New member

[Guest guest]

---

Hi, Betsy, Im Valarie, mom to 4 kids, 3 of them with CVID.

My kids have low IGG, IGA, and IGM, and very little or no response to

most of their vaccinations. My 9 yr old and 4 yr old have been on IVIG

since April 06, and my 6 yr old just started in Feb.

We have seen a marked improvement in their infection rate since

beginning. Of my sons, we would often say they got better but never

well. Meaning.......they would be sick sick sick, and then get LESS

sick, but never really UNsick:)........if that makes any sense to you.

A few months after we started IVIG......I was startled to see that my

4 yr old no longer had constant green snot. This may not be exciting

to others, but in 4 yrs, I had NEVER seen his nose not be running and

stuffed:) He lived on prednisone for his first 4 yrs.....and hasnt

been on it since last May. Weve been very pleased.

Our pulmo first noted the immune deficiency. We watched for a little

while, and tried daily antibiotics, hoping it would be grown out of.

We went to an allergist/immuno for allergy testing, who told me he

didnt care what the labs said, nothing was wrong with my kids, and

wanted me to take them off all their meds!! I was very frustrated.

Then, my 9 yr old was admitted last Jan of 06, and in checking her for

celiac, found her IG's to all be low. So off we went to infectious

disease. This guy is SUPER nice, and ran all the testing again, and

says our " working diagnosis " is CVID. Meaning.....it could always

change. It could get better, it could get worse.....more things can

crop up. But for NOW, we have CVID and that is what we are treating.

No more waiting. And my kids quality of life has SO improved.

Best of luck!!

In , Betsy Furler <bfurler@...> wrote:

>

> Thank you so much Dale! What you wrote makes me feel so much

better! I am very impatient and have worried that this child git sick

too easily since he was tiny and the doc always said he was just " one

of those kids " . His neurologist (he has migraines - started at 17

months) referred him to the immunologist b/c every time she saw him or

talked to me he was sick. We saw the pedi today - he is sick with a

virus we think- and she basically said what you said - there is

definitely a problem if he is not making titers to his antibodies. I

feel better that I am on this list and feel connected! Thanks so much!!!

> Betsy

>

> Dale Weatherford <dale@...> wrote:

> > Today I talked to the fellow at the clinic, he was more helpful and

> > said that Sam had not developed antibodies to his vaccinations - he

> > asked me twice if he had been immunized. He does not think it is a

> > specific antibody deficiency but something like CVID. Now I am

> > really confused.

>

> The office is sending me all the lab work and we go

> > back for the lab draw on the 30th and to see the doc on April 17th.

>

> Betsy, sounds like you are in the right place to get some answers. Sam

> is definitely dealing with a Primary Immune Deficiency. When a child

> doesn't build titers to his vaccinations -- something is wrong with the

> B-cells.

>

> Now, what I've found with immunologist is that as a group they are

> pretty closed-mouthed until they finish all the testing. That drives

> parents crazy! I had a list of 5,000 questions and I couldn't get a

> single one of them answered until they had drawn blood twice and

made me

> wait for answers. I thought I would go insane waiting. After the first

> one, my pediatrician told me " We think it's an immune deficiency,

but we

> need to re-test in 6 months to be sure. But don't go researching that,

> because it's pretty scary stuff and you'll just worry. " You are darn

> tooting I was worried. I read everything I could get my hands on. So,

> when the diagnosis was given, I already knew what we were up against.

>

> I believe that you are in the right place to get that information and

> prepare yourself for whatever diagnosis this turns out to be. There's

> not a whole lot of difference between a specific antibody defiicency

and

> CVID. The only difference is that generally a " specific antibody

> deficiency means you are missing one Immunoglobulin, whereas CVID

> generally means that you are missing two or more. But missing is

> missing. If Sam is not building antibodies -- something is definitely

> missing. Your immunologist may be trying to pin down exactly what is

> going on -- the immune system is very complicated and it makes a lot of

> difference whether it's B-cells or T-cells that are not working. It

> makes a whole world of difference whether you have a little IgA or no

> IgA. All of those details make a difference in the diagnosis and

> prognosis for Sam. Your immunologist may just be one of those guys that

> doesn't like to give out information until he's got it all figured out.

> So, if I were you I would wait until mid April and find out what

> he/she has to say.

>

> If at that time, what he has to say, doesn't add up to what you've

> learned so far by your research, I would look for a second opinion.

>

> More than likely, once the Immunologist completes his testing, he will

> make recommendations for Sam to start therapy -- either IVIG or SCIG.

>

> Like I made the suggestion to our other newest member, I highly

> recommend that you contact the Immune Deficiency Foundation at

> 1-800-296-4433 and ask for their Patient and Family Handbook so that

you

> can start learning about the different PIDs and possible therapy

options.

>

> Best wishes. Really, really, the diagnosis phase is the hardest. Once

> you get the diagnosis -- the treatment takes some getting used to, but

> then you start moving into find a new normal that's generally pretty

> livable! My daughter was 11 when she became suddenly ill and never

> got better. She was just piggy-backing one infection on top of another

> continuously. She was bedfast for about 6 months before we finally got

> the diagnosis. She was finally diagnosed with CVID at the age of 13 and

> started IVIG. It took several years for her to regain her strength, but

> she managed to graduate with her peers and went to college, took

> Cardiokickboxing in college and partied and played just like all the

> other college kids (maybe too much!). In other words, she went ahead

> with her life. She's married now and doing great.

>

> Hope that encourages you some,

> In His service,

> dale

>

>

>

>

>

>

[Guest guest]

Welcome new parents!

Betsy,

You've really been through a rough time. Unfortunately, the burden often falls

on the parent's shoulders to get appropriate care -- as you know.

I'm not sure how far you are to Denver, but National Jewish Medical & Research

Center has a great reputation for immunology. They have a nurse hotline that is

free, if you are interested in making an inquiry. There is no cost to you and

it is confidential. Call 1-800-222-LUNG (5864). Also, there is the Immune

Deficiency Foundation and Jeffery Modell Foundation, if you need more help.

mom to Dani, 5, CVID

[Guest guest]

This is just my honest opinion, but instead of waiting for 3 months, I'd go

ahead and get a second opinion. Regardless of if Dr. Lonstein is a good doctor

or not, maybe he is not really familiar with treatment of infantile scoli. You

might want to ask him how many children he's successfully treated with infatnile

scoli.

My son, Evan progressed greatly in just a month when he was first diagnosed.

We obtained three opinions, one being " wait and see " , one being bracing/surgery

and one being POP jackets (early treatment-casting) at Shriner's in Erie, PA.

Has Noah had an MRI done to rule out any congenital issues?

Have you ordered the DVD off the ISOP website? It was very helpful to us when

we were all so new to this.

Good luck with whatever you decide to do for Noah, keep us posted.

Feel free to call me or email me anytime.

My son, Evan's story is up on the ISOP website.

and Evan

wrote:

Hello,

I'm new to the group. I'm very glad I found you - there's not a lot of

info. on infantile scoliosis out there. My son, Noah, has been

diagnosed with Infantile Scoliosis. He is 21 months old. We were

referred by his pediatrican to Dr. Lonstein at TC Spine Center in

Mpls. I'm told he is a good doctor. We've had one appt. so far.

Noah's curve is 30 degrees and his RVAD is 20. The doctor says Noah

is " right on the fence " as far as determining whether or not his curve

is likely to progress. We are to go back in 3 months to have a new

set of x-rays. If he is progressing - I will definately want to

discuss casting as an option. A lot of what I'm reading has indicated

that Noah's numbers are not good, so I'm trying to prepare myself for

the worst without panicking. Any thoughts or advice is appreciated.

Thanks!

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

This is just my honest opinion, but instead of waiting for 3 months, I'd go

ahead and get a second opinion. Regardless of if Dr. Lonstein is a good doctor

or not, maybe he is not really familiar with treatment of infantile scoli. You

might want to ask him how many children he's successfully treated with infatnile

scoli.

My son, Evan progressed greatly in just a month when he was first diagnosed.

We obtained three opinions, one being " wait and see " , one being bracing/surgery

and one being POP jackets (early treatment-casting) at Shriner's in Erie, PA.

Has Noah had an MRI done to rule out any congenital issues?

Have you ordered the DVD off the ISOP website? It was very helpful to us when

we were all so new to this.

Good luck with whatever you decide to do for Noah, keep us posted.

Feel free to call me or email me anytime.

My son, Evan's story is up on the ISOP website.

and Evan

wrote:

Hello,

I'm new to the group. I'm very glad I found you - there's not a lot of

info. on infantile scoliosis out there. My son, Noah, has been

diagnosed with Infantile Scoliosis. He is 21 months old. We were

referred by his pediatrican to Dr. Lonstein at TC Spine Center in

Mpls. I'm told he is a good doctor. We've had one appt. so far.

