Plagiocephaly On The Brain

This blog has moved

2010-05-01T02:13:00.001-04:00

This blog is now located at http://plagioonthebrain.blogspot.com/.
You will be automatically redirected in 30 seconds, or you may click here.

For feed subscribers, please update your feed subscriptions to
http://plagioonthebrain.blogspot.com/feeds/posts/default.

Jacob's 3rd Year

2006-09-21T13:53:00.000-04:00

Well, recently we shaved Jacob's head. All I can relate the look of his head to is a Star trek Ferangie. I really wished we had continued his treatment, but at this point Im just glad his chances of having real problems from his plagiocephaly is over.

Now his hair is growing back, but you can still see the front-top of his head bulging up. Boy he's a good kid, I dont think that any of this will effect him much, I wouldnt think.

-Jyn

Jacob Is Getting Bigger

2005-09-27T13:27:00.000-04:00

Jacob is 2 now, and recently we found out he's going to be a big brother. What does this mean? Plagiocephaly prevention, baby. He still has a bit of obviouse malformation of his head because of the fact we were unable to complete his helmet process, but at this time- it's only aesthetic rather than physically capable of causing problems.

I WILL say that one of the drawbacks from nexk weakness do to his plagiocephaly, was the re-occuring head bonking onto the floor when he was learning to walk. This is something my previous 3 children never struggled with as much as Jacob did.

Sometimes I was afraid to take him out because he had humoungus knots on the front of his head from constant falling over while trying to walk.

Overall, I havent noticed any particular brain damage and everything has, since, righted itself. *big grin*
-Jyn

Legislation concerning insurance coverage of helmets/bands

2005-03-16T15:49:00.000-05:00

Email. I recieved:

Hello,

I would like to share some exciting legislative news posted by
plagio parent David on the Cranial Tech message board. A bill has
been proposed in the Florida Senate/House that would require
insurance companies to cover helmets/bands as treatment for
congenital craniofacial anomalies as authorized by your physician.
If we have any Florida members here at the group, please contact
your senators and representatives in support of this bill to help it
get passed. Thank you so much to all of our Florida members who are
able to support this bill and get the word out to other Florida
plagio parents.

I have added the link to this Florida Senate Bill #560 in the
Links/Insurance/Legislation folder. Here is the link (if the link
is more than one line long, you'll need to copy and paste the entire
link to your address bar to get directed correctly.)

Florida Senate Bill #560 "Caleb Dries Act" Insurance Coverage of
Helmets/Bands (2005)
Please contact your Florida House Representatives and Senators to
get this bill passed. This bill requires individual health insurance
policy or group health insurance policy to cover services needed to
treat congenital craniofacial anomalies as authorized by physician;
requires contract by HMO to cover services needed to treat said
anomalies as authorized by physician.
http://www.flsenate.gov/session/index.cfm?
BI_Mode=ViewBillInfo&Mode=Bills&SubMenu=1&Year=2005&billnum=560

If any group members have any info on other pending legislation in
other states, please post or email me. I would love to include that
information here at the group site.

Take care,

Christie (Mom to Repo'd Remy)

Still here.

2005-02-16T12:56:00.000-05:00

Weve been moving about, but I will try and post some new pictures of Jacob here soon.

Unfortunately, we were unable to complete the helmet process, and his head is still a bit malformed. Im glad we got most of it taken care of early on, but Its still strange to feel his head in my arms and feel the bony left side.

-Jyn

BC/BS IL lawsuit update and contact info

2004-10-16T23:25:00.000-04:00

October 5, 2004 11:15:45 PM MDT
Hi,

Courtesy of a group member at the CappsKids website, we now have an
update and contact info on a pending lawsuit against BC/BS of IL.
Here is a link to a short news article on the lawsuit (if the link
is over one line long, please paste the entire link to your addr bar
to get directed correctly):

Devine Files Suit Against Blue Cross and Blue Shield for Denial of
Benefits (DOCband)
This webpage is a cached webpage with highlighted search terms, so
it's not pretty to look at, but it is a news release regarding a
lawsuit filed by Cook County IL Starte's Attorney Richard Devine.
The lawsuit charges BCBS of IL with violating the Illiniois Consumer
Fraud Act in its denial of coverage for the DOCband on the ground of
being investigational and not medically necessary. Any update on the
status of this lawsuit would be appreciated!
http://216.239.39.104/search?q=cache:TJPLrc-
vA9AJ:www.statesattorney.org/aweb/preshmo1.htm+Illinois+Cook+County+C
ircuit+Court+filed+Devine+Blue+Cross&hl=en

Lisa has posted that this lawsuit is going to trial on October 26th,
2004. If anyone has been denied coverage of a band/helmet by BC/BS
of IL, PLEASE CONTACT Assistant State Attorney Chris Johnson with
the details of your situation to see if you can be added to the
lawsuit to strengthen their case. Chris Johnson can be reached at:
(312-603-8620).

