New Member

[Guest guest]

Hi Kathie! Welcome to the group! YES ,, it IS worth it and since your doc took you off work for the year you are on tx,, just remember that it will be over with soon and then you can get back to your life!!! IT IS WORTH IT!!!!carolmowery <carolmowery@...> wrote: hi. I'm Kathie. i found out in nov of 05 i had hep c type 1a. i started treatments 5 weeks ago. i went from 32 million to 0. i have had a lot of problems. i'm sick all the time. the

doctor took me off work for a year. i was beginning to think it wasn't worth it now i know it is. i'll write when i can kathie in wisconsin Jackie

[Guest guest]

Hi Kim,

Regarding the Cimetidine, most pharmacies now can flavor the medicine

for you, just ask. It is wonderful. After smelling the Cimetidine, I

can't even being to think how awlful it would taste.

Bobbie (mother of - - 21 months old)

and 5 years old.

[Guest guest]

Are you from Illinois? We are in Quincy.

Trish

Becky Shay <buckbuck127@...> wrote:

Hi everyone, I just joined this group & wanted to introduce myself &

my son. My name is Becky & my son is Spencer. He is 5 years old & was just

diagnosed with @ 2wks ago. He has been dealing with the " episodes " for

about 1 year now. They seem to be about every 4-6wks apart. I noticed the

pattern about 5months ago & mentioned it to our pediatrician only to be told I

was over-reacting. (Anybody else get that???) He was rapid strep tested every

time & never tested positive, mono bloodwork was drawn 3x- also negative. We

were always told it was viral- go home, treat the fever & it will go away. I

finally was FED UP & started seeking other opinions. After seeing a new

pediatrician, he reccomended Children's Memorial in Chicago,IL. We saw the

Infectious disease dept one time & were given this diagnoses. At first I thought

it was a bunch of bull- just a label to get parents off the Dr's butt. However,

after joining this group it's starting to seem legit. I am

still a little worried that something terrible is being missed- God forbid.

It's comforting to know there are others out there dealing with the same thing.

(Not for the kids, but you know what I mean). We were told about the steroid

treatment but kind of discouraged from trying it. Hopefully he will outgrow it

soon. Sorry for the long intro- I'm just anxious to hear from people dealing

with the same thing. Thanks- Becky

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

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[Guest guest]

Yes, we live in Channahon,IL @ 20 minutes from Joliet,IL

trish santos <summerday148@...> wrote:

Are you from Illinois? We are in Quincy.

Trish

Becky Shay <buckbuck127@...> wrote:

Hi everyone, I just joined this group & wanted to introduce myself &

my son. My name is Becky & my son is Spencer. He is 5 years old & was just

diagnosed with @ 2wks ago. He has been dealing with the " episodes " for

about 1 year now. They seem to be about every 4-6wks apart. I noticed the

pattern about 5months ago & mentioned it to our pediatrician only to be told I

was over-reacting. (Anybody else get that???) He was rapid strep tested every

time & never tested positive, mono bloodwork was drawn 3x- also negative. We

were always told it was viral- go home, treat the fever & it will go away. I

finally was FED UP & started seeking other opinions. After seeing a new

pediatrician, he reccomended Children's Memorial in Chicago,IL. We saw the

Infectious disease dept one time & were given this diagnoses. At first I thought

it was a bunch of bull- just a label to get parents off the Dr's butt. However,

after joining this group it's starting to seem legit. I am

still a little worried that something terrible is being missed- God forbid.

It's comforting to know there are others out there dealing with the same thing.

(Not for the kids, but you know what I mean). We were told about the steroid

treatment but kind of discouraged from trying it. Hopefully he will outgrow it

soon. Sorry for the long intro- I'm just anxious to hear from people dealing

with the same thing. Thanks- Becky

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

Cheap Talk? Check out Messenger's low PC-to-Phone call rates.

[Guest guest]

Welcome Jacquie. That is really horrible that your grown children

won't support you, especially if they've seen your health

improvement. You are not alone, though. I'm sure many of us can

make claims about how our families think we are nuts.

Ann Marie

On Jan 5, 2007, at 9:56 AM, brooking_jacqueline wrote:

> My grown children are not at all

> supportive nor are any of my friends so I wanted to find like-minded

> people who are actually interested in the way to real health and

> wouldn't be defensive about discussing eating totally organically

> and not getting guilted into accepting the prepackaged, fast food

> way of life bandied about on TV.

