm, are often large and appear

> swollen, but no pain. I also get cramps deep in my palms sometimes,

> when I'm writing or using my whole hand for something. I also have

> painful joints in my big and little toes on both feet, and I often get

> a case of the " hot foot " !

>

> I'm not really sure if this sounds like RA, but I'm curious of other's

> opinions who have it. I already have Myasthenia Gravis that I blieve

> has progressed from Ocular to generalized due to upper arm and leg

> weakness I've been having for abt a year now, so I'm going back to a

> Neurologist Friday to get evaluated. Maybe I'll ask him what he thinks!

>

> I look foreward to talking to all of you soon!

>

> Hines

>

>

>