Introduction email for aimichka

September 15, 2007

Hi and thank you for welcoming me to the group. It has taken me a long time to

get this email written and I am doubtful that I'll get it completed in one

sitting.

My husband and I have two wonderful little girls. The first is the healthiest

thing on the planet!. She has had 3 fevers in her 4 1/2 years and each was

quickly diagnosed. Our youngest has been much more of a health challenge. When

I was pregnant with her, I ended up on bed rest at week 24 for pre-term labor.

She held on though and didn't come until her due date. The delivery was

uneventful other than she didn't really want to come out and she was posterior.

She had no immediate health problems and she has grown and developed exactly as

a parent would hope. She did have reflux and was on medication for that until

she was about 8 months old, but other than that, seemed very healthy and strong.

Unfortunately we were awoken one night when she was five months old to her

having a seizure. We spent hours and hours and the Children's Hospital in

Detroit only to be sent home and told that some kids with reflux will seize. We

didn't really buy it but

didn't have anything to argue with them on. A week later- now in Utah- she had

another seizure. We took her back to the hospital and they got us in with a

pediatric neurologist. Dr Benedict is fantastic and she ran some test, did an

MRI and put Ivy (our daughter) on Phenobarbital (Sp?). She has had several

break-through episodes but not full blown seizures since so her dosage has been

adjusted. The week before her birthday and right before New Year's Eve, she

came down with croup. She also had a fever but the doctor didn't seem to mind

much- didn't even look in her ears. It was time for her 1 year well-baby visit

and she still had a low-grade fever. Come to find out, she had a double ear

infection. They started her on antibiotics and that night her fever spiked to

104. I called the doctor the next morning and was told to wait 48 hours for the

antibiotic to work. The next day her hands, feet and face turned a dark purple.

We took her to the

ER and by the time they were able to see her she was pink again. Once the

purple went away, her fever climbed to 106- of course this was after we left

the ER. Over the course of the next two weeks, she would turn purple multiple

times- whether she was spiking or not. We were back at the doctor the next day

and she still had the ear infections so they changed her antibiotic. The fever

spiked again that night so we were back at the doctor on Friday. This time the

ears were clear and her fever remained at 103.5. Finally they started to take

us seriously. A number of test were run and everything but her blood came back

normal and her blood levels were just a little out of line. They said wait.

Now, 9 months later we have had a SAT monitor at home to see what is going on

when she is purple. The purple episodes now only happen when she's fevering and

a day or two after her episodes. We go anywhere from one week to six weeks in

between episodes. She has been on tagament now for 4 months. The episodes

definitely got farther apart with it but they typically remain as severe. She

always gets up to at least 105.5 a couple of times during an episode. We will

alternate Tylenol and Ibuprofen (at our house it's called " Ivy-profen " ; since

our daughter's name is Ivy and that's what our 4 year old thought it was).

Tylenol does nothing for her fever but keeps her a little more comfortable.

Since she is only 21 months, we don't know what's hurting her. She always

points to her toe but we aren't really trusting her quite yet.

We have had a full body CT Scan, Echo, EKG, EEG, X-rays, Genetic Testing,

multiple urine cultures and blood work done with almost every episode, but the

last 4 episodes, the doctors have said to just keep a journal and we'll review

it in a few months. Her last episode was almost a week long and the doctor

simply said, " if there aren't any new symptoms, we know what it is so there is

no reason to come in " . Her blood work is the only thing that ever comes back

out of line- her SED rate etc.

It's been just shy of three weeks since her last episode and she's started again

today. We're extremely frustrated and don't feel resolved that we have the

right diagnosis. She has no mouth sores- ever, no swollen tonsils or glands-

ever, no pattern to her fevers, but she does have a fever every couple of weeks

or so. I have great confidence in her doctors up at Primary Children's

Hospital, but I'm feeling as if the sort of threw in the tool and said that if

they couldn't really diagnose it, then it must be .

I hope that I will learn something in this group that may help me ask the right

questions, or few the correct patterns.

Thanks again for letting me be a part of this group.

Amy-

Mother of Jade 4 1/2 and fever free

and Ivy 1 1/2 diagnosed with

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September 16, 2007

Hi Amy,

I have a bit of understanding as to what you are going

through. My oldest is also healthy and I had tons of

problems with my youngest from pregnancy on. We have

seen every specialist known b/c Josh has had multiple

issues. My thoughts and prayers are with you and your

family during this difficult time. I pray

specifically for God to bless all of the families on

this message board with peace that surpasses all

understanding!

My son was recently diagnosed with after many

fever episodes. He also has a neurological condition

and we were not sure if the fevers were related to

that. Josh is on Singulair (thanks to the info from

this group) but it is too soon to tell if this will

help.

Welcome to the board! Thanks for your story.

Jen

September 16, 2007

Hi Amy

It sounds like you've had a really tough time with Ivy, I feel for you! I don't

know about the turning purple etc, but one thing I recently read in a study is

that a lot of kids get the fever as the only symptom and the fevers come

regularly but not always in a predictable pattern. Our little girl Emma (2 yrs)

also only gets the fever. Joint pain in her right knee and swollen lymph nodes

in her neck are new symptoms since about a month or so. We use prednisone and it

works very well but has brought her episodes closer together. We're now on 2.5

or 3.5 week cycles. My ped rheumatologist also says that the mouth sores etc can

show up only later in their lives.

I always doubted the diagnosis because we aren't getting the symptoms a

lot of the other kids on this board get. But having read the study and having

been rassured by our doctor I am now more certain than ever that it is .

I don't know if that helps at all.

Take care

Inga

September 16, 2007