New to Group

July 13, 2006

Carole, I will pray you get those things out ASAP. Your story is horrific, with one trying to make it's way out. Stay here with us and keep us posted on how you are doing. We care about you! Prayerfully, Carole <carole293@...> wrote: I just found this group. I have had saline implants for 11 years. I had them put in by the military PS @ wilford hall in SATX. I had such trouble with the left side, it took 6

months of motrin and 5 ulcers for them to get my pain under control. I couldn't lift the left arm for ages and never got complete rotation back. The left implant got hard and sat a bit higher than the right. I nevertheless enjoyed the implants for about 9 years. About 2 years ago I had a greenish yellow dischage from the left nipple then it came out bloody. I had a biopsy, mamo and sono. and 2 ductectomys I was diagnosed with cancer then told it was displaysia. After the ductectomys my nipple looked wierd but I was okay with that, but a couple of months later the implant started to come through the nipple a bit and felt strange and made the nipple tender. I tried to get the implants out through the military during the cancer scare, but since it wasn't cancer and all the PS were deployed to Iraq they wouldn't do it. Last friday, the right breast, which has always been my "good" one deflated. Great. Actually

I was not too freaked about it, it feels kind of neat, all soft and squishy like a real booby (well execpt you can feel a bit of the implant shell in places) I now how 2 different sides. I am working at getting them to send me back to SATX to get the implants out. There is a slight chance that they may do it as I had the implants put in there. I would like prayers that this will happen. I may have the option to get a lift too. I would like that, but am more than anxious to just get the implants out. Thanks for letting me vent. I have been very tired and lazy since the implant deflated, do you think there is a conection?

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July 13, 2006

Hi, we're a mix of both, I believe. Many of us had saline, but there

are a few silicone survivors as well.

Sis

>

> Hi!

>

> Is this group mostly women that had silicon implants

> and had them removed, or is this group saline impant

> women with problems?

>

> Thanks!

>

> PT

>

> __________________________________________________

>

July 13, 2006

Hi Elaine,

Welcome to the group! Your story sounds very similar to mine. So

frustrating! How long has she had her helmet? Is she adjusting

well to it?

Natasha

Mommy to Aidan, DOCGrad

Atlanta

>

> Hi everyone. I am new to this group. I wish I would have found

> this group months ago. My daughter just turned 9 months old

> yesterday. She received her cranial molding helmet on 4/12/06.

It

> has been a battle since the day she was born. When I first

started

> breastfeeding her, I noticed she fed a lot better on one side than

> the other. It seemed she really did not like to turn her head to

> the left. I brought it up to my pediatrician on several

occassions

> and she said it would work itself out. I am involved with the

> Parents as Teachers program. During one of my visits with our

> parent educator, she was concerned that my 3 month old daughter

was

> only tracking 90 degrees. She said that she should be tracking

180

> degrees. I immediately called my pediatrician who then FINALLY

told

> me to start doing some neck exercises with her. Wow - within days

> she was able to track 180 degrees. I was furious that she did not

> mention these exercises to me prior to this!!! It was too late

> though, she had a pretty bad flat spot on the side of her head.

> During my daughter's 4 month visit, I brought up the flat spot and

> was told by my pediatrician that " it would work itself out " . I

said

> that wasn't a good enough answer so she sent us to the hospital to

> get x-rays. Those came back fine and that was that. I called her

> back and said that there had to be something more I could do to

help

> this flat spot. That is when she finally referred me to a plastic

> surgeon. This is my first baby and I had never heard of

torticollis

> (which she was never officially dx with) or plagiocephaly. It is

> drilled in our heads that we must put our babies to sleep on their

> backs but no one ever mentions to make sure you reposition them.

> There needs to be more awareness. All of this is preventable. It

> makes me sick to my stomach to think about it. Anyway, we got her

> helmet at Precision Prosthetics and Orthotics in St. Louis.

Thanks

> for listening - it feels good to get it all out.

