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Old 01-21-2009, 04:00 PM   #31
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josie34 HB User
Re: PFAPA -what?

Hi my name is joseline and my daugther is going to be 3 in march but her symptoms start at 2.5 like your daugther since june she's been in the hospital every month and still they are trying to diagnise her with fmf is a long journey but dont lose your faith and hang in there . i know more than anybody how much support you need ithank God for my wonderfull husband and family....just hang in there and keep asking and presuring your doctors for answers

Last edited by moderator2; 01-21-2009 at 06:49 PM. Reason: posted contact info

 
Old 02-08-2009, 07:55 PM   #32
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Re: PFAPA -what?

My daughter has been almost fever free since we started the citemdine in August of 08.
She had a mild one in Spetember and that's it. Now we are weaning her off the cimetedine to see if that was the "cure" for her. She hasn't had a pill in a couple weeks, so we'll see what happens. The last doctor (hematologist) we saw thinks it's possible she had a viral infection that lasted a year and manifested itself once a month in fevers.
The citemedine starting and the fevers stopping could have been a strange coincidence.
I hope we really are done and I feel very badly for all your children that are still struggling with this disorder. For anyone that has not tried cimetedine (it's an OTC antacid), it may be worth asking your doctor about it. Good luck.

 
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Old 02-08-2009, 08:10 PM   #33
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bethsheba HB Userbethsheba HB Userbethsheba HB Userbethsheba HB Userbethsheba HB User
Re: PFAPA -what?

For those who seek more info on the anti acid, the spelling is cimetidine....

Although your child may have found relief, I suspect it is either a coincidence or the cimetidine is simply treating the symptoms.

I assume your child has been treated with anti biotics? If so, what kind of reactions did she have?

 
Old 02-09-2009, 05:26 AM   #34
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Help4Son HB User
Re: PFAPA -what?

We had tried the Cimetidine for my son, but it was unsuccessful. Fever is not his primary symptom, so we are still not convinced it is PFAPA, but our rheum thought it was worth a try. He said that studies showed it stopped flares for PFAPA patients in almost 1/2 the cases tested. Tonsillectomy is the other treatment that has proven very successful in many PFAPA cases. Unfortunately, that only provided us a month of relief. Still hunting for a diagnosis/treatment...

No matter what the reason for your daughters improvement, I'm happy that she is doing better.

 
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Old 02-09-2009, 05:40 AM   #35
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Re: PFAPA -what?

Quote:
Originally Posted by Help4Son View Post
... Still hunting for a diagnosis/treatment....

I suggest you consider Lyme's disease...I have seen a number of posts coming out of Houston with similar symptoms.

The life cycle of the Borellia burgdorfei and/or its coinfections could explain the nature of the fevers...and other symptoms.

Some considerations...

Some babies are born with lyme
Ticks are not the only insects that carry the disease
Lyme can lay dormant for over 10 years
The Elisa test, used by most doctors to test for Lyme (if they even consider the condition) is so unreliable that many think it should be banned.

Steroid treatment may initially ease the symptoms only to have the symptoms get worse or change in the days/weeks/months following treatment.

Antibiotic treatment may cause a horrible reaction but this is because of the herxheimer reaction, and it means that the antibiotic treatment is working.

Last edited by bethsheba; 02-09-2009 at 05:42 AM.

 
Old 02-09-2009, 06:52 AM   #36
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Re: PFAPA -what?

This is something that we had considered many times, but after a very lengthy conversation with a specialist in the field, we have ruled that out. It is more likely a type of auto-inflammatory or vasculitis type disease with secondary EGID. We have had to transfer his care to a new GI doctor. We see her this week for follow up and treatement. I am in hopes that she will have new ideas.

 
Old 02-09-2009, 12:04 PM   #37
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Re: PFAPA -what?

