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-   -   Who has used steriods with PFAPA? (http://www.healthboards.com/boards/rare-disorders/668309-who-has-used-steriods-pfapa.html)

lotusseeds 02-04-2009 04:51 AM

Who has used steriods with PFAPA?
 
My son was supposed to have surgery yesterday to remove tonsils and adenoids. The had to cancle because he had a PFAPA episode, but it was out of his regular schedule. They rescheduled his surgery for next week, but that is his usual schedule to get a flair-up. I was wondering if anyone has had a child with an extra flair-up and if anyone here has used steriods to abate an episode? I am thinking if he starts in with the fever before surgery, we can give him steroids and stop it so that he can have surgery.
Thoughts?

bethsheba 02-04-2009 05:44 AM

Re: Who has used steriods with PFAPA?
 
Could you please tell people what a PFAPA is?

Without knowing what the above is, I would suggest that giving steroids may be dangerous...if there are any unknown bacterial infections (which can cause fevers) in the body, steroids would make the condition worse, and in some cases life threatening, as steroids suppress the immune system and the immune system is needed to heal the body.

I would suggest that some bacterial infections flare up in times of stress which may explain your child's physical reaction to the upcoming surgery.

Bethsheba

PS If it were my child, I would want to consider Lyme Disease before going any further...lyme is reaching epidemic proportions in NY state and along the coast. Despite this doctors lack the knowledge, the experience, and the tests to diagnose it. If you choose to go ahead with the surgery and the symptoms don't abate, and change consider lyme.

lotusseeds 02-05-2009 04:38 AM

Re: Who has used steriods with PFAPA?
 
My son was actualy diagnosed with the syndrome called PFAPA by a specialist , there are several threads on this very syndrome.

It is Aphthous Stomatitis, Pharyngitis, and Adenopathy. I have had my child tested for a host of other diseases including Mono and Lyme. Lyme is really prevelent in our area, you are correect. My husband had it last year. We have weighed all of the factors and we believe that given the severity, frequency and duration of his episodes every single month, every 22 days, it is in his best interest to have his tonsils and adenoids removed to prevent further episodes. The data shows about a 90% "cure" rate. A lot of doctors prescribe on dose steroids to prevent an episode, if surgery is not given. The syndrome occurs again, most often within weeks. I was considering asking the speciaist if he would consider dosing him if he was having an episode days before the surgery which is unfortunately scheduled during one of his episode due dates.
Thak you for your differnt view of the issue, I appreciate it.

bethsheba 02-05-2009 05:38 AM

Re: Who has used steriods with PFAPA?
 
[QUOTE=lotusseeds;3874783]...We have weighed all of the factors...[/QUOTE]

That is the key as you are making an informed choice! It sounds like you've got access to knowledgable and experienced health care providers, and that with your guidance, you son is in good hands.

I do hope your husband is well...just out of curiosity, how was the diagosis made? The tests are so inaccurate/inconsistant that many do not test positive yet repond to treatment.

Oh well, off topic...sorry!

Again, my best wishes for your son's speedy recovery!

Bethsheba

PS Thanks for the info you shared...

lotusseeds 02-06-2009 04:23 AM

Re: Who has used steriods with PFAPA?
 
[QUOTE=bethsheba;3874840]

I do hope your husband is well...just out of curiosity, how was the diagosis made? The tests are so inaccurate/inconsistant that many do not test positive yet repond to treatment.

QUOTE]

You are spot on. Even when people haveLyme disease, they do test neg. for a very long time. We were very lucky, my husband actually did get the classic target shape rash where he was bitten. It took two rounds of antibiotic. They just did another blood draw (6 months later) to make sure he is better. He is fine now, thank you!

bethsheba 02-06-2009 06:46 AM

Re: Who has used steriods with PFAPA?
 
[QUOTE=lotusseeds;3876091]We were very lucky, my husband actually did get the classic target shape rash where he was bitten. It took two rounds of antibiotic. They just did another blood draw (6 months later) to make sure he is better. He is fine now...[/QUOTE]

That is so very good to hear! Although you were very lucky, you have to give yourself credit for the outcome...there are many who deny the possibility and live with the consequences.

My thoughts and prayers for your son's speedy recovery, and to the continued good health of your husband and your family.

Bethsheba

SusanGD 05-14-2009 09:42 AM

Re: Who has used steriods with PFAPA?
 
