New Member

[Guest guest]

You folks know there is a generic Rocephin now right? Available in all

forms. Been out since this summer.

>

> and Lizzie,

>

> Yes,, Rocephin is very expensive. 1g of Rocephin is $200 and

> the flushes of saline and heparin additional $28.00. The PICC line

> placed in at a local hospital was $2,500. > > Lizzie>

[Guest guest]

> > >

> > > Hello to all,

> > >

> > > My name is , I'm 33 yrs old, have been ill on and off

> for 8

> > years

> > > with no diagnosis, and I have recently been diagnosed with Lyme

> > Disease. My

> > > diagnosis was made based on symptoms and then was verified with

> > results from

> > > the Bowen Q-RiBb test. Anyway, I am about to temporarily

> relocate

> > from my

> > > home in the Chicago suburbs to Kansas City MO to begin extremely

> > rigorous IV

> > > treatment. The doctor that I am working with is brilliant and I

> > have all

> > > the confidence in the world with her but I am very nervous about

> the

> > > finances involved. Since she is out of network the costs are very

> > high and

> > > my insurance is estimating to pay about 40 percent. I was just

> > wondering

> > > if anybody else is seeing an out of network doctor and what the

> out of

> > > pocket costs for you are? AT this point, I don't even know what to

> > expect

> > > because I don't know what standard charges for this type of

> > treatment are?

> > > What can I expect to pay? What are others paying for IV treatment

> > with out

> > > of network doctors. By the way, all my IV treatments will be done

> > in the

> > > physicians clinic, twice a day seven days a week. I am so

> desperate

> > to get

> > > well and but at the same time I am scared to death of the

> possibility of

> > > going into financial ruins. Any input will help, I am desperate!!

> > >

> > >

> > >

> > Welcome,

> > My LLMD gave me the prescription for the rocephin. I found a

> pharmacy

> > that sold it for a reasonable price. Shop around. I had the IV put

> in

> > at my local hospitol. I got a nurse to teach me how mix the saline

> > with the rocephin which is a powder in a small bottle and to

> > administer the rocephin and clean the site once a week. It took

> about

> > 1/2 hr. I administered my rocephin twice a day and never had a

> problem

> > with the site becomming infected. Real important to clean the site,

> > change bandages, every week. This saved me a ton of money! And it

> was

> > easy to do. It takes a while to do each injection, so I would just

> > turn on the TV and just take it slow, about 20 min to inject. You

> can

> > do this I promise. I was a wreck the first time but after that I

> > realized I could do it myself. I am right handed so I had the IV on

> my

> > left said. I did this myself for 8 months.

> > Best of luck to you,

> > Lizzie

> >

>

[Guest guest]

>

Response from Lizzie,

I had a PICC line as well. When I said IV I meant interveinious

through a picc line. It had the port on the end where I could screw in

the syringe, ie. needleless system, which only took me 20 minutes to

administer. This was not a drip system, but slow IV push. After I

slowly administered the Rocephin I flushed it with saline. Heparin is

not necessary if you are administering twice a day, is an unnecessary

expense. I never did and I was fine.

Yes, 8 months is a long time, but 8 months is what my medical dr, LLMD

recommended. I also know of many other who have been on such long term

IV/picc line use. It takes a long time to kill resistant Bb.

It does not matter which arm it is placed in, if it did matter than

they would not have placed it in the left arm. It sounds like Lidas

picc line delivered to pre oxygenated blood, old blood via the vena

cava, as mine was delivered to oxygenated blood directed to the aorta.

Lizzie

>

and Lizzie,

>

> Yes,, Rocephin is very expensive. 1g of Rocephin is $200 and

> the flushes of saline and heparin additional $28.00. The PICC line

> placed in at a local hospital was $2,500. Maybe IV is less expensive.

