I need help!!! My daughter, two months ago was diagnost with Periodic Fever Syndrome, however they are still trying to determine which form. They believe it could be any of the 7 hereditary forms, or if not any of those then they will diagnose it as PFAPA. My daughter is 1 1/2 years old. She starting getting fevers 7 months ago and they come every 3 weeks and are in the 105's. They tend to last 9 days and happen like clock work. I even can tell when they are starting. She is in an episode right now and even seems to be in a lot of pain. She can't communicate where its at, but my hunch tells me its her belly by her mannerisms. She is under the care of her physician, genetists, infectious disease specialist, and the rheumatology dept, and now being referred to a GI specialist. I am getting a run around!! She is getting blood work done weekly and having hospital stays at each episode lasting 1-7 days still with no answers on which form. She is just treated for dehydration. They gave her a trail medication called Prednisolone Sod Pho 3mg/ml at last fever and it worked within 12 hrs. However her pediatrician prescribed it against specialist recommendations of waiting for a couple months till a determination can be made. My heart is being ripped out!! She does not eat and getting her to drink can even be a struggle. She doesn't even sleep through the nights because of it. I am so tired of seeing her in pain and so exhausted of fighting these fevers. Is there anyone who can give me advise or recommendations? Does anyone know of this medication? I have so many questions, I just have nobody with answers... please help!!
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Help, my daughter has Periodic Fever Syndrome
- By AnnaLeeR
- Posted September 14, 2009 at 1:14 am · 20 replies
- In Getting a diagnosis
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Explore topics in this discussion:
Dehydration Night terrors Tylenol Motrin PFAPA Fever Colchicine Wells syndrome Rashes Prednisolone Pain TRAPS Prednisone Rare diseases Diarrhea Cimetidine
20 replies
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- By NORDGeneticCounselor
- Posted September 14, 2009 at 9:40 am
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I am very sorry to hear about your daughter's health problems. I suggest that you contact the NOMID Alliance for assistance:
http://www.nomidalliance.net/gpage2.html
http://www.nomidalliance.net/contact.html
- By bmo311
- Posted September 17, 2009 at 10:08 pm
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Hi! I feel your (and your daughter's pain). I too just found this site and have be dealing with this for quite some time. We are in the midst of diagnosing PFAPA as my daughter's condition for her periodic fevers. She is now 21 months old and currently in an episode. Her history is complicated with a short background of ovarian cyst removal at 9 months old and VUR (kidney reflux). She has had 2 confirmed UTIs, which the last one in June landed us in the hospital for a few nights. Up until last month the urologist has been concerned about all of this being UTIs, after the fevers coming more frequently on a pattern since February of this year, he sent us to a infectious disease doctor. They ran a series of bloodwork and told us to check in with him at the next episode (today was that day). Luckily all of the bloodwork came back clear of any other conditions that could cause periodic fevers (immune problems and rheumatological). Therefore at our next episode next month he wants us to try the prednisone treatment to see if we get rid of the fever, he said if that works then his diagnosis would be complete with PFAPA. I just wanted to let you know where we were coming from, and I know how difficult it is dealing with your child getting sick so often. My daughter usually gets pretty high fevers spiking in the 104-105 range and staying at 101 throughout the duration. Her episodes only usually last about 3-4 days and she is completely normal between them. She doesn't drink or eat much either. Luckily we have yet to take her in for dehyrdration (besides in June with the UTI). So each month we have to check her urine (cause with a child that's the only way to check if its a UTI). I don't like the idea of giving steroids to her, but I will do it to get the diagnosis. Also does your daughter have other symptoms of PFAPA besides fever? Mine only has the fever. NO mouth sores, swollen lymph nodes or obvious abdominal pain. She usually gets the chills when her fevers are spiking and that's about it. I know I didn't solve any of your problems but I think that just knowing others are out there like you brings some kind of comfort.
- By AnnaLeeR
- Posted September 24, 2009 at 8:47 pm
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Thank you for replying... It is great to hear from another parents going through this. Right now, she is doing great and I have 8 more days till her next fever. The steriod given to her actually makes her onsets come closer together now. The specialist at Seattle Childrens told us we are only allowed 4 doses in a month, due to the severe side effects. That just concerns me. She is going to at least one dr visit a week and having blood draws every wednesday and friday for at least one month. I just hate her having to go through this. Even though she is so strong. I can't believe how strong a 1 1/2 year old can be. I would love to talk to you more. I would love us to compare notes. I journal her temps, bowel movements, eating habits, and attitude daily. Its amazing how it the same exact routine each time. And yet each time her fever gets so high, I get so upset like its the first time. Just cant find others out there that are dealing with this. Thank you again for sharing your story!!
