New Member

[Guest guest]

In a message dated 8/5/00 8:34:26 PM Pacific Daylight Time, uahollem@...

writes:

<< Hi ,

I am the mother of a 7 year old boy who has CVID. He was diagnosed at a

year of age but started on IVIG at 2 1/2 years after some serious illnesses.

They were hoping he would out-grow his condition. I wanted to join the list

so I could correspond with others who deal with the same problems as us.

Medeiros >>

Dear ,

Welcome to this group. I too am fairly new to this list, but my son has had

Selective Antibody Def. for three years. He has been receiving IVIG for

three years now. He is currently on Gammune N every three weeks. We travel

to Stanford Children's Hospital for his infusions. (Its about a four hour

drive) is 10.

I wish I had access to this group three years ago. In the short time on the

list, I have learned so much about PID. Also that symptoms has is

" normal " . e.g.. Fatigue, headaches, wearing down right before an IV.

It has been a wonderful source of info. The members are always willing to

help with questions. Well, welcome to the group.

le

10, Selective Antibody Def., Syringomyelia, Chronic Sinus

[Guest guest]

Dear Shari,

There are many excellent immunologists across the US. Some are well known

and have expertise in certain area's of the immune system and/or focus more

on certain individual PIDS. There are a list of physician's that work as

consulting immunologists for the IDF. If you contact the National IDF, they

will put you in touch with the consulting immunologist for Oklahoma. Good

luck to you~

Autumn (Mom to Mark Cd5-Cd19 PID and )

[Guest guest]

Shari, I would like to chime in on this one based on personal experience.

My son Matt had a probable diagnosis that took two and one-half years to be

finally confirmed. I fell into the same camp that you are presently in. I

did not want the IVIG for fear of the adverse reactions. However, after a

hospital stay with pneumonia and lab results which showed the lack of

antibody production, we decided on the IVIG treatments. I am glad that we

went that route now because Matt has been in perfect health and has not

suffered any permanent lung damage. By the way, we were also tested to

ensure that Matt did not have any IgA antibodies. That helped with the

fear of adverse reactions (i.e., made them less likely). I know it is tuff

not knowing exactly what to do; however, I would listen closely to the

doctors advice and consider the IVIG if you think it is warranted. Again I

maintain it was the right course for Matt even in the absence of a

confirmed diagnosis. Just my thoughts.

Quentin Seals

Matt's dad - XLA

[Guest guest]

Shari,

I live in Amarillo. We go to Dallas to Children's Hospital to see Dr.

Wasserman.

My son was diagnosed with CVID at age 2 1/2. It was recommended he

start

immediately on IVIG and he has been so much healthier. He was sick 5

days

of every 7. He was sick every holiday or family event.Almost every

video has

a sick baby or toddler from this time in his life. It was so hard on us

all and he was not getting to do many things for fear he would get sick

or because he was sick. Most of his infections were minor, but caused

him a lot

of problems for example he had a lot of vomiting with colds and they

lasted andlasted until he caught strep and then ... His weight and

energy were then affected. He is still slow to recover from

illnesses,but he

does not get sick very often. He has not had a serious reaction to IVIG.

Once, during the early months of the shortage, the pharmacy switched

brands and he got a headache, vomiting, and felt bad. He normally takes

Gamimune N (10 grams) and does fine with no pre-meds unless he has

a slight temp and then he takes Tylenol. He goes right out to play when

he

is done with his only complaint that his arm is a little stiff and he

needs to move

it around. He does not have a Port. It has been like a miracle to us to

have

him mostly well and we are thankful for IVIG and his insurance co. I

know this

is not everyone's experience, but we are thankful.

Jan

[Guest guest]

Thanks so much for the message. I have received several from people and all

have had great experiences with IVIG. My son's situation sounds similar to

yours. Is your son in kindergarten yet? I work 4 days a week usually and

my mother keeps my son. I look forward to the day when our activities

aren't focused around whether he is sick or will sick based on what we do.

Shari (mom of Braden - pending final diagnosis)

Shari Singleton

NCQA Project Manager

Manager, Legal & Regulatory Services

This electronic message transmission contains information from PacifiCare

Health Systems which may be confidential or privileged. The information is

intended to be for the use of the individual(s) or entity named above. If

you are not the intended recipient, be aware that any disclosure, copying,

distribution or use of the contents of this information is prohibited. If

you have received this electronic transmission in error, please notify me by

telephone () or by electronic mail (shari.singleton@...)

immediately. Thank you.

