Frustrated!

[Guest guest]

You need to stop weighing yourself so much. After free meals or a free day, your

weight's going to be higher, due to sodium and normal flucuations. Don't worry

about it. Follow the program and the pounds and inches will come off and you'll

build muscle!

jenniferlpesce wrote: Hi all- I just joined

today- I was happy to find this group. I

started BFL 2 1/2 weeks ago. I lost nothing the first week and then

suddenly dropped about 4 lbs. last week (I fluctuate a LOT). Now,

after the weekend, I am back up to my original weight from when I

began!!! I am following this thing- truly! Ok, I did split my free

day up between Fri and Sat night instead of all day on Sat like I

should have. Then I had won-ton soup last night with broccoli and

chicken (and a scoop of chocolate icecream later!!). So, I can not

exactly say that I have not cheated, but I would consider those to be

minor when the rest of the time has been totally strict- I didn't even

use my free day the first week. Anyway, I am a yo-yo dieter and want

to get on this program. I am only about 15 lbs over weight but I want

to make this my way of life and quit with the yo-yo. I used to be a

big weight watchers follower- I would follow it strictly for a few

weeks to kick start and drop 5 lbs real QUICK! Not the case with

BFL! I know lbs. only equal a number, but my clothes aren't getting

lose either. Anybody else experience this when they began...?

Thanks

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

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

Ok you are still dieting sounds like it from your post. I began BFL

almost 2 years ago and had been a yo yoer since my first diet at age 13

and I am going to be 40 this year. You need to give it 100% of your

effort for 12 weeks and you will absolutely see amazing results I

guarantee you this. I can tell you that muscle is more compact but you

weigh more with muscle. The benefit is you can fit into a size smaller

or sometimes 2 size smaller clothes then you could without the muscle.

Remember nobody but you sees the number on the scale everyone else just

sees your body and muscle provides a beautiful illusion of fitness and

makes you look skinnier. Who cares what the scale says.

Michele T.

[Guest guest]

ITA - don't weigh yourself so much.

I also came to BFL from WW. WW is great, I lost 20 pounds on it and

it was my first step - I was not ready then for BFL. But you're

going to need to break out of the WW mentality. The only shortfall

I see with WW really is the big number goal. That's the root of all

yo-yo'ing, IMO. It's so easy, it's human nature, when you work so

hard to see a number on a scale to get there and then go " woo-hoo, I

can EAT again! " WW talks a lot about it being a lifestyle and maybe

some people can make it so - but going on and off of it because

you're gaining and losing the same weight over and over again isn't

my idea of a " lifestyle change " . The whole program being structured

around a number on the scale, I think, actually prohibits the

changes that we have to make in our attitudes and thought patterns

that are necessary for REAL change.

Although WW is a wonderful, relatively healthy diet, it's still a

diet. This is not. Numbers are SOOOO important in WW - the only

really important numbers in BFL are the ones on the weights you're

lifting! Of course that's exaggerating - but not really. I still

weigh myself once/week but NEVER more. And I'm way more interested

in my measurements and what I see happening over time with my body

and with my brain! The way I think about food, about my body (my

weight and more importantly my health), and the way I think about

myself has changed completely!

Focus on developing a healthy body and lifestyle and the scale will

go down on it's own. And if you stay focused, it'll stay down.

Hi all- I just

joined today- I was happy to find this group. I

> started BFL 2 1/2 weeks ago. I lost nothing the first week and

then

> suddenly dropped about 4 lbs. last week (I fluctuate a LOT). Now,

> after the weekend, I am back up to my original weight from when I

> began!!! I am following this thing- truly! Ok, I did split my free

> day up between Fri and Sat night instead of all day on Sat like I

> should have. Then I had won-ton soup last night with broccoli and

> chicken (and a scoop of chocolate icecream later!!). So, I can not

> exactly say that I have not cheated, but I would consider those to

be

> minor when the rest of the time has been totally strict- I didn't

even

> use my free day the first week. Anyway, I am a yo-yo dieter and

want

> to get on this program. I am only about 15 lbs over weight but I

want

> to make this my way of life and quit with the yo-yo. I used to be

a

> big weight watchers follower- I would follow it strictly for a few

> weeks to kick start and drop 5 lbs real QUICK! Not the case with

> BFL! I know lbs. only equal a number, but my clothes aren't

getting

> lose either. Anybody else experience this when they began...?

> Thanks

>

>

>

>

>

>

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

> Talk is cheap. Use Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

>

[Guest guest]

If at all possible, weigh yourself one day a week, the morning of free

day, before you've had anything to eat or drink. That way every time

you step on the scale you have a whole week of clean eating behind

you. Weighing yourself only 2 days after free day, and 1 day after

wonton soup and chocolate ice cream won't do anything but make you

crazy. You basically had 3 days of cheating and then got on the scale.

Of course it will be up a little. Weigh yourself after six days of

eating clean and you'll be a lot happier with the results. What you're

looking at now is just water weight from the sodium and carbs.

Here are a couple of articles that might help you.

Why the Scale Lies

http://www.skwigg.com/id12.html

Do You Want to Lean Out or Swell Up?

http://www.skwigg.com/id55.html

Make sure you're using something besides scale weight to track your

progress - tape measurements, body fat percentage, photos, a tight

pair of jeans. And make sure that the majority of your goals are based

on things you can totally 100% control, like doing all your workouts,

drinking all your water, not missing meals, regularly increasing the

weights you lift, or improving your cardio speed or time. Those are

solid goals, and if you meet those lifestyle/program goals, you WILL

get lean. But if your goals are numbers based, like " I will lose 2

pounds a week " , those are things you have very little control over.

They create a lot of drama but not a lot of progress.

> Hi all- I just joined today- I was happy to find this group. I

> started BFL 2 1/2 weeks ago. I lost nothing the first week and then

> suddenly dropped about 4 lbs. last week (I fluctuate a LOT). Now,

> after the weekend, I am back up to my original weight from when I

> began!!! I am following this thing- truly! Ok, I did split my free

> day up between Fri and Sat night instead of all day on Sat like I

> should have. Then I had won-ton soup last night with broccoli and

> chicken (and a scoop of chocolate icecream later!!). So, I can not

> exactly say that I have not cheated, but I would consider those to be

> minor when the rest of the time has been totally strict- I didn't even

> use my free day the first week. Anyway, I am a yo-yo dieter and want

> to get on this program. I am only about 15 lbs over weight but I want

> to make this my way of life and quit with the yo-yo. I used to be a

> big weight watchers follower- I would follow it strictly for a few

> weeks to kick start and drop 5 lbs real QUICK! Not the case with

> BFL! I know lbs. only equal a number, but my clothes aren't getting

> lose either. Anybody else experience this when they began...?