[Guest guest]

Hi Jacquie,

My name is Bonnie and i am new to the group too. I like what you

have said. I too was looking for a group of like minded people. I am

just starting my journey of healthier eating,and there seems to be

alot of knowlegable people here and a lot of good info Bonnie

>

> I have always been interested in health, but have never found a

plan

> that really resonated with me and I've tried plenty of them. I'm

70

> years old and retired and decided a couple years ago to start

taking

> better care of my health if I wanted to enjoy the rest of my

life.

> I had all the usual problems associated with a poor diet and

> lifestyle: high blood pressure, high cholesterol, depression, 60

> pounds overweight, no exercise, etc.

>

> I found the Weston A. Price website and was interested in their

> approach to health so I bought Sally Fallon's and Enig's

> book " Eat Fat Lose Fat " . Well, what can I say...A miracle

> happened! I started using coconut oil religiously, buying all

> organic food and cooking everything from scratch including beet

> kvass, kefir, beef and chicken bone broths. I found the MVV farm

in

> Wisconsin and bought all my dairy products (raw milk, cream,

butter)

> eggs, grass fed beef, chicken, pork. I have followed WAP's advice

> and no longer have any of the health problems that I had

> previously.

>

> I have gone on several websites relating to healthy eating but I

> could never find a place that I felt really comfortable with. I

> just found out about the WAP local chapters and decided this might

> be what I am looking for. My grown children are not at all

> supportive nor are any of my friends so I wanted to find like-

minded

> people who are actually interested in the way to real health and

> wouldn't be defensive about discussing eating totally organically

> and not getting guilted into accepting the prepackaged, fast food

> way of life bandied about on TV.

>

> The swaps sound like fun a great way to meet people and discuss

the

> latest happenings in the natural food movement.

>

> Jacquie

>

[Guest guest]

Welcome Jacquie!Glad you found us.

You said you make your own beet Kvass. I am wondering if you use the salt

called for in the NT book??? I have made it but really can not stand the

saltiness and am wondering if it would still work with out the salt? Same with

the ginger aid drink and some of the others, do you really need to add the

salt???

Kimi

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

http://potterkimi.journalspace.com/

www.Jremedies.com

Therefore, my beloved brethren, be ye steadfast,

unmovable, always abounding in the work of the Lord, forasmuch as ye

know that your labor is not in vain in the Lord. 1 Corinthians 15:58/KJV

--- http://USFamily.Net/dialup.html - $8.25/mo! --

http://www.usfamily.net/dsl.html - $19.99/mo! ---

[Guest guest]

Welcome.... I don't know how good i can help you because i am only 14 years old... but welcome just try and think of positive thingsbonnie51baby <bonnie51baby@...> wrote: hello everyone, my name is bonnie i'm soon to be 53yrs, old.i'm a mother of 8, and grandmother of 8, and soon to be 10(have 2 new grandchildren coming in june). i suffer from depressionand strugle to make it through day to day. i hope i can help you ,and hope to get the support i need.thanks for letting me

join.thanksbonnie __________________________________________________

[Guest guest]

hi bonnie. i know what a struggle depression can be so don't hesitate to drop me a line if you ever need to. you will find lots of support in this group. evelynbonnie51baby <bonnie51baby@...> wrote: hello everyone, my name is bonnie i'm soon to be 53yrs, old.i'm a mother of 8, and grandmother of 8, and soon to be 10(have 2 new grandchildren coming in june). i suffer from depressionand strugle to make it through day to day. i hope i can help you ,and hope to

get the support i need.thanks for letting me join.thanksbonnie __________________________________________________

[Guest guest]

this group will be of great support to you. i hope you find the comfort and friendship you need here.margareto3002 <margareto3002@...> wrote: Hi there, I am a new member. I am from St. 's, Newfoundland, Canada. I am very happy to be part of this group. I have been diagnosed with Systemic Vasculitis, Henoch-Purpura Arthritis, and Crescentic Glomerolenephritis. Both the Arthritis and C.G. are under control but the vasculitis has affected my left foot and lower leg (nerve damage, numbness,

burning you know the drill). This has been steady for over a year now. Lots of meds, sleepless nights and frustration but taking one day at a time. Hoping someone out there is familiar with this and can share their story. I am okay with it and taking it one day at a time , as I know there is someone out there worse than I am. Thank you for accepting me as a new member, I have a feeling that this group will help me and my family of eight (the brady bunch? lol) __________________________________________________

[Guest guest]

Hello I am sorry you are so ill. I hope with medications things can

get handled. Welcome.

