New to the group

January 24, 2011

Welcome, ! I'm 27 years old, SMA type II, married for 2.5 years, living

and working in the Bay Area of California. You will certainly find a lot of

support in this group!

I've found everyone with SMA has a different progression rate. I stopped walking

at the age of 14 after my scoliosis surgery. My strength has been fairly stable

ever since, except for a few brief period of rapid decline. I'm right now

experiencing one of those periods.

Many women here have had their own children, and later this year my husband and

I will begin trying to conceive. Everyone is different and I encourage you to

have this conversation with your doctors. Whether or not your children will be

affected by SMA depends on if your future husband is a carrier. If he does carry

the gene, there's a 50% chance your child will have SMA. If he does not carry

the gene, your children will not be affected but all of them will be carriers

(to potentially pass it on to their children).

As for the relationship advice, I would give the same answer when anyone else

asks about love: be open, honest and communicate.

<3Kendra

>

> Hello Everyone,

>

> I am new to this group and I'm hoping to learn from other in this group about

ideas, adaptations and obstacles I could face in my future. My name is , I

am from the Mt. Pleasant area (during the school year) and from the Flint area

during the summer in Michigan. I am 26 years old and was diagnosed with SMA type

3 when I was 2 1/2 years old. I am currently a senior at Central Michigan

University and hoping to graduate this coming December. I have my own apartment

here in Mt. Pleasant with two wonderful roommates. I am also engaged to a

wonderful guy Jon and have set the wedding date for March 17, 2012 (if

graduating and school stuff work out as planned). I am able to still walk but I

use an motorized wheelchair to get around campus and a manual wheelchair when I

am going long distances like the mall.

> My family consist of a younger biological sister and younger biological

brother, with three step-brothers (one passed away two years ago this March of

Duchene MD) and two step- sisters. My biological siblings are both diagnosed

with SMA Type 3. My brother hasn't walked since he was 3 and my sister has

become considerably weaker, using her chair more in the last three years. My

Fiance also has a daughter from a pervious marriage (Madison, 4 in April).

> Some concerns that have been on my mind recently:

> 1. Walking, how long will I be able to walk? Is there an age where I'll stop

walking? I am not sure there is, doctors told my mom that me and my sister

wouldn't walk past the age of 10 but it's 16 years later and I am still walking.

> 2. Children, Am I able to have children of my own? Will they end up with SMA

also? How would being pregnant affect my disease and health? If I could have

kids would be a natural birth or c-section? And if I did have kids how to would

I take care of them (i.e. Picking them up, getting them out of a crib, stuff

like that)? the list of concerns and questions could go on forever with this

topic, it kind of makes me sad to think that I could be told no you can't or

shouldn't have kids.

> 3. Relationships, How do I help my fiance help me? How do I help him to

understand things I am going through?

> So that's all I can think of right at this point, I'm sure there is more or

even topics I haven't even thought of already discussed. Thanks for anyone who

comments!

>

> Sincerely,

>

March 12, 2011

Hi ,

I promise casting is not so bad and becomes a way of life so quickly. I don't

know what type of carseat you have now but at the very least the straps will

need to be lengthened. Clothes, at least shirts will go up a size or too and

pants w/an elastic waist works best. My son was casted at 13 mos and did have to

relearn to roll over and crawl but he did so within a matter of 2 weeks. He also

learned to walk, run, jump, ect in cast! It just becomes like a second skin to

them. It is way harder on us than on them. Promise!

Welcome to this awesome group! Ask any and all questions...that's what we are

here for!

mom to Isaiah

Borruso <melissa.borruso@...> wrote:

>Hello, my name is and I am new to the group. I have to be very honest

in

>saying that I did not feel like I needed any support (like I am Superwoman!) I

>really try to hold things together but not a day goes by that I dont cry for my

>son. I am a married mother of two beautiful boys ages 4 and 19 mos. I want to

>share my journey. Matteo (the 19 month old) was born with a congenital hand

>deformity known as hypoplastic or bilateral thumbs.On the second day of his

life

>I had a doctor come into my room to tell me that when the hands and the heart

>are developed at the same time in utero and we needed to test his heart. I felt

>as if the wind was just sucked out of me. Thankfully his heart tests came back

>and everything is ok as far as the heart is concerned. My husband and I were

>very grateful. A plastic surgeon came in and said he was missing some muscle

and

>tendon and suggested we see a hand surgeon. My husband and I along with his

>sister left no rock unturned. We were constantly on the computer researching

>about his conditions and looking for the best doctors. We first traveled to

>Philadelphia to the Shriner's Hospital there when he was 6 wks old.Â It was

there

>that my life was never going to be the same. The doctors told me that becuase

he

>was so young and had a lot of growing to do before anything was actually done

>but he was most likely going to have a procedure done known as pollicization (a

>far cry from what I was first told). This is where the index finger will get

>moved over to take the place of the thumb. I just remember falling to the floor

>with my baby in my arms crying. My husband promised me that we will see other

>doctors and assured me everything was going to be fine. Well we seen two more

>doctors, one in land and one in Boston and they both gave the same

>diagnosis. I became very depressed. How could this happen to my baby? Why him?

I

>hated when people told me that " it could be alot worse " . I told them that this

>IS the worse for me! As time went on Matteo was getting PT and OT and was

>developing like any other baby. He is so cute and very intelligent and makes us

>laugh everyday. I was finally coming to terms that this is what needs to be

done

>for him to have a normal functioning hand when last month we found out that he

>has scoliosis. I felt as if someone just punched me in the stomach. My husband

>mentioned a few times that he thought Matteo's spine was a little curved. When

>bringing it to ourÂ pediatricians attention, she said it was fine, it probably

>looked that way beacuse of the torticolis (yes, he was born with torticolis, I

>forgot to mention that). Beacuse she was the doctor, we relied on her opinion.

>Thru time his torticolis seemed to be getting better but I thought it should be

>alot better by now. His PT gave me a name of a woman who works on torticolis

and

>does cranial head massages. She was the one that suggested we have his spine

>looked at. My husband felt so guilty, all he says is that he knew there was

>something wrong. We went to Strong Memorial Hospital in Rochester where we saw

>Dr Rubery. He confirmed that it was scoliosis, his spine was 33 degrees and he

>would have to be casted. You could imagine what I felt. My heart just breaks

>knowing he wont be able to take a bath or swim this summer. His CAT scan and

MRI

>showed no more abnormalities (thank God!). Matteo will be getting casted this

>Thur (March 17). I'm grateful for the doctor and for how he is quickly moving

>things along for Matteo. I have alot of questions about casting so if any of

you

>could help, it would be grately appreciated. Do I have to get a bigger car

seat?

>What about clothes? Do they have to be bigger to fit over the cast? How do I

>handle him wanting to take a bath? He just loves bathtime with his brother! How

>soon will he begin his normal activities? I have more but he woke up from his

>nap! Thank you for letting me vent and I hope to hear back from some of you.

