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[Guest guest]

8/19/08

Hi,

My name is Laurie Barrett. I am a 35 year old mother of 2 boys(ages 6 & 3),who

is so incredibly happy to find this group! I have been a pediatric nurse at All

Children's Hospital in St. sburg Florida for 12 years. My specialty has

been hematology,oncology,bone marrow transplant. Our rollercoaster began about

2 years ago with our youngest son. He went from being a child who was very

rarely sick to one that almost constantly was ill. He would go from being fine

to having fevers as high as 105.7 axillary. His fevers would persist for days

and rarely come down under 101 even with tylenol and motrin being alternated

every 3 hours for days. He could spike to over 105 in as little as 15 minutes.

Then they would stop just as fast as they had started after 5-7 days. He has

had uncomplicated febrile seizures twice. He would be lethargic, blue, horrible

chills for days and then all of a sudden completely fine. During the episodes

he sometimes got sores in his mouth, pharyngitis, huge cervical lymphnodes, and

vomitted when fevers were very high. For 2 years we have been told it was

viral, ear infections (he has had tubes placed twice now - neither of which

solved the problem of the fevers), and then probable sinus problems and maybe

infected adenoids. Our ENT is wonderful (Dr. Wade Cressman). We have cultured

Aiden's sinus' twice and treated him with antibiotics post op, as well as taken

out his adenoids which were enlarged but not aweful. Still the fevers

persisted. The are not like clockwork which has made this even more

frustrating. He may go a month or so with none and then get them for seven

days, be better for seven days and then get them again for 8 days- and that too

would go on for months. Around christmas he started having eye swelling with

the fevers (just one eye)- this happened on 3 different occasions. A

pediatrician informed me I should take him out of daycare and that would solve

all of the problems. So I quit my job and took him out of daycare, still the

fevers continued. His fever continued for 12 days before stopping suddenly.

His sinus films were negative and we were reffered to Dr. Mandel Sher for

further testing (by the ENT and our pediatrician)- who now believes he has an

atypical case of . In July we gave him 1 dose of prednisone at the onset

of his fever. Within 12 hours his fever was completely gone! Three weeks later

he had another fever which also completely resolved after one dose of the pred.

Yesterday (4 weeks later) he spiked again, and again the prednisone wiped out

the fever. Hallellulia!! We have a follow up appt. on thursday with Dr. Sher.

I have spoken to his ENT who has agreed to take his tonsels out based on some

literature I found about syndrome. The nurse at Dr. Sher's office however

when I called for their input stated to me that " Dr. Sher doesn't know why I am

taking his tonsels out " . Any input on whether a tonselectomy has worked for

anyone is greatly appreciated! This has been an exhausing, frustrating

experience! I am happy to find some people who understand what it is like!

Thanks in advance for any info you can share!

Sincerely,

Laurie Barrett

Seminole, Florida