New Member

[Guest guest]

Maddestuff,

I was on Copaxone twice with side effects and I am on LDN 3mg. I just ordered Copaxone through Shared Solutions and I'm going to continue taking the LDN. My neurologist doesn't know and he won't. I called neurologists in two counties in South Jersey and the Philadelphia area and finally found one. It was a two hour drive. Start calling with all your results. LDN will cost about twenty bucks with shipping. Don't give up, I feel LDN is worth a try. Chris

[low dose naltrexone] New member

Greetings:I am a new member considering LDN for treatment of MS. I was referred to this site by a friend. I recently was taking Betaseron but tested positive for neutralizing anti-bodies so now I cannot take any interferon. I am fully functional at this point and can run, I am employed, etc. but feel like I am very very slowly declining in neurological function. I have new symptoms pop in and out every three months or so. I can feel slight weakness starting to set in. For my treatment I was considering Copaxone and LDN. First question are these two comparable? Second, my doctor is a big shot as far as MS goes and he dismisses any alternative therapies. I have my appointment tomorrow morning and I am pretty certain he will say no to LDN. Does this group have a listing of friendly doctors in Chicago that would prescribe LDN? Or are there any other ways to get a hold of this drug?

Also, what is the cost?Thank you so much for any information you might be able to provide.

Never miss a thing. Make your homepage.

[Guest guest]

Dudley- Can you veer me toward the use of LDN and ALZ,

thanks,

Cheryl

Lyme gyn

Re: [low dose naltrexone] New member

Hi maddestuff,Welcome to the group!Copaxone is the only CRAB drug considered compatible with LDN.This site will tell you how to obtain LDN:http://tinyurl.com/2dfbvdFor information about LDN and other helpful advice about treating MS, visithttp://tinyurl.com/grpm9With best wishes,Dudley Delany

dudley_delany

From: maddestuffSent: Wednesday, February 13, 2008 12:48 PMlow dose naltrexone Subject: [low dose naltrexone] New member

Greetings:I am a new member considering LDN for treatment of MS. I was referred to this site by a friend. I recently was taking Betaseron but tested positive for neutralizing anti-bodies so now I cannot take any interferon. I am fully functional at this point and can run, I am employed, etc. but feel like I am very very slowly declining in neurological function. I have new symptoms pop in and out every three months or so. I can feel slight weakness starting to set in. For my treatment I was considering Copaxone and LDN. First question are these two comparable? Second, my doctor is a big shot as far as MS goes and he dismisses any alternative therapies. I have my appointment tomorrow morning and I am pretty certain he will say no to LDN. Does this group have a listing of friendly doctors in Chicago that would prescribe LDN? Or are there any other ways to get a hold of this drug? Also, what is the cost?Thank you so much for any information you might be able to provide.

Internal Virus Database is out-of-date.Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.19/956 - Release Date: 8/16/2007 9:48 AM

[Guest guest]

Hi Cheryl,By ALZ, I assume you mean Alzheimer's disease. Fortunately, that particular malady is one for which LDN holds promise as an effective treatment. There is information about LDN and Alzheimer's athttp://www.ldninfo.orgBest regards,Dudley

From: Dr. Cheryl D. Ortel

Sent: Wednesday, February 13, 2008 4:29 PM

low dose naltrexone

Subject: Re: [low dose naltrexone] New member

Dudley- Can you veer me toward the use of LDN and ALZ,

thanks,

Cheryl

Lyme gyn

Re: [low dose naltrexone] New member

Hi maddestuff,Welcome to the group!Copaxone is the only CRAB drug considered compatible with LDN.This site will tell you how to obtain LDN:http://tinyurl.com/2dfbvdFor information about LDN and other helpful advice about treating MS, visithttp://tinyurl.com/grpm9With best wishes,Dudley Delany

dudley_delany

From: maddestuffSent: Wednesday, February 13, 2008 12:48 PMlow dose naltrexone Subject: [low dose naltrexone] New member

Greetings:I am a new member considering LDN for treatment of MS. I was referred to this site by a friend. I recently was taking Betaseron but tested positive for neutralizing anti-bodies so now I cannot take any interferon. I am fully functional at this point and can run, I am employed, etc. but feel like I am very very slowly declining in neurological function. I have new symptoms pop in and out every three months or so. I can feel slight weakness starting to set in. For my treatment I was considering Copaxone and LDN. First question are these two comparable? Second, my doctor is a big shot as far as MS goes and he dismisses any alternative therapies. I have my appointment tomorrow morning and I am pretty certain he will say no to LDN. Does this group have a listing of friendly doctors in Chicago that would prescribe LDN? Or are there any other ways to get a hold of this drug? Also, what is the cost?Thank you so much for any information you might be able to provide.

Internal Virus Database is out-of-date.Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.19/956 - Release Date: 8/16/2007 9:48 AM

[Guest guest]

Hi a,

you caught this at a good time. The muscles in the neck may be tighter

on one side, causing your son to prefer that side. This is called

torticollis or tort for short. Often babies need physical therapy to

help stretch the neck - you would want to ask your doctor about this.

You can also look at the tips section and see some stretches you can

do. the therapist usually shows you exercises to do 5 or 6 times a day

at home.

One good idea is to take pictures of your son's head shape so you can

see if it improves from your repositioning. The top view often shows

asymmetry the best. Also the mirror shows facial asymmetry the best. I

don't know if helmets/bands are available in the the czech republic,

so if you can repo him that would be easiest - but it isn't always

successful.