> Thanks

[Guest guest]

I also did BFL after WW. I totally think WW can be a great starting

point but a girl I work with goes to WW and she got to her target

weight but couldn't get beyond a certain weight. She was doing a lot

of body pump classes and weights and when her weight crept back up a

bit the leader at WW asked her what she was doing and she explained

that was following her points but doing all this exercise. And can

you believe what the leader said?!?! She told her to stop exercising

because she wouldn't lose weight if she kept on running and doing

weights! I couldn't believe it when she told me this! lol

WW leader.. " Well, if you want to lose weight then you better stop

exercising! "

Yes why don't you keep your fat, lose your muscle and the scale will

start moving again! Crazy!

So don't worry about the scale, it's only a teeny part of the story!

Body for life is the best!!

xxx

- In , Michele Templeman

wrote:

>

> Ok you are still dieting sounds like it from your post. I began BFL

> almost 2 years ago and had been a yo yoer since my first diet at

age 13

> and I am going to be 40 this year. You need to give it 100% of your

> effort for 12 weeks and you will absolutely see amazing results I

> guarantee you this. I can tell you that muscle is more compact but

you

> weigh more with muscle. The benefit is you can fit into a size

smaller

> or sometimes 2 size smaller clothes then you could without the

muscle.

> Remember nobody but you sees the number on the scale everyone else

just

> sees your body and muscle provides a beautiful illusion of fitness

and

> makes you look skinnier. Who cares what the scale says.

> Michele T.

>

>

[Guest guest]

Thanks, ! You are right...no matter what the case, I am much better off

with BFL. I am eating so much healthier right now than I ever did on WW. I

loved WW so much b/c I could still eat crap...that is what this really boils

down to...it takes a while to get out of the habit of eating ice cream every

night (which I still did on WW)! It is hard I don't even have much more

than 15lbs to lose...I just want to be fit and healthy. Thanks for the

encouraging words!

Eve wrote:

I also did BFL after WW. I totally think WW can be a great starting

point but a girl I work with goes to WW and she got to her target

weight but couldn't get beyond a certain weight. She was doing a lot

of body pump classes and weights and when her weight crept back up a

bit the leader at WW asked her what she was doing and she explained

that was following her points but doing all this exercise. And can

you believe what the leader said?!?! She told her to stop exercising

because she wouldn't lose weight if she kept on running and doing

weights! I couldn't believe it when she told me this! lol

WW leader.. " Well, if you want to lose weight then you better stop

exercising! "

Yes why don't you keep your fat, lose your muscle and the scale will

start moving again! Crazy!

So don't worry about the scale, it's only a teeny part of the story!

Body for life is the best!!

xxx

- In , Michele Templeman

wrote:

>

> Ok you are still dieting sounds like it from your post. I began BFL

> almost 2 years ago and had been a yo yoer since my first diet at

age 13

> and I am going to be 40 this year. You need to give it 100% of your

> effort for 12 weeks and you will absolutely see amazing results I

> guarantee you this. I can tell you that muscle is more compact but

you

> weigh more with muscle. The benefit is you can fit into a size

smaller

> or sometimes 2 size smaller clothes then you could without the

muscle.

> Remember nobody but you sees the number on the scale everyone else

just

> sees your body and muscle provides a beautiful illusion of fitness

and

> makes you look skinnier. Who cares what the scale says.

> Michele T.

>

>

[Guest guest]

In my world, there is nothing wrong with a little lowfat ice cream every night!

To each his own re:WW and BFL. I actually had to go back on WW core to get

over my obsessive restrictive behavior with BFL. Neither programs says to do

this or that, they just provide us a framework for living. We're crafty people

and we come up with ways to do what makes us happy. For me, it's all about

balance. I want to get lean, maintain leanness but still enjoy those few food

items that give me pleasure. And some days I don't want to focus that much on

food at all.

And, if you read the Eating for Life book there are plenty of things in those

recipes that I wouldn't have eaten normally. There's even an ice cream recipe,

so you could have ice cream every night on BFL too!

Take care, Jami

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

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

Do you keep a record of his illnesses? Record everything to show how often and

what he's getting sick with. They don't just go by the numbers but by the

clinical picture and if he's constantly sick with just mildly low numbers it

sounds like he still needs the IVIG. How long as he been GF? You probably need

to be giving him sublingual B12 to help with the iron absorption which is a very

common issue in celiac and the low iron itself can be contributing to the

frequent illness. My dd had severe anemia as a toddler and we had to use a

liquid iron (Innovative brand, I can only find it online anymore) that was

designed specifically for people with malabsorption issues and it was awesome,

it rose my dd's iron from 8-10 in 2 weeks and she wasn't even taking a full

dose. It also didn't cause the tummy or constipation issues many iron products

cause.

Frustrated!

> Hi All,

>

> It has been a while since I was here, but I need some advice.

>

> My son Jordan is 2 years old and has low IGG (specifically IGG2), IGA & IGM.

He also is anemic and has Celiacs Disease. Since I last emailed we thought we

had gotten good news, but I am finding out that it is really just more

frustrating.

>

> Basically, our local Immunologist hadn't treated a child as young as Jordan

before and wanted to start him on IVIG, but before doing so, he suggested a trip

to a Pediatric Immunologist. We were referred to UCSF's Dr. Wara. We were

really impressed with her. She really put our nerves at ease and basically told

us that Jordan's numbers were not that bad. She expects that over the next few

years they will improve and therefore decided to do nothing but retest him in 1

year. Our pediatrician also agreed that his numbers weren't that bad and that

we will work with her to get him " supported " (she is a western trained MD but

practices mostly holistic med). I have been doing all she advised and also

giving him donated breast milk to help.

>

> What I am struggling with is when Jordan gets sick, it is worse than the rest

of us and quite often, but he doesn't end up in the hospital. However, the poor

kid is ALWAYS sick, with a fever, croup, diarrhea and ear infections. Over the

last three months he has been sick more than healthy. He has become very clingy

and attached to me and it is completely wearing me out. I was never really

that afraid of germs before, but now I think about it all the time. Where ever

we go, I worry about what is he going to pick up.

>

> I feel like because he was " boring " to the doctors he is suffering more than

he needs too. It so far hasn't affected his development, but I can tell that is

starting to affect his trust and security levels.

>

> Any recommendation would be much appreciated. Does anyone do the treatments

on their kids like this. Would we really see an improvement? Would it cause

more trauma to him then necessary?