>

> Hi there, I am a new member. I am from St. 's, Newfoundland,

> Canada. I am very happy to be part of this group. I have been

> diagnosed with Systemic Vasculitis, Henoch-Purpura Arthritis, and

> Crescentic Glomerolenephritis. Both the Arthritis and C.G. are

under

> control but the vasculitis has affected my left foot and lower leg

> (nerve damage, numbness, burning you know the drill). This has been

> steady for over a year now. Lots of meds, sleepless nights and

> frustration but taking one day at a time. Hoping someone out there

is

> familiar with this and can share their story. I am okay with it

and

> taking it one day at a time , as I know there is someone out there

> worse than I am. Thank you for accepting me as a new member, I have

a

> feeling that this group will help me and my family of eight (the

brady

> bunch? lol)

>

[Guest guest]

Thanks Dawn

Thank you for replying to my message, enough about me, how long have

u been with the Group? Are you or someone in your family ill as well?

I hope u had a healthy and happy Xmas and New Year.

> >

> > Hi there, I am a new member. I am from St. 's, Newfoundland,

> > Canada. I am very happy to be part of this group. I have been

> > diagnosed with Systemic Vasculitis, Henoch-Purpura Arthritis, and

> > Crescentic Glomerolenephritis. Both the Arthritis and C.G. are

> under

> > control but the vasculitis has affected my left foot and lower

leg

> > (nerve damage, numbness, burning you know the drill). This has

been

> > steady for over a year now. Lots of meds, sleepless nights and

> > frustration but taking one day at a time. Hoping someone out

there

> is

> > familiar with this and can share their story. I am okay with it

> and

> > taking it one day at a time , as I know there is someone out

there

> > worse than I am. Thank you for accepting me as a new member, I

have

> a

> > feeling that this group will help me and my family of eight (the

> brady

> > bunch? lol)

> >

>

[Guest guest]

Margret

I have been with the group since August. I have a toddler and pre-

schooler. I am in the middle os testing for MS. I have been ill a

long time and now they found pale spots on my brain. I have an EEG,

MRA and Spinal this week.

My DH is the healthiest person I know.

Dawn

> > >

> > > Hi there, I am a new member. I am from St. 's,

Newfoundland,

> > > Canada. I am very happy to be part of this group. I have been

> > > diagnosed with Systemic Vasculitis, Henoch-Purpura Arthritis,

and

> > > Crescentic Glomerolenephritis. Both the Arthritis and C.G. are

> > under

> > > control but the vasculitis has affected my left foot and lower

> leg

> > > (nerve damage, numbness, burning you know the drill). This has

> been

> > > steady for over a year now. Lots of meds, sleepless nights and

> > > frustration but taking one day at a time. Hoping someone out

> there

> > is

> > > familiar with this and can share their story. I am okay with

it

> > and

> > > taking it one day at a time , as I know there is someone out

> there

> > > worse than I am. Thank you for accepting me as a new member, I

> have

> > a

> > > feeling that this group will help me and my family of eight

(the

> > brady

> > > bunch? lol)

> > >

> >

>

[Guest guest]

I too just found this group. My son Mikey was clinically diagnosed at

3 after countless doses of unnecessary antibiotics. He had a tonsils

and adenoid out almost 2 yrs ago and the occurrence of fever went

away. Unfortunately he has just had a return of symptoms, but I

definitely credit the operation for giving him that long without

getting sick. There is some research that supports this too. Why? Who

knows, but maybe it gives your child a break from this or even

eliminates it like it has for others. Mike Holder

>

[Guest guest]

Hi Mike,

My son is sceduled to have his tonsils removed soon. I am sorry to hear your

sons fevers have returned. Did your son stay in the hospital when his tonsils

were removed or did they send him home that day? I am so afraid that when he

does have the operation and has a set back with fever right away, how this will

affect him. It's very difficult to get him to drink with the fevers, I would

hate to think if he got fever shortly after having his tonsils removed what that

would do to him.

thank you.