Most kids don't like tummy time if they are used to their back, but

they get better after more time on the tummy. Try to make it

interesting with toys, a colorful mat, etc.

-christine

sydney 2 yrs starband grad

>

>

> Hey New Member!

>

> A couple of things to know about the Plagiocephaly community:

>

> If you have information to give or questions to ask, don't be shy!

Just jump

> in and ask them!

>

> We would also really appreciate it if you stopped by the DATABASE

section

> " Helmet/BandProviders " . We have compiled well over 100 entries to date

> organized by state and/or foreign country. Here you'll find many cranial

> orthosis providers hopefully near you! "

>

>

> You'll also find lots of URL's in the Bookmarks section that will

lead you

> to really good and interesting webpages. If you have one to add,

we'd love

> to hear about it!

>

> Then, you absolutely HAVE to stop by the Files/Photos section and

check out

> our

> cutie-pie kids! Everyone loves to see cute babies! (Even babies with

crooked

> noggins

>

> So, there you go.

>

> If you have any questions or concerns about the email list, let me

know and

> I'll do everything I can to help you out. In the meantime, tell us your

> story and ask us your questions. It's really a great bunch of people

and

> they really like to help!

>

> Oh yeah, if you REPLY to this message, you will be replying to me

and the

> moderators only - not the whole community! But, if you still want to

REPLY

> to this note, go ahead! We'll talk to you

>

> >>>UPDATE...

> I'd just like to add that several things have been added to

> our files here over the months - so bookmark our homepage! You'll be

going

> back

> again and again! We now have a frequently asked Q & A file in

> the " files " section (includes ways to decorate your helmet/band,

questions

> to

> ask the doctor, and what to do when your doctor says everything is

A-OK -

> but

> you don't think so!), dozens of links to articles, and a file to

help with

> insurance appeals. Not to mention the over 2000 members (to date!)

who are

> very willing to help out with those questions!

>

> If you're a little shy and don't want to pipe in, you can always

back-track

> in

> our message archives. There are thousands of messages there just

waiting to

> be

> dug up! Everything has a title, so things should be fairly easy to find.

>

> Anyway, welcome to the group! Hope it is as helpful to you as it has

been

> for me!

>

> Oh ya, for those of you who have joined to SPAM on our members, please

> unsubscribe NOW! This will not be tolerated, and if you send out a SPAM

> message, you will automatically be banned from the group. For the vast

> majority of our members who do not SPAM, I appologize. Rest assured that

> this does not happen often! )

>

>

> taime@...

> Group owner

>

>

>

>

>

>

>

> _____

>

> Be a better friend, newshound, and know-it-all with Mobile. Try

>

<http://us.rd./evt=51733/*http:/mobile./;_ylt=Ahu06i62sR8H

> DtDypao8Wcj9tAcJ%20> it now.

>

[Guest guest]

Hi, thanks a lot for your advice. I truly hope that I cought it at a good time. My son is already able to strech his neck fully to the "good side", which means to the left. So I dont think its the neck muscles, I think it was just his preference to be on the right side. I checked all the pics that we took of Danny and I noticed he always slept on the right (and I left him since didnt think that it could be dangerous) . I also breastfed him more frequently from my left breast since I had more milk in it.... Have you heard that plagio problems can cause smaller ear (its not a huge difference, but of course mother can see it. People who come to visit us can not tell the difference) Thanks a lto, achristineashok <christineashok@...> wrote: Hi a,you caught this at a good time. The muscles in the neck may be tighteron one side, causing your son to prefer that side. This is calledtorticollis or tort for short. Often babies need physical therapy tohelp stretch the neck - you would want to ask your doctor about this.You can also look at the tips section and see some stretches you cando. the therapist usually shows you exercises to do 5 or 6 times a dayat home.One good idea is to take pictures of your son's head shape so you cansee if it improves from your repositioning. The top view often showsasymmetry the best. Also the mirror shows facial asymmetry the best. Idon't know if helmets/bands are available

in the the czech republic,so if you can repo him that would be easiest - but it isn't alwayssuccessful. Most kids don't like tummy time if they are used to their back, butthey get better after more time on the tummy. Try to make itinteresting with toys, a colorful mat, etc.-christinesydney 2 yrs starband grad> > > Hey New

Member!> > A couple of things to know about the Plagiocephaly community:> > If you have information to give or questions to ask, don't be shy!Just jump> in and ask them!> > We would also really appreciate it if you stopped by the DATABASEsection> "Helmet/BandProviders". We have compiled well over 100 entries to date> organized by state and/or foreign country. Here you'll find many cranial> orthosis providers hopefully near you!"> > > You'll also find lots of URL's in the Bookmarks section that willlead you> to really good and interesting webpages. If you have one to add,we'd love> to hear about it!> > Then, you absolutely HAVE to stop by the Files/Photos section andcheck out> our > cutie-pie kids! Everyone loves to see cute babies! (Even babies withcrooked> noggins > > So, there you go.

