Question

[Guest guest]

Liz, I hope the minocycline works for you and you feel the warm thoughts and prayers I'm sending your way. I didn't realize you had a cane. Some days I could use one too.

Hope to hear soon you are much, much better. <hugs>

Bev

PS, I got my minocycline!!!--my coverage is paying for it, it is the capsule

marked "DAN" Any of you who believe in the power of prayers and positive

thinking, please say one for me tonight. : ) I am so hoping that this will

work as well for me as the plain tetracycline did. I am having to go off

the nsaid I have been on lately (desparate times, desparate measures, but it

had the same bad result as before) as it is causing so much swelling in my

ankles I can't walk for part of the day without a cane and much pain.

[Guest guest]

Ana wrote:

>> EXCEPT, for these raised, painful bumps, almost like bruises on my right

shin, which are tender and warm to the touch, and the ankle of that leg

keeps swelling quite a bit on a daily basis. <<

Hi Ana, I have had some bumps like that too for several months in a few

places. They do not to me seem to be rheumatoid nodules from what I have

seen and read of rheumatoid nodules. I suspect they are enlarged lymph

nodes, and have been meaning to ask the doctor about them because in the

last two weeks they have become larger, and more swollen and tender. RA can

affect the lymph system also, which is what I am concerned about, but it may

not be the case with you, since the doctor you saw said they are nodules. I

am on a pretty high dose of prednisone right now to keep me functioning with

the RA flare, and the bumps have gotten worse instead of better.

I think if you are not satisfied with the doctor's explanation you should

get a second opinion. Mine have developed over the last year or so since I

have been having trouble with a recurring flu-like virus and also my RA has

been flaring along with all of this. Please see someone you trust more

about this, and let us know what you find out. I hope it gets better soon

for you. Take care, Liz G.

PS, I got my minocycline!!!--my coverage is paying for it, it is the capsule

marked " DAN " Any of you who believe in the power of prayers and positive

thinking, please say one for me tonight. : ) I am so hoping that this will

work as well for me as the plain tetracycline did. I am having to go off

the nsaid I have been on lately (desparate times, desparate measures, but it

had the same bad result as before) as it is causing so much swelling in my

ankles I can't walk for part of the day without a cane and much pain.

[Guest guest]

>  They could be Rheumatoid nodules.  They

>usually show up on bony surfaces.  I have a few.  The ones under my

>heels and big toes cause me pain.  I plan to get them removed.  My

>podiatrist said they will probably come back.  I was told that they were an

>indication of a severe case of RA.  What they are all about...I'm not

>sure.  I've heard a few explanations.  One that I remember off

>hand are that they are clumps of misplaced collagen, but it seems that

>most doctors don't really know why we get them.  I hope someone will post

>who does have a good explanation.<

I had nodules on several of my finger joints that had

developed over the years. This is the second time I have

been on minocin. The first time was about two years

ago where I took it for about six months straight. During

that six months the nodules dissolved on their own and they

have not come back. I saw some literature stating that one

theory was that the nodules were little walled of areas of

mycomplasma infection which once killed by the antibiotic

are dissolved by your immune system and that's what causes

the nodules to disappear.

Vern

************************

Please disregard the link to my ISP!

http://www.bealenet.com

[Guest guest]

Hi Vern, I heard about that too. That it was the immune systems way of isolating infection. Maybe I should wait awhile to see if mine will go away too. So far after a year they are not budging.

Kimmie

Re: rheumatic Question

> They could be Rheumatoid nodules. They >usually show up on bony surfaces. I have a few. The ones under my >heels and big toes cause me pain. I plan to get them removed. My >podiatrist said they will probably come back. I was told that they were an>indication of a severe case of RA. What they are all about...I'm not >sure. I've heard a few explanations. One that I remember off >hand are that they are clumps of misplaced collagen, but it seems that >most doctors don't really know why we get them. I hope someone will post >who does have a good explanation.<I had nodules on several of my finger joints that haddeveloped over the years. This is the second time I havebeen on minocin. The first time was about two yearsago where I took it for about six months straight. Duringthat six months the nodules dissolved on their own and theyhave not come back. I saw some literature stating that onetheory was that the nodules were little walled of areas ofmycomplasma infection which once killed by the antibioticare dissolved by your immune system and that's what causesthe nodules to disappear.Vern************************Please disregard the link to my ISP!http://www.bealenet.comTo unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

> Does anyone know of a person with Parkinson's who has tried

> chelation? Here's a little info on Parkinson's...

