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

[Guest guest]

Hello Karyn - Welcome to the group!

My name is Colleen Purcell and I live in Halifax, Nova Scotia. I was

very exicited to see someone else from Nova Scotia posting on this

site! My son Owen was diagnosed at two months with plagio and

torticollis but a later consultation with a pediatrician indicated he

had brachycephaly and not plagio. We have had a great deal of success

with repositioning and physical therapy - after almost seven months!

I can tell you though that our family doctor said plastic surgeons at

the the IWK Hospital provide helmet therapy. I also know that

treatment is available at the Sick Kids Hospital in Toronto-if you go

to their internet site there is information available in their

section on craniofacial treatments - specifically on plagiocephaly.

They also provide information on what is needed to access treatment

at the hospital.

There is a couple from Newfoundland who are members on this site and

who went to Sick Kids for treatment so they will probably be a great

source of information for you.

If you would like, you can send me an e-mail at

apurcell@.... I would love to hear from you.

Colleen Purcell (mom to Owen 08/07/00)

>

> 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]

Hi Karyn,

Welcome to the plagio site. This site has helped our family in so

many ways and I hope we can help you also.

First of all let me introduce myself and my family. Our names are

Joy & Rob Murray, we have a ten year old daughter and 1 year old twin

boys. One of our boys Zachary was diagnosed with plagiocephaly at 8

months old. We as parents knew at birth that Zachary's head was very

flat but were told it would shape on its own. He was the first twin

but he did not move very much in utreo. His brother took

all the space and left pittens for Zachary. HA!

Well finally through visiting family doctors to pediatricians to

Neurosurgeon and Neurologists our son was finally diagnosed. We then

discovered that they could do nothing for him here in St. 's,

Newfoundland so they sent us to The Toronto Sick Kids Hospital.

We went there this past January and Zachary was seen by Dr. Forest in

the Craniofacial, Plastic Surgery Department and then sent to

Orthotics for casting of the helmet. He has been wearing the helmet

now for 2 1/2 months and is doing very well.

The staff at Sick Kids are wonderful people. We visit our local

rehab center for adjustments when necessary and in April we have to

fly back to TO.

It is very costly flying back and forth but with the help of The

Mc Foundation here in Newfoundland our airfare was

covered in Jan. and hopefully it will be again in April.

This condition is very common but alot of doctors and pediatricans

don't want the bother of parents with kids with this concern. To

most they think we should consider ourselves lucky. Well like I have

said to our local peditrican, " Who are you to tell me not to worry

that when he grows hair the flattening wouldn't be noticable " . Well

the flattening was not our main concern it was his facial features

(fuller cheek on right, buldged forehead on right, ear misallignment,

and right eye slightly closing). If you know parents with kids with

plagio please tell them about the help that is available.

Within the next few weeks our local paper is printing a report on our

experience with this and with the medical help out there. We really

hope by doing this that alot of Newfoundland Parents are more aware

of this condition.

Good Luck

Joy & Rob

St. 's, NF

>

> 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]

Hi,

At Toronto Sick Kids Hospital they have a Neurosurgery Clinic and deal

with palgio. My PT is refferring my son there nope don't need a

PED or Doc referral! We should be hearing from the clininc this week.

Heres a link to some info.

Thanks

Sue

http://www.sickkids.on.ca/neurosurgref/neurosurgery%20internet.htm

and

http://www.sickkids.on.ca/

are there any doctors in Quebec or Ontario who treat

plagiocephaly?

[Guest guest]

Hey thats who is going to see a Dr. Forest at

Toronto Sick Kids I am so glad your having sucess. Gives me hope!

Thanks

Sue

> so they sent us to The Toronto Sick Kids Hospital.

> We went there this past January and Zachary was seen by Dr. Forest

in

> the Craniofacial, Plastic Surgery Department and then sent to

> Orthotics for casting of the helmet. He has been wearing the helmet

> now for 2 1/2 months and is doing very well.

> The staff at Sick Kids are wonderful people.