New Member

[Guest guest]

<<> If you are anywhere close to the same viral load

> that I have you need treatment ASAP.>>

I agree. Viral load has nothing to do with treatment, per se.

Some doctors will treat if the viral load is extremely high (and I've heard

of loads well above 24 million).

However, if your liver is good, treatment can cause more problems than the

hep. So you have to weigh things.

You did treatment because you're stage 3, I would assume, regardless of

viral load. I think this pushing of treatment for any reason is a bit much.

And they are using us as little piglets for their research.

I worked on treatment. There are meds to help you keep going. Fatigue and

migraines hit me hardest about month 7 thru the end.

This is all my opinion of course, I'm no doctor.

Alley

[Guest guest]

Hi Sharon , I am . I am 45 and was diagnosed back in 1984 when several

weeks after a dirty needle stick at work, I became so sick I ended up in the

hospital . Well that ended my medical career( premed student working as a

paramedic ) and quick , but back then it was named non a non b hepatitis . I

tried treatment back in 1993 , interferon for 15months but didnt respond . I

treated again in 2003 with peg/riba and then again 2004 with the same medicines

.. I am a 3 time nonresponder and now I sit and wait , treatment isnt an option

now since I have no insurance ..........besides that all my doctors want me to

get evaluated for a transplant . It's great to meet you , and welcome to hep

central . Good luck on treatment , it sounds like your doing great .

New member

Hello,

My name is Sharon. I am 62 and have had HCV for 30 years. My

genotype is 2a and I have stage 1 liver fibrosis. I assume that

this thing was given to me through transfusions I received in 1976,

since I simply do not fit in any other at risk group.

I found out I had hcv in 1999 and about 2 years later, had the first

round of tx with Scherring Plough drugs, length of tx, 6 months. I

relapsed 4 months later. I have just started my second round of tx

with Roche drugs. I am 1 month into a 28 week term of treatment.

The sides, at least at this early time, are not severe. I made it a

bit worse when I forgot I was out of thyroid meds and did not take

them for several weeks. It finally dawned on me and I got my script

filled and am beginning to feel a little better. CRS, I come by it

naturally, being Norsky (lol) and 62 (arrgghh) and on drugs! lol

I like to keep as upbeat as I can, but depression has been a close

friend since childhood. Usually, I just joke my way through a

situation and will continue to fight the BUG for all the years I

have left, which I have planned to be MANY!

That's my story and so what's yours?

Sharon

It's a pleasure having you join in our conversations. We hope you have found

the support you need with us.

If you are using email for your posts, for easy access to our group, just

click the link-- http://groups.yahoo.com/group/Hepatitis_C_Central/

Happy Posting

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

[Guest guest]

Hi

I found them on personal life media.com If you go to the blogs in the

beginning you will see a pdf file Hope this helps

Brennan

>

> Hi, I just started to listen to the podcast and I love what has

to say!! I am just starting

> this journey. Can anyone tell me where I can find the worksheet

mentions in the

> podcasts? I would like to use them but I can't find them.

> Thanks!

> Sheila

>

[Guest guest]

I loved that book Fat is a Feminist Issue and I have read Geneen Roth as well.

I didn't find her a good fit for me as somehow I am really willing to indulge

and I got a little carried away. I am re-evaluating a lot of things and the

onion analogy certainly applies. Layers - peel one off and then you see

another. I head something today on NPR that talked about belief systems. I

have been mulling around thoughts about what I do believe about myself with

food, especially sweets, and overeating and consistency overall (exercise and

food choices and other things too) - this person stated that if you aren't sure

what you believe - look at what you DO - well, that really has me thinking. If

what I do after a period of good choices is to make a series of bad ones - what

does that mean? Why do I consistently come back to eating poorly? Does it mean

I don't believe I'm worthy of healthy eating and a healthy body? Does it mean I

just really like sugar and use it as reward.

Does it mean I believe there is lack in the world so I better eat it now

because if I don't it won't be there later? I haven't come up with an answer

yet - but I'm working on it.

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

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Hi all- I'm new here.

I've been very motivated by 's podcasts. I'm 38 and have had a

lifelong battle with weight. I'm now at my heaviest ever and am

sincerely trying to lose 50 pounds by June 15 (six months!). I'm

happily married with two kids but had a VERY stressful year in 07.

Glad to say, things have turned around and want to make a permanent

healthy change (yo-yo was my middle name). Also am wanting to provide

a healthy role model to my two daughters (age 8 and 11). I really

think IOWL makes more sense than anything I've tried before (and I

have tried them all). This is my first time joining an online support

group. I've really enjoyed reading your posts and in many ways I am

right there with you! Plus- I am yet another Kim so to add to the

list of Kim and Miss Kim, I guess I can be Kimmie H!

Thanks!

