I'm wondering if anyone has any insight into this kind of situation. I have 18 month old twins, a boy and a girl. My little boy has been having high fevers (104-105) once or twince a month since he was about 4 months old. I've had him in to the ER, where they did bloodwork and chest xray - nothing. The doctor always checks his ears, chest, etc...never anything. I suspect it's not usually a virus, because his twin sister, who shares *everything* with him, has never, ever had a fever. His fevers always resolve within four or five days, and he rarely has other symptoms, except vomitting during the night when his fever spikes. And he never really seems all that sick, except when his fever is at its highest, and he feels rotten. The doctor now thinks he is just super-sensitive, and that this is often a reaction to teething. I worry that it might be an indicator of some problem no one has thought of (though I know that's kind of paranoid). Does anyone have experience with this, or any thoughts on what might be causing these fevers? Any help would be most appreciated!
Having one grandaughter of 19months with health problems is bad enough, but to be coping with twins when one is poorly must be awful for you.
You say your son has no other symtpoms but he gets the temperature on a regular basis... Does he feed normally? For example, does he go off his food etc just before the fever, or any other problems like this? Does he empty his bowels normally, or does he get constipate around this time as well?
The reason why I have asked about feeding is this. It is very common in babies to suffer with some degree of reflux. In prem babies it is even more common, and a lot of twins are born early.
Another reason why I asked this is, most reflux babies are worse when they are teething. Not all babies with reflux vomit, there is silent reflux. This quite often goes undetected because they appear quite well with no sign of vomiting or just on rare occasions.
If it is reflux (which I hope it isn't, but most grow out of this), then the temperature could be a sign of an inflamed oesophagus. Have you ever noticed any bright red or coffee granules in his vomit?
You could try this to see if it makes any difference, not just when his ill, try to do this for a few weeks and see if he still gets the temperature if you can't see a doctor.
Prop up his cot so that there is less pressure on his lower oesophageal sphincter (muscle at the top of his stomach), try not to let him lay down for at least 30 minutes after a feed, longer if you can. Avoid giving him chocolate and anything too spicy or fatty.
I'll check back now and again to see if it helped your son or not. Good luck
I'm not sure if this will help you. I have a 2 1/2 year old boy and he gets high fevers about every 22 - 28 days. the fevers usually run about 103.5 - 105.5. He was finally diagnosed with periodic fever syndrome. we had to go to an infectious disease doctor to get this diagnosed. The pediatricians just told me not to worry so much. good luck
Hi, [removed] What you describe is typical in kids with periodic fever syndrome.
My daughter has fever about once a month for 5 years with no other symptoms. They've done every test imaginable and now they suspect Hyper Igd, which is a form of perodic fever syndrome. To complicate the matter my daughter must be seen by a doctor for every fever because she has had her spleen removed for a blood disorder problem. Her fevers get quite high and she might not be able to continue with school soon because they last for about 3-5 days and you can't miss so much school. I know how hard it is.
Last edited by Moderator BAC; 06-04-2004 at 06:25 AM.
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Hi Pamdniki! My son Paul has had periodic fevers since he was 6 months old. After many years of dealing with it, he was finally diagnosed with a rare genetic disorder at age 9! There are some periodic fevers [removed] that a child can out grow, but there are others, that are very similiar that a child will never outgrow and can be eventually be fatal if not treated. I don't want to scare you but doctors find it so easy to blow parents off as worry warts, when you know something is wrong!
My son has one of those disorders that must be treated and he is ok now but will be on medication for the rest of his life to prevent kidney and liver damage. Dont give up and just accept the diagnosis of periodic fever! Please have your doctor do the genetic testing to make sure it's not one of genetic disorders. Another person replying to your message mentioned Hids, that is one of the rarest, only about 200 people in the WORLD have it, but it does happen! The other possible genetic disorders that they need to test for are TRAPs and FMF. My son's father and I do not have the Mediterranean background but my son wound up with a diagnosis for Familial Mediterranean Fever.
If your child definitely winds up with the PFAPA diagnosis that he will outgrow, that is great, but please make sure that that is what it actually is before accepting what your doctor tells when he says, it's just a periodic fever and it'll go away on it's own! Good luck! Pat
Last edited by Moderator BAC; 06-04-2004 at 06:24 AM.
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I just read your post and I was excited to find someone who has been going through what we have. I would love to talke more and see if you can help us. My daughters fevers started several years ago that we can remember. They happen once a month about every 32-36 days. They get very high. She had no other symptoms. We have to take her to the hospital everytime because she has had her spleen removed. We spend 3-4 days in the hospital every month. My docotor is pretty confindent that she had HIDS but is going to test for FMF and TRAPS this month. Her white count is always very high when she gets fever and her CRP is elevated. Her IgA is elevated too.