>

March 13, 2011

,

Welcome to the group. My son Cole, also is seen in Rochester by Dr. S. We wash

casted for 10 months starting at 47 degrees laying down at 15 months. We have

now been in a brace for 10 months. I can not say enough good things about the

hospital there. We were fine in the normal car seat for awhile, then we

switched to a booster seat because of his height with the cast on. He went up

about a size in clothing. Pants are tough to keep up so we used suspenders. In

terms of bath time, I would honestly switch both kids to sponge baths so I

didn't have to deal with it (I know that is bad) We filled the sink and let him

splash his feet in it. We got a smock so he could splash and do dishes with us.

He loves that. We also got a big inflatable pool and got 20 bags of balls and

made a HUGE ball pit in the play room. He LOVED it! COle was 75% normal within

hours of getting cast 1 on. And within 2 weeks 100%. Learning to bend over and

get up off the ground again took some practice. Also getting used to sitting

was weird at first because the cast rests on their legs, though it doesn't hurt.

Honestly life in the cast has not been bad for us, the traveling to doctors was

tiring but day to day living was very normal.

Please feel free to call me 518-686-1452 if you want to talk, vent or ask

questions.

Jenn

Mommy to Cole, 3 years old 47 degrees down to 0 out of brace laying down (18

standing)

>

> Hello, my name is and I am new to the group. I have to be very honest

in

> saying that I did not feel like I needed any support (like I am Superwoman!) I

> really try to hold things together but not a day goes by that I dont cry for

my

> son. I am a married mother of two beautiful boys ages 4 and 19 mos. I want to

> share my journey. Matteo (the 19 month old) was born with a congenital hand

> deformity known as hypoplastic or bilateral thumbs.On the second day of his

life

> I had a doctor come into my room to tell me that when the hands and the heart

> are developed at the same time in utero and we needed to test his heart. I

felt

> as if the wind was just sucked out of me. Thankfully his heart tests came back

> and everything is ok as far as the heart is concerned. My husband and I were

> very grateful. A plastic surgeon came in and said he was missing some muscle

and

> tendon and suggested we see a hand surgeon. My husband and I along with his

> sister left no rock unturned. We were constantly on the computer researching

> about his conditions and looking for the best doctors. We first traveled to

> Philadelphia to the Shriner's Hospital there when he was 6 wks old. It was

there

> that my life was never going to be the same. The doctors told me that becuase

he

> was so young and had a lot of growing to do before anything was actually done

> but he was most likely going to have a procedure done known as pollicization

(a

> far cry from what I was first told). This is where the index finger will get

> moved over to take the place of the thumb. I just remember falling to the

floor

> with my baby in my arms crying. My husband promised me that we will see other

> doctors and assured me everything was going to be fine. Well we seen two more

> doctors, one in land and one in Boston and they both gave the same

> diagnosis. I became very depressed. How could this happen to my baby? Why him?

I

> hated when people told me that " it could be alot worse " . I told them that this

> IS the worse for me! As time went on Matteo was getting PT and OT and was

> developing like any other baby. He is so cute and very intelligent and makes

us

> laugh everyday. I was finally coming to terms that this is what needs to be

done

> for him to have a normal functioning hand when last month we found out that he

> has scoliosis. I felt as if someone just punched me in the stomach. My husband

> mentioned a few times that he thought Matteo's spine was a little curved. When

> bringing it to our pediatricians attention, she said it was fine, it probably

> looked that way beacuse of the torticolis (yes, he was born with torticolis, I

> forgot to mention that). Beacuse she was the doctor, we relied on her opinion.

> Thru time his torticolis seemed to be getting better but I thought it should

be

> alot better by now. His PT gave me a name of a woman who works on torticolis

and

> does cranial head massages. She was the one that suggested we have his spine

> looked at. My husband felt so guilty, all he says is that he knew there was

> something wrong. We went to Strong Memorial Hospital in Rochester where we saw

> Dr Rubery. He confirmed that it was scoliosis, his spine was 33 degrees and he

> would have to be casted. You could imagine what I felt. My heart just breaks

> knowing he wont be able to take a bath or swim this summer. His CAT scan and

MRI

> showed no more abnormalities (thank God!). Matteo will be getting casted this

> Thur (March 17). I'm grateful for the doctor and for how he is quickly moving

> things along for Matteo. I have alot of questions about casting so if any of

you

> could help, it would be grately appreciated. Do I have to get a bigger car

seat?

> What about clothes? Do they have to be bigger to fit over the cast? How do I

> handle him wanting to take a bath? He just loves bathtime with his brother!

How

> soon will he begin his normal activities? I have more but he woke up from his

> nap! Thank you for letting me vent and I hope to hear back from some of you.

>

March 13, 2011

Jenn,

Thank you for the information. How much longer will he be in the cast for? I seen some pictures where children had a tshirt under the cast. I thought it was applied right to their body. Have you heard of Goretex casting? It is a waterproof cast used mostly for arms and legs but it is beginning to be used for scoliosis. It actually goes under the casting. I asked his Dr about it and he just said that the first few casts wont be waterproof.

Thanks again,

From: genericallyloud <jennifer.leggett@...>infantile scoliosis treatment Sent: Sat, March 12, 2011 9:10:49 PMSubject: Re: New to the group

, Welcome to the group. My son Cole, also is seen in Rochester by Dr. S. We wash casted for 10 months starting at 47 degrees laying down at 15 months. We have now been in a brace for 10 months. I can not say enough good things about the hospital there. We were fine in the normal car seat for awhile, then we switched to a booster seat because of his height with the cast on. He went up about a size in clothing. Pants are tough to keep up so we used suspenders. In terms of bath time, I would honestly switch both kids to sponge baths so I didn't have to deal with it (I know that is bad) We filled the sink and let him splash his feet in it. We got a smock so he could splash and do dishes with us. He loves that. We also got a big inflatable pool and got 20 bags of balls and made a HUGE ball pit in the play room. He LOVED it! COle was 75% normal within hours of getting cast 1 on. And within 2 weeks 100%. Learning to bend over and get up off

the ground again took some practice. Also getting used to sitting was weird at first because the cast rests on their legs, though it doesn't hurt. Honestly life in the cast has not been bad for us, the traveling to doctors was tiring but day to day living was very normal. Please feel free to call me 518-686-1452 if you want to talk, vent or ask questions. Jenn Mommy to Cole, 3 years old 47 degrees down to 0 out of brace laying down (18 standing) >> Hello, my name is and I am new to the group. I have to be very honest in > saying that I did not feel like I needed any support (like I am Superwoman!) I > really try to hold things together but not a day

goes by that I dont cry for my > son. I am a married mother of two beautiful boys ages 4 and 19 mos. I want to > share my journey. Matteo (the 19 month old) was born with a congenital hand > deformity known as hypoplastic or bilateral thumbs.On the second day of his life > I had a doctor come into my room to tell me that when the hands and the heart > are developed at the same time in utero and we needed to test his heart. I felt > as if the wind was just sucked out of me. Thankfully his heart tests came back > and everything is ok as far as the heart is concerned. My husband and I were > very grateful. A plastic surgeon came in and said he was missing some muscle and > tendon and suggested we see a hand surgeon. My husband and I along with his > sister left no rock unturned. We were constantly on the computer researching > about his conditions and looking for the best doctors.

