Jump to content
RemedySpot.com
Sign in to follow this  
Guest guest

Introduction

Rate this topic

Recommended Posts

Guest guest

Wait, I thought this was a self help group :)Great to see all the new e-faces round here!There will be donuts and coffee after the meeting, right?Best to all,GarretSent from my iPhone

Hi..me name is . (doesn't that sound like the begining of some sort of self-help or AA meeting?)

I live in Oregon and have been drinking raw milk for a few months now and love it. There is a lovely farm here that sells eggs, milk, chickens, stock, cheese making things, etc. I am here to see what you all are doing and loving with the raw milk.

Share this post


Link to post
Share on other sites
Guest guest

Hi ! Where abouts in Oregon are you? Where is that farm??

Robin

Introduction

Hi..me name is . (doesn't that sound like the begining of some sort of self-help or AA meeting?)I live in Oregon and have been drinking raw milk for a few months now and love it. There is a lovely farm here that sells eggs, milk, chickens, stock, cheese making things, etc. I am here to see what you all are doing and loving with the raw milk.

Share this post


Link to post
Share on other sites
Guest guest

Hey there Robin...

I live in West Linn and work in Sherwood. The farm I go to is out in Yamhill

and is called Kookoolan Farms. Here is their website...

http://www.kookoolanfarms.com/ . They are wonderful.

>

> Hi ! Where abouts in Oregon are you? Where is that farm??

>

> Robin

>

>

> Introduction

>

>

>

>

>

> Hi..me name is . (doesn't that sound like the begining of some sort of

self-help or AA meeting?)

> I live in Oregon and have been drinking raw milk for a few months now and

love it. There is a lovely farm here that sells eggs, milk, chickens, stock,

cheese making things, etc. I am here to see what you all are doing and loving

with the raw milk.

>

Share this post


Link to post
Share on other sites
Guest guest

Hi Barbara & Welcome! It's good to have you on our journey!

________________________________

From: BlueRose <Gatorgranny@...>

weightloss

Sent: Friday, July 17, 2009 11:44:19 AM

Subject: Introduction

Hello Everyone, I am Barbara from Florida.

I am almost 61 yrs old.

I have struggled with overeating, undereating, compulsive eating, ever since I

was around 11yrs old.

That is when I started putting on weight. I have been on most every diet known,

starting with Mom putting me on the Adys candies to curb my appetite when I was

11.

I have lost a 100 pounds many times over to just go right back to eating again

and gaining it

right back.

I used to starve myself then binge eat, then starve myself again only to do it

all over again.

Things started taking on a different role when I joined OA (overeaters

anonymous) over 12 yrs ago. I went through all the steps and learned a lot, yet

the weight has not budged. I have

pretty much maintained the same weight give or take 5 pounds for the last 6 yrs.

Emotionally, and Spiritually the OA program has helped me. There was still

something missing. I got online and found IOWL and downloaded the podcasts to

my MP3 player.

I have been soaking each podcast up for the last 12 days. I have found a new

freedom

with food already. I have learned to take care of myself and I have been given

the desire to do so since listening and doing what suggested on the

podcasts. I have a lot more practicing to do and applying the suggestions from

IOWL but I feel like I am on my way to wellness and better health.

Thank you and everyone here I am grateful to have joined this support

group, and I look forward to hearing about everyone else's journey to wellness.

Barbara in Fl.

Share this post


Link to post
Share on other sites
Guest guest

Thank you Colleen. :o) Good to be here!

Hi Barbara & Welcome! It's good to have you on our journey!

________________________________

From: BlueRose <Gatorgranny@...>

weightloss

Sent: Friday, July 17, 2009 11:44:19 AM

Subject: Introduction

Hello Everyone, I am Barbara from Florida.

I am almost 61 yrs old.

I have struggled with overeating, undereating, compulsive eating, ever since I

was around 11yrs old.

That is when I started putting on weight. I have been on most every diet

known, starting with Mom putting me on the Adys candies to curb my appetite when

I was 11.

I have lost a 100 pounds many times over to just go right back to eating again

and gaining it

right back.

I used to starve myself then binge eat, then starve myself again only to do it

all over again.

Things started taking on a different role when I joined OA (overeaters

anonymous) over 12 yrs ago. I went through all the steps and learned a lot, yet

the weight has not budged. I have

pretty much maintained the same weight give or take 5 pounds for the last 6

yrs. Emotionally, and Spiritually the OA program has helped me. There was still

something missing. I got online and found IOWL and downloaded the podcasts to my

MP3 player.

I have been soaking each podcast up for the last 12 days. I have found a new

freedom

with food already. I have learned to take care of myself and I have been given

the desire to do so since listening and doing what suggested on the

podcasts. I have a lot more practicing to do and applying the suggestions from

IOWL but I feel like I am on my way to wellness and better health.