Good luck, and I'd love to hear from any group members that do
participate in this lawsuit - please keep us updated!

Christie (Mom to Repo'd Remy)

Plagio Prevention Study Participation Opportunity (Fla)

2004-10-16T23:24:00.000-04:00

September 26, 2004 6:21:02 PM MDT

South Florida Members! I hope everyone is braving the hurricane
situation safely and well. I posted about this clinical study
opportunity a few weeks ago, but I know that the weather situation
may have really hampered anyone noticing it, or being able to
participate. I'm posting about it here again for your consideration:

Do you or anyone you know have a brand new baby, and are interested
in participating in a study on plagio prevention? A unique
opportunity to participate in a large clinical trial of a new
product to help prevent plagio has been brought to the attention of
the group, if any of you are interested.

Dr. Stelnicki has has invented the NightForm*, a nighttime
positioning device designed to prevent plagiocephaly. Some details
about the NightForm are:

1. It's the only clinically tested re-positioning device
2. It's received a 510(k) clearance.
3. It's much larger than the typical "re-positioning device," most
of which are actually designed to keep baby in a back-sleep position
rather than to permit re-positioning. It has the dimensions of a
bassinet mattress, so it can replace that in a bassinet, or lay atop
a crib mattress.
4. It uses two 30/60/90 degree triangular wedges, which secure to
the mattress by way of mechanical fasteners and a retaining cloth.
Parents re-arrange the triangles nightly to create ten different
back-sleep positions for baby.
5. Website is in development www.NightForm.com

For anyone who might be interested and geographically close enough
to take advantage of this offer, and also be willing to contribute
their time to helping the cause of preventing plagio, here are the
details about the clinical trials (who would qualify, how they are
conducted, contact info, etc.);

1. Enrollees need to be under 1 month of age at their first
appointment, and in good general health.
2. The trial will last until approximately when the infants can
roll around themselves, usually at 4-5 months.
3. Enrolled patients will need to visit Dr. Stelnicki's office in
Hollywood once a week initially and then once every two weeks for
the duration of the trial (Main Office, 1150 North 35th Avenue,
Suite 490, Hollywood, FL. 33021.) The visits will be for head
measurements and photographs, generally under the supervision of a
PT. (They will see Dr. Stelnicki, or his partner, Dr. Schnitt, but
most of their time in the office will be with the PT).
4. Half of the enrollees will be given the NightForm mattress and
half will be assigned to a control group that simply follows the
Academy of Pediatric's SIDS guidelines. Enrollees will be randomly
assigned to one group or the other. (Patients need to be randomly
asssigned for this trial to be valid. Random assignment will occur
via coin toss) For those parents who might be dissapointed to be in
the control group (i.e., who don't get the mattress) they might be
reassured to know that their infant's skull development will
be closely monitored by professionals, and - should they show signs
of DP - they'll be removed from the trial and referred for treatment.
5. Parents wishing to participate in the trial should call 1-800-
755-7660. Again, parents should select themselves based upon their
child's age ( <1 month) and their willingness to visit the Hollywood
office every week or two weeks for 4 months.

Thank you so very much to anyone who would be willing to participate
in the NightForm Clinical trial!

Take care,

Christie (Mom to Repo'd Remy)

I know it's been a while!!

2004-10-16T23:20:00.000-04:00

Well, Jacob is now 1 year 1 month old and he is doing great! You can see him here: Jacob's Album

My husband lost his job at the end of May JUST before we were going to have to cast for a new helmet. Unfortunately, insurance okay came through a few days late and we were unable to get a new one.

His head still shows the flattening, although it isnt ANYWHERE near where it had been months ago. The helmet was wonderful, and If you are considering whether or not it's worth it? It is. My son will have a better chance in life, free from potential side effects and problems his posistional plagiocephaly would have caused, by getting the helmet.

I am enclosing a few emails I have recieved from Dr. Stelniki's office (Miami, FL).

I wish everyone the best!
-Jyn

Plagiocephaly on the Brain

2004-04-27T09:11:00.000-04:00

Sorry it's been a while... lots going on...
Looks like Jacob has already outgrown his helmet and needs a new one. I still cant believe it.

I need to post some pictures of his womderful Captain america job I did on his helmet too at some point...

-Jyn

Got our Helmet

2004-03-22T21:01:00.001-05:00

Well, we got our helmet about a 4 days ago. We have been very busy with company, so I havent had the chance to throw anything up here until tonight. New pictures added. Click on the menu above.

Plagiocephaly on the Brain

2004-03-09T18:52:00.000-05:00

Wow! What a trip!
I couldn't believe that it was $1 a tollbooth down the pike to Miami. But we eventually got there! We had his head measured and photographed, and then...
their casting patient DIDN'T SHOW UP!