We first traveled to > Philadelphia to the Shriner's Hospital there when he was 6 wks old. It was there > that my life was never going to be the same. The doctors told me that becuase he > was so young and had a lot of growing to do before anything was actually done > but he was most likely going to have a procedure done known as pollicization (a > far cry from what I was first told). This is where the index finger will get > moved over to take the place of the thumb. I just remember falling to the floor > with my baby in my arms crying. My husband promised me that we will see other > doctors and assured me everything was going to be fine. Well we seen two more > doctors, one in land and one in Boston and they both gave the same > diagnosis. I became very depressed. How could this happen to my baby? Why him? I > hated when people told me that "it could be alot worse".

I told them that this > IS the worse for me! As time went on Matteo was getting PT and OT and was > developing like any other baby. He is so cute and very intelligent and makes us > laugh everyday. I was finally coming to terms that this is what needs to be done > for him to have a normal functioning hand when last month we found out that he > has scoliosis. I felt as if someone just punched me in the stomach. My husband > mentioned a few times that he thought Matteo's spine was a little curved. When > bringing it to our pediatricians attention, she said it was fine, it probably > looked that way beacuse of the torticolis (yes, he was born with torticolis, I > forgot to mention that). Beacuse she was the doctor, we relied on her opinion. > Thru time his torticolis seemed to be getting better but I thought it should be > alot better by now. His PT gave me a name of a woman

who works on torticolis and > does cranial head massages. She was the one that suggested we have his spine > looked at. My husband felt so guilty, all he says is that he knew there was > something wrong. We went to Strong Memorial Hospital in Rochester where we saw > Dr Rubery. He confirmed that it was scoliosis, his spine was 33 degrees and he > would have to be casted. You could imagine what I felt. My heart just breaks > knowing he wont be able to take a bath or swim this summer. His CAT scan and MRI > showed no more abnormalities (thank God!). Matteo will be getting casted this > Thur (March 17). I'm grateful for the doctor and for how he is quickly moving > things along for Matteo. I have alot of questions about casting so if any of you > could help, it would be grately appreciated. Do I have to get a bigger car seat? > What about clothes? Do they have to be bigger to fit

over the cast? How do I > handle him wanting to take a bath? He just loves bathtime with his brother! How > soon will he begin his normal activities? I have more but he woke up from his > nap! Thank you for letting me vent and I hope to hear back from some of you.>

March 13, 2011

My son was cased for 10 months, he has now been in a brace for about 10 months. We go in 6 weeks for our 1 year brace follow up and to get a new brace. He will be in a brace for at least 6 more months, most likely a year. Many kids only need 1 year of bracing. All casts have t-shirts underneath. Some are cut along the cast and attached to it so you don't see them. The shirts are antimicrobial to help prevent skin problems. In terms of waterproof casting, they don't get as good of correction, our doctor will not use them on any curve above 20 degrees standing.

Jenn Mommy to Cole, 3 years old 47 degrees down to 0 out of brace laying down (18 standing)

On Sat, Mar 12, 2011 at 11:19 PM, Borruso <melissa.borruso@...> wrote:

Jenn,

Thank you for the information. How much longer will he be in the cast for? I seen some pictures where children had a tshirt under the cast. I thought it was applied right to their body. Have you heard of Goretex casting? It is a waterproof cast used mostly for arms and legs but it is beginning to be used for scoliosis. It actually goes under the casting. I asked his Dr about it and he just said that the first few casts wont be waterproof.

Thanks again,

From: genericallyloud <jennifer.leggett@...>infantile scoliosis treatment

Sent: Sat, March 12, 2011 9:10:49 PMSubject: Re: New to the group

, Welcome to the group. My son Cole, also is seen in Rochester by Dr. S. We wash casted for 10 months starting at 47 degrees laying down at 15 months. We have now been in a brace for 10 months. I can not say enough good things about the hospital there. We were fine in the normal car seat for awhile, then we switched to a booster seat because of his height with the cast on. He went up about a size in clothing. Pants are tough to keep up so we used suspenders. In terms of bath time, I would honestly switch both kids to sponge baths so I didn't have to deal with it (I know that is bad) We filled the sink and let him splash his feet in it. We got a smock so he could splash and do dishes with us. He loves that. We also got a big inflatable pool and got 20 bags of balls and made a HUGE ball pit in the play room. He LOVED it! COle was 75% normal within hours of getting cast 1 on. And within 2 weeks 100%. Learning to bend over and get up off

the ground again took some practice. Also getting used to sitting was weird at first because the cast rests on their legs, though it doesn't hurt. Honestly life in the cast has not been bad for us, the traveling to doctors was tiring but day to day living was very normal.

Please feel free to call me 518-686-1452 if you want to talk, vent or ask questions. Jenn Mommy to Cole, 3 years old 47 degrees down to 0 out of brace laying down (18 standing)

>> Hello, my name is and I am new to the group. I have to be very honest in

> saying that I did not feel like I needed any support (like I am Superwoman!) I > really try to hold things together but not a day

goes by that I dont cry for my > son. I am a married mother of two beautiful boys ages 4 and 19 mos. I want to > share my journey. Matteo (the 19 month old) was born with a congenital hand > deformity known as hypoplastic or bilateral thumbs.On the second day of his life

> I had a doctor come into my room to tell me that when the hands and the heart > are developed at the same time in utero and we needed to test his heart. I felt > as if the wind was just sucked out of me. Thankfully his heart tests came back

> and everything is ok as far as the heart is concerned. My husband and I were > very grateful. A plastic surgeon came in and said he was missing some muscle and > tendon and suggested we see a hand surgeon. My husband and I along with his

> sister left no rock unturned. We were constantly on the computer researching > about his conditions and looking for the best doctors.

We first traveled to > Philadelphia to the Shriner's Hospital there when he was 6 wks old. It was there > that my life was never going to be the same. The doctors told me that becuase he > was so young and had a lot of growing to do before anything was actually done

> but he was most likely going to have a procedure done known as pollicization (a > far cry from what I was first told). This is where the index finger will get > moved over to take the place of the thumb. I just remember falling to the floor

> with my baby in my arms crying. My husband promised me that we will see other > doctors and assured me everything was going to be fine. Well we seen two more > doctors, one in land and one in Boston and they both gave the same

> diagnosis. I became very depressed. How could this happen to my baby? Why him? I > hated when people told me that " it could be alot worse " .

I told them that this > IS the worse for me! As time went on Matteo was getting PT and OT and was > developing like any other baby. He is so cute and very intelligent and makes us > laugh everyday. I was finally coming to terms that this is what needs to be done

> for him to have a normal functioning hand when last month we found out that he > has scoliosis. I felt as if someone just punched me in the stomach. My husband > mentioned a few times that he thought Matteo's spine was a little curved. When

> bringing it to our pediatricians attention, she said it was fine, it probably > looked that way beacuse of the torticolis (yes, he was born with torticolis, I > forgot to mention that). Beacuse she was the doctor, we relied on her opinion.

