I'm a new member, so bare with me as I learn this site. I see most of these postings on periodic fever syndrome are older.
My son is 12 years old. Has been diagnosed with Periodic Fever Syndrome. It started when he was 7 years old. First three years was every 21 days precisely. Fever, headache, sometimes upset stomach, slight sore throat. To the most part, fever and headache. Fevers used to be as high as 105.0. By the 4th year, there is more time spand in between and fevers not as high. Some episodes at 104. By the 5th year, the time spand seems to be 4 to 6 weeks. Fevers usually 102.0. Still headaches and fevers. First three years he had no appetite either. Now he does during episodes. First 4 years they lasted exactly 3 days, the past 3 episodes have lasted almost a week. He's been tested for everything under the son, everything in his body comes up 100% normal. It was 5 years in Aug., 2008. Now its January, 2009. Do these symptoms sound like its coming to an end??? Please help!! He's been to MANY doctors, not many no of this thing called Periodic Fever Syndrome. Has anyone had luck with removing perfectly healthy tonsils to rid the fevers?? PLEASE help!
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The following user gives a hug of support to Marley01: karlsberg (08-24-2011)
Can anyone help?? My son is 12 years old. Has been diagnosed with periodic fever syndrome. Before age of 7, can't even count on one hand how many times he even had a cold. Then in August of 2003 he started getting fevers, which they'd call "fever virus". It would always last 3 days. I started calculating for repetition, and sure enough it was every 21 days. This lasted for 3 years. Every 21 days he'd get a fever, headache, loss of appetite, sometimes slight stomach upset, and sometimes slight sore throat. By the 4th year, longer duration in between and not as severe of fever, maybe 103. to 104.0. Got his appetite back during episodes. By the 5th year, still longer duration in between episodes, maybe he gets fevers every 4 to 6 weeks. Usually fevers are no higher than 101.5 to 103.0. Always starts with a headache, he's extremely tired. Has his appetite back during episodes. But the last 3 episodes have been like this: very low grade fever, headache, tired for first 3 days. You feel like "wow, this wasn't a bad one!!" Then WHAM.... he gets the headache, fever (102.0) for about 4 days. So last 3 episodes have lasted a week! In the last 5 years, he has had no other ordeals other than this - no colds, no flues, maybe 1 or 2 typical childhood illnesses, but to the most part, just this fever and headache. Has been tested for about everything you can imagine, his body ALWAYS comes up 100% normal. Has anyone ever heard about removing tonsils? Has it worked for you?? His tonsils are 100% healthy, so I hate to do that. Saving it for a last resort, which are about getting to!!! Please help!! Was also told that this will probably last 3 to 5 years and then fade away without us ever knowing why he had this in the first place. Anyone else hear that?? Plus, it is January, 2009; ~ August of 2008 was the 5 year mark. I'm worried.
My son has had fevers and headaches for the past 5 years; has anyone else endured this problem?? Does it go away? It started at the age of 7, was every 21 days for the first 3 years with headache, high (105.0) fevers, loss of appetitie, slight stomach upset, slight sore throat sometimes. By year 4, longer duration in between fever onsets, got his appetite back during episodes, but still suffers fevers (103.) and headaches. By year 5, longer duration in between fever onsets, more like every 4 to 6 weeks. Has an appetite. Fevers go to 102. Past 3 episodes lasted 1 week, instead of 3 days. Was told he would have this 3 to 5 years, it would eventually fade away without us ever knowing why he got it in the first place. Not contagious. Never gets colds or anything else. All the tests done say his body is 100% healthy. He's been seen by Childrens Memorial Pediatric Specialists, Pediatricians, Internal Disease Specialists, Opthomologists who took MRI to see between the back of his eye to his brain, had MRI scan done on his brain to check for brain cancer (negative), has been checked for rheumatoid arthritis, lymes disease, you name it. Everything comes up 100% normal, but still, he gets sick. Does it really go away? Has anyone ever heard of this or heard that if you remove the tonsils, it may go away? His tonsils are 100% fine, I hate to take them out on a gamble, but yet I do want these fevers to stop!! Please help. They ruled out "phapa" with him, because he didn't start getting the fevers until the age of 7 (was told phapa patients usually run between ages of 2 and 7) and also his body reacts to tylenol, advil and motrin, whereas phapa patients do not and they have to go on steroids. Any help would be greatly appreciated, we are desperate!!
I see from your other posts that you are already familiar with FMF and TRAPS, has your son been tested to rule these out? FMF is more common in people from the Mediterranean basin (which is how it got its name).