[Guest guest]

Hi Sam,Welcome to the group. Our daughter received her 1st cast at 25 months of age. Her main curve was at 80* and her rotation was extreme. She also has a few vertebrate that are uneven due to the curve inhibiting the growth. After 4 casts her main curve is down to 40*, but her upper and lower curves, as well as her rotation are almost at 0*. We are currently taking a 'cast-break' and we are in a brace for the summer. She will go back into a cast at the end of August.We are being treated in Salt Lake City Shriners (SLC) and the doctor there feels we will get additional correction in a few more casts. It just takes time, since we missed the rapid growth period.Our daughter will never have a straight spine, but she most likely has avoided surgery and has a 'normal' body shape. If she does need

surgery, we have bought ourselves a few years time to allow her body to grow.You can send your child's medical info/xrays to a Mehta doctor and they will review them and let you know if they believe he is a candidate for casting.Liz, Mom to Keira - 3 yrs in 1st brace after 4 casts in SLC Subject: New memberTo: infantile_scoliosis Date: Thursday, July 30, 2009, 12:10 PM

Hello All,

We are a new member to Infantile Scoliosis group and very much

appreciate any help you can provide us to better understand various

treatment options available to treat scoliosis on my 27 month old son.

First, a little background on where we are with my son's scoliosis.

His initial diagnosis was confirmed at the age of six months. The

initial MRI and x-rays showed that the bone structure and spine were

normal and free from any defect. So weak muscles were flagged as the

main contributor to his scoliosis. Because of this, the proposed

initial treatment was to observe combined with physical therapy and

stretch exercises. This continued for another few months with his

scoliosis getting worse at each subsequent visit. The next treatment

proposed was to use a Boston Brace that he wears 20-24 hrs a day. The

follow-up checkup after that showed that the brace had some success in

slowing down his scoliosis progression but had minimal effect in

correcting it. The next suggestion was to augment the Boston Brace

with a ton Brace during night. We have been using the

combination of the two braces to date for about six months now.

Prognosis, No Change. I guess that in itself is a good news but all

that has been able to accomplish is to slow down the scoliosis.

What is disappointing is that his most recent x-ray is showing that

few of his vertebrate bones are growing unevenly due to uneven

pressure caused by his scoliosis. So, now we have taken a step

backward.

Right from the beginning, me and my wife have been very clear with the

doctor that we are interested in a very aggressive treatment as early

as possible because we did not want to lose any time and anything good

that we might have had on our side. It also seemed logical that

treating the scoliosis early should be relatively easier with better

possible outcome. Instead, the approach of the doctor has been very

conservative and taking action only when things were clearly going the

wrong direction. Also, the lack of sharing timely and correct

information on his diagnosis has been frustrating.

Bottom line, I want to avoid the need for a spinal surgery, fusion and

alike. And I do not want to lose any more precious time and miss an

opportunity.

So I have come across the CAST group during my Internet research. I

have already read the treatment paper published by Dr Mehta (Growth as

a corrective force in the early treatment of progressive infantile

scoliosis). It looks very promising and may be even that magical

treatment that we are looking for. However, before we dive into this I

appreciate it if the CAST members can share their experiences with Dr.

Mehta's method. Success stories are encouraging, but I am also

interested in learning about what did not work!

Thank you for sharing your thoughts with us.

Sam

[Guest guest]

Hello ,

Thank you replying back. My Son's COBB last time it was measured (about 6 months

ago)was 29*. The last two recent x-rays were taken with the charlston brace on

and it was 10* and still 29* with the Boston Brace.

We are living in the Boston area but we are open to take him to any center that

has the most experience dealing with infentile scoliosis.

Last week we had an appointment with Dr. Masso at Shriner's hospital located in

Springfield, MA. Dr. Masso said that he has done body casting before but not

using Dr. Mehta's method. So, that leads me to believe that they do not have all

the right equipment for this. I rather go to a center that has a lot of

experience with Inf. Sc. anyway.

Which center did you take your son for treatment?

Thanks- Sam

>

>

> Hi Sam,

>

> Welcome!

>

>

>

> Can I ask your son's COBB measurements? Also, where are you located?

>

>

>

> My son, Noah, started casting a little older too (21 months) and we've had

great sucess. Noah also had a curve at only 6 months old.

>

>

>

> Noah started casting at 36* and is now at 9* in a brace.

>

> ~

> Noah 4 years old

> 9 months of casting in SLC; Currently on month 18 of bracing

> And Mariella 6 months old currently waiting and watching at 11*

>

>

>

>

>

>

> To: infantile_scoliosis

> From: sbehta@...

> Date: Thu, 30 Jul 2009 12:10:24 -0700

> Subject: New member

>

>

>

>

>

>

> Hello All,

> We are a new member to Infantile Scoliosis group and very much

> appreciate any help you can provide us to better understand various

> treatment options available to treat scoliosis on my 27 month old son.

>

> First, a little background on where we are with my son's scoliosis.

