plagiocephaly and a vp shunt?

January 5, 2006

Hi All,

I found this group through the plagiocephaly.org website and was

hoping to find some information to help my son.

Thorston was born on March 25th. He was 2 months premature, had

seizures, bleeding in and around the brain, spinal menangitis and

other problems. They told us that if he lived, he'd probably have

severe physical and mental handicaps and we were told to expect the

worst and hope for the best. Well... we got the best. Thorston's

neurologist gave us the best news that we could have ever asked for

just before Christmas. She said that at 9 months of age he

was " normal " which for us was the miracle that we've been praying

for.

The only remaining issue that we've complained to the doctors about

is the flatness on the left side of his head. When he was 6 weeks

of age he had a ventricular-periteneal shunt put through the right

side of his skull and into his brain. Then a month later he had

another surgery to revise the shunt, which meant cutting his scalp

open again and another big long 'frankenstein' looking row of

stitches on the side of his head.

Due to the two surgeries he has gotten into the habit of lying on

the left side of his head (to avoid laying on the stitches) and now

it's almost impossible to get him to lay on the other side.

His doctors have all dismissed the 'flat spot' as no big deal, or

have told us that helmets are used to 'fix' the problem but since he

has a shunt one doctor said that he wouldn't be a candidate for a

helmet.

It's gotten VERY noticable now, his ear is shifted forward quite a

bit, his skull is flat on one side and bulging on the other, and

I've even noticed a lot more earwax in the ear on the flat side so

I'm worried more about hearing and ear infections even more than

what his skull looks like.

I've tried repositioning and propping him up on the other side when

he's asleep, to get him to turn his head the other way, but he wakes

up and wiggles and squirms until he can turn his head back or until

he can lie flat again, then goes back to sleep.

Has anyone else dealt with plagiocephaly in a baby with a shunt?

Can anyone offer any advice?

- Debbie

January 5, 2006

Hi All,

I found this group through the plagiocephaly.org website and was

hoping to find some information to help my son.

Thorston was born on March 25th. He was 2 months premature, had

seizures, bleeding in and around the brain, spinal menangitis and

other problems. They told us that if he lived, he'd probably have

severe physical and mental handicaps and we were told to expect the

worst and hope for the best. Well... we got the best. Thorston's

neurologist gave us the best news that we could have ever asked for

just before Christmas. She said that at 9 months of age he

was " normal " which for us was the miracle that we've been praying

for.

The only remaining issue that we've complained to the doctors about

is the flatness on the left side of his head. When he was 6 weeks

of age he had a ventricular-periteneal shunt put through the right

side of his skull and into his brain. Then a month later he had

another surgery to revise the shunt, which meant cutting his scalp

open again and another big long 'frankenstein' looking row of

stitches on the side of his head.

Due to the two surgeries he has gotten into the habit of lying on

the left side of his head (to avoid laying on the stitches) and now

it's almost impossible to get him to lay on the other side.

His doctors have all dismissed the 'flat spot' as no big deal, or

have told us that helmets are used to 'fix' the problem but since he

has a shunt one doctor said that he wouldn't be a candidate for a

helmet.

It's gotten VERY noticable now, his ear is shifted forward quite a

bit, his skull is flat on one side and bulging on the other, and

I've even noticed a lot more earwax in the ear on the flat side so

I'm worried more about hearing and ear infections even more than

what his skull looks like.

I've tried repositioning and propping him up on the other side when

he's asleep, to get him to turn his head the other way, but he wakes

up and wiggles and squirms until he can turn his head back or until

he can lie flat again, then goes back to sleep.

Has anyone else dealt with plagiocephaly in a baby with a shunt?

Can anyone offer any advice?

- Debbie

January 6, 2006

Debbie--

I do not have personal experience with both a VP shunt and plagio. However

my daughter wore a Starband by Orthomerica for her plagio. They have

several other plagio related products on their website. Two specifacally

mention being appropriate for patients with shunts. Here are the links to

those products. Have you been seen by a plastic surgeon. Sometimes it

seems that plastic surgeons are more open to banding babies than either

neurosurgeons or pediatricians (in my opinion from antedotal stories). I

don't know whether CranialTechnologies uses their DOC band on children with

VP shunts.