> > If you have any questions or concerns about the email list, let meknow and > I'll do everything I can to help you out. In the meantime, tell us your > story and ask us your questions. It's really a great bunch of peopleand > they really like to help!> > Oh yeah, if you REPLY to this message, you will be replying to meand the> moderators only - not the whole community! But, if you still want toREPLY> to this note, go ahead! We'll talk to you > > >>>UPDATE...> I'd just like to add that several things have been added to> our files here over the months - so bookmark our homepage! You'll begoing> back> again and again! We now have a frequently asked Q & A file in > the "files" section (includes ways to decorate your helmet/band,questions> to > ask the doctor, and what to do when your doctor says everything

isA-OK -> but> you don't think so!), dozens of links to articles, and a file tohelp with> insurance appeals. Not to mention the over 2000 members (to date!)who are> very willing to help out with those questions!> > If you're a little shy and don't want to pipe in, you can alwaysback-track> in > our message archives. There are thousands of messages there justwaiting to> be > dug up! Everything has a title, so things should be fairly easy to find.> > Anyway, welcome to the group! Hope it is as helpful to you as it hasbeen> for me!> > Oh ya, for those of you who have joined to SPAM on our members, please> unsubscribe NOW! This will not be tolerated, and if you send out a SPAM> message, you will automatically be banned from the group. For the vast> majority of our members who do not SPAM, I appologize. Rest assured that>

this does not happen often! )> > > taime@...> Group owner> > > > > > > > _____ > > Be a better friend, newshound, and know-it-all with Mobile. Try><http://us.rd./evt=51733/*http:/mobile./;_ylt=Ahu06i62sR8H> DtDypao8Wcj9tAcJ%20> it now.>

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Thanks ! My son has actually been evaluated by a dr and there are no signs of neck or muscle tightness. I have a very small opening in my pelvis and I was not supposed to have him natural, but he had other plans. He came in about 1 hour - They had prepped me for the c-section, and when they put me on the table his head was already on it's way out, so there was nothing they could do. I believe that he also dropped too soon and because of the shape of my pelvis it may have contributed to his head shape. He was also vacuumed on one side of his head because they had already given me a spinal block before they realized that he was on his way out, so I could not push him out. I really appreciate all the info I can get. I really feel bad that I may be the main reason that his head is the way it is, but there is really nothing I could do to prevent it. Anyways,

Thanks Again!christineashok <christineashok@...> wrote: Hi a,you caught this at a good time. The muscles in the neck may be tighteron one side, causing your son to prefer that side. This is calledtorticollis or tort for short. Often babies need physical therapy tohelp stretch the neck - you would want to ask your doctor about this.You can also look at the tips section and see some stretches you cando. the therapist usually shows you exercises to do 5 or 6 times a dayat home.One good idea is to

take pictures of your son's head shape so you cansee if it improves from your repositioning. The top view often showsasymmetry the best. Also the mirror shows facial asymmetry the best. Idon't know if helmets/bands are available in the the czech republic,so if you can repo him that would be easiest - but it isn't alwayssuccessful. Most kids don't like tummy time if they are used to their back, butthey get better after more time on the tummy. Try to make itinteresting with toys, a colorful mat, etc.-christinesydney 2 yrs starband grad> > > Hey New Member!> > A couple of things to know about the Plagiocephaly community:> > If you have information to give or questions to ask, don't be shy!Just jump> in and ask them!> > We would also really appreciate it if you stopped by the DATABASEsection> "Helmet/BandProviders". We have compiled well over 100 entries to date> organized by state and/or foreign country. Here you'll find many cranial> orthosis providers hopefully near you!"> > > You'll also find lots of URL's in the Bookmarks section that willlead you> to really good and interesting webpages. If you have one to add,we'd love> to hear about it!> > Then, you

absolutely HAVE to stop by the Files/Photos section andcheck out> our > cutie-pie kids! Everyone loves to see cute babies! (Even babies withcrooked> noggins > > So, there you go. > > If you have any questions or concerns about the email list, let meknow and > I'll do everything I can to help you out. In the meantime, tell us your > story and ask us your questions. It's really a great bunch of peopleand > they really like to help!> > Oh yeah, if you REPLY to this message, you will be replying to meand the> moderators only - not the whole community! But, if you still want toREPLY> to this note, go ahead! We'll talk to you > > >>>UPDATE...> I'd just like to add that several things have been added to> our files here over the months - so bookmark our homepage! You'll begoing> back> again and again!

We now have a frequently asked Q & A file in > the "files" section (includes ways to decorate your helmet/band,questions> to > ask the doctor, and what to do when your doctor says everything isA-OK -> but> you don't think so!), dozens of links to articles, and a file tohelp with> insurance appeals. Not to mention the over 2000 members (to date!)who are> very willing to help out with those questions!> > If you're a little shy and don't want to pipe in, you can alwaysback-track> in > our message archives. There are thousands of messages there justwaiting to> be > dug up! Everything has a title, so things should be fairly easy to find.> > Anyway, welcome to the group! Hope it is as helpful to you as it hasbeen> for me!> > Oh ya, for those of you who have joined to SPAM on our members, please> unsubscribe NOW! This

will not be tolerated, and if you send out a SPAM> message, you will automatically be banned from the group. For the vast> majority of our members who do not SPAM, I appologize. Rest assured that> this does not happen often! )> > > taime@...> Group owner> > > > > > > > _____ > > Be a better friend, newshound, and know-it-all with Mobile. Try><http://us.rd./evt=51733/*http:/mobile./;_ylt=Ahu06i62sR8H> DtDypao8Wcj9tAcJ%20> it now.>

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

, does Medicare NOT cover Enbrel and Humira???? Oh, lordy -

I'll be there before you know it. Someone please enlighten me about

Medicare coverage of Humira.

thanks,

sherry z

\

[Guest guest]

Re: Medicare and Enbrel. I, too, am on Medicare but also have Medicare RX -

which does cover Enbrel as long as my primary insurer (BC/BS) approves it. It's

still costly but after the donut hole (which I will reach by the end of March,

largely as a result of paying for Enbrel first at 35% and then in its entirety),

it will go down to about $75/month for the rest of the year. This is not what

I had planned to spend retirement money on but the alternative is being in

misery all the time and not being able to do much of anything.