>

> sorry for the long email and thanks in advance for your help

>

>

>

>

>

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

>

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

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

responsibility of the poster and should not be taken as professional advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

/messages

[Guest guest]

Do you keep a record of his illnesses? Record everything to show how often and

what he's getting sick with. They don't just go by the numbers but by the

clinical picture and if he's constantly sick with just mildly low numbers it

sounds like he still needs the IVIG. How long as he been GF? You probably need

to be giving him sublingual B12 to help with the iron absorption which is a very

common issue in celiac and the low iron itself can be contributing to the

frequent illness. My dd had severe anemia as a toddler and we had to use a

liquid iron (Innovative brand, I can only find it online anymore) that was

designed specifically for people with malabsorption issues and it was awesome,

it rose my dd's iron from 8-10 in 2 weeks and she wasn't even taking a full

dose. It also didn't cause the tummy or constipation issues many iron products

cause.

Frustrated!

> Hi All,

>

> It has been a while since I was here, but I need some advice.

>

> My son Jordan is 2 years old and has low IGG (specifically IGG2), IGA & IGM.

He also is anemic and has Celiacs Disease. Since I last emailed we thought we

had gotten good news, but I am finding out that it is really just more

frustrating.

>

> Basically, our local Immunologist hadn't treated a child as young as Jordan

before and wanted to start him on IVIG, but before doing so, he suggested a trip

to a Pediatric Immunologist. We were referred to UCSF's Dr. Wara. We were

really impressed with her. She really put our nerves at ease and basically told

us that Jordan's numbers were not that bad. She expects that over the next few

years they will improve and therefore decided to do nothing but retest him in 1

year. Our pediatrician also agreed that his numbers weren't that bad and that

we will work with her to get him " supported " (she is a western trained MD but

practices mostly holistic med). I have been doing all she advised and also

giving him donated breast milk to help.

>

> What I am struggling with is when Jordan gets sick, it is worse than the rest

of us and quite often, but he doesn't end up in the hospital. However, the poor

kid is ALWAYS sick, with a fever, croup, diarrhea and ear infections. Over the

last three months he has been sick more than healthy. He has become very clingy

and attached to me and it is completely wearing me out. I was never really

that afraid of germs before, but now I think about it all the time. Where ever

we go, I worry about what is he going to pick up.

>

> I feel like because he was " boring " to the doctors he is suffering more than

he needs too. It so far hasn't affected his development, but I can tell that is

starting to affect his trust and security levels.

>

> Any recommendation would be much appreciated. Does anyone do the treatments

on their kids like this. Would we really see an improvement? Would it cause

more trauma to him then necessary?

>

> sorry for the long email and thanks in advance for your help

>

>

>

>

>

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

>

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

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

responsibility of the poster and should not be taken as professional advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

/messages

[Guest guest]

Hi I have a son Lucas who is now 13 and his toddler years his situation was very

similar.r sons. He had LOTS of bowel issues ( bloody stools, FTT, eosinophilic

gastroenteritis.) as well as chronic infections one after another.  I too was

concerned about quality of life and yes it does effect them and eventually their

development. We started IVIg when he was 3 but looking back I wish we had

sooner.  My son had frequent tantrums along the way due to in my opinion feeling

sick all the time. I would consider getting a second opinion as well as even

going back to this person and sharing the level of infections he is having. I

would also document them, his responses to his illnesses, This is such a tough

time with these kids when you do not want to add more pain through infusions and

yet you want them to be better. My son did WAYYYYYY better with the infusions

than I expected and actually now with Sub Q it is not even near as traumatic as

I had expected. 

He became a normal little boy after about 6 months and he began feeling better.

The important thing is to protect their organs ( lungs gut etc )so that he will

have healthy ones for the rest of his life.   This is a great place to learn

more about others experiences. There are a great # of wise people on this site.

Bless you in your journey.

BARBIE  

From: <taw1492@...>

Subject: Frustrated!

Date: Monday, October 5, 2009, 10:46 AM

 

Hi All,

It has been a while since I was here, but I need some advice.

My son Jordan is 2 years old and has low IGG (specifically IGG2), IGA & IGM. He

also is anemic and has Celiacs Disease. Since I last emailed we thought we had

gotten good news, but I am finding out that it is really just more frustrating.

Basically, our local Immunologist hadn't treated a child as young as Jordan

before and wanted to start him on IVIG, but before doing so, he suggested a trip

to a Pediatric Immunologist. We were referred to UCSF's Dr. Wara. We were

really impressed with her. She really put our nerves at ease and basically told

us that Jordan's numbers were not that bad. She expects that over the next few

years they will improve and therefore decided to do nothing but retest him in 1

year. Our pediatrician also agreed that his numbers weren't that bad and that

we will work with her to get him " supported " (she is a western trained MD but

practices mostly holistic med). I have been doing all she advised and also

giving him donated breast milk to help.

What I am struggling with is when Jordan gets sick, it is worse than the rest of

us and quite often, but he doesn't end up in the hospital. However, the poor

kid is ALWAYS sick, with a fever, croup, diarrhea and ear infections. Over the

last three months he has been sick more than healthy. He has become very clingy

and attached to me and it is completely wearing me out. I was never really

that afraid of germs before, but now I think about it all the time. Where ever

we go, I worry about what is he going to pick up.

I feel like because he was " boring " to the doctors he is suffering more than he

needs too. It so far hasn't affected his development, but I can tell that is

starting to affect his trust and security levels.

Any recommendation would be much appreciated. Does anyone do the treatments on

their kids like this. Would we really see an improvement? Would it cause more

trauma to him then necessary?

sorry for the long email and thanks in advance for your help

[Guest guest]

,

My son is almost 6 and his overall IgG number is slightly within " normal " range.

We are faced with the same issues you are demonstrating right now. He has only

been on antibiotics twice since January, but this is not the norm. He has never

had to be hospitalized, but always seems to be sick. This winter might be a

different story as many flu symptoms are tossed back and forth among these

little guys.

The dr's are definitely on the fence as to wether or not to start IVIG. They

have of course seen worse, but have also seen better. Personally, I'm still not

convinced the risks outweigh the benefits--yet. Like you, we will retest him

every year an hope for the best.

I am absolutely the paranoid mom when it comes to germs as well. I feel like I

am exhausting myself every moment of everyday trying to keep the kids healthy.

Each time he coughs or sneezes, my heart drops---I hate living like this and

pray it will all get better with time.

- Pavlu

Mom to & Payton

________________________________

From: <taw1492@...>

Sent: Mon, October 5, 2009 10:46:56 AM

Subject: Frustrated!

Hi All,

It has been a while since I was here, but I need some advice.

My son Jordan is 2 years old and has low IGG (specifically IGG2), IGA & IGM. He

also is anemic and has Celiacs Disease. Since I last emailed we thought we had

gotten good news, but I am finding out that it is really just more frustrating.