I am familiar with this subject. To date most people doing it use

ineffective treatments due to lack of knowledge on their and their

doctor's part. After all, the problem with Parkinson's is the mercury

IN the brain so only ALA chelation is going to help.

Many neurology and toxicology textbooks do point out the close

similarity between parkinson's and mercury tox and say mercury tox

should be excluded in cases of parkinson's that are atypical.

There is some clinical evidence that other heavy metals also can cause

Parkinson's or contribute with mercury to it - The doc I work for had

a case with a Parkinson's patient who apparently is quite bismuth

toxic and got put over the edge by improper amalgam removal.

If this is relevant to someone you know, contact me privately or talk

about it on the adult-metal-chelation list.

Andy . . . . .. . . . . . . .

>

>

> " Furthermore, individuals with Parkinson's disease have much lower

> levels of detoxifying enzymes than healthy individuals, possibly

only

> about 30% of normal levels. This means that toxic chemicals in such

> individuals accumulate much more than in those with normal liver

> functions. These chemicals are commonly fat-soluble and, therefore,

> stored in lipid structures such as the brain.

>

> Aluminum greatly facilitates the passage of toxic chemicals into the

> brain. The brain is normally protected from undesirable chemicals in

> the bloodstream by a filter barrier. High aluminum levels have been

> shown to allow toxic chemicals that would otherwise be kept out to

> cross the blood-brain barrier. In addition, aluminum itself has

> neurotoxic properties. Aluminum inhibits the synthesis of important

> brain chemicals, it has the potential to block nucleic acid

> metabolism within nerve cells and to interfere with magnesium in the

> regulation of neurotransmitter receptors.

>

> The injection of aluminum salts into the fluid surrounding the brain

> initiates degenerative brain changes. There is an unusually high

rate

> of motorneurone disease and Parkinson's disease in the indigenous

> population of Guam in the Western Pacific. The soil and drinking

> water in this area is unusually high in aluminum and low in

magnesium

> and calcium.

>

> Our main intake of aluminum comes from cooking utensils, antacids,

> some baking powders, municipal water supplies and aerosol sprays.

> Encephalopathy has been clinically induced in dialysis patients

> through aluminum overload with mental deterioration and the EEG

> suggesting movement disorders.

>

> Further brain deterioration can be caused by accumulations of the

> heavy metals cadmium, lead and mercury. Of these, mercury is

> generally the greatest brain hazard, coming mainly from amalgam

tooth

> fillings. Organic mercury compounds are strong nerve poisons that

may

> kill nerve cells and cause tremors. The problem is worse with two or

> more different kinds of metal in the mouth which cause

micro-currents

> that interfere with nerve functions, and also the presence of

> different toxic metals in the brain greatly potentises their harmful

> effects.

>

> Finally, iron overload, especially in inorganic form, can intensify

> Parkinson problems. Not only have PD patients low levels of natural

> antioxidants (glutathione and superoxide dismutase) but also high

> levels of iron in the substantia nigra areas of their brains. Iron

> tends to catalyze free radical reactions that destroy dopamine-

> producing cells

> Hidden food allergies and chemical sensitivities contribute to most

> degenerative diseases. However, in Parkinson's disease the body

> generally is insensitive and does not readily react even when

> specifically testing for hidden allergies. Nevertheless, it has been

> shown that the intestinal barrier becomes increasingly inefficient

> with advancing age and degenerative diseases. This allows only

partly

> digested protein fragments or peptides to enter the bloodstream and

> reach the brain, causing chronic inflammation and long-term

> degeneration of brain cells.