Noah's curve is 30 degrees and his RVAD is 20. The doctor says Noah

is " right on the fence " as far as determining whether or not his curve

is likely to progress. We are to go back in 3 months to have a new

set of x-rays. If he is progressing - I will definately want to

discuss casting as an option. A lot of what I'm reading has indicated

that Noah's numbers are not good, so I'm trying to prepare myself for

the worst without panicking. Any thoughts or advice is appreciated.

Thanks!

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

Hi ,

I am assuming you are from the midwest. We live in northcentral

WI. We were informed of Dr. Lonstein. But based on the information

I had read about him we were not comfortable seeking an opinion from

him. We saw every pediatric orthopedist in the state of WI, none who

knew how to cast using Dr. Mehta's method and none interested in

learning a method that has just saved Max from having growing rod

surgery at the age of 12 months. Max is also 21 months old,

diagnosed at 6 months (no other medical condition), we waited too

long to get Max in a cast. We tried everything to not cast him as

we as parents we more scared of the thought of having Max in a cast.

This was our BIGGEST mistake. What could've corrected sooner, ended

up doubling in 3 months in a brace. We are fortunate to have found

Dr. Sturm at Shriner's Chicago who is the only orthopedist in the

midwest (we are aware of) casting using Dr. Mehta's method and who

has attended the last ETTP last fall in PA. He truly wants to help

our children with infantile scoliosis. He is honest and wants to

rule out every reasonable treatment option before major surgery.

Based on our experience with Max, I urge you not to wait 3 months.

Based on the degree of Noah's curve, I would not take it lightly.

Noah still has atleast 3 months of rapid growth. Early Treatment is

so important. I know Dr. Sturm has casted toddler aged children for

first time castings. Max was 13 months when he got his first cast.

Please e-mail me privately and I'd love to speak with you if you

would like we can talk over the phone. Our first otrhopedist told us

when Max's curve was 27 degrees to wait and see and come back in 6

months. We first casted Max when it got upto 54 degrees and I thank

God I didn't settle for the first, second, or third docs' treatment

recommendation.

Aekta (mother of Maxwell 21 months-4th cast)

>

> Hello,

> I'm new to the group. I'm very glad I found you - there's not a

lot of

> info. on infantile scoliosis out there. My son, Noah, has been

> diagnosed with Infantile Scoliosis. He is 21 months old. We were

> referred by his pediatrican to Dr. Lonstein at TC Spine Center in

> Mpls. I'm told he is a good doctor. We've had one appt. so far.

> Noah's curve is 30 degrees and his RVAD is 20. The doctor says

Noah

> is " right on the fence " as far as determining whether or not his

curve

> is likely to progress. We are to go back in 3 months to have a

new

> set of x-rays. If he is progressing - I will definately want to

> discuss casting as an option. A lot of what I'm reading has

indicated

> that Noah's numbers are not good, so I'm trying to prepare myself

for

> the worst without panicking. Any thoughts or advice is

appreciated.

> Thanks!

>

>

[Guest guest]

Hi ,

I am assuming you are from the midwest. We live in northcentral

WI. We were informed of Dr. Lonstein. But based on the information

I had read about him we were not comfortable seeking an opinion from

him. We saw every pediatric orthopedist in the state of WI, none who

knew how to cast using Dr. Mehta's method and none interested in

learning a method that has just saved Max from having growing rod

surgery at the age of 12 months. Max is also 21 months old,

diagnosed at 6 months (no other medical condition), we waited too

long to get Max in a cast. We tried everything to not cast him as

we as parents we more scared of the thought of having Max in a cast.

This was our BIGGEST mistake. What could've corrected sooner, ended

up doubling in 3 months in a brace. We are fortunate to have found

Dr. Sturm at Shriner's Chicago who is the only orthopedist in the

midwest (we are aware of) casting using Dr. Mehta's method and who

has attended the last ETTP last fall in PA. He truly wants to help

our children with infantile scoliosis. He is honest and wants to

rule out every reasonable treatment option before major surgery.

Based on our experience with Max, I urge you not to wait 3 months.

Based on the degree of Noah's curve, I would not take it lightly.

Noah still has atleast 3 months of rapid growth. Early Treatment is

so important. I know Dr. Sturm has casted toddler aged children for

first time castings. Max was 13 months when he got his first cast.

Please e-mail me privately and I'd love to speak with you if you

would like we can talk over the phone. Our first otrhopedist told us

when Max's curve was 27 degrees to wait and see and come back in 6

months. We first casted Max when it got upto 54 degrees and I thank

God I didn't settle for the first, second, or third docs' treatment

recommendation.

Aekta (mother of Maxwell 21 months-4th cast)

>

> Hello,

> I'm new to the group. I'm very glad I found you - there's not a

lot of

> info. on infantile scoliosis out there. My son, Noah, has been

> diagnosed with Infantile Scoliosis. He is 21 months old. We were

> referred by his pediatrican to Dr. Lonstein at TC Spine Center in

> Mpls. I'm told he is a good doctor. We've had one appt. so far.

> Noah's curve is 30 degrees and his RVAD is 20. The doctor says

Noah

> is " right on the fence " as far as determining whether or not his

curve

> is likely to progress. We are to go back in 3 months to have a

new

> set of x-rays. If he is progressing - I will definately want to

> discuss casting as an option. A lot of what I'm reading has

indicated

> that Noah's numbers are not good, so I'm trying to prepare myself

for

> the worst without panicking. Any thoughts or advice is

appreciated.

> Thanks!

>

>

[Guest guest]

I would not wait, if things get worse they can progress really quickly. If you

are looking for a doctor who will cast, we go to Children's Hospital of

Wisconsin in Milwaukee. We have been very happy with Dr. Thometz, although I

know he would not cast another member of this site's child. I will say that he

does not have the best bed side manner, he's not rude just very quiet I would

say. Feel free to email me privately if you have more

questions--cesser@....

________________________________

From: infantile_scoliosis on behalf of

Sent: Fri 4/13/2007 2:54 PM

To: infantile_scoliosis

Subject: New Member

Hello,

I'm new to the group. I'm very glad I found you - there's not a lot of

info. on infantile scoliosis out there. My son, Noah, has been

diagnosed with Infantile Scoliosis. He is 21 months old. We were

referred by his pediatrican to Dr. Lonstein at TC Spine Center in

Mpls. I'm told he is a good doctor. We've had one appt. so far.

Noah's curve is 30 degrees and his RVAD is 20. The doctor says Noah

is " right on the fence " as far as determining whether or not his curve

is likely to progress. We are to go back in 3 months to have a new

set of x-rays. If he is progressing - I will definately want to

discuss casting as an option. A lot of what I'm reading has indicated

that Noah's numbers are not good, so I'm trying to prepare myself for

the worst without panicking. Any thoughts or advice is appreciated.

Thanks!

[Guest guest]

I would not wait, if things get worse they can progress really quickly. If you

are looking for a doctor who will cast, we go to Children's Hospital of

Wisconsin in Milwaukee. We have been very happy with Dr. Thometz, although I

know he would not cast another member of this site's child. I will say that he

does not have the best bed side manner, he's not rude just very quiet I would

say. Feel free to email me privately if you have more

questions--cesser@....

________________________________

From: infantile_scoliosis on behalf of

Sent: Fri 4/13/2007 2:54 PM

To: infantile_scoliosis

Subject: New Member

Hello,

I'm new to the group. I'm very glad I found you - there's not a lot of

info. on infantile scoliosis out there. My son, Noah, has been

diagnosed with Infantile Scoliosis. He is 21 months old. We were

referred by his pediatrican to Dr. Lonstein at TC Spine Center in

Mpls. I'm told he is a good doctor. We've had one appt. so far.

Noah's curve is 30 degrees and his RVAD is 20. The doctor says Noah

is " right on the fence " as far as determining whether or not his curve

is likely to progress. We are to go back in 3 months to have a new

set of x-rays. If he is progressing - I will definately want to

discuss casting as an option. A lot of what I'm reading has indicated

that Noah's numbers are not good, so I'm trying to prepare myself for

the worst without panicking. Any thoughts or advice is appreciated.

Thanks!

[Guest guest]

This is just my personal opinion, but I wouldn't wait. I wouldn't wait not only

because it can progress very quickly in a short period of time, but also because

of his age. The best chances of correction occur before the age of two. Once

they hit two, their growth slows down and it makes it harder to correct the

scoliosis. My son was 27 degrees for the longest time - he didn't get worse,

but not any better either. Then all of a sudden he went to 36 degrees. 4 weeks

after that he was at 43 degrees. He was 6 months when he was diagnosed, but we

didn't have him casted until he was 15 months old and I regret that now. He

probably would be finished with treatment by now had we gotten him casted when

he was younger. Anyway, I think it would be worth seeking a second opinion from

a doctor who specializes in infantile scoliosis and who is familiar with the

Mehta techniques of casting.

I saw one of the top orthopedists here in VA, and while I am sure he is

fantastic with adolescent scoliosis, he really didn't know much about infantile

scoliosis and knew nothing of casting.

