tag:blogger.com,1999:blog-9201002516725797662.comments2023-05-27T03:44:23.091-06:00Singing and SpinningAmyhttp://www.blogger.com/profile/16652844973442258951noreply@blogger.comBlogger869125tag:blogger.com,1999:blog-9201002516725797662.post-54875422001446146902014-10-01T21:01:43.429-06:002014-10-01T21:01:43.429-06:00Elizabeth - it has now been several years since Iv...Elizabeth - it has now been several years since Ivy's surgery. She did do the tonsils and the adenoids. We have not had a high fever since the surgery. We do still have "episodes" where she has other symptoms and may have a low grade fever (rarely over 100). We are so grateful it has worked. Amyhttps://www.blogger.com/profile/16652844973442258951noreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-2733157281474426322014-10-01T20:53:52.612-06:002014-10-01T20:53:52.612-06:00My daughter was diagnosed when she was 3 with PFAP...My daughter was diagnosed when she was 3 with PFAPA. She is now 11. We have been up and down on the roller coaster of fevers. Some years she was fever free. We have never used any steroids or meds except tylenol and motrin. I have always been afraid to give her the steroids. Just recently in the spring, she had recurring fevers every month. We decided she needed a tonsillectomy in July 2014. We did not have her adenoids removed though. not sure if that was a good or bad decision. She has been fever free since July. She did get a fever a day ago and it has been between 99 and 100. We are hoping this fever will end and no more will return. Any thoughts on other children who had tonsils removed and if there fevers returned?Elizabethhttps://www.blogger.com/profile/05718813015615533448noreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-303949761068953442013-06-24T20:36:42.897-06:002013-06-24T20:36:42.897-06:00We had the same problem that our daughter w PFAPA ...We had the same problem that our daughter w PFAPA threw up the prednisone. We just got new dissolvable tablets instead of liquid and those work!Karahttps://www.blogger.com/profile/11863621778712393405noreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-28702816530361856862013-06-24T20:36:28.766-06:002013-06-24T20:36:28.766-06:00We had the same problem that our daughter w PFAPA ...We had the same problem that our daughter w PFAPA threw up the prednisone. We just got new dissolvable tablets instead of liquid and those work!Karahttps://www.blogger.com/profile/11863621778712393405noreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-32938731887979957672013-05-03T23:55:53.927-06:002013-05-03T23:55:53.927-06:00My baby girl had 5 terrible febrile seizures due ...My baby girl had 5 terrible febrile seizures due to the fever spiking to 105-106 degrees. The last time she had a seizure (last year - April of 2012)we were on vacation in Brazil, where I'm originally from, but I live in the US). Since she had the fever while we were there, I took my little one to my pediatrician (from when I was a kid 3 decades ago), Dr. Avelino Neta Ramos. He ordered some lab work and while my baby girl was having her blood drawn, Dr. Avelino did some research on PFAPA and learned that the syndrome does not respond to tylenol nor motrin, so once he got the results back, and as always, the results are always normal with the exception of the white blood count which is always high during the episodes, he prescribed me an over the counter medicine called Dipirona Sodica. <br />IT WAS LIKE A MIRACLE HAD JUST HAPPENED!!! As soon as she took the medicine, her fever started to drop, I couldn't believe my eyes, I've cried with joy. The medicine is used for fever and pain, just like acetaminophen and motrin, however, besides it being more natural with less to no side effects, it can be used for a lot of other treatments. Also, I would administer every 6 hours, instead of every 3 hours (from alternating tylenol and advil, which is so bad for the liver/stomach), and on top of that, the fever that used to last an average of 5 - 7 days, reduced to 1 - 3 days. Hence, when I returned to the US, I brought a lot of the Dipirona Sodica with me. <br /><br />At that time, I had a next-door neighbor who happened to be a pediatrician as well as a clinical doctor. When I returned from Brazil and talked to her about the Dipirona Sodica, she said she was vey well acquainted with that medicine since she had gone to Haiti as part of the Doctors without Borders' team, to assist when the earthquake happened. She said that there were a lot of injured people that needed care, and Brazil had donated a large supply of Dipirona Sodica, which was used to treat just about everything, and according to her, worked wonders. I've asked her why that medicine was not FDA approved in the US, and she said that if Dipirona was approved in the US, it would destroy Tylenol and Advil, which are big brand names, with big companies that pay big bucks to the FDA. I can't prove that, but it makes perfect sense. Dipirona can be found in many countries in Europe, South America, Africa, but not in the US, such a shame.