> Lizzie, 8 months is truly a long time. PICC line is usually prefere

> to be placed into the R arm, less risks. The tip end just above the

> heart in the Superior Vena Cava. The drip took about 4o min

> 1time/day.Good luck with finding a way. I think there is a company

> that will donate medications to those who cannot afford it. I am

> sorry I cannot rember where I read it. The name started with R, maybe

> someone else knows.

> Did you, Lizzie, see any improvement of your symptoms? What were

> your symptoms? Are you considered to be Lyme free? How do you feel?

> Did you worry about getting Candida with such a long course of

> Rocephin treatments. How many G? 1g or 2g? My main symptoms have been

> nerve pain, painful contractions, extreme sensitivity to cold drafts

> and airconditioning. I also have vasospasm and neuropathy. After the

> acute Lyme diagnosiss, this August, my symptoms flared up even more

> and I also developed chest pains, profuse sweats lasting two months,

> irritability, moodiness and severe sleep problems. My memory isn't

> that good and I have diffculty with concentration. English is my

> second language so the mispelled words have nothing to do with Lyme.

> Thank you for your reply.

>

>

[Guest guest]

Lizzie,

And after 8 months how are you now? What meds are you taking now? Have you

ever heard of people relocating to get in office treatments by an out of

state doctor? If I do this, I¹m estimating that it is going to cost me

about 8,000 or more a month out of pocket.

On 12/14/05 10:19 PM, " " <betneal@...> wrote:

>

>> >

>> > Hello to all,

>> >

>> > My name is , I'm 33 yrs old, have been ill on and off for 8

> years

>> > with no diagnosis, and I have recently been diagnosed with Lyme

> Disease. My

>> > diagnosis was made based on symptoms and then was verified with

> results from

>> > the Bowen Q-RiBb test. Anyway, I am about to temporarily relocate

> from my

>> > home in the Chicago suburbs to Kansas City MO to begin extremely

> rigorous IV

>> > treatment. The doctor that I am working with is brilliant and I

> have all

>> > the confidence in the world with her but I am very nervous about the

>> > finances involved. Since she is out of network the costs are very

> high and

>> > my insurance is estimating to pay about 40 percent. I was just

> wondering

>> > if anybody else is seeing an out of network doctor and what the out of

>> > pocket costs for you are? AT this point, I don't even know what to

> expect

>> > because I don't know what standard charges for this type of

> treatment are?

>> > What can I expect to pay? What are others paying for IV treatment

> with out

>> > of network doctors. By the way, all my IV treatments will be done

> in the

>> > physicians clinic, twice a day seven days a week. I am so desperate

> to get

>> > well and but at the same time I am scared to death of the possibility of

>> > going into financial ruins. Any input will help, I am desperate!!

>> >

>> >

>> >

[Guest guest]

> >> >

> >> > Hello to all,

> >> >

> >> > My name is , I'm 33 yrs old, have been ill on and off

for 8

> > years

> >> > with no diagnosis, and I have recently been diagnosed with Lyme

> > Disease. My

> >> > diagnosis was made based on symptoms and then was verified with

> > results from

> >> > the Bowen Q-RiBb test. Anyway, I am about to temporarily relocate

> > from my

> >> > home in the Chicago suburbs to Kansas City MO to begin extremely

> > rigorous IV

> >> > treatment. The doctor that I am working with is brilliant and I

> > have all

> >> > the confidence in the world with her but I am very nervous

about the

> >> > finances involved. Since she is out of network the costs are very

> > high and

> >> > my insurance is estimating to pay about 40 percent. I was just

> > wondering

> >> > if anybody else is seeing an out of network doctor and what the

out of

> >> > pocket costs for you are? AT this point, I don't even know what to

> > expect

> >> > because I don't know what standard charges for this type of

> > treatment are?

> >> > What can I expect to pay? What are others paying for IV treatment

> > with out

> >> > of network doctors. By the way, all my IV treatments will be done

> > in the

> >> > physicians clinic, twice a day seven days a week. I am so

desperate

> > to get

> >> > well and but at the same time I am scared to death of the

possibility of

> >> > going into financial ruins. Any input will help, I am desperate!!

