new here....

[Guest guest]

Hi . There are no symptoms of varicies. If he has Portal

Hypertension, and he probably does if he has cirrhosis, then

chances are very good that he has some. An endoscopy w/ banding

will take care of the problem. get a scrip for Nexium afterwards

for quick healing (ask for samples). It's a procedure that

should be done yearly.....your friend.....ric

[Guest guest]

I emailed somebody that has had several episodes of variceal bleeding.

Here's what he said about symptoms....

" Any Nose Bleeds or Blood when you cough or sneeze.

Dark Stools is another big way or Hemmerhoids.

These are pretty nuch the most common at least for me.

After a slight Bit of Blood in my mucus and Dark Stools

it just started really quickly "

I will add ......Vomiting blood and decreased urine output.

Treatment is usually something like Nexium to control stomach acid and a Beta

Blocker to decrease the portal hypertensin. Banding is done for acute

bleeding or prophilaxis.

Silvia

[Guest guest]

Hi

Welcome to the group,, Im sure silvia will come along or Ric to answer some of

your questions,,

jax

ifonlyouknew <ifonlyouknew@...> wrote:

Hiya Everyone,

I'm new to the group, my husband was diagnosed with Hep C...1a..low

viral load and 4th stage cirro. He is now taking interferon with

ribavrin. My quetion is, we understand what variceal bleeding is, we

understand that he will be scoped for it in Nov, but does anyone here

know the signs prior to a scope that would make us think it may be

occuring, ie...symptoms. I've read everything I can get my hands on a

via internet and cannot find a symptoms chart persay on what to watch

for. We're being very positive about results from this treatment and

as long as is viral load responds they see a bit of a brighter future

for us. His liver of course will never heal properly, but with good

nutrition and following doctors reccomendations, I stay positive,

but...one huge side effect with Interferon/Ribavrin therapy is

irritability...I'm sure others have had this...any suggestions? Hey

thanks for allowing me into the group. This is partially for me too,

his wife and my name is ...Hope to hear from you all soon.

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

support you need with us.

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

the link-- Hepatitis C/

Happy Posting

[Guest guest]

Thank you Silvia, I knew you would come along and answer this,, :-)

Bhprice425@... wrote:I emailed somebody that has had several episodes of

variceal bleeding.

Here's what he said about symptoms....

" Any Nose Bleeds or Blood when you cough or sneeze.

Dark Stools is another big way or Hemmerhoids.

These are pretty nuch the most common at least for me.

After a slight Bit of Blood in my mucus and Dark Stools

it just started really quickly "

I will add ......Vomiting blood and decreased urine output.

Treatment is usually something like Nexium to control stomach acid and a Beta

Blocker to decrease the portal hypertensin. Banding is done for acute

bleeding or prophilaxis.

Silvia

[Guest guest]

Coffe ground type of vomit indicates bleeding varices also

Re: New Here....

Thank you Silvia, I knew you would come along and answer this,, :-)

Bhprice425@... wrote:I emailed somebody that has had several episodes of

variceal bleeding.

Here's what he said about symptoms....

" Any Nose Bleeds or Blood when you cough or sneeze.

Dark Stools is another big way or Hemmerhoids.

These are pretty nuch the most common at least for me.

After a slight Bit of Blood in my mucus and Dark Stools

it just started really quickly "

I will add ......Vomiting blood and decreased urine output.

Treatment is usually something like Nexium to control stomach acid and a Beta

Blocker to decrease the portal hypertensin. Banding is done for acute

bleeding or prophilaxis.

Silvia

[Guest guest]

Hey YOU!!! I thought you were gone,, how are you? did you get all your

furniture shopping done?

elizabethnv1 <elizabethnv1@...> wrote:Coffe ground type of vomit

indicates bleeding varices also

Re: New Here....

Thank you Silvia, I knew you would come along and answer this,, :-)

Bhprice425@... wrote:I emailed somebody that has had several episodes of

variceal bleeding.

Here's what he said about symptoms....

" Any Nose Bleeds or Blood when you cough or sneeze.

Dark Stools is another big way or Hemmerhoids.

These are pretty nuch the most common at least for me.

After a slight Bit of Blood in my mucus and Dark Stools

it just started really quickly "

I will add ......Vomiting blood and decreased urine output.

Treatment is usually something like Nexium to control stomach acid and a Beta

Blocker to decrease the portal hypertensin. Banding is done for acute

bleeding or prophilaxis.

Silvia

[Guest guest]

We leave on Friday so we have just been spending the last few days ...spending

rofl . So far we have purchased 2 complete bedroom sets including the armouir, 2

couches a chair with ottoman , sofa table , coffee table , and last but not

least an end table ... Tomorrow I will purchase the new entertainment center ,

rug and one more bedroom set . Daymon just now purchased 3 dell diminsion desk

top computers for all the girls . Oh I cant wait for you and to see my new

living room set , finally furniture I can be proud of ,hehehe . He wants to

have all the cats declawed (how barbaric) luv ya

Re: New Here....

Thank you Silvia, I knew you would come along and answer this,, :-)

Bhprice425@... wrote:I emailed somebody that has had several episodes of

variceal bleeding.