<br /><br />As a parent, I had to share about this medicine, as I grew up taking it and couldn't imagine that it would give me sanity/relief after so many sleepless nights taking care of my baby. Now when she has her fevers, at least, I can be rest assured that her fever won't go any higher than 101-102 - the average is 100-101 and she won't ever have another seizure. She can sleep better and doesn't have to be woken up every 3 hours to take medicine. From the bottom of my heart, this medicine really made a difference in our lives. For any parent who is looking for an alternative, this is one that works, at least to really control the fever and reduce the frequency.<br /><br />Anyway, I've also continued with the cimetidine treatment, which seems to be working, slowly. About 2 months ago I took my little one to see Dr. Jantausch, and while we were talking she said that new researches presented different results for the tonsillectomy, saying that it is not so effective as it was thought to be, as more and more people who had the tonsils removed are experience and thought were cured, ended up experiencing the episodes again, on a monthly basis.<br /><br />Should anybody have any questions, please let me know, and I'll gladly share information.Anonymoushttps://www.blogger.com/profile/00365523826399551916noreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-86614770768534278512013-05-03T23:55:14.644-06:002013-05-03T23:55:14.644-06:00My baby girl was diagnosed with PFAPA when she was...My baby girl was diagnosed with PFAPA when she was 9 months old (July 2011). As all of you know, the fevers are high and don't respond to acetaminophen nor motrin. However, whenever my baby girl had her monthly fever, I continuously administered tylenol and motrin, alternating every 3 hours during 4 to 7 days, with the hope of controlling the fever, and yet, her fever would spike resulting in horrible febrile seizures (traumatic for a parent to watch, especially when it's a baby). I had taken her to every possible hospital (Harbor Hospital in Baltimore, University of Maryland, Johns Hopkins, Kennedy Krieger Institute, Mercy Hospital and Nation's Children's Hospital in Washington DC) as well as specialist such as hematologist, rheumatologist, neuro pediatrician, immunologist, allergist, infections disease specialist, and finally she was diganosed with PFAPA by Dr. Barbara Jantausch, an infections disease specialist at the <br />Nation's Children's hospital in DC, who does research with the NIH and is very well acquainted with the syndrome. At first she explained the 3 most common types of treatments:<br />1. steroids (prednisone) - which she did not recommend, as although the fever would end quickly, the frequency would most likely increase, plus, it's steroids, which are never good for you, let alone for a baby.<br />2 - tonsillectomy - she said that it was the most efficient form of treatment with 80-90% chance of cure, but knowing that my little one was just a baby that wasn't even 1 year old yet, her body/immune system was still developing, that was out of the question, definitely not an option at that moment for me.<br />3 - Cimetidine - she explained that cimetidine was an anti-acid commonly used to treat ulcer that was all about 1/3rds to treat PFAPA, that is, 1/3 chance that would cure completely, 1/3 chance that would decrease the number of days/frequency, and 1/3 chance that it would not work at all, but this was the form of treatment that she suggested me to start with.Anonymoushttps://www.blogger.com/profile/00365523826399551916noreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-16797928871033675322012-07-20T09:37:04.324-06:002012-07-20T09:37:04.324-06:00To BCOBY:
Patrick here - I have some posts above ...To BCOBY:<br /><br />Patrick here - I have some posts above and had a son who had PFAPA. I read your post and have been through what you are feeling. I have a couple of thoughts for you.<br /><br />1) Most importantly, it will get better. We didn't figure out what my son had til he was 10 and we discovered PFAPA on our own. You are way ahead of the curve. <br /><br />2) there are potentially more options out there than even three years ago. In addition to surgery, some people seem to be having a lot of success with Ankira. See the above posts. That being said, our son had surgery and has been healthy as can be since...<br /><br />3) Keep pushing PFAPA with your doctors until they rule it out (I don't think they will since what you describe screams PFAPA). Chart your daughter's fevers to make your case. I can't stress how important it is to keep this up because when we went through it our pedi hadn't even heard of PFAPA.<br /><br />4) Just my opinion, but your doctor's approach to the fevers is typical and not helpful in diagnosing the problem. If it is a virus, why prescribe an antibiotic? This was one of the things that drove us crazy. When we didn't use antibotics, the fever would go away in five days and we were told it probably was a virus. When we did use antibiotics (cue the guilt music) the fever would go away in five days, and we were told it was probably and infection that didn't show up on any tests.