Questions

[Guest guest]

Welcome Shirley.

Koala-t hugs,

Cathy

[Guest guest]

I should have wrote my name is shirley and I have been dealing with this for a

long time I get very discourage not being able to do the things I use to and I

have worked all of my life since the age of 15. It was hard to go on disability

and admit I couldn't do things any more like I want to be able too!!! Hello

everybody I am looking forward to being in this group and hoping I will better

understand why this happened to me!! shirley

questions

Would you share any or all of the things below? Your answer might just

be a help to someone else in some areas.

If you answer any of these questions please cut & paste it to your

email, and make a double space ( enter twice) between each question so they

will not all run together.

Age range: 40

Male/female: Female

What are the symptoms? I am tired all the time, can't sleep at night I hurt in

my shoulders, neck, back, legs, arms all over actually Have frequent headaches

Depressed, have thyroid trouble

Has you illness been diagnosed? yes I have fibromyalgia, chronic fatigue

syndrome, arthritis, depression, anxiety, thyroid, sinus problems,

How long did you suffer before you got help? For 3 years I went to doctors and

they never knew what was wrong with me then a holistic doctor discovered it, she

is no longer around her. I take meds but don't help much. I have been dealing

with this for 5 years now.

Is there a time that you can remember when it started? 5 years ago after I had

hive real bad they lasted for a week at the time I was having a root canel done.

Some of us have found lack of exercise we are overweight. Have you

found this to be a problem also? yes I am seriously overweight

Are you on disability? yes

If you are any pointers for others trying to get on disability? Just make

sure you have medical records from every where you have been

What have you found that helps ease the pain, warm baths, medications

etc.? Nothing really I mean I take pain meds but have to switch off every

two weeks as it quits working. as for a bath well to big to get in my tub warm

showers kind of help if have the energy to do it. Laying down and resting helps

most of all!!!

Do you have sleep problems? How do you deal with it?

Yes I have sleep problems, I just deal with it watch tv or read or computer

till I start hurting.

Do you have family that understands your illness? Oh sometimes but for being

so young they don't see how I am like I am believe me I don't understand it

either

Some have found certain foods causes problems with CFS or Fibro, have

you? yes breads and sugar , anything with starches seems to make things

worse. caffiene is the bad one!!!

What type of Doctor have you found that has helped you the most? I have a

regular doctor now and don't really think she is helping very well. The

holistic doctor helped me the most!!!! Tring to find another in the area but no

luck.

[Guest guest]

I should have wrote my name is shirley and I have been dealing with this for a

long time I get very discourage not being able to do the things I use to and I

have worked all of my life since the age of 15. It was hard to go on disability

and admit I couldn't do things any more like I want to be able too!!! Hello

everybody I am looking forward to being in this group and hoping I will better

understand why this happened to me!! shirley

questions

Would you share any or all of the things below? Your answer might just

be a help to someone else in some areas.

If you answer any of these questions please cut & paste it to your

email, and make a double space ( enter twice) between each question so they

will not all run together.

Age range: 40

Male/female: Female

What are the symptoms? I am tired all the time, can't sleep at night I hurt in

my shoulders, neck, back, legs, arms all over actually Have frequent headaches

Depressed, have thyroid trouble

Has you illness been diagnosed? yes I have fibromyalgia, chronic fatigue

syndrome, arthritis, depression, anxiety, thyroid, sinus problems,

How long did you suffer before you got help? For 3 years I went to doctors and

they never knew what was wrong with me then a holistic doctor discovered it, she

is no longer around her. I take meds but don't help much. I have been dealing

with this for 5 years now.

Is there a time that you can remember when it started? 5 years ago after I had

hive real bad they lasted for a week at the time I was having a root canel done.

Some of us have found lack of exercise we are overweight. Have you

found this to be a problem also? yes I am seriously overweight

Are you on disability? yes

If you are any pointers for others trying to get on disability? Just make

sure you have medical records from every where you have been

What have you found that helps ease the pain, warm baths, medications

etc.? Nothing really I mean I take pain meds but have to switch off every

two weeks as it quits working. as for a bath well to big to get in my tub warm

showers kind of help if have the energy to do it. Laying down and resting helps

most of all!!!

Do you have sleep problems? How do you deal with it?