> >> >

> >> >

> >> >

>

[Guest guest]

Lizzie / Group...Do you always know if you have Babesia? Are Babesia symptoms

always present, until treated? Just curious - I tested negative for Babesia,

but positive for Ehrlichia and Lyme. Per my reading, I've never had Babesia

symptoms, but if it lies dormant (like Lyme sometimes does), then " who knows " ?

Tom

[ ] Re: new member

>

> Lizzie,

>

> And after 8 months how are you now? What meds are you taking now?

Have you

> ever heard of people relocating to get in office treatments by an out of

> state doctor? If I do this, I¹m estimating that it is going to cost me

> about 8,000 or more a month out of pocket.

>

>

[Guest guest]

Ignore if this message posts twice, MSN 9 is a major piece of waste. Anyway,

regarding Babesia - (1) are the symptoms always present if you're infected; (2)

is it ever dormant for any period of time, so the person infected may not know

they have it? Just curious - I've tested positive for Ehrlichia and Lyme, never

had any major symptoms of Babesia (and a negative test)...Tom

[ ] Re: new member

>

> Lizzie,

>

> And after 8 months how are you now? What meds are you taking now?

Have you

> ever heard of people relocating to get in office treatments by an out of

> state doctor? If I do this, I¹m estimating that it is going to cost me

> about 8,000 or more a month out of pocket.

>

>

[Guest guest]

>

> hi my name is diane a mom of a 5 yr boy with adhd and autism i hope

to

> learn more about this special needs my son need and hope to make

> friends

>

>

>

> diane

>Welcome. You will learn so much here. I have been on here for about 1

week and Ive learned so much

[Guest guest]

Welcome Diane! There are great files for this group that can get you

up to speed fast. Be sure to read some of the " Love Letters " for

inspiration.

take care

René

>

> >

> > hi my name is diane a mom of a 5 yr boy with adhd and autism i

hope

> to

> > learn more about this special needs my son need and hope to make

> > friends

> >

> >

> >

> > diane

>

>

[Guest guest]

Welcome Diane,

Did your son regress after vaccines?

S S

<tt>

hi my name is diane a mom of a 5 yr boy with adhd and autism i hope to <BR>

learn more about this special needs my son need and hope to make <BR>

friends<BR>

<BR>

<BR>

<BR>

diane<BR>

<BR>

<BR>

<BR>

</tt>

<!-- |**|begin egp html banner|**| -->

<br><br>

<tt>

=======================================================<BR>

[Guest guest]

Welcome Diane! My name is Ann and my son was diagnosed at the age of 4. He

is now 7 1/2. If you need help for diagnosis let us know where you live and

maybe one of us live there too. Ann

( ) new member

hi my name is diane and a mom of 5 son who ahs adhd and austim i cant

work cause he needs someone to be with him all the time i hope to

learn more about the needs and to work with him to understand im

having a hard time to get someont to test him and say in writhing that

he has austim weel i chat more later

diane

[Guest guest]

>

> Welcome Diane! My name is Ann and my son was diagnosed at the age

of 4. He

> is now 7 1/2. If you need help for diagnosis let us know where you

live and

> maybe one of us live there too. Ann

>

> ( ) new member

>

> hi my name is diane and a mom of 5 son who ahs adhd and austim i

cant

> work cause he needs someone to be with him all the time i hope to

> learn more about the needs and to work with him to understand im

> having a hard time to get someont to test him and say in writhing

that

> he has austim weel i chat more later

>

>

> diane

>

i live in prescott arizona

>

>

>

>

>

>

[Guest guest]

Hi Sue and everyone~

Welcome to the group... I am also a newbie.

You brought up your damaged toe joints.... I was wondering if anyone has any

tricks to finding good shoes. I have been wearing mens' shoes (tennies and

oxford type) for 2 years now because my toes won't fit into womens' shoes....

two toes don't even touch the ground level which causes some balance problems.