> Thru time his torticolis seemed to be getting better but I thought it should be > alot better by now. His PT gave me a name of a woman

who works on torticolis and > does cranial head massages. She was the one that suggested we have his spine > looked at. My husband felt so guilty, all he says is that he knew there was > something wrong. We went to Strong Memorial Hospital in Rochester where we saw

> Dr Rubery. He confirmed that it was scoliosis, his spine was 33 degrees and he > would have to be casted. You could imagine what I felt. My heart just breaks > knowing he wont be able to take a bath or swim this summer. His CAT scan and MRI

> showed no more abnormalities (thank God!). Matteo will be getting casted this > Thur (March 17). I'm grateful for the doctor and for how he is quickly moving > things along for Matteo. I have alot of questions about casting so if any of you

> could help, it would be grately appreciated. Do I have to get a bigger car seat? > What about clothes? Do they have to be bigger to fit

over the cast? How do I > handle him wanting to take a bath? He just loves bathtime with his brother! How > soon will he begin his normal activities? I have more but he woke up from his > nap! Thank you for letting me vent and I hope to hear back from some of you.

>

March 31, 2011

I expect I will get some complaints on my comments if my post is even

allowed to go through. But here goes...

If you can't get raw milk, get the best whole milk you can get your hands

on. It will be fine.

As for organic fruit; in an ideal world we would have nothing but organic.

We are not in an ideal world. I buy organic when I can find what I need and

when my cash flow will allow it. When I can't find or afford the organic, I

get the best fruit that I can find that fits my needs.

Would you rather take in some pesticides along with very good for you

probiotics or not get the probiotics? Everyday take in something good for

you and cut out or reduce something bad for you. Sometimes we fall down but

as long as we get back up and keep taking baby steps, we will get to where

we are going.

Schmidt

“How can a nation be great if its bread tastes like Kleenex?” ~ Child

On Wed, Mar 30, 2011 at 5:30 PM, jpos123 <jpos123@...> wrote:

>

> I would like to know if it is worth making kefir if I have no way of

> getting raw milk. I don't know any other way to drink kefir than smoothies.

> So, if I can't get organic fruit is it still beneficial?

>

> Thanks for any help.

>

> jan

>

> --

>

March 31, 2011

Kombucha and beet kvass are very good for cleansing the liver. If you can't do

organic try and drink one of the two or both

Sent from my Verizon Wireless BlackBerry

Re: New to the group

I expect I will get some complaints on my comments if my post is even

allowed to go through. But here goes...

If you can't get raw milk, get the best whole milk you can get your hands

on. It will be fine.

As for organic fruit; in an ideal world we would have nothing but organic.

We are not in an ideal world. I buy organic when I can find what I need and

when my cash flow will allow it. When I can't find or afford the organic, I

get the best fruit that I can find that fits my needs.

Would you rather take in some pesticides along with very good for you

probiotics or not get the probiotics? Everyday take in something good for

you and cut out or reduce something bad for you. Sometimes we fall down but

as long as we get back up and keep taking baby steps, we will get to where

we are going.

Schmidt

“How can a nation be great if its bread tastes like Kleenex?” ~ Child

On Wed, Mar 30, 2011 at 5:30 PM, jpos123 <jpos123@...> wrote:

>

> I would like to know if it is worth making kefir if I have no way of

> getting raw milk. I don't know any other way to drink kefir than smoothies.

> So, if I can't get organic fruit is it still beneficial?

>

> Thanks for any help.

>

> jan

>

> --

>

April 1, 2011

I would think that any help you can give your body while on such a radical

antibiotic regime would be good.

I ran out of organic raw milk one time and used store bought pasteurized organic

milk (do not use ultra-pasteurized) and my kefir was fine and my grains were not

harmed. I have seen many posts where people use store bought milk and the kefir

turns out just fine. Raw would be better, but store bought will work. I would

also go to Weston Price website to look for local farmers offering cow/goat

shares. The number of farmers listing there grows all of the time so keep

checking back. Goat milk may actually be better for you as it is more easily

digested so you may want to consider a goat share for milk as well.

You can use conventional fruit if you cannot get organic. Again, organic is

better, but conventional is better than nothing, especially if you need to

nourish your body. There is a lot of info on the web as to which fruits are

safe to purchase conventional and which ones you really should avoid. Fruits

that you can peel such as bananas, papaya, mango, avocado, etc . . . would be

better than say strawberries because they are heavily sprayed and you typically

eat the whole berry. You can also flavor your smoothie with some flavored

stevia or extracts such as vanilla. The website mercola.com offers quality

protein powders that come in various flavors and they are all pretty good. They

are made with organic fruits, raw grass fed cow's milk and stevia. The shakes

are a bit pricey, but taste great and are packed with nutrition. I sometimes

put an avocado or a banana in mine and add peanut/almond butter with some

cinnamon.

If you search the web for Diamond Organics you will find a co-op of organic

farmers from the west coast who will ship their goods. I used the service when

I was trying to find an alternative from shopping at Whole Foods. Their

standard overnight shipping was $25, but their prices were not so bad and

comparatively the price seemed to work out close to the same in the long run. I

am sure there are others offering similar services. Also, look at the website

Local Harvest which lists your local organic farmers who offer fruit.

While some of these ideas may be a bit pricey, I would definitely trade the

money for good health anytime. As you know from dealing with your health issues

good health is priceless. I hope this info gives you some helpful ideas and

yes, I think that helping your body through this regime with the benefits of

homemade kefir would be wise. I hope your health continues to improve.

Carol Onefreespirit

>

> Hi Everybody,

>

> I have Lyme disease which has caused ulcerative colitis and many other

conditions. I have been on antibiotics for 3 yrs. This is why I am interested

in kefir.

>

> I was looking into making homemade yogurt on youtube and saw a video on kefir

that said it had more probiotics than yogurt. I have been taking probiotics for

years, but the co. just ran out of encapsulated ones and don't know when they

will have any. I have the powder, but keep forgetting to take it.

>

> I would like to know if it is worth making kefir if I have no way of getting

raw milk. I don't know any other way to drink kefir than smoothies. So, if I

can't get organic fruit is it still beneficial?

>

> Thanks for any help.

>

> jan

>

April 1, 2011

Thanks, , , and those who emailed me.

That is the way I felt , but seeing I just stumbled onto kefir I wanted

to be sure it was ok.

, I use to make kombucha, but it got to be too much for me when I became

sicker. Kefir looks easier to make, I hope it is. I like 's idea of

making it by the glass.

I haven't ordered any grains yet, but will today.

I was wondering about the water kefir, too. Do people drink both on the same

day? What if one doesn't want to drink water kefir everyday, what can you do

about the grains? Just keep feeding them some sugar?

Thanks again,

jan

April 2, 2011

Hi Jan,

" Do people drink both on the same day? "

Everyone reacts differently to the amounts of kefir they drink. From what I

have been reading on the postings here some people need to acclimate to it and

others have no issues. Give it time and go easy as you alter your recipes and

the amounts you consume to get it right for you. Also, at first you may (or

not) have some " reactions " from it (especially if you have any existing

bacterial/yeast infection) as the good bacteria and yeasts in the kefir " battle "

the bad ones for residency. Like the old spaghetti westerns, the good guys

usually win and the symptoms will subside. Listen to your body.