Joanna Hoelscher

630-833-7361

[Guest guest]

Where in Southern California are you? I live in the Santa Clarita Valley, but travel all the way to Palm Springs to see a doctor who prescribes my LDN for MS-like symptoms. If you are interested the in the Palm Springs doctor's name and number email me privately and I will get that info to you.

Welcome to the group! If I don't get back to you today, I will on Monday -- I'll be gone this weekend!! Chrisie

[low dose naltrexone] new member

Good Morning!I had begun this introductory post and the dang cat walked across the keyboard and changed the page! My name is Jacque, from So CA. and in my 12th year of RA. Thanks for allowing me to join this group.I just heard about LDN a couple of days ago and think it may be a effective and affordable treatment for me. In my reading I found a list of drugs not to be taken in conjunction with LDN and didn't find my current med. on the list. I'm taking 20mg methotrexate per week and I'm wondering if that effect on the immune system in one dose would impact the effect of LDN. If not using the methotrexate is advisable how long in advance of LDN treatment should I stop the methotrexate? I didn't see Welbutrin on the list either but would appreciate further info.I don't have a doctor at this time, my rheumatologist recently passed away and I dread finding a new doctor AND trying to

convince him/her to proscribe a drug off label. Is there another route available or a way to find proscribing doctors in my area?I'd sure appreciate an info!Jacque

[Guest guest]

Hi Jacque,Welcome to the group!Methotrexate is a chemotherapeutic agent that has an immunosuppressant effect. It will tend to oppose the immune system upregulation induced by LDN. For best results using LDN, you will need to wean yourself off the drug.Wellbutrin should be alright with LDN.This site will tell you how to obtain LDN:http://tinyurl.com/2dfbvdFor supplemental information about treating RA, visithttp://tinyurl.com/2y3elqSincerely,Dudley Delany

dudley_delanyFrom: Jacquelyn Redford

Sent: Friday, March 7, 2008 11:38 AM

low dose naltrexone

Subject: [low dose naltrexone] new member

Good Morning!

I had begun this introductory post and the dang cat walked across the

keyboard and changed the page! My name is Jacque, from So CA. and in

my 12th year of RA. Thanks for allowing me to join this group.

I just heard about LDN a couple of days ago and think it may be a

effective and affordable treatment for me. In my reading I found a

list of drugs not to be taken in conjunction with LDN and didn't find

my current med. on the list. I'm taking 20mg methotrexate per week

and I'm wondering if that effect on the immune system in one dose

would impact the effect of LDN. If not using the methotrexate is

advisable how long in advance of LDN treatment should I stop the

methotrexate? I didn't see Welbutrin on the list either but would

appreciate further info.

I don't have a doctor at this time, my rheumatologist recently passed

away and I dread finding a new doctor AND trying to convince him/her

to proscribe a drug off label. Is there another route available or a

way to find proscribing doctors in my area?

I'd sure appreciate an info!

Jacque

[Guest guest]

Sherry: as I pointed out in an earlier e-mail, Medicare will cover Enbrel

(don't know about Humira but I assume so) as long as your Medicare RX private

insurer approves it. I have BC/BS and they balked at first (wanted me to try

MTX first - rheumy wanted me on Enbrel and fought for it.) It changes a bit

every year but you pay 35% of the cost until you and your insurer have

contributed a total of $2400. Then you go into that " donut hole " where you have

to pay the entire amount, which for Enbrel is now $1440/month (4 doses). When

you have paid a total of $4200, then the cost goes down to about $75 per month

because it's considered that you've achieved coverage at the " catastrophic "

level. I am already in the donut hole and expect - after March - to be thru it

and paying only the $75/month for the rest of the year. Still expensive but

better than not having it at all.

Hope this is helpful - and that by the time you're in need of it, Congress will

have improved the program. I now know why seniors used to complain so about the

cost of drugs and were ordering from Canada!!!!!!

Joanna Hoelscher

630-833-7361

[Guest guest]

Only $1440 a month for Enbrel.... holy cow... My Enbrel is $2822 a

month. At least that is what they bill my insurance companies. For

January my out of pocket portion was over $780 and thats with my

insurance paying and then my partners insurance from work also

paying :-( I have signed up for some program through McKesson that

is supposed to help pay at least part of the over $780 they expect me

to pay for just January. The really sad part is that working full

time as a certified nursing assistant my take home pay is only about

$1212 a month.... so there is no way I can pay a mortgage and all the

other things in life when they expect me to pay that much as a co-pay

along with the other about $250 a month in prescription co-pays for

my other meds and insulin that I take UGH!!!! Sometimes I just want

to scream.

Good day to all ;-)

M

Wilton, IA

[Guest guest]

I don't know how much you're taking but I think I'm at the max. I'd probably

check out that price because my doctor - before every knowing what kind of

insurance I had or if I had any - said Enbrel ran about $1400/month. It they're

charging your insurance company that much more, it sounds like price gouging.

