Re: Christmas and

[Guest guest]

Hi Steve,

Happy Holidays.... This is so hard to deal with and with a 5 year old,

it can be brutal. I know exactly how hard it is to see your child deal

with feeling so bad and still they try to do the things they enjoy. The

dark eyes and pale skin and you know deep down how bad they feel. Even

when they don't have a fever or in a full blown episode. My daughter

started at 18 months and now is14. I have found that whenever something

happens in her life, like stress or even something fantastic, it brings

an episode on. Does that make sense? She is in middle school now and

her work load, I swear, Is like college level. When she misses school

and it is often, she is sicker. I watch her try to go and to be with

her friends and it breaks my heart.

What I try to do is keep her on a stable, even, emotional line. But,

teenagers get excited about everything. Haha. I know that when she was

5 it was hard not to do things to bring some kind of pure happiness to

her, but I did not realize that the stress takes a toll. Now I don't

think that there is a documented link between stress or emotional state

and Pfapa, but is sure seems like it in my house.

Ive been there and have done that so if you need to chat, please feel

free to contact me anytime. We did the searching for docs, and research

and just found nothing to cure my child. Stay strong and positive and

just get through one episode at a time. Thats seems to have worked for

us. Remember that your children see the emotional toll this takes on

you and your family and I believe that children are only as happy as

thier parents.

Again, Anytime...

Marcie Boonmema, New Jersey ,14

[Guest guest]

Hi Marcie, My son is 7 and has had Pfapa for two years now. I was told my our

doctor that they will out grow it, but

it seems as if what I am reading from this website is that these kids don't out

grow it as quickly as we hope. Reading

your email and knowing your daughter is now 14 and has had this since she was 18

months really worries me. Do you

see her outgrowing it, or is that just that they don't know enough about it.

Does your daughter get frequent episodes

like most kids? Have have noticed stress and lack of sleep bring on episodes

for my son.

Thanks, Killelea

[Guest guest]

Marcie, you are exactly correct about the stress thing, Ive watched her

close and the stress related times sparked instant fevers. I remember

the worst possible time was when my twins were born and one of them had

to be flown to University of Michigan because he swallowed mecomium

fluid and almost died. That fever was due to the fact that she was away

from mom and dad for the first time and she missed us, grandma didnt

know what to do so I had to pick her up and take her with us. Walking

around Uof M with a wife 48hrs out of a C section, a healthy newborn ,

a newborn in critical condition and a 2 and a half year old with a

fever of 104, I was almost numb.. I thank you for your kind words and

am so glad I can talk with other people who understand this. I told her

ballet teacher the other day about her because she was so sick

during class and she just stared at me(you know that stare I'm talking

about). When you tell people abot it I think their just wondering if

its something their gonna catch.. One last thought, I live next to

Canada in Michigan and we have like 6 months of winter and I swear the

extreme cold sparks fevers as well. what do you think about that?

Steve.

[Guest guest]

Hi Steve it think I can answer the one about the cold. There like old

people when the cold gets into there joints and they get very achy it in turn

starts an inflammatory attack which starts the vicious cycle of this syndrome.

Just

the other day we had our first cold day here. And my son who is going on 15

started an attack first in his joints and then the rest of the typical attack.

the dr. said it started because of the wet cold air outside. good luck to

you happy holidays char

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[Guest guest]

Hi Steve it think I can answer the one about the cold. There like old

people when the cold gets into there joints and they get very achy it in turn

starts an inflammatory attack which starts the vicious cycle of this syndrome.

Just

the other day we had our first cold day here. And my son who is going on 15

started an attack first in his joints and then the rest of the typical attack.

the dr. said it started because of the wet cold air outside. good luck to

you happy holidays char

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[Guest guest]

I wanted to respond to Steve and Marcie. First of all there is hope that they

can outgrow it as that is what I believe is happening with Teagan, age 2. She

was on a 3 week cycle until this past October and she has only had one episode

since that time. I'm not convinced its gone but she requires much more sleep

than my son whose now 3 ever did. A couple things we noticed with Teagan. We

to Lexington from Michigan 1.5 years ago, thats when we noticed the cycles and

she got much worse. We also noticed allergies in both of our children. She is

not on any medicine for it but i have heard some people say Singulair works

which makes me think allergies play a role. As for the stress, Teagan had a

seizure last June (not related to fevers) and that was due to stress we believe.