I drink one glass of each on the same day with no problems. There have been

some days when I have had a couple glasses of the water kefir in the same day.

I usually drink only one glass of the milk kefir though as to not have too much

dairy in one day because I also eat a bit of cheese as well.

" What if one doesn't want to drink water kefir every day, what can you do about

the grains? Just keep feeding them some sugar? "

That is correct. I would suggest making less when you brew it until you see how

much you use.

You can save what you have made for a while, but it may eventually gain an

alcohol taste as it still brews even without the grains because it still has

free floating kefir critters in it.

If you accumulate too much you can just start gifting it to friends with

instructions and some of your excess grains (as they will multiply) so they can

make it too. At last resort you can pour it down the drain. If you have to

resort to tossing the batch you will only be losing the cost of the sugar so it

is not that much of a loss.

You will need to keep your kefir grains fed so they will be healthy to make

kefir for you when you are ready to drink it. Many people put them in the

fridge to slow down the brewing process, but I have read that will weaken them a

bit if done for too long or too often.

Since I want to take good care of my guys I play it on the safe side and make

less and change my brew each day. If I have too much, I offer it to friends or

at last resort I toss it out. There is not too much of a problem in our home as

I make only a quart jar daily and we love it so it goes fast. It is a rare

occasion when we get so busy that we do not have a glass or two daily.

I hope info this helps you.

Carol Onefreespirit

>

> Thanks, , , and those who emailed me.

>

> That is the way I felt , but seeing I just stumbled onto kefir I wanted

to be sure it was ok.

>

> , I use to make kombucha, but it got to be too much for me when I became

sicker. Kefir looks easier to make, I hope it is. I like 's idea of

making it by the glass.

>

> I haven't ordered any grains yet, but will today.

>

> I was wondering about the water kefir, too. Do people drink both on the same

day? What if one doesn't want to drink water kefir everyday, what can you do

about the grains? Just keep feeding them some sugar?

>

> Thanks again,

> jan

>

April 4, 2011

Thank you, Carol.

jan

>

> Hi Jan,

> " Do people drink both on the same day? "

>

> Everyone reacts differently...

May 23, 2011

Welcome Carin. I cannot help with the question, but I did want to say

welcome to our group.

Prayer changes things.

~ Multi-faceted Jules

Wherever I stand, I stand with Israel.

From: [mailto: ] On Behalf

Of Carin Lucas

Sent: Sunday, May 22, 2011 2:21 PM

Subject: New to the group

Hi All,

I am new to your group.

I am a teacher at a high school, in a transitional program. Our students are

18-22 years old, and are one

of the main reasons I walk around with a smile on my face!

We focus on transitional living skills, to prepare our " friends " to live as

independently as possible after

high school. We do job coaching, meal planning and preparation, grocery

shopping, budgeting, banking,

transportation, fitness, using the washing machine and dryer, grooming,

along with developing social and emotional

skills. We go out to eat on Fridays, which gives our friends exposure to the

community, ordering off of

a menu, correct behavior in a restaurant, and how much to tip the waitress.

We have lots of fun times! The other day we had a spontaneous " beauty shop! "

The kids dance, exercise, try new foods,

and grow tremendously in the 3 years they are in the program. We have a

graduation ceremony the day before

they turn 22, with friends and family, and all of the students in our TEAM

Special Education Dept. (About 60 students)

Most of our students are members of Best Buddies, and many participate in

Special Olympics. Our high school special

olympic basketball team won the state tournament last year, and 4 of our 11

students were on the team!

A new program was started last year, called Opportunity Knocks. You may want

to google it. It is an unbelievable

program, and has been a huge success. The founders of the program are

brothers of one of our graduates, who

has Downs Syndrome.

All of our students have some degree of developmental/cognitive deficit.

Currently, 6 out of 11 students

have Downs Syndrome. I would say that of the 6, probably 4 of them engage is

some amount of self-talk

or like living in an imaginary world, namely with favorite characters from

television or movies. I know this is normal

in people with DS.

However, we have one student who has taken this to the extreme. It is almost

impossible to get her to engage in " the real

world. " She either talks out loud to her friends, or moves her mouth

silently, talking to them. She " kisses " them (in the air),

she flings her arms about, and at times has even been afraid of them. This

is happening at home, in the community, and

at work as well. Her parents took her to a doctor who specializes in

treating DS, and he said he has never seen anything

as severe as this. We have tried many, many things to try to help her to

engage with us, but it may last for a few minutes, at

most.

Does anyone have any experience with this behavior? We are at our wits end

as to what to do to help her. She is a very

bright young lady, and it is so hard to continue trying to help her, with no

results. It is also very disruptive to the other

students, as she requires basically 1:1.

Thanks so much, and God bless all of you for being the wonderful parents you

are, and the lucky parents you are to

have someone with DS in your life!!!

Carin

May 23, 2011

Thanks for joining the group, Carin!Â Your program sounds great, I hope you can

find some answers here.

Â

Patty

From: Carin Lucas <carin.lucas@...>

Sent: Sunday, May 22, 2011 3:20 PM

Subject: New to the group

Â

Hi All,

I am new to your group.

I am a teacher at a high school, in a transitional program. Our students are

18-22 years old, and are one

of the main reasons I walk around with a smile on my face!

We focus on transitional living skills, to prepare our " friends " to live as

independently as possible after

high school. We do job coaching, meal planning and preparation, grocery

shopping, budgeting, banking,

transportation, fitness, using the washing machine and dryer, grooming,

along with developing social and emotional

skills. We go out to eat on Fridays, which gives our friends exposure to the

community, ordering off of

a menu, correct behavior in a restaurant, and how much to tip the waitress.

We have lots of fun times! The other day we had a spontaneous " beauty shop! "

The kids dance, exercise, try new foods,

and grow tremendously in the 3 years they are in the program. We have a

graduation ceremony the day before

they turn 22, with friends and family, and all of the students in our TEAM

Special Education Dept. (About 60 students)

Most of our students are members of Best Buddies, and many participate in

Special Olympics. Our high school special

olympic basketball team won the state tournament last year, and 4 of our 11

students were on the team!

A new program was started last year, called Opportunity Knocks. You may want

to google it. It is an unbelievable

program, and has been a huge success. The founders of the program are

brothers of one of our graduates, who

has Downs Syndrome.

All of our students have some degree of developmental/cognitive deficit.

Currently, 6 out of 11 students

have Downs Syndrome. I would say that of the 6, probably 4 of them engage is

some amount of self-talk

or like living in an imaginary world, namely with favorite characters from

television or movies. I know this is normal

in people with DS.