Here's what he said about symptoms....

" Any Nose Bleeds or Blood when you cough or sneeze.

Dark Stools is another big way or Hemmerhoids.

These are pretty nuch the most common at least for me.

After a slight Bit of Blood in my mucus and Dark Stools

it just started really quickly "

I will add ......Vomiting blood and decreased urine output.

Treatment is usually something like Nexium to control stomach acid and a

Beta

Blocker to decrease the portal hypertensin. Banding is done for acute

bleeding or prophilaxis.

Silvia

[Guest guest]

We leave on Friday so we have just been spending the last few days ...spending

rofl . So far we have purchased 2 complete bedroom sets including the armouir, 2

couches a chair with ottoman , sofa table , coffee table , and last but not

least an end table ... Tomorrow I will purchase the new entertainment center ,

rug and one more bedroom set . Daymon just now purchased 3 dell diminsion desk

top computers for all the girls . Oh I cant wait for you and to see my new

living room set , finally furniture I can be proud of ,hehehe . He wants to

have all the cats declawed (how barbaric) luv ya

Re: New Here....

Thank you Silvia, I knew you would come along and answer this,, :-)

Bhprice425@... wrote:I emailed somebody that has had several episodes of

variceal bleeding.

Here's what he said about symptoms....

" Any Nose Bleeds or Blood when you cough or sneeze.

Dark Stools is another big way or Hemmerhoids.

These are pretty nuch the most common at least for me.

After a slight Bit of Blood in my mucus and Dark Stools

it just started really quickly "

I will add ......Vomiting blood and decreased urine output.

Treatment is usually something like Nexium to control stomach acid and a

Beta

Blocker to decrease the portal hypertensin. Banding is done for acute

bleeding or prophilaxis.

Silvia

[Guest guest]

sounds fab,, cant wait to see ya

elizabethnv1 <elizabethnv1@...> wrote:We leave on Friday so we have

just been spending the last few days ...spending rofl . So far we have purchased

2 complete bedroom sets including the armouir, 2 couches a chair with ottoman ,

sofa table , coffee table , and last but not least an end table ... Tomorrow I

will purchase the new entertainment center , rug and one more bedroom set .

Daymon just now purchased 3 dell diminsion desk top computers for all the girls

.. Oh I cant wait for you and to see my new living room set , finally

furniture I can be proud of ,hehehe . He wants to have all the cats declawed

(how barbaric) luv ya

Re: New Here....

Thank you Silvia, I knew you would come along and answer this,, :-)

Bhprice425@... wrote:I emailed somebody that has had several episodes of

variceal bleeding.

Here's what he said about symptoms....

" Any Nose Bleeds or Blood when you cough or sneeze.

Dark Stools is another big way or Hemmerhoids.

These are pretty nuch the most common at least for me.

After a slight Bit of Blood in my mucus and Dark Stools

it just started really quickly "

I will add ......Vomiting blood and decreased urine output.

Treatment is usually something like Nexium to control stomach acid and a

Beta

Blocker to decrease the portal hypertensin. Banding is done for acute

bleeding or prophilaxis.

Silvia

[Guest guest]

Hi ,First welcome to CAST! I am so happy you found us. You are definitly n the right place for great advice from experienced parents. I know there are a lot of others that there kids have some of the same issues with low muscle tone and tortecollis. I'm sure they too will chime in soon. Don't let casting scare you it truly is not so bad. These kids are amazing how they just adapt to cast life. Kids are pretty resilient as I'm sure you already know. Your son is at the perfect age to really benefit the most from casting. My daughter is 4 and started casting just 8 months ago and is getting great correction. We started at 56* curvature and now we are at 15* in cast. As you are researching casting please make sure you Dr. does Mehta cast. This is essential to get the best results for you baby. There is an article on our group page you should read "Growth as the Corrective Force" by Dr Mehta. Also please continue to ask us any question that may come to mined. Hope this helps some.Amy J mom to Allie(4) in 5th cast down to 15* from 56* Greenville Sc. Shriners Sent from my Verizon Wireless BlackBerryFrom: "jamieboros" <jayann_24@...>Sender: infantile scoliosis treatment Date: Wed, 01 Sep 2010 00:59:31 +0000<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: New here.... Hi, my name is and I am a single Mom to who is just about a week shy of 9 months old. He has had a rough go overall and his situation seems to get more complex as time goes on rather then improving. He was a healthy full term baby with no issues during pregnancy. At 10 days old he started suffering from extreme reflux. He has had weight gain issues and now has not gained anything in 2 months and has dropped under the 5th percentile. He also has tortecollis and low muscle tone which we see a physical therapist for. The PT noticed at her last visit that his spine was curved. The pediatrician referred us to an orthopedic dr where we had x rays that were inconclusive. The next step is an MRI that will be coming up in the next few weeks. As there has been no official diagnosis yet, the pediatrician is wondering if there may be a genetic disease causing all of these issues? We talked today and he is referring us to a genectic dr, a pediatric GI specialist and possibly a neuro muscular dr. is mentally sharp and a very happy boy but his gross motor is lacking. He is unable to sit up on his own and is not even close to crawling. He just started rolling over during his 6th month. We have been to the dr very frequently his whole life and are actually on pediatrician #3...and I am happy with him! yay! It's difficult to try to " recap " his situation but I'm wondering if based on this information if any families on here have any similar circumstances? I am fortunate to be close to Doernbecher Children's hospital as well as Shriners in Portland, Oregon but sometimes talking things over with parent's who have " been there " is more therapueutic and tend to have something that causes an " ah ha " moment with me for new questions to ask or things to try. After the spine MRI, the orthopedic dr is predicting casting, so I'm hoping to gain knowledge about that as well as to know if any of your Children have a similar scenario as . Thanks for reading, I look forward to getting to know you all as we go through our journey's. ~