>

> Instead of reacting directly, food allergies and chemical

> sensitivities may be noticed as higher L-dopa requirements, gradual

> worsening of symptoms or increase of dysfunctional periods. After

> many years on levodopa, I noticed one patient being sensitive to the

> blue coloring of the standard Sinemet tablets with pronounced

> improvement when tablets with a different color were used. I suspect

> that many patients of all kinds of diseases deteriorate because of

> unbiological colors and preservatives used in tablet making.

>

> Copper levels are significantly higher in the cerebrospinal fluid of

> patients with idiopathic Parkinson's disease than in a control

group.

> While the specific reason for the elevated copper levels are not

> known, these are generally high when there is a chronic inflammation

> as caused by autoimmune and hidden allergy reactions. Furthermore, a

> copper enzyme is required to convert tyrosine into levodopa and

> elevated brain copper levels may be an attempt to stimulate levodopa

> production. However, high copper levels in the presence of

> antioxidant deficiencies tend to cause increased free-radical damage

> to the DNA

[Guest guest]

Andy,

Is this list helpful for people with fibromyalgia, MS, etc.? Is it a good

one? How to get on?

Barb

[ ] Re: Question

>

>> Does anyone know of a person with Parkinson's who has tried

>> chelation? Here's a little info on Parkinson's...

>

>I am familiar with this subject. To date most people doing it use

>ineffective treatments due to lack of knowledge on their and their

>doctor's part. After all, the problem with Parkinson's is the mercury

>IN the brain so only ALA chelation is going to help.

>

>Many neurology and toxicology textbooks do point out the close

>similarity between parkinson's and mercury tox and say mercury tox

>should be excluded in cases of parkinson's that are atypical.

>

>There is some clinical evidence that other heavy metals also can cause

>Parkinson's or contribute with mercury to it - The doc I work for had

>a case with a Parkinson's patient who apparently is quite bismuth

>toxic and got put over the edge by improper amalgam removal.

>

>If this is relevant to someone you know, contact me privately or talk

>about it on the adult-metal-chelation list.

>

>Andy . . . . .. . . . . . . .

>>

>>

>> " Furthermore, individuals with Parkinson's disease have much lower

>> levels of detoxifying enzymes than healthy individuals, possibly

>only

>> about 30% of normal levels. This means that toxic chemicals in such

>> individuals accumulate much more than in those with normal liver

>> functions. These chemicals are commonly fat-soluble and, therefore,

>> stored in lipid structures such as the brain.

>>

>> Aluminum greatly facilitates the passage of toxic chemicals into the

>> brain. The brain is normally protected from undesirable chemicals in

>> the bloodstream by a filter barrier. High aluminum levels have been

>> shown to allow toxic chemicals that would otherwise be kept out to

>> cross the blood-brain barrier. In addition, aluminum itself has

>> neurotoxic properties. Aluminum inhibits the synthesis of important

>> brain chemicals, it has the potential to block nucleic acid

>> metabolism within nerve cells and to interfere with magnesium in the

>> regulation of neurotransmitter receptors.

>>

>> The injection of aluminum salts into the fluid surrounding the brain

>> initiates degenerative brain changes. There is an unusually high

>rate

>> of motorneurone disease and Parkinson's disease in the indigenous

>> population of Guam in the Western Pacific. The soil and drinking

>> water in this area is unusually high in aluminum and low in

>magnesium

>> and calcium.

>>

>> Our main intake of aluminum comes from cooking utensils, antacids,

>> some baking powders, municipal water supplies and aerosol sprays.

>> Encephalopathy has been clinically induced in dialysis patients

>> through aluminum overload with mental deterioration and the EEG

>> suggesting movement disorders.

>>

>> Further brain deterioration can be caused by accumulations of the

>> heavy metals cadmium, lead and mercury. Of these, mercury is

>> generally the greatest brain hazard, coming mainly from amalgam

>tooth

>> fillings. Organic mercury compounds are strong nerve poisons that

>may

>> kill nerve cells and cause tremors. The problem is worse with two or

>> more different kinds of metal in the mouth which cause

>micro-currents

>> that interfere with nerve functions, and also the presence of

>> different toxic metals in the brain greatly potentises their harmful

>> effects.