> RE: New Member

>

> Shari,

>

> I live in Amarillo. We go to Dallas to Children's Hospital to see Dr.

> Wasserman.

> My son was diagnosed with CVID at age 2 1/2. It was recommended he

> start

> immediately on IVIG and he has been so much healthier. He was sick 5

> days

> of every 7. He was sick every holiday or family event.Almost every

> video has

> a sick baby or toddler from this time in his life. It was so hard on us

>

> all and he was not getting to do many things for fear he would get sick

> or because he was sick. Most of his infections were minor, but caused

> him a lot

> of problems for example he had a lot of vomiting with colds and they

> lasted andlasted until he caught strep and then ... His weight and

> energy were then affected. He is still slow to recover from

> illnesses,but he

> does not get sick very often. He has not had a serious reaction to IVIG.

>

> Once, during the early months of the shortage, the pharmacy switched

> brands and he got a headache, vomiting, and felt bad. He normally takes

>

> Gamimune N (10 grams) and does fine with no pre-meds unless he has

> a slight temp and then he takes Tylenol. He goes right out to play when

> he

> is done with his only complaint that his arm is a little stiff and he

> needs to move

> it around. He does not have a Port. It has been like a miracle to us to

> have

> him mostly well and we are thankful for IVIG and his insurance co. I

> know this

> is not everyone's experience, but we are thankful.

> Jan

>

>

>

[Guest guest]

Shari,

Your experience sounds so much like ours--and many others here. I have

a daughter, age 3, who has been sick since age 4 months. We've been in

the hospital 5 times and had ear tubes and adenoids removed. Most of

her infections are for sinuses and she has very bad asthma. Her

temporary diagnosis is IgG 1,2, & 4 deficiencies.

As for immunologists, we have seen only one so far. Dr. Suzanne Beck

from Texas Tech in Lubbock. She maintains a private practice and works

out of the clinic also. She was really good, but at the point we saw

her, she didn't tell us anything new. She suggested a wait and see

attitude also.

We have seen so many bouts of sickness that I am wondering what it would

be like to live a normal life without meds, treatments, drs., etc. She

takes Singulair, Atarax, Nasonex everyday. We recently added Pulmicort

(neb steroid medicine) when she is having problems with asthma. During

asthma episodes we use albuterol (or Xoponex) and atrovent to control

them.

We are leaving next Tuesday for Denver, Co to visit National Jewish

Medical and Research Center for a full 8 day work-up of her immune

system. I've heard so many good things about this hospital, yet part of

me is skeptical. I hope we get a good work up and some answers, still I

have to worry what if we get the same thing we've gotten for years--wait

& see. I'm so tired of hearing " She'll grow out of this by age 5. " I

want something done now, yet I realize the importance of having a solid

diagnosis from which to proceed.

As a matter of fact, Autumn has been well for almost 3 weeks and Monday

I noticed signs of the asthma starting again. Yesterday, the dr. put us

on Suprax to knock out a sinus infection early so we can be reasonably

well for all the testing.

Hope this helps!

Ray, mother to Tabitha (age 5) and Autumn, age 3 (IgG def.,

asthma, chronic sinusitis, and allergies--unknown)--also 15 weeks

pregnant with #3!

[Guest guest]

, thank you for your response. I'm anxious to hear how your visit

goes next week. Please contact me again after you return. On your comment

about outgrowing the immune deficiency, our physician indicated that the

majority of children with this outgrow it by the time they're 18 months old.

Of the children who will outgrow it, it occurs by the time they're 4. Since

my son's IGG level dropped to 289 (with 407-1187 the range for his age) when

we got his results in August from a July blood test, the doc said it wasn't

likely he would outgrow it since he was turning 4 in September. Now that

he's 4, we'll go for more testing. Our appointment was scheduled for today

(after waiting 3 months) and it's been rescheduled for Friday. What's a

couple more days? It's not like we'll know anything for at least another

month, if not longer. The good news for us is that since he isn't in

daycare or preschool, he isn't sick much. However, based on experience, the

first time he is in an environment like preschool, he's sick all the time.