<br /><br />5) Find someone in your area who specializes in PFAPA and get an appointment. <br /><br />Hang in there. My guess is this time next year you will have figured out the issue, and everything will be in the past. <br /><br />Keep us posted.Patricknoreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-14062682067303991402012-07-06T20:04:02.115-06:002012-07-06T20:04:02.115-06:00My 10 month old daughter was tentatively diagnosed...My 10 month old daughter was tentatively diagnosed with PFAPA after 4 months of recurring fevers and sore throat. I kept taking her into the doctor every month because she was just miserable. The doctor would say it was a virus or give me an antibiotic. My daughter had 2 false positive strep tests which upon growing the culture out, proved to be negative. This last month, her fever was 105.7 and her throat was red, swollen and had patches of white pus on it. My heart is broken that she may have to go through this every month for years. My pediatrician referred us to an Infectious Disease specialist that we have an appt. with the end of this month. We pray that they will be willing to recommend that she have her tonsils removed sooner than later. I just can't imagine going through years of her feeling crappy every month. I am a stay at home mother, so I don't have to deal with the stress of taking off work every month, but I do feel guilty that my 4 year old child doesn't get the attention and care she needs when my baby is suffering through one of these episodes. <br />I have read info. on Marshall's Syndrome which speaks to physical characteristics which are common for the syndrome. I am wondering if any of you with children who have PFAPA see these characteristics in your child?Bcobyhttps://www.blogger.com/profile/02595449427017832760noreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-8411162572451812742012-06-20T19:40:08.190-06:002012-06-20T19:40:08.190-06:00Reading all your experiences I love sons person do...Reading all your experiences I love sons person doctor even more. My 4yr old son has been experiencing episodes for 4 mos but today she sent us off for bloodwork and we have an initial diagnosis of pfapa. Our appetite with a Enter specialist at children's hospital in Boston is the endofAugust. Reading all the posts I will be sure to ask for his tonsils removed. Zachary starts school in the Fall and I donot want him to miss a Ak every month. And as a singleparent I am afraid of losing my job due to needing a sk a month off. Thank you all for sharing you stories.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-794297242784722652012-06-05T19:04:33.115-06:002012-06-05T19:04:33.115-06:00I see that people are still posting to this and I ...I see that people are still posting to this and I wanted to add my son's story as well. His story is like sooo many others I have just read here. He is 16 months old right now, and has been experiencing high fevers (103-105 degrees), mouth ulcers, red throat, occasional vomiting every 4th week of each month since he was 8 months old. The episodes generally last 5 days, on a "good month" only 3 days. He has repeatedly tested negative for bacterial infections, and other known "germ" causes have been ruled out at this point. He never has any type of ear infection, cold, cough, etc. He will be tested (bloodwork) for markers for PFAPA when the next episode occurs in approx. 2.5 weeks. We have been able to accurately predict them to a weekend that it will begin - and 2 days prior we know that it will be coming due to a change in his sleep (he is awake almost the entire night with only a few hours of day sleeping for 5 days straight), diet (he barely eats a thing through the entire episode) and behavior (screaming, crying, kicking). His eyes change and habits also change - as noted in your initial story with your daughter. It's a glassy-eyed sad eyes. A totally different child. My son is just learning to use words - so we are unable to know for sure what is going on other than what we can physical see and measure at this point.<br /><br />I am hoping to get into a pediatric rheumatologist for better support, as we had to specifically ask that he be examined for other causes for the fevers, since we were being brushed off at the pediatricians each time it happened. The last pediatrician we saw, when pressed about another cause, and reminded that his mother (myself) has lupus and we were concerned with an autoimmune type of condition, truly believed us and has pushed for more testing.<br /><br />I will be seeing my rheumatologist this week, and I hope to discuss my son with him, and I hope to get him into the office to get some help and direction. From what I read here - it really looks like removing his tonsils when appropriate (also a procedure I needed as a child), is the best bet to decreasing/ending the episodes. So an ENT is probably on the list of people to see. <br /><br />The more I read about other families' stories the more I see that this condition is probably going to last the duration as described in the educational informational Websites I have read, and the sooner I can find the best option to decrease these episodes the better off we will all be. <br /><br />Thank you all for your posts and stories. It helps to know we are not alone, as it sometimes seems when you are going through repeated episodes.