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Thank you so much Trisha! I've been a group member for years...intermittently. I

tend to disappear for long periods of time due to my insane job. ;-) Stress

eating is my downfall. Thank God for exercise, it helps to minimize the damage

somewhat.

Welcome to the group! I look forward to reading more of your posts!

a

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Thank you so much Trisha! I've been a group member for years...intermittently. I

tend to disappear for long periods of time due to my insane job. ;-) Stress

eating is my downfall. Thank God for exercise, it helps to minimize the damage

somewhat.

Welcome to the group! I look forward to reading more of your posts!

a

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"Hello there, I'm new on here I just wanted to say hi. I've been Pos for about 2 years now. I was on Atripla for a while but now I'm taking a different approach on treating myself. I look forward to being a part of this group. Having a positive ATTITUDE is a step in the right dirrection. I hope to learn a lot from each and everyone of you and I hope you all can learn a little from me." I hope this doesn't mean that you have stopped your medications and laboratory work.JB

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What's that different approach? Please let us know ...From: Don <donjuan69uni@...>Subject: Hello! Date: Thursday, September 17, 2009, 12:31 PM

Hello there, I'm new on here I just wanted to say hi. I've been Pos for about 2 years now. I was on Atripla for a while but now I'm taking a different approach on treating myself. I look forward to being a part of this group. Having a positive ATTITUDE is a step in the right dirrection. I hope to learn a lot from each and everyone of you and I hope you all can learn a little from me.

You all take care and God Bless!

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I did stop my medication but not my lab work. My doctor is willing to work with me 100% instead of going to see him every 5-6 months he wants to see me every 2 months. Lab work is very important, it's the only way you can see what's going on with your body.

From: Barrowster <barrowster@...>Subject: Re:Hello! Date: Friday, September 18, 2009, 6:20 AM

"Hello there, I'm new on here I just wanted to say hi. I've been Pos for about 2 years now. I was on Atripla for a while but now I'm taking a different approach on treating myself. I look forward to being a part of this group. Having a positive ATTITUDE is a step in the right dirrection. I hope to learn a lot from each and everyone of you and I hope you all can learn a little from me."

I hope this doesn't mean that you have stopped your medications and laboratory work.

JB

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I did stop my medication but not my lab work. My doctor is willing to work with me 100% instead of going to see him every 5-6 months he wants to see me every 2 months. Lab work is very important, it's the only way you can see what's going on with your body.

From: Barrowster <barrowster@...>Subject: Re:Hello! Date: Friday, September 18, 2009, 6:20 AM

"Hello there, I'm new on here I just wanted to say hi. I've been Pos for about 2 years now. I was on Atripla for a while but now I'm taking a different approach on treating myself. I look forward to being a part of this group. Having a positive ATTITUDE is a step in the right dirrection. I hope to learn a lot from each and everyone of you and I hope you all can learn a little from me."

I hope this doesn't mean that you have stopped your medications and laboratory work.

JB

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While I'm not a fan of medication interruptions, in general, as long

as you're getting your labs and are followed by a doc, getting on a

cyber soap box seems less than helpful.

Good luck, and please keep all posted.

JB

On Sep 18, 2009, at 11:30 AM, Don wrote:

> I did stop my medication but not my lab work. My doctor is willing

> to work with me 100% instead of going to see him every 5-6 months he

> wants to see me every 2 months. Lab work is very important, it's

> the only way you can see what's going on with your body.

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While I'm not a fan of medication interruptions, in general, as long

as you're getting your labs and are followed by a doc, getting on a

cyber soap box seems less than helpful.

Good luck, and please keep all posted.

JB

On Sep 18, 2009, at 11:30 AM, Don wrote:

> I did stop my medication but not my lab work. My doctor is willing

> to work with me 100% instead of going to see him every 5-6 months he

> wants to see me every 2 months. Lab work is very important, it's

> the only way you can see what's going on with your body.