I wish you the best as you go to Denver. I pray you'll find the right

diagnosis to begin a treatment plan that improves your future. I'm hopeful

for the day with IVIG or some other new treatment because a long term fix,

rather than short term. As parents, even though we get so concerned when

our children are sick, think of how our children feel being sick all the

time.

Shari (mom of , and Braden - pending final diagnosis)

Shari Singleton

NCQA Project Manager

Manager, Legal & Regulatory Services

This electronic message transmission contains information from PacifiCare

Health Systems which may be confidential or privileged. The information is

intended to be for the use of the individual(s) or entity named above. If

you are not the intended recipient, be aware that any disclosure, copying,

distribution or use of the contents of this information is prohibited. If

you have received this electronic transmission in error, please notify me by

telephone () or by electronic mail (shari.singleton@...)

immediately. Thank you.

> Re: RE: New Member

>

> Shari,

> Your experience sounds so much like ours--and many others here. I have

> a daughter, age 3, who has been sick since age 4 months. We've been in

> the hospital 5 times and had ear tubes and adenoids removed. Most of

> her infections are for sinuses and she has very bad asthma. Her

> temporary diagnosis is IgG 1,2, & 4 deficiencies.

>

> As for immunologists, we have seen only one so far. Dr. Suzanne Beck

> from Texas Tech in Lubbock. She maintains a private practice and works

> out of the clinic also. She was really good, but at the point we saw

> her, she didn't tell us anything new. She suggested a wait and see

> attitude also.

>

> We have seen so many bouts of sickness that I am wondering what it would

> be like to live a normal life without meds, treatments, drs., etc. She

> takes Singulair, Atarax, Nasonex everyday. We recently added Pulmicort

> (neb steroid medicine) when she is having problems with asthma. During

> asthma episodes we use albuterol (or Xoponex) and atrovent to control

> them.

>

> We are leaving next Tuesday for Denver, Co to visit National Jewish

> Medical and Research Center for a full 8 day work-up of her immune

> system. I've heard so many good things about this hospital, yet part of

> me is skeptical. I hope we get a good work up and some answers, still I

> have to worry what if we get the same thing we've gotten for years--wait

> & see. I'm so tired of hearing " She'll grow out of this by age 5. " I

> want something done now, yet I realize the importance of having a solid

> diagnosis from which to proceed.

>

> As a matter of fact, Autumn has been well for almost 3 weeks and Monday

> I noticed signs of the asthma starting again. Yesterday, the dr. put us

> on Suprax to knock out a sinus infection early so we can be reasonably

> well for all the testing.

>

> Hope this helps!

>

> Ray, mother to Tabitha (age 5) and Autumn, age 3 (IgG def.,

> asthma, chronic sinusitis, and allergies--unknown)--also 15 weeks

> pregnant with #3!

>

>

>

>

>

> This forum is open to parents and caregivers of children diagnosed with a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

>

>

[Guest guest]

Helen Mom to Matt (14yo CVID)

Well, for those of you who have not heard, we here in Buffalo are digging

out. A Lot of snow. But then we do live on a lake. We are doing well and

everyone has survived. Thank god.

As for IVIG. Shari my son Matt has been sick his whole life. A variety of

problems and most notable his sinuses and reactive air disease. My doctors

tried to convince me that Matt might out grow it. They said give it till he

is 8 or 9 yo. So I did. He did not display blatent problems requiring many

hospitalizations. Any hospitalizations were over GI complaints. At 10 yo old

he was getting more and more sick and would not stay well off antibiotics -

every cold turned into an infection. What I did not know then and I can look

back on today is that this lifestyle not only affected his life at home but

his ability to do well in school. Why I did not equate the two I don not

know. Finally, we made our way to the immunologist in Buffalo who also is

able to jump through the lops to get the IVIG. This relationship started at a

good time seeing as Matts health was horrendous that year and we finally

started on IVIG. Now, I must tell you that Matts' response was somewhat

problematic. Not to alarm you and as you read on you will come to your own

conclussions. Matts first dose ended in a case of 'aseptic meningitis'. He

had a severe reaction of sorts. All of his following infussions resulted in

lesser episodes of 'meningitis'. Because of his severe reaction the first

time Matt is premedicated. We also decreased his dose to subclinical

recommended. Matt felt better but was still getting sick. Notable - his

grades started to go up up up. Matt was off last year and is back on this

year. His primary complaint off IVIG is fatigue. Major fatigue. This fall his

quality of life was nile. He had days of sleeping 16-19 hours a night.

