bdettis
01-23-2001, 05:24 PM
My 3 year old son has been diagnosed with PFAPA. I would like to talk with anyone who is familiar with this syndrome.
Anyone interested in getting more information about this syndrome or has information to share please go to "rare diseases" under Healthboards.com.
[This message has been edited by bdettis (edited 01-30-2001).]
Anyone interested in getting more information about this syndrome or has information to share please go to "rare diseases" under Healthboards.com.
[This message has been edited by bdettis (edited 01-30-2001).]
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s0lflower
02-01-2001, 09:20 PM
This message is for Allison, from a message board that is no longer posting.
Our daughter has also been diagnosed with PFAPA, after nine years of unexplained fevers. Her doctor has just prescribed the Cimetidine and wants to try it for 3 months, evaluate and determine if we should continue. Were there any down sides to the extended use, as you referenced "six months" of use by your son?
You will be glad to learn that although our daughter started with fevers almost immediately, experiencing fevers every two weeks during infancy, the frequency between episodes does lenghten with age. Her toddler years she had fevers every month, than every other month for several days at a time. Now, at age nine, the frequency is about three months maybe even longer if she's lucky. It has been nine years of holding my breath everytime they took blood for testing, fearing the worst and yet fearing the unknown even more. Finally, we have a name for what she has been experiencing and even though they do not know the apparent cause, the outcome looks promising. Please let me know your thoughts on the medicine and thanks for your time.
Beth
PS. bdettis, if you have any information on medications or treatments, please advise.
The best of luck to both of you and your children.
------------------
Beth
Our daughter has also been diagnosed with PFAPA, after nine years of unexplained fevers. Her doctor has just prescribed the Cimetidine and wants to try it for 3 months, evaluate and determine if we should continue. Were there any down sides to the extended use, as you referenced "six months" of use by your son?
You will be glad to learn that although our daughter started with fevers almost immediately, experiencing fevers every two weeks during infancy, the frequency between episodes does lenghten with age. Her toddler years she had fevers every month, than every other month for several days at a time. Now, at age nine, the frequency is about three months maybe even longer if she's lucky. It has been nine years of holding my breath everytime they took blood for testing, fearing the worst and yet fearing the unknown even more. Finally, we have a name for what she has been experiencing and even though they do not know the apparent cause, the outcome looks promising. Please let me know your thoughts on the medicine and thanks for your time.
Beth
PS. bdettis, if you have any information on medications or treatments, please advise.
The best of luck to both of you and your children.
------------------
Beth
bdettis
02-02-2001, 04:01 AM
Hi Beth. Thank you for replying to my message. I don't know anything about Cimetidine. Is it a steroid?
We give our son 3 ML of Prednisone when his fevers surface. He gets his fevers every 7 weeks. The Prednisone knocks the fever completely out and he is completely back to normal the next day.
He is 3 1/2 and has been officically diagnosed with PFAPA since the age of 2 1/2. I believe he has had this syndrome his whole life as I can remember him being sick with very high fevers when he was an infant and taking him to the emergency room at least 3 times during his first year of life.
I'm glad we have a name with our son's periodic fevers. I hope these fevers have no long term effects. Doctors seem very optimistic and say there should be no lasting effects. I'm glad to hear the episodes lengthen with time.
My e-mail address is pfapamom@hotmail.com. If you have any articles or information regarding PFAPA, I would be greatly appreciate forwarding the information. If you have an e-mail address I would be more than happy to send you information as well.
I would be interested in knowing how the Cimetidine affects your daughter. Could you please keep me posted?
Best of luck to you and your daughter.
bdettis
We give our son 3 ML of Prednisone when his fevers surface. He gets his fevers every 7 weeks. The Prednisone knocks the fever completely out and he is completely back to normal the next day.
He is 3 1/2 and has been officically diagnosed with PFAPA since the age of 2 1/2. I believe he has had this syndrome his whole life as I can remember him being sick with very high fevers when he was an infant and taking him to the emergency room at least 3 times during his first year of life.
I'm glad we have a name with our son's periodic fevers. I hope these fevers have no long term effects. Doctors seem very optimistic and say there should be no lasting effects. I'm glad to hear the episodes lengthen with time.
My e-mail address is pfapamom@hotmail.com. If you have any articles or information regarding PFAPA, I would be greatly appreciate forwarding the information. If you have an e-mail address I would be more than happy to send you information as well.
I would be interested in knowing how the Cimetidine affects your daughter. Could you please keep me posted?
Best of luck to you and your daughter.
bdettis