Click Here to Visit our Sponsor
|
 HealthBoards Bulletin Board
 Rare Disorders
 PFAPA
|
 Email This Page to Someone! |
next newest topic | next oldest topic |
| Author | Topic: PFAPA | Page views: |
|
MOMFL Junior Member  Posts: 16 |
posted 05-11-2002 10:17 AM
  
My 5-1/2 year old daughter is currently being tested, by a series of blood draws, etc... to see if she has the P.F.A.P.A. syndrome. If she does have this, does it mean when she gets fevers, she is not contagious to others, like a virus ? Could she have acquired this through the DTP vacination, the "P = Pertussis" part since it contains mercury ? I had her doctor prescribe Emla cream to numb the area on her arm where she will be receiving numerous blood draws. It seemed to work yesterday. Just thought I'd mention the cream in case any other children are in need of this. Your responses are appreciated ! IP: Logged |
|
DDekruif Member Posts: 59 |
posted 05-13-2002 01:27 AM
I'm interested to know why your child has to have so many blood draws.My son has been checked for many things causing periodic fevers and has never needed to be poked so many times you have to numb the arm.He had started at age 4.Generally they can draw once and use the serum and whole blood for numerous tests.My son is dealing with a genetic periodic fever. I hope other parents that have periodic fevers respond due to the fact that we are dealing with two similar but different things.Make sure the sed rate is elevated, C-reactive protein,and the all immunoglobulins are check especially the IgD.I suggest you go to an immunologist,If the infectious diseases have been checked out.Research info on periodic fevers. There are dozens of reasons for them. But be prepared, some info can scare you. Good Luck Denise IP: Logged |
|
MOMFL Junior Member Posts: 16 |
posted 05-13-2002 10:54 AM
My daughter saw an immunologist specialist last week at the All Children's Hospital in St. Pete. They told us if she has this Periodic Fever Sydrome (PFAPA), her white blood cell count should go down every 3 weeks. So, she is having two CBC blood draws done per week for 6 weeks. At the first blood draw, they did additional blood tests, including the tests you mentioned in your post. They also did a chest x-ray which came up clear, they wanted to rule out walking pneumonia. From what I read, some of the primary immune deficiencies effect the lungs. She's been getting fevers approx. every 2 weeks now. Usually with swollen tonsils, which always test negative for strep. Except for 1 time when she had scarlett fever, which is strep with a rash. We will return to the specialist toward the end of June. When her pediatrician prescribes her antibiotics, they do not seem to work, she also got sick again a few times while on the antibiotics. For your son, did the doctors prescribe a steroid for him to take every time he gets a fever ? Our doctors told us that if she does have this, the steroid would help bring her white blood cell count up quickly. IP: Logged |
|
DDekruif Member Posts: 59 |
posted 05-13-2002 02:13 PM
My son has HyperIgD.We are trying to pinpoint which exact syndrome.This is genetic.Some of these have just been discovered in 1996 in the USA. We are testing for Immunoglobulinemia D,Med.Fever,Hiberian fever(TRAAPS).We are lucky the fevers are every 6-8wks and last only 48hrs.The immunologist does not know if they will increase to 7 days with swollen joints,vomiting,diarreha,rashes.We have not been on steriods.Who knows if they will do any good.With these syndromes they have to find the gene causing the problem to stop the attacks. Since amyloidosis is a problem with these syndromes,it is very important to stop this process.It doesn't matter how often,how severe,how long,a multi-systemic shutdown is a given. We go back for more testing in two weeks.That's why I'm on the healthboards just to make sure some parents are not given a generic term.Our doc kept saying its viral.4 years later..Can you image not checking into this more and hit adulthood,it might have been too late. Contact the other parents on this healthboard under Rare disorders,periodic fever. Some are not listed but they talk back and forth on just a couple of listings.They are wonderful people and are very helpful!I think most have the same thing you are dealing with. God Bless Denise IP: Logged |
|
DDekruif Member Posts: 59 |
posted 05-15-2002 01:39 PM
I wasn't trying to turn you off. I thought you will get more good out of someone that is dealing exactly what you are dealing with. Let me know how your child is doing. I don't know where everyone is at but I put out a reply to see if any will respond. Having fevers that often is got to be hard. Isn't it the truth,you would do anything to change places with your child. If you are having frustrations, vent here. I have and still are going thru some emotional issues. Prayers for us.Denise IP: Logged |
|
MOMFL Junior Member Posts: 16 |
posted 05-15-2002 04:29 PM