However, we have one student who has taken this to the extreme. It is almost

impossible to get her to engage in " the real

world. " She either talks out loud to her friends, or moves her mouth

silently, talking to them. She " kisses " them (in the air),

she flings her arms about, and at times has even been afraid of them. This

is happening at home, in the community, and

at work as well. Her parents took her to a doctor who specializes in

treating DS, and he said he has never seen anything

as severe as this. We have tried many, many things to try to help her to

engage with us, but it may last for a few minutes, at

most.

Does anyone have any experience with this behavior? We are at our wits end

as to what to do to help her. She is a very

bright young lady, and it is so hard to continue trying to help her, with no

results. It is also very disruptive to the other

students, as she requires basically 1:1.

Thanks so much, and God bless all of you for being the wonderful parents you

are, and the lucky parents you are to

have someone with DS in your life!!!

Carin

May 28, 2011

Hi Liz,

I know the doctor that you are speaking of.... He used to be at NYU a few years ago. Feel free to e-mail me privately or call me if you wish.... Sometimes it helps to chat. - Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

Thanks again everyone for the support, it is appreciated.

An update to :

We went back to the doctor yesterday morning. They took at look at the shoulder straps and said "well, those are redundant, aren't they?" The straps didn't work out quite the way they thought they would, and they agreed that they could come off. So, off they came! We're very happy about that. This cast seems a lot more solid than the last cast. It seems like it will hold even better, and is a bit more snug than the last one.

Doctors were very impressed with how the cast turned out, and how Addie is doing. We did an x-ray, and she's at 18 degrees standing! That's very exciting to me! Right before she went into cast #1 in January, she was at 57*. Now she's at 18*. That seems really good, and really hopeful to me. As we are all hoping to do a brace after this (both us and her doctors), this is encouraging to me.

No MRI report back yet - may not be back until next week. Hoping that doesn't show anything. Initial indications are that things were fine. The only thing confusing everyone is Addie's bones. Her skeleton just isn't exactly "right". It's not just the scoliosis, but all of her bones. Maybe the MRI will have something to say about it? Not sure.

Father to , 3 1/2 years old, 2nd cast in San Diego

>> Thanks everyone for your well wishes and support. This doesn't get easier.> Today felt even more difficult than the first time.> > MRI was running late - so they didn't get her going until 1:45 (an hour and> 45 minutes late). That backed everything else up. Then, the doctors> surprised me with adding the "over the shoulder" piece. She didn't have> that on her first cast. It's a shock, and one I'm not sure I like.> > It took us a good 1 1/2 to get her cast all taped up nicely. The "over the> shoulder" piece on the right side was cutting into her skin, so they had to> come saw a little bit off. That was extremely scary for - she hates> the saw.> > With all the waiting we had to do for that, we didn't leave the hospital> until 9:45 tonight. We

should have been out of there by 4 today.> > Thankfully, I have you guys as a support system. I really appreciate it.> My wife, as I've mentioned in the past, is suffering from a bit of PTSD from> her own scoliosis experience as a child. She does not agree with treatment,> so this is a huge fight in our house when this happens. I do this all> alone, with no one going to the hospital with me. Although my parents are> local, one set of parents is entertaining family right now, and the other> side is vacation (they would have been here if they hadn't planned this> months ago).> > Positives - there has to be positives today, right?> > - was at 57* when she went into cast #1 in January. They got her> down to 30* at that point.> - Addie was still 30* when she got the cast off two weeks ago.> - Today we had an MRI which, on first glance,

doesn't appear to show> anything unusual. (I have mixed feelings on this - part of me wants> something there, to make the MRI "mean" something more than just "we ruled> out there is anything else" - because that just means the MRI wasn't> necessary)> - had an x-ray after. In the words of her doctor - she is> "remarkably straight".> > Yes, remarkably straight. I have a copy of the x-ray. I'm amazed. They> have her spine completely straight. I was hoping to gain just a little bit,> but to be straight? Wow.> > Emotionally, I'm drained. I just can't keep doing these castings. Our> doctor is interested in doing a brace after this, as am I, and that's what I> hope can happen. I hope we can keep the cast on for three months, get it> off, and be able to be managed by a brace for the next few years. At least> until she's old enough to start

giving us some real input on what she wants> for her condition.> > Doctors also said that her bones are "different". There is definitely some> spinal dysplacia going on, which makes our case unique.> > Sorry for the dump. Thanks for listening.> > > Father to Addie, in cast #2> > ------------------------------> > *From: * Toney > > *Sender: * infantile scoliosis treatment > > *Date: *Tue, 24 May 2011 07:32:03 -0700> > **Infantile Scoliosis Email List<infantile scoliosis treatment >> > *Reply* infantile scoliosis treatment > > *Subject: * Cast #2 Today> >> >> >> > Cast #2 for today, here in San Diego. We are doing an MRI today,> > too.>

>> >> > Frustrated that our MRI isn't schedule until 12:00PM, and the cast at> > 1:30PM - that's a long time without food (it will be nearly 6 PM before> > she's ready to eat, I'm sure). Scared for her, and hating scoliosis this> > morning. Trying to be brave for her, though. I'm sure I'll be a mess when> > I leave her with the doctors. I will be fighting to be by her side until> > the last second, as well as moving from MRI to casting.> >> > Just hopeful we can get her curve down to the lower 20s today.> >> > > > Father to , 3 1/2 years old, 29*, 2nd cast going on today> > > >>

August 15, 2011

I so sorry it's taking so long to get everthing started. I know what you mean about the red tape, we had to push and fight for my some to get casted close to home. don't give up!! where to you live? I would look into a shirners hospital that does casting And try to get in while you are waiting for the other X-rays. it can be frustrating but you know what's right for you baby mommy to Thaddeus 63* down to 38* in cast 2 On 2011-08-15, at 5:18 AM, "kookiedz" <kookiedz@...> wrote:

Hi everybody. I'm new to this group and wanted to introduce myself and my family. I'm a special education teacher, currently staying home to raise our children. Ben is 2 1/2 and Cordelia is 11 months old. Cordelia has been insistant on giving me grey hair since the moment she was born. She was hospitalzed at 2 weeks old after aspiratng reflux in the middle of the night. Her brother technically saved her that night. He had gotten up in the night for the first time in months and after tucking him back in I checked on her to find her blue and foaming at the mouth.

Shortly after it was recognized that she had torticollis and plagiocephaly. She has been in physical therapy since 4 months old but she continues to tilt. She wears an orthotic cranial belt to help reshape her head.