I'm not sure where you are located, but the two places that offer the casting is

Shriners in Erie, PA and the one in Salt Lake City. Treatment is free through

them.

Good luck!

Noelle (12-2-01)

Ian (8-15-04)

New Member

Hello,

I'm new to the group. I'm very glad I found you - there's not a lot of

info. on infantile scoliosis out there. My son, Noah, has been

diagnosed with Infantile Scoliosis. He is 21 months old. We were

referred by his pediatrican to Dr. Lonstein at TC Spine Center in

Mpls. I'm told he is a good doctor. We've had one appt. so far.

Noah's curve is 30 degrees and his RVAD is 20. The doctor says Noah

is " right on the fence " as far as determining whether or not his curve

is likely to progress. We are to go back in 3 months to have a new

set of x-rays. If he is progressing - I will definately want to

discuss casting as an option. A lot of what I'm reading has indicated

that Noah's numbers are not good, so I'm trying to prepare myself for

the worst without panicking. Any thoughts or advice is appreciated.

Thanks!

[Guest guest]

This is just my personal opinion, but I wouldn't wait. I wouldn't wait not only

because it can progress very quickly in a short period of time, but also because

of his age. The best chances of correction occur before the age of two. Once

they hit two, their growth slows down and it makes it harder to correct the

scoliosis. My son was 27 degrees for the longest time - he didn't get worse,

but not any better either. Then all of a sudden he went to 36 degrees. 4 weeks

after that he was at 43 degrees. He was 6 months when he was diagnosed, but we

didn't have him casted until he was 15 months old and I regret that now. He

probably would be finished with treatment by now had we gotten him casted when

he was younger. Anyway, I think it would be worth seeking a second opinion from

a doctor who specializes in infantile scoliosis and who is familiar with the

Mehta techniques of casting.

I saw one of the top orthopedists here in VA, and while I am sure he is

fantastic with adolescent scoliosis, he really didn't know much about infantile

scoliosis and knew nothing of casting.

I'm not sure where you are located, but the two places that offer the casting is

Shriners in Erie, PA and the one in Salt Lake City. Treatment is free through

them.

Good luck!

Noelle (12-2-01)

Ian (8-15-04)

New Member

Hello,

I'm new to the group. I'm very glad I found you - there's not a lot of

info. on infantile scoliosis out there. My son, Noah, has been

diagnosed with Infantile Scoliosis. He is 21 months old. We were

referred by his pediatrican to Dr. Lonstein at TC Spine Center in

Mpls. I'm told he is a good doctor. We've had one appt. so far.

Noah's curve is 30 degrees and his RVAD is 20. The doctor says Noah

is " right on the fence " as far as determining whether or not his curve

is likely to progress. We are to go back in 3 months to have a new

set of x-rays. If he is progressing - I will definately want to

discuss casting as an option. A lot of what I'm reading has indicated

that Noah's numbers are not good, so I'm trying to prepare myself for

the worst without panicking. Any thoughts or advice is appreciated.

Thanks!

[Guest guest]

Welcome to the group ,

has already told you about the DVD, MRI, etc. All very good

things! Since Noah is near two years old, waiting might not be the best thing.

Dr. Lonstein is a surgeon first. He has many published articles on surgical

techniques. The big question to be answered is if Noah's scoliosis is caused by

congential or neurological factors. The MRI is how they can tell. Many parents

have sought out second and even third opinions before making a decision. If

Noah's scoliosis is not congential, casting may be a wonderful option for him.

Read the website www.infantilescoliosis.org. There is tons of info there,

including stories from many of the families on this group. The docs are still

in wait and watch mode, (and slowly admitting in medical articles that it is not

always best) but we as parents no longer have to with new early treatment via

casting. Hope this helps. Feel free to ask any questions.

Shellie Grant

Moriah's Mom

wrote:

Hello,

I'm new to the group. I'm very glad I found you - there's not a lot of

info. on infantile scoliosis out there. My son, Noah, has been

diagnosed with Infantile Scoliosis. He is 21 months old. We were

referred by his pediatrican to Dr. Lonstein at TC Spine Center in

Mpls. I'm told he is a good doctor. We've had one appt. so far.

Noah's curve is 30 degrees and his RVAD is 20. The doctor says Noah

is " right on the fence " as far as determining whether or not his curve

is likely to progress. We are to go back in 3 months to have a new

set of x-rays. If he is progressing - I will definately want to

discuss casting as an option. A lot of what I'm reading has indicated

that Noah's numbers are not good, so I'm trying to prepare myself for

the worst without panicking. Any thoughts or advice is appreciated.

Thanks!

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

Welcome to the group ,

has already told you about the DVD, MRI, etc. All very good

things! Since Noah is near two years old, waiting might not be the best thing.

Dr. Lonstein is a surgeon first. He has many published articles on surgical

techniques. The big question to be answered is if Noah's scoliosis is caused by

congential or neurological factors. The MRI is how they can tell. Many parents

have sought out second and even third opinions before making a decision. If

Noah's scoliosis is not congential, casting may be a wonderful option for him.

Read the website www.infantilescoliosis.org. There is tons of info there,

including stories from many of the families on this group. The docs are still

in wait and watch mode, (and slowly admitting in medical articles that it is not

always best) but we as parents no longer have to with new early treatment via

casting. Hope this helps. Feel free to ask any questions.

Shellie Grant

Moriah's Mom

wrote:

Hello,

I'm new to the group. I'm very glad I found you - there's not a lot of

info. on infantile scoliosis out there. My son, Noah, has been

diagnosed with Infantile Scoliosis. He is 21 months old. We were

referred by his pediatrican to Dr. Lonstein at TC Spine Center in

Mpls. I'm told he is a good doctor. We've had one appt. so far.

Noah's curve is 30 degrees and his RVAD is 20. The doctor says Noah

is " right on the fence " as far as determining whether or not his curve

is likely to progress. We are to go back in 3 months to have a new

set of x-rays. If he is progressing - I will definately want to

discuss casting as an option. A lot of what I'm reading has indicated

that Noah's numbers are not good, so I'm trying to prepare myself for

the worst without panicking. Any thoughts or advice is appreciated.

Thanks!

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

Thanks for all of the advice! It is very very appreciated. I can't

believe the lack of education/information out there. Here's a

little more about our experience.

Unfortuantely, we learned of Noah's scoliosis at 6 mo. old but

nothing was done. We learned when the hospital did a chest x-ray

for bronchitis. The hospital doc. told me to mention it to our

peditrican. When I brought it up, our ped. said " don't worry about

it - he has a lot of growing to do. We'll take a x-ray when he's 2

yrs. old. " There was no mention of infantile scoliosis and I had

never heard of it. I just thought " ok when he's a teenager we'll

have to watch for this. "

Around 14 mo. I noticed that Noah's " muscles " on the left side of

his back were bigger than the right. I thought this was a side

effect of his Torticollis. (Noah went to physical thearpy from

birth until 10 mo. old for Torticollis.) I didn't even think of the

scoli. I brought it up at his 15 mo appt. The doc. said to remind

him to take an x-ray at 2 years. He didn't even feel Noah's back!

Months passed by and it still bothered me - so I meet with a

different

ped. at a diff. clinic. She did an x-ray and discovered how bad his

scoli was. I'm not an expert, but I've now collected Noahs 6 mo.

chest x-ray and another chest x-ray taken at 16 mo. old (pnemonia)

and his x-ray now at 21 mo. and I can diffently see a progression.

As you can imagine I am very upset that Noah was not monitored early

and now I feel very rushed to get him treatment ASAP.

Kudos to all of you that are working to make sure that

education/information on infantile scoliosis is readily available to

all.

Thanks again!

~

> Hello,

> I'm new to the group. I'm very glad I found you - there's not a

lot of

> info. on infantile scoliosis out there. My son, Noah, has been

> diagnosed with Infantile Scoliosis. He is 21 months old. We were

> referred by his pediatrican to Dr. Lonstein at TC Spine Center in

> Mpls. I'm told he is a good doctor. We've had one appt. so far.

> Noah's curve is 30 degrees and his RVAD is 20. The doctor says

Noah

> is " right on the fence " as far as determining whether or not his

curve

> is likely to progress. We are to go back in 3 months to have a new

> set of x-rays. If he is progressing - I will definately want to

> discuss casting as an option. A lot of what I'm reading has

indicated

> that Noah's numbers are not good, so I'm trying to prepare myself

for

> the worst without panicking. Any thoughts or advice is appreciated.

> Thanks!

>

>

>

>

>

>

>

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

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

>

[Guest guest]

You are in the right place. Shriners in SLC is a wonderful place, you

can contact them yourself if you don't hear anything soon from your

own doctor. Do you know Maddox's current COBB and RVAD measurements

from recent xrays, has he had an MRI to rule out congenital

scoliosis? If the curves are still progressing in brace, it is

important you get a consult with Shriners for them to evaluate Maddox

as a possible canidate for serial casting. I wish you all the best

with your journey. It sounds like you have most certainly been on a

roller coaster since his birth. Please feel free to come here to ask

questions, vent, etc...these mom's have been such a wonderful support

place for me during Matson's diagnoses and treatment so far.

