New to

[Guest guest]

I'm also new at and here in Slovenia also took us almost 3 years

to get to a specialist that threat us with real care. It is still not

diagnosed but the doctor belive it is because he was tested on

some of the rest of thes periodic fever that can be genetic proven.

Our son had the first attack at the age of 8 months and he is nearly 4

years

old. He has had episodes of fever as often as on 14 days. And I think

he also start loosing weight. His weight was normal in the 50 %, now

it is less then on the 25 %. Hes 4 and he weight less then 13 kg. I

must say that the episodes ar lately not so often (1 month) an from

the last one it was 2 months but this one is very long. He first had

fever this friday and today on sunday still have to give him

paracetamol on every 5 hours. It usually lasted 2-3 days. It's been 4

now. We are also thinking about tonsillectomy they say it is 90 %

successful.

Petra

[Guest guest]

I'm also new at and here in Slovenia also took us almost 3 years

to get to a specialist that threat us with real care. It is still not

diagnosed but the doctor belive it is because he was tested on

some of the rest of thes periodic fever that can be genetic proven.

Our son had the first attack at the age of 8 months and he is nearly 4

years

old. He has had episodes of fever as often as on 14 days. And I think

he also start loosing weight. His weight was normal in the 50 %, now

it is less then on the 25 %. Hes 4 and he weight less then 13 kg. I

must say that the episodes ar lately not so often (1 month) an from

the last one it was 2 months but this one is very long. He first had

fever this friday and today on sunday still have to give him

paracetamol on every 5 hours. It usually lasted 2-3 days. It's been 4

now. We are also thinking about tonsillectomy they say it is 90 %

successful.

Petra

[Guest guest]

I live in Brookfield, CT and have a daugthter, 5, who has been fevering since

she was 16 months old.

There are a few families on this site that live in CT and see Dr. Feder at CT

Children's Medical Center in Hartford.

Please feel free to send an e-mail to me at my home address. Look forward to

talking to you more.

Lynn Stubbe

[Guest guest]

Hi,

Thank you so much for e-mailing me. I have so many questions if you don't mind.

Has your daughter gotten worse or better as she gets older? How high are her

fevers does she have anything else as well. Do other diagnosis come about once

diagnosed with ? How do you handle shool if she has a fever?

Thank you so much for e-mailimg me. I am a little nervous about all of this.

thanks

[Guest guest]

Hi,

Thank you so much for e-mailing me. I have so many questions if you don't mind.

Has your daughter gotten worse or better as she gets older? How high are her

fevers does she have anything else as well. Do other diagnosis come about once

diagnosed with ? How do you handle shool if she has a fever?

Thank you so much for e-mailimg me. I am a little nervous about all of this.

thanks

[Guest guest]

Hello. My 4 year old was recently diagnosed with . He started getting

fevers a little after he turned 3. The pediatrician's office kept telling us the

same thing most parents have heard: it's a bad cold, it's an infection, here

take some anitbiotics (that never worked), etc. I began noticing that his fevers

were cyclical, about every 3 weeks, and he was lethargic at times during high

fevers, and he always has a croupy cough with them. Most of the time his fevers

were anywhere from 101 to 104.7, so we dosed him up with tylonol and motrin. He

has had 2 fevers at 105.8 and 106.2 that we are aware of; both time no seizures

thank goodness. Tylonol, motrin, and a wet washcloth brought them down to a

manageable number. His fevers last 3 to 4 days then disappear. The cough goes

away a few days later. He is back to normal as if nothing ever happened. Most of

the time, even during the frebile eposides he is playing and going about his

normal business.

This last fever has been hard on him. He has been lethargic the whole time,

been on the motrin and tylonol around the clock and maintaning a fever between

101.7 to 102.7 with the motrin and tylonol. After the pediatricians office kept

telling me that it was just a cold and would not look into anything else. I

started to look online for " cyclical fevers in children " . I found a huge list of

diagnosis and the only 2 things that looked close was and cyclic

neutropenia. So I went back to the pediatrician and asked for blood panel

paperwork so we could get my sons' blood drawn. We had them run a panel for

, cyclic neutropenia, anemia, respiratory and food allergies, and two other

things I don't remember what they were. The results came back positive for an

allergy to wheat. We were sent to an immunologist. The immunologist didn't

believe that the fevers were caused by the wheat allergy and sent us to a fever

specialist in San Diego. The

fever specialist agreed with the immunologist and felt that based on my son's

symtoms has atypical , mainly because he does not display the mouth sores

(that we have seen), or swollen glands. He thought it was strange that he has a

cough with each fever as that apparantly is not common.

 

Perhaps it is coincidence, but his fevers used to be every 3 weeks before we

found out he had a wheat allergy. As soon as we pulled wheat, the fevers went to

every 2 months for 2 cycles. After we saw the specialist, he prescribed a dose

of prednisolone to give during his next fever to see if it responded. It went

away within 2 hours. His next fever came back in a month and it is more intense

than any fever he has had before. We will NOT be using the steroid dose again.

Although, it was good to see that he did respond to it, so the diagnosis appears

to be more accurate. We see the specialist again in 5 months for a follow up.

 

We are considering the tonsillectomy, but still aren't sure about it. We have a

deep concern about the amount of tylonol and motrin that is going through his

body and the affects they will have on his stomach and liver. However, the

alternative is a kid in the ER, right? We are going to see a pediatric

chiropracter. My mother in law is very much into alternative healing and swears

by this. My mother isn't into it so much, but has seen it work with her own

eyes. They got me in touch with a pediatric chiropracter. There is a machine

that they use that does not crack bones, but finds where the tension is and

relieves it in a certain way. My mom has seen kids go in that have been very

sick and come out peppy. It's worth a try.

 

I've heard that this disorder does not affect development, but I wonder what

type of research has been done. How and what was measured to determine

that? That's our story. Thanks fo reading. If you have any advice or concerns,

please feel free to get back to me. Thanks.