[Guest guest]

Hi .

My son sat at 9 months, walked at 20 months and didn't speak any word

at all until he was around 2 1/2. He has fine and gross motor skill issues and

low muscle tone. He was identified with a genetic issue around 2 yrs old. A lot

of kids with the syndrome my son has aren't diagnosed u ntil around two because

the signs slowly begin to emerge.

We had a basic genetic test done I think called sequencing??? Can't remember. It

came back fine. Later he was tested for sotos sydrome and has a gene mutation. I

actually figured out what was wrong with my baby before doctors did.

Your child is probably just fine. A crooked spine can cause gross motor issues

I don't mean to make you nervous - just know that one genetic test if it

comes to that may not mean there isn't something going on. My son is 3 1/2 and

us doing fantastic!

Best wishes

-Tame

Sent from my iPhone

On Aug 31, 2010, at 7:59 PM, " jamieboros " <jayann_24@...> wrote:

Hi, my name is and I am a single Mom to who is just about a week

shy of 9 months old. He has had a rough go overall and his situation seems to

get more complex as time goes on rather then improving. He was a healthy full

term baby with no issues during pregnancy.

At 10 days old he started suffering from extreme reflux. He has had weight gain

issues and now has not gained anything in 2 months and has dropped under the 5th

percentile. He also has tortecollis and low muscle tone which we see a physical

therapist for. The PT noticed at her last visit that his spine was curved. The

pediatrician referred us to an orthopedic dr where we had x rays that were

inconclusive. The next step is an MRI that will be coming up in the next few

weeks.

As there has been no official diagnosis yet, the pediatrician is wondering if

there may be a genetic disease causing all of these issues? We talked today and

he is referring us to a genectic dr, a pediatric GI specialist and possibly a

neuro muscular dr.

is mentally sharp and a very happy boy but his gross motor is lacking. He

is unable to sit up on his own and is not even close to crawling. He just

started rolling over during his 6th month.

We have been to the dr very frequently his whole life and are actually on

pediatrician #3...and I am happy with him! yay!

It's difficult to try to " recap " his situation but I'm wondering if based on

this information if any families on here have any similar circumstances? I am

fortunate to be close to Doernbecher Children's hospital as well as Shriners in

Portland, Oregon but sometimes talking things over with parent's who have " been

there " is more therapueutic and tend to have something that causes an " ah ha "

moment with me for new questions to ask or things to try.

After the spine MRI, the orthopedic dr is predicting casting, so I'm hoping to

gain knowledge about that as well as to know if any of your Children have a

similar scenario as .

Thanks for reading, I look forward to getting to know you all as we go through

our journey's.

~

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

[Guest guest]

Hey !

Logan was 9 months old when we started casting. He also had the torticollis ---so we went to PT for that...because he loved the right side so much..he dev a flat spot on his head...so he wore a helmet also...yes with the cast. He does not have the low muscle tone issue....but we decided to go with casting ASAP. He is 14 months now and doing great. He learned to crawl and walk IN the cast....honestly...it seems to have made him stronger..I swear he is the smallest strong man right now! lol! My husband says we are just weight training him and he is going to have the best 6 pack when he is done! If you have any questions --this group is AWESOME and has great advise...it seems like there is always one other mom or dad that has gone through the same situation that you can connect with.

Logan's mama (45 down to 0 in 4th cast, 14 months old.)

From: jamieboros <jayann_24@...>infantile scoliosis treatment Sent: Tue, August 31, 2010 8:59:31 PMSubject: New here....

Hi, my name is and I am a single Mom to who is just about a week shy of 9 months old. He has had a rough go overall and his situation seems to get more complex as time goes on rather then improving. He was a healthy full term baby with no issues during pregnancy. At 10 days old he started suffering from extreme reflux. He has had weight gain issues and now has not gained anything in 2 months and has dropped under the 5th percentile. He also has tortecollis and low muscle tone which we see a physical therapist for. The PT noticed at her last visit that his spine was curved. The pediatrician referred us to an orthopedic dr where we had x rays that were inconclusive. The next step is an MRI that will be coming up in the next few weeks. As there has been no official diagnosis yet, the pediatrician is wondering if there may be a genetic disease causing all of these issues? We talked today and he is referring us to a genectic