[QUOTE=lotusseeds;3873573]My son was supposed to have surgery yesterday to remove tonsils and adenoids. The had to cancle because he had a PFAPA episode, but it was out of his regular schedule. They rescheduled his surgery for next week, but that is his usual schedule to get a flair-up. I was wondering if anyone has had a child with an extra flair-up and if anyone here has used steriods to abate an episode? I am thinking if he starts in with the fever before surgery, we can give him steroids and stop it so that he can have surgery.
Thoughts?[/QUOTE]
curious if you have been able to due the surgery. I have a 4 yr old girl that takes Prednisolone for her pfapa. the doctor's do not want to take her tonsils because she does respond to the steroid treatment. I wouldn't think steroid use would be a good choice right before the surgery however.

lotusseeds 05-16-2009 04:35 AM

Re: Who has used steriods with PFAPA?
 
[QUOTE=SusanGD;3984304]curious if you have been able to due the surgery. I have a 4 yr old girl that takes Prednisolone for her pfapa. the doctor's do not want to take her tonsils because she does respond to the steroid treatment. I wouldn't think steroid use would be a good choice right before the surgery however.[/QUOTE]


Actually they postponed his surgery for the following week. My doctor was kind enough to extend his surgery schedule to accomodate my son's needs. His doctor and anestheisologist did not want him on steroids pre-op. He also said that he did not think that long-term steriod use for his condition would be an option for us. They did do the surgery and he has been symptom-free for 3 months now! it is really wonderful to have a kid that is not sick every month. He is actually playing peewee lacrosse and we don't have to worry about missed games and practices. We don't have to get a 504 plan for school next year either. Looks like I have a normal kid on my hands :D

SusanGD 05-16-2009 07:12 AM

Re: Who has used steriods with PFAPA?
 
wow, that is fantastic. I have asked numerous times about taking my girls tonsils out and the same answer everytime. 'not a good idea'. I have never understood this, everone I know had their tonsils out when I was a kid, including me. how did the surgery go? any worries at any point? I don't get why it seems such a taboo thing to do these days?

lotusseeds 05-17-2009 04:47 AM

Re: Who has used steriods with PFAPA?
 
[QUOTE=SusanGD;3986343]wow, that is fantastic. I have asked numerous times about taking my girls tonsils out and the same answer everytime. 'not a good idea'. I have never understood this, everone I know had their tonsils out when I was a kid, including me. how did the surgery go? any worries at any point? I don't get why it seems such a taboo thing to do these days?[/QUOTE]

Most doctors will not suggest surgery for anything unless it is really necessisary. I think the ENT specialists are a little more on the side of surgery if they believe that it will help. My sibs and I had ours removed as a children in the 70's and I never saw an ENT specialist beforehand. I did have recurrent tonsillitis and looking back, I think that I may have had PFAPA for a year and my mother and ped ( who was not that good) never caught on. The general perscription then was tonsillectomy.
Have you been to the ENT specialist?
My son's surgery lasted 20 mins. My son had no issues. It was a great deal of pain for him. I did meds around the clock for 5 days straight. He had some food texture issues post op.He healed pretty fast and was back at school 9 days later. For his case, surgery was the best option. I must tell you it is pretty unnerving having your child put under. He responded well to the anesthesia, but a child two doors down had a very emotional recovery and screamed the entire recovery period.
The surgery personally cost me two lego sets and a few DVD's ;) Well worth it for my brave little man LOL!!!!

momwith4 10-16-2010 10:09 PM

Re: Who has used steriods with PFAPA?
 
my son has had PFAPA for 1 1/2 years, but was just diagnosed in the last month. He was given 1 dose of steroids just to seal the diagnosis. I was told that if the steroids work than it is definitely PFAPA. I agreed to try one time, he took it and it worked. He had a second episode within 3 days and it was worst, he also had a side affect of his eyes burning. I don't recommend giving your child this very strong drug. We are now looking into doing a tonsillectomy.

nlach 11-15-2010 09:24 PM

Re: Who has used steriods with PFAPA?
 
my daughter has the same thing. I want them to take her tonsils out but to no avail. she is 10 now and it started when she was 5. with an onset of her fever i give her prednisone. just one dose and it knocks the fever out. I was told she will grow out of it, but it has been 5 yrs now


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