Basically, our local Immunologist hadn't treated a child as young as Jordan

before and wanted to start him on IVIG, but before doing so, he suggested a trip

to a Pediatric Immunologist. We were referred to UCSF's Dr. Wara. We were

really impressed with her. She really put our nerves at ease and basically told

us that Jordan's numbers were not that bad. She expects that over the next few

years they will improve and therefore decided to do nothing but retest him in 1

year. Our pediatrician also agreed that his numbers weren't that bad and that

we will work with her to get him " supported " (she is a western trained MD but

practices mostly holistic med). I have been doing all she advised and also

giving him donated breast milk to help.

What I am struggling with is when Jordan gets sick, it is worse than the rest of

us and quite often, but he doesn't end up in the hospital. However, the poor

kid is ALWAYS sick, with a fever, croup, diarrhea and ear infections. Over the

last three months he has been sick more than healthy. He has become very clingy

and attached to me and it is completely wearing me out. I was never really

that afraid of germs before, but now I think about it all the time. Where ever

we go, I worry about what is he going to pick up.

I feel like because he was " boring " to the doctors he is suffering more than he

needs too. It so far hasn't affected his development, but I can tell that is

starting to affect his trust and security levels.

Any recommendation would be much appreciated. Does anyone do the treatments on

their kids like this. Would we really see an improvement? Would it cause more

trauma to him then necessary?

sorry for the long email and thanks in advance for your help

[Guest guest]

,

My son is almost 6 and his overall IgG number is slightly within " normal " range.

We are faced with the same issues you are demonstrating right now. He has only

been on antibiotics twice since January, but this is not the norm. He has never

had to be hospitalized, but always seems to be sick. This winter might be a

different story as many flu symptoms are tossed back and forth among these

little guys.

The dr's are definitely on the fence as to wether or not to start IVIG. They

have of course seen worse, but have also seen better. Personally, I'm still not

convinced the risks outweigh the benefits--yet. Like you, we will retest him

every year an hope for the best.

I am absolutely the paranoid mom when it comes to germs as well. I feel like I

am exhausting myself every moment of everyday trying to keep the kids healthy.

Each time he coughs or sneezes, my heart drops---I hate living like this and

pray it will all get better with time.

- Pavlu

Mom to & Payton

________________________________

From: <taw1492@...>

Sent: Mon, October 5, 2009 10:46:56 AM

Subject: Frustrated!

Hi All,

It has been a while since I was here, but I need some advice.

My son Jordan is 2 years old and has low IGG (specifically IGG2), IGA & IGM. He

also is anemic and has Celiacs Disease. Since I last emailed we thought we had

gotten good news, but I am finding out that it is really just more frustrating.

Basically, our local Immunologist hadn't treated a child as young as Jordan

before and wanted to start him on IVIG, but before doing so, he suggested a trip

to a Pediatric Immunologist. We were referred to UCSF's Dr. Wara. We were

really impressed with her. She really put our nerves at ease and basically told

us that Jordan's numbers were not that bad. She expects that over the next few

years they will improve and therefore decided to do nothing but retest him in 1

year. Our pediatrician also agreed that his numbers weren't that bad and that

we will work with her to get him " supported " (she is a western trained MD but

practices mostly holistic med). I have been doing all she advised and also

giving him donated breast milk to help.

What I am struggling with is when Jordan gets sick, it is worse than the rest of

us and quite often, but he doesn't end up in the hospital. However, the poor

kid is ALWAYS sick, with a fever, croup, diarrhea and ear infections. Over the

last three months he has been sick more than healthy. He has become very clingy

and attached to me and it is completely wearing me out. I was never really

that afraid of germs before, but now I think about it all the time. Where ever

we go, I worry about what is he going to pick up.

I feel like because he was " boring " to the doctors he is suffering more than he

needs too. It so far hasn't affected his development, but I can tell that is

starting to affect his trust and security levels.

Any recommendation would be much appreciated. Does anyone do the treatments on

their kids like this. Would we really see an improvement? Would it cause more

trauma to him then necessary?

sorry for the long email and thanks in advance for your help

[Guest guest]

Thanks for the suggestions. I am glad to see that I am not off base by being

concerned. I think today I am going to call Dr. Wara and push a little more. I

just don't think Jordan should have to live this way. (nor should we!). Anyone

have any suggestions about Stanford if I do go for a second opinion?

>

> ,

> My son is almost 6 and his overall IgG number is slightly within " normal "

range.

> We are faced with the same issues you are demonstrating right now. He has

only been on antibiotics twice since January, but this is not the norm. He has

never had to be hospitalized, but always seems to be sick. This winter might be

a different story as many flu symptoms are tossed back and forth among these

little guys.

> The dr's are definitely on the fence as to wether or not to start IVIG. They

have of course seen worse, but have also seen better. Personally, I'm still not

convinced the risks outweigh the benefits--yet. Like you, we will retest him

every year an hope for the best.

> I am absolutely the paranoid mom when it comes to germs as well. I feel like

I am exhausting myself every moment of everyday trying to keep the kids healthy.

Each time he coughs or sneezes, my heart drops---I hate living like this and

pray it will all get better with time.

>

> - Pavlu

> Mom to & Payton

>

>

>

> ________________________________

> From: <taw1492@...>

>

> Sent: Mon, October 5, 2009 10:46:56 AM

> Subject: Frustrated!

>

>

> Hi All,

>

> It has been a while since I was here, but I need some advice.

>

> My son Jordan is 2 years old and has low IGG (specifically IGG2), IGA & IGM.

He also is anemic and has Celiacs Disease. Since I last emailed we thought we

had gotten good news, but I am finding out that it is really just more

frustrating.

>

> Basically, our local Immunologist hadn't treated a child as young as Jordan

before and wanted to start him on IVIG, but before doing so, he suggested a trip

to a Pediatric Immunologist. We were referred to UCSF's Dr. Wara. We were

really impressed with her. She really put our nerves at ease and basically told

us that Jordan's numbers were not that bad. She expects that over the next few

years they will improve and therefore decided to do nothing but retest him in 1

year. Our pediatrician also agreed that his numbers weren't that bad and that

we will work with her to get him " supported " (she is a western trained MD but

practices mostly holistic med). I have been doing all she advised and also

giving him donated breast milk to help.

>

> What I am struggling with is when Jordan gets sick, it is worse than the rest

of us and quite often, but he doesn't end up in the hospital. However, the poor

kid is ALWAYS sick, with a fever, croup, diarrhea and ear infections. Over the

last three months he has been sick more than healthy. He has become very clingy

and attached to me and it is completely wearing me out. I was never really

that afraid of germs before, but now I think about it all the time. Where ever

we go, I worry about what is he going to pick up.