Continuous infections even while on abx. He is at clinical dose now. He is

infussed very slowly and premedicated. Because Matt is 14 I think it is of

note that he begged his doctors this fall to put him back on IVIG. He

understands the risks, and knows that he has the potential for getting very

sick for a couple of days following IVIG. He also is able to understand how

much better he functions while of IVIG.

Long story I know. Sorry.

Matt is starting to fade- pre IVIG. Infussion is set for 12/1. Although there

are many risks I suppose it is a gamble we are willing to take as the product

does improve his and all of our quality of life. As you can see it took us a

while to get to the point of IVIG and even this year I was not sold on the

idea until his quality of life was so horrible.

Helen

[Guest guest]

Hi Gail

Nice to hear from you. My DH went to buy some CoQ10 for me today in

a chemists.The first thing the sales assistant wanted to know was,

was I on any medication.He said yes. She then asked did I have

muscle weakness etc.He then said I had been advised to take CoQ10

after research on the web. At this she laughed and said 'some people

will believe anything', DH , bless him said 'Yes we do', Still sold

him the tablets though!!

It was obvious that the staff are aware of why CoQ10 is being

bought. I find this sort of reaction so depressing.

On a lighter not I have to say i'm feeling much better after 5 days

off the Lipitor.

Regards

Jean

> > Hi

> > Have been reading the posts with interest after stumbling

accross

> > this group. I live in the UK and was prescribed Simvastatin in

> > February this year. My cholesterol was high but not that high

but

>

[Guest guest]

Hi Susie

well first off, welcome to hepcentral. The second

thing is to calm down, your mom may not have a lot of

damage so first off she has to have some other tests

first before she knows how bad it is or isnt!!!

I have had hep c for 26 years and Im still kickin, I

know many others who have had it 30 years or more with

NO damage, so try not to get too upset right off the

bat.

I host a chat room for hep at delphi,, at seekers,,

please feel free to come into chat anytime, Im only

there from 10-11pm central time, I live in calif and

so the time for me is 8-9pm..so you will have to

figure out what your time zone is..

seekers also has a website with much info on hep there

is a plethora of info out there so keep looking. Its

really great that your mom has you to look for info

for her and also so you can understand it yourself..

Did you get tested yet? Please dont use mom's razor,

toothbrush, nail clippers etc, anything that could be

a source of blood.. you dont have to worry about

drinking after her, or hugging her or sharing

clothes, etc,,

Please feel free to email me at redjaxjm@... and

Ill send you the url if you want to go to chat and

meet.

God Bless

jax

--- susie_loves_animals

wrote:

>

> Hello. My name is Susie and I am 27 years old. My

> mother and I just

> found out recently that she has Hep C. She says she

> has the worst

> form you can get. Her liver biopsy is in a few days.

>

>

> I am very scared because she is my only parent and

> is young herself

> (42).

>

> Right now I am overwhelmed with all the information

> available

> online. If someone could refer me to a simple to

> understand website

> I would greatly appreciate it.

>

> Thanks in advance,

>

> ~Susie~

>

>

>

>

=====

Jackie

[Guest guest]

Right on Jax but it is used to help determine the length of treatment and

prognosis for outcome.

The thing i didn't get is a doc wouldn't know how to treat such a high viral

load? Geeez doc, the same way you treat a low viral load.

DUH.................ric

[Guest guest]

After nearly a year off of mevacor, the muscle pain is pretty much gone, but I

can't get my arms behind my back (makes it hard to get a coat off and on, or

apron strings tied). Much better, however; at its worst, the pain was nearly

constant, and reaching for anything was excruciating.