Yes I have sleep problems, I just deal with it watch tv or read or computer

till I start hurting.

Do you have family that understands your illness? Oh sometimes but for being

so young they don't see how I am like I am believe me I don't understand it

either

Some have found certain foods causes problems with CFS or Fibro, have

you? yes breads and sugar , anything with starches seems to make things

worse. caffiene is the bad one!!!

What type of Doctor have you found that has helped you the most? I have a

regular doctor now and don't really think she is helping very well. The

holistic doctor helped me the most!!!! Tring to find another in the area but no

luck.

[Guest guest]

Thanks!!! shirley

Re: questions

Welcome Shirley.

Koala-t hugs,

Cathy

[Guest guest]

Thanks!!! shirley

Re: questions

Welcome Shirley.

Koala-t hugs,

Cathy

[Guest guest]

Shirley~

Welcome to the group. I hope your questions are answered. Ask away and most

questions are answered by someone in the group. Take care and have a great day.

Shirley thomas62@...> wrote: Thanks!!! shirley

Re: questions

Welcome Shirley.

Koala-t hugs,

Cathy

[Guest guest]

Shirley~

Welcome to the group. I hope your questions are answered. Ask away and most

questions are answered by someone in the group. Take care and have a great day.

Shirley thomas62@...> wrote: Thanks!!! shirley

Re: questions

Welcome Shirley.

Koala-t hugs,

Cathy

[Guest guest]

Thanks for welcoming me I have learned some already!! shirley

Re: questions

Welcome Shirley.

Koala-t hugs,

Cathy

[Guest guest]

Shirley,

> !!! Hello everybody I am looking forward to being in this group and

> hoping I will better understand why this happened to me!! shirley

Welcome to our group. I think it is a very good group with very good peopl;e.

We are a suppportive, caring and loving bunch. If you have any questions,

ask away. Someone will probable know the answer. If you feel like venting,

vent away. We have all been there.

I don't know if you will ever be able to know why fibro happened to you, We

all try and trcack down the reason but it is not easy to find. All we come

up with are more questions.

Take care,

Irene

Books may well be the only true magic

Alice Hoffman

[Guest guest]

Shirley,

> !!! Hello everybody I am looking forward to being in this group and

> hoping I will better understand why this happened to me!! shirley

Welcome to our group. I think it is a very good group with very good peopl;e.

We are a suppportive, caring and loving bunch. If you have any questions,

ask away. Someone will probable know the answer. If you feel like venting,

vent away. We have all been there.

I don't know if you will ever be able to know why fibro happened to you, We

all try and trcack down the reason but it is not easy to find. All we come

up with are more questions.

Take care,

Irene

Books may well be the only true magic

Alice Hoffman

[Guest guest]

~

Welcome to the group. I am assuming that you just joined. If I am assuming wrong

I appologize. My brain is foggy most of the time and my short term memory is

almost non-existant. Well, here I go with your symptoms.

>increased heartrate (100-110)- Yep, I sure do.

>increased bloodpressure- no, I have low blood pressure.

>extreme fatigue- yes, I sure do.

>extreme muscle weakness- Oh, yes, this I do have.

>muscle pain if any excercise- I have muscle pain even when not execrising.

>extreme headaches- I have migraines more than headaches.

>shortness of breath- Yes, this is very annoying.

>pain around my ribcage- Yes, it is horrable.

>loss of balance- I am dizzy also due to another medical condition.

>extreme sensitivity to light- When I have migraines.

>brain fog- Yup, most of the time. I am a free advertisment for 'Post-it'.

>overheating- Yup, I also have this with the fibro plus another medical

condition.

>tingling in feet- Yup, I also have problems with this and tingling in my hands.

>lack of appetite- Yea and no. Depends on how i feel that day.

>anxiety- my kids would say yes.

I also have Neurocardiogenic Syncope. It is also related to the Autonomic

Nervous System. From what I have read fibro & this nervious system are in some

way connected. I forget how the book I was reading explained it. If I can find

it again I will give you the name of the book. When I was reading about the

autonomic nervous system, it mentioned something about sensitivity to light.