Diane

mother to Jaeden age 5-

mh33123 <mh33123@...> wrote:

I too just found this group. My son Mikey was clinically diagnosed at

3 after countless doses of unnecessary antibiotics. He had a tonsils

and adenoid out almost 2 yrs ago and the occurrence of fever went

away. Unfortunately he has just had a return of symptoms, but I

definitely credit the operation for giving him that long without

getting sick. There is some research that supports this too. Why? Who

knows, but maybe it gives your child a break from this or even

eliminates it like it has for others. Mike Holder

>

__________________________________________________

[Guest guest]

Hi, -

This is indeed a great group to get info and support

on . When our son was finally diagnosed after a

year of fevers, we opted to treat each fever episode

with Prednisone. We needed to give him two 20mg doses

- with the doses 24 hours apart - to stop a fever

episode and keep it stopped. This was fine for us at

the beginning - the fevers were five weeks or so

apart, so we and our immunologist were not worried

about long-term side effects from the steroid.

However, in about 4 months, his fevers started coming

every 10 days apart - which you will find from reading

posts to this group will happen sometimes with

Prednisone therapy. So, we then, after reading this

site, asked out Immunologist to start our son on

Singulair. Being a very safe drug with almost no side

effects (we have yet to see a side effect), she

agreed. His last fever episode on January 1st was 114

days from the prior one. We treated that episode with

Prednisone and moved on. Now we are waiting to see

how long it takes for the next fever episode to

happen. So, you might want to investigate Singulair

every day in conjunction with Prednisone at each

episode to stop the fever. The only issue we had -

and this was just a few weeks ago - was with insurance

(Singulair is expensive) - they wanted us to

investigate other drugs for our son's asthma (which he

doesn't have!). Our doctor got involved and we got

approval for the Singulair to be covered for this

year. Some insurance companies might be difficult

since treatment is not an FDA approved use for

Singulair. My guess is that it might be hard to get

it into a clincial trial since the incidence is low -

but you never know. Our doctor is working on getting

it into the literature, so that might help!

Our best wishes on finding the best treatment option

and for your family as you walk the journey!

and Amy Newlon

Cincinnati, OH

W. Newlon

________________________________________________________________________________\

____

Have a burning question?

Go to www.Answers. and get answers from real people who know.

[Guest guest]

We are in the same boat, but our doctor won't diagnose Asthma, so we can't get

our insurance company to pay for it, even after letters from the doctor. Trish

Newlon <jasonnewlon@...> wrote:

Hi, -

This is indeed a great group to get info and support

on . When our son was finally diagnosed after a

year of fevers, we opted to treat each fever episode

with Prednisone. We needed to give him two 20mg doses

- with the doses 24 hours apart - to stop a fever

episode and keep it stopped. This was fine for us at

the beginning - the fevers were five weeks or so

apart, so we and our immunologist were not worried

about long-term side effects from the steroid.

However, in about 4 months, his fevers started coming

every 10 days apart - which you will find from reading

posts to this group will happen sometimes with

Prednisone therapy. So, we then, after reading this

site, asked out Immunologist to start our son on

Singulair. Being a very safe drug with almost no side

effects (we have yet to see a side effect), she

agreed. His last fever episode on January 1st was 114

days from the prior one. We treated that episode with

Prednisone and moved on. Now we are waiting to see

how long it takes for the next fever episode to

happen. So, you might want to investigate Singulair

every day in conjunction with Prednisone at each

episode to stop the fever. The only issue we had -

and this was just a few weeks ago - was with insurance

(Singulair is expensive) - they wanted us to

investigate other drugs for our son's asthma (which he

doesn't have!). Our doctor got involved and we got

approval for the Singulair to be covered for this

year. Some insurance companies might be difficult

since treatment is not an FDA approved use for

Singulair. My guess is that it might be hard to get

it into a clincial trial since the incidence is low -

but you never know. Our doctor is working on getting

it into the literature, so that might help!

Our best wishes on finding the best treatment option

and for your family as you walk the journey!

and Amy Newlon

Cincinnati, OH

W. Newlon

__________________________________________________________

Have a burning question?

Go to www.Answers. and get answers from real people who know.

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

Never Miss an Email

Stay connected with on your mobile. Get started!

[Guest guest]

We are in the same boat as well. Our pediatrician will not diagnose Asthma so

our insurance will not pay. My pediatrician did agree to give us every sample

of Singulair that is available in his office and all additional samples which

arrive. We are on our way to pick them up right now. I hope that it is enough

to last for a little while until we come up with an alternative method of

getting insurance coverage. If anyone has had success in getting insurance

coverage (other than using asthma) I would be grateful to hear about it.

Thank you.