>>

>> Finally, iron overload, especially in inorganic form, can intensify

>> Parkinson problems. Not only have PD patients low levels of natural

>> antioxidants (glutathione and superoxide dismutase) but also high

>> levels of iron in the substantia nigra areas of their brains. Iron

>> tends to catalyze free radical reactions that destroy dopamine-

>> producing cells

>> Hidden food allergies and chemical sensitivities contribute to most

>> degenerative diseases. However, in Parkinson's disease the body

>> generally is insensitive and does not readily react even when

>> specifically testing for hidden allergies. Nevertheless, it has been

>> shown that the intestinal barrier becomes increasingly inefficient

>> with advancing age and degenerative diseases. This allows only

>partly

>> digested protein fragments or peptides to enter the bloodstream and

>> reach the brain, causing chronic inflammation and long-term

>> degeneration of brain cells.

>>

>> Instead of reacting directly, food allergies and chemical

>> sensitivities may be noticed as higher L-dopa requirements, gradual

>> worsening of symptoms or increase of dysfunctional periods. After

>> many years on levodopa, I noticed one patient being sensitive to the

>> blue coloring of the standard Sinemet tablets with pronounced

>> improvement when tablets with a different color were used. I suspect

>> that many patients of all kinds of diseases deteriorate because of

>> unbiological colors and preservatives used in tablet making.

>>

>> Copper levels are significantly higher in the cerebrospinal fluid of

>> patients with idiopathic Parkinson's disease than in a control

>group.

>> While the specific reason for the elevated copper levels are not

>> known, these are generally high when there is a chronic inflammation

>> as caused by autoimmune and hidden allergy reactions. Furthermore, a

>> copper enzyme is required to convert tyrosine into levodopa and

>> elevated brain copper levels may be an attempt to stimulate levodopa

>> production. However, high copper levels in the presence of

>> antioxidant deficiencies tend to cause increased free-radical damage

>> to the DNA

>

>

>

>=======================================================

>

[Guest guest]

I have a question. I called one of the lead speech therapists over at

Children's Hospital Boston who is following my son today and I discussed

with her the possibility of Wiley being dyspraxic as he is still only

managing mama dada and bye bye and has an oral motor based feeding disorder.

Anyway, she said that Boston Children's had just had a conference on

apraxia and she really felt that terming Wiley's delay as apraxic would be

off-base. She also said, and this has been mentioned by Wiley's feeding

therapist, that apraxia is over-diagnosed and that it's the " new " thing to

find - just as Wiley's OT has said Sensory Integration Disorder is this

catch-all phrase used in conjunction with a host of children exhibiting one

quirk or another when EIP suggested that SID might be a contributing factor

to Wiley's delays.

I guess I'm a little confounded. If Children's Hospital Boston is saying

this to me - and she also said not to listen to the fatty acid thing - what

do I do? And moreso, I guess I'm just wondering if there is a big

controversy around apraxia and its diagnosis and if speech therapists are

falling to either side of that controversy and I happen to be living in

anti-apraxia world or something.

Because, honestly, I look at the flags of apraxia and Wiley hits 99% of them

square on the head - so what to do? My main concern is that Wiley is in

enough therapy. I am learning sign, he goes to 2 45 minute individual

sessions a week, one speech playgroup, and sees 2 separate OT's that equal

once a week and twice a week every other week, and he sees a feeding

therapist weekly. Is the speech being properly addressed or do I need to do

more? Does the diagnosis matter in this case?

Ack! What's the word out there on Children's Hospital Boston??

Betsy, mom to Wiley meep meep

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

,

My son takes Pro EFA and had surgery to repair a tight frenum (tongue tied). I

did not take him off of the Pro EFA before the procedure. I would show your

dentist the ingrediants of the Coromega just to make sure that there isn't

anything in it that may cause excess bleeding. We didn't have any trouble with

the Pro EFA.