Here is the website that talks about Autonomic Nervous System.

http://www.ndrf.org/ans.htm This is the webside of the National Dysautonomia

Research Foundation. It is a very informative website. I learned alot about

syncope. Here is the main page url: http://www.ndrf.org/. Where & when are you

flying? I wish you luck when you do set out and I hope they find answers for

you. You are in my thoughts.

~

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

[Guest guest]

~

Welcome to the group. I am assuming that you just joined. If I am assuming wrong

I appologize. My brain is foggy most of the time and my short term memory is

almost non-existant. Well, here I go with your symptoms.

>increased heartrate (100-110)- Yep, I sure do.

>increased bloodpressure- no, I have low blood pressure.

>extreme fatigue- yes, I sure do.

>extreme muscle weakness- Oh, yes, this I do have.

>muscle pain if any excercise- I have muscle pain even when not execrising.

>extreme headaches- I have migraines more than headaches.

>shortness of breath- Yes, this is very annoying.

>pain around my ribcage- Yes, it is horrable.

>loss of balance- I am dizzy also due to another medical condition.

>extreme sensitivity to light- When I have migraines.

>brain fog- Yup, most of the time. I am a free advertisment for 'Post-it'.

>overheating- Yup, I also have this with the fibro plus another medical

condition.

>tingling in feet- Yup, I also have problems with this and tingling in my hands.

>lack of appetite- Yea and no. Depends on how i feel that day.

>anxiety- my kids would say yes.

I also have Neurocardiogenic Syncope. It is also related to the Autonomic

Nervous System. From what I have read fibro & this nervious system are in some

way connected. I forget how the book I was reading explained it. If I can find

it again I will give you the name of the book. When I was reading about the

autonomic nervous system, it mentioned something about sensitivity to light.

Here is the website that talks about Autonomic Nervous System.

http://www.ndrf.org/ans.htm This is the webside of the National Dysautonomia

Research Foundation. It is a very informative website. I learned alot about

syncope. Here is the main page url: http://www.ndrf.org/. Where & when are you

flying? I wish you luck when you do set out and I hope they find answers for

you. You are in my thoughts.

~

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

[Guest guest]

~

Welcome to the group. I am assuming that you just joined. If I am assuming wrong

I appologize. My brain is foggy most of the time and my short term memory is

almost non-existant. Well, here I go with your symptoms.

>increased heartrate (100-110)- Yep, I sure do.

>increased bloodpressure- no, I have low blood pressure.

>extreme fatigue- yes, I sure do.

>extreme muscle weakness- Oh, yes, this I do have.

>muscle pain if any excercise- I have muscle pain even when not execrising.

>extreme headaches- I have migraines more than headaches.

>shortness of breath- Yes, this is very annoying.

>pain around my ribcage- Yes, it is horrable.

>loss of balance- I am dizzy also due to another medical condition.

>extreme sensitivity to light- When I have migraines.

>brain fog- Yup, most of the time. I am a free advertisment for 'Post-it'.

>overheating- Yup, I also have this with the fibro plus another medical

condition.

>tingling in feet- Yup, I also have problems with this and tingling in my hands.

>lack of appetite- Yea and no. Depends on how i feel that day.

>anxiety- my kids would say yes.

I also have Neurocardiogenic Syncope. It is also related to the Autonomic

Nervous System. From what I have read fibro & this nervious system are in some

way connected. I forget how the book I was reading explained it. If I can find

it again I will give you the name of the book. When I was reading about the

autonomic nervous system, it mentioned something about sensitivity to light.

Here is the website that talks about Autonomic Nervous System.

http://www.ndrf.org/ans.htm This is the webside of the National Dysautonomia

Research Foundation. It is a very informative website. I learned alot about

syncope. Here is the main page url: http://www.ndrf.org/. Where & when are you

flying? I wish you luck when you do set out and I hope they find answers for

you. You are in my thoughts.

~

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

[Guest guest]

wtayler2002 wrote:

> increased heartrate (100-110)-yup, mine stays around the 100 range, sometimes

to 105

> increased bloodpressure- yup, they've been trying to get mine down for two

years

> extreme fatigue- definitely a huge yes here. I ended up having to quit work

because of it and it has severely limited what I can do.

> extreme muscle weakness- yes, I have this especially in my legs, sometimes

they feel like they just aren't going to hold me up for very long

> muscle pain if any excercise- for me exercising raises my level of fatigue.