FYI: when they set up the Medicare rx program, one of the controversies was a

provision prohibiting the government from negotiating prices with pharmaceutical

companies so that $1440 should be the normal " retail " price.

Joanna Hoelscher

630-833-7361

[Guest guest]

Mine is about 1600 and Enbrel is picking up my copay so my out of

pocket is 0. ask your Dr. about some of the programs to help.

>

> Only $1440 a month for Enbrel.... holy cow...

[Guest guest]

I had Medicare, but then went back to work so my primary ins was

through work, and Medicare was secondary. I lost my job, in part do

to my health issues, and lost my insurance. Medicare became primary,

but I don't have drug coverage and was told by Medicare that I have

to wait for the open enrollment period in Dec. I can sign up for

Secure horizons or one of those plans. Does anyone know which

Medicare HMO is the best for covering Enbrel?

[Guest guest]

That program is only for the first year (though some have been able to get it

extended.) It is not available to anyone on Medicare - which I just don't

understand but BC/BS blamed Medicare and Medicare blamed BC/BS and I got tired

of trying to fight with both of them. Physician's assistant finally verified

that it was true.

Joanna Hoelscher

630-833-7361

[Guest guest]

I use the preloaded syringes not the auto inject ones. And I take

one shot a week rather than two shots a week (I know you can take two

shots a week one every 3-4 days and I think thats the max)

I had to go to a home health care place to get the Enbrel script paid

because its covered under my medical insurance rather than my

prescription insurance. The pharmacy I go to for my meds said that I

would have to pay the entire amount and then get reimbursed by my

medical insurance.... I do think that my regular pharmacy which is

Wal-Mart did tell me the price was around $1500 a month... so I was

really surprised when I looked online at what my medical insurance

company was billed from the home health place. They ship it to my

just so I don't have to drive the nearly hour to go pick it up every

month and actually they charge my insurance 30 bucks a month to have

UPS ship it to me next day.

I am really hoping that the card I got from the Rheumy will help to

pay for all of the cost or at least most of it. The Rheumy Nurse did

say if it was a problem to get in touch with her and she would see if

she could find something else to help me out too. She did give me a

website for one place they helps with med costs for certain diseases

and right now for people with PA they are were not accepting " new

patients " or whatever it was they called it.

Thanks for the info.

M

Wilton, IA

[Guest guest]

I don't know anything about Medicare HMO's because I hear nothing but bad

experiences with HMO's from people who have serious illnesses. So, they may be

totally different from the regular Medicare program and include prescription

drug coverage. However, I'd bet that they are also the most difficult to get

Enbrel coverage from. They are notorious for denying expensive treatments.

Whatever you do, be sure to research carefully your options.

Joanna Hoelscher

630-833-7361

[Guest guest]

Welcome -

Are you sure she said 5/18 and not 5/16? I don't believe 18 is a

fraction of an inch, I believe it's 16. My son measured 11/16 of an

inch asym at one ortho and 15mm at another, and is considered high-

end moderate. I found a conversion calculator and if I put in 5/18,

it comes out to 7mm, and 5/16 comes out to 8mm, so either way, she's

somewhere around 7-8mm of asym (when I put in 11/16, I get more like

17.5 mm, so it doesn't seem like my son's measurements are very

exact). I believe 6-10mm is considered mild.

The helmet will not be as bad as you plan for. After an adjustment

period, it just becomes part of them and it should go smoothly. I

was especially lucky, my son adjusted very easily and slept the

first night with it on for 12 hours without a problem. We just dealt

with sweat for the first week. Some babies have a hard time sleeping

at first, but should adjust after a week or so and before you know

it, they'll start to look funny without their helmet on!

Good luck!

Jake-18m (tort resolved/rt plagio/DocBand 2/11/08)

Jordan-4

>

> Hello- My name is and my daughter has been diagnosed with

> plagiocephaly. She was fit for a helmut last week ( and

> Fillipis). The orthotist said the difference was 5/18 of an inch

(her

> left side is flatter. She is 2 standard deviations from the norm.

Can

> anyone tell me how severe she is considered? I got a vague-

" that's not

> too bad " and am very frustrated.

>

> I am worried about putting her in a helmet- can anyone share their

> experience? Was it hard for your baby? Any advice of feedback

would be

> really helpful! Thanks so much.

>

[Guest guest]

Thank you so much for replying- I have been obsessing about this and it is wonderful to hear from you. It very well could be 5/16- thanks for looking it up! It is comforting to hear others experiences. I hope my baby (who is just under 5 months) adjusts well. I get her fit for it tom. After the awful time she had in the casting process I must admit I am a bit nervous! thanks again for the post!nwilkens2275 <nwilkens2275@...> wrote: Welcome -Are you sure she said 5/18 and not 5/16? I don't believe 18 is a fraction of an inch, I

believe it's 16. My son measured 11/16 of an inch asym at one ortho and 15mm at another, and is considered high-end moderate. I found a conversion calculator and if I put in 5/18, it comes out to 7mm, and 5/16 comes out to 8mm, so either way, she's somewhere around 7-8mm of asym (when I put in 11/16, I get more like 17.5 mm, so it doesn't seem like my son's measurements are very exact). I believe 6-10mm is considered mild.The helmet will not be as bad as you plan for. After an adjustment period, it just becomes part of them and it should go smoothly. I was especially lucky, my son adjusted very easily and slept the first night with it on for 12 hours without a problem. We just dealt with sweat for the first week. Some babies have a hard time sleeping at first, but should adjust after a week or so and before you know it, they'll start to look funny without their helmet on!Good luck!Jake-18m (tort

resolved/rt plagio/DocBand 2/11/08)Jordan-4>> Hello- My name is and my daughter has been diagnosed with > plagiocephaly. She was fit for a helmut last week ( and > Fillipis). The orthotist said the difference was 5/18 of an inch (her > left side is flatter. She is 2 standard deviations from the norm. Can > anyone tell me how severe she is considered? I got a vague-"that's not > too bad" and am very frustrated. > > I am worried about putting her in a helmet- can anyone share their > experience? Was it hard for your baby? Any advice of feedback would be > really helpful! Thanks so much. > , Ph.D., LPAssociate Director, Behavioral MedicineMcLaren Regional Medical Center810-733-9642