>

> Elaine (mom to Sophie - 9 months)

>

July 13, 2006

My husband is still active duty, 22 years. No I do not have other

coverage. It would cost $6200 to get them out here. I cannot pay that

on a one person income family. Seems many women are in this condition.

My only option is to have the military do it. I will talk to the

surgeon and see what they do, I definately want the en bloc (capsule

out) kind. My appt is tomm. at 8:15 to see if they will refer me for

the surgery. I am praying for God's favor, Thanks for caring, Carole

> >

>

July 13, 2006

Welcome Elaine! What a wonderful mommy you are to be so persistent and getting what your daughter needed!! WTG!

I needed the help, knowledge and encouragement from these wonderful moms to get my dd help!

Jen

Mommy to 4...and 1 more!!!!

VOTE FOR LULI- www.evenflo.com

Baby Youre a Star

PHOTO #4842

"Luli"

www.babiesonline.com/babies/j/jens5th/

July 13, 2006

Carole,If you need do convince the doctor, there is some info on the importance of removing capsules written by Dr. Feng and Blais . . . I'll see if I can find it and send it to you.Hugs and prayers,RogeneCarole <carole293@...> wrote: My husband is still active duty, 22 years. No I do not have other coverage. It would cost $6200 to get them out here. I cannot pay that on a one person income family. Seems many women are in this condition. My only option is to have the military do it. I will talk to the

surgeon and see what they do, I definately want the en bloc (capsule out) kind. My appt is tomm. at 8:15 to see if they will refer me for the surgery. I am praying for God's favor, Thanks for caring, Carole > > >

July 13, 2006

Hi Elaine,

Welcome! I so agree with you! There does need to more awareness. I am actually going to contact my former child prep class teacher. All parents to be need to be educated about the side effects of the back to sleep campaign and ways to prevent them. I am a first time mom, like you and if I would have only known...Not one book or magazine mentioned it, and I read quite a few. Not one class either, and I took several. I have already started telling all my pregnant friends and my pregnant sister.

But most importantly is that pediatricians get educated on this topic. Instead of blowing people off they should see the importance of early intervention (start with repo, PT, follow up regularly and refer to orthotist).

How is your daughter responding to the treatment? Are you seeing improvements?

Take care,

Caitlin 4.5 months (plagio, brachy, tort)

San Diego

On 7/13/06, coleman0711 <coleman0711@...> wrote:

Hi everyone. I am new to this group. I wish I would have found this group months ago. My daughter just turned 9 months old yesterday. She received her cranial molding helmet on 4/12/06. It has been a battle since the day she was born. When I first started breastfeeding her, I noticed she fed a lot better on one side than the other. It seemed she really did not like to turn her head to the left. I brought it up to my pediatrician on several occassions and she said it would work itself out. I am involved with the Parents as Teachers program. During one of my visits with our parent educator, she was concerned that my 3 month old daughter was only tracking 90 degrees. She said that she should be tracking 180 degrees. I immediately called my pediatrician who then FINALLY told me to start doing some neck exercises with her. Wow - within days she was able to track 180 degrees. I was furious that she did not mention these exercises to me prior to this!!! It was too late though, she had a pretty bad flat spot on the side of her head. During my daughter's 4 month visit, I brought up the flat spot and was told by my pediatrician that " it would work itself out " . I said that wasn't a good enough answer so she sent us to the hospital to get x-rays. Those came back fine and that was that. I called her back and said that there had to be something more I could do to help this flat spot. That is when she finally referred me to a plastic surgeon. This is my first baby and I had never heard of torticollis (which she was never officially dx with) or plagiocephaly. It is drilled in our heads that we must put our babies to sleep on their backs but no one ever mentions to make sure you reposition them. There needs to be more awareness. All of this is preventable. It makes me sick to my stomach to think about it. Anyway, we got her helmet at Precision Prosthetics and Orthotics in St. Louis. Thanks for listening - it feels good to get it all out.Elaine (mom to Sophie - 9 months)