I was out of town on business and she had the stomach flu. She wasn't sleeping

much at all. Since that time, we have let her sleep as much as she wants which

is often 12 hrs at

night and 3-4 hour naps during the day. she is not in childcare, we have a

nanny as that would be too stressful. I think with school age children its

harder to manage their stress but I think the less extra curricular activity,

probably the better. The final thing we have done for Teagan is feed her almost

exclusively organic food due to the higher vitamin content which helps boost

their immune system. Thats not to say that she doesnt get mcdonalds at times as

she does, but i try to give her organic dairy and produce daily to boost her

immune system.

good luck and I am hopeful that your kids will outgrow it!

Stacey

[Guest guest]

I wanted to respond to Steve and Marcie. First of all there is hope that they

can outgrow it as that is what I believe is happening with Teagan, age 2. She

was on a 3 week cycle until this past October and she has only had one episode

since that time. I'm not convinced its gone but she requires much more sleep

than my son whose now 3 ever did. A couple things we noticed with Teagan. We

to Lexington from Michigan 1.5 years ago, thats when we noticed the cycles and

she got much worse. We also noticed allergies in both of our children. She is

not on any medicine for it but i have heard some people say Singulair works

which makes me think allergies play a role. As for the stress, Teagan had a

seizure last June (not related to fevers) and that was due to stress we believe.

I was out of town on business and she had the stomach flu. She wasn't sleeping

much at all. Since that time, we have let her sleep as much as she wants which

is often 12 hrs at

night and 3-4 hour naps during the day. she is not in childcare, we have a

nanny as that would be too stressful. I think with school age children its

harder to manage their stress but I think the less extra curricular activity,

probably the better. The final thing we have done for Teagan is feed her almost

exclusively organic food due to the higher vitamin content which helps boost

their immune system. Thats not to say that she doesnt get mcdonalds at times as

she does, but i try to give her organic dairy and produce daily to boost her

immune system.

good luck and I am hopeful that your kids will outgrow it!

Stacey

[Guest guest]

Hi Steve,

Stress is a big part of it. I know it is. Just last month, my

daughter was having a hard time playing catch up in school and she

had to major episodes back to back. She missed 2 1/2 weeks that

month. She is so consumed with passing school this year that she is

a physical mess. Im trying my best to keep her cool but I not sure

if Im helping her or making it worse.

I know what you mean about the STARE. Her school is giving us a real

hard time this year. Its almost like they don't believe she is sick.

She had a great break from the fevers from 8-12years. Then out of

the blue, it came back and it came back ugly. Her Ped ID doc told us

not to be surprised if it should come back as a teen. Like I said, I

think it is the stress that determins the intensity of the episodes.

s episodes when she was little, were the same everytime. Extreme

fever, headache, vomiting, mouth ulcers. When she started to get it

back last year or so, they were is parts. She would get the mouth

ulcers and a low fever(100-101)(Thats low in our book) or she would

get just the ulcers. We lost her doc in a car accident last year so

now we are starting from scratch. But you know what, the only thing

that can be done is give them the dose of steriod to ease the episode

or opt for the T/A. We chose to do the steriod. She went through

so many tests when she was young. She hates docs.

If you read through this site, you will find that there are people

who have lived with this all thier lives. There is a med student in

her 20's who posts here and there. Its amazing how many children

suffer from this and the docs seem not to have a clue.

It is so hard to see your 5 year old suffer. I think it takes a toll

on the children. I know is so tired of being sick. When she

plans events(and her social life is so important at this age)she

starts and episode almost everytime. My husband is in Iraq this year

so Im on my own with this, but its okay. I just want my daughter to

feel better. Just keep the kids happy and tell them its going to be

okay..... I know its not a medical solution, but you will bang your

head against the wall trying to figure this out. I know I did.

Kiss and hug your daughter and give her the best xmas you can.

Congrats on the twins..Nice. Some people have claimed that brothers

and sisters have this as well. Now saying this, I do believe this

because my daughter has a brother from her father and he is 4.

He lives in Nashville and was diagnosed with Pfapa last year. He had

a T/A last year and he still gets the episodes. Now my 4 year old

who has a different father, Nothing. She is fine. Keep a close eye

on your twins.

Merry xmas to your and your family and stay warm in Michigan. I use

to live in up state NY about 30 miles south of the Canadian boarder.

I so understand about the weather... Sure don't miss it!!!!!

[Guest guest]

Hi ,

did have a break from 8-12. We thought she was done, but it

came back when she was in the 7th grade and it came back in parts.

Just a fever, or just mouth ulcers, ect... Now it is back with all

its glory. Her episodes, now she is 14 are full blown,,,,104-105

fevers. We took her to the ER in March with a 105 fever and mouth

ulcers. The doc would not listen to me and when I told her about

and Pfapa, she just gave her advil and sent her home. Told me

she had a virus. I went there to get a steriod, at the time I did

not keep it in my house. At the hospital, she was tested for flu and

others virus and everything came back neg. Dumb doc. Anyway just

stay strong and get through one episode at time. Everything will be

okay. Thats how we do it in our house. We went through the mis-

diagnosis and bazillions of docs tell us that nothing was wrong. I

even thought I was one of those crazy moms. (Know what I mean).

