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Old 08-07-2006, 05:39 PM   #1
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mamoda HB User
New here with ?

My DD was DX with PFAPA.

I am interested in any possible connections with routine vaccinations?

Any one her with a PFAPA child who did not vax?

 
Old 08-08-2006, 06:10 PM   #2
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ThrghbrdJmpr HB User
Re: PFAPA Periodic Fever Syndrome

My DS was just diagnosed with PFAPA today. I never thought of a vaccination connection. I hope that's not the case!

 
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Old 08-09-2006, 03:54 PM   #3
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claflamme HB User
Re: My DD was DX with PFAPA

May I ask what made them diagnose that, and how?
Thanks

 
Old 09-26-2006, 07:16 PM   #4
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mlopresti HB User
Re: My DD was DX with PFAPA

I also have an 18 month old who may have pfapa. I haven't heard of anything related to vaccines but if it helps, my daughter is a twin and has had the same vaccines, from the same lots as her twin sister and she is fine. Who knows though. I am just happy I have a new dr. who isn't telling me she has another virus. If you get a chance, tell me more about your daughter and her symptoms.

 
Old 10-16-2006, 05:16 PM   #5
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linda ficano HB User
periodic fever symdrome

My son has had bouts of fevers for about 18 months since starting college it has happened about every 6 to 8 weeks. He is currently 19 years of age. I would like to hear from people effected with this disorder in adolescents. Has anyone found medicine that is helpful. My son nausea and vomiting along with the high fevers are his worse complaints.

 
Old 10-17-2006, 10:34 AM   #6
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claflamme HB User
Re: My DD was DX with PFAPA

Hi there you are luck to have gotten a dx. Because not alot of dr's know much about PFAPA. My daughters rhuematologist thinks she may have it I haven;t really kept to much track of her fevers but they were every month ot two for about 1 1/2 yrs now. The last few were:
June 9th
Aug 8th
Oct 9th.
She doesn't follow up until dec. But her GI dr is going to explain it more to me on thursday at my older daughters appt.
My youngest will be 3 next month.
How did they dx is was there certain tests etc?
Thanks

 
Old 10-25-2006, 06:07 AM   #7
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PatriciaB HB User
Re: My DD was DX with PFAPA

This reply is for all of you but mainly for Linda, because her son is older. I would suggest that all of you research not only periodic fevers on the internet but also genetic fever disorders. There is alot of good information out there.
There is PFAPA but there are also 3 main genetic fever disorders. They are Hids, Traps and FMF.
I have 4 kids and one of them, my youngest, has been diagnosed with FMF. He is now 13 years old but started with the fever episodes at age 5.
The main thing is to push for the genetic testing. PFAPA can only be diagnosed after all of the other disorders have been ruled out. There is no single test to diagnose PFAPA, which fortunately will be outgrown. Most of what I have read says that PFAPA is typically outgrown approximately 8 years from onset.
However, if your child has one of the genetic disorders, it will never be outgrown and one of them, FMF, can be fatal if left untreated. There are currently no cures for the genetic disorders but each one has specific treatments that can be used to make symptoms more bearable for the child and the family.
There is a study going on at the National Institutes of Health in Bethesda, Maryland for people with the genetic disorders as well as PFAPA. It can take up to a year to be accepted into the study but meanwhile, the doctors there are very willing to help guide local pediatricians through testing and treatments. By the way, if you are accepted into the study, all you need to pay for is travel. NIH pays for all labs, testing and medications.
To Linda, your son is a little old, I would think, for this to be typical PFAPA. I would be more likely to suspect he may have one of the genetic disorders. Not to say he has it but it is not uncommon for FMF to rear it's ugly head at age 19.
Also, since most of the genetic disorders tend to be associated with a certain ethnic background, some docs will choose to test for only one or 2 of the disorders. Don't fall into that! More and more cases of each are being diagnosed outside of those ethnic circles. My son has FMF (Familial Mediterranean Fever) but we have yet to find the mediterranean link in the family!

 
Old 10-26-2006, 06:04 AM   #8
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claflamme HB User
Re: My DD was DX with PFAPA

My daughter who will be 3 next month had had bouts of unknown "Viruses" as the dr says. Since she was about a year or a year and a half old. I didn't write them all down but I started and so far we have:
6-9-06: fever no other symptoms
8-8-06:fever no other symptoms
10-9-06: fever no other symptoms
she occassionally get mouth blisters on her lips but disappear very quickly as they come. She has seen a rheumatologist who did blood work but seemed fine. But she will retest her when she has another fever because she didn't when the tests were done. I was reading the levels will show when an episode strikes then return to normal when it is over. But she follows up in Dec.
But a new thing is since Oct.9th she has had 2 fevers but only lasting 1 day each. How is that possible the others have lasted at least 2-3 days.
Thanks if you have any info for me.
C

 
Old 10-26-2006, 06:05 AM   #9
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claflamme HB User
Re: My DD was DX with PFAPA

I don't know if it means anything but I will tell you what she had had If I remember them all:
Thrush
Ear Infection
Strep Throat
Coxsackie virus
pnuemonia twice
Flu
Rotovirus
Viral sore throat w/fever
many other virus'

C

 
Old 10-26-2006, 06:08 AM   #10
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claflamme HB User
Re: My DD was DX with PFAPA

just one more thing to add the rheumatologist did mention Periodic fever to me. Which I guess alot of dr's are not familiar with,so that is a plus.
C

 
Old 01-18-2007, 10:18 AM   #11
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linda ficano HB User
Re: My DD was DX with PFAPA

