Re: Need to step up treatment, diagnosis LONG

December 12, 2006

The cimetidine (sp?) worked wonders on our son Jens for 3 months-- not

a single fever

after 10 months of fevers every 14 days. Then it just stopped working

all together.

So we are back to fevers ever 10-12 days. The cimetidine is given

every day, in our

case we gave it in the morning and the night. Our immunologist said

it works in

30% to 40% of the cases she's seen.

The steroid knocks the fevers out within hours of their onset. It is,

for our Jens,

a mircle drug. That said, we don't give it to him every time he has a

fever

because we were told to use it conservatively. Also our concern that it

Could cause the fevers to be closer together. Prednisone is the

steroid we

have for Jens.

Kathy

>

> Hello, I've been a silent member here for a couple years. Our son,

> , was diagnosed with having Periodic Fevers just over two years

> ago - he started having them when he was 27 months and he's now

> nearly 5. He had a couple blood tests done - nothing too crazy.

> And we've been treating his fevers wtih motrin and tylenol - I can't

> begin to count how much money we've put into those medicines! We

> felt that when he started school, we'd look into alternative methods

> of treatment.

>

> will start Kindergarten next fall and I am preparing to go to

> battle for him. I am not sure how our elementary school will feel

> about his syndrome and I feel that if we're going to alter our

> treatment, we need to figure it out well before school starts for

> him. He is in preschool three afternoons a week and he's already

> missed so much school - he's in a cycle where he starts his fevers

> on Sundays and they linger until late Tuesday usually. They vary

> between 3-6 weeks apart - He's been on a 3 week cycle lately. The

> severity also varies widely. The past several episodes have been

> very mild, but he's in one currently that is more powerful and

> aggressive than we've seen in a long while.

>

> I know that steroids are one alternative treatment. is tiny

> for his age already and somehow we've made an assumption that using

> them would be further growth altering for . I've read that

> sometime the steroid makes the fevers worse - closer together. Is

> it worth trying despite these side effects and possibilities? I've

> also heard of treating with cimetedine, pardon my spelling. How

> does that compare with the steroids? Is it a steroid? I read about

> each of these two years ago when we first started this journey. Are

> there any new treatments? I saw something about Singulair. What is

> the connection to that and for which kids does it work?

>

> As I said earlier, we had some basic blood tests early on. Enough

> to rule out a few basic diseases and to check blood counts and

> things that are really over my head. I know the blood test was

> taken toward the end of an episode, and then another was taken a

> couple days after that completely out of an episode - I think to

> compare to the first draw. Is that timing ok? Should I push for

> further blood tests, perhaps at the onset or height of an episode?

> All that we determined was that he had 'Periodic Fever Syndrome'. I

> know there are lots of variations within this family. Does the

> treatment vary for specific types?

>

> I've watched suffer for 2.5 years and if there are truly

> methods that could improve his quality of life, I think I'm ready to

> look into them. This episode has been so hard on him. And I want

> him to be able to optimize his educational experience.

>

> We're in the Chicago area if you have any recommendations for

> specific doctors or clinics to visit. We've already made a few

> rounds to specialists.

>

> Thanks,

> mom to

> (4.5 Periodic Fever Syndrome)

> Katelyn (6)

> (8 mo)

>

December 12, 2006

Go see an ENT. T & A removal. It has worked wonders for us.

thedavids10 <thedavids10@...> wrote: Hello, I've been a silent

member here for a couple years. Our son,

, was diagnosed with having Periodic Fevers just over two years

ago - he started having them when he was 27 months and he's now

nearly 5. He had a couple blood tests done - nothing too crazy.

And we've been treating his fevers wtih motrin and tylenol - I can't

begin to count how much money we've put into those medicines! We

felt that when he started school, we'd look into alternative methods

of treatment.

will start Kindergarten next fall and I am preparing to go to

battle for him. I am not sure how our elementary school will feel

about his syndrome and I feel that if we're going to alter our

treatment, we need to figure it out well before school starts for

him. He is in preschool three afternoons a week and he's already

missed so much school - he's in a cycle where he starts his fevers

on Sundays and they linger until late Tuesday usually. They vary

between 3-6 weeks apart - He's been on a 3 week cycle lately. The

severity also varies widely. The past several episodes have been

very mild, but he's in one currently that is more powerful and

aggressive than we've seen in a long while.

I know that steroids are one alternative treatment. is tiny

for his age already and somehow we've made an assumption that using

them would be further growth altering for . I've read that

sometime the steroid makes the fevers worse - closer together. Is

it worth trying despite these side effects and possibilities? I've

also heard of treating with cimetedine, pardon my spelling. How

does that compare with the steroids? Is it a steroid? I read about

each of these two years ago when we first started this journey. Are

there any new treatments? I saw something about Singulair. What is

the connection to that and for which kids does it work?

As I said earlier, we had some basic blood tests early on. Enough

to rule out a few basic diseases and to check blood counts and

things that are really over my head. I know the blood test was

taken toward the end of an episode, and then another was taken a

couple days after that completely out of an episode - I think to

compare to the first draw. Is that timing ok? Should I push for

further blood tests, perhaps at the onset or height of an episode?

All that we determined was that he had 'Periodic Fever Syndrome'. I

know there are lots of variations within this family. Does the

treatment vary for specific types?

I've watched suffer for 2.5 years and if there are truly

methods that could improve his quality of life, I think I'm ready to

look into them. This episode has been so hard on him. And I want

him to be able to optimize his educational experience.

We're in the Chicago area if you have any recommendations for

specific doctors or clinics to visit. We've already made a few

rounds to specialists.

Thanks,

mom to

(4.5 Periodic Fever Syndrome)

Katelyn (6)

(8 mo)

December 14, 2006

Hi -

I just wanted to say hi, I'm sorry I don't have all of the answers for you. You

actually have asked all of the same questions that I have. My son is 5

(Spencer). He was diagnosed at Children's Memorial in Chicago at the Infectious

Disease Dept a few weeks ago, sorry I don't know the Dr's name. We live just

south of Joliet,IL. (I saw you live around here, too) Anyway, the doctors there

did not reccomend the steroids. They did say that it would bring the fevers

closer together making them @ every 2 weeks instead of4-6wks. They did say that

if we had to use them, use them sparingly- like if we were on our way to Disney

World or something. I am also very concerned about him missing too much school-

he's in kindergarten now. The only bloodwork we had done were CBC's and mono

screenings. His white blood count was kind of high each time. Sorry, I don't

know much about the singulair or any of the other drugs everyone keeps

mentioning. I too will be watching responses from

others. I guess we will learn together. Good luck with , it's no fun

having a sick kid all the time, let's just hope they outgrow it soon!!!

Becky- Spencer's Mom

thedavids10 <thedavids10@...> wrote:

Hello, I've been a silent member here for a couple years. Our son,