- By chris92121
- Posted September 27, 2009 at 10:43 pm
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Hi, my daughter is 17 months old and they think she has the periodic fever syndrome. She gets a fever every 3-4 weeks. It breaks my heart because her fever is sometimes as high as 105-106 deg. She's in and out of the emergency room. Doctors we see thinks it's viral. We got her blood drawn last week. And it was the first I heard this diagnosis - periodic fever syndrome. Only one doctor mentioned this to me that my daughter might have this syndrome. However, I don't know which of the periodic fever syndrome she has.
- By LishandRod31
- Posted September 28, 2009 at 8:22 am
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My son started with fevers and occassional rashes, at 6 months. He too didn't sleep through the night, wouldn't eat, and seemed to be in a lot of pain. I believed his pain was in his head BUT the later diagnosis of Muckle Wells Syndrome tells me he probably had joint pain. The best suggestion I can give you, as it appears your daughter doesn't have symptoms of Muckle Wells Syndrome is don't stop looking for answers until your satisfied with what the dr's are saying. These rare diseases are something most dr's won't even touch much less had expereince with or knowledge of. Seek out specialists who have had first hand knowledge of PFS. Our pediatrician tried to convince us it was viral for him as well, but it just didn't seem right. Now we're patients at one of the largest Children's Hospitals and we're only the second family that the clinic there has ever had, with Muckle Wells. Good luck in your search for answers.
- By ladyblueppd
- Posted September 29, 2009 at 2:57 pm
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My son was dx with PFAPA at age 18months old he is now 5. Dr's usually DX PFAPA by exclusion. If it is not any of the other ie ( Cyclotic neutropina, Met Fever TRAPS HIDS ect..) The it is PFAPA. There is no blood test for it the DR's are making sure it is not any other disorder. Steriods ( Prednisolo) will make the fever abort but is will return faster. This only happens for a period of time then they will start spreading apart again. As your daughter get older the fevers will also start spreading out and will not last so long. My Son started at 12months every 14 days for a fever of 8 days it was so heartbreaking. Now at 5yoa he fevers every 35 days only for a day or two. I do not give him steriods just motrin and tylenol to keep him comfy. His neck swells, sores in his mouth, stomach ache, body aches. That becasue the SED rate in the blood increase wich causes inflamation. When he was younger he always was constipated small pellet like bowel movements and his breath smelled like fish when the fever was comming. I have been through this for years and have done alot of research on it. please reach out for me if you have any questions
- By SixLittleFeet
- Posted September 30, 2009 at 1:44 am
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My DD has TRAPS and she experienced the same thing you are describing. Her onset was 6 months.
- By Lidget
- Posted November 8, 2009 at 4:52 pm
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Hi, my daughter (5) probably has PFAPA. Fevers every three weeks, and swollen lymphs in the neck so she can't turn her head properly. Healthy in between attacks. What annoys me most is that so many doctors are not aware of this syndrome and you have to find it all out by yourself. The questions I have can not be answered by my doctors. Who has any idea: why my daughter does not have any attacks during summer? She usually skips july and august. And why did she first have fevers every two weeks, then every four weeks for a year, and are we now back on a three week schedule? Isn't it supposed to get less gradually? Hope anyone recognizes anything. I can't seem to find a support group in Holland.
- By celestap6
- Posted November 12, 2009 at 5:58 pm
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Hi Anna I am going through the same thing you are with the fevers, but doesn't be to be any pain, my grandson which I have custody of has had these fevers since he was 2 months old, and they are just like your childs, I have been seeing the same Doctors as you have been seeing specialist and feel like I am also getting the run around, if you have found out what is causing the fevers I would appreciate any help you could give me or just write I could really use the support and like you I know when they are coming, One question does your child also get canker sores when she has a fever and swollen glands?
