New Member

[Guest guest]

Ellen, yes, there's little hope in finding good doctors here too. I

think there's just one ILADS doctor here in the continent, she's here

in Switzerland but so full, she doesn't get new patients for quite a

long time. I tried, but no chance.

But I never really trusted 'normal' doctors for cronic diseases anyway.

I just thought, well, lyme is an infectious disease and usually our

medicine can do well with infections. Wrong. If fast cured, yes, but if

it becomes cronic, then stuck again !!

Gotta go, daughter woke up!

Selma

>

> Hi Selma,

> jeesh! Your info (below) sounds so depressingly familiar!

>

> At least things are slowly improving, due to the super efforts of

> individuals- who fight their doctor while they fight the disease-

> and to the efforts of those doctors and scientists who put their

> conscience before the Almighty Dollar and 'Prestige' and being

> popular. If we left it to the medical establishment, forget it.

>

>

> ellen

> (who actually visited Selma, AL. At least I won't forget your name!)

[Guest guest]

do. I try to exercise but never feel better, just

> more stiff.

> The RD mentioned a gelling effect that takes place when ever I sit

> or am motionless for a time. Sitting down in the evenings is a

> nightmare because I know I have to get up. I am so stiff I can

> hardly move. There are times when I cannot get out of a car if I

> have been driving for any length of time. It effects my entire body.

> Does anyone know about this gelling effect? I will ask more Qs when

> I return to RD but would like to know if anyone else has heard of

> this.

I've always had trouble with moving after NOT moving for any length of

time. I've always understood that this is a normal part of arthritis.

<shrugs>

-Marietta

[Guest guest]

Welcome to the group. I am new myself, basically sought out the site to get up

to date info on meds. You know the Drs. aren't taking the meds , just

perscribing them. I want to know how I am going to feel, what all the risks and

benefits are. Sounds like you have been through all the meds? I have been on

Humira a month and half, just started Mobic 7.5x 2 a day. Have noticed a big

difference. The fatigue is all but gone, the pain is tolerable and am beginning

to feel like my old self. I had felt bad so long before my diagnosis, I almost

forgot how to feel good. I also take a folic acid daily. Those with PSA,

remember do not take Vit C. It just kicks your immune system up and ours is

already in high gear. I wish I had some suggestions for you. I know there are

alot of people on this site that have probably been where you are, feeling like

there is nothing left. Have you tried accupuncture. I did that for a couple of

years. I am in a small town and when the

lady that did that moved I could no longer go. It did take the edge off and

seemed to give me energy.

I hope you find something that works for you. Since I am at the beginning of my

tx, I may very well be where you are someday. Hopefully new things will come

around.

betsycarc5 <betsycarc5@...> wrote:

Hello All

I have had P since I was 15 and PA since 23. I am turning 44 next

month and am sorry I didn't take this disease seriously until I had

so much pain I had to sell my business. I have always been active

and have taken care of business as if this disease never existed.

I have been on most of the drugs you all have mentioned over the

past ten years. Nothing seems to work except for Lodine. I am off

all meds due to an ulcer diagnosed last week. Am in so much pain I

can hardly concentrate on my job at a doctor's office and my family

suffers when I do. I try to exercise but never feel better, just

more stiff.

The RD mentioned a gelling effect that takes place when ever I sit

or am motionless for a time. Sitting down in the evenings is a

nightmare because I know I have to get up. I am so stiff I can

hardly move. There are times when I cannot get out of a car if I

have been driving for any length of time. It effects my entire body.

Does anyone know about this gelling effect? I will ask more Qs when

I return to RD but would like to know if anyone else has heard of

this.

I just moved to Tennessee and have seen a new RD recently but he is

much less aggressive than my RD in New Jersey. Although I hated

being on all the meds, I now know my only choice to combat this is

to find a permanant solution to this PA.

McCarthy

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

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[Guest guest]

In a message dated 30/08/2006 13:24:01 GMT Daylight Time,

betsycarc5@... writes:

I have had P since I was 15 and PA since 23. I am turning 44 next

month and am sorry I didn't take this disease seriously until I had

so much pain I had to sell my business.