dr, a pediatric GI specialist and possibly a neuro muscular dr. is mentally sharp and a very happy boy but his gross motor is lacking. He is unable to sit up on his own and is not even close to crawling. He just started rolling over during his 6th month. We have been to the dr very frequently his whole life and are actually on pediatrician #3...and I am happy with him! yay! It's difficult to try to "recap" his situation but I'm wondering if based on this information if any families on here have any similar circumstances? I am fortunate to be close to Doernbecher Children's hospital as well as Shriners in Portland, Oregon but sometimes talking things over with parent's who have "been there" is more therapueutic and tend to have something that causes an "ah ha" moment with me for new questions to ask or things to try. After the spine MRI, the orthopedic dr is predicting casting, so I'm hoping to gain knowledge about

that as well as to know if any of your Children have a similar scenario as . Thanks for reading, I look forward to getting to know you all as we go through our journey's. ~

[Guest guest]

Welcome to CAST ! I am so sorry that your little one is having so many problems but I'm so glad you found this group! Everyone here is very helpful and there are moms here whose children have the same conditions your son has so I'm sure they will help you out. As for casting, there is a lot of information on the ISOP home page that will help you out. Good luck and keep us posted on whether or not you'll be doing casting. Patty, mom of Isabella, 3 years old, in 7th scoli cast (Rochester) & mom to (9) & Evan(6)From: jamieboros <jayann_24@...>infantile scoliosis treatment Sent: Tue, August 31, 2010 8:59:31 PMSubject: New here....

Hi, my name is and I am a single Mom to who is just about a week shy of 9 months old. He has had a rough go overall and his situation seems to get more complex as time goes on rather then improving. He was a healthy full term baby with no issues during pregnancy.

At 10 days old he started suffering from extreme reflux. He has had weight gain issues and now has not gained anything in 2 months and has dropped under the 5th percentile. He also has tortecollis and low muscle tone which we see a physical therapist for. The PT noticed at her last visit that his spine was curved. The pediatrician referred us to an orthopedic dr where we had x rays that were inconclusive. The next step is an MRI that will be coming up in the next few weeks.

As there has been no official diagnosis yet, the pediatrician is wondering if there may be a genetic disease causing all of these issues? We talked today and he is referring us to a genectic dr, a pediatric GI specialist and possibly a neuro muscular dr.

is mentally sharp and a very happy boy but his gross motor is lacking. He is unable to sit up on his own and is not even close to crawling. He just started rolling over during his 6th month.

We have been to the dr very frequently his whole life and are actually on pediatrician #3...and I am happy with him! yay!

It's difficult to try to "recap" his situation but I'm wondering if based on this information if any families on here have any similar circumstances? I am fortunate to be close to Doernbecher Children's hospital as well as Shriners in Portland, Oregon but sometimes talking things over with parent's who have "been there" is more therapueutic and tend to have something that causes an "ah ha" moment with me for new questions to ask or things to try.

After the spine MRI, the orthopedic dr is predicting casting, so I'm hoping to gain knowledge about that as well as to know if any of your Children have a similar scenario as .

Thanks for reading, I look forward to getting to know you all as we go through our journey's.

~

[Guest guest]

Hi ,

In a lot of ways, our stories have a lot of similarities. Noelle has reflux, ligament laxity, torticollis, hypotonia and is suspected of having Ehler's Danlos III as an underlying connective tissue disease in addition to the scoliosis. She has been able to hit all of her fine, gross and cognitive milestones, though. Because of her rib hump, she didn't roll over until she was 7 months old and could only sit up if she propped herself up with one hand.... Otherwise she would topple over. We also see a geneticist, neurologist and our ortho on a regular basis and have seen an opthamologist, cardiologist and GI specialist. The vast majority of her tests have come back completely normal, thank God. And we are currently on ped #2. The majority of the tests you will need are done to simply rule out other issues, so don't be alarmed if you are asked for others in addition to the MRI. I was really

freaked out at first until I realized that the testing was really part of the routine. Please let me know if there is anything I can help you with or if you would like to chat by phone.- Noelle's mommy, 3 1/2 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and currently in cast 9reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: jamieboros <jayann_24@...>Subject: New here....infantile scoliosis treatment Date: Wednesday, September 1, 2010, 12:59 AM

Hi, my name is and I am a single Mom to who is just about a week shy of 9 months old. He has had a rough go overall and his situation seems to get more complex as time goes on rather then improving. He was a healthy full term baby with no issues during pregnancy. At 10 days old he started suffering from extreme reflux. He has had weight gain issues and now has not gained anything in 2 months and has dropped under the 5th percentile. He also has tortecollis and low muscle tone which we see a physical therapist for. The PT noticed at her last visit that his spine was curved. The pediatrician referred us to an orthopedic dr where we had x rays that were inconclusive. The next step is an MRI that will be coming up in the next few weeks. As there has been no official diagnosis yet, the pediatrician is wondering if there may be a genetic disease causing all of these issues? We talked today and he is referring us to a genectic

dr, a pediatric GI specialist and possibly a neuro muscular dr. is mentally sharp and a very happy boy but his gross motor is lacking. He is unable to sit up on his own and is not even close to crawling. He just started rolling over during his 6th month. We have been to the dr very frequently his whole life and are actually on pediatrician #3...and I am happy with him! yay! It's difficult to try to "recap" his situation but I'm wondering if based on this information if any families on here have any similar circumstances? I am fortunate to be close to Doernbecher Children's hospital as well as Shriners in Portland, Oregon but sometimes talking things over with parent's who have "been there" is more therapueutic and tend to have something that causes an "ah ha" moment with me for new questions to ask or things to try. After the spine MRI, the orthopedic dr is predicting casting, so I'm hoping to gain knowledge about

that as well as to know if any of your Children have a similar scenario as . Thanks for reading, I look forward to getting to know you all as we go through our journey's. ~