I've tried pushing past the fatigue, but it just doesn't work.

> extreme headaches- lots of headaches including some migraines.

> shortness of breath- sometimes I feel like this, but I usually realize, I'm

only shallow breathing, if I try to take a deep breath, I can.

> pain around my ribcage- above the sternum, on my left side

> loss of balance- another definitely huge yes. I've fallen a number of times,

I can't balance very well, I touch my hand to walls if I'm walking near them.

> extreme sensitivity to light- light that is already bright seems brighter to

me than it does to others. When I've got a nasty headache, I can't tolerate

light. Flickering light is also one of my migraine triggers.

> brain fog- classic sign of fibro. I get it, sometimes I can't remember what I

was going to say, sometimes I can't remember the word I want to say, can't

remember facts I know perfectly well (how to start a car or write a check),

can't do math, can't understand what someone is trying to tell me.

> overheating- I overheat very easily these days.

> tingling in feet- I get this every so often, sometimes in my hands, but mostly

in my legs and feet.

> lack of appetite- no, I still can eat, although on a very rare occasion I

won't feel like eating as much.

> anxiety- another huge yes

>

> I appreciate any feedback you can give me. I'm due to fly out to

> see these specialists next month and I now wonder if we are headed

> down the wrong path altogether.

I don't think you're heading down the wrong path, but you need to get

things like lupus and MS, and lymes ruled out first. The people you're

going to see should do this for you.

Darcy

[Guest guest]

wtayler2002 wrote:

> increased heartrate (100-110)-yup, mine stays around the 100 range, sometimes

to 105

> increased bloodpressure- yup, they've been trying to get mine down for two

years

> extreme fatigue- definitely a huge yes here. I ended up having to quit work

because of it and it has severely limited what I can do.

> extreme muscle weakness- yes, I have this especially in my legs, sometimes

they feel like they just aren't going to hold me up for very long

> muscle pain if any excercise- for me exercising raises my level of fatigue.

I've tried pushing past the fatigue, but it just doesn't work.

> extreme headaches- lots of headaches including some migraines.

> shortness of breath- sometimes I feel like this, but I usually realize, I'm

only shallow breathing, if I try to take a deep breath, I can.

> pain around my ribcage- above the sternum, on my left side

> loss of balance- another definitely huge yes. I've fallen a number of times,

I can't balance very well, I touch my hand to walls if I'm walking near them.

> extreme sensitivity to light- light that is already bright seems brighter to

me than it does to others. When I've got a nasty headache, I can't tolerate

light. Flickering light is also one of my migraine triggers.

> brain fog- classic sign of fibro. I get it, sometimes I can't remember what I

was going to say, sometimes I can't remember the word I want to say, can't

remember facts I know perfectly well (how to start a car or write a check),

can't do math, can't understand what someone is trying to tell me.

> overheating- I overheat very easily these days.

> tingling in feet- I get this every so often, sometimes in my hands, but mostly

in my legs and feet.

> lack of appetite- no, I still can eat, although on a very rare occasion I

won't feel like eating as much.

> anxiety- another huge yes

>

> I appreciate any feedback you can give me. I'm due to fly out to

> see these specialists next month and I now wonder if we are headed

> down the wrong path altogether.

I don't think you're heading down the wrong path, but you need to get

things like lupus and MS, and lymes ruled out first. The people you're

going to see should do this for you.

Darcy

[Guest guest]

wtayler2002 wrote:

> increased heartrate (100-110)-yup, mine stays around the 100 range, sometimes

to 105

> increased bloodpressure- yup, they've been trying to get mine down for two

years

> extreme fatigue- definitely a huge yes here. I ended up having to quit work

because of it and it has severely limited what I can do.

> extreme muscle weakness- yes, I have this especially in my legs, sometimes

they feel like they just aren't going to hold me up for very long

> muscle pain if any excercise- for me exercising raises my level of fatigue.

I've tried pushing past the fatigue, but it just doesn't work.

> extreme headaches- lots of headaches including some migraines.

> shortness of breath- sometimes I feel like this, but I usually realize, I'm

only shallow breathing, if I try to take a deep breath, I can.

> pain around my ribcage- above the sternum, on my left side

> loss of balance- another definitely huge yes. I've fallen a number of times,

I can't balance very well, I touch my hand to walls if I'm walking near them.