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Yes, my doctor is amazing! I have known people who have had problems with their doctors but this doctors is very caring and concerned about the well-being of his patients. Last time I had my lab work done I was undetecable but I only been on my new therapy for 2 weeks. Now I've been on it for 3 months and I'm eager to see my latest lab results (I had my blook drawn last week) I'm scheduled to go back next week. The therapy i'm doing consists of Hydrogen Peroxide and Coconut oil. You should reseach Hydrogen Peroxide Therapy and Coconut oil and how they can affect HIV.

> I did stop my medication but not my lab work. My doctor is willing to work with me 100% instead of going to see him every 5-6 months he wants to see me every 2 months. Lab work is very important, it's the only way you can see what's going on with your body.

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I did Ozone therapy infusion for 2 yrs in the early 90's in San Diego. Didn't notice any changes. But I AM 31 yrs poz now have always been undetect. in viral load. Who knows.... -MattSent from my Verizon Wireless BlackBerryFrom: Don Date: Fri, 18 Sep 2009 09:07:02 -0700 (PDT)Barrowster<barrowster@...>Subject: Re: Re:Hello! Yes, my doctor is amazing! I have known people who have had problems with their doctors but this doctors is very caring and concerned about the well-being of his patients. Last time I had my lab work done I was undetecable but I only been on my new therapy for 2 weeks. Now I've been on it for 3 months and I'm eager to see my latest lab results (I had my blook drawn last week) I'm scheduled to go back next week. The therapy i'm doing consists of Hydrogen Peroxide and Coconut oil. You should reseach Hydrogen Peroxide Therapy and Coconut oil and how they can affect HIV. > I did stop my medication but not my lab work. My doctor is willing to work with me 100% instead of going to see him every 5-6 months he wants to see me every 2 months. Lab work is very important, it's the only way you can see what's going on with your body.

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" Yes, my doctor is amazing! (...) The therapy i'm doing consists of Hydrogen

Peroxide and Coconut oil. "

I understand that people on this list have approached your posts with gentle

care and consideration.

Surely I admire that. But, this is an outright scam and fraudulous.

The only way to treat HIV is with antiretroviral medication. The rest is BS.

And if that doctor is realy a doctor (MD), someone should have his/her

licence revoked.

The recommended treatment by this 'doctor' is *not* the way to treat

hiv/aids.

But, maybe you are an so-called elite controler. And there you have it...

Regards,

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Welcome, ! :-)

In a message dated 9/27/2009 8:14:35 A.M. Central Standard Time,

lindalarbes@... writes:

Good Morning!

My name is . I am " the new kid on the block " , so to speak. I heard

about the group through a new friend I have been in contact with recently. I

am looking forward to " meeting " more folks with SMA and sharing experiences

and information.

I am 53 years old and was diagnosed at 16 months with, at that time

" Werdning-Hoffman disease " . Later in my adulthood, I had bloodwork done and

learned I really have SMA-Type 2. I use a power wheelchair and due to sleep

apnea, I use a Bi-PAP and oxygen during sleep. I worked for over 20 years as a

licensed social worker, but after a near-fatal bout with pneumonia decided

to quit full time employment. I now work part time from home as Staffing

Coordinator and Marketing Team Manager for a marketing firm.

I live in Cincinnati, OH with my husband Greg and our 12-year-old adopted

son, . I enjoy eating out, movies music, friends.

That's about it...for now.

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Hi ,

Glad you are joining in.  I am 46 y/o (until Friday), I have SMA II, am

married almost 18 years, use a motorized chair, have a trach button, and work

full-time as a case manager in a hospital (I am a SW too!  Got my MSW in '89). I

have been with my current employer for 19 years now.  I have to admit that each

day is a struggle but I keep going.  My dear husband is my life and inspiration.

Welcome and best wishes!

 Lori

I am Bippy on Twitter.

________________________________

From: Larbes <lindalarbes@...>

Sent: Sunday, September 27, 2009 9:13:00 AM

Subject: Hello!