[Guest guest]

Thanks. Good luck to you too.

> >

> > My 10-month-old preemie (32 weeker) was just diagnosed and

fitted for a helmet today. I

> > am really upset and worried. I guess I need some support...

> >

>

>

> My 10-month old preemie (34 weeks) is going in on Monday to get

her helmet so I'm in the

> same situation. My dr. kept telling me it would improve but her

head remained flat in the

> back regardless of the repositioning we tried. I just keep

tellling myself she will appreciate it

> when she's older...

>

> Good luck!

>

[Guest guest]

It will be okay! Torticollis means " twisted neck " ...does she tilt

to one side? prefer looking one way? etc.? All of those are

symptoms of torticollis which physical therapy is needed for. That

is great that she loves tummy time. Sometimes the causes of

torticollis or plagio or brachycephaly are unknown. Sometimes it is

how babies are positioned in utero or the birthing process or

positional. Babies heads are so moldable and since they sleep A LOT

in the beginning their heads constantly have pressure placed on

their heads. I wouldn't beat yourself up. The helmet is not that

bad and babies truly do adjust pretty quick (some take longer but

most adjust right away). As for going out, we never had a rude

comment...we'd have questions about what the helmet was for or

people comment on how they know someone that had to wear a helmet.

Be thankful that this was caught early and you can do something non-

invasive about it. Some people find out much later and the window

of opportunity closes.

Welcome to the group and again it will be okay.

>

> My daughter is 4 1/2 months old and she has brachycephaly. The

> doctors are telling me that it is not so severe. She also has

> toricollis, which I can't seem to understand. Since she was two

> months old she has kept her head up during tummy time. She loves

> tummy time and has gone on to do it up to 30 minutes. We just

ordered

> her a helmet and have discovered that she qualifies for early

> intervention. She has been going to physical therapy for a

month.

> Can someone please explain to me what all this means? I am so

> confused. I think my daughter is great and adorable and now she

has

> to go through all of this. I am having a hard time understanding

and

> dealing with all of this. When does the anxiety end? I am not

> looking forward to her having the helmet on. Our society can be

so

> cruel and I am anxious about taking her out. There is also part

of me

> who blames herself. Maybe I had her in the carseat too much or

lying

> down too much. Also, will this affect her development? I worry

so

> much that she will be delayed later on in life. I am a teacher

and I

> am so aware of kids development, will she be behind the other

students

> because of this? I know that I am rambling, but I am just so

confused

> and upset. Thanks for your help in advance.

>

[Guest guest]

It really can be overwhelming at first, but gets much easier once you

get started. My daughter was diagnosed with brachy around the same

age. She wore a starband from age 5 to 10 mo. This is longer than

most kids, but she did really well, and once she was out of her band

it seemed she hardly wore it at all. Her brachy was severe, but she

got good correction. She didn't have tort, or much asymmetry (4.5 mm).

You can see pics under the photos " Our Plagio Babies S/ Sydney M " .

Brachy and plagio are pretty common now that babies sleep on their

back and spend time in car seat, stroller, swing etc. Unfortunately

doctors are not good about educating parents to limit time in these.

You are lucky your baby likes tummy time, since that probably kept the

brachy from getting worse. However babies sleep a lot and that puts a

lot of pressure on their head. Really you should also vary their

sleeping position (position of head) but I never knew that when she

was small. We are just lucky to find out about banding while they are

still young enough to benefit and improve their head shape. Some

parents are told to wait for the head to round out on its own, and

that doesn't happen in many case.

Let us know how you and your daughter adjust :-)

-christine

sydney 2 yrs starband grad

>

> My daughter is 4 1/2 months old and she has brachycephaly. The

> doctors are telling me that it is not so severe. She also has

> toricollis, which I can't seem to understand. Since she was two

> months old she has kept her head up during tummy time. She loves

> tummy time and has gone on to do it up to 30 minutes. We just ordered

> her a helmet and have discovered that she qualifies for early

> intervention. She has been going to physical therapy for a month.

> Can someone please explain to me what all this means? I am so

> confused. I think my daughter is great and adorable and now she has

> to go through all of this. I am having a hard time understanding and

> dealing with all of this. When does the anxiety end? I am not

> looking forward to her having the helmet on. Our society can be so

> cruel and I am anxious about taking her out. There is also part of me

> who blames herself. Maybe I had her in the carseat too much or lying

> down too much. Also, will this affect her development? I worry so

> much that she will be delayed later on in life. I am a teacher and I

> am so aware of kids development, will she be behind the other students

> because of this? I know that I am rambling, but I am just so confused

> and upset. Thanks for your help in advance.