I didn't take your post that way. I've been just very busy, like all moms. I did read the other posts concerning the periodic fever sydrome. Actually, the immunology specialist called me back today, I was surprised because I was just trying to get a copy of the 1st blood draw results that contained a lot of different tests. Anyway, he said so far all her tests and CBC's have been normal. When she got the blood tests done, she wasn't sick for one week. I'm assuming I'll get my copy in a day or two. The last time my daughter started a new fever was 16 days ago. The time in between fevers, before the last time, was 2-1/2 weeks. So, I'll wait to see what happens. Last night I was looking up homeopathy on the internet because my friend keeps telling me to see her chriopractor who I think does homeopathy. I myself go to a chriopractor occasionally, but I'm leary because my doctor has never heard of her doctor and my doctor has been in town for at least 30 years. Also, her pediatrician doesn't think she's contagious when she is sick, since my other daughter who is 4-1/2 never catches what my 5-1/2 year old gets. I'll keep you posted, and keep your family in my prayers. IP: Logged |
|
Sheryl Lagge Member Posts: 25 |
posted 05-16-2002 10:52 PM
I was reading on your healthboard about your child getting a fever ever two weeks and has not quite been diagnosed with Pfapa yet. My daughter, Jessica is 3-1/2 and has Pfapa. Her fevers are every two weeks also. She is being treated with a steroid. Along with her fevers she has aches, and soar throats. I'd love to compare notes with yours and my childs health history. I wish you and your family the best of luck and some how find peace in your life. God Bless! Sheri IP: Logged |
|
MOMFL Junior Member Posts: 16 |
posted 05-17-2002 10:16 AM
I think my daughter is getting sick again, her temp. was low grade today and yesterday after school. I was hoping since all her blood tests were supposedly normal so far, that maybe this isn't what she has, and maybe she was just catching viruses. We have plans this weekend with friends and their kids, and I was really hoping she wouldn't be sick this weekend. When she is sick, she either gets fevers or fevers with swollen tonsils, that always test negative for strep. From what I can remember, she got tonsillitis two times last spring. Then at the end of October, my other daughter and I got the stomach flu, then my 5-1/2 year old started getting sick constantly after that. At first we weren't sure if it was because she's in Kindergarten this year and possibly catching a lot of viruses. But her sister is 1 year younger and never caught any of her illnesses. She is lucky that she is still one of the smartest kids in her class, even though she has missed 23 days because of illnesses. She missed a few other days when my Dad died last winter from a long illness of Alzheimer's. I actually should have kept her out more days. So, we are hoping we can get this resolved before she starts 1st grade so she doesn't have to miss so many days. Last night was really the first night she complained of an ache in one of her legs, but, she was also tired. My 4-1/2 year old complains sometimes of leg pain, but the doctor calls it growing pains. I've heard of friend's kids complaining of this also, I'm hoping it's not anything serious, like posiibly rhuematoid athritis or anything else. When your child had blood tests taken, did the levels show up low ? In March my daughter had some blood tests taken, the ones that were low at that time, her pediatrician wasn't really concerned with because she was sick at the time she had the blood drawn. So I'm curious to see those same test levels from about 1-1/2 weeks ago. I'm including all of us in my prayers. It's scary how so many diseases can be genetic. I myself have been taking special vitamins for about a year so hopefully I won't get Alzheimer's, the funny thing is, noone in my Dad's family before him had it. So, even with the steroid medicine, your daughter gets sick every 2 weeks ? How is the steroid taken ? IP: Logged |
|
Sheryl Lagge Member Posts: 25 |
posted 05-17-2002 01:58 PM
We give my daughter 5mg. of the steroid by mouth and it is a liquid normally only once. When we started being curious over Jessica's condition we took her in regularly for strept and they always came back negative. In fact now that she has had all the scarey diseases eliminated everything else has come back negative also. The two things that are always elevated are her sed rates and her HHPV which is something in the herpe viral catagory. Everyone has the virus but hers is slightly elevated. You won't ever be able to put your mind at ease until you eliminate all possibilities. If her fevers are like clock work and seems to have the same symptoms every time then I would persue the PFAPA testing. What started our mission was that I thought once you had a virus it would not come back but it seem to continue to be the same symptoms everytime?? Do you have a Children's hospital near you? Take care !!!! Sheri IP: Logged |