I would love to hear any brands that you can count on or tricks for your feet.

Thanks!

Jody

straughansusan <straughansusan@...> wrote:

hello to all,

my name is sue i have been suffering with PA for about 15yrs now, my

right hand is badly damaged with it as well as some of my joints in my

toes.. always very tired would love to hear from other sufferers..

[Guest guest]

Hi Sue,

Sorry your part of the group, but welcome.

You didn't give us much of your story, what meds, etc.

Would like to know more about what you've done or not done, what your

rheumatologist has suggested, past problems or positive experiences.

But I guess a big, huge thing in your post that really gets me worked

up is the word " sufferer " I'm not a " sufferer " and will never be. I

may be in search of solutions, or having some days better than others.

But I feel giving in to being a sufferer is too self condemning. We

are all looking for a " cure " . While there doesn't seem to be a magic

pill to make PA go away, there are many different drugs & treatments

that have helped many folks deal with this disease.

I hope you can find something to help you effectively deal with your PA.

Stay Well,

[Guest guest]

hi again, i have just seen a specialist at hospital with my feet, i

am having some special inner soles to go inside my trainers made to

help the toe joints and the rest of my feet

sue

> hello to all,

>

> my name is sue i have been suffering with PA for about 15yrs now,

my

> right hand is badly damaged with it as well as some of my joints

in my

> toes.. always very tired would love to hear from other sufferers..

>

[Guest guest]

..... two toes don't even touch the ground level which causes some

balance problems. I would love to hear any brands that you can count

on or tricks for your feet.

> Thanks!

> Jody

>

Hi Jody and welcome to all our newbies,

I have significant toe damamge with none of my toes touching the

ground.I finally broke down and went to a store that specializes in

special need feet. I told them I knew it would be a challenge but I

wanted something that looked half way decent.They came up with new

balance extra wide walking shoes and finn comfort oxfords and sandals.

It cost me a fortune but hopefully they'll last. I think getting the

proper fit is important and you may need someone trained to do this.

good luck!

Marti

[Guest guest]

Hello Karin..I am JAn and yes the sides can be hard..A alot of us say in here DRINK LOTS OF WATER while on TX..Also PLEASE be sure ot get on anti depressants prior to TX..That is a big plus!! YOu will needlots of rest at times..Foodmay not taste good and you may lose wieght..Some peole suffer very little sides..Being positive is the best attitude to have and to have support from loved ones...If you need anymore infoplease feel free to ask..We are a very informative group and VERY supportive!! Do you have someone to be with you through this?? That too is a plus..You may be irritable..Maybe brain fog(forgetfulness)..These are COMMON!! YOu may feel ike you have the flu especially after a shot.NORMAL!! Like Sharon told someone in here "If you feel liek CRAP then ya done it right"..LOL..It may not be bad on you though ok!! Remember that and Karin it is nice to meet you..Where are you from?? Tell us a little more about yourself ok??karin_steinie

<karin_steinie@...> wrote: hi everyonei'm about to go on a clinical trial with double dose interferon and riba for the1st 3 months, then normal dose after that. i'm occilating between feelingpositive that it's the right thing to do and then freaking out when i read aboutside effects.i guess basically my question is, have you all experienced nasty nasty sideeffects and how have you coped? is staying postive just denial or am i in for atruly rough ride.i'm fairly symptomless, i've elavated ast's but thats about it, the reason i'mstarting the drug program is that my recent ultra sound showed, for the firsttime, liver 'coursening' which apparently is the first stages of liver disease.i always thought i could keep the dragon at bay by eating the right food andlaying off the alcohol

and staying healthy so it was a shock to see that, nope,the virus was still able to attack my liver. i take milk thistle occasionally but not too religiously. is there anything i can do before i start the treatment to buffer some of the potential nastiness?i have type 1a apparently the efficacy of thetreatmentis like 50%. i'm interested in your stories.best wisheskarin Reply Forward Delete Up Thread | Message Index | View Source | Unwrap Lines Message 12442 of 12442 < Previous Message | Next Message > Jan

Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever.