[Guest guest]

Amy,

Thank you for the warm welcome. I can tell already this is the place to be for

encouragement! Thank you for the casting details and the reading suggestion. I

am sure I will have plenty of casting questions once we are actually there. I am

so happy to have a group of parents who are so supportive and knowledgable to

get through this with!

>

> Hi ,

> First welcome to CAST! I am so happy you found us. You are definitly n the

right place for great advice from experienced parents. I know there are a lot of

others that there kids have some of the same issues with low muscle tone and

tortecollis. I'm sure they too will chime in soon. Don't let casting scare you

it truly is not so bad. These kids are amazing how they just adapt to cast life.

Kids are pretty resilient as I'm sure you already know. Your son is at the

perfect age to really benefit the most from casting. My daughter is 4 and

started casting just 8 months ago and is getting great correction. We started at

56* curvature and now we are at 15* in cast. As you are researching casting

please make sure you Dr. does Mehta cast. This is essential to get the best

results for you baby. There is an article on our group page you should read

" Growth as the Corrective Force " by Dr Mehta. Also please continue to ask us any

question that may come to mined. Hope this helps some.

>

> Amy J mom to Allie(4) in 5th cast down to 15* from 56* Greenville Sc. Shriners

> Sent from my Verizon Wireless BlackBerry

>

> -----Original Message-----

> From: " jamieboros " <jayann_24@...>

> Sender: infantile scoliosis treatment

> Date: Wed, 01 Sep 2010 00:59:31

> <infantile scoliosis treatment >

> Reply-to: infantile scoliosis treatment@...: New here....

>

> Hi, my name is and I am a single Mom to who is just about a week

shy of 9 months old. He has had a rough go overall and his situation seems to

get more complex as time goes on rather then improving. He was a healthy full

term baby with no issues during pregnancy.

>

> At 10 days old he started suffering from extreme reflux. He has had weight

gain issues and now has not gained anything in 2 months and has dropped under

the 5th percentile. He also has tortecollis and low muscle tone which we see a

physical therapist for. The PT noticed at her last visit that his spine was

curved. The pediatrician referred us to an orthopedic dr where we had x rays

that were inconclusive. The next step is an MRI that will be coming up in the

next few weeks.

>

> As there has been no official diagnosis yet, the pediatrician is wondering if

there may be a genetic disease causing all of these issues? We talked today and

he is referring us to a genectic dr, a pediatric GI specialist and possibly a

neuro muscular dr.

>

> is mentally sharp and a very happy boy but his gross motor is lacking.

He is unable to sit up on his own and is not even close to crawling. He just

started rolling over during his 6th month.

>

> We have been to the dr very frequently his whole life and are actually on

pediatrician #3...and I am happy with him! yay!

>

> It's difficult to try to " recap " his situation but I'm wondering if based on

this information if any families on here have any similar circumstances? I am

fortunate to be close to Doernbecher Children's hospital as well as Shriners in

Portland, Oregon but sometimes talking things over with parent's who have " been

there " is more therapueutic and tend to have something that causes an " ah ha "

moment with me for new questions to ask or things to try.

>

> After the spine MRI, the orthopedic dr is predicting casting, so I'm hoping to

gain knowledge about that as well as to know if any of your Children have a

similar scenario as .

>

> Thanks for reading, I look forward to getting to know you all as we go through

our journey's.

>

> ~

>

[Guest guest]

Tame,

Thank you for the note about genetic testing. It will be great going in with any

information possible. Our appt with the genetic and neuromuscular specialists is

set for Oct. 5th. Maybe we'll get some answers? I can certainly hope! It is

encouraging to hear that your son is doing well! Great news!

>

> Hi, my name is and I am a single Mom to who is just about a week

shy of 9 months old. He has had a rough go overall and his situation seems to

get more complex as time goes on rather then improving. He was a healthy full

term baby with no issues during pregnancy.

>

> At 10 days old he started suffering from extreme reflux. He has had weight

gain issues and now has not gained anything in 2 months and has dropped under

the 5th percentile. He also has tortecollis and low muscle tone which we see a

physical therapist for. The PT noticed at her last visit that his spine was

curved. The pediatrician referred us to an orthopedic dr where we had x rays

that were inconclusive. The next step is an MRI that will be coming up in the

next few weeks.

>

> As there has been no official diagnosis yet, the pediatrician is wondering if

there may be a genetic disease causing all of these issues? We talked today and

he is referring us to a genectic dr, a pediatric GI specialist and possibly a

neuro muscular dr.