|
bgrg75 Junior Member Posts: 8 |
posted 06-12-2002 01:01 AM
my son has had fevers upto 105+ every four weeks since he was 1 and know he is three and we have had him to doctors up to the level of pediactric infectious disease specialist and have had no diagnoses any info will help there are no signs of any cause help IP: Logged |
|
DDekruif Member Posts: 59 |
posted 06-12-2002 07:13 PM
We had a family here that was going through periodic fevers and the doctor removed the tonsils and it stopped the fevers. This child too had no strep but the doctor felt it was worth a try. You are not dealing with virus'. You might get a virus from after the fever. It is called getting a secondary sickness. Have you ever been really sick then turn around and get something else? I believe virus can cause periodic fever. My sons fever was low grade or would come and go for 24 hours then elevated and disappear. The whole thing lasted 48 hrs. Don't let the doctors tell you it is just a virus. I went through two years of that crud when I discovered the fevers were cycling. I had never heard of these fevers. It would have saved us 4 yrs. of frustration.Listen to Sheri. She knows. Prayers for us...Denise IP: Logged |
|
Sheryl Lagge Member Posts: 25 |
posted 06-13-2002 09:21 AM
Dear bgrg75. Start documenting your childs fevers. And notice if his symptoms are all the same, always. You will have to go through numerous of tests to out rule anything really bad, but our final doctor was an immunologist and he made the final diagnoses as periodic fever syndrome. Maybe you can skip all the needles and blood taking and just go to an immunologist and see what he thinks. Demand it, if they aren't listening because they work for you and that is your child. There is alot of knowledgeable people on this sight, so whatever strikes your interest, write it down and take it to your doctor. What are the doctors saying now? Take care. Sheri IP: Logged |
|
MOMFL Junior Member Posts: 16 |
posted 06-13-2002 03:42 PM
bgrg75 - I agree with Sheri. Denise - I was curious about the family near you, which the child got thier tonsils removed. My daughter doesn't get swollen tonsils every time she gets sick, (Last weekend it just turned into a high fever), do you know if this also happened with that child ? We will return to the immunology specialist in about 3 weeks to see what they have to say, after they review all the test results. Then the following day we will return to the Ear, Nose and Throat specialist, who we saw again approx. 3 weeks ago. That doctor wants to remove my daughter's tonsils now. So, we may have this done in July. But since she doesn't always have swollen tonsils with her fevers, I am leary of doing this. She is now on prophylactic antibiotics for a month to see if that helps, sometimes this is done for 3 months, as an alternative to getting a tonsillectomy. At first I thought it was helping, but now I don't think it is. Last weekend she was very sick again, but the weekend before she had a low grade fever for 4 days that never rose over 100.0 degrees. That is the first time that happened. Then 3 weeks ago she was sick with a high fever with swollen tonsils after the fever went down, and that's when her pediatrician told us to see the ENT again, which he says she has chronic tonsillitis. I have read that if a child has PFAPA, sometimes a tonsillectomy will make it the illnesses stop. IP: Logged |
|
DDekruif Member Posts: 59 |
posted 06-13-2002 04:40 PM
Get the tonsils out. Tonsils can cause lots of problems. Antiobiotics, take these all the time and your kid's system will have problems. The antiobiotics will also kill good bacteria. If my kid had any tonsil problems ,they would have been out in a second. I hope your visit with the immune dr. is good. Good Luck, prayers for us....Denise IP: Logged |
|
Sheryl Lagge Member Posts: 25 |
posted 06-15-2002 09:28 AM
A lady had said on here that if it was her childs heart that they wanted to transplant she would have problems with that but it was only the tonsils so she went a head and removed them. It sounds like there is a 50% chance that the fevers could reaccure and I think it is worth getting the nightmare over. Her childs fevers have stopped completely. Also a lady named Lana on this board found out that her child had an allergy to wheat, you have to read the board it makes scence to me that the reaccurring fevers could also be allergy related. Her board is the catinhat . Very interesting. Let me know what you think. Take care. Sheri IP: Logged |
|
MOMFL Junior Member Posts: 16 |
posted 06-15-2002 11:24 AM
Denise - Actually, my mother-in-law said the same thing regarding the antibiotics. Because she had to be on them for a long time and ended up taking somekind of herb to get her system back in shape. Sheri - I did read the post on the wheat allergy. But, since wheat is in bread, which most people eat often, wouldn't you be sick even more often ? Jeannine IP: Logged |
