Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 Thanks Liz, yes I am still on prednisone.. I am back on 5mgs. I go back to the rheumy on Tuesday.. So I will wait and see what happens with my results from the blood that I had done yesterday.. Kelley in Colorado Kelleyak31@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 Behave isn't in my dictionary, Liz. I think Superman had better get going and teach us other " Army " words. We've rucked ruck to death and need a new toy now. I think you're right about my WBC being high because of my surgery. At least I hope that's the reason. I'll know in a month when I go for another lab test. I keep losing weight for no rhyme or reason. Almost 20 pounds since we returned from California and I think I'm eating normally and maybe a little over normal. I'm wondering if it's because I'm almost off of my Prednisone and back now to my fighting weight. Prednisone made me eat like a pig and look like one also. It's nice not to have the fat face anymore. Has anyone else lost weight when they've really lowered their Prednisone dosage? xxoo, Carmen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Hi my name is , and I just joined the group. was diagnosed with Pfapa a month ago. She now has her first fever since the diagnosis. The doctor gave us a prescription for steroids but I did not use them because of some the things I have read on here. I also did not bring her in to the doc this episode. She does have the mouth sores and also talks like her throat hurts, but when I ask her if it hurts she says no. I still am having a really hard time believing this is real. I do have one question. Has anyone else had a high white count with these episodes. It seems like always has an elevated white count and the doctor wants to treat it with an antibiotic. The specialist told me not to let them treat her for anything unless they know exactly what they are treating. I dont even want to go to the doctor anymore. I feel exasperated and helpless. Can they diagnose Pfapa with a blood test or is it just a guess when they cannot find anything else???? T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 , Hi my name is and yes my daughter has high white blood counts also. She has been tested 4 times and all 4 times her count is high. My daughter is 21/2 and we['ve been doing these high fevers for 2 years now. I know what you mean by feeling helpless. But really, my specialist just said to give her Motrin every 6 hours and don't rotate Motrin and Tylenol on account of too much Tylenol can cause Kidney Failure. He said to keep them as comfortable as possible until next dosage of Motrin is do. He said that having a fever is not entirely bad for them. My daughter also gets mouth sores and she really doesn't complain that anything hurts either. I'm sure that is because she's loaded with Motrin though. white count Hi my name is , and I just joined the group. was diagnosed with Pfapa a month ago. She now has her first fever since the diagnosis. The doctor gave us a prescription for steroids but I did not use them because of some the things I have read on here. I also did not bring her in to the doc this episode. She does have the mouth sores and also talks like her throat hurts, but when I ask her if it hurts she says no. I still am having a really hard time believing this is real. I do have one question. Has anyone else had a high white count with these episodes. It seems like always has an elevated white count and the doctor wants to treat it with an antibiotic. The specialist told me not to let them treat her for anything unless they know exactly what they are treating. I dont even want to go to the doctor anymore. I feel exasperated and helpless. Can they diagnose Pfapa with a blood test or is it just a guess when they cannot find anything else???? T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Hi, It is extremely common to have an elevated WBC during fever episodes. As for Prednisone, it does work well and with just one dose for a few of the children. If it works like that it may be worth a try. If you see an increase in episodes ... stop it. As for not seeing a doctor... depending on how experienced you are with and with diagnosing... I urge all parents especially with YOUNG infants and toddlers to bring their child in to MAKE sure you are NOT missing anything else. Rarely with these children, another virus or bacterial infection just may sneak in.... Just be careful. You would not want to miss a walking pneumonia... a real strep infection which could lead to heart problems or a meningitis... Just a word of caution. I am not a pusher of steroids in any way... but for some people here who have had a really good response with a relief of fever and no increase in frequency... it may be a good thing. Also... don't forget Cimetidine... may also be worth a shot. Has your child had genetic studies?? God Bless Fran Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 >>> He said that having a fever is not entirely bad for them.