Keep us updated.

STeph

Tyler 4

Matson 16 months (dx 12/06 with 41 degree COBB and 38 RVAD)

Lily 5 months

>

> Hi everyone! My name is Dena, I am Maddox's mom. I guess I will

> share some of our story. Maddox was born 4-4-06, he weighed 3lbs

9oz

> at 37 wks gest. My ob did not suspect iugr until I measured small

at

> that appt. We then did an emergency c-section. At first his

> peditrician thought everything was ok, he was just small due to

> placental complications, but he did not urinate, his fontanels were

> huge, he would not suck, and when they tube fed him he could not

> digest the formula. So he was taken to a children's hospital,

fearing

> that he had some syndrome or something. After we arrived there he

> immmediately started to improve. Within 3 weeks he was nippling all

> his feeds, gaining weight, and we were sent home. He got a clean

bill

> of health from all areas, including genetics. At home he did well

and

> appeared to be catching up on the growth charts as well as

developing

> normally. Until at 6 mos my husband noticed that one side of

Maddox's

> back was not flat(rib hump). After x-rays and appts. and so on, we

> learned that Maddox has scoliosis. Talk about a rough last few

> months. We feel like we have been on an emotional roller coaster.

> Maddox also has some other issues that have come up that lead us to

> believe that he may have a syndrome such as -Silver

syndrome.

> We are currently waiting on an appt. with Endo. and Genetics for

> that. As for the scoliosis, He has been in two different braces for

> the last 7 mos and the curves are still progressing. Our ortho is

> getting in touch will a dr that casts in Salt Lake City to get us a

> second opinion because he does not cast. If there are any parents

out

> there who want to comment, please, we could use the support.

Also,

> I want to say on a positive note, that Maddox is a very bright,

> charming, and handsome little man who we would not trade for the

> world!

>

> Thanks,

> Dena

>

[Guest guest]

Hi welcome to our group . My name is and I am a co-owner of this group . I haven't really told anyone here my story but I think you can benefit from it . I was infected back in 85 because of a dirty needle stick at work , I was a licensed paramedic . Back then it was called non a non b hepatitis . But because it was a transmittable disease I lost my license to practice ( now days they can't take a license away like that) . Suffice it to say , that threw me into a severe bout of depression . I tried to kill myself and ended up in a 30 day coma , upon release from the hospital I tried again . It took 3 yrs before I found the help I needed to cope with the depression . Since then I have treated 4 times , and found that the depression from treatment wasn't nearly as bad as it was labeled . Especially since I have such a good support system going at home with my husband and children . Now days if your depression is under control with medication or therapy treatment is ok . Chronic illness in itself can cause depression , but if the disease is treated successfully the depression resolves itself . If hepatitis c is left untreated it can cause a whole host of other diseases , like iron overload , porphyria cutanea tarda, kidney disease, cryoglobulinemia ,diabetes and so on . So if you feel like you can go through treatment then you should . Otherwise the only treatment you will be able to have is a transplant eventually and even then the new liver will become reinfected . Of course since you already have had suicide attempts you will need to make sure there is family support along with physician support in place just in case . It is hard for people to understand how bad we feel at times , just remind them that just because you don't look sick doesn't mean that you aren't

New member

Hi,I've been reading a lot of messages for a few weeks. I haven't had the guts to send a message. I've been diagnosed with chronic hep c since 1993..I know I was exposed in 1992. Back then few had much info and it took my Dr til 1997 to send me to a Hepatologist. I was only 26. She did a liver biopsy and was pleased to tell me it came out better than she had thought it would. Mild fibrosis...I can't say at that time I understood about the virus. She shed a lot of light and talked to me about interferon, however, I have a long history (since young teenager) of severe depressive disorder, panic disorder, ADHD....many severe suicide attempts that made me a very risky candidate and since I had little knowledge about the virus I opted NOT to risk ever being that depressed. Well, since then I have done my large share of drinking, been on pretty harsh psych meds and then had my gallbladder out in 1992...the surgeon was nice and he took a biopsy while he was in there...he said "you have some scarring and DON'T drink! I never went back to a specialist..my primary care even said no doctor would do the treatment due to my mental history even though I had been stable on meds for many years and followed by a repected Psychiatrist. So yrs pasted and I started noticing I got the flu all the time...felt tired and I used to play tennis, ice skate..lots of energy!!! In the recent year Ive lost weight I can't gain back, my muscles ache, and I came down with a severe left lung infectious pneumonia this past year, then another infection. My Dr was baffled by the pneumonia until she bothered to look at my chart and say "you have hep C?" I'm like "yeah"...she said my immune system was deficient..very comromised and I needed vaccines, recommended I see a specialist. I called a very well respected specialist (one my ex husband went to and did the treatment and is still virus free) I explained my pneumonia and my red palms for years....chest rash, weight loss and that it's been 15 yrs. They wanted to get me in right away but needed a call from my primary care....when I asked my primary care she was angry at me and then literally said she had no liver tests on me...I told her she has years of then and most recently on 5/16/07 ..I was terrified I thought she was losing her mind.....then she laughed at me and said I've had it for so long whats the big rush!!!!!! I did call the physicians licensing board and make a complaint....but I still have to wait til 7/31/07 for my specialist.I also have a dull to more aching pain in my right side....my skin seems to be changing also. I am scared and I was hoping for some feedback, good or bad..honest feedback. I'm scared I won't be able to tolerate the treatment...actually I am most terrified at what my next biopsy is going to come out like.Also, it seems like even the closest people to me just think I am exgaggerating about how sick I feel. I don't complain a lot...but I am tired and fatigued, achey on and off. I feel alone.thanks for listening

[Guest guest]

Hi welcome to our group . My name is and I am a co-owner of this group . I haven't really told anyone here my story but I think you can benefit from it . I was infected back in 85 because of a dirty needle stick at work , I was a licensed paramedic . Back then it was called non a non b hepatitis . But because it was a transmittable disease I lost my license to practice ( now days they can't take a license away like that) . Suffice it to say , that threw me into a severe bout of depression . I tried to kill myself and ended up in a 30 day coma , upon release from the hospital I tried again . It took 3 yrs before I found the help I needed to cope with the depression . Since then I have treated 4 times , and found that the depression from treatment wasn't nearly as bad as it was labeled . Especially since I have such a good support system going at home with my husband and children . Now days if your depression is under control with medication or therapy treatment is ok . Chronic illness in itself can cause depression , but if the disease is treated successfully the depression resolves itself . If hepatitis c is left untreated it can cause a whole host of other diseases , like iron overload , porphyria cutanea tarda, kidney disease, cryoglobulinemia ,diabetes and so on . So if you feel like you can go through treatment then you should . Otherwise the only treatment you will be able to have is a transplant eventually and even then the new liver will become reinfected . Of course since you already have had suicide attempts you will need to make sure there is family support along with physician support in place just in case . It is hard for people to understand how bad we feel at times , just remind them that just because you don't look sick doesn't mean that you aren't

New member

Hi,I've been reading a lot of messages for a few weeks. I haven't had the guts to send a message. I've been diagnosed with chronic hep c since 1993..I know I was exposed in 1992. Back then few had much info and it took my Dr til 1997 to send me to a Hepatologist. I was only 26. She did a liver biopsy and was pleased to tell me it came out better than she had thought it would. Mild fibrosis...I can't say at that time I understood about the virus. She shed a lot of light and talked to me about interferon, however, I have a long history (since young teenager) of severe depressive disorder, panic disorder, ADHD....many severe suicide attempts that made me a very risky candidate and since I had little knowledge about the virus I opted NOT to risk ever being that depressed. Well, since then I have done my large share of drinking, been on pretty harsh psych meds and then had my gallbladder out in 1992...the surgeon was nice and he took a biopsy while he was in there...he said "you have some scarring and DON'T drink! I never went back to a specialist..my primary care even said no doctor would do the treatment due to my mental history even though I had been stable on meds for many years and followed by a repected Psychiatrist. So yrs pasted and I started noticing I got the flu all the time...felt tired and I used to play tennis, ice skate..lots of energy!!! In the recent year Ive lost weight I can't gain back, my muscles ache, and I came down with a severe left lung infectious pneumonia this past year, then another infection. My Dr was baffled by the pneumonia until she bothered to look at my chart and say "you have hep C?" I'm like "yeah"...she said my immune system was deficient..very comromised and I needed vaccines, recommended I see a specialist. I called a very well respected specialist (one my ex husband went to and did the treatment and is still virus free) I explained my pneumonia and my red palms for years....chest rash, weight loss and that it's been 15 yrs. They wanted to get me in right away but needed a call from my primary care....when I asked my primary care she was angry at me and then literally said she had no liver tests on me...I told her she has years of then and most recently on 5/16/07 ..I was terrified I thought she was losing her mind.....then she laughed at me and said I've had it for so long whats the big rush!!!!!! I did call the physicians licensing board and make a complaint....but I still have to wait til 7/31/07 for my specialist.I also have a dull to more aching pain in my right side....my skin seems to be changing also. I am scared and I was hoping for some feedback, good or bad..honest feedback. I'm scared I won't be able to tolerate the treatment...actually I am most terrified at what my next biopsy is going to come out like.Also, it seems like even the closest people to me just think I am exgaggerating about how sick I feel. I don't complain a lot...but I am tired and fatigued, achey on and off. I feel alone.thanks for listening

[Guest guest]

,

You have had a rough time and it sounds like you are ready to make a

change. Everything you have described can be attributed to Hep C.

