Introducing ny (27 mo. old)

[Guest guest]

Hi, everyone. My name is Kathy Pesavento. Our son, ny, who is

27 months old, was just " diagnosed " with by a pediatric

rheumatologist on Friday. I got on the internet as soon as we got

home to do some research and found this group on-line. What a great

idea to connect all of us going through this same horrible ordeal.

We'll here is our story...

ny did not have the easiest time coming into this world on July

7, 2002. He was 5 weeks premature (an emergency c-section because

of a placenta previa/abruption) and spent 6 days in the NICU for

respiratory distress, 2 holes in his heart, a deviated septum and

jaundice…all of which have resolved. Soon after birth he developed

colic (which I still question—he just grunted/moaned during a very

restless sleep, but no constant crying) and soon after was diagnosed

with GERD (reflux) and started taking Zantac regularly until the age

of 12 months).

At the age of 7 months, he began to get " these fevers " with no other

symptoms that we could relate them to, like the flu or a cold. The

only other symptoms he had were lethargy, total loss of appetite

(and thirst) with gagging during eating and occasional vomiting, and

all he wanted was to be held and cuddled. Also, he would get really

pale (with dark circles under his eyes) and his big, beautiful,

brown eyes would only be half open. His temp would range from 102-

103 during the day and would spike high (in the 104's) during the

middle of the night, to the point that I made him sleep in our bed

so I could constantly feel him to know when his fever would

skyrocket. Then, I would force Pedialyte on him (which he wanted

nothing to do with), put cold compresses on his forehead, and when

he was really bad, put him in a cool tub. Initially, his

pediatrician said it was viral and told me to give him Tylenol every

4-6 hours, which I did without fail. Right before his temp spikes

he gets the chills. Then, his head and neck are like fire, but his

hands and feet are ice cold.

Well, it wasn't very long before my husband and I realized that this

was happening every month (every 3-4 weeks like clockwork). After a

few episodes, the pediatrician, still thinking this was something

viral and that fever management was all we could do, told me to

alternate Tylenol and Motrin every 3 hours, so he would always have

some active medication in his system. That helped more than Tylenol

alone, but if were were late with a dose…watch out! He would spike

very quickly, even during the daytime. Unfortunatley, his fever

spikes are getting a little higher each episode. He topped out at

105.3 so far.

Each of the fevers lasts about 3-4 days, but he isn't himself for a

whole week. He usually becomes cranky with a loss of appetite 1-2

days on the front and back end. And, oddly the last day of

the " fever " his temp drops really low to 95-97 and he feels like an

ice cube…and there's nothing I can do to warm him up. The

following day, he typically has one what I call " fever poop "

(diarrhea-like) and that's it…it's over, until the next episode.

These episodes started in Feb. '03 and lasted 9 months until,

thankfully, in Oct. `03 they suddenly stopped. That was just in

time because I was admitted to the hospital for a whole month on

strict bedrest before our daughter, a, was born on Nov. 5. I

was so nervous that ny would get a fever while I was in the

hospital and that I wouldn't be there to take care of him (not that

I don't trust my husband, but it's a mother thing). But, we got

lucky. He lost quite a bit of weight during this whole ordeal,

going from the 50% to the 20% in weight within this 9 month period.

This remission lasted 10 months and gave me a chance to " bulk " him

up again (he finally got back up to the 45%--!). Then at the

end this past Aug. it started all over again, only this time the

fevers are occurring every 2½ weeks! With a frequency like this, it

just barely gives us a chance to recharge from the last fever and

catch up on eating before the next episode starts. Fortunately, one

episode happened just before we were going on vacation and I rushed

him to the pediatrician to see if, by chance, there was anything

else going on (we hadn't yet realized that the " regular fevers "

started again). Our regular pediatrician wasn't available and the

doctor we saw ran some bloodwork. ny's sedementation rate was

high (60-- normal is 15 or less) and his white cells were only

slightly elevated. After doing a urinalysis and a chest XRay the

doc said that there was some sort of inflammatory process going on,

but not in the " usual places " and with a fever history like ny

had, the doc recommended we see a pediatric rheumatologist. While

waiting to see this specialist at Children's Hospital (in

Washington, DC), he had another episode, again with a high sed rate

(this time 52) and slight anemia this time. The pediatrician ran a

series of blood tests that he thought the rheumatologist might find

useful.

Well, within 5 minutes of meeting with the rheumatologist and

telling her of ny's detailed medical history, she was fairly

certain that he has , but obviously this is diagnosed by ruling

out other possible diseases, which we haen't done. She prescribed

him Naprosyn twice a day instead of (Motrin and Tylenol, although

Tylenol could still be used in conjunction with the Naprosyn, if

needed). She also prescribed him Zantac to coat his stomach, as the

Naprosyn is much harsher on the stomach than Motrin. She did

mention steroids as a last alternative, which I hope we don't have

to resort to, but did also mention that they decrease the frequency

of episodes in half, which would be pretty difficult since he's

getting them every 2½ weeks as it is. So, now…we're just waiting

for that next episode to happen, which is due during our first

family trip to Disney World. I'm just keeping my fingers crossed

that it will hold off!

So, now after doing some research and reading many of your stories

(thank you so much, everyone for sharing them), I have several

questions:

I see that a lot of you have had success when giving your kids

Cimetidine, which is Zantac (or Tagamet). Our son was taking Zantac

during the time he began this fever syndrome, which obviously didn't

help to resolve the fevers. Actually, he went into remission 3

months after stopping the Zantac (when his reflux resolved). Were

any of you kids on Zantac before or during the initial

episodes? Did any of your kids have reflux?

Was anyone prescribed Naprosyn? Did it help?

I am trying to see if ny's traumatic birth had anything to do

with this. Were any of your kids in similar situations, where your

children were preemies? He also has been delayed with his

developmental milestones (ie. crawling, walking, speeking) and has

been getting therapy for that (PT, OT and Speech). He is very

intelligent, though, just a bit behind the other kids his age.

Anyone with a similar situation?

For any of your kids who have had remissions, did they have any

fevers (single-episodes) during that time? If so, were they

triggered by anything, ie. traveling, change of climate, etc?

ny had a few high fevers during his remission that were

triggered by a change in his routine/ environment, usually right

after we got back from visiting my husband's family in

Pennsylvania. They were like clockwork, too…two days after we would

return home.

And, lastly…(I'm so sorry for rambling on)…during your kids fevers,

do any of you notice a difference between the temp taken in

different parts of the body? Typically, rectal temp is supposed to

be the most accurate, but oddly enough, ny's rectal temp is

typically much lower than his ear temp (only with these episodic

fevers). He could be on fire (like 105) and his rectal temp could

read like 100. It's very weird. I usually check both ear and

rectal and use my own judgment as to what his temp is. Have any of

you had similar experiences??

I thank you all in advance for any insight you could give us. I

didn't mean to be so verbose, but it's so nice to find people to

talk to who actually would understand what I'm talking about and

might shed some more light on this strange thing we're (all) going

through. Again, thanks to you all for sharing your stories…I think

now that I've found others to communicate to I won't feel like I'm

at the edge of my rope anymore.

Good luck to you all,

Kathy

Mom to ny (27 months old)- Vienna, Virginia