July 13, 2006

Yes, many women do not have funds for explant. It is a shame, and I blame the doctors who are putting them in. They should automatically build in an extra cost reserved for the inevitable sitation where implants need to come out. After all, they do admit that they don't last a lifetime. At the very least, they ought to encourage women to set aside that slush fund, and make it a condition before plunging headlong into the implant mess to have that money set aside for that inevitable day. It happens to all of us. Having said that, most women do find a way to get explant accomplished. One way or another. There have been some very creative financing options going on, but it does get done. Just make sure that the explanting surgeon understands what your expectations are, and get it in writing that they are going to remove all scar tissue. Make sure to ask for a copy of your operative report

afterwards, and try to establish a good rapport with your surgeon so you know he understands where you are coming from. He may not have to agree that your implants are making you sick, but he does have to agree to do to your body what you are requesting him to, since you are the one that lives with the results. Patty Carole <carole293@...> wrote: My husband is still active duty, 22 years. No I do not have other coverage. It would cost $6200 to get them out here. I cannot pay that

on a one person income family. Seems many women are in this condition. My only option is to have the military do it. I will talk to the surgeon and see what they do, I definately want the en bloc (capsule out) kind. My appt is tomm. at 8:15 to see if they will refer me for the surgery. I am praying for God's favor, Thanks for caring, Carole> >>

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July 14, 2006

Hello Elaine

Welcome to the group. I'm so sorry you got the run around and the

story of it will all go away on its own. Sadly many many parents

get told this story and the people we trust the most end up hurting

us. (peds)

Let us know how your daughter does in her new helmet and if you have

any questions, please ask away.

Sandy Willow's Mom

Torticollis resolved 02/04

Cranio Germany Grad 02/04

>

> Hi everyone. I am new to this group. I wish I would have found

> this group months ago. My daughter just turned 9 months old

> yesterday. She received her cranial molding helmet on 4/12/06.

It

> has been a battle since the day she was born. When I first

started

> breastfeeding her, I noticed she fed a lot better on one side than

> the other. It seemed she really did not like to turn her head to

> the left. I brought it up to my pediatrician on several

occassions

> and she said it would work itself out. I am involved with the

> Parents as Teachers program. During one of my visits with our

> parent educator, she was concerned that my 3 month old daughter

was

> only tracking 90 degrees. She said that she should be tracking

180

> degrees. I immediately called my pediatrician who then FINALLY

told

> me to start doing some neck exercises with her. Wow - within days

> she was able to track 180 degrees. I was furious that she did not

> mention these exercises to me prior to this!!! It was too late

> though, she had a pretty bad flat spot on the side of her head.

> During my daughter's 4 month visit, I brought up the flat spot and

> was told by my pediatrician that " it would work itself out " . I

said

> that wasn't a good enough answer so she sent us to the hospital to

> get x-rays. Those came back fine and that was that. I called her

> back and said that there had to be something more I could do to

help

> this flat spot. That is when she finally referred me to a plastic

> surgeon. This is my first baby and I had never heard of

torticollis

> (which she was never officially dx with) or plagiocephaly. It is

> drilled in our heads that we must put our babies to sleep on their

> backs but no one ever mentions to make sure you reposition them.

> There needs to be more awareness. All of this is preventable. It

> makes me sick to my stomach to think about it. Anyway, we got her

> helmet at Precision Prosthetics and Orthotics in St. Louis.

Thanks

> for listening - it feels good to get it all out.