- By bumkin
- Posted November 18, 2009 at 8:15 am
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my heart goes out to you all. my daughter is now three and has had fever episodes from birth . she has had about 30 admissions some lasting 9 days. she has had utis and has scarring of both kidneys. she has had numerous blood work done and various ultra-sounds, x-rays dmsa and three lumber punctures mostly done in the first 18 months. she has seen a specialist in london who looks at periodic fevers and has had dna banked for genetic testing. she has been tested for hids traps and fmf so far but were inconclusive. she is now waiting for her tonsils and adenoids to be removed as they are now looking at pfapa. she is currently having episodes every two weeks and we can prdict when one is coming. she has a temp of 40 and above she has rigours and mottled skin before a spike she then goes goose pimply and very lethargic. she vomits and has very loose stools but is always constipated through an attack. she has enlarged tonsils on most attacks which are covered in white exudate but there is never any strep or staph infections present.she complain all the time of having a bad belly and its swollen at times. she has bloods done each time which always show raised crp and wcells and sometimes raised lymphocytes and neutrphiles but no cause is ever found other than mouth ulcers swollen lymph nodes stomach pain and she doesnt drink or eat much for about three days. she sees a consultant every few weeks and i ring him or he rings me if need be. i spend every day on the internet looking for answers as they have said that she doesnt have the main fever syndromes according to the blood work but i have read a number of times that a child of her age can still present with these syndromes even if bloods say different. she is currently on colchicine 250mcg twice daily tremethoprim 2.5 ml at night and predisolone 15mg daily when an attack starts for up to three days. that was fine when she fevered every 28 day but now it is 14 days it is worrying me giving her so much meds. more worrying is colchicine how safe is that and is this effecting her kidney function who knows? we go to see an immunologist aswell every 3-6 months and they are very helpful too. she had a few months on anakinra injections but continued to fever so they stopped it but maybe she wasnt on it long enough. injecting her was upsetting every day but it had to be done.if anyone has any extra info that might help us not that i think there could possibly be any more out there i would be very grateful as we feel old timers now after all this but that doesnt mean we know it all. if anyone would like a chat that would be nice.
- By bumkin
- Posted November 18, 2009 at 8:28 am
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my heart goes out to you all. my daughter is now three and has had fever episodes from birth . she has had about 30 admissions some lasting 9 days. she has had utis and has scarring of both kidneys. she has had numerous blood work done and various ultra-sounds, x-rays dmsa and three lumber punctures mostly done in the first 18 months. she has seen a specialist in london who looks at periodic fevers and has had dna banked for genetic testing. she has been tested for hids traps and fmf so far but were inconclusive. she is now waiting for her tonsils and adenoids to be removed as they are now looking at pfapa. she is currently having episodes every two weeks and we can prdict when one is coming. she has a temp of 40 and above she has rigours and mottled skin before a spike she then goes goose pimply and very lethargic. she vomits and has very loose stools but is always constipated through an attack. she has enlarged tonsils on most attacks which are covered in white exudate but there is never any strep or staph infections present.she complain all the time of having a bad belly and its swollen at times. she has bloods done each time which always show raised crp and wcells and sometimes raised lymphocytes and neutrphiles but no cause is ever found other than mouth ulcers swollen lymph nodes stomach pain and she doesnt drink or eat much for about three days. she sees a consultant every few weeks and i ring him or he rings me if need be. i spend every day on the internet looking for answers as they have said that she doesnt have the main fever syndromes according to the blood work but i have read a number of times that a child of her age can still present with these syndromes even if bloods say different. she is currently on colchicine 250mcg twice daily tremethoprim 2.5 ml at night and predisolone 15mg daily when an attack starts for up to three days. that was fine when she fevered every 28 day but now it is 14 days it is worrying me giving her so much meds. more worrying is colchicine how safe is that and is this effecting her kidney function who knows? we go to see an immunologist aswell every 3-6 months and they are very helpful too. she had a few months on anakinra injections but continued to fever so they stopped it but maybe she wasnt on it long enough. injecting her was upsetting every day but it had to be done.if anyone has any extra info that might help us not that i think there could possibly be any more out there i would be very grateful as we feel old timers now after all this but that doesnt mean we know it all. if anyone would like a chat that would be nice.
- By bmo311
- Posted November 18, 2009 at 9:56 am
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Hi Bumkin. Does your daughter also have VUR (kidney reflux). I noticed you said she has had UTIs and kidney problems so I figured she had it but you didn't say. My daughter also has VUR along with PFAPA so I was just curious since you are the first person I have read about that has kidney issues as well as the fevers. It is really difficult dealing with both problems at the same time. We are currently preparing for my daughter's 2nd birthday on Friday, but also anxiously awaiting her next episode which usually comes during this week. I am just hoping it holds off for her party!