Just in the past 3 weeks she has been complaining about her knees hurting alittle. We've seen a genetics doctor, rhuematoid, infectious disease and her hematologist. If you can think of any specific test we should get done, please let me know. I would appreciate any information. All they've been able to tell us for sure is that it is a form of periodic fever.
Thank you so much. [removed]
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Hi Tracy, It sounds like your doctor is on the right track with the genetic testing. We had my sons done at the National Institutes of Health in Maryland. There is a doctor there by the name of Daniel Kastner who is a wonderful resource for any physician who needs help in making a diagnosis. We are part of a clinical study on periodic fevers there so all treatment and testing is done for my son by NIH.
I belong to a periodic fever group on line and you would not believe the horror stories parents tell of what they have had to go through in not only dealing with the periodic fevers but in finding doctors willing to take the challenge to help them get a diagnosis for the kids. So little is known about periodic fevers and so few doctors can really help. You are one of the lucky ones!
How old is your daughter? Why did she have her spleen removed? My son started with irregular unexplained fevers at age 6 months, progressed to very regular (every 28 days) starting at age 5 every month til he was finally diagnosed at age 9. The temps go up to 105, last about 3 days accompanied by severe fatigue, nausea and vomiting, stomache and chest pain, and joint pain. He is currently on Colchicine, which when he is on the right dose, almost completely erases the episodes. The Colchicine ONLY works for FMF, other drugs are preferred for the different fevers. I would be happy to answer any questions!!
We have spent a year trying to get a doctor to help us and not I have a hematlogist helping us but unfortunetly this is not his field and we are figureing this out together with no real luck yet. My daughter had her spleen removed this past Oct. because she has Heriditary Spherocytosis. She required several blood transfusions last year and that has stoped since removing her spleen. The problem is every time she gets fever she's supposed to go to the hospital for blood cultures because if it's a infection in her blood stream it could be fatal in a few hours. So with this regular fever thing happening we end up at the hospital every month. Maddie doesn't get pain with hers, sometimes she says her legs hurt and she says she has "balls" in her feet. I don't know exactly what that means. She just turned 5. I'm desperate for any advice you can give us and what exact testing you can suggest. I know some of the "fever" disorders don't have clear test to do.
How does your son go to school with this fever every month or is the medicine working that well?
Thank you so much for writing back.
Hi Tracy, the testing that I was referring to is the genetic testing that your doctor is already doing, testing for FMF, HiDs, and Traps. Those are the main genetic fever disorders and there are different variations of at least the FMF, I'm not sure about the others.
As far as school is concerned (we're in Virginia) almost any doctor who knew my sons history was willing to write a letter to the school to briefly explain the situation, and let them know that he would be missing alot of school due to medical reasons. Our kids are only allowed to miss so many days of school per year but those days are pretty unlimited for a medical condition such as this. Most school districts have exemptions to the rules! I'll bet that if you talk to your school principal, along with providing a letter from your doctor, they could work out a special tutoring (or even just a "catch-up") program to help keep her caught up with her class. My sons principal has been great! My son had been in a program for academically gifted kids but was kicked out of that because of all the work he was missing! He is now in a regular classroom and the principal has asked his teachers to not even bother with make-up work as long as it's not in a subject that he really needs to work on. When he is having an episode, all he can do is lay in bed and doesn't even have the energy or interest in his cartoons or playstation! I'm not about to force him to try and do homework at those times. That is just not my priority at that time. It's all I can do to keep his temp down and keep him hydrated enogh to keep us out of the emergency room! Do you think the moderators would let us exchange e-mail addresses?
I finally found some parents with a child with simuliar symtoms as ours. My daughter is two and was sent last year to a childrens hosp I did not like the doctor I was told I worry and she'll out grow her fevers. From anout 6 months to a year and a half she fot sick every month around the same time of the month a high fever of 104 or more and sometimes other symtoms. She was bitten by a spider at age 1 and thats when the surgeon told us something was wrong with her immune system she does break out in white and reddish pimple looking blisters when she runs the fevers, She has been treated for staph about 4 times. Now though for the past 3-4 months she rund a fever of 104 eery two weeks and I have notice bruises that do not seem o go away, we are going again to the childrens hop to a diff Dr. Our PCP says possibilty it is the periodic fever syndrome. I want an answer I am tired of all the blood work and tests she hates Drs and nurses ad now when someone in the groery store talks to her she tells them to go away she tinks everyone that she does not reallt know wants to harm he with needles. She has been in the hospital for thi in ER visits for rehydration with the fever. I feel so relieved to know I am not alone. She is my 4th child by a second marriage and my other 3 children are so healthy.
Last edited by Cleopatra1971; 10-28-2005 at 08:04 PM.