Hi betsycarc,

Welcome to the group. I'm glad you found us but sorry that things are bad

enough that you had to go looking.

Most of us will know what you mean about getting up after sitting for a

while. I am not so bad just now but I have certainly been there, psyching myself

up

to stand up and walk, 'C'mon ............you can do it!.............the

pain will ease off eventually................no, no I can't! ...........Yes

you can c'mon.............do it now.' lol Hands up who recognises that? lol

This is a great group that you find yourself in. If you are looking for info,

advice or just a shoulder to cry on, this is the

place..........................as long as you don't lean too hard on the

shoulders because some of them

are sore. lol

Hope to hear from you again,

[Guest guest]

In a message dated 9/1/2006 7:37:50 A.M. Eastern Standard Time,

martincoyless@... writes:

psyching myself up

to stand up and walk, 'C'mon ......to stand up and walk, 'C'mon to

stand

pain will ease off eventually..pain willpain will ease off eventually..

you can c'mon.......you can c'mon.......<WBR>......do it now.' lol Hands up

,

While I work in my home office, my cat sits on the edge of the desk.

Periodically, she gets up to take a stroll around the house. Lately she's been

inviting me OOOOOwwwwLLLLLLL!!!

I would groan get up and then have to wait for her while she stretched. I

now stretch with her. First one leg then the other.

Surprise, getting going is not so bad. We stroll around the house.

Checking the food and water in the kitchen, then the cat perches in the living

room,

and bed room, check out the litter in the laundry room and the dirty laundry

on the floor in my bedroom. Then it's back to work for me and rest for her.

As a result of this routine, I now stretch every time I get up from a

sitting or laying position. My attitude about getting around is entirely

different.

For those of you with pets, cats especially, watch what they do to limber up

when they first wake up or get up. I once had a chiropractor who had a

booklet of cat exercises that he gave his patients. I had forgotten all about

them. But I remember them as stretching exercises that attend to all the major

muscle groups. When done correctly you fee great.

Sandy swOhio

[Guest guest]

Noel, welcome and join right in! This is a great group of people. I also

have a 9 1/2 year old son diagnosed with PDD. My older son, who is 15, is

diagnosed with Asperger's. Pam

[Guest guest]

Welcome Noel! Feel free to post anytime you want!

Roxanna

( ) New member

Hello there all---

Well I am a mom of a 9 1/2 year old that just about a year ago was

diagnosised with AS. Prior to that his diagnosis was ADHD/ADD. I

wanted to join the group mainly to maybe find some others that feel

as I do. I will admit I knew all along that there was just something

different about my son even as a toddler. I mentioned various times

to the doctor's but was always simply brushed off as being a first

time mom syndrome. Anyway, I am sure there are some of you that

understand the stress of having a child with such troubles. Since

this battle has begun I have gained over 40 pounds due to stress I am

sure. It was hard to come to grips that my child wasn't perfect. He

is a beautiful child. But as we all know there is always that other

side to them. Also being a single parent and taking all the tolls

myself hasnt really helped.

I will say that the more I learn the better it gets. It is a long

process to almost deprogram yourself to help them.

Well I hope to find her advice and I would love to maybe find a few

email buddies if your looking for someone to vent with I would love

to be a sounding board as well as have a sounding board. I dont have

the time for formal groups so i figured this would be best.

take care,

noel

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[Guest guest]

Welcome Noel,

I am . I have three boys on the spectrum. I just learned that

two are more appropriately a High Functioning Autism, where one is

more of an Aspie, because he has high cognitive functioning and

copes pretty well (not perfectly, but well)

My oldest had the ADHD and odd diagnosis originally.

My youngest was 'too cute' for anything, diagnosis, and

my youngest had PDD as a diagnosis.

I am also an Aspie, and sometimes called Mild but the non

professionals, but in reality, the struggles I have to go through

dailyl, *and the waiting to see if my husband will leave me, or if I

will just fall apart* (emotionallY)

I completely understand the struggles of having a doctor NOT GET IT

when we are concerned. I can't imagine how tough it is, doing this

all alone. But I can't help but wonder if maybe you are better off.