Quote:
Originally Posted by PatriciaB View Post
This reply is for all of you but mainly for Linda, because her son is older. I would suggest that all of you research not only periodic fevers on the internet but also genetic fever disorders. There is alot of good information out there.
There is PFAPA but there are also 3 main genetic fever disorders. They are Hids, Traps and FMF.
I have 4 kids and one of them, my youngest, has been diagnosed with FMF. He is now 13 years old but started with the fever episodes at age 5.
The main thing is to push for the genetic testing. PFAPA can only be diagnosed after all of the other disorders have been ruled out. There is no single test to diagnose PFAPA, which fortunately will be outgrown. Most of what I have read says that PFAPA is typically outgrown approximately 8 years from onset.
However, if your child has one of the genetic disorders, it will never be outgrown and one of them, FMF, can be fatal if left untreated. There are currently no cures for the genetic disorders but each one has specific treatments that can be used to make symptoms more bearable for the child and the family.
There is a study going on at the National Institutes of Health in Bethesda, Maryland for people with the genetic disorders as well as PFAPA. It can take up to a year to be accepted into the study but meanwhile, the doctors there are very willing to help guide local pediatricians through testing and treatments. By the way, if you are accepted into the study, all you need to pay for is travel. NIH pays for all labs, testing and medications.
To Linda, your son is a little old, I would think, for this to be typical PFAPA. I would be more likely to suspect he may have one of the genetic disorders. Not to say he has it but it is not uncommon for FMF to rear it's ugly head at age 19.
Also, since most of the genetic disorders tend to be associated with a certain ethnic background, some docs will choose to test for only one or 2 of the disorders. Don't fall into that! More and more cases of each are being diagnosed outside of those ethnic circles. My son has FMF (Familial Mediterranean Fever) but we have yet to find the mediterranean link in the family!
Hi Patricia B..I wanted to get back to you regarding my son Nicholas. We did in fact have him tested (genetic testing) and he tested positive for FMF. It stinks because the colchincine didn't work for him so now he will be given steriods when he experiences a flare up. I'm glad to have a diagnoises but I wish there was a treatment available to him to keep the inflamation @ bay. He has to wait until he really is actually feeling all the horrible symptoms before he starts the steroids.. We have seeked out a doctor in NYC (Mt Sinai)
that specializes in FMF.. Hope is doesn't retire anytime soon. I think you really need to have the genetic testing completed in order to find out what is going on.

 
Old 02-04-2007, 03:19 PM   #12
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PatriciaB HB User
Re: My DD was DX with PFAPA

Linda, I'm sorry about the diagnosis but I can't believe that the steroids are the only treatment option you were given! There are several drugs being used to try to keep the episodes under control. Even if the colchicine didn't help to stop the episodes, usually it is continued to keep amyloidosis from either arising or progressing. I know that the docs at the NIH are using a couple different drugs if the Colchicine doesn't work. They will use either Enbrel, or methotrexate, and there is another, newer drug that is helping some of the kids that Colchicine doesn't affect. I believe it is called something like anikirase, something like that! I'll look it up again and let you know. Maybe you could have your doctors contact Dr. Daniel Kastner at the NIH for guidance? It would be worth a try!

 
Old 02-28-2007, 11:02 AM   #13
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linda ficano HB User
Re: My DD was DX with PFAPA

Patricia..So glad to get your response.. The doctor did mention two of the medications you had suggested Embrel & Anadinra. My son wasn't excited about the daily injections. The doctor indicated his kidneys right now are fine I guess because he got started with this illness later in life. So right now he wants to continue just taking the steriods when necessary. The doctor indicated to us that alot of the new medication haven't had any long term studies and we were worried about that. Colchicine has been on the market for forever and long term side effects don't seem to be and issue from what I have heard. Have you ever heard of anyone that just outgrew this problem? It seems that Nicholas has a flare up about every 8 weeks or so. It turns us inside out and my heart breaks for him. I am glad to have the diagnoises and I hope as he gets older maybe he won't get sick as often. We don't know of anyone in the family with this illness however both grandparents extended family is from parts of Italy. My mothers mother was from Spain so there is a Metereanean link in the extended family but we know of no one that has ever been sick with these symptoms. I'm glad to have had the opportunity to discuss this with you. Linda

 
Old 03-08-2007, 04:00 AM   #14
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PatriciaB HB User
Re: My DD was DX with PFAPA

Linda, if he is diagnosed with FMF, then that is one of the genetic disorders so that means that it is in his dna and he will never "outgrow" it. He may have periods of remission that can last for years but it will inevitably return. Did you say that he was on Colchicine daily? He should be if he isn't. That is what will prevent the amyloidosis from arising in the first place.I don't think you want to wait for sypmtoms of kidney problems to show up. I read somewhere that if FMF is left untreated by Colchicine, amyloidosis will be fatal 5 years from onset of amyloidosis. Why take the chance and wait when the colchicine will stop it from happening altogether? The Colchicine should also help him to not have episodes or at least reduces the severity.

 
Old 03-12-2007, 06:18 AM   #15
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Re: My DD was DX with PFAPA

Quote:
Originally Posted by mlopresti View Post
I also have an 18 month old who may have pfapa. I haven't heard of anything related to vaccines but if it helps, my daughter is a twin and has had the same vaccines, from the same lots as her twin sister and she is fine. Who knows though. I am just happy I have a new dr. who isn't telling me she has another virus. If you get a chance, tell me more about your daughter and her symptoms.
Hi there how long had your daughter had her fevers? My daughter is now 19 months and it started at 11 months. In the beginning episodes were every 3-4 weeks but we've had 7 weeks last time and 7 weeks and counting now! The dosctors were initially telling us it's just a virus but then suspected HIDS, a periodic fever syndrome that's even more rare than PFAPA. Luckily it now looks like it's PFAPA - I say luckily because at least they usually grow out of PFAPA whereas HIDS is a genetic disease that stays with them for life and has a 25% chance of future siblings having the same!

 
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