>

[Guest guest]

You seem to have gotten some great responses to your questions, but

I just wanted to mention that I have not heard of brachy and plagio

causing developmental delays. A lot of moms have asked that same

question, and I have yet to hear anything of that sort. I believe

that if it did cause delays, doctors might actually be more pro-

banding. There's more talk of it causing eye and ear problems,

headaches, TMJ (clicking of the jaw), and orthodontia problems if

left untreated.

As for the torticollis, it's great that your daughter is in physical

therapy for it. My son had it and now has full range of motion of

his neck, and his head doesn't tilt anymore. Don't beat yourself up.

None of us knew about plagio or brachy either, but you're doing

something about it now, and that's all your daughter can ask of you.

Good luck with everything!

Jake-18m (tort resolved/rt plagio/DocBand 2/11/08)

Jordan-4

>

> My daughter is 4 1/2 months old and she has brachycephaly. The

> doctors are telling me that it is not so severe. She also has

> toricollis, which I can't seem to understand. Since she was two

> months old she has kept her head up during tummy time. She loves

> tummy time and has gone on to do it up to 30 minutes. We just

ordered

> her a helmet and have discovered that she qualifies for early

> intervention. She has been going to physical therapy for a

month.

> Can someone please explain to me what all this means? I am so

> confused. I think my daughter is great and adorable and now she

has

> to go through all of this. I am having a hard time understanding

and

> dealing with all of this. When does the anxiety end? I am not

> looking forward to her having the helmet on. Our society can be

so

> cruel and I am anxious about taking her out. There is also part

of me

> who blames herself. Maybe I had her in the carseat too much or

lying

> down too much. Also, will this affect her development? I worry

so

> much that she will be delayed later on in life. I am a teacher

and I

> am so aware of kids development, will she be behind the other

students

> because of this? I know that I am rambling, but I am just so

confused

> and upset. Thanks for your help in advance.

>

[Guest guest]

Hi

welcome ( although I HATE to welcome others into this group as it means a little

one has become ill!!)

Ill try to answer things?in the order?you asked.( before I forget--many of us

here also have Lyme and find it easier to read when every 4-5 lines or so has a

space!! thanks!)

Im glad youre seeking LLMD's and its excellent that youve gotten your

peds/child's Dr to consult and start something while awaiting your appt.- Hint:

if its a young child you may be able to get a quicker appt--ask to be placed on

the cancel list and be willing to go with 24 hr or less notice!!

Also if you havent yet, ask your friend for names of local support groups- they

are a wealth of info AND can tell you the pros and cons of the various LLMDs at

your disposal. Keep in mind that like all else its individual opinion--you may

find 1 or 2 disliking a Dr that 25 love!! Find someone with experience with

younger kids and Lyme as well as willing to work with your specialists.

Make sure you tests for co-infections--unfortunately Lyme doesnt usually travel

alone--company may include Bartonella, Babesia, HGE and HME ( both are

ehrichiosis), Mycoplasma ( which MAY have been the source of bronchitis like

symptoms!!),STARI, tularemia (a bit more rare) and relapsing fever ( caused by a

species of Borrelia- the same bacteria causing Lyme)

There is a LOT of treatment style differences even among LLMDs--some always go

to IV others wait--some try to weigh risks vs benefits and age/symptoms of

patient as well. There is no one formula unfortunately its an educated guess and

thats why you should develop a comfort level with the Dr. and be willing to ask

" why are we doing this?? " ? " what if we DONT do it? " and even " what if we do

something else instead? " and " what can I expect and after how long? "

Start immediately to keep a symptom diary--along with foods and drinks--patterns

may emerge to help all to gauge treatment success. Even noting behavioral

symptoms like being cranky at an hour he usually isnt may help!! Healthy diets

can only help his immune system work with the meds.

As for sugar and yeast--some have it worse others not at all. The best thing is

ask your Dr which chewable acidophilus ( or you can research this yourself) you

should/could use. There are also liquids out now. Make sure they have several

organisms ( 'good bacteria " ) and guarantee LIVE ones. You can search consumers

union and they have several ratings for things like : viability ( how alive and

how well the body will be able to use), guaranteed numbers and contents ( does

the dose have what it claims to ) etc

You may want to wean him off of a lot of sugar anyway as that can tax the immune

system and his body will need all his reserves to deal with fighting the TBD (

tick borne diseases) and eliminating the antibiotic breakdown.

Dont be alarmed if he first gets worse or has periods and patterns of worse

times. This may be due to die off and can be a good sign. Again some kids do,

others just gradually improve

very young ones like your son actually often do better, faster than teens

do!!theyre little bodies really bounce back so please dont panic.

as for diet--try to introduce lots of fruit and veggies--try sugar snap

peas-naturally sweet and fun--use a mild dipper sauce if he likes that ( my

youngest at age 2-5 liked to spear everything and dip--whether into ketchup or

sour cream or anything really--once he grabbed a pencil and speared his

quartered sandwich!!)

sour cream with a little honey or a little sugar or even some natural jam

stirred in makes a great dipper sauce.

there are LOTS of online sites for kids to get healthier foods introduced--

frozen banana slices ( freeze in skin whole--skin goes black but inside stays

great--use a very ripe one)

are naturally sweet. while frozen, peel by making a few long slits then slice

and serve partly frozen--YUMM

also with yeast--IF it develops, youll have to drop back on the fruit too--but

dont worry--for many its not so drastic!!

for veggies, by frozen peas and let?a hadnful?thaw a tiny bit--great snack to

pick from the bowl.

cooked carrot sticks ( he may be a bit young for fresh raw--choking hazard as

are whole grapes--cut them in? half), try canned chick peas, drained and

rinsed--toast a few min. in? pan or not--another pick at it snack loaded with

protein!!