Linden

" elizaga " wrote:

>I have only recently joined the group and should introduce myself. I am

>/Liz and live in Scotland in the UK. In April 2000 I was

>prescribed the statin called Lipobay (cerivastatin) and soon afterwards

>experienced severe muscle pain and spasm. Doctors dismissed any association

>with the statin. A year later Bayer withdrew this statin, due to muscle

>problems. Another doctor did think the statin was the cause of my muscle

>problems and advised me to stop it, which I did after 6 months. But muscle

>problems have prevailed.

>

>Does anyone else still have muscle problems long after stopping a statin

>drug?

>

>In a post today I read about a Dr Beatrice Golomb. Could someone give me

>the URL for her website as I gather she comments on side effects?

>

>I also developed a bone condition called avascular necrosis or osteonecrosis

>(AVN/ON) cause by interuption of blood supply to the bone causing bone

>death. If statins can damage muscle cells, I wonder if they might also

>damage bone cells....

>

>This is my first contact with anyone who has taken statins. When I first

>searched the internet in 2000 I found very little about statin side effects

>and no groups such as this. Only after Bayer withdrew cerivastatin did

>articles on side effects begin to appear.

>

>Thanking you in advance for any response.

>

>Liz ~ Scotland. UK

>

>

__________________________________________________________________

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[Guest guest]

This lack of arm movement is exactly the same as my hubby. It is better now thank God.....

Jill

RE: New member

After nearly a year off of mevacor, the muscle pain is pretty much gone, but I can't get my arms behind my back (makes it hard to get a coat off and on, or apron strings tied). Much better, however; at its worst, the pain was nearly constant, and reaching for anything was excruciating.Linden"elizaga" wrote:>I have only recently joined the group and should introduce myself. I am>/Liz and live in Scotland in the UK. In April 2000 I was>prescribed the statin called Lipobay (cerivastatin) and soon afterwards>experienced severe muscle pain and spasm. Doctors dismissed any association>with the statin. A year later Bayer withdrew this statin, due to muscle>problems. Another doctor did think the statin was the cause of my muscle>problems and advised me to stop it, which I did after 6 months. But muscle>problems have prevailed.>>Does anyone else still have muscle problems long after stopping a statin>drug?>>In a post today I read about a Dr Beatrice Golomb. Could someone give me>the URL for her website as I gather she comments on side effects?>>I also developed a bone condition called avascular necrosis or osteonecrosis>(AVN/ON) cause by interuption of blood supply to the bone causing bone>death. If statins can damage muscle cells, I wonder if they might also>damage bone cells....>>This is my first contact with anyone who has taken statins. When I first>searched the internet in 2000 I found very little about statin side effects>and no groups such as this. Only after Bayer withdrew cerivastatin did>articles on side effects begin to appear.>>Thanking you in advance for any response.>>Liz ~ Scotland. UK>>__________________________________________________________________Switch to Netscape Internet Service.As low as $9.95 a month -- Sign up today at http://isp.netscape.com/registerNetscape. Just the Net You Need.New! Netscape Toolbar for Internet ExplorerSearch from anywhere on the Web and block those annoying pop-ups.Download now at http://channels.netscape.com/ns/search/install.jsp

[Guest guest]

Nice to meet you -- you're in good company here!

meatburger2007 wrote:

Hi Everyone.

I wanted to introduce myself. I am a new member and have listened to

the first seven of 's podcasts this past week.

I am married, a mother of three children and over 40. I used to be

one of those people that could eat whatever I wanted. Now, I gain

weight very easily and weigh as much as I did when I had my first

baby.

One of the podcasts talked about eating only when your hungry. I

used to be like that. Somehow, over time I have become an emotional

eater. I especially like to eat when I feel stressed at work or when

I first get home from work – I tend to binge.

I used to live in Boulder, Co and was around people that lived fit

and healthy lives. For the past 10 years I now live in a place where

many people tend to be overweight and exercise is not a priority. It

is a very easy trap to fall into with a hectic schedule with the

family and working full-time.

I really want to change my life for the better - Exercise regularly

and eat when I am hungry and make healthy choices.

Looking for support on my new journey.

-MB

Kim

Secretary, Holy Terrors S.T.A.R.S.

http://www.freewebs.com/holyterrorstars

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

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

[Guest guest]

Hey !

Congratulations on your new initiative. It is like has said

that every attemp we make to losing weight will increase the chances

of succeeding. So far this is true for me! And I know it will be

Really True for you!