>

> Elaine (mom to Sophie - 9 months)

>

July 26, 2006

Deanna, I am so sorry that I mistakenly called you Charlene, which is actually your baby's name. I am just worn out from all the Internet research I've been doing on this topic for the past month....not paying attention to details. Deanna Rantz <drantz@...> wrote: Hi. I am new to the group. I have a 5 month old baby girl named Charlenethat was diagnosed with Plagio flattening on the back right side of herhead and Tort on the left side of her neck. We went for our castingtoday and are

supposed to get our helmet in 2 weeks. We are doingstretches on her neck but I am confused as to what exactly the Tort is?If she is laying on the back right of her head, why would there betightness in the left side of her neck? You'd think the left side of theneck would be more stretched out instead... confusing. I read all your emails and feel well informed and supported! I ampretty sad about the whole thing and can't wait to get this over withand it hasn't even started yet! I am glad I am not alone. I hate thethought of people staring at my baby like there is something wrong and Ialso hate the fact that doctors don't make more of an effort to tellfirst time parents like me what can happen with their heads flatteningbecause of being on their backs. Trying to hold back the tears here in California,Deanna (daughter Charlene, 5 months old)

See the all-new, redesigned .com. Check it out.

July 26, 2006

simon has the tightness on the left side of his neck and he was basically left ear to left shoulder. when there head is tilted to the left its easier for them to look to the right so thats how they get the flattening on the right side atleast thats how it was explained to me. simon has been going to physical therapy since march and has had his doc band for 3 weeks, his tort has gotten alot better but the muscle is still tight so we are going to a ortho to get it checked out but not till sept 6th.

Aron Holwighttp://birds.lemonyfresh.com/gallery/http://b1.lilypie.com/2QXlm7.png

On 7/26/06, Deanna Rantz <drantz@...> wrote:

Hi. I am new to the group. I have a 5 month old baby girl named Charlenethat was diagnosed with Plagio flattening on the back right side of herhead and Tort on the left side of her neck. We went for our casting

today and are supposed to get our helmet in 2 weeks. We are doingstretches on her neck but I am confused as to what exactly the Tort is?If she is laying on the back right of her head, why would there betightness in the left side of her neck? You'd think the left side of the

neck would be more stretched out instead... confusing. I read all your emails and feel well informed and supported! I ampretty sad about the whole thing and can't wait to get this over withand it hasn't even started yet! I am glad I am not alone. I hate the

thought of people staring at my baby like there is something wrong and Ialso hate the fact that doctors don't make more of an effort to tellfirst time parents like me what can happen with their heads flattening

because of being on their backs. Trying to hold back the tears here in California,Deanna (daughter Charlene, 5 months old) --

July 27, 2006

I wanted to thank everyone for their support and feedback on my question

about tort and concerns in general. I am glad I am not alone in this...

it's been quite shocking for me.

I have been really worried about going out in public but feel better

after reading your emails about it.

This support group in wonderful and I'm sure I will write you soon with

questions after we get started with the helmet. We're going to Cranial

Therapies in Los Angeles which I hear is pretty good.

Since my baby is only 5 months old and still breastfeeding, any advise

on how to get her to go through growing spurts to get this over with

quicker or is that something totally up to the baby? (I'm obviously a

first-time mom!) She gets baby cereal every night but just a little bit.

Does starting solids help that along? I would assume so but have never

done this before...

THANK YOU EVERYONE!

I AM ATTACHING A PICTURE OF CHARLENE TOO (trying tummy time)!

>>> jberins@... 7/26/2006 5:41:28 PM >>>

Deanna, I am so sorry that I mistakenly called you Charlene, which is

actually your baby's name. I am just worn out from all the Internet

research I've been doing on this topic for the past month....not paying

attention to details.

I know exactly where you are coming from. Our pede just lightly told

us to do tummy time. She never noticed DJ's tort, despite my insistance

that his head leaned to one side. She also kept saying that his head

would round it. Anyway, that's water under the bridge. Now he's almost 7

months and we're scheduled for a casting on Monday.

Regarding the exercises, what you are saying actually makes sense.

The back right of the head is flat, because when she lies on her back,

she sort of " curls " her head toward her left shoulder, probably b/c the

muscle on that side of his neck is shorter/tighter than the right side.