Ilene, NJ

[ ] QUESTION

I HAVE A QUESTION I WOULD LIKE TO GET SOME INPUT ON.MY SON IS GOING TO HAVE

DENTAL SURGERY*FILLINGS,1 TOOTH PULLED,ETC:HE IS CURRENTLY ON COROMEGA,HOW LONG

SHOULD HE BE OFF BEFORE THE SURGERY?(DOES HE EVEN NEED TO BE OFF OF IT?)I AM

SURE SOME OF YOU HAVE BEEN THROUGH THIS.ANY IDEAS?

THANKS,BRIAN

[Guest guest]

Hi ,

Tanner never had surgery since on the EFAs in the past three years,

but about a year ago my mom was diagnosed with heart problems and

needed surgery so of course I had her go on high dosages of EFAs. My

mom informed her heart surgeon she was on the Omega 3's and he OK's

it. When she went through surgery they reported little blood loss

and that it went great (I take their word for it -wasn't there) Her

healing time was amazing and quick and she's back to teaching ball

room dance again (she's 72 -and Liz from Georgia knows -kind

of a stand up she's so funny) And yes she's still on the Omega 3/6

formula -but I'm not sure if she needs the 6 too like our kids do -or

just the 3?

Anyway -you may want to read up online about the differences between

a natural blood thinner like fish oil and a man made blood thinner

like aspirin in books like Dr. Stoll's book The Omega 3 Connection,

or read about natural blood thinners at sites like http://www.cdc-

cdh.edu/hospital/cardio/art7.html .

What I hear, just like Dr. Agin states below, is stopping the EFAs a

week before the surgery -and then continuing after. Of course there

is also the other side of the coin with surgery and fish oil-there

was an article published in the Sept. 1, 2001 issue of The Lancet

stating that a supplement combination of L-arginine, omega-3 fatty

acids, and brewer's yeast helped improve post-operative recovery from

heart surgery. The patients given the supplement combination had

stronger immune response and experienced fewer post-operative

infections than patients receiving placebo.

http://news.bbc.co.uk/hi/english/health/newsid_1517000/1517318.stm

If you really don't want to stop the EFAs for a week -you can try

increasing the amount of fish sticks your child eats that week. And

if your child really misses the fishy taste of the fish oil you can

buy some Harry Potter Bertie Botts Every Flavor Beans at Toys R Us

and hope you get a sack with lots of sardine flavored beans in it.

(yuck I thought it was coconut!!...well they are both the white

ones!!)

And speaking of Toys R Us and the recent posts about reading

programs -I know there are fabulous educational sites and programs

out there for learning to read and write, etc. Don't underestimate

the power of a good toy inventor (OK -so I used to do that) or

creator ( that too) to market something that is good for your child

in a way that is fun. I really respect Henson -we miss you Jim, PBS,

Nick, and Noggin for doing a great job of that -and Disney too of

course. So while you are checking out stuff online at educational

sites -like CHERAB advisor Dr. a Tallal's Fast For Word program

at http://www.scientificlearning.com which is highly recommended from

what I hear and read -have fun and browse the toy stores like Zany

Brainy, FAO Schwarz, Learning Express, and Toys R Us, etc. for

educational books, games -including electronic games like LeapFrog

http://www.leapfrog.com (never ending learning -can't beat that) -

and software. Also find a great kids library section in your own

town -or another town over and take your child to the read alongs,

etc. they schedule. Some PlayStation and Nintendo games are

educational believe it or not. They have Sesame Street, Dragon

Tales, Disney, etc.

Even videos can teach. My kids love this cheap little home video

called Operation Dalmatian Fun With Letters with the Z Meany Evil

Wizard who teases Zim Zim and his dog Zoo when they are singing the

alphabet song by mock singing " A, B, C, D, wah -wah -wah " and he

does an awful thing (don't want to give the ending away... OK just a

bit -he blows a gust of wind and sends Zim Zim's dog Zoo to A land,

and Zoo has to go through the whole alphabet to get back to Zim Zim)

You know maybe when I'm done with this nonprofit stuff I'll go back

to animation -sometimes I miss it (can you tell?)