> extreme sensitivity to light- light that is already bright seems brighter to

me than it does to others. When I've got a nasty headache, I can't tolerate

light. Flickering light is also one of my migraine triggers.

> brain fog- classic sign of fibro. I get it, sometimes I can't remember what I

was going to say, sometimes I can't remember the word I want to say, can't

remember facts I know perfectly well (how to start a car or write a check),

can't do math, can't understand what someone is trying to tell me.

> overheating- I overheat very easily these days.

> tingling in feet- I get this every so often, sometimes in my hands, but mostly

in my legs and feet.

> lack of appetite- no, I still can eat, although on a very rare occasion I

won't feel like eating as much.

> anxiety- another huge yes

>

> I appreciate any feedback you can give me. I'm due to fly out to

> see these specialists next month and I now wonder if we are headed

> down the wrong path altogether.

I don't think you're heading down the wrong path, but you need to get

things like lupus and MS, and lymes ruled out first. The people you're

going to see should do this for you.

Darcy

[Guest guest]

Hi

I just wanted you to know that I have all those symptoms too. Please keep us

informed what the specialist says. I am sure there will be a lot of us that

would want to hear what was said. I have several types of arthritis, Fibro,

High Blood Pressure, Hypothyroidism, and diabetes.

Gentle Hugs

Sherry in SC

" In order to succeed you must fail, so that you know what not to do the next

time. "

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Hi

I just wanted you to know that I have all those symptoms too. Please keep us

informed what the specialist says. I am sure there will be a lot of us that

would want to hear what was said. I have several types of arthritis, Fibro,

High Blood Pressure, Hypothyroidism, and diabetes.

Gentle Hugs

Sherry in SC

" In order to succeed you must fail, so that you know what not to do the next

time. "

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Hi

I just wanted you to know that I have all those symptoms too. Please keep us

informed what the specialist says. I am sure there will be a lot of us that

would want to hear what was said. I have several types of arthritis, Fibro,

High Blood Pressure, Hypothyroidism, and diabetes.

Gentle Hugs

Sherry in SC

" In order to succeed you must fail, so that you know what not to do the next

time. "

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

It just like a satellite . Part of the same clinic------a branch office

might explain it better. They are all paid by same place, have same

boss:):): it really is a branch. Sometimes, they do that so folks don't

have to travel so far to see a CF clinic...

best wishes,

Love & hugs, GrandmomBEV

questions

Ok everyone, I hope you can help. I have one pretty easy question.

When looking on the CFF website I noticed under the care centers was

of course LA Childrens and then it showed an " affiliate " in Ventura.

Dr Landon ( I think the first name was ) What is an

affiliate. Could he treat Wyatt or would we still need to go to

Clinic in LA? Ventura is a hop/skip and a jump away from the base so

that would be great. Anyways, maybe someone will know.

Second and this is a little harder. Wyatt was born and had meconium

illeus. His docs sent his blood to Oakland Children's for a genetic

test just looking at 10 mutations. Delta F508 being one of them. It

states he was negative for all 10 mutations. Then it says " His

Haplotypes using XV2c and KM19 linked markers are CC. Only 1/1040 CF

patients w/out a Delta F508 mutation would have this haplotype. About

5% of cystic fibrosis patients have no Delta F508 deletion. However,

these results do not rule out CF and sweat chloride testing will be

indicated. "

Can anyone explain this to me in layman's terms. Also, the second

part of this is...LA Children's has told me he was retested for

mutations and he came out double Delta F508. I have never seen

paperwork on this it's just what they told me over the phone. When I

came to Hawaii my new doc was looking for all of this paperwork

because our insurance company needs it and could find nothing on his

sweat test or his gene testing. (HIs sweat test was done at 4mo old

and was positive by the way) So I called LA. They told me over the

phone he was double delta and said they would fax the paperwork to my

doc. THey never did and then said I had to do all of these things for

them to release them. (I was under the impression all of his records

would go with us when we moved-guess I was wrong)

so I'm confused about why his initial tests would say negative

Delta F508 and then a second test would say yes he is double Delta

F508. Does this sound right? I'm going to call LA Children's tomorrow

and try to get this faxed to us here. Otherwise I'm thinking he needs

to be tested again to make sure? I don't know.It's been a long

confusing day. I hate not going to one place for everything because

now my son's records are missing all sorts of documents. Thanks if

anyone can help! Christy mom of Wyatt 7wcf and Hunter 2.5wocf

PLEASE do not post religious emails to the list.