[Guest guest]

Hey Karin, Welcome , my name is and i too have type 1 a. I just started the treatments 6 weeks ago. Jan is right get on anti depressants right away. Being depressed is proably the worse side effect, but if you catch it early the meds well help.I am having some pretty bad side effects ,but once again please try very hard to stay focused. I am very luck to have GREAT man.I have always been very head strong and the meds are tough ,but i am being very optimistic.So please hang in there!! You can e-mail me anytime Robinsbrn7@.... We can do this together.Have to go to work, please keep in touch. And please keep coming back, these people are so awesome!!Janet <jfw4359@...> wrote: Hello Karin..I am JAn and yes the sides can be hard..A alot of us say in here DRINK LOTS OF WATER while on TX..Also PLEASE be sure ot get on anti depressants prior to TX..That is a big plus!! YOu will needlots of rest at times..Foodmay not taste good and you may lose wieght..Some peole suffer very little sides..Being positive is the best attitude to have and to have support from loved ones...If you need anymore infoplease feel free to ask..We are a very informative group and VERY supportive!! Do you have someone to be with you through this?? That too is a plus..You may be irritable..Maybe brain fog(forgetfulness)..These are COMMON!! YOu may feel ike you have the flu especially after a shot.NORMAL!! Like Sharon told someone in here "If you feel liek CRAP then ya done it right"..LOL..It may not be bad on you though ok!! Remember that and Karin it is nice to meet you..Where are you from?? Tell us a little more about yourself ok??karin_steinie

<karin_steinie@...> wrote: hi everyonei'm about to go on a clinical trial with double dose interferon and riba for the1st 3 months, then normal dose after that. i'm occilating between feelingpositive that it's the right thing to do and then freaking out when i read aboutside effects.i guess basically my question is, have you all experienced nasty nasty sideeffects and how have you coped? is staying postive just denial or am i in for atruly rough ride.i'm fairly symptomless, i've elavated ast's but thats about it, the reason i'mstarting the drug program is that my recent ultra sound showed, for the firsttime, liver 'coursening' which apparently is the first stages of liver disease.i always thought i could keep the dragon at bay by eating the right food andlaying off the alcohol

and staying healthy so it was a shock to see that, nope,the virus was still able to attack my liver. i take milk thistle occasionally but not too religiously. is there anything i can do before i start the treatment to buffer some of the potential nastiness?i have type 1a apparently the efficacy of thetreatmentis like 50%. i'm interested in your stories.best wisheskarin Reply Forward Delete Up Thread | Message Index | View Source | Unwrap Lines Message 12442 of 12442 < Previous Message | Next Message > Jan PhotosRing in the New Year with Photo Calendars. Add photos, events, holidays, whatever.

Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever.

[Guest guest]

tx is an abbreviation for us lazy typists. dx for diagnosis and of course rx for prescription. I, too had it for about 20 years before getting treated. We have had a few from the UK and a few other places, but we're mostly in the US. Welcome, we are in the midst of our winter, I guess it's summer there, yes? Because of what I heard from many others, I talked to my doctor about antidepressants and started them just before starting treatment. I took 5 weeks leave of absence and then worked throughout the rest of the treatment. -dz-karin_steinie <karin_steinie@...> wrote: hi brenda and janet and everyonethanx for replying so swiftly. i'm in sydney australia so when i'm writing i guess you guys are all asleep, it looks as though you are all in the US???i'm at the very first stage of treatment even

though i've had it for about 20 years. i'm seeing a specialist in a couple of weeks and then having another biopsy and then i'm going to wait a few months before i start the program, (how come you call it tx??) i need to work hard now to make some money in case i wont be able to work. are you guys working as well as being on it? how are you coping with that.?the depression thing is a worry. it seems as though this is the most common side effect and are the meds helping you guys??? did you start them before treatment, is this something your doctors suggested?i'm lucky too as i have a very supportive hubby and a gorgeous 5 year old boy. best wisheskarin

[Guest guest]

Hi Karin,

Sorry I wasn't here to welcome you to the board, but right now I'm dealing

with gall bladder issues! Oww!