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-87495907239343448902012-05-26T06:12:07.921-06:002012-05-26T06:12:07.921-06:00I need help please. My son just got diagnosed wit...I need help please. My son just got diagnosed with PFAPA I'm not sure what to think at this point and really would like someone to talk to on the phone. My email is patricia06140727@yahoo.com. If you email me I can give you my number. I really need some advice.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-32508376473771429032012-04-20T10:24:02.778-06:002012-04-20T10:24:02.778-06:00So my update... I posted "amy" on 3/08/2...So my update... I posted "amy" on 3/08/2011 10:19:00 AM about my daughter and her PFAPA. Very pleased and relieved that she has now had her T&A removed at the end of March of 2012. A year later she had been in and out of hospitals about once a month. The fevers got worse, on occasion it had peaked at over 104 and were sustained for 3-5 days at 101 or better. So after surgery... So far so good. She pulled through like a champ. Doctors said her tonsils were REALLY bad, a lot larger than expected. Her adenoids were bad as well, even though she didn't have a snoring problem. I am so glad we made the decision to remove. I would do it again in a heartbeat. I am pleased that the doctor was not at all hesitant about removing her tonsils. Her very first appointment with her pediatric ENT, he took one look and got a run down on her other symptoms (sores in her mouth) and said surgery. He explained that he could put her on steroids, or low dose antibiotic if I was more comfortable, but he recommended surgery. Two weeks later surgery complete and she is SOOOO Much better! Praying that I am not speaking too soon, but so far she hasn't had a fever since February!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-37934296907802748052012-02-08T11:04:22.397-07:002012-02-08T11:04:22.397-07:00Thank you for all the information. My 4 year old ...Thank you for all the information. My 4 year old daughter was just diagnosed with PFAPA. Her fevers have been twice a month for over a year now. After many trips to the pedi, blood work, cat scan, etc. they have finally diagnosed her. <br /><br />I have learned alot from reading everyone else's experiences. I am going to push for t/a removal. She is starting school in the fall and I worry about her missing every other week. I will need to consider home schooling if the fevers continue...<br /><br />Thank you for the information!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-67777739762765784752012-01-26T11:41:36.201-07:002012-01-26T11:41:36.201-07:00Here's our story...
In October 2006, after mon...Here's our story...<br />In October 2006, after months of frequent fevers in our 3yo and being told each time it was a virus because he goes to daycare, a dear friend and I began simply researching the internet for possible causes. We are located in NC and came across a doctor at Duke, Dr. Ross McKinney, whose clinical interests are in "fevers of unknown origin," FUO. I called Dr. McKinney's office and spoke to a PA who suggested I look into PFAPA because the symptoms where similar to what I had described. The good news was IF he was diagnosed with PFAPA, it is benign and that he should grow out of it.<br /><br />I called the daycare and began putting together a history of this condition in my son. He ran 102-103 degree fevers every 4 weeks lasting approximately 3 days each. I was able to say with certainty it began at least 11 months prior. Armed with that information, we went to meet with Dr. McKinney. <br /><br />We met with two doctors at Duke who spent lots of time with us. The first doctor, Dr. Cohen, took down details and examined our son for about an hour. Then he discussed his observations (they already had his medical history) with Dr. McKinney and they both came back and talked with us for another 20 or 30 minutes. Dr. McKinney was convinced that our son had PFAPA based upon the history of his fevers and needed no further testing because we had already done the immunity tests the prior December and had CBCs run back in July 2006. He gave us a prescription for Prednisone and instructed us to give him one dose the first day of his next episode and then one more the following morning. The dosage was the same as if he had poison ivy. Dr. McKinney wanted us to do this for the next two episodes to confirm that his diagnosis is correct in our minds (he was already convinced). He was right. The Prednisone stopped the episode within hours of giving it to him. Though the fever went away nearly immediately, it returned 2 weeks later. At that point, we decided only to use Prednisone if the fever was at an inconvenient time because Motrin was fairly effective for our son.<br /><br />At the time, Dr. McKinney said PFAPA was still a fairly rare syndrome however, they get about 1 new patient per month. Since diagnosis, we have had several people ask us about it because they know others experiencing similar issues. <br /><br />Our son is now 9. He has not had an episode since July 2008 and we are very grateful. We understand the helpless feeling when your child is suffering and you don't understand what is happening. For us, it was a blessing to receive the diagnosis of PFAPA. There are so many worse conditions that we could have faced. We hope others continue to share their stories and we wish you all the best.