No, he hasn't been tested for FMF or TRAPS. We are definitely considering it. We were under the impression it costs between $1000 and $2000 for the test, takes 4 months to get results, and our insurance said they won't guarantee coverage until AFTER we get it done. We would spend the money in a heart beat if we felt he really fit the category, but I'm not so sure he fits the category. My son is swedish-norwegian (from me), and italian-polish (from my husband). I am in the process of gathering all of his info (I've kept LOTS of records) and think I'm going to send them off to several organizations, hoping SOMEONE will take the time to review. I thought I'd try Mayo Clinic, Institute of Infectious Diseases, University of Chicago, whatever I can think of. It certainly can't hurt.
I also just sent out an email covering my parent's side and my husband's parent's side. Asking them to forward to any blood relatives they can think of to see if ANYONE has had this in their family where we could relate it to genetics. Again, I figured it can't hurt.
I'm also under the understanding that with FMF there are only 200 cases known worldwide. Out of that 200 a rare percentage came from Italy. So I'm focusing more on my husband's italian side.
Is there a cure for FMF?? or TRAPS??
I'm trying to stay positive, thinking since the duration in between episodes is longer now, 6 weeks rather than 21 days ~ and because the fevers are now 101.5 instead of 105.0; we have to be coming to an end soon. Its been over 5 years. The weird thing is they ALWAYS lasted 3 days for the past five years, but the last three episodes lasted a week. Ugh!! Mild though. Mostly headache, slight fever and tired.
He had mono at 6 1/2 years old. Does that linger and come back? Probably not repeated like this though.
I believe that Anakinra is being used to successfully treat FMF, TRAPS, and other conditions related to periodic fever. There has been a lot of work done in the last 5-10 years in this area, so getting someone from Mayo or U. Chicago should be really helpful. FMF, TRAPS and the periodic fevers are not infectious in origin, the are considered autoinflammatory diseases where normal control of inflammation is not properly controlled resulting in fever and a variety of other inflammation related symptoms. These symptoms vary, a rheumatologist familiar with these may be able to exclude or include some of the syndromes based on the symptoms your son has
I actually found a medical article in the Journal of Pediatrics by SS Long that mentioned some cases of infectious origins contributing to recurrent fevers and included in that was CMV and Epstein Barr ("mono"); I don't have the article in front of me so I can't tell you exactly what it said but it seems possible as he experienced mono before experiencing these fevers. The other thing I'm curious about is whether he attended preschool or daycare before the age of 5 or if he has other siblings at home. I wonder because I found another article mentioning the possibility that PFAPA isn't an autoimmune disease but instead one of an infectious origin. Again, look back at what his symptoms were in the beginning and what type of diagnosis he had when this first began. Also, how is he during the fevers? My child alot of times will have episodes where she is playful despite a temp of 104.5.
When I gather more info I'll let you know.
Thank you kr walters and jhasturs ~ both of you were a BIG help and definitely gave me new avenues to explore!!! I have three children (12) - (14) and (16). I was always a stay at home mom until these past two years when his fevers weren't so close together. I thought his fevers were going away and it was safe to return to work. My Dad saves me and stays with him when he has his episodes or I take a sick day off of work, depending on the severity. No day care. But all three of my kids did do preschool, starting at age 3 - going for 2 days a week (2 1/2 hours each time). Then at age 4 went for 3 days a week (2 1/2 hours each time). Then at age 5 - half days of kindergarten, and then on to grade 1.
My 12 year old son (who started getting sick at age 7) was never really sick with colds or anything prior to this. He was diagnosed with strep, treated with antiobiotic, it didn't go away. I brought him back to doctor, they said maybe he has mono. Tested him, said his spleen felt enlarged - no activity. Blood tests came back positive for mono. When he was diagnosed with mono, they said "no activity whatsoever because his spleen could burst". My son is extremely actice. Definitely NOT a coach potatoe. It was the Friday before July 4th and we were going on a weekend family vacation to Michigan. Over the weekend, I mentioned to my husband "he certainly does not look like a kid with mono - he's not even tired, I had to force him to get to bed. On the Monday after I asked the doctor to see him again, check his spleen - I think its the end of the mono, not the beginning. They finally agreed. I needed to know because my son is also VERY active with his baseball, and he had a game coming up that was very important to him. They agreed to see him and said I was right, it was the end of the mono, not the beginning. We all agreed with just how active he is, it was a complete miracle he did not burst his spleen while being diagnosed with strep. (He was swimming, falling off bikes, diving for balls during baseball, running, playing football, you name it!!) They concluded he was fine and ok to pursue his sports. So our dose of mono really was 2 days!! I thought that was very strange. It was after that when these fevers started occurring. First it was every 4 to 6 weeks. Then every 4 weeks, then every 21 days precisely for about 3 years. Very high fevers always lasting 3 days. Now we are down to the fever episodes occuring every 52 days or 6 weeks, not as high anymore, and the last three episodes lasted a week instead of 3 days!! In the first three years, fevers were accompanies with slight sore throat (hurt when he swallowed) and headaches. Sometimes slight stomach upsets. On just a few occassions, vomitting too. The first three years, no appetite, basicallly slept the whole 3 days. Always drank plenty of fluids though, that was never a problem. By year 4 and year 5 of this, his appetite is back during episodes. He's not running around playing baseball during episodes, but he is up playing xbox or playstation. You can always tell when the medicine is about to wear off by the look of him, sure enough, when the we check the clock, his medicine is about to wear off. He has his medicine, and about an hour later he's sitting up again playing his games. (not running around, but not out like a light either).