Thank you and everyone here I am grateful to have joined this support

group, and I look forward to hearing about everyone else's journey to wellness.

Barbara in Fl.

Share this post


Link to post
Share on other sites
Guest guest

Hi roro1568 - and everyone...

roro1568 I dont know if I can giv eyou any advice but I can say that I am in the

exact same place as you are. I never had to watch my weight as a younger person

and my weight gain didnt come until after I had kids. I have four children and

after the 3rd i had lost the weight (thru vigilant exercise and eating right)

and was loving my body and life, after my 4th child (she is 4 now) my body has

never been the same. I am 41 years old also. I am a binger and overeater also.

I do my eating during the day when my husband isnt home and my kids are at

school (so I hide it) and it has caught up to me. I am about 25 pounds

overweight and gaining and gaining.

I am hoping that my plan of listening to the podcasts while I exercise will push

me in the right direction. I started yesterday with walking on a treadmill

while listening to 2 podcasts. My resolve is to start with little steps 1.

listen to 2 podcasts per day - starting from #1 and 2. walk everyday until I

can get the resolve to exercise harder. The food overeating/compulsion Im

hoping I can tackle as I go.

I dont want to count points although I have figured that watching (counting)

calories might be part of the battle.

>

> Hi all! I just started listining to the podcasts a few weeks ago and I'm

loving it! I never stuggled with my weight when i was a teen - 103 pounds until

i got married at 24. Was able to eat anything i wanted and overindulged alot.

Now at 41 I'm a compulsive overeater and binger. I did weight watchers and

dropped 20 pounds - fell off the wagon - not 22 pounds heaver than i was when i

stated. Having a hard time staying on course. Don't want to count calories and

points. Trying to be more active. Any advise as i start this journey with you?

>

Share this post


Link to post
Share on other sites
Guest guest

Welcome, Dawn, and thanks for posting!  I too am a fitness instructor that goes up and down on the scale, always a struggle!  But everyone here is so encouraging and supportive, you're in the right place!   I look forward to reading your workout reviews!

Share this post


Link to post
Share on other sites
Guest guest

Welcome to the group Dawn!You've made a great choice by joining this group. Here you will not only find enabling DVD recommendations, you will also find support for exercising, healthy eating and weight loss.Where are you from? I live in Michigan. aka JenFrom: carrymemom <carrymemom@...>Subject: Introduction Date: Sunday, January 3, 2010, 11:15 PM

Hi, folks!

I have had the privilege of reading your inspiring posts for the last two weeks, and I wanted to take the opportunity to introduce myself here as I join the group.

I used to be an advanced exerciser, even taught classes. Got married, move to an area that I hated, had two precious children, and gained loads of weight in a seven year process. As a result of just not being able to take it anymore: shame, guilt, tired of being tired and unhealthy, I made a life change in July 2009. I began exercising again to ChaLean Extreme, TurboJam, and TurboKick classes at 24 Hour Fitness. I have been exercising at least 4-5 days a week and feel terrific. I have lost weight: 25 pounds, gained 10 pounds of muscle, dropped 4 sizes.

Though, I am ready to take it up a notch, because I still have a long journey ahead. I want 6 days/week of kicking it hard with my workouts--no excuses. My eating has changed in a lot of ways for the better, but I slip too often. Old habits of turning to food when I am bored or emotional. Through WW, I want the goal of staying within points on a daily basis, at 5-6 days of the week. I could use my extra points for a 'cheat' meal or two during the week.

I know I won't be perfect, and to some, I may have lofty goals, but I am just happy to be on the journey toward a new me. I am learning so much in the process, and that is the point anyway.

I look forward to getting to know you! I posted a photo of me with my two precious ones from 04/09.

Best,

Dawn

Share this post


Link to post
Share on other sites
Guest guest

Hi Dawn,Welcome to the group, and congrats on your weightloss!  I know how fabulous it feels to be going in the right direction!I look forward to reading more of your posts ;)Darcy

On Sun, Jan 3, 2010 at 10:16 PM, carrymemom <carrymemom@...> wrote:

 

Hi, folks!

I have had the privilege of reading your inspiring posts for the last two weeks, and I wanted to take the opportunity to introduce myself here as I join the group.

I used to be an advanced exerciser, even taught classes. Got married, move to an area that I hated, had two precious children, and gained loads of weight in a seven year process. As a result of just not being able to take it anymore: shame, guilt, tired of being tired and unhealthy, I made a life change in July 2009. I began exercising again to ChaLean Extreme, TurboJam, and TurboKick classes at 24 Hour Fitness. I have been exercising at least 4-5 days a week and feel terrific. I have lost weight: 25 pounds, gained 10 pounds of muscle, dropped 4 sizes.

