Let me introduce ... and ask questions!!!!!

[Guest guest]

Karyn,

Welcome to the group - I am glad that you found us!! Thank you for sharing

your story - it is nice that your family ped was willing to diagnose the

condition and recommend treatment. Many of us here had to fight tooth and

nail to get a referral!

It is AWESOME that you have already seen improvement - that has got to be

encouraging.

Unfortunately I cannot answer any of the questions you had, but I feel

certain that you will get some responses from other members. We are a diverse

group!

It's good to have you in the group!

Marci (Mom to )

Oklahoma

[Guest guest]

Hello ... my family and I live in Nova Scotia, Canada and our nearly

9 month old daughter, , has been wearing her helmet for a

month +.

was born with a misshapen head due to being pressed against

my pelvic bone for 29 hours during delivery. She had IUGR

(intrauterine growth retardation) during the pregnancy and was small

for gestational age - but was born at a healthy 6 lbs. The IUGR

created some complications during labor that resulted in her head and

my hip both being " knocked out of whack. " I am curious if there is

any correlation between the IUGR condition and instances of

plagiocephaly. Are there any other parents who have had a similar

experience?

In hindsight we also think that Kat had a mild case of torticolis.

She and I were both treated by a chiropracter - me for my hip and her

for her neck - when she was 4 weeks old. We brought her to the

chiropractor because she was very fussy and we thought it was colic

(a friend recommended chiropractic treatment). The fussing reduced

considerably and she slept much better after her neck was worked on.

She had 3 visits. Now, knowing much more about plagiocephaly and

related conditions, we think that it was mild, undiagnosed

torticolis.

's head shape has been monitored by our family doctor since

birth and when she reached six months of age it was determined that

it wasn't going to correct on its own. We then started a frustrating

series of doctor visits here in Nova Scotia to learn that there is no

one who will treat plagiocephaly in the province. If the baby

doesn't require surgery then nothing is done.

Since we are actually a US Navy family on an exchange here in Nova

Scotia, we had access to medical treatment in the US. is a

patient at the Dartmouth-Hitchcock Medical Center in Hanover, NH. It

requires us to travel on a regular basis, which is getting very

expensive. On the positive side, she showed improvement in the first

week of wearing her helmet and now at nearly 5 weeks her head is

becoming very round. We couldn't be more thrilled.

I have a few questions that some of the other parents may be able to

help me with:

- are travel expenses tax deductible?

- do any airlines provide discount fares for medical treatment?

- are there any doctors in Quebec or Ontario who treat plagiocephaly?

We are being asked by people who have children or know of other

babies who probably should be wearing helmets too.

I am so glad that this group is here.

Thank you very, very much.

Karyn &

[Guest guest]

Hello Karyn, and welcome to the group!

I have a few questions that some of the other parents may be able to help me with:- are travel expenses tax deductible?- do any airlines provide discount fares for medical treatment?- are there any doctors in Quebec or Ontario who treat plagiocephaly?

Travel expenses are tax deductible and there are ways to get cheap air fares!!! Go to http://www.plagiocephaly.org/support/traveling_for_treatment.htm for tips.

There are 2 facilities in Ontario that provide helmets. One at the Sick Kids hospital in Toronto, and one in Ottawa. I don't have any #'s for Sick Kids, but the clinic in Ottawa is (613)737-7350. I know the Ottawa band is similar to the DOC Band (maybe a STARband?), but I don't know anything about the TO helmet. The STARband is also an option. If you can find a doctor to write a prescription, and and orthotist to take on the task, then treatment can be available locally. If taking this route, it is important to interview the orthotist and ask lots of questions. Make sure this person is willing to take this treatment seriously, and learn all that s/he can, otherwise treatment can fail. Go to www.orthomerica.com for more info.

There are also DOC Bands available in Alberta, and another helmet program in Vancouver.

Glad you found us! I hope I've been of some help!

Kendra in CanadaFor more plagio info, visitwww.plagiocephaly.org/support...

----- Original Message -----

From: karynpeterson@...

Plagiocephaly

Sent: Thursday, March 22, 2001 10:49 AM

Subject: Let me introduce ... and ask questions!!!!!

Hello ... my family and I live in Nova Scotia, Canada and our nearly 9 month old daughter, , has been wearing her helmet for a month +. was born with a misshapen head due to being pressed against my pelvic bone for 29 hours during delivery. She had IUGR (intrauterine growth retardation) during the pregnancy and was small for gestational age - but was born at a healthy 6 lbs. The IUGR created some complications during labor that resulted in her head and my hip both being "knocked out of whack." I am curious if there is any correlation between the IUGR condition and instances of plagiocephaly. Are there any other parents who have had a similar experience?In hindsight we also think that Kat had a mild case of torticolis. She and I were both treated by a chiropracter - me for my hip and her for her neck - when she was 4 weeks old. We brought her to the chiropractor because she was very fussy and we thought it was colic (a friend recommended chiropractic treatment). The fussing reduced considerably and she slept much better after her neck was worked on. She had 3 visits. Now, knowing much more about plagiocephaly and related conditions, we think that it was mild, undiagnosed torticolis.'s head shape has been monitored by our family doctor since birth and when she reached six months of age it was determined that it wasn't going to correct on its own. We then started a frustrating series of doctor visits here in Nova Scotia to learn that there is no one who will treat plagiocephaly in the province. If the baby doesn't require surgery then nothing is done.Since we are actually a US Navy family on an exchange here in Nova Scotia, we had access to medical treatment in the US. is a patient at the Dartmouth-Hitchcock Medical Center in Hanover, NH. It requires us to travel on a regular basis, which is getting very expensive. On the positive side, she showed improvement in the first week of wearing her helmet and now at nearly 5 weeks her head is becoming very round. We couldn't be more thrilled.I have a few questions that some of the other parents may be able to help me with:- are travel expenses tax deductible?- do any airlines provide discount fares for medical treatment?- are there any doctors in Quebec or Ontario who treat plagiocephaly? We are being asked by people who have children or know of other babies who probably should be wearing helmets too.I am so glad that this group is here.Thank you very, very much.Karyn &

[Guest guest]

Thanks so much for the info. We have had a real uphill battle

regarding finding treatment. It seems to be a familiar refrain with

many of the other parents as well.

Next we start with the insurance company for coverage and we are

dealing with the US Embassy in Ottawa to see if they will reimburse

us for some of the travel involved. Whether we stayed in Canada or

went to the States it was going to mean a lot of long trips no matter

what.

Everyday I look at my daughter and her improvement and I know that

all the hassle has been worth it.

Thank you.

Karyn