Although I haven't had any problems with depression, I think that if

you have it under control you should really consider doing the

treatment. I don't know what genotype you are, but since your ex

cleared there is no reason to think that you won't. Treatment is a

commitment that you have to prepare yourself for, so make sure that

you have a support system in place before you start.

Good luck,

Lee

>

> Hi welcome to our group . My name is and I am a co-

owner of this group . I haven't really told anyone here my story but

I think you can benefit from it . I was infected back in 85 because

of a dirty needle stick at work , I was a licensed paramedic . Back

then it was called non a non b hepatitis . But because it was a

transmittable disease I lost my license to practice ( now days they

can't take a license away like that) . Suffice it to say , that threw

me into a severe bout of depression . I tried to kill myself and

ended up in a 30 day coma , upon release from the hospital I tried

again . It took 3 yrs before I found the help I needed to cope with

the depression . Since then I have treated 4 times , and found that

the depression from treatment wasn't nearly as bad as it was

labeled . Especially since I have such a good support system going at

home with my husband and children . Now days if your depression is

under control with medication or therapy treatment is ok . Chronic

illness in itself can cause depression , but if the disease is

treated successfully the depression resolves itself . If hepatitis c

is left untreated it can cause a whole host of other diseases , like

iron overload , porphyria cutanea tarda, kidney disease,

cryoglobulinemia ,diabetes and so on . So if you feel like you can go

through treatment then you should . Otherwise the only treatment you

will be able to have is a transplant eventually and even then the new

liver will become reinfected . Of course since you already have had

suicide attempts you will need to make sure there is family support

along with physician support in place just in case . It is hard for

people to understand how bad we feel at times , just remind them that

just because you don't look sick doesn't mean that you aren't

>

> New member

>

>

> Hi,

> I've been reading a lot of messages for a few weeks. I haven't

had

> the guts to send a message. I've been diagnosed with chronic hep

c

> since 1993..I know I was exposed in 1992. Back then few had much

> info and it took my Dr til 1997 to send me to a Hepatologist. I

was

> only 26. She did a liver biopsy and was pleased to tell me it

came

> out better than she had thought it would. Mild fibrosis...I can't

> say at that time I understood about the virus. She shed a lot of

> light and talked to me about interferon, however, I have a long

> history (since young teenager) of severe depressive disorder,

panic

> disorder, ADHD....many severe suicide attempts that made me a

very

> risky candidate and since I had little knowledge about the virus

I

> opted NOT to risk ever being that depressed. Well, since then I

have

> done my large share of drinking, been on pretty harsh psych meds

and

> then had my gallbladder out in 1992...the surgeon was nice and he

> took a biopsy while he was in there...he said " you have some

> scarring and DON'T drink! I never went back to a specialist..my

> primary care even said no doctor would do the treatment due to my

> mental history even though I had been stable on meds for many

years

> and followed by a repected Psychiatrist. So yrs pasted and I

started

> noticing I got the flu all the time...felt tired and I used to

play

> tennis, ice skate..lots of energy!!! In the recent year Ive lost

> weight I can't gain back, my muscles ache, and I came down with a

> severe left lung infectious pneumonia this past year, then

another

> infection. My Dr was baffled by the pneumonia until she bothered

to

> look at my chart and say " you have hep C? " I'm like " yeah " ...she

> said my immune system was deficient..very comromised and I needed

> vaccines, recommended I see a specialist. I called a very well

> respected specialist (one my ex husband went to and did the

> treatment and is still virus free) I explained my pneumonia and

my

> red palms for years....chest rash, weight loss and that it's been

15

> yrs. They wanted to get me in right away but needed a call from

my

> primary care....when I asked my primary care she was angry at me

and

> then literally said she had no liver tests on me...I told her she

> has years of then and most recently on 5/16/07 ..I was terrified

I

> thought she was losing her mind.....then she laughed at me and

said

> I've had it for so long whats the big rush!!!!!! I did call the

> physicians licensing board and make a complaint....but I still

have

> to wait til 7/31/07 for my specialist.

> I also have a dull to more aching pain in my right side....my

> skin seems to be changing also. I am scared and I was hoping for

> some feedback, good or bad..honest feedback. I'm scared I won't

be

> able to tolerate the treatment...actually I am most terrified at

> what my next biopsy is going to come out like.

> Also, it seems like even the closest people to me just think I

> am exgaggerating about how sick I feel. I don't complain a

lot...but

> I am tired and fatigued, achey on and off. I feel alone.

>

> thanks for listening

>

>

[Guest guest]

Hi Im jax or Jackie, Im one of the co-owners and moderators here and I'd just like to say welcome honey to our group that is now YOUR group too! I have known several ppl who have had serious depression and were able to successfully treat so I know its possible.. I knew one lady who signed a contract with her doc that IF she became so depressed that she even 'thought' about harming herself, she promised to call him day or night.. I spoke with her husband and assurred him that she had promised me too not to hurt herself.. and you know what? She treated and is clear now a year!!! After finishing tx,, a whole year,, she has stopped this virus and she did not have an increase in her depression either.. I didnt know I had hep c when going through a very ugly divorce so my doc put me on celexa and then when I got my diagnosis, he upped my dose BEFORE I started tx and quite honestly, I NEVER had once ounce of

increased depression.. so I know you CAN do this honey,, its all a matter of YOUR CHOICE... We will be here for you and will help you in any way we can.. so DONT be defeated before you even start! jaxbarron924 <barron924@...> wrote: Hi,I've been reading a lot of messages for a few weeks. I haven't had the guts to send a message. I've been diagnosed with chronic hep c since 1993..I know I was exposed in 1992. Back then few had much info and it took my Dr til 1997 to send me

to a Hepatologist. I was only 26. She did a liver biopsy and was pleased to tell me it came out better than she had thought it would. Mild fibrosis...I can't say at that time I understood about the virus. She shed a lot of light and talked to me about interferon, however, I have a long history (since young teenager) of severe depressive disorder, panic disorder, ADHD....many severe suicide attempts that made me a very risky candidate and since I had little knowledge about the virus I opted NOT to risk ever being that depressed. Well, since then I have done my large share of drinking, been on pretty harsh psych meds and then had my gallbladder out in 1992...the surgeon was nice and he took a biopsy while he was in there...he said "you have some scarring and DON'T drink! I never went back to a specialist..my primary care even said no doctor would do the treatment due to my mental history even though I had been

stable on meds for many years and followed by a repected Psychiatrist. So yrs pasted and I started noticing I got the flu all the time...felt tired and I used to play tennis, ice skate..lots of energy!!! In the recent year Ive lost weight I can't gain back, my muscles ache, and I came down with a severe left lung infectious pneumonia this past year, then another infection. My Dr was baffled by the pneumonia until she bothered to look at my chart and say "you have hep C?" I'm like "yeah"...she said my immune system was deficient..very comromised and I needed vaccines, recommended I see a specialist. I called a very well respected specialist (one my ex husband went to and did the treatment and is still virus free) I explained my pneumonia and my red palms for years....chest rash, weight loss and that it's been 15 yrs. They wanted to get me in right away but needed a call from my primary care....when I asked my primary

care she was angry at me and then literally said she had no liver tests on me...I told her she has years of then and most recently on 5/16/07 ..I was terrified I thought she was losing her mind.....then she laughed at me and said I've had it for so long whats the big rush!!!!!! I did call the physicians licensing board and make a complaint....but I still have to wait til 7/31/07 for my specialist.I also have a dull to more aching pain in my right side....my skin seems to be changing also. I am scared and I was hoping for some feedback, good or bad..honest feedback. I'm scared I won't be able to tolerate the treatment...actually I am most terrified at what my next biopsy is going to come out like.Also, it seems like even the closest people to me just think I am exgaggerating about how sick I feel. I don't complain a lot...but I am tired and fatigued, achey on and off. I feel alone.thanks for

listeningJackie

[Guest guest]