Though, I am ready to take it up a notch, because I still have a long journey ahead. I want 6 days/week of kicking it hard with my workouts--no excuses. My eating has changed in a lot of ways for the better, but I slip too often. Old habits of turning to food when I am bored or emotional. Through WW, I want the goal of staying within points on a daily basis, at 5-6 days of the week. I could use my extra points for a 'cheat' meal or two during the week.

I know I won't be perfect, and to some, I may have lofty goals, but I am just happy to be on the journey toward a new me. I am learning so much in the process, and that is the point anyway.

I look forward to getting to know you! I posted a photo of me with my two precious ones from 04/09.

Best,

Dawn

Share this post


Link to post
Share on other sites
Guest guest

Welcome Dawn!I had a similar experience. I was really an athlete - competed in beach volleyball, biked long distance, taught spinning and was a personal training to pay for my PhD. I finished up my education and moved to an area where I was not happy and gained lots of weight (I didn't have kids so just me to blame!). I moved back to town I love dropped about 20 lbus and am currently trying to drop 20-30 more lbs. Right now I am recovering from hysterectomy so not exercising until end of month but learning from everyone here. Good luck.PS I LOVE turbo jam, turbo kick and chalean.... I hope when I can lift weights again to do Chalean- but for next 5 weeks can't lift... just walking.judy in DCFrom: carrymemom <carrymemom@...> Sent: Sun, January 3, 2010 11:15:55 PMSubject: Introduction

Hi, folks!

I have had the privilege of reading your inspiring posts for the last two weeks, and I wanted to take the opportunity to introduce myself here as I join the group.

I used to be an advanced exerciser, even taught classes. Got married, move to an area that I hated, had two precious children, and gained loads of weight in a seven year process. As a result of just not being able to take it anymore: shame, guilt, tired of being tired and unhealthy, I made a life change in July 2009. I began exercising again to ChaLean Extreme, TurboJam, and TurboKick classes at 24 Hour Fitness. I have been exercising at least 4-5 days a week and feel terrific. I have lost weight: 25 pounds, gained 10 pounds of muscle, dropped 4 sizes.

Though, I am ready to take it up a notch, because I still have a long journey ahead. I want 6 days/week of kicking it hard with my workouts--no excuses. My eating has changed in a lot of ways for the better, but I slip too often. Old habits of turning to food when I am bored or emotional. Through WW, I want the goal of staying within points on a daily basis, at 5-6 days of the week. I could use my extra points for a 'cheat' meal or two during the week.

I know I won't be perfect, and to some, I may have lofty goals, but I am just happy to be on the journey toward a new me. I am learning so much in the process, and that is the point anyway.

I look forward to getting to know you! I posted a photo of me with my two precious ones from 04/09.

Best,

Dawn

Share this post


Link to post
Share on other sites
Guest guest

Hi Dawn,Welcome, and congratulations for your achievements! WW is such a good program, and good for you on the exercise. Best of luck with your goals -- and it's great that perfection isn't one of them. :D I'll go check out the pics... 

On Sun, Jan 3, 2010 at 8:16 PM, carrymemom <carrymemom@...> wrote:

Hi, folks!

I have had the privilege of reading your inspiring posts for the last two weeks, and I wanted to take the opportunity to introduce myself here as I join the group.

I used to be an advanced exerciser, even taught classes.  Got married, move to an area that I hated, had two precious children, and gained loads of weight in a seven year process.  As a result of just not being able to take it anymore: shame, guilt, tired of being tired and unhealthy, I made a life change in July 2009.  I began exercising again to ChaLean Extreme, TurboJam, and TurboKick classes at 24 Hour Fitness.  I have been exercising at least 4-5 days a week and feel terrific.  I have lost weight: 25 pounds, gained 10 pounds of muscle, dropped 4 sizes.

Though, I am ready to take it up a notch, because I still have a long journey ahead.  I want 6 days/week of kicking it hard with my workouts--no excuses.  My eating has changed in a lot of ways for the better, but I slip too often.  Old habits of turning to food when I am bored or emotional.  Through WW, I want the goal of staying within points on a daily basis, at 5-6 days of the week.  I could use my extra points for a 'cheat' meal or two during the week.

I know I won't be perfect, and to some, I may have lofty goals, but I am just happy to be on the journey toward a new me.  I am learning so much in the process, and that is the point anyway.

I look forward to getting to know you!  I posted a photo of me with my two precious ones from 04/09.

Best,

Dawn

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

Share this post


Link to post
Share on other sites
Guest guest

Welcome to the group Dawn! I love that name! My best friend in middle school was

named Dawn.I always wonder what happened to her.

congratulations on your success thus far! I look forward to reading your posts!

a

>

> Hi, folks!

>

> I have had the privilege of reading your inspiring posts for the last two

weeks, and I wanted to take the opportunity to introduce myself here as I join

the group.