I guess that would depend on your circumstances. In my case, I feel

I would not do so well, but then,,, well, I just wonder.

Please join in often, if you can. Your information can provide

wonderful insight, and I am sure we can do the same for you!

!Welcome!!

*smiles*

lisa b

>

> Hello there all---

>

> Well I am a mom of a 9 1/2 year old that just about a year ago

was

> diagnosised with AS. Prior to that his diagnosis was ADHD/ADD. I

> wanted to join the group mainly to maybe find some others that

feel

> as I do. I will admit I knew all along that there was just

something

> different about my son even as a toddler. I mentioned various

times

> to the doctor's but was always simply brushed off as being a first

> time mom syndrome. Anyway, I am sure there are some of you that

> understand the stress of having a child with such troubles. Since

> this battle has begun I have gained over 40 pounds due to stress I

am

> sure. It was hard to come to grips that my child wasn't perfect.

He

> is a beautiful child. But as we all know there is always that

other

> side to them. Also being a single parent and taking all the tolls

> myself hasnt really helped.

>

> I will say that the more I learn the better it gets. It is a

long

> process to almost deprogram yourself to help them.

>

>

> Well I hope to find her advice and I would love to maybe find a

few

> email buddies if your looking for someone to vent with I would

love

> to be a sounding board as well as have a sounding board. I dont

have

> the time for formal groups so i figured this would be best.

>

>

> take care,

>

> noel

>

[Guest guest]

Hi Sandy,

After I read this I tried it with my pet. Trouble is he is a budgie so my

arms are absolutely killing me after flying around the room! lol I think you

know I'm lying don't you.

Yes, that would be a good idea to try. I tend to try to stretch the stuff

that is stiff and sore but maybe trying to stretch all muscles will help us get

up to pace quicker..............................as long as we don't overdo it

and end up in bed again. lol

Take care,

In a message dated 03/09/2006 19:39:06 GMT Daylight Time,

muddymeadows@... writes:

I would groan get up and then have to wait for her while she stretched. I

now stretch with her. First one leg then the other.

Surprise, getting going is not so bad. We stroll around the house.

Checking the food and water in the kitchen, then the cat perches in the

living room,

and bed room, check out the litter in the laundry room and the dirty laundry

on the floor in my bedroom. Then it's back to work for me and rest for her.

As a result of this routine, I now stretch every time I get up from a

sitting or laying position. My attitude about getting around is entirely

different.

[Guest guest]

Hi there..I am Jan and it is nive to meet you.Sorry it is under these conditions..There is a great chance he will be ok..First of allhe needs to go to a Dr to make sure he does have it then take it from there..There are treatments out there for it that can put it in remnission as I say..Sometimes the treatment is postive..Some in here have been successful..It depends on him alot too but yes he can live a normal life..Please feel free to ask anything and I do wish you and your nephew the very best..Most of all he needs love.. Janmaura_francis <JMLKJ@...> wrote: Hi everyone. I am looking for some words of hope. My 17 year old nephew has really gotten a raw deal in life- drug addicted mother and no father ( never met him). Now it looks as though he is showing signs of HepC which my sister has. She is mentally disabled after many years of drug addiction and Methodone maintenance.He is the sweetest looking boy with white blond hait and sparkling blue eyes- my heart is crushed- he does not deserve this. Doctors think that he got it before birth. He is so healthy looking that I cannot process that he has this disease. Will he have a full and normal life.He will be seeing a specialist soon. Are there any cures on the horizon? Thank you for reading this! MauraJan

All-new - Fire up a more powerful email and get things done faster.

[Guest guest]

In a message dated 9/11/2006 8:38:32 PM Eastern Standard Time, szeis_1@... writes:

This is a good place for support and if you have anyquestions, just ask.Sharon

Thanks so much Sharon. This "kid" has had such a difficult life because of his circumstances and it just kills me that he has to have a disease that he was born with because of his mother's indiscretions. You are giving me hope. I will stick around and learn what I can. Thank you sooo very much for your reply!

