PFAPA Moms

Re: PFAPA Moms

• realisticdreams member

  January 2012

  lilbugs momma:

  Are there any here? Our little pea just spiked a 103 (the reason I'm awake at this hour) I'm a nervous wreck. I hate having her go through this. I feel so helpless. She is such a sweaty baked potato, lethargic girly. She had a T&A but this is the first fever spike since the surgery. I?m running out of hope, we were hoping this was the solution to this pesky syndrome.  6 more days of fever are a head of us and I?m totally not ok with it!! UGG!! I would like to talk to other moms in the same boat just to hear some words of wisdom!

  :-*(

  Just wanted to say hi & thanks for the advice you gave me the other day.  M never broke out into a rash so I have a gut feeling our fever of unknown origin/immune issues could be moving towards this.  The thought of having to go through that again (Friday-Thursday, fever) makes me want to puke.

  Can I ask you what the T&A surgery was?

  I assume you see a great immunologist?

  I'm sorry, I just kept M's clothes off a lot of the time to help with the fever.  

  Hugs Hugs Hugs

  (Also, I hang out here most of the time). 

  DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

  
  

  DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3

  
  

  
  

  http://justthetipblogg.blogspot.com, The Neglected Blog.

  Report0 Reply
• Loading the player...
• ToastieSimons member

  January 2012

  We're currently in the limbo of PFAPA for 8 months DS spiked a fever (105-106) for 5 days every 2 weeks.  Then all of a sudden he got (what I presume was)RSV at Thanksgiving and we had our first fever but it only went to 103 last week followed by a molar so that may have been the cause this time.  

  We haven't done the T&A.  Do you see immunology or rheumatology?  We were instantly referred to rheumatology and he sees the T&A as a last resort.

  have you tried any medications?  We were prescribed cymetidine but haven't used it because we were waiting for the next fever and then the RSV happened and well we haven't had one. 

  I know there is another medication too which we discussed if the cymetidine didn't work but it has a higher incidence of side effects (GI issues).  He also said if the fevers didn't respond at all to meds he would go the route of doing some genetic testing.  There are a few disorders that can cause these fevers and DS has a rare mutation already so he said he didn't want to rule it out.

  To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
  

  Report0 Reply
• ToastieSimons member

  January 2012

  realisticdreams:

  lilbugs momma:

  Are there any here? Our little pea just spiked a 103 (the reason I'm awake at this hour) I'm a nervous wreck. I hate having her go through this. I feel so helpless. She is such a sweaty baked potato, lethargic girly. She had a T&A but this is the first fever spike since the surgery. I?m running out of hope, we were hoping this was the solution to this pesky syndrome.  6 more days of fever are a head of us and I?m totally not ok with it!! UGG!! I would like to talk to other moms in the same boat just to hear some words of wisdom!

  :-*(

  Just wanted to say hi & thanks for the advice you gave me the other day.  M never broke out into a rash so I have a gut feeling our fever of unknown origin/immune issues could be moving towards this.  The thought of having to go through that again (Friday-Thursday, fever) makes me want to puke.

  Can I ask you what the T&A surgery was?

  I assume you see a great immunologist?

  I'm sorry, I just kept M's clothes off a lot of the time to help with the fever.  

  Hugs Hugs Hugs

  (Also, I hang out here most of the time). 

  T&A is a tonsillectomy and adenoidectomy.  it's one of the "treatment" options for PFAPA.

  To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
  

  Report0 Reply
• realisticdreams member

  January 2012

  ToastieSimons:

  realisticdreams:

  lilbugs momma:

  Are there any here? Our little pea just spiked a 103 (the reason I'm awake at this hour) I'm a nervous wreck. I hate having her go through this. I feel so helpless. She is such a sweaty baked potato, lethargic girly. She had a T&A but this is the first fever spike since the surgery. I?m running out of hope, we were hoping this was the solution to this pesky syndrome.  6 more days of fever are a head of us and I?m totally not ok with it!! UGG!! I would like to talk to other moms in the same boat just to hear some words of wisdom!

  :-*(

  Just wanted to say hi & thanks for the advice you gave me the other day.  M never broke out into a rash so I have a gut feeling our fever of unknown origin/immune issues could be moving towards this.  The thought of having to go through that again (Friday-Thursday, fever) makes me want to puke.

  Can I ask you what the T&A surgery was?

  I assume you see a great immunologist?

  I'm sorry, I just kept M's clothes off a lot of the time to help with the fever.  

  Hugs Hugs Hugs

  (Also, I hang out here most of the time). 

  T&A is a tonsillectomy and adenoidectomy.  it's one of the "treatment" options for PFAPA.

  Ohh yes thank you.  I remember reading this now.  They kind of had ruled this out because M's fevers were normally only lasting 24 hours or so, until this last episode.  We did have a lot of the genetic testing for fever syndromes done though. 

  DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

  
  

  DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3

  
  

  
  

  http://justthetipblogg.blogspot.com, The Neglected Blog.

  Report0 Reply
• CCLoar

  February 2012

  I understand how you feel! My 23 month old has a periodic fever syndrome. We are waiting for genetic testing to come back. But she gets 105* fevers every 4 weeks. Its frustrating. We were in the hospital last week for pneumonia and it caused her to have a ton of arthritis pain What other symptoms do you guys notice? when did they start?

  

  Report0 Reply
• Kotmo

  June 2012

  Hi Guys,

   I am relatively new to this, my little girl started with the periodic fevers and has had it now 3 times exactly 6 weeks apart. During the first episode it went as high as 106.5 and has in subsequent episodes gone up to around 105. I feel so bad for her, she is in such pain during the episodes and we are still at the early stages but we are trying to get an appointment with an expert in Periodic Fever Disorders. We already met with a ID doctor who truly believes this is what she has, we have had so many throat cultures all being negative, tons of blood draws with elevation in CRP, ESR and Mono% during the episodes. Poor thing has been poked so many times. They are not sure if it is PFAPA or FMF. I am just sad that we all have to go through this with our little ones, it is so hard. My little one gets sick for 7 days so it is tough with pre-school and missing work. How do you all stay sane?

  Report0 Reply