>

> I used to be an advanced exerciser, even taught classes. Got married, move to

an area that I hated, had two precious children, and gained loads of weight in a

seven year process. As a result of just not being able to take it anymore:

shame, guilt, tired of being tired and unhealthy, I made a life change in July

2009. I began exercising again to ChaLean Extreme, TurboJam, and TurboKick

classes at 24 Hour Fitness. I have been exercising at least 4-5 days a week and

feel terrific. I have lost weight: 25 pounds, gained 10 pounds of muscle,

dropped 4 sizes.

>

> Though, I am ready to take it up a notch, because I still have a long journey

ahead. I want 6 days/week of kicking it hard with my workouts--no excuses. My

eating has changed in a lot of ways for the better, but I slip too often. Old

habits of turning to food when I am bored or emotional. Through WW, I want the

goal of staying within points on a daily basis, at 5-6 days of the week. I

could use my extra points for a 'cheat' meal or two during the week.

>

> I know I won't be perfect, and to some, I may have lofty goals, but I am just

happy to be on the journey toward a new me. I am learning so much in the

process, and that is the point anyway.

>

> I look forward to getting to know you! I posted a photo of me with my two

precious ones from 04/09.

>

> Best,

> Dawn

>

Share this post


Link to post
Share on other sites
Guest guest

Thank you for the kind welcome, everyone! I am a exercise video addict, so you all are definitely not a help in that area! ;) I just purchased a couple a new Cathes because of the discussion here!

I am hitting my second round of CLX; almost through with the Burn phase, then hitting Push. I am doing TJ and Turbokick for cardio.

We live 15 minutes from Boulder, CO in Longmont. Hubby teaches at University of CO at Boulder. I was a middle school teacher prior to staying at home with the kiddos. We get the mountains everyday!

Have a great day, everyone!

Dawn

P.S. I am going to try a post a picture again. Wasn't able to do it last night--some webpage error.

From: <volleyjen0416@...> Sent: Sun, January 3, 2010 10:22:58 PMSubject: Re: Introduction

Welcome to the group Dawn!You've made a great choice by joining this group. Here you will not only find enabling DVD recommendations, you will also find support for exercising, healthy eating and weight loss.Where are you from? I live in Michigan. aka Jen

From: carrymemom <carrymemom (DOT) com>Subject: IntroductionDate: Sunday, January 3, 2010, 11:15 PM

Hi, folks!I have had the privilege of reading your inspiring posts for the last two weeks, and I wanted to take the opportunity to introduce myself here as I join the group.I used to be an advanced exerciser, even taught classes. Got married, move to an area that I hated, had two precious children, and gained loads of weight in a seven year process. As a result of just not being able to take it anymore: shame, guilt, tired of being tired and unhealthy, I made a life change in July 2009. I began exercising again to ChaLean Extreme, TurboJam, and TurboKick classes at 24 Hour Fitness. I have been exercising at least 4-5 days a week and feel terrific. I have lost weight: 25 pounds, gained 10 pounds of muscle, dropped 4 sizes.Though, I am ready to take it up a notch, because I still have a long journey ahead. I want 6 days/week of kicking it hard with my workouts--no excuses. My eating has changed in a lot of ways for the better,

but I slip too often. Old habits of turning to food when I am bored or emotional. Through WW, I want the goal of staying within points on a daily basis, at 5-6 days of the week. I could use my extra points for a 'cheat' meal or two during the week.I know I won't be perfect, and to some, I may have lofty goals, but I am just happy to be on the journey toward a new me. I am learning so much in the process, and that is the point anyway.I look forward to getting to know you! I posted a photo of me with my two precious ones from 04/09.Best,Dawn

Share this post


Link to post
Share on other sites
Guest guest

Welcome, Cindi. It's rare for a doctor to dx MBL defect. Are you at a Children's

hospital? OH?

There is another mom here whose kids have this. Her son was severe and had bone

marrow transplant in OH. She's very busy be maybe she'll chime in.

SCIG was a G-d send to us. kids who have established PIDs can not be cured by

ENT surgeries. So sorry your daughter had to go through this. They typically

need certain antimicrobial drugs/biodrugs or immune reconstitution. Glad she's

getting what she needs.

best wishes

Mom to cvider, 8

Sent on the Now Network™ from my Sprint® BlackBerry

Introduction

Hello to all!

My name is Cindi and am a mother to Allie " My little sinus princess " . I

also have two other children who are very normal health wise at least.