 

Good Morning!

My name is . I am " the new kid on the block " , so to speak. I heard about

the group through a new friend I have been in contact with recently. I am

looking forward to " meeting " more folks with SMA and sharing experiences and

information.

I am 53 years old and was diagnosed at 16 months with, at that time

" Werdning-Hoffman disease " . Later in my adulthood, I had bloodwork done and

learned I really have SMA-Type 2. I use a power wheelchair and due to sleep

apnea, I use a Bi-PAP and oxygen during sleep. I worked for over 20 years as a

licensed social worker, but after a near-fatal bout with pneumonia decided to

quit full time employment. I now work part time from home as Staffing

Coordinator and Marketing Team Manager for a marketing firm.

I live in Cincinnati, OH with my husband Greg and our 12-year-old adopted son,

. I enjoy eating out, movies music, friends.

That's about it...for now.

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Welcome, !! See you on Saturday! ~a

________________________________

From: Larbes <lindalarbes@...>

Sent: Sunday, September 27, 2009 10:13:00 AM

Subject: Hello!

Good Morning!

My name is . I am " the new kid on the block " , so to speak. I heard about

the group through a new friend I have been in contact with recently. I am

looking forward to " meeting " more folks with SMA and sharing experiences and

information.

I am 53 years old and was diagnosed at 16 months with, at that time

" Werdning-Hoffman disease " . Later in my adulthood, I had bloodwork done and

learned I really have SMA-Type 2. I use a power wheelchair and due to sleep

apnea, I use a Bi-PAP and oxygen during sleep. I worked for over 20 years as a

licensed social worker, but after a near-fatal bout with pneumonia decided to

quit full time employment. I now work part time from home as Staffing

Coordinator and Marketing Team Manager for a marketing firm.

I live in Cincinnati, OH with my husband Greg and our 12-year-old adopted son,

. I enjoy eating out, movies music, friends.

That's about it...for now.

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Thanks, Lori!

________________________________

From: Lori G <lorig713@...>

Sent: Sunday, September 27, 2009 6:33:56 PM

Subject: Re: Hello!

 

Hi ,

Glad you are joining in.  I am 46 y/o (until Friday), I have SMA II, am

married almost 18 years, use a motorized chair, have a trach button, and work

full-time as a case manager in a hospital (I am a SW too!  Got my MSW in '89). I

have been with my current employer for 19 years now.  I have to admit that each

day is a struggle but I keep going.  My dear husband is my life and inspiration.

Welcome and best wishes!

 Lori

I am Bippy on Twitter.

____________ _________ _________ __

From: Larbes <lindalarbes>

@gro ups.com

Sent: Sunday, September 27, 2009 9:13:00 AM

Subject: Hello!

 

Good Morning!

My name is . I am " the new kid on the block " , so to speak. I heard about

the group through a new friend I have been in contact with recently. I am

looking forward to " meeting " more folks with SMA and sharing experiences and

information.

I am 53 years old and was diagnosed at 16 months with, at that time

" Werdning-Hoffman disease " . Later in my adulthood, I had bloodwork done and

learned I really have SMA-Type 2. I use a power wheelchair and due to sleep

apnea, I use a Bi-PAP and oxygen during sleep. I worked for over 20 years as a

licensed social worker, but after a near-fatal bout with pneumonia decided to

quit full time employment. I now work part time from home as Staffing

Coordinator and Marketing Team Manager for a marketing firm.

I live in Cincinnati, OH with my husband Greg and our 12-year-old adopted son,

. I enjoy eating out, movies music, friends.

That's about it...for now.

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Thanks!

________________________________

From: " Melijeff@... " <Melijeff@...>

Sent: Sunday, September 27, 2009 8:16:11 PM

Subject: Re: Hello!

 

Welcome, ! :-)

In a message dated 9/27/2009 8:14:35 A.M. Central Standard Time,

lindalarbes writes:

Good Morning!