>

> is mentally sharp and a very happy boy but his gross motor is lacking.

He is unable to sit up on his own and is not even close to crawling. He just

started rolling over during his 6th month.

>

> We have been to the dr very frequently his whole life and are actually on

pediatrician #3...and I am happy with him! yay!

>

> It's difficult to try to " recap " his situation but I'm wondering if based on

this information if any families on here have any similar circumstances? I am

fortunate to be close to Doernbecher Children's hospital as well as Shriners in

Portland, Oregon but sometimes talking things over with parent's who have " been

there " is more therapueutic and tend to have something that causes an " ah ha "

moment with me for new questions to ask or things to try.

>

> After the spine MRI, the orthopedic dr is predicting casting, so I'm hoping to

gain knowledge about that as well as to know if any of your Children have a

similar scenario as .

>

> Thanks for reading, I look forward to getting to know you all as we go through

our journey's.

>

> ~

>

>

>

>

>

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

>

>

[Guest guest]

Sonja,

We are very fortunate to live close to such great hospitals. I almost moved to

NE Nevada a few months ago and now couldn't be more thankful it fell through!

I will be thinking of you and Jake on Oct. 7th. I hope the casting goes smoothly

and Jake adapts well.

I look forward to hearing about your experience at Shriners Portland.

>

> Hi, my name is and I am a single Mom to who is just about a week

shy of 9 months old. He has had a rough go overall and his situation seems to

get more complex as time goes on rather then improving. He was a healthy full

term baby with no issues during pregnancy.

>

> At 10 days old he started suffering from extreme reflux. He has had weight

gain issues and now has not gained anything in 2 months and has dropped under

the 5th percentile. He also has tortecollis and low muscle tone which we see a

physical therapist for. The PT noticed at her last visit that his spine was

curved. The pediatrician referred us to an orthopedic dr where we had x rays

that were inconclusive. The next step is an MRI that will be coming up in the

next few weeks.

>

> As there has been no official diagnosis yet, the pediatrician is wondering if

there may be a genetic disease causing all of these issues? We talked today and

he is referring us to a genectic dr, a pediatric GI specialist and possibly a

neuro muscular dr.

>

> is mentally sharp and a very happy boy but his gross motor is lacking.

He is unable to sit up on his own and is not even close to crawling. He just

started rolling over during his 6th month.

>

> We have been to the dr very frequently his whole life and are actually on

pediatrician #3...and I am happy with him! yay!

>

> It's difficult to try to " recap " his situation but I'm wondering if based on

this information if any families on here have any similar circumstances? I am

fortunate to be close to Doernbecher Children's hospital as well as Shriners in

Portland, Oregon but sometimes talking things over with parent's who have " been

there " is more therapueutic and tend to have something that causes an " ah ha "

moment with me for new questions to ask or things to try.

>

> After the spine MRI, the orthopedic dr is predicting casting, so I'm hoping to

gain knowledge about that as well as to know if any of your Children have a

similar scenario as .

>

> Thanks for reading, I look forward to getting to know you all as we go through

our journey's.

>

> ~

>

[Guest guest]

,

The PT had talked to us about a helmet but the ped said 9 months was too late? What age did you start Logan in the helmet?

I'm encouraged to hear he has learned how to crawl and walk in the cast. I hope has the same success! Ann Borosjayann_24@...

infantile scoliosis treatment From: amanda.medlin@...Date: Wed, 1 Sep 2010 05:43:50 -0700Subject: Re: New here....

Hey !

Logan was 9 months old when we started casting. He also had the torticollis ---so we went to PT for that...because he loved the right side so much..he dev a flat spot on his head...so he wore a helmet also...yes with the cast. He does not have the low muscle tone issue....but we decided to go with casting ASAP. He is 14 months now and doing great. He learned to crawl and walk IN the cast....honestly...it seems to have made him stronger..I swear he is the smallest strong man right now! lol! My husband says we are just weight training him and he is going to have the best 6 pack when he is done! If you have any questions --this group is AWESOME and has great advise...it seems like there is always one other mom or dad that has gone through the same situation that you can connect with.

Logan's mama (45 down to 0 in 4th cast, 14 months old.)

From: jamieboros <jayann_24@...>infantile scoliosis treatment Sent: Tue, August 31, 2010 8:59:31 PMSubject: New here....