[:D]

Allie is 4 years old. She has always seemed to get sicker more than my

other kids but our doctors told us it was normal..some kids just get

sick more often...and I believed them and just kept giving her

antibiotic after antibiotic. Allie was first hospitalized at 7 weeks

with RSV and one week later had her first sinus infection. I asked our

doctor about a referral to ENT for two years..she kept saying she did

not feel it was necessary yet. Well at 2 and 1/2 Allie was in er again

with high fever and was dx with Strep again and ear and sinus

infection...at this point I learned to stop believing everything our

doctor was telling us. So I made an appt with a ENT on my own...he

immediately said we needed to try and take adenoids out and see if that

helps with infections. While she went under he discovered she also had

GERD which she was aspirating into her sinuses and lungs and she had

tracheomalcia. She had a surgery 1 month later to fix the

tracheomalcia...which was obstructing her airflow 70% and he thought

this and tx for the GERD would decrease the infections. Well 8 sinus

surgeries later and picc line for 3 months we finally ended up in our

current immunos office. We had seen two other immunos prior to this but

they said normal IGGs she is fine and will grow out of the chronic

sinusitis. Our current immuno started digging deeper and did more

tests....it was discovered she has Mannan Binding Lectin Deficiency and

also has low B cells(we are to recheck those in JuLy) The immunologist

puts us sheltered from the world(it felt that way at least) and put her

on prophylactic abxs. The problem was she was never able to get on the

prophylactic abxs more than a week before a new infection had blown up.

So in November of this year we started SCIG. Wow what a change....she

has her first sinus infection right now since we started the SCIG. Which

is so amazing for us! She has been dealing with chronic utis

although..(they feel they were there the whole time but were being

masked by the constant abxs) She was found to have reflux of both

kidneys but only level 1. Well just two weeks ago she had to be admitted

to the hospital for iv fluids and abxs for another kidney infection that

would not clear up. The urologist felt with all of her health issues

best to perform a deflux surgery to save kidneys from any further

damage(as of right now right kidney is smaller than left). So last week

she had that performed and seems good so far beside the cold we picked

up at hospital which is now a wonderful rainbow of colors. We go Friday

to see our immunologist who is interested in increasing her SCIG to

hopefully knock the utis out of the picture as well. Without the IDF's

help I would not have found our current immuno and know right questions

to ask. We are slowing getting back to as a normal life as we can have.

I am so excited to get to know all of you and about your wonderful

children.

Share this post


Link to post
Share on other sites
Guest guest

Welcome, Cindi. It's rare for a doctor to dx MBL defect. Are you at a Children's

hospital? OH?

There is another mom here whose kids have this. Her son was severe and had bone

marrow transplant in OH. She's very busy be maybe she'll chime in.

SCIG was a G-d send to us. kids who have established PIDs can not be cured by

ENT surgeries. So sorry your daughter had to go through this. They typically

need certain antimicrobial drugs/biodrugs or immune reconstitution. Glad she's

getting what she needs.

best wishes

Mom to cvider, 8

Sent on the Now Network™ from my Sprint® BlackBerry

Introduction

Hello to all!

My name is Cindi and am a mother to Allie " My little sinus princess " . I

also have two other children who are very normal health wise at least.

[:D]

Allie is 4 years old. She has always seemed to get sicker more than my

other kids but our doctors told us it was normal..some kids just get

sick more often...and I believed them and just kept giving her

antibiotic after antibiotic. Allie was first hospitalized at 7 weeks

with RSV and one week later had her first sinus infection. I asked our

doctor about a referral to ENT for two years..she kept saying she did

not feel it was necessary yet. Well at 2 and 1/2 Allie was in er again

with high fever and was dx with Strep again and ear and sinus

infection...at this point I learned to stop believing everything our

doctor was telling us. So I made an appt with a ENT on my own...he

immediately said we needed to try and take adenoids out and see if that

helps with infections. While she went under he discovered she also had

GERD which she was aspirating into her sinuses and lungs and she had

tracheomalcia. She had a surgery 1 month later to fix the

tracheomalcia...which was obstructing her airflow 70% and he thought

this and tx for the GERD would decrease the infections. Well 8 sinus

surgeries later and picc line for 3 months we finally ended up in our

current immunos office. We had seen two other immunos prior to this but

they said normal IGGs she is fine and will grow out of the chronic

sinusitis. Our current immuno started digging deeper and did more

tests....it was discovered she has Mannan Binding Lectin Deficiency and

also has low B cells(we are to recheck those in JuLy) The immunologist

puts us sheltered from the world(it felt that way at least) and put her

on prophylactic abxs. The problem was she was never able to get on the

prophylactic abxs more than a week before a new infection had blown up.

So in November of this year we started SCIG. Wow what a change....she

has her first sinus infection right now since we started the SCIG. Which

is so amazing for us! She has been dealing with chronic utis

although..(they feel they were there the whole time but were being

masked by the constant abxs) She was found to have reflux of both

kidneys but only level 1. Well just two weeks ago she had to be admitted

to the hospital for iv fluids and abxs for another kidney infection that

would not clear up. The urologist felt with all of her health issues

best to perform a deflux surgery to save kidneys from any further

damage(as of right now right kidney is smaller than left). So last week

she had that performed and seems good so far beside the cold we picked

up at hospital which is now a wonderful rainbow of colors. We go Friday

to see our immunologist who is interested in increasing her SCIG to

hopefully knock the utis out of the picture as well. Without the IDF's

help I would not have found our current immuno and know right questions

to ask. We are slowing getting back to as a normal life as we can have.