My name is . I am " the new kid on the block " , so to speak. I heard

about the group through a new friend I have been in contact with recently. I

am looking forward to " meeting " more folks with SMA and sharing experiences

and information.

I am 53 years old and was diagnosed at 16 months with, at that time

" Werdning-Hoffman disease " . Later in my adulthood, I had bloodwork done and

learned I really have SMA-Type 2. I use a power wheelchair and due to sleep

apnea, I use a Bi-PAP and oxygen during sleep. I worked for over 20 years as a

licensed social worker, but after a near-fatal bout with pneumonia decided

to quit full time employment. I now work part time from home as Staffing

Coordinator and Marketing Team Manager for a marketing firm.

I live in Cincinnati, OH with my husband Greg and our 12-year-old adopted

son, . I enjoy eating out, movies music, friends.

That's about it...for now.

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You got it, Girlfriend!

________________________________

From: a B. <kristina45231@...>

Sent: Sunday, September 27, 2009 11:18:28 PM

Subject: Re: Hello!

 

Welcome, !! See you on Saturday! ~a

____________ _________ _________ __

From: Larbes <lindalarbes>

@gro ups.com

Sent: Sunday, September 27, 2009 10:13:00 AM

Subject: Hello!

Good Morning!

My name is . I am " the new kid on the block " , so to speak. I heard about

the group through a new friend I have been in contact with recently. I am

looking forward to " meeting " more folks with SMA and sharing experiences and

information.

I am 53 years old and was diagnosed at 16 months with, at that time

" Werdning-Hoffman disease " . Later in my adulthood, I had bloodwork done and

learned I really have SMA-Type 2. I use a power wheelchair and due to sleep

apnea, I use a Bi-PAP and oxygen during sleep. I worked for over 20 years as a

licensed social worker, but after a near-fatal bout with pneumonia decided to

quit full time employment. I now work part time from home as Staffing

Coordinator and Marketing Team Manager for a marketing firm.

I live in Cincinnati, OH with my husband Greg and our 12-year-old adopted son,

. I enjoy eating out, movies music, friends.

That's about it...for now.

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Hi Sharon. Whereabouts in Australia are you? I spent some time in Bay

NSW, loved it.

I know what you mean about sprouting ... sometimes on and sometimes off. Now

that I use the Easy Sprouters, I tend to always have sprouts of some type going.

I have six sprouters as well. I mix seed, right now have fenugreek, clover and

" nicks hot blend " going in one sprouter. One of my favorite mixes is alfalfa

and radish ... adds a nice zip to salads. I usually do broccoli and lentils

separately.

Lately I've been enjoying sprout sandwiches. I spread raw onion dip on a large

romaine leaf, a bit of chopped tomato and perhaps avocado, and a handful of

sprouts. Roll it up ... yum. The recipe for the onion dip is 2 cups raw

cashews, 1 cup pure water, 1 tsp sea salt. Blend. (I use a vitamix). When well

blended, put in bowl. Add 1 cup chopped onions. It is really good.

Anyway, happy sprouting!!

terry

>

> Hello I'm Sharon from Australia, and I like to sprout! I used to have an

automatic sprouter but it eventually packed it in. I thought that perhaps that

was the end of sprouting because I'd tried the old jar type of sprouting and it

was often hit and miss with rotten sprouts etc. And seemed like constant work.

But I missed sprouting and got a few Easy Sprouter containers. And thought well

it was ok. But I had gotten sick of sprouting and Hubby was too so I haven't

sprouted for ages. But about a week ago I got the urge and did some mung beans

and some lentils. I also found that I was enjoying manual sprouting. So I got

another couple of Easy Sprouters and now have 6. I like that I can just put the

container in the fridge with a lid on and it's all so easy. I am enjoying the

sprouting routine again. And enjoying crunchy salads with sprouts littered

through them.