Whenever you think you might fall, come to this group for aid! We

will help you get up and keep you going on your journey as we all

help each other. Here, no one will lose interest in this group and

there are a total of three IOWL groups out here (besides the Yahoo

Group)

Good Luck! Stay positive and be present!

- Jess

http://groups.myspace.com/insideoutweightloss

http://www.facebook.com/group.php?gid=13915862836 & ref=nf

>

> I am a new member, I joined yesterday. The reason I joined is the

> group that I am in (there are 5 of us women) are not very

> communicative. We started a blog and I find myself being the only

one

> that writes. We are a weight loss group that I started with friends

I

> know called " Loserfriends " . We started out with 4 people on January

> 1st but now we have 5, the 5th joined the beginning of the 2nd

> quarter. We have quarterly competitions and things seemed to be

going

> well but they seem to be losing interest. So I thought I would join

> this group since I have been listening to the podcasts every day

for

> the past few weeks.

> I have to say that it makes the most sense of anything else I have

> ever heard.

> I was reading a lot of the posts and have responded to some, but I

> have already gotten a great deal from reading what other people

have

> to say! I learned today that I don't have an eating disorder. I was

> thinking about another new person that described himself or herself

> as an overeater. When I was reflecting on that I realized that my

> weight gain was from circumstances that I have been in the past few

> years. I was never fat as a child or young adult until I had

> children. When I was at home raising 4 children I still wasn't too

> bad, I was up to 160 lbs which was the heaviest I had ever been

> (except for pregnancy of course) but when I really gained weight is

> when I quit smoking. I put on a whopping 43 lbs and it seemed like

> it happened over night. So I don't have an eating disorder, I have

a

> stress disorder that I compensate with food. I find that the second

I

> feel the littlest stress coming on, I run for the popcorn or candy

> machine (this stress is normally at work). I also have recently (11

> months ago) acquired a new husband who is an overeater.

> As a result of my loserfriend group, I now weight 194.5 down from

208

> on January 1st. My dream is to weigh 135. I use to think that

wasn't

> possible but like says, dream big.

> I found myself slacking off and losing will power in March and that

> is what lead me to the podcast and here. I was trying to take care

of

> my body but I couldn't seem to keep going. Then it hit me, one of

> those ahhh moments. I needed to get my mind and soul in shape too

and

> that is how I found IOWL. I am so grateful for the podcast and for

> . And I am greatful for all of the members of this group that

> are helping each other out. I am always looking to share my

thoughts

> (obviously) and I always love hearing others thoughts. So send

> thoughts my way…

>

>

[Guest guest]

Welcome to the group and glad to hear from you!

Enjoy the podcast and post any messages, successes, questions, comments, or

troubles to the group, and we will be glad to help you along your journey.

Randy

[Guest guest]

Welcome to the group! Many success stories are posted on the website www.infantilescoliosis.org. I'm sure many of the parents will be willing to share. Great job doing your research! Our daughter has congenital, and thus is a bit different than most of the kids represented here. So glad you found this group.

shellie grant (Moriah's Mom)

Subject: New memberTo: infantile_scoliosis Date: Thursday, July 30, 2009, 2:10 PM

Hello All,We are a new member to Infantile Scoliosis group and very muchappreciate any help you can provide us to better understand varioustreatment 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. Theinitial MRI and x-rays showed that the bone structure and spine werenormal and free from any defect. So weak muscles were flagged as themain contributor to his scoliosis. Because of this, the proposedinitial treatment was to observe combined with physical therapy andstretch exercises. This continued for another few months with hisscoliosis getting worse at each subsequent visit. The next treatmentproposed was to use a Boston Brace that he wears 20-24 hrs a day. Thefollow-up checkup after that showed that the brace had some success inslowing down his

scoliosis progression but had minimal effect incorrecting it. The next suggestion was to augment the Boston Bracewith a ton Brace during night. We have been using thecombination of the two braces to date for about six months now.Prognosis, No Change. I guess that in itself is a good news but allthat has been able to accomplish is to slow down the scoliosis.What is disappointing is that his most recent x-ray is showing thatfew of his vertebrate bones are growing unevenly due to unevenpressure caused by his scoliosis. So, now we have taken a stepbackward.Right from the beginning, me and my wife have been very clear with thedoctor that we are interested in a very aggressive treatment as earlyas possible because we did not want to lose any time and anything goodthat we might have had on our side. It also seemed logical thattreating the scoliosis early should be relatively easier with