So, we were able to cast today! No going back down to Miami again!
YAAAAY!
Pictures to come!!!
-Jyn

2004-03-09T10:13:00.000-05:00

Well, our insurance came through.
Today, we get his head sized and then Thursday he gets his casting.

I'm hoping to take lots of pictures to share!

Plagiocephaly on the Brain

2004-03-01T19:22:00.000-05:00

Do you have a story relating to Plagiocephaly? Please contact me! I am interested in any information and cases I can find!

Positional Plagiocephaly Petition

2004-02-28T10:54:00.000-05:00

Positional Plagiocephaly Petition
To: American Academy of Pediatrics Task Force on Infant Positioning and SIDS, and The American Board of Pediatrics

To: The American Academy of Pediatrics Task Force on Infant Positioning and
SIDS

John Kattwinkel, MD, Chairperson
John G. Brooks, MD
Maurice E. Keenan, MD
Michael Malloy, MD

And

To: The American Board of Pediatrics,

Prior to the 1992 Implementation of the Back to Sleep Campaign, it was estimated that 1 in 300 babies had varying degrees of cranial asymmetry {abnormal head shape}. As of today, it is estimated that 1 in 60 babies have a cephalic disorder, known as Positional Plagiocephaly. The numbers are increasing in epidemic proportions globally. We respect the American Academy of Pediatrics commitment towards the quality of health for our children. However, we as parents feel the Task Force on Infant Positioning and SIDS has not fulfilled its duties with educating the public or the medical establishment on the complexities of this campaign.

The American Academy of Pediatrics' stand has been a supine sleeping position to reduce the risk of Sudden Infant Death Syndrome. The AAP has only recently released a statement of the importance of "tummy time." The recommendations in this statement do not indicate an effective course of treatment - or serve as standard medical care - for Deformational or Positional Plagiocephaly.

Deformational and Positional Plagiocephaly is characterized as follows:

PLAGIOCEPHALY- significant flattening of the right or left skull, typically accompanied by ear misalignment and facial asymmetry

SCAPHOCEPHALY - Long and narrow head shape

BRACHYCEPHALY - shortening of the head due to flatness,increased head height, often accompanied by an under bite.

Suggested Manifestations of Cranial Asymmetry are as follows:

torticollis- Face turns to the right or left with a head tilt
Misaligned ears,
Nose pushed to one side,
Unilateral cheek prominence,
Bossing of the forehead,
One eye appearing larger than the other.

Head shape abnormalities are believed to cause:

Migraines,
Temporomandibular Joint {TMJ} Syndrome,
Eyesight problems, and
Severe Psychological Consequences

We as parents will continue to place our children in a supine sleeping position. We are asking the American Academy of Pediatrics to implement a policy requiring our children's doctors to carefully evaluate every child at birth for cranial abnormalities, and follow up at every well-baby checkup thereafter. We are asking the American Board of Pediatrics to offer various options for treatment when these abnormalities are present.

The phrase, "It will round out,” is simply not true in most cases. Aggressive repositioning is not always successful. We as parents would like to be given a referral to an educated specialist, in a timely manner. The ideal timeframe for maximum correction is between 3 and 6 months. We as parents do not want babies with perfectly round heads. What we expect is recognition and response to the rise of documented disorders related to the “Back to Sleep” campaign.

Sincerely,

The Undersigned

Sincerely,
(YOUR NAME HERE) click the above link to sign

Nonsynostotic Plagiocephaly. Cranial Technologies' centers and clinic locations for diagnosis and treatment

2004-02-25T08:04:00.000-05:00

Nonsynostotic Plagiocephaly (Abnormal Head Shape, Flat Head Syndrome). Cranial Technologies' centers and clinic locations for diagnosis and treatment of plagiocephaly with the DOC Band? (cranial orthosis, headband, helmet, molding helmet)

I think it is very interesting how this special DOC brand helmet isn't available anywhere in the western United states. Hmmm, also considering we JUST moved from Oregon, I think we're pretty lucky.

"This is my son, Bob...."

2004-02-24T22:31:00.000-05:00

I'm considering calling Jacob 'Bob' because of his bob when he tries to look up at me laying from his belly on the floor. I already call him 'Bubuh', I guess 'Bob' wouldn't be too far off.

In the meantime I'm doing everything I can to try and keep pressure on the outstanding side of his head while waiting for insurance results.
Until then we'll...
"...just keep bobbing, just keep bobbing, just keep bobbing, bobbing, bobbing..."

Guardian Unlimited | Life | Should we be worried about babies' flattened heads?

2004-02-24T21:42:00.000-05:00

Guardian Unlimited | Life | Should we be worried about babies' flattened heads?
An interesting article on plagiocephaly.

Welcome to our world...

2004-02-24T16:37:00.000-05:00

Well, we are beginning the journey of Plagiocephaly repositioning. At this time we are waiting on word of whether or not our insurance will cover the cost of the helmet, so let's just keep praying and we're good to go!