Hi, my name is and I am a single Mom to who is just about a week shy of 9 months old. He has had a rough go overall and his situation seems to get more complex as time goes on rather then improving. He was a healthy full term baby with no issues during pregnancy. At 10 days old he started suffering from extreme reflux. He has had weight gain issues and now has not gained anything in 2 months and has dropped under the 5th percentile. He also has tortecollis and low muscle tone which we see a physical therapist for. The PT noticed at her last visit that his spine was curved. The pediatrician referred us to an orthopedic dr where we had x rays that were inconclusive. The next step is an MRI that will be coming up in the next few weeks. As there has been no official diagnosis yet, the pediatrician is wondering if there may be a genetic disease causing all of these issues? We talked today and he is referring us to a genectic dr, a pediatric GI specialist and possibly a neuro muscular dr. is mentally sharp and a very happy boy but his gross motor is lacking. He is unable to sit up on his own and is not even close to crawling. He just started rolling over during his 6th month. We have been to the dr very frequently his whole life and are actually on pediatrician #3...and I am happy with him! yay! It's difficult to try to "recap" his situation but I'm wondering if based on this information if any families on here have any similar circumstances? I am fortunate to be close to Doernbecher Children's hospital as well as Shriners in Portland, Oregon but sometimes talking things over with parent's who have "been there" is more therapueutic and tend to have something that causes an "ah ha" moment with me for new questions to ask or things to try. After the spine MRI, the orthopedic dr is predicting casting, so I'm hoping to gain knowledge about that as well as to know if any of your Children have a similar scenario as . Thanks for reading, I look forward to getting to know you all as we go through our journey's. ~

[Guest guest]

,

Thank you for the generous offer of being there, even by telephone. I will definately keep you in mind as we go through this journey!

Any tests really had me upset at the beginning, but I am a little more relaxed (if that's possible) about them now. The MRI however will be under anasthesia which makes me quite nervous.

I hope the second pediatrician you have found is a good one! Finding the right connection when advocating for our precious little children is so important and can be so hard to find!

infantile scoliosis treatment From: slguerra710@...Date: Wed, 1 Sep 2010 14:49:05 -0700Subject: Re: New here....

Hi ,

In a lot of ways, our stories have a lot of similarities. Noelle has reflux, ligament laxity, torticollis, hypotonia and is suspected of having Ehler's Danlos III as an underlying connective tissue disease in addition to the scoliosis. She has been able to hit all of her fine, gross and cognitive milestones, though. Because of her rib hump, she didn't roll over until she was 7 months old and could only sit up if she propped herself up with one hand.... Otherwise she would topple over. We also see a geneticist, neurologist and our ortho on a regular basis and have seen an opthamologist, cardiologist and GI specialist. The vast majority of her tests have come back completely normal, thank God. And we are currently on ped #2. The majority of the tests you will need are done to simply rule out other issues, so don't be alarmed if you are asked for others in addition to the MRI. I was really freaked out at first until I realized that the testing was really part of the routine. Please let me know if there is anything I can help you with or if you would like to chat by phone.- Noelle's mommy, 3 1/2 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and currently in cast 9reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: jamieboros <jayann_24@...>Subject: New here....infantile scoliosis treatment Date: Wednesday, September 1, 2010, 12:59 AM

Hi, my name is and I am a single Mom to who is just about a week shy of 9 months old. He has had a rough go overall and his situation seems to get more complex as time goes on rather then improving. He was a healthy full term baby with no issues during pregnancy. At 10 days old he started suffering from extreme reflux. He has had weight gain issues and now has not gained anything in 2 months and has dropped under the 5th percentile. He also has tortecollis and low muscle tone which we see a physical therapist for. The PT noticed at her last visit that his spine was curved. The pediatrician referred us to an orthopedic dr where we had x rays that were inconclusive. The next step is an MRI that will be coming up in the next few weeks. As there has been no official diagnosis yet, the pediatrician is wondering if there may be a genetic disease causing all of these issues? We talked today and he is referring us to a genectic dr, a pediatric GI specialist and possibly a neuro muscular dr. is mentally sharp and a very happy boy but his gross motor is lacking. He is unable to sit up on his own and is not even close to crawling. He just started rolling over during his 6th month. We have been to the dr very frequently his whole life and are actually on pediatrician #3...and I am happy with him! yay! It's difficult to try to "recap" his situation but I'm wondering if based on this information if any families on here have any similar circumstances? I am fortunate to be close to Doernbecher Children's hospital as well as Shriners in Portland, Oregon but sometimes talking things over with parent's who have "been there" is more therapueutic and tend to have something that causes an "ah ha" moment with me for new questions to ask or things to try. After the spine MRI, the orthopedic dr is predicting casting, so I'm hoping to gain knowledge about that as well as to know if any of your Children have a similar scenario as . Thanks for reading, I look forward to getting to know you all as we go through our journey's. ~

[Guest guest]

---

We started Logan in a helmet at 5 months old. BUT there were kids over 1 year there....they got correction as well....it just took them a bit longer. Some kids frontal process on the skull doesnt close until until 18 months old....so until that is fused you always have a little room for correction. But Logan wore his from5-11 months old....and actually we saw the MOST improvement around the 9th month.

Logan's mama (45 down to 0 in 4th cast, 14 months old)

From: Boros <jayann_24@...>infantile scoliosis treatment Sent: Wed, September 1, 2010 10:20:18 PMSubject: RE: New here....

, The PT had talked to us about a helmet but the ped said 9 months was too late? What age did you start Logan in the helmet? I'm encouraged to hear he has learned how to crawl and walk in the cast. I hope has the same success! Ann Borosjayann_24@...

infantile scoliosis treatment From: amanda.medlin@...Date: Wed, 1 Sep 2010 05:43:50 -0700Subject: Re: New here....

Hey !