>

> I feel like because he was " boring " to the doctors he is suffering more than

he needs too. It so far hasn't affected his development, but I can tell that is

starting to affect his trust and security levels.

>

> Any recommendation would be much appreciated. Does anyone do the treatments

on their kids like this. Would we really see an improvement? Would it cause

more trauma to him then necessary?

>

> sorry for the long email and thanks in advance for your help

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi.

Personally I did not have very good luck at Stanford.

We saw saw 2 ents a pulmonilogusy and an ID.

They all said she was just snotty and would out

Grow it soon. Thankfully her pedi and allergist/immunologist

Wouldn't let it go and were the ones who decided to start subq.

I can give you our immunologist. But were in the south bay.

Hope you can get some answers. Subq has changed

Tristens life!

le

Sent from my iPod

On Oct 6, 2009, at 8:22 AM, " " <taw1492@...> wrote:

Thanks for the suggestions. I am glad to see that I am not off base by being

concerned. I think today I am going to call Dr. Wara and push a little more. I

just don't think Jordan should have to live this way. (nor should we!). Anyone

have any suggestions about Stanford if I do go for a second opinion?

>

> ,

> My son is almost 6 and his overall IgG number is slightly within " normal "

range.

> We are faced with the same issues you are demonstrating right now. He has only

been on antibiotics twice since January, but this is not the norm. He has never

had to be hospitalized, but always seems to be sick. This winter might be a

different story as many flu symptoms are tossed back and forth among these

little guys.

> The dr's are definitely on the fence as to wether or not to start IVIG. They

have of course seen worse, but have also seen better. Personally, I'm still not

convinced the risks outweigh the benefits--yet. Like you, we will retest him

every year an hope for the best.

> I am absolutely the paranoid mom when it comes to germs as well. I feel like

I am exhausting myself every moment of everyday trying to keep the kids healthy.

Each time he coughs or sneezes, my heart drops---I hate living like this and

pray it will all get better with time.

>

> - Pavlu

> Mom to & Payton

>

>

>

> ________________________________

> From: <taw1492@...>

>

> Sent: Mon, October 5, 2009 10:46:56 AM

> Subject: Frustrated!

>

>

> Hi All,

>

> It has been a while since I was here, but I need some advice.

>

> My son Jordan is 2 years old and has low IGG (specifically IGG2), IGA & IGM.

He also is anemic and has Celiacs Disease. Since I last emailed we thought we

had gotten good news, but I am finding out that it is really just more

frustrating.

>

> Basically, our local Immunologist hadn't treated a child as young as Jordan

before and wanted to start him on IVIG, but before doing so, he suggested a trip

to a Pediatric Immunologist. We were referred to UCSF's Dr. Wara. We were really

impressed with her. She really put our nerves at ease and basically told us that

Jordan's numbers were not that bad. She expects that over the next few years

they will improve and therefore decided to do nothing but retest him in 1 year.

Our pediatrician also agreed that his numbers weren't that bad and that we will

work with her to get him " supported " (she is a western trained MD but practices

mostly holistic med). I have been doing all she advised and also giving him

donated breast milk to help.

>

> What I am struggling with is when Jordan gets sick, it is worse than the rest

of us and quite often, but he doesn't end up in the hospital. However, the poor

kid is ALWAYS sick, with a fever, croup, diarrhea and ear infections. Over the

last three months he has been sick more than healthy. He has become very clingy

and attached to me and it is completely wearing me out. I was never really that

afraid of germs before, but now I think about it all the time. Where ever we go,

I worry about what is he going to pick up.

>

> I feel like because he was " boring " to the doctors he is suffering more than

he needs too. It so far hasn't affected his development, but I can tell that is

starting to affect his trust and security levels.

>

> Any recommendation would be much appreciated. Does anyone do the treatments on

their kids like this. Would we really see an improvement? Would it cause more

trauma to him then necessary?

>

> sorry for the long email and thanks in advance for your help

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Heres my issue my daughter Ariana has had scoliosis since she was born diagnosed

at 4 months(now 2yrs old),she is now in the cast as of July,but heres the thing

I also have an 8 1/2 month old named Alani and things have been bothering me for

a few months.Everyone says I'm paranoid but I'm not sure of this.Anyways I'm

thinking that Alani might have scoliosis too.Has this happened to anyone before

with a sibling having it? Ok I'll tell you why I think she has it.First I'll

tell you she is a very chunky baby so that is one of the reasons i'm not totally

sure,but she leans to one side,she has a shoulder lean, and to me it seem shes

growing some bumps on her back not bad like Arianas but it is so hard to tell

cause she has such a chubby back.She also clenthes her fists all the time with

her arms up to the side not sure if that has anything to do with it.But she also

has an issue with laying on her tummy for long periods of time just like

Ariana.I don't know what to do I'm so frustrated cause it's hard dealing with

one child having scoliosis but two I think I might just lose it.Well I know she

has a 9 month check up coming up so I'm gonna have her doctor check it out he is

the same doctor that Ariana has.I'm just worried that he'll think I'm paranoid

too.And with her being so chubby it's hard to see her spine. So please give me

some advice or what you think.I just need to talk to people that is going

through this too.

Ariana has double curve 26* and 34 with rotation!

Thanks,

Mandy,Adam,Ariana, & Alani

[Guest guest]

There are families on the group with 2 kids with infantile scoliosis.  I don't think you are crazy at all.  I would go in and ask to have an x-ray done. You will at least know either way.Jenn

Mommy to Cole & Max

[Guest guest]

Thanks I'm definantly gonna do that.It's just scary.I really dont know how I'll

handle it.I wonder if they felt like they were being paranoid especially when

others tell you that.But oh well its better to know than not.I just hope i am

being paranoid.

Thanks,

Mandy,Adam(12yrs),Ariana(2), & Alani(8mo.)