Barb K

Ava 2 1/2 ()

trish santos <summerday148@...> wrote:

We are in the same boat, but our doctor won't diagnose Asthma, so we

can't get our insurance company to pay for it, even after letters from the

doctor. Trish

Newlon <jasonnewlon@...> wrote:

Hi, -

This is indeed a great group to get info and support

on . When our son was finally diagnosed after a

year of fevers, we opted to treat each fever episode

with Prednisone. We needed to give him two 20mg doses

- with the doses 24 hours apart - to stop a fever

episode and keep it stopped. This was fine for us at

the beginning - the fevers were five weeks or so

apart, so we and our immunologist were not worried

about long-term side effects from the steroid.

However, in about 4 months, his fevers started coming

every 10 days apart - which you will find from reading

posts to this group will happen sometimes with

Prednisone therapy. So, we then, after reading this

site, asked out Immunologist to start our son on

Singulair. Being a very safe drug with almost no side

effects (we have yet to see a side effect), she

agreed. His last fever episode on January 1st was 114

days from the prior one. We treated that episode with

Prednisone and moved on. Now we are waiting to see

how long it takes for the next fever episode to

happen. So, you might want to investigate Singulair

every day in conjunction with Prednisone at each

episode to stop the fever. The only issue we had -

and this was just a few weeks ago - was with insurance

(Singulair is expensive) - they wanted us to

investigate other drugs for our son's asthma (which he

doesn't have!). Our doctor got involved and we got

approval for the Singulair to be covered for this

year. Some insurance companies might be difficult

since treatment is not an FDA approved use for

Singulair. My guess is that it might be hard to get

it into a clincial trial since the incidence is low -

but you never know. Our doctor is working on getting

it into the literature, so that might help!

Our best wishes on finding the best treatment option

and for your family as you walk the journey!

and Amy Newlon

Cincinnati, OH

W. Newlon

__________________________________________________________

Have a burning question?

Go to www.Answers. and get answers from real people who know.

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

Never Miss an Email

Stay connected with on your mobile. Get started!

[Guest guest]

I'll have to ask our Dr. about samples, we are actually using our other

daughter's that has Asthma, they are both taking it every other day. We tried

the company, but make too much for assistance. Trish

Barbra Koloseike <barbrakolo@...> wrote: We are in the same boat

as well. Our pediatrician will not diagnose Asthma so our insurance will not

pay. My pediatrician did agree to give us every sample of Singulair that is

available in his office and all additional samples which arrive. We are on our

way to pick them up right now. I hope that it is enough to last for a little

while until we come up with an alternative method of getting insurance coverage.

If anyone has had success in getting insurance coverage (other than using

asthma) I would be grateful to hear about it.

Thank you.

Barb K

Ava 2 1/2 ()

trish santos <summerday148@...> wrote:

We are in the same boat, but our doctor won't diagnose Asthma, so we can't get

our insurance company to pay for it, even after letters from the doctor. Trish

Newlon <jasonnewlon@...> wrote:

Hi, -

This is indeed a great group to get info and support

on . When our son was finally diagnosed after a

year of fevers, we opted to treat each fever episode

with Prednisone. We needed to give him two 20mg doses

- with the doses 24 hours apart - to stop a fever

episode and keep it stopped. This was fine for us at

the beginning - the fevers were five weeks or so

apart, so we and our immunologist were not worried

about long-term side effects from the steroid.

However, in about 4 months, his fevers started coming

every 10 days apart - which you will find from reading

posts to this group will happen sometimes with

Prednisone therapy. So, we then, after reading this

site, asked out Immunologist to start our son on

Singulair. Being a very safe drug with almost no side

effects (we have yet to see a side effect), she

agreed. His last fever episode on January 1st was 114

days from the prior one. We treated that episode with

Prednisone and moved on. Now we are waiting to see

how long it takes for the next fever episode to

happen. So, you might want to investigate Singulair

every day in conjunction with Prednisone at each

episode to stop the fever. The only issue we had -

and this was just a few weeks ago - was with insurance

(Singulair is expensive) - they wanted us to

investigate other drugs for our son's asthma (which he

doesn't have!). Our doctor got involved and we got

approval for the Singulair to be covered for this

year. Some insurance companies might be difficult

since treatment is not an FDA approved use for

Singulair. My guess is that it might be hard to get

it into a clincial trial since the incidence is low -

but you never know. Our doctor is working on getting

it into the literature, so that might help!

Our best wishes on finding the best treatment option

and for your family as you walk the journey!

and Amy Newlon

Cincinnati, OH

W. Newlon

__________________________________________________________

Have a burning question?