Thank you Liz for sharing your story! Im so glad you are still here,, with us cuz we love you!elizabethnv1 <elizabethnv1@...> wrote: Hi welcome to our group . My name is and I am a co-owner of this group . I haven't really told anyone here my story but I think you can benefit from it . I was infected back in 85 because of a dirty needle stick at work , I was a licensed paramedic . Back then it was called non a non b hepatitis . But because it was a transmittable

disease I lost my license to practice ( now days they can't take a license away like that) . Suffice it to say , that threw me into a severe bout of depression . I tried to kill myself and ended up in a 30 day coma , upon release from the hospital I tried again . It took 3 yrs before I found the help I needed to cope with the depression . Since then I have treated 4 times , and found that the depression from treatment wasn't nearly as bad as it was labeled . Especially since I have such a good support system going at home with my husband and children . Now days if your depression is under control with medication or therapy treatment is ok . Chronic illness in itself can cause depression , but if the disease is treated successfully the depression resolves itself . If hepatitis c is left untreated it can cause a whole host of other diseases , like iron overload , porphyria cutanea tarda, kidney disease, cryoglobulinemia ,diabetes and so on . So if you feel

like you can go through treatment then you should . Otherwise the only treatment you will be able to have is a transplant eventually and even then the new liver will become reinfected . Of course since you already have had suicide attempts you will need to make sure there is family support along with physician support in place just in case . It is hard for people to understand how bad we feel at times , just remind them that just because you don't look sick doesn't mean that you aren't New member Hi,I've been reading a lot of messages for a few weeks. I haven't had the guts to send a message. I've been diagnosed with chronic hep c since 1993..I know I was exposed in 1992. Back then few had much info and it took my Dr til 1997 to send me to a Hepatologist. I was only 26. She did a liver biopsy and was pleased to tell me it came out better than she had thought it would. Mild fibrosis...I can't say at that time I understood about the virus. She shed a lot of light and talked to me about interferon, however, I have a long history (since young teenager) of severe depressive disorder, panic disorder, ADHD....many severe suicide attempts that made me a very risky candidate and since I had little knowledge about the virus I opted NOT to

risk ever being that depressed. Well, since then I have done my large share of drinking, been on pretty harsh psych meds and then had my gallbladder out in 1992...the surgeon was nice and he took a biopsy while he was in there...he said "you have some scarring and DON'T drink! I never went back to a specialist..my primary care even said no doctor would do the treatment due to my mental history even though I had been stable on meds for many years and followed by a repected Psychiatrist. So yrs pasted and I started noticing I got the flu all the time...felt tired and I used to play tennis, ice skate..lots of energy!!! In the recent year Ive lost weight I can't gain back, my muscles ache, and I came down with a severe left lung infectious pneumonia this past year, then another infection. My Dr was baffled by the pneumonia until she bothered to look at my chart and say "you have hep C?" I'm like "yeah"...she said my

immune system was deficient..very comromised and I needed vaccines, recommended I see a specialist. I called a very well respected specialist (one my ex husband went to and did the treatment and is still virus free) I explained my pneumonia and my red palms for years....chest rash, weight loss and that it's been 15 yrs. They wanted to get me in right away but needed a call from my primary care....when I asked my primary care she was angry at me and then literally said she had no liver tests on me...I told her she has years of then and most recently on 5/16/07 ..I was terrified I thought she was losing her mind.....then she laughed at me and said I've had it for so long whats the big rush!!!!!! I did call the physicians licensing board and make a complaint....but I still have to wait til 7/31/07 for my specialist.I also have a dull to more aching pain in my right side....my skin seems to be changing also. I am

scared and I was hoping for some feedback, good or bad..honest feedback. I'm scared I won't be able to tolerate the treatment...actually I am most terrified at what my next biopsy is going to come out like.Also, it seems like even the closest people to me just think I am exgaggerating about how sick I feel. I don't complain a lot...but I am tired and fatigued, achey on and off. I feel alone.thanks for listening Jackie

[Guest guest]

Thank you so much for your support. I do not know what geno type I am. My ex was geno 2...Im hoping I am also even though we did not get it from each other...we both had it years before marriage. Im just very concerned with the damage I've already done and I don't know how much more Ive done since 1992. But I do have my ex husband supporting me thru this...we have a three yr old daughter and thank God she is free of the virus. Lee <leecuate@...> wrote: ,You have had a rough time and

it sounds like you are ready to make a change. Everything you have described can be attributed to Hep C. Although I haven't had any problems with depression, I think that if you have it under control you should really consider doing the treatment. I don't know what genotype you are, but since your ex cleared there is no reason to think that you won't. Treatment is a commitment that you have to prepare yourself for, so make sure that you have a support system in place before you start.Good luck,Lee>> Hi welcome to our group . My name is and I am a co-owner of this group . I haven't really told anyone here my story but I think you can benefit from it . I was infected back in 85 because of a dirty needle stick at work , I

was a licensed paramedic . Back then it was called non a non b hepatitis . But because it was a transmittable disease I lost my license to practice ( now days they can't take a license away like that) . Suffice it to say , that threw me into a severe bout of depression . I tried to kill myself and ended up in a 30 day coma , upon release from the hospital I tried again . It took 3 yrs before I found the help I needed to cope with the depression . Since then I have treated 4 times , and found that the depression from treatment wasn't nearly as bad as it was labeled . Especially since I have such a good support system going at home with my husband and children . Now days if your depression is under control with medication or therapy treatment is ok . Chronic illness in itself can cause depression , but if the disease is treated successfully the depression resolves itself . If hepatitis c is left untreated it can cause a

whole host of other diseases , like iron overload , porphyria cutanea tarda, kidney disease, cryoglobulinemia ,diabetes and so on . So if you feel like you can go through treatment then you should . Otherwise the only treatment you will be able to have is a transplant eventually and even then the new liver will become reinfected . Of course since you already have had suicide attempts you will need to make sure there is family support along with physician support in place just in case . It is hard for people to understand how bad we feel at times , just remind them that just because you don't look sick doesn't mean that you aren't> > New member> >

> Hi,> I've been reading a lot of messages for a few weeks. I haven't had > the guts to send a message. I've been diagnosed with chronic hep c > since 1993..I know I was exposed in 1992. Back then few had much > info and it took my Dr til 1997 to send me to a Hepatologist. I was > only 26. She did a liver biopsy and was pleased to tell me it came > out better than she had thought it would. Mild fibrosis...I can't > say at that time I understood about the virus. She shed a lot of > light and talked to me about interferon, however, I have a long > history (since young teenager) of severe depressive disorder, panic > disorder, ADHD....many severe suicide attempts that made me a very > risky candidate and since I had little knowledge about the virus I > opted NOT to risk ever being that depressed. Well, since then I have > done my large share of

drinking, been on pretty harsh psych meds and > then had my gallbladder out in 1992...the surgeon was nice and he > took a biopsy while he was in there...he said "you have some > scarring and DON'T drink! I never went back to a specialist..my > primary care even said no doctor would do the treatment due to my > mental history even though I had been stable on meds for many years > and followed by a repected Psychiatrist. So yrs pasted and I started > noticing I got the flu all the time...felt tired and I used to play > tennis, ice skate..lots of energy!!! In the recent year Ive lost > weight I can't gain back, my muscles ache, and I came down with a > severe left lung infectious pneumonia this past year, then another > infection. My Dr was baffled by the pneumonia until she bothered to > look at my chart and say "you have hep C?" I'm like "yeah"...she >

said my immune system was deficient..very comromised and I needed > vaccines, recommended I see a specialist. I called a very well > respected specialist (one my ex husband went to and did the > treatment and is still virus free) I explained my pneumonia and my > red palms for years....chest rash, weight loss and that it's been 15 > yrs. They wanted to get me in right away but needed a call from my > primary care....when I asked my primary care she was angry at me and > then literally said she had no liver tests on me...I told her she > has years of then and most recently on 5/16/07 ..I was terrified I > thought she was losing her mind.....then she laughed at me and said > I've had it for so long whats the big rush!!!!!! I did call the > physicians licensing board and make a complaint....but I still have > to wait til 7/31/07 for my specialist.> I

also have a dull to more aching pain in my right side....my > skin seems to be changing also. I am scared and I was hoping for > some feedback, good or bad..honest feedback. I'm scared I won't be > able to tolerate the treatment...actually I am most terrified at > what my next biopsy is going to come out like.> Also, it seems like even the closest people to me just think I > am exgaggerating about how sick I feel. I don't complain a lot...but > I am tired and fatigued, achey on and off. I feel alone.> > thanks for listening> >

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[Guest guest]