Maura

[Guest guest]

In a message dated 9/11/2006 7:23:28 AM Eastern Standard Time, jfw4359@... writes:

Please feel free to ask anything and I do wish you and your nephew the very best..Most of all he needs love..

Hi Jan,

Thank you for your response. He is getting blood results that worry the General practitioner so he is being sent to see a "specialist". Maybe, against all odds, he will not have Hep C. I already know alot about it because my sister has it. She sleeps most of the time and has no life. She gets SSI. Most of her problems are from years of drug abuse and NOT the disease although she claims that is why she is tired all the time!

I appreciate your support!

Maura

[Guest guest]

There is a good chance he will have a normal life. I

was diagnosed 5 years ago yesterday. I went through

treatment and have been undetectable for almost 4

years. There are many new treatments coming out too.

This is a good place for support and if you have any

questions, just ask.

Sharon

--- maura_francis <JMLKJ@...> wrote:

> Hi everyone. I am looking for some words of hope.

> My 17 year old

> nephew has really gotten a raw deal in life- drug

> addicted mother and

> no father ( never met him). Now it looks as though

> he is showing signs

> of HepC which my sister has. She is mentally

> disabled after many years

> of drug addiction and Methodone maintenance.He is

> the sweetest looking

> boy with white blond hait and sparkling blue eyes-

> my heart is crushed-

> he does not deserve this. Doctors think that he got

> it before birth.

> He is so healthy looking that I cannot process that

> he has this

> disease. Will he have a full and normal life.He will

> be seeing a

> specialist soon. Are there any cures on the horizon?

> Thank you for

> reading this! Maura

>

>

>

>

>

__________________________________________________

[Guest guest]

Hey Sharon how are ya?? Hope all is ok with everyone in here.,,Get in touch when ya got the tiome ok?? FFFF, JanSharon Zeis <szeis_1@...> wrote: There is a good chance he will have a normal life. Iwas diagnosed 5 years ago yesterday. I went throughtreatment and have been undetectable for almost 4years. There are many new treatments coming out too.This is a good place for support and if you have anyquestions, just ask.Sharon ---

maura_francis <JMLKJ@...> wrote:> Hi everyone. I am looking for some words of hope.> My 17 year old > nephew has really gotten a raw deal in life- drug> addicted mother and > no father ( never met him). Now it looks as though> he is showing signs > of HepC which my sister has. She is mentally> disabled after many years > of drug addiction and Methodone maintenance.He is> the sweetest looking > boy with white blond hait and sparkling blue eyes-> my heart is crushed- > he does not deserve this. Doctors think that he got> it before birth. > He is so healthy looking that I cannot process that> he has this > disease. Will he have a full and normal life.He will> be seeing a > specialist soon. Are there any cures on the horizon?> Thank you for > reading this! Maura>

> > > > __________________________________________________

[Guest guest]

Hi Maura, Support is just what we are here for besides just making great friends..We always welcome newbies..We want to try and help all we can but there are times we sghare a joke or 2 just to break the stress..I do wish your nephew the very best..Keep us posted ok?? FFFF, JanJMLKJ@... wrote: In a message dated 9/11/2006 7:23:28 AM Eastern Standard Time, jfw4359 writes: Please feel free to ask anything and I do wish you and your nephew the very best..Most of all he needs love.. Hi Jan, Thank you for your response. He is getting blood results that worry the General practitioner so he is being sent to see a "specialist". Maybe, against all odds, he will not have Hep C. I already know alot about it because my sister has it. She sleeps most of the time and has no life. She gets SSI. Most of her problems are from years of drug abuse and NOT the disease although she claims that is why she is tired all the time! I appreciate your support! Maura Jan

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

In a message dated 9/12/2006 12:06:10 PM Eastern Standard Time, jfw4359@... writes:

We want to try and help all we can but there are times we sghare a joke or 2 just to break the stress..I do wish your nephew the very best..Keep us posted ok??

Thanks Jan,

I've already forwarded one about the women drivers!

LOL Maura

[Guest guest]

In a message dated 9/13/2006 7:21:20 PM Eastern Standard Time, ralexanthegreat@... writes:

Some actually clear the virus without treatment.