I'm actually sitting here waiting to talk to the doctor, hoping he'll give

me something to get through this for the next week. I've got a business

training to go to in New Orleans, and I don't want to cancel because of

this!

Anyway, as you can see, we've got a small, intimate group here, and everyone

focuses on being a support for the other. They're good people, too.

So feel free to relax and ask questions. If we don't have the answers,

someone definitely will find it and share it.

Johanna :waving:

---------------------------------------------------------------

Johanna Koskinen - Director/Outreach Coordinator

Toll-free hotline:1.888.436.HEP C (4372)

Local: 1.816.763.4766/ Email: johanna@...

Website: http://www.hepcmo.org

[ ] Re: new member

hi brenda and janet and everyone

thanx for replying so swiftly. i'm in sydney australia so when i'm writing i

guess

you guys are all asleep, it looks as though you are all in the US???

i'm at the very first stage of treatment even though i've had it for about

20

years. i'm seeing a specialist in a couple of weeks and then having

another

biopsy and then i'm going to wait a few months before i start the program,

(how come you call it tx??) i need to work hard now to make some money in

case i wont be able to work. are you guys working as well as being on it?

how

are you coping with that.?

the depression thing is a worry. it seems as though this is the most common

side effect and are the meds helping you guys??? did you start them before

treatment, is this something your doctors suggested?

i'm lucky too as i have a very supportive hubby and a gorgeous 5 year old

boy.

best wishes

karin

hi everyone

>

> i'm about to go on a clinical trial with double dose interferon and riba

for the

>

> 1st 3 months, then normal dose after that. i'm occilating between feeling

> positive that it's the right thing to do and then freaking out when i read

about

>

> side effects.

>

> i guess basically my question is, have you all experienced nasty nasty

side

> effects and how have you coped? is staying postive just denial or am i in

for

a

> truly rough ride.

>

> i'm fairly symptomless, i've elavated ast's but thats about it, the

reason i'm

> starting the drug program is that my recent ultra sound showed, for the

first

> time, liver 'coursening' which apparently is the first stages of liver

disease.

>

> i always thought i could keep the dragon at bay by eating the right food

and

> laying off the alcohol and staying healthy so it was a shock to see that,

nope,

> the virus was still able to attack my liver. i take milk thistle

occasionally but

not

> too religiously. is there anything i can do before i start the treatment

to

buffer

> some of the potential nastiness?

>

> i have type 1a apparently the efficacy of the

> treatment

> is like 50%. i'm interested in your stories.

>

> best wishes

>

> karin

>

>

>

>

>

>

>

>

>

> Reply Forward Delete

>

>

>

> Up Thread | Message Index | View Source | Unwrap Lines Message

12442 of

> 12442 < Previous Message | Next Message >

>

>

>

>

>

>

>

> Jan

>

> ---------------------------------

> Photos

> Ring in the New Year with Photo Calendars. Add photos, events, holidays,

whatever.

>

> ---------------------------------

> ! GROUPS LINKS

>

>

> Visit your group " " on the web.