[Guest guest]

Mandy,

I understand your frustration. It is possible to have two children with infantile scoli, but uncommon. I would have your pediatrician order an x-ray to ease your mind. If it is scoli, then you are well-equipped to handle this. You are a strong woman and you will get through it. If it isn't, then you will have peace of mind. Believe me when i tell you that I scan children that are not even my own for signs of scoliosis! And my mind plays tricks on me even with the one that I have! Please keep me posted and I will be keeping you in my thoughts. - Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: MIMI <mimi12899@...>Subject: Frustrated!infantile scoliosis treatment Date: Friday, August 19, 2011, 1:35 AM

Heres my issue my daughter Ariana has had scoliosis since she was born diagnosed at 4 months(now 2yrs old),she is now in the cast as of July,but heres the thing I also have an 8 1/2 month old named Alani and things have been bothering me for a few months.Everyone says I'm paranoid but I'm not sure of this.Anyways I'm thinking that Alani might have scoliosis too.Has this happened to anyone before with a sibling having it? Ok I'll tell you why I think she has it.First I'll tell you she is a very chunky baby so that is one of the reasons i'm not totally sure,but she leans to one side,she has a shoulder lean, and to me it seem shes growing some bumps on her back not bad like Arianas but it is so hard to tell cause she has such a chubby back.She also clenthes her fists all the time with her arms up to the side not sure if that has anything to do with it.But she also has an issue with laying on her tummy for long periods of time just like Ariana.I don't

know what to do I'm so frustrated cause it's hard dealing with one child having scoliosis but two I think I might just lose it.Well I know she has a 9 month check up coming up so I'm gonna have her doctor check it out he is the same doctor that Ariana has.I'm just worried that he'll think I'm paranoid too.And with her being so chubby it's hard to see her spine. So please give me some advice or what you think.I just need to talk to people that is going through this too.Ariana has double curve 26* and 34 with rotation!Thanks,Mandy,Adam,Ariana, & Alani

[Guest guest]

I would definitely request an x-ray. If nothing else, than to ease your mind.

I can tell you that my 16 year old (who is severely special needs) came home with his prom picture, I freaked out (to myself of course). It was in that picture that I noticed that one should was much higher than the other. I figured that an x-ray couldn't hurt, so I asked the pediatrician to send me for one. Well, it turns out that I was right. It showed mild scoliosis. I even asked Shane's doctor (at his last casting in July) if he could take a look at tell me what he thought. He confirmed that, yes, my oldest has a slight curve (he figured about 12-16 degree) but told me that, "due to his age and the maturity of his bones, it won't progress any more and that because it's so minor, I have nothing to worry about." He wasn't born with the curve (like Shane was). His curve started when puberty started.

Also, I had to take my 13 year old for a physical (for school sports) and the pediatrician noticed a small curve in his spine as well. But, we know that when he had his physical last year, it was not there. Did I mention that he just started puberty about 6 months ago? In any case, his is even more mild than my 16 year old. So, I'm not concerned.

Plus, their neurologist (who is the head of their pediatric area) is aware of all their curves now and has noted them in their charts and will keep an eye on if they change (but they don't expect it to).

Again, I don't believe in "being paranoid". I do believe in being overly concerned especially when you have reason to be (a previous child with any medical condition).

Keep your sanity and get that x-ray. You will have peace of mind if it is nothing. You can get early treatment if there is something. In either case, DON'T SECOND GUESS YOURSELF. DO WHAT YOU FEEL IS BEST FOR YOU. It's better to have the x-ray and it be nothing, than to not have and finding out at a later time that it was something. And, you'll also have it as a base x-ray for future comparisions.

Just my opinion. Mother's know best.

When shopping online, use this linkhttp://www.ebates.com/rf.do?referrerid=uQZMsFDxy5I%3Dand help me earn my referral bonuswhich will get donated tothe Infantile Scoliosis Outreach Program(a 501c3 organization) that is helpingme since my 3 year old has been diagnosed withINFANTILE IDIOPATHIC SCOLIOSIS.You will also earn CASH BACK.SUZY ºOºsuzy3333

In a message dated 8/18/2011 9:35:44 P.M. Eastern Daylight Time, mimi12899@... writes:

Heres my issue my daughter Ariana has had scoliosis since she was born diagnosed at 4 months(now 2yrs old),she is now in the cast as of July,but heres the thing I also have an 8 1/2 month old named Alani and things have been bothering me for a few months.Everyone says I'm paranoid but I'm not sure of this.Anyways I'm thinking that Alani might have scoliosis too.Has this happened to anyone before with a sibling having it? Ok I'll tell you why I think she has it.First I'll tell you she is a very chunky baby so that is one of the reasons i'm not totally sure,but she leans to one side,she has a shoulder lean, and to me it seem shes growing some bumps on her back not bad like Arianas but it is so hard to tell cause she has such a chubby back.She also clenthes her fists all the time with her arms up to the side not sure if that has anything to do with it.But she also has an issue with laying on her tummy for long periods of time just like Ariana.I don't know what to do I'm so frustrated cause it's hard dealing with one child having scoliosis but two I think I might just lose it.Well I know she has a 9 month check up coming up so I'm gonna have her doctor check it out he is the same doctor that Ariana has.I'm just worried that he'll think I'm paranoid too.And with her being so chubby it's hard to see her spine. So please give me some advice or what you think.I just need to talk to people that is going through this too.Ariana has double curve 26* and 34 with rotation!Thanks,Mandy,Adam,Ariana, & Alani

[Guest guest]

ditto! you know your babe best

> I would definitely request an x-ray. If nothing else, than to ease your

> mind.

>

> I can tell you that my 16 year old (who is severely special needs) came

> home with his prom picture, I freaked out (to myself of course). It was

> in

> that picture that I noticed that one should was much higher than the

> other.

> I figured that an x-ray couldn't hurt, so I asked the pediatrician to

> send

> me for one. Well, it turns out that I was right. It showed mild

> scoliosis. I even asked Shane's doctor (at his last casting in July) if

> he could

> take a look at tell me what he thought. He confirmed that, yes, my

> oldest

> has a slight curve (he figured about 12-16 degree) but told me that, " due

> to

> his age and the maturity of his bones, it won't progress any more and

> that

> because it's so minor, I have nothing to worry about. " He wasn't born

> with the curve (like Shane was). His curve started when puberty started.

>

> Also, I had to take my 13 year old for a physical (for school sports) and

> the pediatrician noticed a small curve in his spine as well. But, we know

> that when he had his physical last year, it was not there. Did I mention

> that he just started puberty about 6 months ago? In any case, his is even

> more mild than my 16 year old. So, I'm not concerned.

>

> Plus, their neurologist (who is the head of their pediatric area) is aware

> of all their curves now and has noted them in their charts and will keep

> an eye on if they change (but they don't expect it to).

>

> Again, I don't believe in " being paranoid " . I do believe in being overly

> concerned especially when you have reason to be (a previous child with

> any

> medical condition).

>

> Keep your sanity and get that x-ray. You will have peace of mind if it

> is

> nothing. You can get early treatment if there is something. In either

> case, DON'T SECOND GUESS YOURSELF. DO WHAT YOU FEEL IS BEST FOR YOU.

> It's

> better to have the x-ray and it be nothing, than to not have and finding

> out

> at a later time that it was something. And, you'll also have it as a

> base

> x-ray for future comparisions.