>>> This is ABSOLUTELY NOT true and I would LOVE to discuss this with this physician. If the doc is ONLY talking about your child that is one thing... HOWEVER A child with or other fever disorders may run up to 108... and only come down a degree or two for up to 4 days of a fever episode. These children who have the more severe spectrum of this disorder will get severe febrile seizures... Fever is good when it is working to fight an infection and sending the white blood cells off to do their duty. But with these children... who get extreme fevers... if you HOLD Tylenol in between Motrin doses... they can BECOME EXTREMELY ill with seizures and organ failure. Tylenol must be given at the appropriate dose NOT to damage organs. Same with Motrin. But with children who get extreme fevers the parents and the physicians need to weigh the pros and cons... If a parent gives the medication every 6 hrs during the height of the febrile episode it is MUCH safer than allowing the temps to go up to 104-108. Fran Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Fran, You are more than welcome to cotact him. His name is Barson, a specialist at Children's Infectious Disease Department in Columbus, Ohio. He said that as long as you keep them comfortable as far as luke warm baths and cool packs, whatever you perfer the child will not go into febrile seizures. My daughter does get these fevers, granted her highest has ONLY been 105, but they last 4-6 days like that and just recently I have been doing the rotation, she has had no seizures and she has had them for 2 years now every 4 week on the day. I do know what it is like to spend a half hour in the shower with lukewarm water running over us, it is not fun and I have done this at 2-3am in the morning, having sleepless night after night and then going to a physically stressful job and returning to do it all over again for 6 nights straight. So for me to finally get some answers from a SPECIALIST that I like and I trust because I believe he DOES know what he is talking about, I do believe that having the fever for the time that they do have them between doses of Motrin is ok for them because a fever is obviously trying to fight of an infection. He said that in the American Pediatrics Association that iit is listed that you should rotate Tylenol and Motrin/Advil, BUT RECENT studies have shown that this could cause more damage than good. If you would like to discuss this with him his name is Barson @ (614)722-4450/4459. We just spoke with him yesterday. RE: white count >>> He said that having a fever is not entirely bad for them.>>> This is ABSOLUTELY NOT true and I would LOVE to discuss this with this physician. If the doc is ONLY talking about your child that is one thing... HOWEVER A child with or other fever disorders may run up to 108... and only come down a degree or two for up to 4 days of a fever episode. These children who have the more severe spectrum of this disorder will get severe febrile seizures... Fever is good when it is working to fight an infection and sending the white blood cells off to do their duty. But with these children... who get extreme fevers... if you HOLD Tylenol in between Motrin doses... they can BECOME EXTREMELY ill with seizures and organ failure. Tylenol must be given at the appropriate dose NOT to damage organs. Same with Motrin. But with children who get extreme fevers the parents and the physicians need to weigh the pros and cons... If a parent gives the medication every 6 hrs during the height of the febrile episode it is MUCH safer than allowing the temps to go up to 104-108. Fran Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Sorry to say it is UNSAFE NOT to medicate a child who runs temps over 104 and who do not drop more than a degree or two. It is dangerous to make a blanket statement. There are probably 60 percent of the kids in this group who spent nights in tepid baths... cool rooms, cloths on their foreheads and neck.... HOWEVER, their temps STILL do not respond.... UNLESS you alternate the medications. You were lucky that your blessed little one did not get seizures and responded without complications. After running this group and working in a hospital trauma unit, I do know of children who (including my own) who continue to get febrile seizures... continue to drop just one or two degree's with the Ibuprofen.... and hover between 104-108 during the height of their event.... We have and continue to .... spend night after night with our children awake... for a week at a time... All I am saying is there is NO blanket statement with these children... and many of the children definitely NEED to be medicated every 3 hrs alternating the antipyretics AROUND the clock for 3-5 days. Your doctor may know what he is doing for your child... and I am sure his statement is being taken out of context. Sorry if I offended you in any way... However