Re: Debating on helmet

[Guest guest]

Hi & welcome to our group!

You are in a tough spot right now trying to decide whether or not you

should get your child a helmet! I debated many nights over whether

or not to band my daughter. We decided to as my daughter's case was

severe.

One of our group moderators, Niki is also from your Philadelphia

area - her very cute twins are our front page stars! I'll let her

tell you about her STARband story. She had a very knowledgable (and

handsome, hehe, inside joke!) orthotist who treated her twins. The

key to having success with these bands is a knowledgable orthotist

with good experience. If you do decide to go w/a STARband be sure to

ask lots of questions inquiring about his/her experience in treating

plagio kids with their band. Ask for before & after photos of

patience as well as references.

Your daughter is at a great young age to begin with a band if you

decide to go that route. Especially if her case is considered mild

you will most likely get good & fast improvement.

In the mean time, you can try repositioning her to keep her off her

flat side. Check out this website for helpful repositioning tips.

You might also want to check out the " questions for the Dr " section

in the webpage. There's also a list of questions for the orthotist

that you might want to print IF you decide to band your daughter.

www.plagiocephaly.org/support - you can also check out " compare some

cranial orthosis " section to compare the DOCband vs. the STARband.

Most children adjust to wearing their helmets just fine. They

usually sweat a lot for the first couple of weeks, but after their

body temp adjusts to the band, the sweating diminishes. If you have

air cond. in your home, I'm sure she'd do fine with the band over

summer.

Welcome again......please keep us updated on your decision. Good

luck!

Debbie Abby's mom DOCGrad

MI

> Hello everyone,

>

> I am new to this group and since you all seem so knowledgeable, I'd

> like to ask a few questions. I am debating on getting a helmet for

> my 5 month old daughter. I took her to a neurosurgeon who said her

> condition was mild and that she didn't need a helmet. However, it

> seems like many doctors make these statements and I'm concerned

that

> if I don't go ahead with a helmet then I'll regret it in the

future.

> I just found out that she has torticollis - none of her doctors

ever

> mentioned this. Fortunately I have a friend who is a physical

> therapist who diagnosed her. There is not a D.O.C. clinic in my

area

> (I live in the suburban Philadelphia area) so we will most likely

go

> with the Star Band. Does anyone know if one helmet is better than

> the other? Also, since summer is approaching, will it be extra

> difficult for my daughter to adjust to having this helmet on her

> head?

>

> Thanks for any input you have.

>

>

[Guest guest]

Hi !

I'm new to the group also and have been going through the same thoughts as you. My son is almost 8 months and was found to have torticollis at 3 months. None of the doctors realized. My mother noticed him favoring one side. So I brought him to a specialist and then he was diagnoised with it. He's been in therapy ever since. A couple of months ago a neurologist recommended we see a craniofacial doctor for the helmut. He has a mild case of flatness on one, one ear is slightly forward than the other, and one eye appears bigger than the other. No one realizes this unless I point it out.

The Craniofacial doctor said we should get the helmut (Starband). I didn't want to do it at first. My husband thought we should. I tried lots of repositioning for two months. However, there are only slight changes. Ultimately, we went for the fitting last week and it will be ready soon. I guess if we have an opportunity to help our children I now feel it's the have right decision. I'll just have to be strong. Good luck and keep us posted. Bonnie

debbieandabby <dj2kirby@...> wrote: Hi & welcome to our group!You are in a tough spot right now trying to decide whether or not you should get your child a helmet! I debated many nights over whether or not to band my daughter. We decided to as my daughter's case was severe. One of our group moderators, Niki is also from your Philadelphia area - her very cute twins are our front page stars! I'll let her tell you about her STARband story. She had a very knowledgable (and handsome, hehe, inside joke!) orthotist who treated her twins. The key to having success with these bands is a knowledgable orthotist with good experience. If you do decide to go w/a STARband be sure to ask lots of questions inquiring about his/her experience in treating plagio kids with their band. Ask for before & after photos of patience as well as references. Your daughter is at a great young age to begin with a band if you decide to go that route. Especially if her case is considered mild you will most likely get good & fast improvement.In the mean time, you can try repositioning her to keep her off her flat side. Check out this website for helpful repositioning tips. You might also want to check out the "questions for the Dr" section in the webpage. There's also a list of questions for the orthotist that you might want to print IF you decide to band your daughter.www.plagiocephaly.org/support - you can also check out "compare some cranial orthosis" section to compare the DOCband vs. the STARband. Most children adjust to wearing their helmets just fine. They usually sweat a lot for the first couple of weeks, but after their body temp adjusts to the band, the sweating diminishes. If you have air cond. in your home, I'm sure she'd do fine with the band over summer.Welcome again......please keep us updated on your decision. Good luck!Debbie Abby's mom DOCGradMI> Hello everyone,> > I am new to this group and since you all seem so knowledgeable, I'd > like to ask a few questions. I am debating on getting a helmet for > my 5 month old daughter. I took her to a neurosurgeon who said her > condition was mild and that she didn't need a helmet. However, it > seems like many doctors make these statements and I'm concerned that > if I don't go ahead with a helmet then I'll regret it in the future. > I just found out that she has torticollis - none of her doctors ever > mentioned this. Fortunately I have a friend who is a physical > therapist who diagnosed her. There is not a D.O.C. clinic in my area > (I live in the suburban Philadelphia area) so we will most likely go > with the Star Band. Does anyone know if one helmet is better than > the other? Also, since summer is approaching, will it be extra > difficult for my daughter to adjust to having this helmet on her > head? > > Thanks for any input you have.> > For more plagio info

[Guest guest]

-

Hi! My son was 5 months old when he was banded in February. It is

a great time to start with a band if you decide to go for it. We

have seen amazing improvements. We were originally bracing for the

possibilty of 2 bands. We just got great news today that since we

started early, he will not need a second band and will probably done

in about 4 weeks (of course that depends on how well he grows)!