Below is Dr. Agin's post again just in case you didn't catch it.

=====

[Guest guest]

My son had a frenotomy about 3 weeks ago and was on Efalex . The surgeon did

not have us stop it and he did great. Our surgeon said he had almost no

bleeding during the procedure. Hope this is helpful.

Daphne

[Guest guest]

Have you found out whether this is factual or not, Ethel? I wrote to Dr. Sentef about it but haven't heard anything.

Ellen

rheumatic Question

I had a phone call today from a nurse on the AP who was told Minocin was being phased out of production. She talked with three doctors who all said they had heard the same thing. No further details available.

Have any of you been given this information by your doctor?

EthelTo unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

rheumatic Question

I had a phone call today from a nurse on the AP who was told Minocin was being phased out of production. She talked with three doctors who all said they had heard the same thing. No further details available.

Have any of you been given this information by your doctor?

EthelTo unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

--- In @y..., " kandyk438 " <kandyk438@y...> wrote, in

part:

> I'm learning here how to help them but I don't know how to go about

> helping myself. What is it going to cost me dollar-wise to have 12

> fillings removed and replaced? And when I eat something cold or

> sugary, I feel pain in several other teeth. How much can I expect

> per tooth just to replace the current fillings? No, I have no

> insurance for it.

Hi Kandy,

I would suggest that you work on finding a mercury-free dentist

(if possible) or other dentist you want to work with. Then you

ask them to estimate the cost for you. The dentist I went to

actually offers a free consult and " charted " my teeth and gave

me a very detailed estimate. Not all will do this. You may

have to pay for it. But once this is done you will know what

the costs are and how many fillings etc.

In my case I had 8 fillings. One of them unfortunately turned

out to need a root canal (eek!) -- so it cost more than originally

planned A general ballpark figure for my dental work

(7 replacements and a root canal and a gold crown) is $4000.

A little under $4000. Oh-- I just pulled out the original

estimate sheet I got from the dentist-- and it is from $230 to

$325 per filling. ($230 for " one surface " restoation and

$325 for " 3+ surface restorations " ). Prices may vary with

different dentists/regions.

Moria

[Guest guest]

I have a friend who is very open to natural health. She is nursing three

babies right now. She is wanting to start on this supplement with

ingredients listed below. She has a mouth full of mercury fillings. Is

this supplement harmful for any reason?

Alanine 2.8% Lysine* 6.4%

Arginine 2.9% Methionine* 2.9%

Apartic Acid 6.0% Phenyalanine* 4.4%

Cystine/Cysteine .5% Proline 12.5%

Glutamic Acid 21.2% Serine* 5.4%

Glycine 1.4% Threonine 4.8%

Histidine 2.6% Tryptophan* 1.0%

Isoleucine* 4.8% Tyrosine 3.9%

Leucine* 9.4% Valine* 7.1%

Thanks in advance...

Kandy

=====

Why do you POISON your children? http://www.non-toxic.org

FREE REPORT FOR OWNERS OF HOME-BUSINESSES! How to correctly document your

business expenses and get great deductions regardless of how successful your

business is. TOP IRS ATTORNEY tells why your network marketing biz is the

ULTIMATE tax shelter. Did you know you could deduct......and......and

even......HERE'S HOW! http://taxhelp.cjb.net

__________________________________________________

[Guest guest]

Gail,

The medical name for TORT is " Congenital Muscular Torticollis " and

CONGENITAL - means " from birth " ..so YES, this proves that is was a

birth defect. And the TORT is what caused the PLAGIO..so Yes, I

think this should be the angle you take. Look on the CAPPS Kids and

Tort sites for the documentations for this definition.

Thanks,

> I'm STILL working on my level 2 appeal and I have a question for

anyone out there with an opinion on the subject. Cigna keeps calling

the DOC band a cosmetic procedure, but when I looked back at my

denial letter, they said our plan excludes cosmetic procedures except

" to treat a condition, including a birth defect " . If I can prove

that Sam and Sara's plagio and tort began in utero, would it be

considered a birth defect? Any thoughts?