OMG - You have given me some hope- Not to sound like some sort of religious fanatic but I am going to pray to St. Jude- He always comes through for me in desperate cases!!!. My sister (age 52) also has a bad case of Hep C but she is still getting around although she is on SSI. Thank you for your response. I am going to pray for you as well.

Maura

[Guest guest]

Hi MauraI'm sorry to hear about your nephew. About the only thing good is that he is young and probably in good health other than the hep. Many of the people in the group have had good results with treatment while others like me have not. Since he is young depending on what his lab results show the Dr.s might wait before starting treatment. Some actually clear the virus without treatment.maura_francis <JMLKJ@...> wrote: Hi everyone. I am looking for some words of hope. My 17 year old nephew has really

gotten a raw deal in life- drug addicted mother and no father ( never met him). Now it looks as though he is showing signs of HepC which my sister has. She is mentally disabled after many years of drug addiction and Methodone maintenance.He is the sweetest looking boy with white blond hait and sparkling blue eyes- my heart is crushed- he does not deserve this. Doctors think that he got it before birth. He is so healthy looking that I cannot process that he has this disease. Will he have a full and normal life.He will be seeing a specialist soon. Are there any cures on the horizon? Thank you for reading this! Maura

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

MauraPrayer is the best thing. It has kept me optimistic through the years. I thank the Lord everyday that he lets me have life. He gives me the strength to get through the bad times, and joy in the good.In a few days I'm going to be moving from my home in Corpus Christi to a home for veterans in Temple TX. where I will be close to medical care. I didn't want to move but tensions have gotten high at home. I live with my daughter and her family. Her husband is the only one bringing in any money right now. Counting my brand new Great grand baby there are 9 of us living in a 2 bedroom house. I was only going to live with them until I got my disability from social security, but received a letter the other day that it was going to be 12 or 18 months before I even have my hearing, then another 4 months before I know what the decision will be. I just can't ask them to support me for that long. They have already helped me for the last year and a

half.JMLKJ@... wrote: In a message dated 9/13/2006 7:21:20 PM Eastern Standard Time, ralexanthegreat writes: Some actually clear the virus without treatment. OMG - You have given me some hope- Not to sound like some sort of religious fanatic but I am going to pray to St. Jude- He always comes through for me in desperate cases!!!. My sister (age 52) also has a bad case

of Hep C but she is still getting around although she is on SSI. Thank you for your response. I am going to pray for you as well. Maura

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

Riza,

Welcome to the group! It all kind of comes down to what your own

ped believes. Some are totally against banding, some for, and

others will go along with you. A properly fitted band in the hands

of an experienced orthotist/clinician will work! Especially with a

child as young as yours. What area do you live in and perhaps

someone here lives near you and can give you advice?

Natasha

Atlanta

>

> Hi,I'm a mother of 2 and I have a 5 months old with brachy. I've

been

> doing the repositioning therapy, tummy time for almost 2 months

now and

> found that there's very little improvement. The bony prominence on

both

> sides and top of the head are still present with a bit of

improvement

> but the back remained flat. I've been reading the other moms

stories

> and been wondering why some of them are refused prescription for a

band

> by their physicians. What are the indications for a helmet or band

> treatment? Is it indicated only for severe cases? What happens to

mild

> cases with a bit of facial asymmetry(eye and ear)? Next week, we

are

> going to do a CT scan and have an appointment with a neurosurgeon.

The

> pediatrician told me that banding is cosmetic and it doesn't

affect the

> brain's growth.What happens if your physician refused to give it

to you

> and you think that your child needs the band? I'm wondering

whether

> it's better to go see a craniofacial specialist.Does anyone have

any

> idea?