betterpossible outcome. Instead, the approach of the doctor has been veryconservative and taking action only when things were clearly going thewrong direction. Also, the lack of sharing timely and correctinformation on his diagnosis has been frustrating.Bottom line, I want to avoid the need for a spinal surgery, fusion andalike. And I do not want to lose any more precious time and miss anopportunity.So I have come across the CAST group during my Internet research. Ihave already read the treatment paper published by Dr Mehta (Growth asa corrective force in the early treatment of progressive infantilescoliosis). It looks very promising and may be even that magicaltreatment that we are looking for. However, before we dive into this Iappreciate it if the CAST members can share their experiences with Dr.Mehta's method. Success stories are encouraging, but I am alsointerested in learning

about what did not work!Thank you for sharing your thoughts with us.Sam

[Guest guest]

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 old9 months of casting in SLC; Currently on month 18 of bracingAnd Mariella 6 months old currently waiting and watching at 11*

To: infantile_scoliosis From: sbehta@...Date: Thu, 30 Jul 2009 12:10:24 -0700Subject: New member

Hello All,We are a new member to Infantile Scoliosis group and very muchappreciate any help you can provide us to better understand varioustreatment 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. Theinitial MRI and x-rays showed that the bone structure and spine werenormal and free from any defect. So weak muscles were flagged as themain contributor to his scoliosis. Because of this, the proposedinitial treatment was to observe combined with physical therapy andstretch exercises. This continued for another few months with hisscoliosis getting worse at each subsequent visit. The next treatmentproposed was to use a Boston Brace that he wears 20-24 hrs a day. Thefollow-up checkup after that showed that the brace had some success inslowing down his scoliosis progression but had minimal effect incorrecting it. The next suggestion was to augment the Boston Bracewith a ton Brace during night. We have been using thecombination of the two braces to date for about six months now.Prognosis, No Change. I guess that in itself is a good news but allthat has been able to accomplish is to slow down the scoliosis.What is disappointing is that his most recent x-ray is showing thatfew of his vertebrate bones are growing unevenly due to unevenpressure caused by his scoliosis. So, now we have taken a stepbackward.Right from the beginning, me and my wife have been very clear with thedoctor that we are interested in a very aggressive treatment as earlyas possible because we did not want to lose any time and anything goodthat we might have had on our side. It also seemed logical thattreating the scoliosis early should be relatively easier with betterpossible outcome. Instead, the approach of the doctor has been veryconservative and taking action only when things were clearly going thewrong direction. Also, the lack of sharing timely and correctinformation on his diagnosis has been frustrating.Bottom line, I want to avoid the need for a spinal surgery, fusion andalike. And I do not want to lose any more precious time and miss anopportunity.So I have come across the CAST group during my Internet research. Ihave already read the treatment paper published by Dr Mehta (Growth asa corrective force in the early treatment of progressive infantilescoliosis). It looks very promising and may be even that magicaltreatment that we are looking for. However, before we dive into this Iappreciate it if the CAST members can share their experiences with Dr.Mehta's method. Success stories are encouraging, but I am alsointerested 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.

[Guest guest]

Hi Sam and welcome to CAST! So happy you guys found us. You are on the ball and know what you are looking for. And done some research.That is GREAT and will only get things moving that much faster.My son, , was treated by a doctor that was NOT Mehta trained at the time of his treatment. He has now been trained. Anyway I will say I do feel would be completely done with everything had we been going to a doctor that knew her techniques and was casting him on a child size appropriate casting frame. was in a series of 6 casts over 14 months.Casts 1-4 brought 's curve down to 19-21 from 35 degrees. These casts basically held him. It was at that point his doctor was ready to move to a brace.....the casts were not helping him anymore. His last 2 casts did bring him down to 15 degrees before

he started in a brace. So I can't say casting did not work for because he is only in a brace at night now. He has totally avoided surgery, but we have no idea when he will be safe to just go without a brace. If I had to do it all over again I would have got 2nd and 3rd opinions and for sure would have gone to a Mehta trained doc.. And one that had a child-size appropriate casting frame.Please feel free to ask any questions and you can read 's story in the link at the end of my signature.TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.html--- Subject: New memberTo: infantile_scoliosis Date: Thursday, July 30, 2009, 2:10 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]