> Gail

[Guest guest]

> Gail,

> The medical name for TORT is " Congenital Muscular Torticollis " and

> CONGENITAL - means " from birth " ..so YES, this proves that is was a

> birth defect. And the TORT is what caused the PLAGIO..so Yes, I

> think this should be the angle you take. Look on the CAPPS Kids

and

> Tort sites for the documentations for this definition.

> Thanks,

Great information !!! Thanks for sharing that. I would

definitely give it a try Gail, what do you have to lose? Good luck.

Debbie Abby's mom DOCGrad

MI

[Guest guest]

Well, try and get the ama's definition of birth defect and see if you can

make it work! I think it is worth a try!

beck

[Guest guest]

Well it just started happening this week...and i just called the pediatrician today..i'm waiting for her to call back. It doesn't happen all the time..but it still makes me nervous.

Thanks!

In a message dated 6/12/2002 3:37:24 PM Eastern Standard Time, dj2kirby@... writes:

:

Have you ever mentioned this to your pediatrician? He only turns

purple if on his left? He's ok on his back? If so, I would keep him

on his back to be safe. I would be concerned about this too.

I suggest calling your ped & seeing what they say.

Debbie Abby's mom DOCGrad

[Guest guest]

Thanks Kerry!

It doesn't happen all the time.but it still worries me. I called the pediatrician earlier..and am waiting for her to call me back. Thanks! I'll let you guys know what happens..

In a message dated 6/12/2002 3:49:26 PM Eastern Standard Time, kerry_jg@... writes:

Hi

The arm and leg turning purple would worry me as well. Ring your doctor/ped

and ask them about this. Please let us know how you get on.

Best wishes

Kerry - Marcus (3) Dylan in second DOCband (16months)

Calgary,AB

[Guest guest]

Well the pediatrician's office called back just now....the nurse talked to my

ped and she said it's absolutely normal for that to happen..(his leg or arm

turning purple). I guess i feel better knowing she said it's normal. It's

probably that all the blood rushes to that side..i guess. I didn't get to

talk to the dr..but next time i go i will ask her. I will just keep an eye

on him even though they said it's normal. Thanks for the replies i got!!

[Guest guest]

I would include the AMA resolution that states this is not a cosmetic

problem but a functional one. My denial was based on the insurance

co. stating my son was not born with the plagiocephaly and therefore

there was no proof that he would have any functional impairment. I

provided them in my appeal with my son's birth chart which stated

asymmetrical headshape and facial asymmetry. I also provided Infants

and Toddlers chart showing torticollis assessment, as well as

anything else I could find that documented it from birth. A friend

of mine actually got her obgyn's notes showing how she was carrying

the baby very low in her pelvic region for the last part of the

pregnancy and used that to argue that there was lot of pressure on

his head inutero. Hope this helps.

Candy, mom to (DOCgrad 6/3/02)

land

> I'm STILL working on my level 2 appeal and I have a question for

anyone out there with an opinion on the subject. Cigna keeps calling

the DOC band a cosmetic procedure, but when I looked back at my

denial letter, they said our plan excludes cosmetic procedures

except " to treat a condition, including a birth defect " . If I can

prove that Sam and Sara's plagio and tort began in utero, would it be

considered a birth defect? Any thoughts?

> Gail

[Guest guest]

I would say yes it should be considered a birth defect....my thoughts stick it to them as hard as you can...Trisha

Gail <momofivftwins@...> wrote:

I'm STILL working on my level 2 appeal and I have a question for anyone out there with an opinion on the subject. Cigna keeps calling the DOC band a cosmetic procedure, but when I looked back at my denial letter, they said our plan excludes cosmetic procedures except "to treat a condition, including a birth defect". If I can prove that Sam and Sara's plagio and tort began in utero, would it be considered a birth defect? Any thoughts?

