Our Story

[Guest guest]

Our 25 month old son, Kurtis, has been having recurrent fevers every three weeks

like clockwork since mid July.  Today is the sixth day of the seventh episode.

 It starts on Wednesday with him being very tired and fussy and his appetite

decreasing.  By Thursday night he has a fever that at times has been over 105

degrees, swollen glands in his neck, and he quits eating altogether (thankfully,

he does keep drinking).  He only weighs 23 pounds.  At least one of the times,

he had ulcers on his tongue and more than once he has complained about his legs

and neck hurting.  His fever usually lasts until Tuesday and then he is fine for

two full weeks before it starts all over again.

 

He has seen his regular pediatrician several times and he keeps telling us it is

just a virus and that it's not uncommon for a child his age who goes to daycare.

 He even told me that there was no sense in doing blood work because it wouldn't

show anything.

 

On November 2, 2008, we took him to the ER.  They did blood work (CBC), a blood

culture, nasal swabs, a throat culture, and a chest x-ray.  All of the tests

were normal, except his white count was slightly elevated (which they said was

normal for a child fighting an illness) and they saw what they thought could

possibly be pneumonia on his chest x-ray, but they said they couldn¢t be

certain.  In the end, they gave him an antibiotic through his IV and sent us

home with a prescription for Omnicef, which he took for 10 days, ending

Wednesday, November 12th.  One week later, it started all over again.

 

We decided to try a new pediatrician.  So, this past Thursday, November 20th, we

took him to see a new doctor.  She seem to recognize that is was a cycle and

ordered blood work to be done on December 1st, before the next cycle begins. 

 

Friday, November 21st, there was a story that aired on our local news about a

little girl in Boston that had recurring fevers every 25 days.  Her father is an

ENT at Boston Childrens' Hospital.  He did his own research on  and ended

up removing his daughter's tonsils and adenoids and she has been fever free for

over 4 years.

 

I immediately called the new doctor's office, where the nurse I spoke with said

that she had seen the story and thought of our son too.  She relayed the info to

the doctor and later called me to say that the doctor didn't think there was a

connection.  I asked " Why? " .  About five minutes later the doctor called me (she

was very angry) and told me that I research too much and the reason she didn't

think there was a connection was because the little girl had seizures and my son

did not.  She did reluctantly agree to call the TV station to try to get more

information, however, when she called again she still maintained that there was

no connection.

 

Thankfully, I had the news report recorded and when I got home from work Friday

evening I watched it over and over again.  I got online and " googled " the

doctor's name and found article upon article about .  I had never heard of

this before, but the information I read described what we have been going

through almost exactly.

 

Desperate to find someone to listen , I sent a fax to this doctor in Boston this

morning.  I spoke with one of his nurses this afternoon and she told me the

doctor was out of the office today, but she assured me that someone would be in

contact by the end of the week to let us know what to do next.

 

While we know that it is possible that he doesn't have , we feel like there

is hope for the first time in months.  Finally someone is listening.  Someone

who doesn't think we are overreacting. 

 

We feel like seeing that story on our local news was the sign from God that we

have been praying for.  And, when it comes to our children's well being, there

is no such thing as " researching too much " !!!

 

Thank you accepting us into this group and thank you for reading our story!

 

The Liegey Family (Bob, Janine, , and Kurtis)