Quote:
Originally Posted by Help4Son View Post
...but after a very lengthy conversation with a specialist in the field, we have ruled that out.
Did you consult with a pediatric Lyme Literate Medical Doctor? Was that specialist recognized and endorsed by the Lymies on the Lyme board that have been sucessfully treated for Lyme? Did you have a Western Blot done? If not, I would strongly, strongly, strongly encourage you to review the posts on the Lyme boards...many of those people had test after test after test done with negative results...only to have their symptoms respond to lyme treatment.

If the specialist you consulted was a pediatric Lyme Literate Medical doctor, I would consult another one. Specialists are not perfect...they sometimes can't see beyond the nose on their face. I've seen some excellent specialists, recommended by their peers, but despite seeing the best, they overlooked some very basic things in my case.

TESTS for lyme are UNRELIABLE!!! Some medical specialists have called for the ban of the Elisa which most doctors offices use..International Lyme specialists say diagnosis and treatment should be based on symptoms.

Obviously, I can't diagnose your child, nor can I tell you what to do...but I will say that if it were my child, I would be consulting a pediatric Lyme Literate Medical doctor because Lyme can be treated (and caught early enough cured) and chronic conditions can be prevented.

I have read posts from mothers with older children and teens whose children experienced similar fevers when they were young...now the parents are dealing with the neurological symptoms of lyme...sleep disorders, bi-polar and other psychiatric disorders, temper tantrums/rages, ADH, and the list goes on. Had they known, perhaps some of these conditions could be prevented.
Take care...you and your family are in my thoughts and prayers.

Bethsheba

PS Some doctors believe that 1/2 of all chronic conditions are actually lyme.

Last edited by bethsheba; 02-09-2009 at 12:42 PM.

 
Old 02-09-2009, 07:41 PM   #38
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Re: PFAPA -what?

Boy - I didn't spell cimetidine wrong once, but 4 times! Anyhow, my daughter was put on antibiotics every month for about 6 months or so, until we said no more. Her doctor was pursuing bladder or urinary tract infections because of her high fevers. Anitbiotics did nothing. As soon as we saw infectious disease he said PFAPA, but was never truly convinced of that because she was too young to tell us about any other symptoms and she never had mouth sores. She has chronic mild anemia and has ever since they started drawing blood. Does that mean anything to anyone?

 
Old 02-09-2009, 07:58 PM   #39
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Help4Son HB User
Re: PFAPA -what?

We were told that if the cimetidine worked, then the diagnosis of PFAPA would be confirmed. I think if something more was going on, the cimetidine wouldn't mask it and the fevers wouldn't have gone away. As for the mild anemia, I'm not sure. What did her doc say about that?

 
Old 02-10-2009, 04:19 AM   #40
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Re: PFAPA -what?

Quote:
Originally Posted by walli6 View Post
Boy - I didn't spell cimetidine wrong once, but 4 times!
Well, you're doing better than many of us...I ALWAYS spell solely "soley" and that's an ordinary word, not technical, . I only pointed it out to make it easier to "find".

Quote:
Anyhow, my daughter was put on antibiotics every month for about 6 months or so, until we said no more. Her doctor was pursuing bladder or urinary tract infections because of her high fevers. Anitbiotics did nothing. As soon as we saw infectious disease he said PFAPA, but was never truly convinced of that because she was too young to tell us about any other symptoms and she never had mouth sores. She has chronic mild anemia and has ever since they started drawing blood. Does that mean anything to anyone?
Yes! Antibiotic treatment for lyme and its coinfections is dependent on what "bug" or "bugs" may be causing the infection...so the treatment and the length of treatment depends on which bug or how many different kinds of bugs are causing the symptoms...from what I've read, one of the strains cycles every 3-4 weeks which may account for the frequency of some of the fevers (that is one reason the timing and duration of the antibiotic treatment is critical). Children who have fevers that don't cycle in this way, may have been infected more than once over a period of time which would throw off the regularity of the recurring fevers.