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

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

[Guest guest]

It just like a satellite . Part of the same clinic------a branch office

might explain it better. They are all paid by same place, have same

boss:):): it really is a branch. Sometimes, they do that so folks don't

have to travel so far to see a CF clinic...

best wishes,

Love & hugs, GrandmomBEV

questions

Ok everyone, I hope you can help. I have one pretty easy question.

When looking on the CFF website I noticed under the care centers was

of course LA Childrens and then it showed an " affiliate " in Ventura.

Dr Landon ( I think the first name was ) What is an

affiliate. Could he treat Wyatt or would we still need to go to

Clinic in LA? Ventura is a hop/skip and a jump away from the base so

that would be great. Anyways, maybe someone will know.

Second and this is a little harder. Wyatt was born and had meconium

illeus. His docs sent his blood to Oakland Children's for a genetic

test just looking at 10 mutations. Delta F508 being one of them. It

states he was negative for all 10 mutations. Then it says " His

Haplotypes using XV2c and KM19 linked markers are CC. Only 1/1040 CF

patients w/out a Delta F508 mutation would have this haplotype. About

5% of cystic fibrosis patients have no Delta F508 deletion. However,

these results do not rule out CF and sweat chloride testing will be

indicated. "

Can anyone explain this to me in layman's terms. Also, the second

part of this is...LA Children's has told me he was retested for

mutations and he came out double Delta F508. I have never seen

paperwork on this it's just what they told me over the phone. When I

came to Hawaii my new doc was looking for all of this paperwork

because our insurance company needs it and could find nothing on his

sweat test or his gene testing. (HIs sweat test was done at 4mo old

and was positive by the way) So I called LA. They told me over the

phone he was double delta and said they would fax the paperwork to my

doc. THey never did and then said I had to do all of these things for

them to release them. (I was under the impression all of his records

would go with us when we moved-guess I was wrong)

so I'm confused about why his initial tests would say negative

Delta F508 and then a second test would say yes he is double Delta

F508. Does this sound right? I'm going to call LA Children's tomorrow

and try to get this faxed to us here. Otherwise I'm thinking he needs

to be tested again to make sure? I don't know.It's been a long

confusing day. I hate not going to one place for everything because

now my son's records are missing all sorts of documents. Thanks if

anyone can help! Christy mom of Wyatt 7wcf and Hunter 2.5wocf

PLEASE do not post religious emails to the list.

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

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

[Guest guest]

Thanks Grandma Bev, Maybe we'll be able to see him and stay close to

home. Christy

> It just like a satellite . Part of the same clinic------a branch

office

> might explain it better. They are all paid by same place, have same

> boss:):): it really is a branch. Sometimes, they do that so folks

don't

> have to travel so far to see a CF clinic...

> best wishes,

>

> Love & hugs, GrandmomBEV

>

> questions

>

>

> Ok everyone, I hope you can help. I have one pretty easy question.

> When looking on the CFF website I noticed under the care centers was

> of course LA Childrens and then it showed an " affiliate " in Ventura.

> Dr Landon ( I think the first name was ) What is an

> affiliate. Could he treat Wyatt or would we still need to go to

> Clinic in LA? Ventura is a hop/skip and a jump away from the base so

> that would be great. Anyways, maybe someone will know.

> Second and this is a little harder. Wyatt was born and had

meconium

> illeus. His docs sent his blood to Oakland Children's for a genetic

> test just looking at 10 mutations. Delta F508 being one of them. It

> states he was negative for all 10 mutations. Then it says " His

> Haplotypes using XV2c and KM19 linked markers are CC. Only 1/1040 CF

> patients w/out a Delta F508 mutation would have this haplotype.