Thank you so much for sharing with me.....it means alot to me to know their are others who understand. and I just think it is an inspiration that you camr thru all that. I think it's an injustice to say the least that you lost your licence and I hope you have got it back...that was a true injustice!!!! Thank you for sharing again and it really has lifted me. elizabethnv1 <elizabethnv1@...> wrote: Hi welcome to our group . My name is

and I am a co-owner of this group . I haven't really told anyone here my story but I think you can benefit from it . I was infected back in 85 because of a dirty needle stick at work , I was a licensed paramedic . Back then it was called non a non b hepatitis . But because it was a transmittable disease I lost my license to practice ( now days they can't take a license away like that) . Suffice it to say , that threw me into a severe bout of depression . I tried to kill myself and ended up in a 30 day coma , upon release from the hospital I tried again . It took 3 yrs before I found the help I needed to cope with the depression . Since then I have treated 4 times , and found that the depression from treatment wasn't nearly as bad as it was labeled . Especially since I have such a good support system going at home with my husband and children . Now days if your depression is under control with medication or therapy treatment is ok . Chronic illness in itself

can cause depression , but if the disease is treated successfully the depression resolves itself . If hepatitis c is left untreated it can cause a whole host of other diseases , like iron overload , porphyria cutanea tarda, kidney disease, cryoglobulinemia ,diabetes and so on . So if you feel like you can go through treatment then you should . Otherwise the only treatment you will be able to have is a transplant eventually and even then the new liver will become reinfected . Of course since you already have had suicide attempts you will need to make sure there is family support along with physician support in place just in case . It is hard for people to understand how bad we feel at times , just remind them that just because you don't look sick doesn't mean that you aren't New member Hi,I've been reading a lot of messages for a few weeks. I haven't had the guts to send a message. I've been diagnosed with chronic hep c since 1993..I know I was exposed in 1992. Back then few had much info and it took my Dr til 1997 to send me to a Hepatologist. I was only 26. She did a liver biopsy and was pleased to tell me it came out better than she had thought it would. Mild fibrosis...I can't say at that time I understood about the virus. She shed a lot

of light and talked to me about interferon, however, I have a long history (since young teenager) of severe depressive disorder, panic disorder, ADHD....many severe suicide attempts that made me a very risky candidate and since I had little knowledge about the virus I opted NOT to risk ever being that depressed. Well, since then I have done my large share of drinking, been on pretty harsh psych meds and then had my gallbladder out in 1992...the surgeon was nice and he took a biopsy while he was in there...he said "you have some scarring and DON'T drink! I never went back to a specialist..my primary care even said no doctor would do the treatment due to my mental history even though I had been stable on meds for many years and followed by a repected Psychiatrist. So yrs pasted and I started noticing I got the flu all the time...felt tired and I used to play tennis, ice skate..lots of energy!!! In the recent year

Ive lost weight I can't gain back, my muscles ache, and I came down with a severe left lung infectious pneumonia this past year, then another infection. My Dr was baffled by the pneumonia until she bothered to look at my chart and say "you have hep C?" I'm like "yeah"...she said my immune system was deficient..very comromised and I needed vaccines, recommended I see a specialist. I called a very well respected specialist (one my ex husband went to and did the treatment and is still virus free) I explained my pneumonia and my red palms for years....chest rash, weight loss and that it's been 15 yrs. They wanted to get me in right away but needed a call from my primary care....when I asked my primary care she was angry at me and then literally said she had no liver tests on me...I told her she has years of then and most recently on 5/16/07 ..I was terrified I thought she was losing her mind.....then she laughed at me and

said I've had it for so long whats the big rush!!!!!! I did call the physicians licensing board and make a complaint....but I still have to wait til 7/31/07 for my specialist.I also have a dull to more aching pain in my right side....my skin seems to be changing also. I am scared and I was hoping for some feedback, good or bad..honest feedback. I'm scared I won't be able to tolerate the treatment...actually I am most terrified at what my next biopsy is going to come out like.Also, it seems like even the closest people to me just think I am exgaggerating about how sick I feel. I don't complain a lot...but I am tired and fatigued, achey on and off. I feel alone.thanks for listening

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[Guest guest]

Hi Jax, I have received so many helpful and encouraging stories from members and I can't tell you how much it has helped my outlook in just one day. Im still scared but I feel I have more support know from ppl who really understand and it means soooo much. Jackie on <redjaxjm@...> wrote: Hi Im jax or Jackie, Im one of the co-owners and moderators here and I'd just like to say welcome honey to our group that is now YOUR group too!

I have known several ppl who have had serious depression and were able to successfully treat so I know its possible.. I knew one lady who signed a contract with her doc that IF she became so depressed that she even 'thought' about harming herself, she promised to call him day or night.. I spoke with her husband and assurred him that she had promised me too not to hurt herself.. and you know what? She treated and is clear now a year!!! After finishing tx,, a whole year,, she has stopped this virus and she did not have an increase in her depression either.. I didnt know I had hep c when going through a very ugly divorce so my doc put me on celexa and then when I got my diagnosis, he upped my dose BEFORE I started tx and quite honestly, I NEVER had once ounce of increased depression.. so I know you CAN do this honey,, its all a matter of YOUR CHOICE... We will be here for you and will help you in any way we can.. so DONT be

defeated before you even start! jaxbarron924 <barron924 > wrote: Hi,I've been reading a lot of messages for a few weeks. I haven't had the guts to send a message. I've been diagnosed with chronic hep c since 1993..I know I was exposed in 1992. Back then few had much info and it took my Dr til 1997 to send me to a Hepatologist. I was only 26. She did a liver biopsy and was pleased to tell me it came out better than she had thought it would. Mild fibrosis...I can't say at that time I understood about the virus. She shed a lot of light and talked to me about interferon, however, I have a long history (since young teenager) of severe depressive disorder, panic disorder, ADHD....many severe suicide attempts that made me a very risky candidate and since I had

little knowledge about the virus I opted NOT to risk ever being that depressed. Well, since then I have done my large share of drinking, been on pretty harsh psych meds and then had my gallbladder out in 1992...the surgeon was nice and he took a biopsy while he was in there...he said "you have some scarring and DON'T drink! I never went back to a specialist..my primary care even said no doctor would do the treatment due to my mental history even though I had been stable on meds for many years and followed by a repected Psychiatrist. So yrs pasted and I started noticing I got the flu all the time...felt tired and I used to play tennis, ice skate..lots of energy!!! In the recent year Ive lost weight I can't gain back, my muscles ache, and I came down with a severe left lung infectious pneumonia this past year, then another infection. My Dr was baffled by the pneumonia until she bothered to look at my chart and say

"you have hep C?" I'm like "yeah"...she said my immune system was deficient..very comromised and I needed vaccines, recommended I see a specialist. I called a very well respected specialist (one my ex husband went to and did the treatment and is still virus free) I explained my pneumonia and my red palms for years....chest rash, weight loss and that it's been 15 yrs. They wanted to get me in right away but needed a call from my primary care....when I asked my primary care she was angry at me and then literally said she had no liver tests on me...I told her she has years of then and most recently on 5/16/07 ..I was terrified I thought she was losing her mind.....then she laughed at me and said I've had it for so long whats the big rush!!!!!! I did call the physicians licensing board and make a complaint....but I still have to wait til 7/31/07 for my specialist.I also have a dull to more aching pain in my right

side....my skin seems to be changing also. I am scared and I was hoping for some feedback, good or bad..honest feedback. I'm scared I won't be able to tolerate the treatment...actually I am most terrified at what my next biopsy is going to come out like.Also, it seems like even the closest people to me just think I am exgaggerating about how sick I feel. I don't complain a lot...but I am tired and fatigued, achey on and off. I feel alone.thanks for listeningJackie

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[Guest guest]

Hi..."Red" Barron The Liver is a very tough organ!! My HEP-C (geno-type-1a) was diagnosed in 2006, but I may have

contacted the disease as far back as the late 70's or early 80's. I started feeling bad in the mid eighties, but attributed remnants of that from CGD as a child. CGD makes you more susceptible to getting infections, cold/flu type illnesses including pneumonia. I took my antibiotics and blew off most of the illnesses until I started getting vascular headaches in the mid-80's. These headaches made it impossible to drink. I worked 12+ hour days a lot and this type of pain could not be tolerated. I had to stop drinking totally. After trying all the medicine that did not work, I was given Darvocet. When it could not control the headaches I was given Vicoden. The medicine worked to a point. Like all narcotics it covers up pain. I covered up my pain with this drug for the next 20 years. I hurt on almost a daily basis, but still was a lead Mission analyst until I

changed jobs after my divorce in 1996. I went on to be a Manager for a Global Investment firm. Almost my entire 30 + year working career was over shadowed by pain, I covered up the pain with large doses of pain medicine, yet I still hurt and got sick. Last July 13th, I basically collapsed at home after work one day. I was home in bed for (4) days before I went to the doctor on day (5). I was in full jaundice and extremely anemic. I put this strain on my Liver for many years and even though my current diagnosis is Chronic Hepatitis with severe inflammation (grade4) & (Stage3) Fibrosis with portal to portal bridging and portal central bridging. Interface Hepatitis is severe; it’s amazing my Liver didn’t stop working all together. I stopped all drinking and pain medicine. I felt better