At five months old I was giving her a bath and noticed a bulging on the left side of her back. I immediately showed everybody, all who insisted they couldn't see anything wrong and that it probably just looked that way due to the tilt of her head. I brought her to the pediatrician who insisted that it was uneven muscle build-up from the tilt of her head. THis didn't make much sense to me even at the time since she wasn't sitting on her own or doing anything that would create so much muscle build-up. Her physical therapist concurred. So I trusted the professionals. At 9 months old she was referred to a neurosurgeon due to the persistant torticollis/plagiocephaly. She ordered an x-ray of her back after I practically begged. So she wasn't technically diagnosed until 11 months old. Her orthopedic surgeon showed us the x-rays depicting a 24* c-curve with spinal rotation. She wants to wait 6 months for the next set of x-rays. We're in limbo right now but I've been on the phone a few times insisting we don't wait 6 full months. The doctor listens and is very easy to talk to but insists that we wait. She says it wouldn't change the course of her treatment either way. So I'm frustrated considering I've been waiting for answers for 6 months and now I'm being told I have to wait another 6 months. My husband and I are on the same page and agree we'll take her somewhere else if we have to. Does anybody have any suggestions/approaches on how to push up the x-ray date? I've mentioed Dr. Min Mehta to her doctor and she sounded like she was vaguely familiar with the name but not with EDF casting. I'm gathering mateials to share with her, hoping it'll convince her to move the x-ray date up some. Of course we're praying that her curve will be self-resolving, but I've watched her rib hump grow from something that nobody else could to see into something you can see even with clothes on, so if x-rays show that it is progressive, I know I want her casted and as soon as possible. I guess I just feel like theirs miles of red tape to get through and everywhere I've turned I've hit walls. Any advice would be so appreciated! I know many of you have had similar experiences.

August 15, 2011

Hi Welcome to the group. My advice would be not to wait. My son was diagnosed at 4months and our ortho said to wait. We tried to get the ball rolling but she wouldn't move. After 8 months of waitng we finally got to medical specialists that moved quickly. And they had too. My sons curve had progressed very quickly. We are in our second cast going into our third. Just waiting to hear when they are going to do decompression surgery.If you can get a second opinion. Where are you located?Keeley Sent from my BlackBerry® wireless handheldFrom: "kookiedz" <kookiedz@...>Sender: infantile scoliosis treatment Date: Mon, 15 Aug 2011 12:18:47 -0000<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: New to the group Hi everybody. I'm new to this group and wanted to introduce myself and my family. I'm a special education teacher, currently staying home to raise our children. Ben is 2 1/2 and Cordelia is 11 months old. Cordelia has been insistant on giving me grey hair since the moment she was born. She was hospitalzed at 2 weeks old after aspiratng reflux in the middle of the night. Her brother technically saved her that night. He had gotten up in the night for the first time in months and after tucking him back in I checked on her to find her blue and foaming at the mouth.Shortly after it was recognized that she had torticollis and plagiocephaly. She has been in physical therapy since 4 months old but she continues to tilt. She wears an orthotic cranial belt to help reshape her head.At five months old I was giving her a bath and noticed a bulging on the left side of her back. I immediately showed everybody, all who insisted they couldn't see anything wrong and that it probably just looked that way due to the tilt of her head. I brought her to the pediatrician who insisted that it was uneven muscle build-up from the tilt of her head. THis didn't make much sense to me even at the time since she wasn't sitting on her own or doing anything that would create so much muscle build-up. Her physical therapist concurred. So I trusted the professionals. At 9 months old she was referred to a neurosurgeon due to the persistant torticollis/plagiocephaly. She ordered an x-ray of her back after I practically begged. So she wasn't technically diagnosed until 11 months old. Her orthopedic surgeon showed us the x-rays depicting a 24* c-curve with spinal rotation. She wants to wait 6 months for the next set of x-rays. We're in limbo right now but I've been on the phone a few times insisting we don't wait 6 full months. The doctor listens and is very easy to talk to but insists that we wait. She says it wouldn't change the course of her treatment either way. So I'm frustrated considering I've been waiting for answers for 6 months and now I'm being told I have to wait another 6 months. My husband and I are on the same page and agree we'll take her somewhere else if we have to. Does anybody have any suggestions/approaches on how to push up the x-ray date? I've mentioed Dr. Min Mehta to her doctor and she sounded like she was vaguely familiar with the name but not with EDF casting. I'm gathering mateials to share with her, hoping it'll convince her to move the x-ray date up some. Of course we're praying that her curve will be self-resolving, but I've watched her rib hump grow from something that nobody else could to see into something you can see even with clothes on, so if x-rays show that it is progressive, I know I want her casted and as soon as possible. I guess I just feel like theirs miles of redtape to get through and everywhere I've turned I've hit walls. Any advice would be so appreciated! I know many of you have had similar experiences.

August 15, 2011

I would push for x-rays in 2-3 months. Kids that age grow and progress very

quickly. I would also find the nearest Mehta trained doctor and email them the

x-rays. They can take a RVAD measurement which will indicate whether or not the

curve is likely to progress of resolve and base casting treatment on that.

Casting can be started at 9 - 12 months so it is not too early.

Jenn

Mommy to Cole & Max

>

> Hi everybody. I'm new to this group and wanted to introduce myself and my

family. I'm a special education teacher, currently staying home to raise our

children. Ben is 2 1/2 and Cordelia is 11 months old. Cordelia has been

insistant on giving me grey hair since the moment she was born. She was

hospitalzed at 2 weeks old after aspiratng reflux in the middle of the night.

Her brother technically saved her that night. He had gotten up in the night for

the first time in months and after tucking him back in I checked on her to find

her blue and foaming at the mouth.

>

> Shortly after it was recognized that she had torticollis and plagiocephaly.

She has been in physical therapy since 4 months old but she continues to tilt.

She wears an orthotic cranial belt to help reshape her head.

>

> At five months old I was giving her a bath and noticed a bulging on the left

side of her back. I immediately showed everybody, all who insisted they couldn't

see anything wrong and that it probably just looked that way due to the tilt of

her head. I brought her to the pediatrician who insisted that it was uneven

muscle build-up from the tilt of her head. THis didn't make much sense to me

even at the time since she wasn't sitting on her own or doing anything that

would create so much muscle build-up. Her physical therapist concurred. So I

trusted the professionals. At 9 months old she was referred to a neurosurgeon

due to the persistant torticollis/plagiocephaly. She ordered an x-ray of her

back after I practically begged. So she wasn't technically diagnosed until 11

months old. Her orthopedic surgeon showed us the x-rays depicting a 24* c-curve

with spinal rotation. She wants to wait 6 months for the next set of x-rays.

We're in limbo right now but I've been on the phone a few times insisting we

don't wait 6 full months. The doctor listens and is very easy to talk to but

insists that we wait. She says it wouldn't change the course of her treatment

either way. So I'm frustrated considering I've been waiting for answers for 6

months and now I'm being told I have to wait another 6 months. My husband and I

are on the same page and agree we'll take her somewhere else if we have to.

Does anybody have any suggestions/approaches on how to push up the x-ray date?

I've mentioed Dr. Min Mehta to her doctor and she sounded like she was vaguely

familiar with the name but not with EDF casting. I'm gathering mateials to

share with her, hoping it'll convince her to move the x-ray date up some. Of

course we're praying that her curve will be self-resolving, but I've watched her

rib hump grow from something that nobody else could to see into something you

can see even with clothes on, so if x-rays show that it is progressive, I know I

want her casted and as soon as possible. I guess I just feel like theirs miles

of red tape to get through and everywhere I've turned I've hit walls. Any

advice would be so appreciated! I know many of you have had similar experiences.