>

> Just my opinion. Mother's know best.

>

>

> When shopping online, use this link

> _http://www.ebates.com/rf.do?referrerid=uQZMsFDxy5I%3D_

> (http://www.ebates.com/rf.do?referrerid=uQZMsFDxy5I=)

> and help me earn my referral bonus

> which will get donated to

> the Infantile Scoliosis Outreach Program

> (a 501c3 organization) that is helping

> me since my 3 year old has been diagnosed with

> INFANTILE IDIOPATHIC SCOLIOSIS.

>

> You will also earn CASH BACK.

>

> SUZY ºOº

> suzy3333

>

>

>

>

>

> In a message dated 8/18/2011 9:35:44 P.M. Eastern Daylight Time,

> mimi12899@... writes:

>

>

>

>

> Heres my issue my daughter Ariana has had scoliosis since she was born

> diagnosed at 4 months(now 2yrs old),she is now in the cast as of July,but

> heres the thing I also have an 8 1/2 month old named Alani and things have

> been

> bothering me for a few months.Everyone says I'm paranoid but I'm not sure

> of this.Anyways I'm thinking that Alani might have scoliosis too.Has this

> happened to anyone before with a sibling having it? Ok I'll tell you why I

> think she has it.First I'll tell you she is a very chunky baby so that is

> one

> of the reasons i'm not totally sure,but she leans to one side,she has a

> shoulder lean, and to me it seem shes growing some bumps on her back not

> bad

> like Arianas but it is so hard to tell cause she has such a chubby

> back.She

> also clenthes her fists all the time with her arms up to the side not

> sure

> if that has anything to do with it.But she also has an issue with laying

> on her tummy for long periods of time just like Ariana.I don't know what

> to

> do I'm so frustrated cause it's hard dealing with one child having

> scoliosis but two I think I might just lose it.Well I know she has a 9

> month check

> up coming up so I'm gonna have her doctor check it out he is the same

> doctor that Ariana has.I'm just worried that he'll think I'm paranoid

> too.And

> with her being so chubby it's hard to see her spine. So please give me

> some

> advice or what you think.I just need to talk to people that is going

> through

> this too.

>

> Ariana has double curve 26* and 34 with rotation!

> Thanks,

> Mandy,Adam,Ariana, & Alani

>

>

>

>

>

>

[Guest guest]

Thank you so much for the support.Sometimes I feel alone in this battle.I dont

get as much support and help as I should so that is probably why I feel this

way,but I do try to take it day by day.I just get frustrated and it dont help

cause I have post partum too.But again thanks.I'm so glad this message bored

exists cause I can talk to people that are having the same issues and me.

Sincerly,

Mandy

[Guest guest]

I just want to thank everyone for making me feel better.At least I'm not the

only one that scans everyone elses kids too,cause in my family we had a total of

10 babies in 2 1/2 years so I be checking them all.I do think that it makes you

stronger in ways but then again being paranoid comes back.Now I will always

worry about the scoliosis in my children.One has it and my lil one is giving me

a scare and then Now I have to worry about my son Adam who is 12 and is about to

hit puburety so they'll be checking him and he also has ADHD which is definently

a struggle with school work and his home life.I tell ya I dont know why things

turn out this way.All three of my children have asthma on top of it my 8 month

old has it the worst she has to take a nebulizer at home.Why does god do this to

these small children and then he puts them all in one family it crazy.

[Guest guest]

I've often wondered the same thing about God giving us our extra special kiddos and I really don't have an answer. But a mom on one of my other support groups posted these (The Brave Little Soul and Welcome to Holland) a long time ago and I thought I'd share. When I'm feeling down I read them again and they seem to help me, so maybe they will help you too.

Jane

The Brave Little Soulby AlessiNot too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?†God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.†The little soul was confused. “What do you mean,†he asked.†God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop

their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.†The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity." Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul

excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.†God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my

strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.†Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

Welcome To Holland by Perl Kingsleyc1987 by Perl Kingsley. All rights reserved. I am often asked to describe the experience of raisinga child with a disability - to try to help people whohave not shared that unique experience to understandit, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning afabulous vacation trip - to Italy. You buy a bunch ofguide books and make your wonderful plans. TheColiseum. The Michelangelo . The gondolas inVenice. You may learn some handy phrases in Italian.It's all very exciting.After months of eager anticipation, the day finallyarrives. You pack your bags and off you go.

Severalhours later, the plane lands. The stewardess comes inand says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? Isigned up for Italy! I'm supposed to be in Italy. Allmy life I've dreamed of going to Italy."But there's been a change in the flight plan. They'velanded in Holland and there you must stay.The important thing is that they haven't taken you toa horrible, disgusting, filthy place, full ofpestilence, famine and disease. It's just a differentplace.So you must go out and buy new guide books. And youmust learn a whole new language. And you will meet awhole new group of people you would never have met.It's just a different place. It's slower-paced thanItaly, less flashy than Italy. But after you've beenthere for a while and you catch your breath, you lookaround.... and you begin to notice that Holland haswindmills... .and

Holland has tulips. Holland even hasRembrandts.But everyone you know is busy coming and going fromItaly... and they're all bragging about what awonderful time they had there. And for the rest ofyour life, you will say "Yes, that's where I wassupposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever goaway... because the loss of that dream is a very verysignificant loss.But... if you spend your life mourning the fact thatyou didn't get to Italy, you may never be free toenjoy the very special, the very lovely things ...about Holland.

From: MIMI <mimi12899@...>infantile scoliosis treatment Sent: Friday, August 19, 2011 9:07 AMSubject: Re: Frustrated!

I just want to thank everyone for making me feel better.At least I'm not the only one that scans everyone elses kids too,cause in my family we had a total of 10 babies in 2 1/2 years so I be checking them all.I do think that it makes you stronger in ways but then again being paranoid comes back.Now I will always worry about the scoliosis in my children.One has it and my lil one is giving me a scare and then Now I have to worry about my son Adam who is 12 and is about to hit puburety so they'll be checking him and he also has ADHD which is definently a struggle with school work and his home life.I tell ya I dont know why things turn out this way.All three of my children have asthma on top of it my 8 month old has it the worst she has to take a nebulizer at home.Why does god do this to these small children and then he puts them all in one family it crazy.

[Guest guest]

Jane do you mind if I share thes on FB? Tonya PerkinsAsheboro,NCmother of ,12 & Nora,5 scoliosis, acid refluxIn between cast 11 and 12bracing for summerGreenville Shriners,SCFrom: Jane Bigler <janemhar@...>"infantile scoliosis treatment " <infantile scoliosis treatment >Sent: Friday, August 19, 2011 12:20 PMSubject: Re: Re: Frustrated!

