Plagiocephaly -- To Kathy E.

[Guest guest]

Kathy (and others)

I just joined the list. I see that you have a grandson with

plagiocephaly and apraxia. Do you have any documentation that the

two are related? My 2-year old still has moderate skull asymmetry

even after agressive repositioning (we did not get a helmet because

our insurance refused because the doctor would not write a letter of

medical necessity, citing the condition as " strictly cosmetic " ).

is going for his two-year checkup tomorrow and will likely be

scheduled for a speech evaluation soon after that.

We saw multiple doctors about ' head, ALL of whom told us that

there would be no future developmental or functional problems

related to his headshape. Now I am not so sure.

Thanks for your help,

mom to , 2 years old (as yet undiagnosed speech delay,

plagiocephaly)

Indiana

[Guest guest]

,

I am so sorry to hear about your doctor thinking Plagio is only

cosmetic. The AMA defines cosmetic as changing a normal body part.

Plagio is not normal, the Bands are corrective.

Non-treated plagio has been linked to migraine headaches, difficulty

chewing, TMJ and respiratory and vision problems as well as increased

risk of middle ear infections and the psychological problems involved.

R.I. and S.K.Clarren, in paper published in the journal

Pediatrics, examined links between developmental delay and

deformational plagiocephaly and concluded that " infants with

deformational plagiocephaly comprise a high-risk group for

developmental difficulties presenting as subtle problems of cerebral

dysfunction dureing the school-age year. "

link below

http://pediatrics.aappublications.org/cgi/content/full/105/2/e26

I too did aggressive repositioning and receive some nice results but

not any correction on her ears. I am still fighting with the

insurance company to pay for the band. My Ped didn't Rx the band, I

had to go to a neurosurgeon on my own. I have BC/BS PPO so I didn't

need a referal. Repositioning is only helpful up to about 6 months

and if your little one has Torticollis on top of that Repositioning

may be impossible.

There is a group for untreated plagio I can't say if it is good or

not but here is the link

OlderPlag/

MY DH has plagio caused by torticollis And no developmental issues.

My DD, has Tort & plagio too and is entering into EI with a 37%

delay.

MY DS, has apraxia and DSI but no plagio.

Here are a few great site.

CAPPS

a Non-Profit organization that helps families that have a child with

Positional Plagiocephaly or Craniosynostosis.

http://www.cappskids.org

Cranial Technologies

Information on plagio & their DOCband

http://www.cranialtech.com/

FDA Approval

FDA approval of Orthotic helmet (DOC Band)

http://www.fda.gov/ohrms/dockets/98fr/073098b.txt

Great starting point if you're just beginning your research into

Positional Plagiocephaly.

http://www.plagiocephaly.org/

Shell Game

The reimbursement shell game

http://www.angelfire.com/ma4/plagiocephaly/ShellGame.pdf

Court ruling against CIGNA to pay up!!

http://laws.lp.findlaw.com/4th/011705p.html

Orthoseek Congenital Muscular Torticollis

good explanation of CMT

http://www.orthoseek.com/articles/congenmt.html

General information

Congenital Muscular Torticollis (Wry-neck) - by DynoMed.

Torticollis Hub

many links on tort information, treatments, and case studies.

http://www.genomelink.org/torticollis/

Wonderful groups formed by parents.

Plagiocephaly/

PositionalPlagioSupport/

Torticolliskids/

Take Care,

Heidi-SAHM to 8 (NT) 5 (DSI, Apraxic) 20 months

(VUR, Less than 5 words/just entering into EI speech 2/wkly & PT

1/wkly, Torticollis/Plagiocephaly - DOCBandit Grad, low weight 19lbs,

poor appetite/ can't process frutose but benigh)

[Guest guest]

Dear ,

I read the same article from the journal " Pediatrics " that Heidi

posted, and posted about it also a few days or weeks ago. The

condition is not strictly cosmetic, it is quite clear from the

data--however in defense of the physicians who told you it was, (1) the

frequency of this condition has increased dramatically due to the " back

to sleep " campaign to prevent SIDS--it's like a new epidemic, and (2),

even though it does have apparent neurological consequences, it is

uncertain, and perhaps unlikely, that the helmets help prevent those

consequences. Although the helmets definitely do help cosmetically,

according to the article:

" The use of helmet therapy did not seem to affect the rate of

developmental delay. A total of 44% of the delayed patients had worn

helmets, whereas a total of 42% of the nondelayed patients had worn

helmets. The sample seemed large enough to conclude that if the

additional pressure on the head from the helmet contributed to the

delay, it must be a very small part of the variance. " --same article in

Pediatrics.

another quote:

" The families reported that 25 of the 63 children (39.7%) with

persistent deformational plagiocephaly had received special help in

primary school including: special education assistance, physical

therapy, occupational therapy, speech therapy generally through an

Individual Education Plan. Only 7 of 91 siblings (7.7%), serving as

controls, required similar services (chi-sq = 21.24). Delays could not

be specifically anticipated at the time of the diagnosis of

deformational plagiocephaly from any simple set of factors including

treatment with helmet therapy, although effected males with reported

uterine constraint were at the highest risk for subsequent school

problems [emphasis mine-KRE].

Conclusions.  Infants with deformational plagiocephaly comprise a

high-risk group for developmental difficulties presenting as subtle

problems of cerebral dysfunction during the school-age years. There is

a need for additional research on the long-term developmental problems

in infants with deformational plagiocephaly. plagiocephaly, facial

asymmetry, torticollis, developmental delay. "

Now this article was published in PEDIATRICS Vol. 105 No. 2 February

2000, only one year and a month before Benny's birth. This is a very

well-respected, peer-reviewed medical journal. However, such

information requires much more time than that to filter through to

affect medical practice, and the conclusion " there is a need for

additional research " would leave plenty of opening for someone to say

it is not yet firmly established. However, we have more than enough

kids on this list with torticollis and/or plagiocephaly to make one

have very well-founded suspicions, even if we didn't have the article

above. I tried very hard to encourage my son and daughter-in-law to

get helmet therapy for Benny, to the point of promising to pay for any

costs not covered by insurance; however, after one visit to a NP at the

Univ. of MI, who gave them a prescription, they just didn't carry

through. Now my son has read the article and feels less guilty that he

didn't push through to get the helmet, even though Benny has some

remaining head asymmetry. It probably would have helped his skull and

appearance, but not necessarily his brain function.

Peace,

Kathy E.

On Dec 9, 2003, at 5:01 PM, girlibrarian wrote:

> Kathy (and others)

>

> I just joined the list. I see that you have a grandson with

> plagiocephaly and apraxia. Do you have any documentation that the

> two are related? My 2-year old still has moderate skull asymmetry

> even after agressive repositioning (we did not get a helmet because

> our insurance refused because the doctor would not write a letter of

> medical necessity, citing the condition as " strictly cosmetic " ).

>

> is going for his two-year checkup tomorrow and will likely be

> scheduled for a speech evaluation soon after that.

>

> We saw multiple doctors about ' head, ALL of whom told us that

> there would be no future developmental or functional problems

> related to his headshape. Now I am not so sure.

>

> Thanks for your help,

>

>

> mom to , 2 years old (as yet undiagnosed speech delay,

> plagiocephaly)

> Indiana

>