So what you'll need to do is stretch out the neck muscle that is shorter

and tighter. DJ has the same issue, and the PT's recommendations also

puzled me at first, until I closely observed the way lays on his back.

Try to observe your baby and you will liklely see what I mean.

Deanna Rantz <drantz@...> wrote: Hi. I am new to

the group. I have a 5 month old baby girl named Charlene

that was diagnosed with Plagio flattening on the back right side of

her

head and Tort on the left side of her neck. We went for our casting

today and are supposed to get our helmet in 2 weeks. We are doing

stretches on her neck but I am confused as to what exactly the Tort

is?

If she is laying on the back right of her head, why would there be

tightness in the left side of her neck? You'd think the left side of

the

neck would be more stretched out instead... confusing.

I read all your emails and feel well informed and supported! I am

pretty sad about the whole thing and can't wait to get this over with

and it hasn't even started yet! I am glad I am not alone. I hate the

thought of people staring at my baby like there is something wrong and

I

also hate the fact that doctors don't make more of an effort to tell

first time parents like me what can happen with their heads flattening

because of being on their backs.

Trying to hold back the tears here in California,

Deanna (daughter Charlene, 5 months old)

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

See the all-new, redesigned .com. Check it out.

July 27, 2006

I am trying to find a physical therapist out here since I'm afraid I

won't help it enough on my own. So, does the physical therapy make the

tort go away completely after a while?

>>> pezzy777@... 7/26/2006 6:01:20 PM >>>

simon has the tightness on the left side of his neck and he was

basically

left ear to left shoulder. when there head is tilted to the left its

easier

for them to look to the right so thats how they get the flattening on

the

right side atleast thats how it was explained to me. simon has been

going to

physical therapy since march and has had his doc band for 3 weeks, his

tort

has gotten alot better but the muscle is still tight so we are going to

a

ortho to get it checked out but not till sept 6th.

Aron Holwig

http://birds.lemonyfresh.com/gallery/

http://b1.lilypie.com/2QXlm7.png

On 7/26/06, Deanna Rantz <drantz@...> wrote:

>

> Hi. I am new to the group. I have a 5 month old baby girl named

> Charlene

> that was diagnosed with Plagio flattening on the back right side of

her

> head and Tort on the left side of her neck. We went for our casting

> today and are supposed to get our helmet in 2 weeks. We are doing

> stretches on her neck but I am confused as to what exactly the Tort

is?

> If she is laying on the back right of her head, why would there be

> tightness in the left side of her neck? You'd think the left side of

the

> neck would be more stretched out instead... confusing.

> I read all your emails and feel well informed and supported! I am

> pretty sad about the whole thing and can't wait to get this over

with

> and it hasn't even started yet! I am glad I am not alone. I hate the

> thought of people staring at my baby like there is something wrong

and I

> also hate the fact that doctors don't make more of an effort to tell

> first time parents like me what can happen with their heads

flattening

> because of being on their backs.

>

> Trying to hold back the tears here in California,

> Deanna (daughter Charlene, 5 months old)

>

--

July 27, 2006

Keep your head up Deanna! I am just starting the journey (we haven't even seen the specialist yet), but I know that we will do whatever we can to help our baby girl's head get fixed. You are doing the right thing and just remember that as a baby, she will not remember what she is going through and it would be worse later if kids made fun of her for her head shape. I read someone say that the people who will stare and/or say rude comments are the same type of people that would have made fun of her later. I think it's good to look at the experience as a way to educate people about Torticollis and Plagiocephaly.

In terms of what Tort is, here is a link that may or may not be on the links section of this board. http://www.torticolliskids.org/. I am sure there are some helpful links under the links section as well. I am new to the board, so still learning all the ins and outs.

Good luck and keep your head up.