I am so excited to get to know all of you and about your wonderful

children.

Share this post


Link to post
Share on other sites
Guest guest

,

No we are in South Carolina, our immuno is in ton, prior to that she was

at Duke with Dr. Buckley. It is quite aggravating because nobody seems to know

much about MBL. All we really have is the ongoing research on it...which some

seems so scary. We were started on SCIG for a 6 month trial..and then it has

worked so well for us. I have only talked with two other mothers with this

deficiency and neither one is on IVIG/SCIG due to their immunologist saying it

is not an option???? Our immunologist has told me later down the road a MBL

transplant may be a possibility...they just don't know. Do you remember what the

other mothers name is so I can look thru all the archives for her messages? It

took us two immunologist and one ID doctor until we found a immunologist that

could find what was wrong.

>

> Welcome, Cindi. It's rare for a doctor to dx MBL defect. Are you at a

Children's hospital? OH?

>

> There is another mom here whose kids have this. Her son was severe and had

bone marrow transplant in OH. She's very busy be maybe she'll chime in.

>

> SCIG was a G-d send to us. kids who have established PIDs can not be cured by

ENT surgeries. So sorry your daughter had to go through this. They typically

need certain antimicrobial drugs/biodrugs or immune reconstitution. Glad she's

getting what she needs.

>

> best wishes

>

> Mom to cvider, 8

>

> Sent on the Now Network™ from my Sprint® BlackBerry

>

> Introduction

>

> Hello to all!

> My name is Cindi and am a mother to Allie " My little sinus princess " . I

> also have two other children who are very normal health wise at least.

> [:D]

>

> Allie is 4 years old. She has always seemed to get sicker more than my

> other kids but our doctors told us it was normal..some kids just get

> sick more often...and I believed them and just kept giving her

> antibiotic after antibiotic. Allie was first hospitalized at 7 weeks

> with RSV and one week later had her first sinus infection. I asked our

> doctor about a referral to ENT for two years..she kept saying she did

> not feel it was necessary yet. Well at 2 and 1/2 Allie was in er again

> with high fever and was dx with Strep again and ear and sinus

> infection...at this point I learned to stop believing everything our

> doctor was telling us. So I made an appt with a ENT on my own...he

> immediately said we needed to try and take adenoids out and see if that

> helps with infections. While she went under he discovered she also had

> GERD which she was aspirating into her sinuses and lungs and she had

> tracheomalcia. She had a surgery 1 month later to fix the

> tracheomalcia...which was obstructing her airflow 70% and he thought

> this and tx for the GERD would decrease the infections. Well 8 sinus

> surgeries later and picc line for 3 months we finally ended up in our

> current immunos office. We had seen two other immunos prior to this but

> they said normal IGGs she is fine and will grow out of the chronic

> sinusitis. Our current immuno started digging deeper and did more

> tests....it was discovered she has Mannan Binding Lectin Deficiency and

> also has low B cells(we are to recheck those in JuLy) The immunologist

> puts us sheltered from the world(it felt that way at least) and put her

> on prophylactic abxs. The problem was she was never able to get on the

> prophylactic abxs more than a week before a new infection had blown up.

> So in November of this year we started SCIG. Wow what a change....she

> has her first sinus infection right now since we started the SCIG. Which

> is so amazing for us! She has been dealing with chronic utis

> although..(they feel they were there the whole time but were being

> masked by the constant abxs) She was found to have reflux of both

> kidneys but only level 1. Well just two weeks ago she had to be admitted

> to the hospital for iv fluids and abxs for another kidney infection that

> would not clear up. The urologist felt with all of her health issues

> best to perform a deflux surgery to save kidneys from any further

> damage(as of right now right kidney is smaller than left). So last week

> she had that performed and seems good so far beside the cold we picked

> up at hospital which is now a wonderful rainbow of colors. We go Friday

> to see our immunologist who is interested in increasing her SCIG to

> hopefully knock the utis out of the picture as well. Without the IDF's

> help I would not have found our current immuno and know right questions

> to ask. We are slowing getting back to as a normal life as we can have.

> I am so excited to get to know all of you and about your wonderful

> children.

>

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

,

No we are in South Carolina, our immuno is in ton, prior to that she was

at Duke with Dr. Buckley. It is quite aggravating because nobody seems to know

much about MBL. All we really have is the ongoing research on it...which some

seems so scary. We were started on SCIG for a 6 month trial..and then it has

worked so well for us. I have only talked with two other mothers with this

deficiency and neither one is on IVIG/SCIG due to their immunologist saying it

is not an option???? Our immunologist has told me later down the road a MBL

transplant may be a possibility...they just don't know. Do you remember what the

other mothers name is so I can look thru all the archives for her messages? It

took us two immunologist and one ID doctor until we found a immunologist that

could find what was wrong.