>

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Sharon, Welcome to the group. Give fenugreek a try. They are really yummy and

do very well in the EasySprout. I had six, but my daughter talked me out of two

of them.

ew

Hello!

Hello I'm Sharon from Australia, and I like to sprout! I used to have an

automatic sprouter but it eventually packed it in. I thought that perhaps that

was the end of sprouting because I'd tried the old jar type of sprouting and it

was often hit and miss with rotten sprouts etc. And seemed like constant work.

But I missed sprouting and got a few Easy Sprouter containers. And thought well

it was ok. But I had gotten sick of sprouting and Hubby was too so I haven't

sprouted for ages. But about a week ago I got the urge and did some mung beans

and some lentils. I also found that I was enjoying manual sprouting. So I got

another couple of Easy Sprouters and now have 6. I like that I can just put the

container in the fridge with a lid on and it's all so easy. I am enjoying the

sprouting routine again. And enjoying crunchy salads with sprouts littered

through them.

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I'm up here in north Queensland. We are dubbed the Sunshines State,

but it's been a rare thing the past month.

Sharon

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Ben is nearly 16 and doing OK now - usually - but when he was younger

any little thing could ruin his whole life.  We once spent a whole day

doing what he wanted for his birthday and he was very happy - until we

went home 'the wrong way'.  It consisted of taking one street rather

than the next, nothing more.  We then heard how the whole day had been

horrible, nothing had been fun, etc, etc.  Sometimes you just have to

let them whinge, put them to bed, and hope it will be better in the

morning.  With Ben it usually was, but not always.  Growing up has

helped Ben cope, so maybe it will help with your son too.  Sometimes

you have to look past the complaints and think about whether the kid

really is having as bad a life as he thinks he is.

On 21/05/2010 10:49 AM, Laurel wrote:

 

My son is 9 years old, and was dx with mild Asperger's when he was

between K and 1st grade. He's grown by leaps and bounds because before

we moved to Washington he was in a wonderful public school in NJ that

gave him the social and speech services he needed.

With his family, he is very empathetic, can take our perspective most

times, looks us in the eye, etc, but not so with strangers.

When he was diagnosed and I did research, I realized that my sister,

father and grandfather all had undiagnosed Aspergers. Of course,

everyone chalked it up to them being shy, different, and odd duck, a

loner, etc.

I think he's turning into my dad, who is an old curmudgeon (love him

dearly, but still...) Jack is very negative, just like my dad. They

both always see the glass as half empty, and Jack complains that he has

a "bad life", nothing ever goes his way, he always focuses on negative

things that happen in his day, and never the positive. It's like they

never happen. He takes things very literally, and you can't joke with

him. It breaks my heart to see him so unhappy, even though he finally

made a nice friend and plays football with his pals at recess.

I guess this hurts doubly for me because I see him going through the

exact same thing as my sister did. She needed a formal engraved written

invitation to play with other kids, and so does my son. This is but one

example. It was so hard to see it the first time around, and now I get

to witness it all over again. Seems like nothing I say or do cheers him

up. He is seeing a psychologist to help him deal with the "death

spiral" of negativity he gets sucked into, but it doesn't seem to kick

in when it needs to. It's only been 2 months so we'll see.

It's hard to be the parent of a special needs child. Yes, I can give

the 5 minute warning before a transition, approach him differently than

I do my other son (age 11), but overall I struggle with feelings of

powerlessness over a neurological condition.

I look forward to hearing about you and your family!

Laurel

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Hello back at you.

> " I assume that the " scoby " is the floaty growth thing on the top of the tea,

why is it called this? " >

Correct, full marks.

It's a S.C.O.B.Y. =

Symbiotic

Culture/Colony

Of

Bacteria (and)

Yeasts.

< " Can I just pour new tea into the jar with the scoby to make another batch? " >

Basically, yes. But you'd be advised to give the jar a bit of a rinse at least

and restart each time

If you have got into brewing, and you leave your brew unmolested until it's

" Ready " (to your taste) you ought to have a new SCOBY form on the surface each

time.