Go to www.Answers. and get answers from real people who know.

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

Never Miss an Email

Stay connected with on your mobile. Get started!

[Guest guest]

Hello,

You should get your doctor to fill out family medical leave papers for you. At

least then your employer would have record of why you have to miss so much work.

I understand how difficult it is, and most employers frown on the amount of work

you have to miss. If you were to be let go with the back up of FMLA papers on

file you would be able to draw your unemployment.

My son starts kindergarten next year and I am concerned about how he will keep

up. We have even considered me being a stay at home Mom and home schooling. I

don't know how we could manage less my paycheck. My son was just diagnosed last

month with after about two years of fever. Prednisone knocks the fevers

out immediately but he still has the swollen limp nodes for about a week and

aches, and now the fevers come more often. I give my son massages and lots of

warm soothing drinks like tea with honey and lemon (he loves it). I'm basically

stuck to his side for about a week when he has an episode, and we are lucky to

have lots of support from Grandma's.

My son goes in for a tonsillectomy on February 20th. We are praying this

helps. I am also a new member and have read all the messages and with some

children tonsillectomies do help. Our ENT agreed to keep Jaeden in the Hospital

for two days for observation when he has it done. I will let you know how he

does with fevers afterwards.

Good luck to you and your family.

Diane

Mother to Jaeden 5yrs old-

matt bachman <21@...> wrote:

Hello,

I am the mother of 2 1/2 year old Maya who was diagnosed in April with .

She started getting her fever when she was 14 months old. She started getting

her fever every 4 weeks. It was very predictable. After many visits to the

doctor with them telling us that she just had a virus, we decided to go to

Children's Hospital to get a second opinion. A year later we had a diagnosis.

Her other symptoms include stomach ache with vomiting, and swollen tonsils with

many puss pockets.

We tried the prednisone and it worked great for getting rid of the fever.

However, it immediately increased her fevers to every 1-2 weeks. We decided then

to try the cimitidine. We are in our second month of taking that but it does not

seem to be helping. Once again her fevers have increased in frequency to 1-2

weeks. She is currently fevering and she just ended her last fever last

Wednesday. She has not even been fever free for a week. I feel so awful for her.

My husband and I are very frustrated, we discussed with her doctor today about a

tonsillectomy and are going to have a consultation with an ENT. We are hoping

and praying that this will be the answer but we are skeptical because nothing

else has worked.

We also have a 7 month old girl who we are hoping will not have the disease. I

know that there is not a hereditary link but it is still very scary.

My other concern (that I have not seen any mention of) is how do other working

parents cope with there child being sick all of the time. I am working part time

at a job that I really enjoy but find it very hard having to miss work all of

the time. Any comments?

Tina

Maya 2 1/2

Ava 7 mo

Arvada, CO

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

Have a burning question? Go to Answers and get answers from real people

who know.

[Guest guest]

Hello,

You should get your doctor to fill out family medical leave papers for you. At

least then your employer would have record of why you have to miss so much work.

I understand how difficult it is, and most employers frown on the amount of work

you have to miss. If you were to be let go with the back up of FMLA papers on

file you would be able to draw your unemployment.

My son starts kindergarten next year and I am concerned about how he will keep

up. We have even considered me being a stay at home Mom and home schooling. I

don't know how we could manage less my paycheck. My son was just diagnosed last

month with after about two years of fever. Prednisone knocks the fevers

out immediately but he still has the swollen limp nodes for about a week and

aches, and now the fevers come more often. I give my son massages and lots of

warm soothing drinks like tea with honey and lemon (he loves it). I'm basically

stuck to his side for about a week when he has an episode, and we are lucky to

have lots of support from Grandma's.

My son goes in for a tonsillectomy on February 20th. We are praying this

helps. I am also a new member and have read all the messages and with some

children tonsillectomies do help. Our ENT agreed to keep Jaeden in the Hospital

for two days for observation when he has it done. I will let you know how he

does with fevers afterwards.

Good luck to you and your family.

Diane

Mother to Jaeden 5yrs old-

matt bachman <21@...> wrote:

Hello,

I am the mother of 2 1/2 year old Maya who was diagnosed in April with .

She started getting her fever when she was 14 months old. She started getting

her fever every 4 weeks. It was very predictable. After many visits to the

doctor with them telling us that she just had a virus, we decided to go to

Children's Hospital to get a second opinion. A year later we had a diagnosis.

Her other symptoms include stomach ache with vomiting, and swollen tonsils with

many puss pockets.