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-45552074848359632042012-01-24T15:58:32.866-07:002012-01-24T15:58:32.866-07:00My daughter has fevers just about every 4 weeks bu...My daughter has fevers just about every 4 weeks but for years it was thought to be allergies causing sinus infections. We had her adenoids out with sinus surgery in June and it helped tremendously but then started back in November with fevers. Her fevers are not high usually 99.5 and last for more than a week, usually 10 days or so. She never complains so we don't know if she has headaches or stomachaches - maybe she has them all the time so thinks its normal?The ENT said today that wondered about PFAPA so we're to read the information and get back with him. Does her lack of other symptoms seem like it wouldn't be PFAPA? Her tonsils are now enlarged with a few spots on them but nothing major. Any advice is appreciated.Jeff and Karenhttps://www.blogger.com/profile/12465702188711077744noreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-60739765311288961542012-01-07T10:25:14.282-07:002012-01-07T10:25:14.282-07:00Thank you for creating this wonderful Blog...want ...Thank you for creating this wonderful Blog...want to share my story...my daugther just turned 10 year old in January 1st, she was a very healthy kid until last April she had a constant fever for almost 26 days, ended in the hospital, the fever went away and she got it back every three weeks for 4 months, after so many visits to different doctors her rheumatoid arthritis specialist decided to start on prednisone to diagnose her with PFAPA, I was not happy about her talking steroids, in the mean time I found that also few kids had been cured with PFAPA getting treatment from an upper cervical chiropractor, one of my friends suggest to me to see a physical therapist at this point I had nothing to loose and I went to see her, after her first treatment I noticed her fever last only two days and it was not high as usual (104-105) then the next month it came back for 6 days but didn't exceed more than 102, until they were gone, this treatment is call Myofascial treatment, it's very gentle and works around the Fascia in your body, the inflammation on her body went away, please search and google about Myofascial and PFAPA you'll find a lot of information, now my daughter's rheumatoid arthritis specialist is very interested and want to research more about this, the bottom line is that it worked for her, the inflammation that cause the fever every three weeks exactly (can even predict the time) is gone and that is the most important thing.<br />Now she is fever free for 4 months and I hope it never came back. The weird part is that kids grow out of this most of the time at the age of 9 and 10 and my daughter got it at the age of nine, she went through so many tests and always negative, doctor always said is a viral infection. Only the two doctor listen to me and were great giving me feedback and willing to diagnose her with PFAPA the rheumatoid arthritis specialist and the infectious specialist, the other doctor's just walk away.<br />Do not sit and wait for doctor results, do your research and you'll be surprise how much information you can find. If your are interested check the following web sites:<br />you are not alone!<br />http://stop-periodic-fever.blogspot.com/2011/05/pfapa-cured-periodic-fever-gone.html<br />http://www.myofascialrelease.com/fascia_massage/public/default.asp<br />http://wiki.answers.com/Q/What_are_the_treatments_for_Marshall_Syndrome<br />http://pedsinreview.aappublications.org/content/30/5/e34.extractAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-74928686746508167502011-12-17T07:47:13.418-07:002011-12-17T07:47:13.418-07:00Hi Amy, I previously posted about as "Lauren ...Hi Amy, I previously posted about as "Lauren W." Thank you for commenting back. I took your advice and my son saw the ENT last week. He agreed to do T&A and PE tubes at the same time. I'm so happy. His surgery is scheduled for January 9. I just hope he is fever-free that day or they won't do the surgery and he'll have to wait longer. I went back and looked at my calendar noting when fevers started and it's every 19 days most of the time; sometimes up to 21 days. He's due for another episode this Thursday or so and surgery is going to be cutting it close to the next fever episode. Anyway, we'll see what happens. He still has an appointment with Infectious Disease at Children's Hospital next week and we decided we will go there just in case we run into any issues with the fevers coming back after surgery. <br /><br />I appreciate your blog very much and everyone's comments/advice. I will comment again down the road in a few months after surgery is over and he's hopefully doing better with an update.LoWohttps://www.blogger.com/profile/07233461883608529620noreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-17961846120082554332011-12-16T12:32:37.689-07:002011-12-16T12:32:37.689-07:00Fun pictures!