Jasmine

Savannah 6.5 months

Houston, TX

On 7/26/06, Deanna Rantz <drantz@...> wrote:

>> Hi. I am new to the group. I have a 5 month old baby girl named> Charlene> that was diagnosed with Plagio flattening on the back right side of her> head and Tort on the left side of her neck. We went for our casting

> today and are supposed to get our helmet in 2 weeks. We are doing> stretches on her neck but I am confused as to what exactly the Tort is?> If she is laying on the back right of her head, why would there be

> tightness in the left side of her neck? You'd think the left side of the> neck would be more stretched out instead... confusing.> I read all your emails and feel well informed and supported! I am

> pretty sad about the whole thing and can't wait to get this over with> and it hasn't even started yet! I am glad I am not alone. I hate the> thought of people staring at my baby like there is something wrong and I

> also hate the fact that doctors don't make more of an effort to tell> first time parents like me what can happen with their heads flattening> because of being on their backs.>> Trying to hold back the tears here in California,

> Deanna (daughter Charlene, 5 months old)-- I turned around one day and all of a sudden I was a grown up.Shooters Stationhttp://shootersstation.blogspot.com

August 5, 2006

Hi ,

Welcome to the group! We are happy to have you. You will be in great

hands at CT. Good luck!

Natasha

>

> Hi.

> My name is . I'm new at this but have found this group to be

> quite helpful. My daughter, Emma, is 10 months old. She will be

> going to Cranial Tech in Dallas for her casting on Aug. 14. I'm

both

> nervous and excited. Anyway, just wanted to introduce myself and

say

> thank you for sharing your experiences and information.

>

August 10, 2006

Hi Rhonda,

welcome to the group. you'll get a lot of good information here. if

you have questions or problems just ask. I'm glad to hear your

daughter did well at the casting.

-christine

mom to sydney/ 7mo/ starband 5-31-06

>

> Hello,

>

> My 9mo. old daughter had her casting today. It actually went better

> than I expected... We brought her in " tired " ... She actually nodded

> out while the PT was placing the first to pieces! We all had a little

> giggle... Looking forward to learning more and finding out " what's

> worked " for other parents out there.

>

> Rhonda (Oregon, WI)

>

August 17, 2006

Here's a good source of information regarding the different bands/helmets

that Orthomerica offers: http://www.orthomerica.com/pdf/starchart.pdf and

http://www.orthomerica.com/products/cranial/cranialindex.htm. We have a

STARband and have been very happy with the results that we have received so

far. You should get a CT scan done before you get the band to rule out

craniosyntosis (sp?). Perhaps that appointment can be bumped up sooner so

you can get in the band sooner. Which location are you going to to get the

band?

Take care,

Molly

California

Nicolas, 10 months, tort & plagio, STARband 4/25/06

, 3.5

, 6.5

New to group

Hello, My name is and we recently adopted our son. He was

6 months when placed in our arms. Right away we notice Jordan's flat

spot on the back of his head. Our doctors comment was " yes, it is

flat " and that was all that was said until this past week when Jordan

went in for his 9 month check up. I asked again about his head shape

and he is now scheduled for a CT scan in September. If the scan is

normal, the plan was to have him fitted for a helmet. Well, after

many late nights reading about Plagiocephaly,today I decided to call

our local Ortho group and ask for more info about helmet(they work

with orthamerica). He wanted to see Jordan right away and hoped we

could stop by today so he could measure his head. After our visit,

Jordan has been dianosised with Brachycephaly (108.2%) and would like

to start the process ASAP. My head was just spinning after hearing

this. Not only does Jordan have Brachycephaly, but it is severe (still

wondering why a referral wasn't made sooner). We have a

tenitive appointment for a fitting on Friday. Does anyone have

advice on the different orthoamerica helmets? We are suppose to

choose between the Starband and the starlight Bi-valved. At this

point I'm a little overwelmed. Is this orthopedic group moving too

fast? Is the casting procedure tramatic? Jordan cried just getting

his head measured. Now I want to cry!! Any advice will be greatly

appreciated.