We tried the prednisone and it worked great for getting rid of the fever.

However, it immediately increased her fevers to every 1-2 weeks. We decided then

to try the cimitidine. We are in our second month of taking that but it does not

seem to be helping. Once again her fevers have increased in frequency to 1-2

weeks. She is currently fevering and she just ended her last fever last

Wednesday. She has not even been fever free for a week. I feel so awful for her.

My husband and I are very frustrated, we discussed with her doctor today about a

tonsillectomy and are going to have a consultation with an ENT. We are hoping

and praying that this will be the answer but we are skeptical because nothing

else has worked.

We also have a 7 month old girl who we are hoping will not have the disease. I

know that there is not a hereditary link but it is still very scary.

My other concern (that I have not seen any mention of) is how do other working

parents cope with there child being sick all of the time. I am working part time

at a job that I really enjoy but find it very hard having to miss work all of

the time. Any comments?

Tina

Maya 2 1/2

Ava 7 mo

Arvada, CO

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

Have a burning question? Go to Answers and get answers from real people

who know.

[Guest guest]

Hello, We have a son and he had his tonsils & adnoids out Oct 06. He turned 4

in December and has been fever free since. I hope that a t & a will work for you

as it did for us. Cade had fever every 2 wks for over a year before we had the

operation. I just want everyone to know how well this has worked for us.

Cade's other symptoms were stomach ache, dark circles around eyes, he had mouth

sores one time, feet hurt, hands hurt, would not eat. Now he is like a normal

boy and our lives are normal. I work and his sickness was very hard for me and

my husband. Now we do not have the stress every two weeks. I hope that the

doctor will consider t & a for you because I feel that this has done wonderful

things for our Cade and our family.

Leanne

Cade 4 yrs

Alisha 20

25

matt bachman <21@...> wrote:

Hello,

I am the mother of 2 1/2 year old Maya who was diagnosed in April with .

She started getting her fever when she was 14 months old. She started getting

her fever every 4 weeks. It was very predictable. After many visits to the

doctor with them telling us that she just had a virus, we decided to go to

Children's Hospital to get a second opinion. A year later we had a diagnosis.

Her other symptoms include stomach ache with vomiting, and swollen tonsils with

many puss pockets.

We tried the prednisone and it worked great for getting rid of the fever.

However, it immediately increased her fevers to every 1-2 weeks. We decided then

to try the cimitidine. We are in our second month of taking that but it does not

seem to be helping. Once again her fevers have increased in frequency to 1-2

weeks. She is currently fevering and she just ended her last fever last

Wednesday. She has not even been fever free for a week. I feel so awful for her.

My husband and I are very frustrated, we discussed with her doctor today about a

tonsillectomy and are going to have a consultation with an ENT. We are hoping

and praying that this will be the answer but we are skeptical because nothing

else has worked.

We also have a 7 month old girl who we are hoping will not have the disease. I

know that there is not a hereditary link but it is still very scary.

My other concern (that I have not seen any mention of) is how do other working

parents cope with there child being sick all of the time. I am working part time

at a job that I really enjoy but find it very hard having to miss work all of

the time. Any comments?

Tina

Maya 2 1/2

Ava 7 mo

Arvada, CO

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

Have a burning question? Go to Answers and get answers from real people

who know.

[Guest guest]

Hi Tina,

I certainly feel for what you are going through. My son Will just turned 6

and is in Kindergarten. He had consistent fevers (every 3 weeks for 6 days

straight) from the time he was about 10 months old. As a mother who also worked

full time, this was SO stressful on everyone. I felt so bad for Will being

constantly sick, and guilty for missing so much work, and stressed that each day

my husband and I would look at each other and say " Who has the less demanding

schedule at work today? " so we could figure out our plan. Unfortunately we had

little family support to rely on. And by the way....we went without a diagnosis

for nearly three years, so were constantly wondering if there was a serious

underlying problem.