You may want to try wheat or gluten free for a short while--THATS very hard with

a young child--but there are sites online for that too.

make sure he drinks a lot of clean filtered water--and/or adds watermelon loaded

with fluids. If like my son he doesnt drink enough, you can lightly salt some

snacks to induce thirst.

Also reduce juices by diluting half or more with water ( do this gradually or

else he may refuse it)

Avoid sodas if at all possible-- for many reasons: teeth, immune system,bones

As for your son's symptoms they are very common.

?Evan now age 18 was infected while I was pregnant--thru infancy and later he

had stomach/GI issues all ignored and at age 3 ish he too began with knees

--then after treatment he was fine for 10 years!!-- not to say your son will

relapse--just to say that your son's symptoms are VERY common!!

A neurologist can check for things relating to eyes and so you may save a trip

to yet another " ologist " BUT be aware that the past year most of not nearly ALL

neuro's have gone over to the dark side.--their association put out a position

paper which backs the infectious disease camp of too little treatment over too

short a time and totally ignores the persistence for some even after

antibiotics!! And peds neuro's can be worse!!

IF you can find a neuro who is still Lyme friendly ( again the support groups

and your friend will be a big help here),you may need one on board--BUT if you

cant find anyone good--at least have your son checked by a good neuro and try to

avoid using the " L " word--my advice is to say " well Dr then what else may

explain his symtpoms and can we rule that out " . This way youre covering all

bases( kids have been known to have other coincidental conditions with the Lyme

so better safe than sorry anyway)--

finding a peds neuro is hard as it is, so we often settle for someone who isnt

totally anti-Lyme and make the best of it.

IMHO your son doesnt sound too ill--A very GOOD thing--and a sign he will have a

very good recovery!!! Know that all of us here are right here if you need us--if

you need a late night ear or quick response my email is finrussak@...

Be wary of some other internet sites--some are very themed--and urge only their

'cure of the day' be it an energy machine or 'bleach water " etc etc--always look

into everything and ask the risks and possible negative effects as many of these

sites only allow posters to tell of their positive experiences.And always ask

about younger kids--I am VERY wary of young kids being made guinea pigs when

their bodies are so vulnerable!!

There is a LOT of mining out there in the golden Lyme hills and when money and

power are involved often the patients are rolled over--even and often especially

the children--if it sounds too good to be true---it often IS. Question

everything ( even standard medical care--it IS your child after all) and trust

your gut--Momma knows!!

I wish you a very smooth and speedy path for your son's recovery!! let us know

what happens and again if you need anything we are here.

Finette

[ ] New Member

Hi All-

I am the mother of a 3 year old boy that was just diagnosed with

Lyme. His screening test came back positive, and his Western Blot

negative. But I'm sure it is Lyme that he has. (I also have a friend

with Chronic Lyme- and know how hard it can be to diagnose.) Anyway,

woke up a week ago with a limp, next day couldn't walk...

complained of a sore knee. When I started to think about it- he had

limped on other mornings but it never lasted more than minutes in the

morning and it was only maybe once a month. Other clue was 2 months

ago I had him at the dr. for a stomach ache that he had been

complaining about for 4 days. Of course cbc's and urine came back

normal then.

So this time I requested that they do a lyme test. Dr. in the ER

actually said to me " It's too early for ticks to be out. " Like a boy

with arthritis caused by lyme got bit by a tick yesterday! I can't

believe they don't know more about lyme in this area. Northern

Wisconsin... what I'm thinking could compete for the title of Lyme

Capitol USA? Anyway, the nurse practioner prescribed amoxicillin for

3 weeks. Said he should be fine after that and we'd have to watch his

symptoms. I unfortunately knew better and scheduled an appointment

with my dr. and requested he consult the LLMD that was nearby. He

said 4-8 weeks oral amoxicillin. The other LLMD in the area said she

would do IV for 6 weeks. We are trying the oral, hoping that will be

a good start.

I still need to get an appointment with the LLMD to go over other

things we need to be doing. But I know it is a 2 month wait to see

the LLMD.

Question- I've heard about the sugar problem with abx. My 3 year

old (barely 3- he's 37 months old) lives on sugar, and is an

impossibly picky eater. Will for sure have yeast problems if he

doesn't stop the sugar? What should his diet consist of?

Any other advice or help anyone has would be greatly appreciated.

I think most likely has had Lyme since late last summer. He did

have a sick period last March where he had severely high fever 106-

and chills and dr. diagnosed bronchitis- radiologist disagreed. I'm

hoping this wasn't the start of his lyme, for that would mean he's

had it for over a year. He was healthy from April-August with no dr.

appts or issues. It wasn't until last fall the ear infections,

random fevers, a few skin rashes began. And the random limp that

would appear from time to time. I'm kicking myself for not getting

him tested sooner.

One last thing- should I bring him to an optomalogist (sp?) or

neurologist? Is there a way to check for neurological symptoms in a

3 year old? Sorry for the length of this first post. is for

the most part a happy, active 3 year old... with the occasional joint

pain. I'm so praying this can be treated and controlled.

Thanks in advance for your time, and your advice!