>

> Riza

>

[Guest guest]

We have found that there are some doctors that just don't think it works and feel that it cost too much money when they have seen kids who dont have helmets have good outcomes. Mostly all neurosurgeons we have seen just love the helmets. If you have premature closing of the sutures a helmet would not really do much at all. We saw a few doctors who made us feel that we were not doing tummy time nor repositioning. My husband and I are both well educated people and both work in the medical field and were doing everything we were suppose to do. But our daughter had tort so bad that it did not matter how we laid her she would snuggle down to what felt good for her. So from day one it was a battle and then she was 6wks premie so that was even more time spent laying on her back. Needless to say we are not seeing the peds dr nor the first neurosurgeon we went to just cause the way they made us feel. Moms have something more powerful than anything and that is

instinct!!!! If you feel like you want to try the helmet then seek another opinion at least if will make you feel better. The ct scan might show premature closing of sutures then repositioning would not help. Our peds did the same thing so don't worry. Our daughter has plagio, tort, and PVL. We have been through 2 helmets and by the time the 2nd was adjusted her sutures are closed so its probably not going to work and we are having surgery next week. You need to wait til you see a neurosurgeon. They are in such a different league than some in peds. But this is all my opinion some peds are great its just peds neurosurgeons know more obviously about the skull. Our first neurosurgeon vist consisted of a 6 hour car ride in ice driving on an interstate that was being closed at every exit we were passing. Only to be told we should be glad that we have a girl whose hair will hide her deformalities. Yeah

we were SHOCKED!!! That was from a neurosurgeon at the Denver Childrens hos. We have since seen 3 other peds neurosurgeons in the military and outside and they all said she needed helmet if not surgery. So just an example of different opinions. Natasha Gubash <ngubash@...> wrote: Riza,Welcome to the group! It all kind of comes down to what your own ped believes. Some are totally against banding, some for, and others will

go along with you. A properly fitted band in the hands of an experienced orthotist/clinician will work! Especially with a child as young as yours. What area do you live in and perhaps someone here lives near you and can give you advice?NatashaAtlanta>> Hi,I'm a mother of 2 and I have a 5 months old with brachy. I've been > doing the repositioning therapy, tummy time for almost 2 months now and > found that there's very little improvement. The bony prominence on both > sides and top of the head are still present with a bit of improvement > but the back remained flat. I've been reading the other moms stories > and been wondering why some of them are refused prescription for a band > by their physicians. What are the

indications for a helmet or band > treatment? Is it indicated only for severe cases? What happens to mild > cases with a bit of facial asymmetry(eye and ear)? Next week, we are > going to do a CT scan and have an appointment with a neurosurgeon. The > pediatrician told me that banding is cosmetic and it doesn't affect the > brain's growth.What happens if your physician refused to give it to you > and you think that your child needs the band? I'm wondering whether > it's better to go see a craniofacial specialist.Does anyone have any > idea?> > Riza>

[Guest guest]

Hi,

I think Cranial Tech will give you an honest opinion if he needs a

band or not. What did they say? Did they give you any measurements?

you could post some photos and get opinions here, or look at before

and after photos in the photo section and compare for yourself. you'll

probably find kids babies look more or less like your baby (in terms

of head shape). the band is easy to get used to and we've seen great

correction so far.

good luck with your decision.

-christine

mom to sydney/ 8.5 mo/ starband 5-31-06

>

> Hello. My son is 10 months old. He has plagiocephaly. I

> noticed his left side of his head being flat at 2 months. My ped. said

> his head would basically reshape itself in the next month. At 4 months

> this did not happen. I got a second opinion in the same ped. office.

> This ped. referred us to a neurologist. The neurologist determined

> ' condition as mild plagiocephaly and a helmet or band would

> not be necessary. I still feel at this time that my son's head is

> still flat and his face is mishaped by this. I went ahead and met with

> Cranial Tech. to have him fitted. I spoke to the ped. for a

> prescription who again tried to steer me away from banding. I am so

> confused as to what to do for my son. I feel the time is NOW to get

> something done. My husband doesn't feel that it will be noticable once

> my son grows up and has hair.