> His initial diagnosis was confirmed at the age of six months. The

> initial MRI and x-rays showed that the bone structure and spine were

> normal and free from any defect. So weak muscles were flagged as the

> main contributor to his scoliosis. Because of this, the proposed

> initial treatment was to observe combined with physical therapy and

> stretch exercises. This continued for another few months with his

> scoliosis getting worse at each subsequent visit. The next treatment

> proposed was to use a Boston Brace that he wears 20-24 hrs a day. The

> follow-up checkup after that showed that the brace had some success in

> slowing down his scoliosis progression but had minimal effect in

> correcting it. The next suggestion was to augment the Boston Brace

> with a ton Brace during night. We have been using the

> combination of the two braces to date for about six months now.

> Prognosis, No Change. I guess that in itself is a good news but all

> that has been able to accomplish is to slow down the scoliosis.

>

> What is disappointing is that his most recent x-ray is showing that

> few of his vertebrate bones are growing unevenly due to uneven

> pressure caused by his scoliosis. So, now we have taken a step

> backward.

>

> Right from the beginning, me and my wife have been very clear with the

> doctor that we are interested in a very aggressive treatment as early

> as possible because we did not want to lose any time and anything good

> that we might have had on our side. It also seemed logical that

> treating the scoliosis early should be relatively easier with better

> possible outcome. Instead, the approach of the doctor has been very

> conservative and taking action only when things were clearly going the

> wrong direction. Also, the lack of sharing timely and correct

> information on his diagnosis has been frustrating.

>

> Bottom line, I want to avoid the need for a spinal surgery, fusion and

> alike. And I do not want to lose any more precious time and miss an

> opportunity.

>

> So I have come across the CAST group during my Internet research. I

> have already read the treatment paper published by Dr Mehta (Growth as

> a corrective force in the early treatment of progressive infantile

> scoliosis). It looks very promising and may be even that magical

> treatment that we are looking for. However, before we dive into this I

> appreciate it if the CAST members can share their experiences with Dr.

> Mehta's method. Success stories are encouraging, but I am also

> interested in learning about what did not work!

>

> Thank you for sharing your thoughts with us.

> Sam

>

>

>

>

>

>

>

>

> _________________________________________________________________

> Windows Live™ Hotmail®: Search, add, and share the web's latest sports videos.

Check it out.

>

http://www.windowslive.com/Online/Hotmail/Campaign/QuickAdd?ocid=TXT_TAGLM_WL_QA\

_HM_sports_videos_072009 & cat=sports

>

[Guest guest]

Welcome

First off, they should determine whether the scoliosis is idiopathic (unknown cause) or congenital (bone malformations) in nature. I believe the only complete way to tell this is with an MRI. When you meet with these doctors, I would push to have an MRI as soon as possible. It is important to decipher which your child has because the treatments can be so different from one another.

Then, I don't know your financial situation, but if you are near a Shriner's Hospital, I would get going on the application process to have an opinion through them (it can sometimes take months to get an initial appointment). Shriner's is a "free" service, and I know for us, was the only option we had for the treatment our daughter needs.

I'm new here too and my daughter's scoliosis is congenital, she has a partial vertabra between T8 and T9, so casting wouldn't have helped her, since she has a "deformed" bone, that is the problem that needs to be corrected. I joined because she is having surgery on 9/11 to remove the partial vertabra and will be casted for 3-4 mo afterwards. I was looking for advice on that process and how to deal with casts.

There are many awesome families on here, and I'm sure they will chime in with advice as well.

Jane, Portland, Oregon

Grace, almost 3 yrs (9/6), moderate Omphalocele fully repaired, congenital scoliosis.

To: infantile_scoliosis Sent: Wednesday, August 12, 2009 8:20:17 AMSubject: New Member

Hello Everyone,To introduce myself to the group, my name is Dave and my wife and I just received news that my 5 month old son has a 40 degree curve in his spine; I am sorry but I don't understand the specifics of that curve yet. My first son had some issues so we noticed early on that had torticolis, which he has been receiving physicial therapy for. At 3 months, his pediatrician suggested that we see a pediatric orthopedic surgeon to make sure that everything was ok and he sent us for the x-ray. Once getting news that the curve was 40 degrees, the surgeon informed us that the situation was too severe for him to handle so he referred us to a spinal surgeon. We have scheduled two appointments, one with a Dr Vitale (ped ortho surgeon) and a Dr Errico (spinal surgeon) both in NYC. The appointments are approaching but neither my pediatrician nor the radiologist have ever seen this before and of course they do not have any real

information. I washoping to reach out to the group for any advice and to hear back in case anyone has had a similar situation. It sounds like the casting has worked for some of you and I am not sure (1) whether my doctor will do it (2) whether I should do it immediately rather than waiting to see if the curve worsens; and (3) what the percentage of early onset patients is whose curve resolves on its own. I would appreciate any help.Thanks!Dave F