About

> 5% of cystic fibrosis patients have no Delta F508 deletion. However,

> these results do not rule out CF and sweat chloride testing will be

> indicated. "

> Can anyone explain this to me in layman's terms. Also, the second

> part of this is...LA Children's has told me he was retested for

> mutations and he came out double Delta F508. I have never seen

> paperwork on this it's just what they told me over the phone. When I

> came to Hawaii my new doc was looking for all of this paperwork

> because our insurance company needs it and could find nothing on his

> sweat test or his gene testing. (HIs sweat test was done at 4mo old

> and was positive by the way) So I called LA. They told me over the

> phone he was double delta and said they would fax the paperwork to

my

> doc. THey never did and then said I had to do all of these things

for

> them to release them. (I was under the impression all of his records

> would go with us when we moved-guess I was wrong)

> so I'm confused about why his initial tests would say negative

> Delta F508 and then a second test would say yes he is double Delta

> F508. Does this sound right? I'm going to call LA Children's

tomorrow

> and try to get this faxed to us here. Otherwise I'm thinking he

needs

> to be tested again to make sure? I don't know.It's been a long

> confusing day. I hate not going to one place for everything because

> now my son's records are missing all sorts of documents. Thanks if

> anyone can help! Christy mom of Wyatt 7wcf and Hunter 2.5wocf

>

>

>

> PLEASE do not post religious emails to the list.

>

>

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

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

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

>

>

>

[Guest guest]

Thanks Grandma Bev, Maybe we'll be able to see him and stay close to

home. Christy

> It just like a satellite . Part of the same clinic------a branch

office

> might explain it better. They are all paid by same place, have same

> boss:):): it really is a branch. Sometimes, they do that so folks

don't

> have to travel so far to see a CF clinic...

> best wishes,

>

> Love & hugs, GrandmomBEV

>

> questions

>

>

> Ok everyone, I hope you can help. I have one pretty easy question.

> When looking on the CFF website I noticed under the care centers was

> of course LA Childrens and then it showed an " affiliate " in Ventura.

> Dr Landon ( I think the first name was ) What is an

> affiliate. Could he treat Wyatt or would we still need to go to

> Clinic in LA? Ventura is a hop/skip and a jump away from the base so

> that would be great. Anyways, maybe someone will know.

> Second and this is a little harder. Wyatt was born and had

meconium

> illeus. His docs sent his blood to Oakland Children's for a genetic

> test just looking at 10 mutations. Delta F508 being one of them. It

> states he was negative for all 10 mutations. Then it says " His

> Haplotypes using XV2c and KM19 linked markers are CC. Only 1/1040 CF

> patients w/out a Delta F508 mutation would have this haplotype.

About

> 5% of cystic fibrosis patients have no Delta F508 deletion. However,

> these results do not rule out CF and sweat chloride testing will be

> indicated. "

> Can anyone explain this to me in layman's terms. Also, the second

> part of this is...LA Children's has told me he was retested for

> mutations and he came out double Delta F508. I have never seen

> paperwork on this it's just what they told me over the phone. When I

> came to Hawaii my new doc was looking for all of this paperwork

> because our insurance company needs it and could find nothing on his

> sweat test or his gene testing. (HIs sweat test was done at 4mo old

> and was positive by the way) So I called LA. They told me over the

> phone he was double delta and said they would fax the paperwork to

my

> doc. THey never did and then said I had to do all of these things

for

> them to release them. (I was under the impression all of his records

> would go with us when we moved-guess I was wrong)

> so I'm confused about why his initial tests would say negative

> Delta F508 and then a second test would say yes he is double Delta

> F508. Does this sound right? I'm going to call LA Children's

tomorrow

> and try to get this faxed to us here. Otherwise I'm thinking he

needs

> to be tested again to make sure? I don't know.It's been a long

> confusing day. I hate not going to one place for everything because

> now my son's records are missing all sorts of documents. Thanks if

> anyone can help! Christy mom of Wyatt 7wcf and Hunter 2.5wocf

>

>

>

> PLEASE do not post religious emails to the list.

>

>

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

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

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

>

>

>

[Guest guest]

I had a small lump (about the size of a large pea) in the same spot (just

below the hairline but on the left side), around the same time I was sick

with a sinus infection.

It lasted about 4 or 5 weeks and then went away.

M.

[Guest guest]

I had a small lump (about the size of a large pea) in the same spot (just

below the hairline but on the left side), around the same time I was sick

with a sinus infection.

It lasted about 4 or 5 weeks and then went away.

M.