>

>

[Guest guest]

Most of us have experienced some tough side effects. I found it worst in the very beginning. Once my body got acclimated to it, it wasn't too bad, just a general lack of energy and recurring "flu-like" symptoms of varying degrees. I might suggest seeing about an antidepressant before starting. -dz-karin_steinie <karin_steinie@...> wrote: hi everyonei'm about to go on a clinical trial with double dose interferon and riba for the1st 3 months, then normal dose after that. i'm occilating between feelingpositive that it's the right thing to do and then freaking out when i read aboutside effects.i guess basically my question is, have you all experienced nasty nasty sideeffects and how have you coped? is staying postive just denial or am i in for atruly rough

ride.i'm fairly symptomless, i've elavated ast's but thats about it, the reason i'mstarting the drug program is that my recent ultra sound showed, for the firsttime, liver 'coursening' which apparently is the first stages of liver disease.i always thought i could keep the dragon at bay by eating the right food andlaying off the alcohol and staying healthy so it was a shock to see that, nope,the virus was still able to attack my liver. i take milk thistle occasionally but not too religiously. is there anything i can do before i start the treatment to buffer some of the potential nastiness?i have type 1a apparently the efficacy of thetreatmentis like 50%. i'm interested in your stories.best wisheskarin Reply Forward Delete Up Thread | Message Index | View Source | Unwrap Lines

Message 12442 of 12442 < Previous Message | Next Message >

[Guest guest]

In a message dated 09/01/2006 01:23:27 GMT Standard Time,

straughansusan@... writes:

my name is sue i have been suffering with PA for about 15yrs now, my

right hand is badly damaged with it as well as some of my joints in my

toes.. always very tired would love to hear from other sufferers..

Hi Sue,

Welcome to our humble little....................................ok now pretty

big group. I also have fingers and toes among other things affected by this

disease. I hope we can help you in some way. There are a lot of knowledgeable

and caring people here. So, jump in and tell us a bit about yourself if you

feel up to it.

By the way, I'm , age 48, living in Scotland, I have had P since the

age of 23 and PA started at the age of 30. I'm currently on Enbrel 50mg weekly,

MTX 20mg weekly and Indocid 50mg daily.

Take care,

[Guest guest]

Welcome to the group

Good luck on Feb 1. You'll have to let us know when he gets fitted

for his band.

What kind of issues did you have with his first band? Sounds like you

had quite an ordeal. Hopefully when he gets his DOC Band he'll hit

some nice growth spurts

Mom to Dane (4 yo) and Cece (12 mo) DOC Grads

>

> I am a new member. My son will be getting a DOC Band on Feb. 1st.

> This is his second band. The first was not made right and our

> neurosurgeon told us to take it off (it was not a DOC but from

another

> company). He was casted last week at Cranial Technologies. They

> suggested I join this group as we have been through so much to get to

> this point. It is unbelevable the routes one has to take just to get

> some help for their child.

>

[Guest guest]

Welcome to the group

Good luck on Feb 1. You'll have to let us know when he gets fitted

for his band.

What kind of issues did you have with his first band? Sounds like you

had quite an ordeal. Hopefully when he gets his DOC Band he'll hit

some nice growth spurts

Mom to Dane (4 yo) and Cece (12 mo) DOC Grads

>

> I am a new member. My son will be getting a DOC Band on Feb. 1st.

> This is his second band. The first was not made right and our

> neurosurgeon told us to take it off (it was not a DOC but from

another

> company). He was casted last week at Cranial Technologies. They

> suggested I join this group as we have been through so much to get to

> this point. It is unbelevable the routes one has to take just to get

> some help for their child.

>

[Guest guest]

I am so sorry to hear that your first band was a problem. You can feel

safe with CT, they have an excellent rep. I used CT for my son and

could not be happier. You can check out his pictures and our story at

his website. www.mybandebaby.typepad.com When you get a chance if you

would share your story about the first band it would help others and

give feedback about a location someone might be thinking about using.

CAROLG

>

> I am a new member. My son will be getting a DOC Band on Feb. 1st.

> This is his second band. The first was not made right and our

> neurosurgeon told us to take it off (it was not a DOC but from another

> company). He was casted last week at Cranial Technologies. They

> suggested I join this group as we have been through so much to get to

> this point. It is unbelevable the routes one has to take just to get

> some help for their child.

>