< " Can I divide the culture somehow to get two batches going? " >

The new one may, or may not, be attached to its predecessor, but both are

equally viable so you could either leave them together or separate them and make

two brews. They are devilish tough little fellahs and you could have a hard time

tearing them but with MINIMUM contact and a good sharp Stainless steel knife you

can cut it into, virtually, as many pieces as you need for as many brews as you

need.

As regard benefits they are many and numerous, some folk say it might be the

converse of psychosomatic but who cares? Both internal and external uses people

even make face creams of old SCOBYs.

I dare say they'll all chip in with their experiences. (We're like that) ;¬))

HTH as they say .

(UK)

A.B.A.L.T.A.T.

" Any, LEGAL, topic which other groups would consider Off-Topic. "

http://uk./group/ABALTAT/

________________________________

From: Bonnie

Sent: Fri, 16 July, 2010 23:09:05

I am new to the group, and to kombucha. Actually, I only found it at the grocery

store less than a month ago. I loved how it made me feel and so I ordered a

culture online and have just finished my first batch. It is great! I am going to

have to get another jar because I am certain I will finish off this gallon

quicker than another one will be ready.

I have a couple of questions, if anyone would care to humor a newbie.

Finally, what health benefits have you experienced?

Thank you for your time, and I look forward to getting to know you!

Peas!

Bonnie

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

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In message <i1qla1+ilkgeGroups> you wrote:

> I am new to the group, and to kombucha.

Welcome, Bonnie! :-)

> I am going to have to get another jar because I am certain I will finish

> off this gallon quicker than another one will be ready.

Hehe, I take it, you are rather fond of the 'Juice of life', as the French

sometimes say! ;-)

> I assume that the " scoby " is the floaty growth thing on the top of the tea,

> why is it called this?

Very good question that, Bonny. 'S C O B Y' is actually the description of

what Kombucha culture is (the solid AND the liquid)

S ynbiotic

C ulture or C olony

O f

B acteria &

Y easts

It's bacteria and yeasts working together in the brew for their mutual

benefit, and, of couse ultimately, OURS!

'Scoby' as been increasingly used just to mean the solid culture (that the

bacteria build), but you need to remember that it's not just the solid, but

also the liquid that contains the microflora of bacteria and yeasts!

> Can I just pour new tea into the jar with the scoby to make another batch?

People do that if they are brewing with the continuous fermentation method,

which requires quite a large container with a spigot.

I myself do batch brewing), many batches with labels which remind me when

I did the brew and what teas I used. It also helps one not to let it brew too

long and get your brew more acidic than you want it.

> Can I divide the culture somehow to get two batches going?

Yes, certainly! I should wait, though, until a new culture has grown on

top of your brew (which will happen with each new batch).

Very important to 'plough' back a generous amount of ready brewed KT

into each new brew. This safeguards the culture against mold.

http://www.therpc.f9.co.uk/family/scobygrow/home.html

> Finally, what health benefits have you experienced?

Ahhh, the rate I am going, I expect to live to about 120 (the age of Moses!)

But you just never know.

It's difficult to generalise the benefits of Kombucha, as they differ from

person to person.

Fermented, probiotic food-stuffs are definitely a tremendous bonus in

one's diet and keep you younger ..... (just my opinion!)

> Peas!

and beans, of course! ;-)

Margret:-) UK

--

+------------------ Minstrel@... --------------------+

http://bavarianminstrel.wordpress.com

creation.com

'I have come to give you life, that you might have it to the full' (Jesus)

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If there is a reason there is an underlying reason they don't want to cast due

to the neuromuscular condition I do know a 2 year old who had the rods/ surgery

and he's doing fabulous. I am positive the people on this site can lead you to a

good place for a second opinion.

