May 01, 2010
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September 21, 2006
Jacob's 3rd Year
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
September 27, 2005
Jacob Is Getting Bigger
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
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
March 16, 2005
Legislation concerning insurance coverage of helmets/bands
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)
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)
February 16, 2005
Still here.
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
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
October 16, 2004
BC/BS IL lawsuit update and contact info
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)
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)
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)
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!!
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
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
April 27, 2004
Plagiocephaly on the Brain
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
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
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