For more plagio info

August 17, 2006

Hello and welcome to the group. Sorry to hear that the Drs were not

very proactive about your concerns about your Son's head shape.

Sadly, this is often the case. There have been many parents who had

to fight to get a referral and/or a prescription for a band/helmet.

Since your Son's Brachy is severe, I would highly recommend getting

him a band at his age to correct it. I was under the impression

that the Bi-Valve was more for Scaphocephaly (long narrow head

shape), but I could be wrong on that. Most babies that have brachy

usually get the regular STARband if they use an Orthomerica

Orthotist. Do you know how much experience the Orthotist has? This

is VERY improtant when selecting an Orthotist to band your child.

As far as the casting.... from what I have heard it isn't too bad

and only takes about 10 minutes. My Daughter was scanned for her

band and many places that use the STARband will use a scanner called

the STARscanner. This is something that you can ask about too.

Good luck and keep us updated.

Jen

(24.5 mo), tort resolved, Hanger Band Grad

(4.5 years)

>

> Hello, My name is and we recently adopted our son. He

was

> 6 months when placed in our arms. Right away we notice Jordan's

flat

> spot on the back of his head. Our doctors comment was " yes, it is

> flat " and that was all that was said until this past week when

Jordan

> went in for his 9 month check up. I asked again about his head

shape

> and he is now scheduled for a CT scan in September. If the scan is

> normal, the plan was to have him fitted for a helmet. Well, after

> many late nights reading about Plagiocephaly,today I decided to

call

> our local Ortho group and ask for more info about helmet(they work

> with orthamerica). He wanted to see Jordan right away and hoped we

> could stop by today so he could measure his head. After our visit,

> Jordan has been dianosised with Brachycephaly (108.2%) and would

like

> to start the process ASAP. My head was just spinning after hearing

> this. Not only does Jordan have Brachycephaly, but it is severe

> (still wondering why a referral wasn't made sooner). We have a

> tenitive appointment for a fitting on Friday. Does anyone have

> advice on the different orthoamerica helmets? We are suppose to

> choose between the Starband and the starlight Bi-valved. At this

> point I'm a little overwelmed. Is this orthopedic group moving

too

> fast? Is the casting procedure tramatic? Jordan cried just

getting

> his head measured. Now I want to cry!! Any advice will be greatly

> appreciated.

>

August 17, 2006

Hi

Sorry to hear your ped didn't offer help when you noticed the problem.

I think with a measurement of 108 you should start as quickly as

possible. Correction relies on growth and the sooner you start the

more growth you'll be able to catch. Our daughter was 100% and is now

around 92% after 2.5 mo. With brachy the head gets wider so it doesn't

usually correct back to " normal " measurements, but you should see a

lot of improvement.

We have a starband. I don't know why you would choose that or

starlight - i would ask the ortho. Our ortho uses a starscanner so we

didn't have to get casted, but nearly everyone says the casting isn't

bad at all. the procedure is very quick (15 mins).

Where do you live? In addition to orthomerica there is a company

called Cranial Techonologies (www.cranialtech.com) that is very well

known, and probably has the best reputation. they only do banding, so

their staff is very knowledgeble. however they don't have offices all

over the country and also depending on your insurance you may get

coverage with one provider and maybe not another. It might be worth

checking them out too.

We have a starband and are realy happy with our daughter's progress.

with the starband the ortho's experience is very important because

some have a ton, and some have very little

good luck.