>

[Guest guest]

Hello, I'm not trying to step on anyone's toes here, but I disagree

with the statement that Cranial Tech will give you an honest

opinion. I'm sure this is not the case for everyone, there are

probably some technicians there that would be honest, however, I

think that they are biased. The plastic surgeon that my son sees is

a well known one in chicago and has met the woman who founded

Cranial Tech on a number of occassions and gone to many of her

seminars. I spoke with her as to whether or not my son needed a

helmet, she was on the border, but let me decide (i decided to get

one!). She also told me that she thinks that Cranial Tech does the

best job, however, that the woman who founded it is helmet happy and

would just as soon have every kid in a helmet (exaggeration-but you

get the idea). Cranial Tech is trying to run a business, at $3000 a

helmet, it's hard to think that anyone that works there will not

have a bias opinion in favor of banding. Correct me if I'm wrong, I

may just be too cynical . When I went in to a consultation, the

technician assured me my son would greatly benefit from a helmet.

He has mild plagio, but nonetheless, I am going to get him banded.

But my decision had nothing to do with what the technician said.

ly, if there was any doubt in my mind (which there is) then I

would go with the helmet (which I am). To anyone who isn't sure,

you should get an unbiased opinion, from a doctor, a friend, etc. I

agree with that you should compare your childs head with

others that are shown in this group, or post his pictures. Good luck!

, mom to Tyson

> >

> > Hello. My son is 10 months old. He has

plagiocephaly. I

> > noticed his left side of his head being flat at 2 months. My

ped. said

> > his head would basically reshape itself in the next month. At 4

months

> > this did not happen. I got a second opinion in the same ped.

office.

> > This ped. referred us to a neurologist. The neurologist

determined

> > ' condition as mild plagiocephaly and a helmet or band

would

> > not be necessary. I still feel at this time that my son's head

is

> > still flat and his face is mishaped by this. I went ahead and

met with

> > Cranial Tech. to have him fitted. I spoke to the ped. for a

> > prescription who again tried to steer me away from banding. I

am so

> > confused as to what to do for my son. I feel the time is NOW to

get

> > something done. My husband doesn't feel that it will be

noticable once

> > my son grows up and has hair.

> >

>

[Guest guest]

We were in the same boat as you this time last year. I think it was

called the " SS I want to kill the pediatrician " ...LOL. As for us, we

banded for 16 weeks and now have a kid with a perfectly round head

(whatever that it?!?!) What the MDs should have also told you is

that it is NOT just cosmetic. Since it is a relatively new condition

there is evidence (only evidence) that if left untreated it can lead

to jaw alignment problems (TMJ) and ear problems (drainage issues)

My husband and I finally realized we never wanted to look back and

feel like we didn't do something we had the opportunity to fix.

Good Luck!

Meagan

Nolan

DOC GRAD 3/06

>

> Hello. My son is 10 months old. He has plagiocephaly. I

> noticed his left side of his head being flat at 2 months. My ped.

said

> his head would basically reshape itself in the next month. At 4

months

> this did not happen. I got a second opinion in the same ped.

office.

> This ped. referred us to a neurologist. The neurologist determined

> ' condition as mild plagiocephaly and a helmet or band

would

> not be necessary. I still feel at this time that my son's head is

> still flat and his face is mishaped by this. I went ahead and met

with

> Cranial Tech. to have him fitted. I spoke to the ped. for a

> prescription who again tried to steer me away from banding. I am

so

> confused as to what to do for my son. I feel the time is NOW to

get

> something done. My husband doesn't feel that it will be noticable

once

> my son grows up and has hair.

>

[Guest guest]

Welcome to the group! You are right, if you do want to do

something, time is running out. What does your gut instinct tell

you?

Natasha

>

> Hello. My son is 10 months old. He has plagiocephaly.

I

> noticed his left side of his head being flat at 2 months. My ped.

said

> his head would basically reshape itself in the next month. At 4

months

> this did not happen. I got a second opinion in the same ped.

office.

> This ped. referred us to a neurologist. The neurologist

determined

> ' condition as mild plagiocephaly and a helmet or band

would

> not be necessary. I still feel at this time that my son's head is

> still flat and his face is mishaped by this. I went ahead and met

with

> Cranial Tech. to have him fitted. I spoke to the ped. for a

> prescription who again tried to steer me away from banding. I am

so

> confused as to what to do for my son. I feel the time is NOW to

get

> something done. My husband doesn't feel that it will be noticable

once

> my son grows up and has hair.

>