>

> Welcome, Cindi. It's rare for a doctor to dx MBL defect. Are you at a

Children's hospital? OH?

>

> There is another mom here whose kids have this. Her son was severe and had

bone marrow transplant in OH. She's very busy be maybe she'll chime in.

>

> SCIG was a G-d send to us. kids who have established PIDs can not be cured by

ENT surgeries. So sorry your daughter had to go through this. They typically

need certain antimicrobial drugs/biodrugs or immune reconstitution. Glad she's

getting what she needs.

>

> best wishes

>

> Mom to cvider, 8

>

> Sent on the Now Network™ from my Sprint® BlackBerry

>

> Introduction

>

> Hello to all!

> My name is Cindi and am a mother to Allie " My little sinus princess " . I

> also have two other children who are very normal health wise at least.

> [:D]

>

> Allie is 4 years old. She has always seemed to get sicker more than my

> other kids but our doctors told us it was normal..some kids just get

> sick more often...and I believed them and just kept giving her

> antibiotic after antibiotic. Allie was first hospitalized at 7 weeks

> with RSV and one week later had her first sinus infection. I asked our

> doctor about a referral to ENT for two years..she kept saying she did

> not feel it was necessary yet. Well at 2 and 1/2 Allie was in er again

> with high fever and was dx with Strep again and ear and sinus

> infection...at this point I learned to stop believing everything our

> doctor was telling us. So I made an appt with a ENT on my own...he

> immediately said we needed to try and take adenoids out and see if that

> helps with infections. While she went under he discovered she also had

> GERD which she was aspirating into her sinuses and lungs and she had

> tracheomalcia. She had a surgery 1 month later to fix the

> tracheomalcia...which was obstructing her airflow 70% and he thought

> this and tx for the GERD would decrease the infections. Well 8 sinus

> surgeries later and picc line for 3 months we finally ended up in our

> current immunos office. We had seen two other immunos prior to this but

> they said normal IGGs she is fine and will grow out of the chronic

> sinusitis. Our current immuno started digging deeper and did more

> tests....it was discovered she has Mannan Binding Lectin Deficiency and

> also has low B cells(we are to recheck those in JuLy) The immunologist

> puts us sheltered from the world(it felt that way at least) and put her

> on prophylactic abxs. The problem was she was never able to get on the

> prophylactic abxs more than a week before a new infection had blown up.

> So in November of this year we started SCIG. Wow what a change....she

> has her first sinus infection right now since we started the SCIG. Which

> is so amazing for us! She has been dealing with chronic utis

> although..(they feel they were there the whole time but were being

> masked by the constant abxs) She was found to have reflux of both

> kidneys but only level 1. Well just two weeks ago she had to be admitted

> to the hospital for iv fluids and abxs for another kidney infection that

> would not clear up. The urologist felt with all of her health issues

> best to perform a deflux surgery to save kidneys from any further

> damage(as of right now right kidney is smaller than left). So last week

> she had that performed and seems good so far beside the cold we picked

> up at hospital which is now a wonderful rainbow of colors. We go Friday

> to see our immunologist who is interested in increasing her SCIG to

> hopefully knock the utis out of the picture as well. Without the IDF's

> help I would not have found our current immuno and know right questions

> to ask. We are slowing getting back to as a normal life as we can have.

> I am so excited to get to know all of you and about your wonderful

> children.

>

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

Welcome Sue! There does seem to be a lot of overlap in triggers for both autism

and CFS if you Google them. And yes the reluctance of the medical establishment

to consider either as symptoms of a wider toxin/allergy issue is beyond

frustrating!

Hope you find some useful info here, I always have

Steph

>

> Hi

>

> I've just joined this group and wanted to introduce myself. I have two

children with chronic health issues. My daughter (15) has recently been found

to have had glandular fever, following years of ME/CFS symptoms, and my son (11)

received a diagnosis of autism a year ago.

>

> Having children with not one, but two politically controversial medical

conditions, which took years to diagnose, I have become very interested in the

diagnostic process itself. The biggest obstacle to further progress to finding

the causes of complex symptoms, in my view, is the widespread assumption that

similar symptoms must indicate the same causes; that all people with CFS

symptoms must have the same condition (CFS), and all people with autistic

symptoms must have the same condition (autism).

>

> My daughter has responded very well to a dairy-free diet, and my son to

switching to goats' milk, so I am looking forward to reading about other

parents' experiences with dietary interventions.

>

> I am also interested in sensory factors in autism.