- By bumkin
- Posted November 20, 2009 at 6:21 pm
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i think it did show on her last scan and she has scarring of the right upper poleof the right kidney and dilatation of theright renal pelvis and also scarring of the left kidney. we currently do weekly urine tests to monitor utis and have antibiotics if need be. she is still in nappies day and night due to very loose stools and heaavy wetting at night and when unwell she would not be getting to the loo on time. as for waiting for the next episode if she is like my child no one could time it better every birthday xmas easter holidays halloween she is normally in hospital or very unwell as like you we know when it is due so you try and arrange things around it but it sometimes beats us the rest of her sisters are just used to it now but it also seems very unfair to them a sister always in hospital and not going places as she is always unwell . we are waiting to see the immunologist in january and also a kidney specas the immun is concerned about thescarring getting worse and why. as for her party i hope she can hold out and has a lovely time as there is one thing i definetley know these periodic fever syndromes can be very cruel to their hosts but one thing for sure kids do harden to them over time they still feel very unwell but they just learn to cope somehow forcing out a smile even when they must feel really groggy
- By mdjb_bryant
- Posted November 20, 2009 at 8:11 pm
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I have a solution finally! I am so happy to share this with you. My son has had Pfapa for almost 4 years. We were just now sent to a rhumatologist. I did some research myself online because I was so tired of the guessing. He has been on predisone the whole time. His outbreaks started once a month and then turned into every 2 weeks. Anyway, there is a Dr. Miller in Chicago at the Mayo Clinic who has done a lot of research. He found a drug called Colchicine. My son takes one pill a day. He has not had an outbreak since September 8th. I told the rhumatologist what I had found out about the drug and said I wanted to try it. It has been a blessing no side effects what so ever! He is the healthiest he has been since an infant. Please feel free to contact me for more info.
- By DgufoInspire
- Posted November 20, 2009 at 11:18 pm
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Did you hear about the good results with the use of cochicine 0.6 mg 1/2 to 1 tab per day for PFAPA? It apparently prevents the white cells from overstaying their welcome at sites of inflammation. It can cause nausea, cramps, and diarrhea if the dose is too high. It is safer than prednisone because it is not an immunosuppressant and doesn't affect bone or sugar.
Dr David
- By rrinke2
- Posted November 21, 2009 at 11:18 am
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My little ome was just diagnosed with pfapa this week. I am wondering how your child is doing? Mine gets fevers that go that high and it is scary no matter how many times they tell me it is not harmful longterm. We are exhausted from the 3 hr rotation of motrin and tylenol. My ID dr doesnt recommend tonsilectomy yet and I am not comfy with the prednisone yet. I have read and was told by my ID dr that it shortens the length of flare up but makes them occur more frequently. I was also told that during a flare up she is not contaious with any virus but cannot find any info that says that. Any help?
- By AnnaLeeR
- Posted November 21, 2009 at 6:43 pm
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Wow, thank you for all the new info. The cochicine sounds great. I have never heard of it and I am continously doing research. We are waiting on test results to rule out HIDs and Traps. They are still pretty sure its PFAPA. My daughter also was been diagnost with some GI issues and they are being treated. She is on Cimetidine 2xday. It has been amazing. The prednisone made her episodes 6 days apart and when we started cimetidine it pushed back out to 3 weeks apart. This last episoded the fever was in 101's. They said that with every episode they will get less and less till gone, we even didnt give the Prednisone last time. I just cant believe how long its taking to get her health under control. Patience has been key. As far as a tonsilectomy, her drs said that they wont want to do it. That in a lot of cases the fever returns a couple months later. My daughter already as had her adnoids removed? I dont know if I agree with them. I have read about a lot of sucess stories. What could it hurt? Have you heard of the new test through Gene Dx that will dx PFS with only one blood draw? My drs are on the waiting list. My daughter has been not felt well in over 6 weeks (its been one virus after another, around episodes.) She is house bound and not around other people. Do any of your kids seem to get ill easily?
- By bumkin
- Posted November 22, 2009 at 6:29 pm
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yes you are quite right pred works very fast but makes the next attack come back twice as fast. i have also been told that she is not contagious through an attack at all and no bacterial cause is normally found but my worry is my docs let me decide when to give pred and if im not sure to ring them but what a responsibility that is for us as parents to judge is she is fever syndrome unwell or anything serious unwell. at the moment i can give 25mcgs as attack starts once a day for three days but i try and give 15mcgs depending on attack. pred can give some horrible side effects the worst for her are night terrors and cold sweats which is why i try to give less . if after three days i have to take her to see cons do you have trouble with nurofen and paracetomol not lasting 4-6 hours? and do you use supposotories as temp control? as she gets so sick with high temp that that is the only way to keep control over the situation . not very nice for such young children though
- By bumkin
- Posted November 22, 2009 at 6:34 pm
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sorry to everyone for going on and on but ive had so much to say and so many questions to ask im so glad to have found this site and grateful for the friends that have accepted me already i have been helped so much already andi hope i can do the same THANKS
- By rrinke2
- Posted November 22, 2009 at 8:55 pm
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THank you so much for the information. We are just beginning and at her next flare up our ID dr wants to see her and I am bringing this information with us! After reading about the side effects, immediate and long term, of pred i am not comfortable with it. This new drug, Colchicine sounds like the first positive thing ive heard of. Just waiting for her to outgrow this seems unbearable!
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