Niki had an STARBand orthotist in Philly that she really seems to

have a crush on, so I'm sure she will chime in here with some info.

My personal opinion is that there is no harm in seeing an orthotist

for a consult to get another opinion.

Good luck in your decision!

Dane's mom (DOC Band 2/14)

> Hello everyone,

>

> I am new to this group and since you all seem so knowledgeable,

I'd

> like to ask a few questions. I am debating on getting a helmet

for

> my 5 month old daughter. I took her to a neurosurgeon who said

her

> condition was mild and that she didn't need a helmet. However, it

> seems like many doctors make these statements and I'm concerned

that

> if I don't go ahead with a helmet then I'll regret it in the

future.

> I just found out that she has torticollis - none of her doctors

ever

> mentioned this. Fortunately I have a friend who is a physical

> therapist who diagnosed her. There is not a D.O.C. clinic in my

area

> (I live in the suburban Philadelphia area) so we will most likely

go

> with the Star Band. Does anyone know if one helmet is better than

> the other? Also, since summer is approaching, will it be extra

> difficult for my daughter to adjust to having this helmet on her

> head?

>

> Thanks for any input you have.

>

>

[Guest guest]

Hi and welcome to the group! Its nice to see another Philly

area mom here!

Your situation sounds so familiar, as a lot of us have been in your

shoes. My twins, Kaylie and Danny, were diagnosed as mild plagio and

mild/moderate brachy respectively. We took them to a neuro at St.

's Hospital for Children. At six months, our neuro

advised us to continue with aggressive repositioning, and to come

back a month later. During that month, we did the best that we could

with repositioning, but it was very difficult since the twins were

more mobile at this point. We did see *some* improvement, but not

enough to make me feel that this was the right path for us. When we

returned to the neuro, he told us the twins were mild and did not

need bands, and that we would never find anyone to cast them. I felt

crushed, I had been doing everthing I could to fix this on my own and

it wasn't going away. Its not that I loved the idea of having my

babies in bands, but I hated the thought of any *possible*

complications to arise further down the road from

the plagio. I presented my neuro with all the info I could find

online, with the majority of it coming from this group. I have to

say, that as frustrated as I was with my neuro, I am thrilled that we

had him. He flat out said that he will never go against a parents

wishes, and he wrote out the prescription for the STARbands

accompanied by a letter of medical necessity.

I was very nervous going with a STARband because I had heard so much

more about the DOCband. And as you know, the closest clinic is in

Paramus, NJ, which was too far for me to really think of as an

option. If it was just the twins and I going, I might have done it,

but I have 2 other kids which would have made that drive a

nightmare. But I was very fortunate to get a wonderful ortho (and

yes, I also happened to think he was a nice peice of eye candy!) who

had 20 years of experience under his belt with treating babies with

helmets. We went to Harry J. Lawall & Son. Orthotics and

Prosthetics, and our ortho was Bud Lawall (the son in Harry J. Lawall

& Son) I don't know what area you are in, but Lawall has a few

locations in the tri-state area. In Pa, they are located in Reading,

Willow Grove, Newtown Square, and their main office in Philly. I can

only tell you what my experience has been with the Philadelphia

office, and I have nothing but rave reviews for it. Everyone there

was very knowledgeable and friendly, even if Bud had a waiting room

full of people, he would sit and answer all my questions until I was

satisfied with the answers. I know I must sound like I work for them

or something with how much I gush over them, but I am just so happy

with our whole experience.

In closing, I just want to say, go with your instincts. If you feel

that your daughter's head is mild enough to not need the band, that

is wonderful!! But if you have any doubt in your mind, keep pushing

until you get what it is that you want. Be sure to have your

daughter's tort addressed. I am sure our one moderator, , will

give you plenty of advice on tort.

Good luck to you , be sure to let us know what you decide. If

I can be of further help with names in the Philadelphia area, feel

free to email me at either niki_jay175@... or

IrishEyes175@....

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Hello everyone,

>

> I am new to this group and since you all seem so knowledgeable, I'd

> like to ask a few questions. I am debating on getting a helmet for

> my 5 month old daughter. I took her to a neurosurgeon who said her

> condition was mild and that she didn't need a helmet. However, it

> seems like many doctors make these statements and I'm concerned

that

> if I don't go ahead with a helmet then I'll regret it in the

future.

> I just found out that she has torticollis - none of her doctors

ever

> mentioned this. Fortunately I have a friend who is a physical

> therapist who diagnosed her. There is not a D.O.C. clinic in my

area

> (I live in the suburban Philadelphia area) so we will most likely

go

> with the Star Band. Does anyone know if one helmet is better than

> the other? Also, since summer is approaching, will it be extra

> difficult for my daughter to adjust to having this helmet on her

> head?

>

> Thanks for any input you have.

>

>