>

August 15, 2011

I brought her to the pediatrician who insisted that it was uneven muscle build-up from the tilt of her head. How many times have we ALL heard this! , keep following your maternal instinct on this one. Yes, its true that 90% of PIS will spontaneously correct…But, its that 10% we must keep a very close eye on and waiting another 6 months is not the best approach. My daughters scoli progressed over 50 degrees in 6 months. I know that’s extreme, but its been known to happen. Has your doc been able to measure Cordelias RVAD? This measuring technique will help determine if the scoli is of the progressive nature, or not. If the RVAD is under 20, it may not be progressive. If its over 20, it s considered progressive and treatment w/ a properly applied series of EDF must applied w/ out delay. Please read Growth as a corrective force in the early treatment of progressive infantile scoliosis by Mehta and view A New Direction DVD (in 3 parts) as soon as you can. Both of these items will give you a great understanding of the importance of Early Treatment for progressive cases.Please keep the questions coming.HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of kookiedzSent: Monday, August 15, 2011 6:19 AMinfantile scoliosis treatment Subject: New to the group Hi everybody. I'm new to this group and wanted to introduce myself and my family. I'm a special education teacher, currently staying home to raise our children. Ben is 2 1/2 and Cordelia is 11 months old. Cordelia has been insistant on giving me grey hair since the moment she was born. She was hospitalzed at 2 weeks old after aspiratng reflux in the middle of the night. Her brother technically saved her that night. He had gotten up in the night for the first time in months and after tucking him back in I checked on her to find her blue and foaming at the mouth.Shortly after it was recognized that she had torticollis and plagiocephaly. She has been in physical therapy since 4 months old but she continues to tilt. She wears an orthotic cranial belt to help reshape her head.At five months old I was giving her a bath and noticed a bulging on the left side of her back. I immediately showed everybody, all who insisted they couldn't see anything wrong and that it probably just looked that way due to the tilt of her head. I brought her to the pediatrician who insisted that it was uneven muscle build-up from the tilt of her head. THis didn't make much sense to me even at the time since she wasn't sitting on her own or doing anything that would create so much muscle build-up. Her physical therapist concurred. So I trusted the professionals. At 9 months old she was referred to a neurosurgeon due to the persistant torticollis/plagiocephaly. She ordered an x-ray of her back after I practically begged. So she wasn't technically diagnosed until 11 months old. Her orthopedic surgeon showed us the x-rays depicting a 24* c-curve with spinal rotation. She wants to wait 6 months for the next set of x-rays. We're in limbo right now but I've been on the phone a few times insisting we don't wait 6 full months. The doctor listens and is very easy to talk to but insists that we wait. She says it wouldn't change the course of her treatment either way. So I'm frustrated considering I've been waiting for answers for 6 months and now I'm being told I have to wait another 6 months. My husband and I are on the same page and agree we'll take her somewhere else if we have to. Does anybody have any suggestions/approaches on how to push up the x-ray date? I've mentioed Dr. Min Mehta to her doctor and she sounded like she was vaguely familiar with the name but not with EDF casting. I'm gathering mateials to share with her, hoping it'll convince her to move the x-ray date up some. Of course we're praying that her curve will be self-resolving, but I've watched her rib hump grow from something that nobody else could to see into something you can see even with clothes on, so if x-rays show that it is progressive, I know I want her casted and as soon as possible. I guess I just feel like theirs miles of red tape to get through and everywhere I've turned I've hit walls. Any advice would be so appreciated! I know many of you have had similar experiences.

August 15, 2011

– You have been right to

ask for answers and push for evaluations. Get a second opinion from a

doctor that does EDF casting. The shame is that many doctors think they

are up-to-date in treatment but they are not. You don’t say where

you are located. Call Shriners. If they are not the closest EDF

casting hospital, they may be able to direct you to one that is closest. Shriners

does not require medical coverage, so you can bypass your doctor’s

referral process I believe.

Best wishes,

Sherry

New

to the group

Hi everybody. I'm new to this group and wanted to

introduce myself and my family. I'm a special education teacher, currently

staying home to raise our children. Ben is 2 1/2 and Cordelia is 11 months old.

Cordelia has been insistant on giving me grey hair since the moment she was

born. She was hospitalzed at 2 weeks old after aspiratng reflux in the middle

of the night. Her brother technically saved her that night. He had gotten up in

the night for the first time in months and after tucking him back in I checked

on her to find her blue and foaming at the mouth.

Shortly after it was recognized that she had torticollis and plagiocephaly. She

has been in physical therapy since 4 months old but she continues to tilt. She

wears an orthotic cranial belt to help reshape her head.

At five months old I was giving her a bath and noticed a bulging on the left

side of her back. I immediately showed everybody, all who insisted they

couldn't see anything wrong and that it probably just looked that way due to

the tilt of her head. I brought her to the pediatrician who insisted that it

was uneven muscle build-up from the tilt of her head. THis didn't make much

sense to me even at the time since she wasn't sitting on her own or doing

anything that would create so much muscle build-up. Her physical therapist

concurred. So I trusted the professionals. At 9 months old she was referred to

a neurosurgeon due to the persistant torticollis/plagiocephaly. She ordered an

x-ray of her back after I practically begged. So she wasn't technically

diagnosed until 11 months old. Her orthopedic surgeon showed us the x-rays

depicting a 24* c-curve with spinal rotation. She wants to wait 6 months for

the next set of x-rays. We're in limbo right now but I've been on the phone a

few times insisting we don't wait 6 full months. The doctor listens and is very

easy to talk to but insists that we wait. She says it wouldn't change the

course of her treatment either way. So I'm frustrated considering I've been

waiting for answers for 6 months and now I'm being told I have to wait another

6 months. My husband and I are on the same page and agree we'll take her

somewhere else if we have to. Does anybody have any suggestions/approaches on

how to push up the x-ray date? I've mentioed Dr. Min Mehta to her doctor and

she sounded like she was vaguely familiar with the name but not with EDF

casting. I'm gathering mateials to share with her, hoping it'll convince her to

move the x-ray date up some. Of course we're praying that her curve will be

self-resolving, but I've watched her rib hump grow from something that nobody

else could to see into something you can see even with clothes on, so if x-rays

show that it is progressive, I know I want her casted and as soon as possible.

I guess I just feel like theirs miles of red tape to get through and everywhere

I've turned I've hit walls. Any advice would be so appreciated! I know many of

you have had similar experiences.

August 15, 2011

Hi ,

Your story mirrors my daughter's situation so much. She also had Torticollis,

and went to physical therapy for it. She also

wore a helmet for her Plagiocephaly and no one knew what the mysterious " hump "

was on the left side of her back. They mentioned it was probably muscular

related to the Torticollis.

We also found out it was Scoliosis by accident when she had her 1st Croup attack

at 7 months and the ER did a lung xray just to be sure and the curve was clearly

there. We did the wait & see thing for a whole year and she was finally casted

by Shriner's at 21 months and 45 degrees. We went through almost 2 and a half

years of casting, I sometimes wonder if she was casted earlier, maybe that time

would have been cut in half. But long story short, she is in a brace now and

shows no signs of a curve.

So glad you found this group. Go with your gut.

Rita (mom to Kate)