|
cqmom Junior Member Posts: 11 |
posted 07-09-2002 11:42 PM
hi my 2 year old has to have her blood drawn twice a week for six weeks also. I was told by the Infectious Disease Specialist that this is needed to rule out 'Cyclic Neutropenia' We just went today for the second time. The dr told me that they are almost for sure that what my daughter has is PFAPA, but they cannot make that diagnosis until the 6 weeks is up. It gets so frustrating, because I was told that they would give her that cream to put on to numb her arm, then i was told that all they need to do is the finger prick. My daughter was having her fevers when we went in for the first CBC, they took it out of her finger, and when we went in today, i was told that they need to take it from her arm. I was upset, and asked for the reasoning, and they said because she had her fevers the last time. We have only dealt with this fever thing for seven months, but it is long enough, and i can barely handle anymore blood tests taken out of my daughters arm. I guess what it comes down to, is that they will do a CBC(finger prick) when she is well, but they want a BC when she has fevers, as well as a urine culture. Has anyone else had to deal with this? I am having a hard time understanding why some of this is needed, and reading about cyclic neutropenia, and some of the symptoms,they are not what my daughter has. anyone have any ideas? thankyou paige IP: Logged |
|
MOMFL Junior Member Posts: 16 |
posted 07-11-2002 09:10 AM
We went back to the immunology dept. last week for my daughter's follow up visit. I was mistaken in one of my posts. The reason she got the blood draws was to rule out cyclic neutropenia. All her blood draws were normal. They diagnosed her with PFAPA. They prescribed 5ml of prednisolone for her to take when she gets the fevers. They advised us to try the steriod for a few months and then possibly get her tonsils out. They even told us that tonsils could grow back, which I never heard of. So, the next day we went to the ENT doctor, and he said the only way they would grow back is if they were removed in the 1920's and removed improperly. All Children's Hospital in St. Petersburg is a teaching hospital, and even though they have such a good facility, I wasn't that impressed on our last visit. They did say there's a 50/50 chance the fevers would return. So, my daughter is scheduled to get her tonsils removed in about 1-1/2 weeks. She should be getting sick again this weekend, her birthday, so we will try the steriod when she does get sick. Also, on her last blood draw I had her cholesterol checked since my husband's is genetically high. And suure enough hers was extremely high along with her LDL, a clinical case of hypercholesterolemia. Then I had her rechecked and had her sister's checked and luckily her sister's was normal like me. So, once we get this problem hopefully out of the way, then I need to take her to an endocrinologist, but they probably won't do much since they don't give children medicine until they are 10 and it's different medicine then adults take. She actually eats a lot better than her sister who's a year younger. So, I guess it's one problem after another for us lately. I also asked the immunology specialist if allergies could be causing the periodic fever problem, and he said possibly, then another doctor walked in, and we dropped the subject. So, if she continues with the fevers after her tonsils are removed, I'll request Allergy testing (same dept.), when we return there in 2-1/2 months. Also, I wanted to say, people will say to me I must be used to her getting sick so often by now. Then I reply "NO", because each time she gets sick, it worries me, especially when her fever gets sky high for at least 12 hours when I have to give her both Motrin and Tylenol. Jeannine IP: Logged |
|
DDekruif Member Posts: 59 |
posted 07-11-2002 10:21 AM
You know people are so insensitive! You relive a nightmare. When you are too scared to sleep in case the fever spikes, you and your husband take turns on watch......or will the fever finally get too high and I won't catch it...Will it cause permanent damage..You down deep are ready to run to the hospital...Ya..You get use to this..what a joke!! The one I liked was maybe he won't get the fever this time??? Well he can't be sick he looks so normal??? As he lays on the sofa cause he has no energy left after school... Hang in there..Get second opinions...I'll pray that the tonsils will be the cause... Happy Birthday.. Future ones will get better. Prayers for us...Denise IP: Logged |
|
Beckky Daybell Newbie Posts: 2 |
posted 07-18-2002 10:53 PM