I really appreciate you two responding!! Cannot express it enough!! Thank you!!
My daughter started her fevers at around 10 months old. She was diagnoised in June of 2008 with PFAPA after alot of searching and doctors she will be 9 tomorrow in the past three months she has not had a fever finally. She still gets alot of headaches. She has never stepped inside a school she is home schooled.
My son was diagnosed with PFAPA last Jan (2008) after two years of being very sick with high fevers, stomach flare ups, appetite loss, lymph nodes swollen etc. every 5 weeks. He started getting these symptoms at 7 months and they never ended until he was properly diagnosed at the age of 2 last Jan. and then after he had some lymph nodes removed to be tested, his infectious disease Dr. recom. to get the tonsils and adenoids (sorry spelling) out. He had that done in April of 2008 and he has been fever free and healthy ever since. It was hell on earth having him go through everything, but his infectious disease Dr saved all our lives. Good Luck there is a light at the end of the tunnel.
That's interesting that Francis's child has been home-schooled and contacts I assume are minimal. The problem I have with the diagnosis of PFAPA is that it has no defined etiology and no confirmatory lab tests. I also find differences in the criteria for PFAPA. In Marley's case, your son was 7 when he started. It fits a recurrent fever pattern but in one article it states PFAPA should not be the working diagnosis if age of onset is older than 5 years (Sarah Long, MD). I wonder if its possible that he might have a recurrent Epstein-Barr virus.
In my research, I found numerous articles by Sarah S. Long, MD. She is a pediatric infectious diseases physician and is associated with St Cristopher's Hospital for Children and Drexel University College of Medicine in Philadelphia, PA.
I do not know anything about her other than from reading her medical articles, she appears to be very knowledgeable about recurrent and periodic fever syndromes. Perhaps, Marley, you could try contacting her or sending her your son's medical records for review. Also, Alexander Lawton, MD has done alot of research. I'm not sure with which hospital he is affiliated. I know Marley your son has seen an Infectious Disease doctor who states he sees 15 to 20 cases a year but is that one of his interests? My daughter saw a pediatric infectious disease doctor as well who states he sees this alot but I still am not sure if she fits the criteria. She has had 2 febrile UTIs, one during the past 6 months, which seems to confuse the issue but despite being on an antibiotic regimen at night she has continued with monthly fevers. She is going again to an ENT physician next week and I am strongly considering a tonsillectomya and adenoidectomy and to be honest I think it is more for my benefit than hers although the pediatrician thought that she is a strong candidate moreso for tonsillitis than PFAPA.
I read some information written by a pediatric surgeon about the tonsils and adenoids become "dysfunctional" in some children and not designed to handle the multitude of viral infections that occur in children in an urban population. Perhaps this is why in some cases of PFAPA a tonsillectomy seems to "cure" them. This diagnosis came about in 1989 I believe but I'm sure children have had these symptoms in the past.
I am interested of the role of the tonsils in PFAPA. In the 1970s, tonsillectomies were still the 3rd most common surgery performed. In 1978, NIH recommended further scientific research to justify a tonsillectomy and guideline in 2000 were published listing the indications for a tonsillectomy. It used to be that recurrent pharyngitis was one of the primary reasons for tonsillectomes but not now. Could this be why there are more reported PFAPA cases?
I am definitely not pro elective surgery, and in fact when I took my daughter to see the ENT in September, I was not in favor of it. However, I also hate to see her sick every month and after finding out she had a UTI in October, I am even more concerned. I had checked her urine one month ago with her last fever and it was fine. Her last episode this month her urine was fine but her labs where more consistent with a bacterial infection although she never has tested positive for strep but her tonsils were moderately enlarged. So, I have to wonder, is it better for her to have a tonsillectomy or to have to force her to have labs done every time she has a fever? We will see the ENT next Friday so for now I have to try to determine how to proceed.
I will keep you posted
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kmob-why did your infectious disease Dr want to test nodes-did this make his decision regarding tonsillectomy or was it to rule out another illness? My 2 1/2 year old has been diagnosed with pfapa, we saw the ENT today and he suggests tonsillectomy, but is leaving the decision up to us--we are struggling with the decision-we are not wild about sending him into surgery, but the last year and a half have been torture for him and us and I can't imagine dealing with this for 5 or 6 more years! How did you decide to have the tonsillectomy? How old was your child when it was done? Did you have any complications? I wish that the ENT would have given us more of an opinion than he did, he basically just said, yes, he is a candidate for the surgery, let me know what you decide!