GailFor more plagio info

[Guest guest]

Gail

this is exactly what we are working on with Tricare. OUr policy says

the DOC band is an exclusion to the policy for treatment of non

synostotic (not sure of spelling) positional plagiocephaly. Well Mya

got it inutero so it is not considered positional it is considered

congenital plagiocephaly. We think this may be our loop hole. I

beleive it is a birth defect because she was born with it. Good luck!

and keep us posted

Christi mom to MYa (DOC band 3/6/02)

-- In Plagiocephaly@y..., " Gail " <momofivftwins@a...> wrote:

> I'm STILL working on my level 2 appeal and I have a question for

anyone out there with an opinion on the subject. Cigna keeps calling

the DOC band a cosmetic procedure, but when I looked back at my

denial letter, they said our plan excludes cosmetic procedures

except " to treat a condition, including a birth defect " . If I can

prove that Sam and Sara's plagio and tort began in utero, would it be

considered a birth defect? Any thoughts?

> Gail

[Guest guest]

:

Have you ever mentioned this to your pediatrician? He only turns

purple if on his left? He's ok on his back? If so, I would keep him

on his back to be safe. I would be concerned about this too.

I suggest calling your ped & seeing what they say.

Debbie Abby's mom DOCGrad

MI

> Hi.

>

> I have a question...i'm supposed to be putting to sleep on

his left

> side only every time he sleeps....and when we lay him on his

side..sometimes

> his leg or arm turns dark purple...and it scares me so much...that

his

> circulation is getting cut off...so i move his arm or leg around

and rub it

> until it's back to normal. But this shouldn't be happening,

right? i make

> sure he's not really laying on his arm or leg..but it still

happens. I'd

> rather put him on his back...if that's going to happen. He will

most likely

> need the helmet anyway...but i wanted to be able to help him maybe

have it

> for a shorter period of time by keeping him off the back of his

head and the

> right side too...but not if it means cutting off his circulation.

>

> Does this mean something is wrong with him?

>

> Thanks,

>

> Mom to

[Guest guest]

Thanks Candy, everything helps at this point. We used the AMA resolution in

our last appeal and the pricks at Cigna just ignored it and still called it

a cosmetic problem. We're using it again with even more emphasis and then

adding the arguments that this began in utero. I have all my sonograms that

showed that they didn't move much as well as the babies chart from birth

indicating that they were large, breech and that Sara even had bruising from

being scrunched against my pelvic bones. Any rational person would see the

light in our case, but who knows what Cigna will do this time?! We're doing

the best we can, documenting everything, and playing by the rules. We know

that eventually the denial will be overturned, but we don't know in what

stage it will happen. We want to do it all by ourselves without getting an

attorney involved, but we will if we have to. Now I'm just rambling, but I

feel better. Thanks for the help.

Gail, Sam and Sara's mom, DOC grads

Re: Question

> I would include the AMA resolution that states this is not a cosmetic

> problem but a functional one. My denial was based on the insurance

> co. stating my son was not born with the plagiocephaly and therefore

> there was no proof that he would have any functional impairment. I

> provided them in my appeal with my son's birth chart which stated

> asymmetrical headshape and facial asymmetry. I also provided Infants

> and Toddlers chart showing torticollis assessment, as well as

> anything else I could find that documented it from birth. A friend

> of mine actually got her obgyn's notes showing how she was carrying

> the baby very low in her pelvic region for the last part of the

> pregnancy and used that to argue that there was lot of pressure on

> his head inutero. Hope this helps.

> Candy, mom to (DOCgrad 6/3/02)

> land

>

>

>

>

>

> > I'm STILL working on my level 2 appeal and I have a question for

> anyone out there with an opinion on the subject. Cigna keeps calling

> the DOC band a cosmetic procedure, but when I looked back at my

> denial letter, they said our plan excludes cosmetic procedures

> except " to treat a condition, including a birth defect " . If I can

> prove that Sam and Sara's plagio and tort began in utero, would it be

> considered a birth defect? Any thoughts?

> > Gail

>

>

>

> For more plagio info