-christine

mom to sydney/ 7.5 mo/ starband 5-31-06

>

> Hello, My name is and we recently adopted our son. He was

> 6 months when placed in our arms. Right away we notice Jordan's flat

> spot on the back of his head. Our doctors comment was " yes, it is

> flat " and that was all that was said until this past week when Jordan

> went in for his 9 month check up. I asked again about his head shape

> and he is now scheduled for a CT scan in September. If the scan is

> normal, the plan was to have him fitted for a helmet. Well, after

> many late nights reading about Plagiocephaly,today I decided to call

> our local Ortho group and ask for more info about helmet(they work

> with orthamerica). He wanted to see Jordan right away and hoped we

> could stop by today so he could measure his head. After our visit,

> Jordan has been dianosised with Brachycephaly (108.2%) and would like

> to start the process ASAP. My head was just spinning after hearing

> this. Not only does Jordan have Brachycephaly, but it is severe

> (still wondering why a referral wasn't made sooner). We have a

> tenitive appointment for a fitting on Friday. Does anyone have

> advice on the different orthoamerica helmets? We are suppose to

> choose between the Starband and the starlight Bi-valved. At this

> point I'm a little overwelmed. Is this orthopedic group moving too

> fast? Is the casting procedure tramatic? Jordan cried just getting

> his head measured. Now I want to cry!! Any advice will be greatly

> appreciated.

>

August 21, 2006

Hello Ruth,

Sorry you've been feeling so poorly. What you are describing has a

name: " crisis " ! You are going to need help, whether it is given

freely or purchased. I would suggest making a list of all your

support people and think about how you could ask them to help.

Cooking, cleaning, child care (so you can rest), laundry...anything

to lighten your burden. If you are able to pay for a housecleaning

service, even once a month, it will help a lot. I'm sure you will

feel better again once you can take meds--and you may need to go to

bottle feeding so you can start.

All the best.

Sierra

--- In , " annabelle506 " <annabelle506@...>

wrote:

>

> Hello everyone, my name is Ruth and I've had RA for 2 years now,

it's

> been rough ride, I recently had a baby and during my pregnancy my

RA

> went in remission, but those days are long gone it has flared up

twice

> as bad as before. I am struggling very hard, I am in constant pain,

my

> hands my knees ankles, it becomes unbearable at times. I'm not

taking

> anything now be/cuz I am nursing my baby, but I find myself in

extreme

> pain, Ive lost a lot of my hand strength, I'm worried that it's

> getting worse with each passing day. I need some advice from any of

> you regarding what I can do to ease the pain, I have very bad days

> when I just cry all day because I have 3 children who need me...

and

> always so tired and with pain I don't have the energy and the truth

is

> I feel this disease is taking over my life ...please any advice

will

> be so greatly appreciated...thank you again

>

> Ruth

>

August 21, 2006

Sorry you are having such a rough time, Ruth. Low-dose prednisone is usually

considered safe while breastfeeding. Have you asked any of your physicians

for help?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New to group

> Hello everyone, my name is Ruth and I've had RA for 2 years now, it's

> been rough ride, I recently had a baby and during my pregnancy my RA

> went in remission, but those days are long gone it has flared up twice

> as bad as before. I am struggling very hard, I am in constant pain, my

> hands my knees ankles, it becomes unbearable at times. I'm not taking

> anything now be/cuz I am nursing my baby, but I find myself in extreme

> pain, Ive lost a lot of my hand strength, I'm worried that it's

> getting worse with each passing day. I need some advice from any of

> you regarding what I can do to ease the pain, I have very bad days

> when I just cry all day because I have 3 children who need me... and

> always so tired and with pain I don't have the energy and the truth is

> I feel this disease is taking over my life ...please any advice will

> be so greatly appreciated...thank you again

>

> Ruth

August 23, 2006

Hi Sierra,

Well I have been getting help from my husband and once in a while his mom

stops by, and honestly housecleaning has taken a back seat, regarding the kids

they'll be starting school soon, so I'll be left only with the baby for a few

hours, which eases my work load for a while, but that's about all I can do

regarding help, the other thing is that I haven't told many of my family members

that I have RA, I pretty much dealt with it on my own at the begining and since

I was on MEDS I was able to function normally, but it's so bad now. Now

regarding the nursing I have thought about stopping but I just feel so bad

doing so... I don't know if I can.

Thanks again for hearing me out...

snowdrift52003 <snowdrift52003@...> wrote: