RE: Eli Harvey and Dani Hackett

[Guest guest]

I am just returning from seeing our specialist in Atlanta today. We changed our

dosing of Prednisone last episode and confirmed it with Dr. Kobrynski (pediatric

immunologist at Emory). We were using 2 teaspoons (10 mls) for a 32 pound

2-year old. Last time, we cut down to 1 teasooon (5 mls). I'm not sure what

that calculates to on a mg/kg basis. Maybe you could convert to mls. We use

Orapred.

We have also been advised if the fever returns in 24-48 hours to give another

full dose (we will use 1 teaspoon as long as it seems to work - as Dani got very

aggressive on 2 teaspoons after her 5th episode using Prednisone.)

We are also starting a trial of Tagamet that Dr. Kobrynski has seen work for

some children. Dani's fevers have moved to every 14 - 16 days (they used to be

35-70 days prior to Prednisone). This should lengthen out the fevers.

If in 3 months the fevers have not lengthened, Dr. Kobrynski recommended having

discussions on a tonsillectomy. I forgot to ask (I don't know why?) if we will

also look at an adenoidectomy. Dani's tonsils always test negative for strep,

but the right side is red and enflammed today along with an enlarged lymph node.

We expect the fever to hit tonight.

We really have faith in Dr. Kobrynski because she has seen so many cases. We

have truly lucked out having a pediatrician (Dr. Roy Benaroch) that noticed Dani

was having lots of fevers and had already had two cases of . FYI - he

wrote a book on getting good healthcare for your children this spring and is

writing another one for late this year. I haven't read it yet, but my husband

and I refer to him as the kindler, gentler " Dr. House. " . He loves to figure out

the tough cases.

Well - in closing- welcome. This is a great source of information.

Ginger - Atlanta, GA

Daughter - le, 23 months ( since 7-12 months)

Son - Jay, 8 weeks.

~Ginger

Systems Solutions Principal, CAR Financial Services

Work: (770) 828-1397

Cell: (770) 823-2871

TREO: (404) 915-5035

Sent from my TREO; thus, please excuse any typos. (Especially with missing p's

- that key sticks!)

Eli Harvey

This is the discussion group I have been looking for

during the past year! I am so glad to find it!

My name is Jen, mother of Eli, who is now 2 1/2 years

old. After over a year and 20 fevers, we finally

have a diagnosis of . I knew something was

wrong last fall, after a summer of cyclical fevers up

to 104.5, but like many of you, our pediatricians

reassured us that it was probably just a different

virus every time. What about mother's instinct?

By last December, a fever pattern of about every 21

days was pretty well evidenced, and I kept showing my

religiously kept records to the doctors. Eli would

wake up one morning, without an appetite, and with a

predromal look in his eyes, and by afternoon he would

have a high fever. For the next 2-3 nights the fever

would spike usually up to 104. He was amazingly

absent of any other symptoms, except maybe a sore

throat and mildly enlarged lymph nodes.

On a Saturday in late December, during one of these

febrile episodes, I called the pediatrician on call.

I was not very familiar with Dr. Hinton, but when he

called back, listened to our story, and responded " I

think I know what your son has! " , I was filled with

hope. He described , something he had only

really read about, or maybe seen once or twice. He

wasn't even quite sure what all the letters stood for,

but I was elated to have someone treat our situation

as more than just a coincidental string of high

fevers.

So, Eli and I went off to an infectious disease

specialist in Phoenix. This was Dr. Barbour, who was

nice enough, but emphatically believed Eli could not

have , and discouraged me from reading so much

about periodic fevers on the internet. His reasoning

was that Eli's fevers only lasted and average of 3

days, not long enough to qualify for that diagnosis.

I whole heartedly disagreed, but took his

recommendations for a battery of other lab tests, and

a CT scan of the sinuses. We also ruled out cyclic

neutropenia, which mimicks .

Eli's fevers continued with near clock-work

predictability, and all of his lab tests were normal.

Dr. Barbour's words haunted me... " Honestly, you will

probably never figure out what this is " , " It is most

likely a recurrent virus " , and " Your child is the

healthiest one I've seen all week " . Healthy or not,

my son was spending one week out of every three ill,

and his emotional, social, and even neuromuscular

development was being effected. Not to mention that

both my husband and I work, and were struggling over

whose turn it was to stay home with our sick son so

frequently.

Finally, I sent all of Eli's records to Dr. O'Connor

at St. Louis Cardinal Glennon Children's Hospital.

This hematologist/oncologist/pediatric infectious

disease specialist had treated my brother's cancer

years and years ago when he was in grade school. Dr.

O'Conner thought that Eli could very well have ,

and suggested Prednisone for treatment. Hurray! If

nothing else, we had something to TRY.

So, about a month ago, Eli's fever came on as

predicted, and we gave him a 2mg/kg dose of

Prednisone. SH-ZAM! In one hour, Eli's fever was

completely GONE. In it's wake, he was a bit grumpier

than usual, and VERY VERY hungry. Two days later the

fever returned, although more mildly, and I gave him a

1mg/kg dose. AGain---BOOM....fever GONE COMPLETELY.

Two weeks later, his fever returned, and I gave a dose

of 1.5mg/kg, followed by half that dose on day 3 of

what would be his fever cycle. Again, he was a little

grumpier than usual, but NO FEVER AT ALL.

Now that we have a diagnosis, and a treatment that

seems to be working, I'd like to know how other

parents are administering Prednisone. Our doctor

doesn't really have any guidelines to give us, other

than to use what works. I am an RN myself, however my

specialty is adult cardiology, so while I am an

educated person, my knowledge of pediatrics is

limited.

Thank you for listening to my story, and I can't wait

to hear about all of yours.

Jen Harvey

Prescott, Arizona

caverrn@...

________________________________________________________________________________\

____

Shape in your own image. Join our Network Research Panel today!

http://surveylink./gmrs/_panel_invite.asp?a=7

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

====================================================

This message contains PRIVILEGED and CONFIDENTIAL

information that is intended only for use by the

named recipient. If you are not the named recipient,

any disclosure, dissemination, or action based on

the contents of this message is prohibited. In such

case please notify us and destroy and delete all

copies of this transmission. Thank you.

====================================================