I guess my situation sounds a little different but maybe someone can offer me some help. I noticed my baby's fevers when she was four months old, she always felt warm, now she barely turned 17 months and she still has them on a daily basis. The difference is her fevers are DAILY at 100.0-101.0 Just within the last 2 or 3 weeks I've noticed that when I put her down for long nap, or first thing in the morning when she wakes up her fever is very close to normal 98.6-99.0. But then within hours it jumps easily 2 degrees to 100.6 or so. I can recall several times that we have gone to the doctor with much higher temps (104-105) but no answers (virus ect.) No symptoms though. I've begun wondering if she is having problems with her body regulating its temperature...I know it can be done through breathing, sweating, ect. I feel like I'm really stretching to find some answer, and honestly I try not to think about it but it's on the back of my mind when I pick her up and she always feels uncomfortably warm. One other thing, she has always been given the category "failure to thrive" because she is small. at 10-11 months old she only weighed 12 pounds. however now she weighs almost 19 pounds at 17 months, so she has grown. She eats more than my 5 year old most of the time... She can down 3 hot dogs if I would let her (my babysitter did once). As far as tests we have done SO many. We had blood drawn so often they finally had to start taking it out of the veins in her head because everything else was to worn out. They did the IGg, Iga, and the others, her Igg and Iga were both on the low side so we saw an immunologist and she was tested for TB, arthritis, and many more... At one point her CBC and sedrate came back scary and they thought she had cancer so we saw an Oncolgist, but they improved. We've seen a cardiologist because she has a heart murmur but they say it's innocent. We saw an infectious disease doctor, and they thought she may have Marfan's Syndrome because of her extremely long finger and toes and the heart murmur. But there are not real tests except for ultrasounds of the heart, which we did and everything looks good. I don't know what the test is called but her "liver levels" have come back higher than normal multiple times and her liver has felt larger than normal but last time at the doctors she said it felt normal? Part of me says I should just give up and let time take it's course. We haven't done any tests for at least 4 or 5 months except a CBC which was normal. I think my doctor is frustrated, she wants an answer like me. I'm not pushing the subject I'm sure there are children that you never know what is wrong. But maybe someone will have an idea. Thank you! Becky IP: Logged |
|
nanaretta Newbie Posts: 1 |
posted 04-28-2003 04:06 PM
My 5 year old grandson has been having recurrent high (104-106) fevers over the last 4-5 months. His Pediatrician seem too unconcerned to me. The fevers are of sudden onset with lethargy and sometimes headaches. They usually last 48-72 hours and throat cultures are negative for strep. Any suggestiona on lab work to ask for if and when this occurs again? I am geting worried because he also looks pale and although he hasn't lost any weights he hasn't gained any either over the last 6 months or so and is looking very thin. IP: Logged |
|
dj1993 Newbie Posts: 1 |
posted 07-10-2003 08:55 AM
Hello: I was just reading all of your stories regarding PFAPA. I wanted to share some information about my daughter in hopes that it will help someone. My daughter, between the age of 2 to 3 started with really high fevers, white pockets on her tonsils, pharyngitis, and adenitis and no one knew why. For over a year, she did not gain weight nor did she grow any. She went through series after series of labs, MRIs, Gallium scans, etc., and I took her to every specialist known. A year after all of this began and after cancer was ruled out, she was diagnosed with a disease called PFAPA. The specialist that she saw put her on a medicine called Cimetadine which is generally for reflux disease. This medicine has no side effects and really is for a lot of other different diseases/conditions, and is much much safier than steroids. My daughter is now age 6 and she weighs 52 pounds - she is growing like a weed. She still has her fevers but instead of every two weeks like before, they gradually came down to once a month, then once every three months, and now are once every 6 months. Her physician explained that she should grow out of this when she is 7, that 7-years-old is usually when they grow out of it. I hope this helps as I know that with all we went through it seemed like the nightmare would never end, but it does - it really does. If your child is diagnosed with PFAPA, ask your doctor about Cimetadine. You can also read about it - there are a lot of articles regarding Cimetadine and PFAPA. Hope this helps! IP: Logged |
All times are ET (US) | next newest topic | next oldest topic |
  |
|
|
home |
join free |
boards |
search |
about us | Copyright (c) 1998-2003 HealthBoards.com All rights reserved.
|
contact |
disclaimer |
board guidelines |
privacy |
Ultimate Bulletin Board 5.46