Happy blogoversary :)Fun pictures!<br /><br />Happy blogoversary :)Teena in Torontohttps://www.blogger.com/profile/14875608173791872449noreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-13189165249287720362011-12-13T16:36:23.138-07:002011-12-13T16:36:23.138-07:00Thanks Amy for writing me back! I was waiting to h...Thanks Amy for writing me back! I was waiting to hear what ENT would say and today he agreed to the "blue plate special": tonsillectomy, adenoidectomy, and PE tubes all at once. I'm so happy! I definitely understand it might not be a cure, but I'm happy to try. We will hold off on seeing Infectious Disease until the surgery is over and see how he does. I'll write back again down the road and let you know how it goes. Thank you so much for your blog.Lauren Wnoreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-16793922299652224652011-12-10T23:20:04.805-07:002011-12-10T23:20:04.805-07:00My daughter's pediatrician just gave her a pre...My daughter's pediatrician just gave her a preliminary diagnoses of PFAPA. She is 2 and began having fevers on a regular basis 3 weeks after she got a combined vaccine. She has been getting them for 8 months now . . . anywhere from 3 weeks apart to 2 months apart. It breaks my heart to see her suffer. I was wondering if anyone else noticed a correlation between vaccines and the onset of PFAPA.msimpsonhttps://www.blogger.com/profile/06916668497757760159noreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-69354567140933715492011-12-05T20:56:50.033-07:002011-12-05T20:56:50.033-07:00Lauren - If the ENT will do a T&A I would go f...Lauren - If the ENT will do a T&A I would go for it. The benefit of an infectious disease doc is just that he can look at your son as a whole and rule out any other illnesses. Just remember the T&A isn't a guarantee. <br /><br />Good luck with your son and I hope he is healthy and talking up a storm soon.<br /><br />Vanessa - Did your daughter have the T&A? I struggled so much with all of the different medications they wanted to try on Ivy. And each one we tried would improve her situation for a few months and then it would get back to fevers every 3 weeks. 107 was our highest as well. I shutter when I come across my "fever journals" and am just amazed when I look at her blood test results.Amyhttps://www.blogger.com/profile/16652844973442258951noreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-26270891966612393862011-12-05T20:33:26.274-07:002011-12-05T20:33:26.274-07:00This is a great blog. I appreciate reading your st...This is a great blog. I appreciate reading your story and everyone's comments. My son started getting a recurring fever every 3 weeks 7 months ago. He also has a severe speech delay due to motor planning issues. He is 20 months old and has never said a word. Last month his doctor mentioned PFAPA and referred us to an ENT. We are seeing the ENT next week for a consult. My son's high fever and drooling are back this week so I called his doctor just to update him. Now he wants my son to go to Infectious Disease for a consult. I just want the tonsils and adenoids out! Would it be a bad idea in your opinion to have the T&A before he saw Infectious Disease? His doctor had originally told me ENT would do the tonsillectomy since he has had 6 recorded cases of tonsillitis in 6 months. I just don't want to wait any longer. It takes so long for referrals and appointments to happen. My son goes to speech therapy and he never gets anywhere because he is so often sick. I want him to talk, I want him healthy, I just want my boy to live a normal life.Lauren Wnoreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-42453209981538169022011-11-18T11:08:06.172-07:002011-11-18T11:08:06.172-07:00My daughter does have a re-occurring fever. Now I ...My daughter does have a re-occurring fever. Now I am worried she might have this. I will have to schedule and appointment with her <a href="http://www.entnynj.com" rel="nofollow">ent doctor</a> and get her checked out.RHursthttps://www.blogger.com/profile/01339829741762971657noreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-55077581365395240272011-11-03T13:46:28.238-06:002011-11-03T13:46:28.238-06:00To Patrick.
My daughter is nearly five and was di...To Patrick.<br /><br />My daughter is nearly five and was diagnosed with PFAPA when she was 6 months old. We went through all of the same issues as the rest with our daughter her highest fever was 107.2!! The doctor tols us to stop taking her fevers as it really didn't matter how high it got. My daughter is a patient at the National Institute of Health Peds clinic in Bethesda, MD. She was put on anakinra in July 2011. It has worked well for my daughter when the prednisone did nothing for her.Vanessanoreply@blogger.comtag:blogger.com,1999:blog-9201002516725797662.post-83819133452408301312011-09-16T07:17:31.482-06:002011-09-16T07:17:31.482-06:00those are seriously cute dance clothes for kids - ...those are seriously cute dance clothes for kids - where can I find out about them.Jeanhttps://www.blogger.com/profile/16593215522430885435noreply@blogger.com