Because Will was constantly misdiagnosed with a virus...most frequently hand,

foot and mouth disease, you can imagine daycare wanted him as far away as

possible! The good news for us, is that once Will was diagnosed, and we found

out that he was not contagious, switched daycares, and had our pediatrician

write a description of his condition for the center, we have not had nearly as

big of problem. Now, what I will say, is that we have chosen to treat Will with

Prednisone (Cimetidine did not work for him), because rather than being sick for

6 days, he is sick for about 3 hours, but unfortunately more frequently (every

1-2 weeks on average). Because he is really feeling better quickly, and the

daycare knows he isn't contagious, they have been very accommodating by waiving

their " sick policy " for us when we know he is having a episode. We pick

him up if he comes down with a fever at school, treat him with prednisone, and

he is almost always back to his normal self

the next day and ready for school. It has allowed us to miss one day of work

every week or so, rather than 6 days every 3 weeks. I certainly don't advocate

sending a sick child to daycare, but if you are in a situation where treating

your daughter with prednisone is right for you and you have the same sort of

experience (which I understand is quite common), then I would ask your

pediatrician to support you to work with your daycare provider.

It will be interesting to see what happens next year when Will enters the

public school system as a first grader. Hopefully they will be as

accommodating. It will only be harder for Will if he needs to miss a lot of

school as he gets older.

Oh, the other thing that helped for me was being able to talk to my coworkers

and boss about his condition once Will was diagnosed, so they knew I wasn't

crazy!! I mean let's face it...unless you know about , it is a little

unbelievable! We go to the NIH in a week or so for our first visit, and

everyone at work is as excited to hear about the experience as we are.

This is hard. Hang in there. Best wishes to you and Maya.

Mother to Will Henry age 6 ()

and

Kolton age 11

matt bachman <21@...> wrote:

Hello,

I am the mother of 2 1/2 year old Maya who was diagnosed in April with .

She started getting her fever when she was 14 months old. She started getting

her fever every 4 weeks. It was very predictable. After many visits to the

doctor with them telling us that she just had a virus, we decided to go to

Children's Hospital to get a second opinion. A year later we had a diagnosis.

Her other symptoms include stomach ache with vomiting, and swollen tonsils with

many puss pockets.

We tried the prednisone and it worked great for getting rid of the fever.

However, it immediately increased her fevers to every 1-2 weeks. We decided then

to try the cimitidine. We are in our second month of taking that but it does not

seem to be helping. Once again her fevers have increased in frequency to 1-2

weeks. She is currently fevering and she just ended her last fever last

Wednesday. She has not even been fever free for a week. I feel so awful for her.

My husband and I are very frustrated, we discussed with her doctor today about a

tonsillectomy and are going to have a consultation with an ENT. We are hoping

and praying that this will be the answer but we are skeptical because nothing

else has worked.

We also have a 7 month old girl who we are hoping will not have the disease. I

know that there is not a hereditary link but it is still very scary.

My other concern (that I have not seen any mention of) is how do other working

parents cope with there child being sick all of the time. I am working part time

at a job that I really enjoy but find it very hard having to miss work all of

the time. Any comments?

Tina

Maya 2 1/2

Ava 7 mo

Arvada, CO

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

Have a burning question? Go to Answers and get answers from real people

who know.

[Guest guest]

My parents watch my son for me when he is sick - otherwise I have NO

idea how people cope. It has to be terribly hard.

I hate not being with him when he's sick though - but I don't really

have any other choice - I am a teacher and they have to get subs etc.

to fill in for me . . .

Good luck!

Hannah

Aidan - fevering 21 months - 3 years old

Sid - 5

[Guest guest]

I am a child care provider. I take care of a little girl with .

Once I knew she was not contagious it is okay to take care of her. We

cannot take children who are contagious but she isn't. When she gets

her fevers and pain (leg and mouth) I have her medicine and I give it to

her. She does very well on it and we find she doesn't think she is sick

so much that way. She handles it with just Tylenol and/or Motrin

(alternating) - that way her parents do not have to leave work and she

doesn't feel like she has to stay home and be " sick " . When the fever

hits she sometimes wants to sit and be held by one of us or just lay

down for a while - we just accommodate what she needs. If she wants to

just lay down and watch a video we let her but once her medicine kicks

in she is usually up for playing. She is more quiet and less active but

still plays. Check with your provider and see if you can bring a letter

from the doctor stating that is not contagious and there is no

danger to the other children and your son might be able to go to day

care. Just a suggestion but I hope your child care will be open to

the idea.

Joanne

Provider for Kimi 2 years old

hannahls73 wrote:

> My parents watch my son for me when he is sick - otherwise I have NO

> idea how people cope. It has to be terribly hard.

>

> I hate not being with him when he's sick though - but I don't really

> have any other choice - I am a teacher and they have to get subs etc.

> to fill in for me . . .

>

> Good luck!

> Hannah

> Aidan - fevering 21 months - 3 years old

> Sid - 5

>

>