hello

September 26, 2008

,

I am glad Tyler is doing well, how our hearts ache when the fevers hit, the pain

discomfort

and helplessness do wear on the soul. But I am very glad that the TA is making a

difference and I really hope it continues because I would never wish this stress

on any

single parent which is what essentially you will be when the hubbie is away.

Just them

being away is hard enough.

To answer your question, My son was born mar 28 her first cyclic fever was apr

12. My

son almost died in birth he was born blue and floppy he had and apgar score of

one, he

was resuscitated and put on oxygen and transfered to a NICU. For a week we

practically

had to ignore our daughter no take care of our son. She came to the hospital

daily and i

gave her all the love i could but my mind was often focused on the little boy in

the bed

warmer attached to all the monitors. when we got home in apr with joey, bc he

was in a

hospital an hr away from where we live, my mom who had stayed a month longer

than

planned left a week or so after. jazzy had to adjust to a lot but mostly i was

still very

consumed by the baby bc of his hard beginnings and than he had colic. Than a few

months

of that and her daddy left, than my mom came back bc I had a TA and than she

left again

jazzy fevered when my mom left, she also fevered after immunizations and when

she sees

her dad on the webcam a lot but than he stops and she goes without seeing him

she

fevers. She does like to be held when she fevers but it is very difficult

because joey is still

high needs so i must neglect her which breaks my heart i really am doing the

best i can

and i love when the fevers are gone and keep hoping they will stay gone just to

not make

her suffer because i feel enormous guilt that i cant just cuddle her all day. I

really hope no

one else ever has to feel that pain and guilt. but thank you for the advice i do

appreciate

it. I just dont know how to deal with it and keep the now 6 month old happy and

safe. I

have come to the realization that when shes like that i just have to try to hold

her when he

lets me and when he needs me unfortunately she has to suffer a little sometimes

cry, And

when she needs her pain meds, or whatever he has to cry for a min too. and thats

all i can

do no matter how much it hurts. On the 3 of oct i go to seattle childrens

hospital hopefully

the specialist can help us find answers maybe ways to minimize of control her

fevers. I

think the next few months will be the process of evaluating and confirming. i

look forward

to answers no matter what they will be.

September 26, 2008

,

I am glad Tyler is doing well, how our hearts ache when the fevers hit, the pain

discomfort

and helplessness do wear on the soul. But I am very glad that the TA is making a

difference and I really hope it continues because I would never wish this stress

on any

single parent which is what essentially you will be when the hubbie is away.

Just them

being away is hard enough.

To answer your question, My son was born mar 28 her first cyclic fever was apr

12. My

son almost died in birth he was born blue and floppy he had and apgar score of

one, he

was resuscitated and put on oxygen and transfered to a NICU. For a week we

practically

had to ignore our daughter no take care of our son. She came to the hospital

daily and i

gave her all the love i could but my mind was often focused on the little boy in

the bed

warmer attached to all the monitors. when we got home in apr with joey, bc he

was in a

hospital an hr away from where we live, my mom who had stayed a month longer

than

planned left a week or so after. jazzy had to adjust to a lot but mostly i was

still very

consumed by the baby bc of his hard beginnings and than he had colic. Than a few

months

of that and her daddy left, than my mom came back bc I had a TA and than she

left again

jazzy fevered when my mom left, she also fevered after immunizations and when

she sees

her dad on the webcam a lot but than he stops and she goes without seeing him

she

fevers. She does like to be held when she fevers but it is very difficult

because joey is still

high needs so i must neglect her which breaks my heart i really am doing the

best i can

and i love when the fevers are gone and keep hoping they will stay gone just to

not make

her suffer because i feel enormous guilt that i cant just cuddle her all day. I

really hope no

one else ever has to feel that pain and guilt. but thank you for the advice i do

appreciate

it. I just dont know how to deal with it and keep the now 6 month old happy and

safe. I

have come to the realization that when shes like that i just have to try to hold

her when he

lets me and when he needs me unfortunately she has to suffer a little sometimes

cry, And

when she needs her pain meds, or whatever he has to cry for a min too. and thats

all i can

do no matter how much it hurts. On the 3 of oct i go to seattle childrens

hospital hopefully

the specialist can help us find answers maybe ways to minimize of control her

fevers. I

think the next few months will be the process of evaluating and confirming. i

look forward

to answers no matter what they will be.