Many women have chronic yeast, bladder, and urinary tract infections...chronic conditions of this nature go hand in hand with Lyme...I have read that some doctors think that 1/2 of their patients with these conditions have lyme...your ID doc may have been on to something here...but again, I think it is Lyme related.

Some posters on the Lyme board have said that Infectious Disease doctors are the worst when it comes to diagnosing/treating lyme...I'm paraphrasing here, but I think you know what I mean.

It may very well not be Lyme....but I personally wouldn't rule it out. Undiagnosed Lyme can lead to many chronic conditions...arthritis (clicking and popping joints), bowel problems (IBS, celiac), allergies, psychiatric problems (bi-polar is a common diagnosis), cognition problems, sleep disturbances, and possilbly death. It's just too serious a condition to ignore/deny.

 
Old 02-10-2009, 07:40 PM   #41
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walli6 HB User
Re: PFAPA -what?

Always more blood draws - cronic anemia with the fevers was raising a celiac disease possibility, but the fevers are gone (for now & hopefully forever). We have stopped pursuing anything unless her fevers return. She had fevers for about 11 months before they disappeared as mysteriously as they started - unless it was the cimetidine??

 
Old 02-12-2009, 04:13 AM   #42
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Re: PFAPA -what?

Quote:
Originally Posted by walli6 View Post
...She had fevers for about 11 months before they disappeared as mysteriously as they started - unless it was the cimetidine??
I doubt it was the cimetidine...symptoms of many conditions ebb and flow depending on a number of factors.

People who have had lyme for a period of time can present with low grade fevers that come and go, but as time goes on other symptoms may arise...especially if the immune system is challenged (by steroids, stress, injury, other illnesses).

If you haven't already done so, it may be helpful to document the symptoms over time...date, time, description, duration, environmental factors, etc. You may begin to see a pattern.

 
Old 03-17-2009, 09:58 AM   #43
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Kaamodt HB User
Re: PFAPA -what?

I'm an adult diagnosed with PFAPA. I've had it for the past 6 years, at least. 6-8 week periods between 6 day fever episodes generally reaching 105 degrees began when I was 18yrs old. I had my tonsils taken out 6 months ago, and have not had an attack since, knock on wood. Prednisone or other corticosteroids are the only thing that abate my fevers. I've had a workup for everything else that numerous specialists could think of -- all coming back negative. This syndrome is no fun at all.

Albeit, I wanted to present myself to this PFAPA community as someone who has experienced it himself, and done a lot of research on this perplexing and little-known syndrome.

 
Old 04-02-2009, 07:04 PM   #44
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Re: PFAPA -what?

First I have to say i have been reading these message boards for 2 years and have never replied to anything. I am so glad to know that there are other parents out there going through this horrible thing known as pfapa. My daughter has been dealing with this basically since she was born. She had a fever at two weeks old and the doctors thought I was crazy. She has been getting them pretty consistently ever since. She wasn't officially diagnosed until about 5 months ago. She has taken many different meds. Colchicine, methotrexate along with folic acid, prednisone, and is now on her first week of cimetidine. She just had an episode last week. We are not sure if the cimetidine is gonna work. We are trying to convince her specialist to get her tonsils out but they really won't consider it. She is not quite 3 yet so I don't know if they just think she is to young or they are just trying every med first. Anyways it is nice to have somewhere to go to get info on this crazy syndrome and know that you are not going through this alone.

 
Old 04-07-2009, 04:07 PM   #45
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Linden123 HB User
Re: PFAPA -what?

My 3 1/2 year old daughter had monthly periodic fevers, plus swollen lymph nodes for 2 years. After ruling out every other cause with blood tests & genetic testing the doctors agreed to a adenotonsilectomy. I had to be rather pushy with them. She had the surgery in January and has not had a fever since. We did end up in the hospital for 5 days due to dehydration because she wouldn't drink, but I consider every moment worth it. I am extremely optomistic that her fevers are now cured as we have never gone 3 months without a fever!

 
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