I do not want people to be MIS-Informed.... about giving the Tylenol during peak febrile days.... every 6 hours. God Bless Fran Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 My daughter has also seen the all of the Doc's at Childrens in Columbus Ohio and my daughters pediatriction sent us to Cincinnati to see more Docs. They told me my daughter was not being harmed by the fevers as well. However I do not believe that to be true. Mom to Kiara 2 1/2 possible , Brady 4, and Chloe 6 Dublin Ohio __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 > > Hi, > It is extremely common to have an elevated WBC during fever episodes. > > As for Prednisone, it does work well and with just one dose for a few of the > children. If it works like that it may be worth a try. If you see an > increase in episodes ... stop it. > > As for not seeing a doctor... depending on how experienced you are with > and with diagnosing... I urge all parents especially with YOUNG > infants and toddlers to bring their child in to MAKE sure you are NOT > missing anything else. Rarely with these children, another virus or > bacterial infection just may sneak in.... Just be careful. You would not > want to miss a walking pneumonia... a real strep infection which could lead > to heart problems or a meningitis... Just a word of caution. > > I am not a pusher of steroids in any way... but for some people here who > have had a really good response with a relief of fever and no increase in > frequency... it may be a good thing. > > Also... don't forget Cimetidine... may also be worth a shot. > > Has your child had genetic studies?? > God Bless > Fran > Fran A Bulone > Mom to ph 6 yrs old > Waxhaw, NC > Owner & Moderator Group > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 > > Hi, > It is extremely common to have an elevated WBC during fever episodes. > > As for Prednisone, it does work well and with just one dose for a few of the > children. If it works like that it may be worth a try. If you see an > increase in episodes ... stop it. > > As for not seeing a doctor... depending on how experienced you are with > and with diagnosing... I urge all parents especially with YOUNG > infants and toddlers to bring their child in to MAKE sure you are NOT > missing anything else. Rarely with these children, another virus or > bacterial infection just may sneak in.... Just be careful. You would not > want to miss a walking pneumonia... a real strep infection which could lead > to heart problems or a meningitis... Just a word of caution. > > I am not a pusher of steroids in any way... but for some people here who > have had a really good response with a relief of fever and no increase in > frequency... it may be a good thing. > > Also... don't forget Cimetidine... may also be worth a shot. > > Has your child had genetic studies?? > God Bless > Fran > Fran A Bulone > Mom to ph 6 yrs old > Waxhaw, NC > Owner & Moderator Group > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 I have not posted lately because well to be honest work is crazy(I'm a sped teacher) and BReana is not doing well. While as parents we must all make our own decisions about medications and these can be very hard to make. I highly encourage parents to 'piggyback' Tylenol and Motrin when there child is fevering. High fevers can do more organ damage that the week of piggybacking the meds! Also I caution the use of the tub if your child's fever is very high as that could send him/her into shock if the water is to cool! be sure it is somewhat tempered! Also every time these kids fever they loose precious time socially and cognitively interacting with those around them. How can a child who is fevering every say 26 days and on the 'couch for 7 days' keep up socially emotionally and academics without a struggle????? Maybe some children can, but the fevers EFFECT THE CHILD in more ways than medical! I believe and so do Breana's doc's that yes the fevers can injure not just the organs but also the brain if left untreated. Breana can go to 107.8(last week) in 30 minutes or less. She has not had a febrile seizure BUT has been undergoing testing for seizures(without fever present).......Yes Breana has Nero issues not related to pFAPA and these issues could have been from an inflammation of the vessels in her brain which occurred in NOv. 04. What caused that It is unknown is it related to her CLINICAL TRAPS we do not now which is why we shall be spending at least one week at NIH next month. Ok just my thoughts From: C Sent: Wednesday, May 03, 2006 7:47 PM Subject: Re: white count My daughter has also seen the all of the Doc's at Childrens in Columbus Ohio and my daughters pediatriction sent us to Cincinnati to see more Docs. They told me my daughter was not being harmed by the fevers as well. However I do not believe that to be true. Mom to Kiara 2 1/2 possible , Brady 4, and Chloe 6 Dublin Ohio __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.