September 26, 2008

,

I am glad Tyler is doing well, how our hearts ache when the fevers hit, the pain

discomfort

and helplessness do wear on the soul. But I am very glad that the TA is making a

difference and I really hope it continues because I would never wish this stress

on any

single parent which is what essentially you will be when the hubbie is away.

Just them

being away is hard enough.

To answer your question, My son was born mar 28 her first cyclic fever was apr

12. My

son almost died in birth he was born blue and floppy he had and apgar score of

one, he

was resuscitated and put on oxygen and transfered to a NICU. For a week we

practically

had to ignore our daughter no take care of our son. She came to the hospital

daily and i

gave her all the love i could but my mind was often focused on the little boy in

the bed

warmer attached to all the monitors. when we got home in apr with joey, bc he

was in a

hospital an hr away from where we live, my mom who had stayed a month longer

than

planned left a week or so after. jazzy had to adjust to a lot but mostly i was

still very

consumed by the baby bc of his hard beginnings and than he had colic. Than a few

months

of that and her daddy left, than my mom came back bc I had a TA and than she

left again

jazzy fevered when my mom left, she also fevered after immunizations and when

she sees

her dad on the webcam a lot but than he stops and she goes without seeing him

she

fevers. She does like to be held when she fevers but it is very difficult

because joey is still

high needs so i must neglect her which breaks my heart i really am doing the

best i can

and i love when the fevers are gone and keep hoping they will stay gone just to

not make

her suffer because i feel enormous guilt that i cant just cuddle her all day. I

really hope no

one else ever has to feel that pain and guilt. but thank you for the advice i do

appreciate

it. I just dont know how to deal with it and keep the now 6 month old happy and

safe. I

have come to the realization that when shes like that i just have to try to hold

her when he

lets me and when he needs me unfortunately she has to suffer a little sometimes

cry, And

when she needs her pain meds, or whatever he has to cry for a min too. and thats

all i can

do no matter how much it hurts. On the 3 of oct i go to seattle childrens

hospital hopefully

the specialist can help us find answers maybe ways to minimize of control her

fevers. I

think the next few months will be the process of evaluating and confirming. i

look forward

to answers no matter what they will be.

October 8, 2008

During one of our son's episodes his white count was at 24,000 with nothing

found in blood or urine samples. The MD we saw at the time had him get an

antibiotic injection just to be sure because the count was unusually high.

Are your son's fevers on a cyclic/predictable pattern or are they random? We

had to keep a written record of them for the MD's to get moving past the usual,

" oh, it's just virus exposure and normal for children " . Our son used to fever

every 2 weeks. We had to search to find Doctor's who were willing to look

beyond what is 'normal'. It sounds like you are finally get on that path also.

If you haven't started to already keep a record of the fevers, when and how

severe they are. I just wrote them on our regular wall calendar and then either

took that in to the MD or rewrote it on another form before the appt.

I hope you discover what is causing your son's fevers. With it is a

diagnosis by exclusion. There is not a known genetic marker for it at this

time. So usually they have the child tested for other conditions that can cause

similar symptoms that there are known DNA markers for, as well as other tests

like cyclic neutropenia and others. It is a long road, and often exhausting and

frustrating. To not know what is hurting your child and if there is a way to

make it stop becomes very frustrating when you just want to make it better for

them.

Hang in there, it sounds like you are on the right path to getting answers.

Just be persistent with the MD's and keep a record.

I hope you son is feeling better.

Pruden

Tyler Pruden 2yr 9mo old fevered since 3mo - T & A 8/5/08 skipped 5 fevers so far!

Dylan Pruden 7mo old

October 8, 2008

Sorry by the way my name is and I live in NM. I posted about

my son who has had this for four years.

October 9, 2008

His fevers are every month and last 3-4 days. They are refering us to a

specialist in the city from infectious disease since they are considered the

experts on fevers. I hope your son continues to skip his fevers. My son has

had the fevers four years now but we hope the stop soon, or we find more answers

on what to do when he has them. He doesnt like to eat or drink, prefers to

sleep since he is so hot and miserable so we have to fight to keep him with

fluids. Its hard to see him like that and the only thing I can do is give

tylenol and wipe him down. I guess I would take this easier if there was a known

cause, something I can say " okay that is why he is having these high fevers " but

I cant and so I feel even more helpless

mother of Angel (Spanish) who will be 6 in one week and he has had the fever

4years.

October 9, 2008