I take every episode seriously but I don't plan my daughter life

around it. She is just as tired of it as I am and she is the one

going through it. Like I said before to another parent. We do it

one episode at a time. I think stress has something to do with

bringing the episodes on, so I try to keep as stress free as I

can. Everyting will be good,, you will see.

Merry xmas....

had a break, so maybe your son will too.....

Marcie, New Jersey

14

[Guest guest]

That makes sense to me. Thanks Char.

[Guest guest]

That makes sense to me. Thanks Char.

[Guest guest]

Stacey, Thanks for your information and I hope she will outgrow this.

She went through like an eight month period with no fevers and then

they came back as strong as ever. I thought that I was done with this

board but I guess this is a tricky disorder. I've heard so many people

with relapse stories that the outgrowing it thing my doctor talked

about seems far off. I hope you have success and your little one stays

fever free,  Thanks again ..... Steve.

[Guest guest]

Stacey, Thanks for your information and I hope she will outgrow this.

She went through like an eight month period with no fevers and then

they came back as strong as ever. I thought that I was done with this

board but I guess this is a tricky disorder. I've heard so many people

with relapse stories that the outgrowing it thing my doctor talked

about seems far off. I hope you have success and your little one stays

fever free,  Thanks again ..... Steve.

[Guest guest]

When you talk about stress it makes you wonder what exactly happens in

the chain of events in the body that could spark a fever. Stress can be

associated with so many health problems and everyone internalizes it

differantly. Maybe its a hormone reaction or the bodys reaction to a

certain hormone. I know Ive read about extreme headaches from hormones

and when they get them under control they quit. Your right when you say

you could bang your head against the wall thinking about it, I just

hope I live long enough to see the answer to this mystery... Good

luck.....   Steve.

[Guest guest]

When you talk about stress it makes you wonder what exactly happens in

the chain of events in the body that could spark a fever. Stress can be

associated with so many health problems and everyone internalizes it

differantly. Maybe its a hormone reaction or the bodys reaction to a

certain hormone. I know Ive read about extreme headaches from hormones

and when they get them under control they quit. Your right when you say

you could bang your head against the wall thinking about it, I just

hope I live long enough to see the answer to this mystery... Good

luck.....   Steve.

[Guest guest]

My son Darren, suffered with fever attacks all his life. Along with

his sister. We spent 10 years going to great ormond street childrens

hospital in London. No cure. He did indeed seem to have 'grown out of

it' at age 13, and he didnt have an attack for 5 years.

He is now 18. He had one attack in october and he is now suffering

again, 8 weeks later. He is currently in bed. Has been vomiting and

shivering. His temperature is 104. Its starting all over again. He

started at university in September and is living there away from

home. The stress of it all could have something to do with it? Hes

home now for christmas and another attack.

His sister now 20, never grew out of it and has suffered around

5 attacks a year all her life. She had 3 attacks July, August and

September, but nothing since then. She is booked in to have her

tonsils removed 29 December. I dont expect it to be 'the cure' but It

might reduced the frequency and severity.

Best wishes

Lee

England

father to

20 and Darren 18

[Guest guest]

My son Darren, suffered with fever attacks all his life. Along with

his sister. We spent 10 years going to great ormond street childrens

hospital in London. No cure. He did indeed seem to have 'grown out of

it' at age 13, and he didnt have an attack for 5 years.

He is now 18. He had one attack in october and he is now suffering

again, 8 weeks later. He is currently in bed. Has been vomiting and

shivering. His temperature is 104. Its starting all over again. He

started at university in September and is living there away from

home. The stress of it all could have something to do with it? Hes

home now for christmas and another attack.

His sister now 20, never grew out of it and has suffered around

5 attacks a year all her life. She had 3 attacks July, August and

September, but nothing since then. She is booked in to have her

tonsils removed 29 December. I dont expect it to be 'the cure' but It

might reduced the frequency and severity.

Best wishes

Lee

England

father to

20 and Darren 18

[Guest guest]

My son Darren, suffered with fever attacks all his life. Along with

his sister. We spent 10 years going to great ormond street childrens

hospital in London. No cure. He did indeed seem to have 'grown out of

it' at age 13, and he didnt have an attack for 5 years.