Dave,

Welcome to the group! I know that Rochester offers the Early Treatment casting. Check them out. I think the doctor info is listed in a file on the group. Some of the other parents can give you some info on them as well. Glad you are catching this so early.

shellie grant (Moriah's Mom, congenital scoliosis, Tetrology of Fallot)

Subject: New MemberTo: infantile_scoliosis Date: Wednesday, August 12, 2009, 10:20 AM

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

[Guest guest]

Hi Dave,

I do know of one doctor you mentioned and have heard only VERY good things about

him. I know the parents of some of his patients and have even exchanged a few

e-mails with him myself.

He seems to be committed specifically to fighting infantile scoliosis (he even

wrote something called " Early Onset Scoliosis - the Unsolved Challenge " ).

If you wish to e-mail me, please feel free to do so at mariaf305@....

I believe that it is against the Netiquette rules here give opinions about

doctors by name, even if the feedback is positive, so that is why I am not doing

so (just don't want you to think I'm being mysterious!).

Best of luck to you!

>

> 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 was

> hoping 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

>

[Guest guest]

Hi welcome.

I use the old Bullworker 2 exercises from the manual in the files section, I

downloaded it to my PC and started to use it. At that time I only had a

Bullworker 2 so it seemed the right thing to do.

Since then I've expanded my Bullworker collection - the Mark III (deluxe - the

brown-handled one), a Mark IV (Indian made also known as " power worker " probably

identical to the " Bully Extreme " ), a second-hand X-5, and a lady bullworker.

I did use the X-5 exercise chart or booklet for a while, but drifted back to

the Bullworker 2 manual with just a few additions of my own to focus more on my

mid-section - I think maybe it's because I like the pictures more.

Finding a routine that suits you, that you will persist with is the key, a

routine you can enjoy long term, will do the most good.

Regards,

Graham

>

> Hi,

>

> More than 10 years ago I used to use the Bullworker regularly for workouts but

somehow got out of the habit. I'm now starting to use the Bully again but can't

remember much about my original training program. I have what I believe is the

most current wall chart, and also a pdf of an old manual (red and blue cover)

from back in the 70's or 80's. The exercises, warm ups and recommendation in

these two documents don't seem to match so initially wasn't sure which regime to

follow. I have now decided that as the wall chart is the most recent publication

that's the way I'll go for the time being. I would be interested to hear which

of the guides other people are using and why that is their preference.

>

> Regards

>

> Chris

>

[Guest guest]

Hi Graham,

Thanks for the response. I think I'll stick with the chart for the time being

but one big difference i have noticed is that in the manual there is a warm up

exercise which you are suppoed to do until your pulse rate gets up to 120. On

the chart it simply gives a series of warm ups with a specitied number of reps

and no mention of PR. Be interested to know if people think this specified pulse

rate is important.

Chris

[Guest guest]

Hi Chris!

> Be interested to know if

> people think this specified pulse rate is important.

Not particularly, you want to warm up to prepare your body for the

workout that's coming and to prevent injury. I generally warm up with a

stretching routine and running on the spot for a few minutes.

ATB

--

Smoke me a kipper I'll be back for breakfast.

[Guest guest]

>

> just wanted to say hi. i have lifted wts off and on for yrs, and frankly never

took a bullworker to seriously. have recently got interested in them again. i

dont currently own a model, but will get one soon. i have seen online the

bullworker classic, the smaller sized one, and the bully extreme. i just read on

this page they had a new classic coming out. that is one im interested in. i

have seen older model. how is the new one different.? i'm sorry i dont much

about them, but am interested to learn. i play tennis, do some martial arts,

and have wandered if bullworker would be A useful tool to have. thanks

> kevin

>

Hi look mate you have nothing to loose by using a Bullworker But a lot to

gain they are a great training tool they work look be through some of the

storys in these pages and you understand more about them buy your self a

Bullworker they don't cost a. Great deal and some people have had ones that

have lasted years of service my included I am sure you will see results cheers

!