>

> Sue

>

Share this post


Link to post
Share on other sites
Guest guest

Welcome Sue! There does seem to be a lot of overlap in triggers for both autism

and CFS if you Google them. And yes the reluctance of the medical establishment

to consider either as symptoms of a wider toxin/allergy issue is beyond

frustrating!

Hope you find some useful info here, I always have

Steph

>

> Hi

>

> I've just joined this group and wanted to introduce myself. I have two

children with chronic health issues. My daughter (15) has recently been found

to have had glandular fever, following years of ME/CFS symptoms, and my son (11)

received a diagnosis of autism a year ago.

>

> Having children with not one, but two politically controversial medical

conditions, which took years to diagnose, I have become very interested in the

diagnostic process itself. The biggest obstacle to further progress to finding

the causes of complex symptoms, in my view, is the widespread assumption that

similar symptoms must indicate the same causes; that all people with CFS

symptoms must have the same condition (CFS), and all people with autistic

symptoms must have the same condition (autism).

>

> My daughter has responded very well to a dairy-free diet, and my son to

switching to goats' milk, so I am looking forward to reading about other

parents' experiences with dietary interventions.

>

> I am also interested in sensory factors in autism.

>

> Sue

>

Share this post


Link to post
Share on other sites
Guest guest

Hi Sue,

There are various diets in place on this forum! My son's on GAPS (a

version of SCD) which is well worth a look at imho and has made a big

difference for my son along with other therapies. You can read 'gut and

psychology syndrome' if you're interested by Natasha McBride,

Sara

Sue wrote:

>

> Hi

>

> I've just joined this group and wanted to introduce myself. I have two

> children with chronic health issues. My daughter (15) has recently

> been found to have had glandular fever, following years of ME/CFS

> symptoms, and my son (11) received a diagnosis of autism a year ago.

>

> Having children with not one, but two politically controversial

> medical conditions, which took years to diagnose, I have become very

> interested in the diagnostic process itself. The biggest obstacle to

> further progress to finding the causes of complex symptoms, in my

> view, is the widespread assumption that similar symptoms must indicate

> the same causes; that all people with CFS symptoms must have the same

> condition (CFS), and all people with autistic symptoms must have the

> same condition (autism).

>

> My daughter has responded very well to a dairy-free diet, and my son

> to switching to goats' milk, so I am looking forward to reading about

> other parents' experiences with dietary interventions.

>

> I am also interested in sensory factors in autism.

>

> Sue

>

>

Share this post


Link to post
Share on other sites
Guest guest

Hi Sue,

There are various diets in place on this forum! My son's on GAPS (a

version of SCD) which is well worth a look at imho and has made a big

difference for my son along with other therapies. You can read 'gut and

psychology syndrome' if you're interested by Natasha McBride,

Sara

Sue wrote:

>

> Hi

>

> I've just joined this group and wanted to introduce myself. I have two

> children with chronic health issues. My daughter (15) has recently

> been found to have had glandular fever, following years of ME/CFS

> symptoms, and my son (11) received a diagnosis of autism a year ago.

>

> Having children with not one, but two politically controversial

> medical conditions, which took years to diagnose, I have become very

> interested in the diagnostic process itself. The biggest obstacle to

> further progress to finding the causes of complex symptoms, in my

> view, is the widespread assumption that similar symptoms must indicate

> the same causes; that all people with CFS symptoms must have the same

> condition (CFS), and all people with autistic symptoms must have the

> same condition (autism).

>

> My daughter has responded very well to a dairy-free diet, and my son

> to switching to goats' milk, so I am looking forward to reading about

> other parents' experiences with dietary interventions.

>

> I am also interested in sensory factors in autism.

>

> Sue

>

>

Share this post


Link to post
Share on other sites
Guest guest

On 6 February 2010 09:55, <mark.grabiec@...> wrote:

>

> Welcome Sue!  There does seem to be a lot of overlap in triggers for both

autism and CFS if you Google them. And yes the reluctance of the medical

establishment to consider either as symptoms of a wider toxin/allergy issue is

beyond frustrating!

>

> Hope you find some useful info here, I always have

Welcome, colorimeter specs prevented the fatigue part of my ME from

coming back. Chelation meant i could do without my specs permanently.

--

is

Share this post


Link to post
Share on other sites
Guest guest

On 6 February 2010 09:55, <mark.grabiec@...> wrote:

>

> Welcome Sue!  There does seem to be a lot of overlap in triggers for both

autism and CFS if you Google them. And yes the reluctance of the medical

establishment to consider either as symptoms of a wider toxin/allergy issue is

beyond frustrating!

>

> Hope you find some useful info here, I always have

Welcome, colorimeter specs prevented the fatigue part of my ME from

coming back. Chelation meant i could do without my specs permanently.

--

is

Share this post


Link to post
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
Sign in to follow this  

×
×
  • Create New...