Tame

Sent from my iPhone

On Aug 28, 2010, at 2:16 AM, " crazerach " <rathomas@...> wrote:

I wanted to introduce myself to the group. I have a wonderful son Tommy who is 2

1/2 that was recently diagnosed with severe scoliosis. Now while I've known for

awhile(as moms do) that he had something going on with his spine, the doctors at

Shriners have finally shown interest in this problem. Recently we were told he

would need to have growth rods placed to correct the curvature in his spine

(which is about 45 degrees). I had already explored the Mehta method before this

appointment so I completely shut down and rejected what they were offering. At

this point I am seriously torn with how to procede and which treatment to

choose. My son has some other underlying neuromuscular problems and has endured

4 previous surgeries for other issues. I am scared to death at the severity of

the growth rod surgery and how it will affect him. From what the doctors are

telling me, at this point this surgery is medically necessary to prevent any

lung involvement due to

his curve. I am really interested In hearing all of your stories regarding the

casting your children have had, any surgeries they may have had to try and

correct their spine, and your honest opinions on why you chose casting rather

than any other treatment. We are scheduled to meet back with the spine

specialist in Sept. And I am really hoping I will make the right decision for my

precious little man. Thank you all in advance for your help as I know how

important any info you may be able to give me will be.

- Mommy to Tommy Lee 2 1/2 with scoliosis and arthrogryposis, and also

mommy to his big brother Logan who is 10 :)

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

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Hi , Welcome to CAST, you've found the right group for advice and encouragment!There is a great group of ladies here, who areso caring and helpful.I'm farly new to the group myself.My baby girl was diagnosed with progressive infantile scoliosis in May, she was 10 months old.Her curve was at 36 degs when we found out.After her MRI we learned she had a small ChiariMalformation, so we had to wait almost two monthsto see the Cheif neurosurgen at Childrens,when we finally got in to see him, he said it was very minorand only needed to be monitored.From my understanding, they have you do a MRIto rule out some things...congential scoliosis..chiari malformations..ect. now we are finally getting her in for her 1st caston Sep 2nd!We were so scared about things, not knowingwhat to do for our baby. But I found this groupand learned all I could about Mehta Casts.There was no question anymore about what we woulddo for her. We feel if it wasn't for these wonderful castsHer only option would be a brace until rod surgery.These casts have a hope of correcting children!Some of the kids in this group have started out with muchhigher curves and still got correction!I think your Tommy could definetly benifet fromMehta casts. Hope this has helped, I'm sure otherMoms, who have been on the group longer, willrespond as well :)Wishing you the best of luck, -mommy to Kaitlyn (13months) 1st castSep 2nd at Chicago Shriners and Isaac (4) Sent from my iPodOn Aug 28, 2010, at 3:16 AM, "crazerach" <rathomas@...> wrote:

I wanted to introduce myself to the group. I have a wonderful son Tommy who is 2 1/2 that was recently diagnosed with severe scoliosis. Now while I've known for awhile(as moms do) that he had something going on with his spine, the doctors at Shriners have finally shown interest in this problem. Recently we were told he would need to have growth rods placed to correct the curvature in his spine (which is about 45 degrees). I had already explored the Mehta method before this appointment so I completely shut down and rejected what they were offering. At this point I am seriously torn with how to procede and which treatment to choose. My son has some other underlying neuromuscular problems and has endured 4 previous surgeries for other issues. I am scared to death at the severity of the growth rod surgery and how it will affect him. From what the doctors are telling me, at this point this surgery is medically necessary to prevent any lung

involvement due to his curve. I am really interested In hearing all of your stories regarding the casting your children have had, any surgeries they may have had to try and correct their spine, and your honest opinions on why you chose casting rather than any other treatment. We are scheduled to meet back with the spine specialist in Sept. And I am really hoping I will make the right decision for my precious little man. Thank you all in advance for your help as I know how important any info you may be able to give me will be.

- Mommy to Tommy Lee 2 1/2 with scoliosis and arthrogryposis, and also mommy to his big brother Logan who is 10 :)

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