He is now 18. He had one attack in october and he is now suffering

again, 8 weeks later. He is currently in bed. Has been vomiting and

shivering. His temperature is 104. Its starting all over again. He

started at university in September and is living there away from

home. The stress of it all could have something to do with it? Hes

home now for christmas and another attack.

His sister now 20, never grew out of it and has suffered around

5 attacks a year all her life. She had 3 attacks July, August and

September, but nothing since then. She is booked in to have her

tonsils removed 29 December. I dont expect it to be 'the cure' but It

might reduced the frequency and severity.

Best wishes

Lee

England

father to

20 and Darren 18

[Guest guest]

Happy Holidays Everyone!!

Well, (sigh) here we are one day from Christmas and my 3 yr old got

her fever today...mouth ulcers and all. She had croup earlier this

month and it threw her schedule off and I just knew it...just knew it

would come for the holidays. I am due to have a house full of

people...the whole works....and everyone is so excited to see

her....they don't understand this illness so I'll no doubt have to

explain it a million times while holding her...making dinner...and

explaining that she wants nobody but me when she's sick. Wow...my

doctor still has me " tracking her fevers " so I have no medicine to

offer so she can enjoy opening her gifts. Disgusting.

The only thing that is a saving grace is her birthday is 3 days after

Christmas so we should be good fever wise for that one...It'll

probably snow 5 ft on her party day tho. Haha!!

If you don't laugh....you will cry. I am still grateful...it's a

febrile illness...she's otherwise a healthy child...there are other

children much worse in this world. I am blessed.

Enjoy the time with your families and remember...count your blessings

even though this is trying and frustrating for us all....it's doable

at its core.

Merry Christmas and Happy New Year!

[Guest guest]

Hi! I totally believe that stress is a factor. It doesn't even have

to be major stress...just last week my son (8) had a Christmas party at

school and low and behold the night before, he started a fever. I have

noticed this and brought it up to his ID Specialist, but she insists

that stress has nothing to do with the . I don't believe it. My

son had not had a fever in 9 months and when we told him we were

expecting another child, his fevers started again. They were coming

every two weeks, which was different from his once a month fevers last

year. Then he got his fever right before his Christmas party at school

and then he got one yesterday, Christmas Eve, only a week after his

last episode.

This is such a strange syndrome! Has anyone ever looked at the effects

stress has on the fevers? Someone really should do a study about

that!!!!!

Thanks for letting me vent. I hope everyone had a Happy Holidays!

Sharon

[Guest guest]

Hi Sharon

I agree fevers can definitely be set off by stress! Pre her T & A, our

daughter had weekly episodes after we brought her new brother home from

hospital. I have read about many others here on the board experiencing the same

(it's just great having a newborn and weekly fevers...!).

But we made it through, had T & A in March and not a fever since. Long may it

last!!

Best regards

Inga

[Guest guest]

Happy Holidays to all. Much like others, I feared a fever over the holidays.

Sure enough, xmas eve, Teagan woke up with a fever. I so desperately wanted her

to enjoy xmas morning and then we were to travel to Michigan (From Kentucky) to

be with our family. I gave her prednisone for only the second time and we

actually had better results. The first time we used it (week before

Thanksgiving), her fever came back the next day. This time, she was feeling

great on Xmas day and just very tired our whole trip to Michigan. She tended to

have a fever of around 99.6 which for her is no big deal. I can relate to

family not understanding though as we had a huge family party (60 people) on

Sunday and we had to drive back to Lexington afterward. We ended up leaving the

party because her temp was 99.8 and she was so whiny and unhappy. We got alot

of grief as alot of my extended family doesn't even know about her illness. I

have been using my facebook account

to educate them. Anyway, I hope every has a great New Year without any fevers!

Stacey

[Guest guest]

Hi there. DR. S only believe what they read. But we all know what our kids go

through. My son too got sick on Christmas Eve. Every year of his life it has

been the same. Christmas, thanksgiving, birthday, first day of school.

Vacation it's all the same. They react to good stress as well as bad. A dr.

once

told me that a child's temp has nothing to do with the brain. But the thamallas

s/c controls the body temp. from the brain. I think they are all crazy bless

there sweet soles. mom and dad knows best. good luck char

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[Guest guest]

Hi there. DR. S only believe what they read. But we all know what our kids go

through. My son too got sick on Christmas Eve. Every year of his life it has

been the same. Christmas, thanksgiving, birthday, first day of school.

Vacation it's all the same. They react to good stress as well as bad. A dr.

once

told me that a child's temp has nothing to do with the brain. But the thamallas

s/c controls the body temp. from the brain. I think they are all crazy bless

there sweet soles. mom and dad knows best. good luck char

**************

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