physically, but was a mess emotionally. I became severely depressed. I have tried everything out there and the only treatment known to put the virus to sleep is one that is debatable for someone with a history of CGD to take. If depression is the only thing stopping you then you may want to wait to your stable. The only anti-depressants that worked on me are ones with a higher level of Norepinephrine verses serotonin. I know exactly how you feel...Good luck barron924 <barron924@...> wrote: Hi Jax, I have received so many helpful and encouraging stories from members and I can't tell you how much it has helped my outlook in just one day. Im still scared but I feel I have more support know from ppl who really understand and it means soooo much. Jackie on <redjaxjm > wrote: Hi Im jax or Jackie, Im one of the co-owners and moderators here and I'd just like to say welcome honey to our group that is now YOUR group too! I have known several ppl who have had serious depression and were able to successfully treat so I know its possible.. I knew one lady who signed a contract with her doc that IF she became so depressed that she even 'thought' about harming herself, she promised to call him day or night.. I spoke with her husband and assurred him that she had promised me too not to hurt herself.. and you know what? She treated and is clear now a year!!! After finishing tx,, a whole year,, she has stopped this virus and she did not have an increase in her depression either.. I didnt know I had hep c when going through a very ugly divorce so my doc put me on celexa and then when I

got my diagnosis, he upped my dose BEFORE I started tx and quite honestly, I NEVER had once ounce of increased depression.. so I know you CAN do this honey,, its all a matter of YOUR CHOICE... We will be here for you and will help you in any way we can.. so DONT be defeated before you even start! jaxbarron924 <barron924 > wrote: Hi,I've been reading a lot of messages for a few weeks. I haven't had the guts to send a message. I've been diagnosed with chronic hep c since 1993..I know I was exposed in 1992. Back then few had much info and it took my Dr til 1997 to send me to a Hepatologist. I was only 26. She did a liver biopsy and was pleased to tell me it came out better than she had thought it would. Mild fibrosis...I can't say at that time I understood about

the virus. She shed a lot of light and talked to me about interferon, however, I have a long history (since young teenager) of severe depressive disorder, panic disorder, ADHD....many severe suicide attempts that made me a very risky candidate and since I had little knowledge about the virus I opted NOT to risk ever being that depressed. Well, since then I have done my large share of drinking, been on pretty harsh psych meds and then had my gallbladder out in 1992...the surgeon was nice and he took a biopsy while he was in there...he said "you have some scarring and DON'T drink! I never went back to a specialist..my primary care even said no doctor would do the treatment due to my mental history even though I had been stable on meds for many years and followed by a repected Psychiatrist. So yrs pasted and I started noticing I got the flu all the time...felt tired and I used to play tennis, ice skate..lots of

energy!!! In the recent year Ive lost weight I can't gain back, my muscles ache, and I came down with a severe left lung infectious pneumonia this past year, then another infection. My Dr was baffled by the pneumonia until she bothered to look at my chart and say "you have hep C?" I'm like "yeah"...she said my immune system was deficient..very comromised and I needed vaccines, recommended I see a specialist. I called a very well respected specialist (one my ex husband went to and did the treatment and is still virus free) I explained my pneumonia and my red palms for years....chest rash, weight loss and that it's been 15 yrs. They wanted to get me in right away but needed a call from my primary care....when I asked my primary care she was angry at me and then literally said she had no liver tests on me...I told her she has years of then and most recently on 5/16/07 ..I was terrified I thought she was losing her

mind.....then she laughed at me and said I've had it for so long whats the big rush!!!!!! I did call the physicians licensing board and make a complaint....but I still have to wait til 7/31/07 for my specialist.I also have a dull to more aching pain in my right side....my skin seems to be changing also. I am scared and I was hoping for some feedback, good or bad..honest feedback. I'm scared I won't be able to tolerate the treatment...actually I am most terrified at what my next biopsy is going to come out like.Also, it seems like even the closest people to me just think I am exgaggerating about how sick I feel. I don't complain a lot...but I am tired and fatigued, achey on and off. I feel alone.thanks for listeningJackie Building a website is a piece

of cake. Small Business gives you all the tools to get online.

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[Guest guest]

Awwww thank you ! If sharing my story can help someone then I am all for it !

New member

Hi,I've been reading a lot of messages for a few weeks. I haven't had the guts to send a message. I've been diagnosed with chronic hep c since 1993..I know I was exposed in 1992. Back then few had much info and it took my Dr til 1997 to send me to a Hepatologist. I was only 26. She did a liver biopsy and was pleased to tell me it came out better than she had thought it would. Mild fibrosis...I can't say at that time I understood about the virus. She shed a lot of light and talked to me about interferon, however, I have a long history (since young teenager) of severe depressive disorder, panic disorder, ADHD....many severe suicide attempts that made me a very risky candidate and since I had little knowledge about the virus I opted NOT to risk ever being that depressed. Well, since then I have done my large share of drinking, been on pretty harsh psych meds and then had my gallbladder out in 1992...the surgeon was nice and he took a biopsy while he was in there...he said "you have some scarring and DON'T drink! I never went back to a specialist..my primary care even said no doctor would do the treatment due to my mental history even though I had been stable on meds for many years and followed by a repected Psychiatrist. So yrs pasted and I started noticing I got the flu all the time...felt tired and I used to play tennis, ice skate..lots of energy!!! In the recent year Ive lost weight I can't gain back, my muscles ache, and I came down with a severe left lung infectious pneumonia this past year, then another infection. My Dr was baffled by the pneumonia until she bothered to look at my chart and say "you have hep C?" I'm like "yeah"...she said my immune system was deficient..very comromised and I needed vaccines, recommended I see a specialist. I called a very well respected specialist (one my ex husband went to and did the treatment and is still virus free) I explained my pneumonia and my red palms for years....chest rash, weight loss and that it's been 15 yrs. They wanted to get me in right away but needed a call from my primary care....when I asked my primary care she was angry at me and then literally said she had no liver tests on me...I told her she has years of then and most recently on 5/16/07 ..I was terrified I thought she was losing her mind.....then she laughed at me and said I've had it for so long whats the big rush!!!!!! I did call the physicians licensing board and make a complaint....but I still have to wait til 7/31/07 for my specialist.I also have a dull to more aching pain in my right side....my skin seems to be changing also. I am scared and I was hoping for some feedback, good or bad..honest feedback. I'm scared I won't be able to tolerate the treatment...actually I am most terrified at what my next biopsy is going to come out like.Also, it seems like even the closest people to me just think I am exgaggerating about how sick I feel. I don't complain a lot...but I am tired and fatigued, achey on and off. I feel alone.thanks for listening

Jackie

[Guest guest]

By the time the laws changed and I could work again my liscense would have expired and I would have had to recertify . Problem is I got so sick for so long that it was just easier to finally get married and start a family . Now I strictly do online patient support and medical research . And I am more than happy in my life right now due to that decision . My husband and children have been my rock !

New member

Hi,I've been reading a lot of messages for a few weeks. I haven't had the guts to send a message. I've been diagnosed with chronic hep c since 1993..I know I was exposed in 1992. Back then few had much info and it took my Dr til 1997 to send me to a Hepatologist. I was only 26. She did a liver biopsy and was pleased to tell me it came out better than she had thought it would. Mild fibrosis...I can't say at that time I understood about the virus. She shed a lot of light and talked to me about interferon, however, I have a long history (since young teenager) of severe depressive disorder, panic disorder, ADHD....many severe suicide attempts that made me a very risky candidate and since I had little knowledge about the virus I opted NOT to risk ever being that depressed. Well, since then I have done my large share of drinking, been on pretty harsh psych meds and then had my gallbladder out in 1992...the surgeon was nice and he took a biopsy while he was in there...he said "you have some scarring and DON'T drink! I never went back to a specialist..my primary care even said no doctor would do the treatment due to my mental history even though I had been stable on meds for many years and followed by a repected Psychiatrist. So yrs pasted and I started noticing I got the flu all the time...felt tired and I used to play tennis, ice skate..lots of energy!!! In the recent year Ive lost weight I can't gain back, my muscles ache, and I came down with a severe left lung infectious pneumonia this past year, then another infection. My Dr was baffled by the pneumonia until she bothered to look at my chart and say "you have hep C?" I'm like "yeah"...she said my immune system was deficient..very comromised and I needed vaccines, recommended I see a specialist. I called a very well respected specialist (one my ex husband went to and did the treatment and is still virus free) I explained my pneumonia and my red palms for years....chest rash, weight loss and that it's been 15 yrs. They wanted to get me in right away but needed a call from my primary care....when I asked my primary care she was angry at me and then literally said she had no liver tests on me...I told her she has years of then and most recently on 5/16/07 ..I was terrified I thought she was losing her mind.....then she laughed at me and said I've had it for so long whats the big rush!!!!!! I did call the physicians licensing board and make a complaint....but I still have to wait til 7/31/07 for my specialist.I also have a dull to more aching pain in my right side....my skin seems to be changing also. I am scared and I was hoping for some feedback, good or bad..honest feedback. I'm scared I won't be able to tolerate the treatment...actually I am most terrified at what my next biopsy is going to come out like.Also, it seems like even the closest people to me just think I am exgaggerating about how sick I feel. I don't complain a lot...but I am tired and fatigued, achey on and off. I feel alone.thanks for listening

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