I've often wondered the same thing about God giving us our extra special kiddos and I really don't have an answer. But a mom on one of my other support groups posted these (The Brave Little Soul and Welcome to Holland) a long time ago and I thought I'd share. When I'm feeling down I read them again and they seem to help me, so maybe they will help you too.

Jane

The Brave Little Soulby AlessiNot too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?†God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.†The little soul was confused. “What do you mean,†he asked.†God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop

their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.†The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity." Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul

excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.†God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my

strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.†Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

Welcome To Holland by Perl Kingsleyc1987 by Perl Kingsley. All rights reserved. I am often asked to describe the experience of raisinga child with a disability - to try to help people whohave not shared that unique experience to understandit, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning afabulous vacation trip - to Italy. You buy a bunch ofguide books and make your wonderful plans. TheColiseum. The Michelangelo . The gondolas inVenice. You may learn some handy phrases in Italian.It's all very exciting.After months of eager anticipation, the day finallyarrives. You pack your bags and off you go.

Severalhours later, the plane lands. The stewardess comes inand says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? Isigned up for Italy! I'm supposed to be in Italy. Allmy life I've dreamed of going to Italy."But there's been a change in the flight plan. They'velanded in Holland and there you must stay.The important thing is that they haven't taken you toa horrible, disgusting, filthy place, full ofpestilence, famine and disease. It's just a differentplace.So you must go out and buy new guide books. And youmust learn a whole new language. And you will meet awhole new group of people you would never have met.It's just a different place. It's slower-paced thanItaly, less flashy than Italy. But after you've beenthere for a while and you catch your breath, you lookaround.... and you begin to notice that Holland haswindmills... .and

Holland has tulips. Holland even hasRembrandts.But everyone you know is busy coming and going fromItaly... and they're all bragging about what awonderful time they had there. And for the rest ofyour life, you will say "Yes, that's where I wassupposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever goaway... because the loss of that dream is a very verysignificant loss.But... if you spend your life mourning the fact thatyou didn't get to Italy, you may never be free toenjoy the very special, the very lovely things ...about Holland.

From: MIMI <mimi12899@...>infantile scoliosis treatment Sent: Friday, August 19, 2011 9:07 AMSubject: Re: Frustrated!

I just want to thank everyone for making me feel better.At least I'm not the only one that scans everyone elses kids too,cause in my family we had a total of 10 babies in 2 1/2 years so I be checking them all.I do think that it makes you stronger in ways but then again being paranoid comes back.Now I will always worry about the scoliosis in my children.One has it and my lil one is giving me a scare and then Now I have to worry about my son Adam who is 12 and is about to hit puburety so they'll be checking him and he also has ADHD which is definently a struggle with school work and his home life.I tell ya I dont know why things turn out this way.All three of my children have asthma on top of it my 8 month old has it the worst she has to take a nebulizer at home.Why does god do this to these small children and then he puts them all in one family it crazy.

[Guest guest]

Tonya, fine by me, just make sure the "credit" is there (Not me, the author, lol)

Jane

From: tonya williams <jamienoramom@...>"infantile scoliosis treatment " <infantile scoliosis treatment >Sent: Friday, August 19, 2011 11:48 AMSubject: Re: Re: Frustrated!

Jane do you mind if I share thes on FB?

Tonya Perkins

Asheboro,NC

mother of ,12 &

Nora,5 scoliosis, acid reflux

In between cast 11 and 12

bracing for summer

Greenville Shriners,SC

From: Jane Bigler <janemhar@...>"infantile scoliosis treatment " <infantile scoliosis treatment >Sent: Friday, August 19, 2011 12:20 PMSubject: Re: Re: Frustrated!

I've often wondered the same thing about God giving us our extra special kiddos and I really don't have an answer. But a mom on one of my other support groups posted these (The Brave Little Soul and Welcome to Holland) a long time ago and I thought I'd share. When I'm feeling down I read them again and they seem to help me, so maybe they will help you too.

Jane

The Brave Little Soulby AlessiNot too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?†God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.†The little soul was confused. “What do you mean,†he asked.†God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.†The little soul began

to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity." Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that

miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.†God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.†Thus at that moment the

brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

Welcome To Holland by Perl Kingsleyc1987 by Perl Kingsley. All rights reserved. I am often asked to describe the experience of raisinga child with a disability - to try to help people whohave not shared that unique experience to understandit, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning afabulous vacation trip - to Italy. You buy a bunch ofguide books and make your wonderful plans. TheColiseum. The Michelangelo . The gondolas inVenice. You may learn some handy phrases in Italian.It's all very exciting.After months of eager anticipation, the day finallyarrives. You pack your bags and off you go. Severalhours later, the plane lands. The stewardess comes inand says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? Isigned up for

Italy! I'm supposed to be in Italy. Allmy life I've dreamed of going to Italy."But there's been a change in the flight plan. They'velanded in Holland and there you must stay.The important thing is that they haven't taken you toa horrible, disgusting, filthy place, full ofpestilence, famine and disease. It's just a differentplace.So you must go out and buy new guide books. And youmust learn a whole new language. And you will meet awhole new group of people you would never have met.It's just a different place. It's slower-paced thanItaly, less flashy than Italy. But after you've beenthere for a while and you catch your breath, you lookaround.... and you begin to notice that Holland haswindmills... .and Holland has tulips. Holland even hasRembrandts.But everyone you know is busy coming and going fromItaly... and they're all bragging about what awonderful time

they had there. And for the rest ofyour life, you will say "Yes, that's where I wassupposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever goaway... because the loss of that dream is a very verysignificant loss.But... if you spend your life mourning the fact thatyou didn't get to Italy, you may never be free toenjoy the very special, the very lovely things ...about Holland.

From: MIMI <mimi12899@...>infantile scoliosis treatment Sent: Friday, August 19, 2011 9:07 AMSubject: Re: Frustrated!

I just want to thank everyone for making me feel better.At least I'm not the only one that scans everyone elses kids too,cause in my family we had a total of 10 babies in 2 1/2 years so I be checking them all.I do think that it makes you stronger in ways but then again being paranoid comes back.Now I will always worry about the scoliosis in my children.One has it and my lil one is giving me a scare and then Now I have to worry about my son Adam who is 12 and is about to hit puburety so they'll be checking him and he also has ADHD which is definently a struggle with school work and his home life.I tell ya I dont know why things turn out this way.All three of my children have asthma on top of it my 8 month old has it the worst she has to take a nebulizer at home.Why does god do this to these small children and then he puts them all in one family it

crazy.