Logan was 9 months old when we started casting. He also had the torticollis ---so we went to PT for that...because he loved the right side so much..he dev a flat spot on his head...so he wore a helmet also...yes with the cast. He does not have the low muscle tone issue....but we decided to go with casting ASAP. He is 14 months now and doing great. He learned to crawl and walk IN the cast....honestly...it seems to have made him stronger..I swear he is the smallest strong man right now! lol! My husband says we are just weight training him and he is going to have the best 6 pack when he is done! If you have any questions --this group is AWESOME and has great advise...it seems like there is always one other mom or dad that has gone through the same situation that you can connect with.

Logan's mama (45 down to 0 in 4th cast, 14 months old.)

From: jamieboros <jayann_24@...>infantile scoliosis treatment Sent: Tue, August 31, 2010 8:59:31 PMSubject: New here....

Hi, my name is and I am a single Mom to who is just about a week shy of 9 months old. He has had a rough go overall and his situation seems to get more complex as time goes on rather then improving. He was a healthy full term baby with no issues during pregnancy. At 10 days old he started suffering from extreme reflux. He has had weight gain issues and now has not gained anything in 2 months and has dropped under the 5th percentile. He also has tortecollis and low muscle tone which we see a physical therapist for. The PT noticed at her last visit that his spine was curved. The pediatrician referred us to an orthopedic dr where we had x rays that were inconclusive. The next step is an MRI that will be coming up in the next few weeks. As there has been no official diagnosis yet, the pediatrician is wondering if there may be a genetic disease causing all of these issues? We talked today and he is referring us to a genectic

dr, a pediatric GI specialist and possibly a neuro muscular dr. is mentally sharp and a very happy boy but his gross motor is lacking. He is unable to sit up on his own and is not even close to crawling. He just started rolling over during his 6th month. We have been to the dr very frequently his whole life and are actually on pediatrician #3...and I am happy with him! yay! It's difficult to try to "recap" his situation but I'm wondering if based on this information if any families on here have any similar circumstances? I am fortunate to be close to Doernbecher Children's hospital as well as Shriners in Portland, Oregon but sometimes talking things over with parent's who have "been there" is more therapueutic and tend to have something that causes an "ah ha" moment with me for new questions to ask or things to try. After the spine MRI, the orthopedic dr is predicting casting, so I'm hoping to gain knowledge about

that as well as to know if any of your Children have a similar scenario as . Thanks for reading, I look forward to getting to know you all as we go through our journey's. ~

[Guest guest]

,

You're welcome! If you need to talk, just let me know.

Anesthesia is tough to get a grasp on, but Noelle has been though it something like 11 times now and she has never had any problems other than the normal grumpiness when she comes out of it. The MRI was tougher on us because they didn't use a mask to put her into twi-light sleep first and she felt the IV going in, of course. With the mask, it is a lot easier on them in my opinion.

And yes, LOVE my pediatrician now! I actually have his home number! lol - Noelle's mommy, 3 1/2 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and currently in cast 9reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: jamieboros <jayann_24@...>Subject: New here....infantile scoliosis treatment Date: Wednesday, September 1, 2010, 12:59 AM

Hi, my name is and I am a single Mom to who is just about a week shy of 9 months old. He has had a rough go overall and his situation seems to get more complex as time goes on rather then improving. He was a healthy full term baby with no issues during pregnancy. At 10 days old he started suffering from extreme reflux. He has had weight gain issues and now has not gained anything in 2 months and has dropped under the 5th percentile. He also has tortecollis and low muscle tone which we see a physical therapist for. The PT noticed at her last visit that his spine was curved. The pediatrician referred us to an orthopedic dr where we had x rays that were inconclusive. The next step is an MRI that will be coming up in the next few weeks. As there has been no official diagnosis yet, the pediatrician is wondering if there may be a genetic disease causing all of these issues? We talked today and he is referring us to a genectic

dr, a pediatric GI specialist and possibly a neuro muscular dr. is mentally sharp and a very happy boy but his gross motor is lacking. He is unable to sit up on his own and is not even close to crawling. He just started rolling over during his 6th month. We have been to the dr very frequently his whole life and are actually on pediatrician #3...and I am happy with him! yay! It's difficult to try to "recap" his situation but I'm wondering if based on this information if any families on here have any similar circumstances? I am fortunate to be close to Doernbecher Children's hospital as well as Shriners in Portland, Oregon but sometimes talking things over with parent's who have "been there" is more therapueutic and tend to have something that causes an "ah ha" moment with me for new questions to ask or things to try. After the spine MRI, the orthopedic dr is predicting casting, so I'm hoping to gain knowledge about

that as well as to know if any of your Children have a similar scenario as . Thanks for reading, I look forward to getting to know you all as we go through our journey's. ~

[Guest guest]

Hi all, I am from Idaho. I have been doing research for my grt.

granddaughter who has JRA, eczema and allergies. I came across Kefir grain. She

likes yogurt, so I was thinking she might like this and also thinking this might

help inside - out, so to speak.

Any input would be appreciated, Trin is just 3 years old and suffers greatly

with the eczema. Her RA Dr. says eczema is a symptom of her RA....

Thank you for letting me join.