KrWalters, thank you very much! You definetly gave me lots of alternatives to check in to. I really appreciate it! I didn't know there was such a thing as recurrent Epstein Bar virus. I wonder if I should have his spleen checked during next fever episode? My sister in law recently mentioned that. But I always thought that mono was contagious and no one else in the family, or his friends, ever get sick from him.
The two ENTs he saw both thought his tonsils looked fine and suggested we wait. The 2nd one said there is very little tissue on his tonsils, which he said was a good thing, and honestly didn't know what they would remove. Although, both admitted they were not familiar with his condition at all. (recurrent fevers or periodic fever syndrome).
I think I will try to send his medical file to the places you mentioned, it certainly cannot hurt. It was interesting what you found out about the tonsils too though.
Coopsmom - Just because we were told to wait on our son's tonsils, don't let that scare you. From reading these posts, I see many others have had their child's tonsils removed. I would definitely have 2 or 3 doctors check before I removed my childs tonsils, but this is a tough one. I look at it as a gamble, it may work, it may not. But like you said, you don't want to be in our situation 5 - 6 years into it. My other two have been sick with the stomach flu so I've had my hands full and hadn't had a chance to get on the computer.
Thanks to you both for replying!! We are so open to suggestions or love hearing from other parents who are dealing with the same thing!! It really does help!!
My 10 year old daughter was just diagnosed with Periodic Fever Syndrome a few months ago. She was always what we called a "fevery" kid. She was even born with a fever and was in the ICU. Her fevers have gotton as high as 104. We just figured that was the way her body handled viruses. It wasn't until about a year ago that we noticed her fevers came every 3-4 weeks like clockwork and she didn't have any other symptoms, other than a swollen gland in her neck. Time and time again, we were told by doctors that it was "just a virus." I started keeping a log. Every 3-4 weeks on the head she got a fever that lasted 2-4 days. The were high too - like I said 103, 104. This past summer she had an appendectomy. 3 weeks after surgery the fever returned. So then they took her tonsils out. Doctors said that they were enlarged and cryptic, so that was what was probably causing the fevers. 3 weeks after that surgery the dreaded fever returned again. The doctors tried their best, but I wasn't about to continue removing all her organs to see which one would make the fevers stop. We went to Children's Memorial Hospital. She has endured (my poor, sweet baby) countless bloodtests. It was determined it was Periodic Fever Syndrome. They did test her for Familial Mediterean Fever (a very rare genetic disease) only because she is 75% Italian. She does not have this. But she is taking now .06 mg of a drug called Colchicine twice a day. It's been the miracle we were praying for. She has not had a fever in 2 months now. They just stopped. Our follow up visit at Children's is in March. They need to check her liver function 3 times per year to see if the medicine is affecting it. I pray it isn't because it is working. We were told that since she doesn't have the Mediteranean one, that she should outgrow this and improve with age. Hope this info. helps. I feel so deeply for you and understand what you're going through. I do know what PFS is - the good doctors explained it in a way that really helped me. Let me know if you want the info. I received. Don't want to take up this whole website. Hope to hear from you.
Thought I would just add more of what I know, after reading through eveyone's posts. Periodic Fever Syndrome is an auto-inflammatory disease. The way the doctor's at Children's explained it is that we all (everyone) have molecules that release chemicals all the time. Someone with this disease do not release the chemicals from the molecules at the right time. They build and build and then after a few weeks (my daughter's were every 3-4) the chemicals release and because they are released so suddenly and off schedule, her white blood cells think something is wrong. The white blood cells are what protect our body from infection. So they create a fever in response to the off-schedule, sudden release of chemicals. Colchicine (her medication) will not stop the molecule chemicals from continuing to build up, but it does in fact "tell" her white blood cells to calm down and not create a fever in response. She may never be cured of this, but it is managable with medication. It is important to get the fevers under control. They were seriously affecting her quality of life. She's missed 14 days of school already this year and was depressed from all the tests and doctors and just the missing out on so much. But thanks to the medicine she is happy again, doing great and can just concentrate once again on being a kid - no worries. I'm still worried, but I can't let her know that. Go to Children's Memorial Hospital's Rheumotogy department (Dr. Miller). Have them check your son's "Sed rate" - while he is fever free and then again during the highest point of his fever. This was a task for us - we had to rush her down to Convenient Care during her fever. Once any doctor office knows you're working with Children's, they'll be very willing to help. They're the best!
The following user gives a hug of support to ltp: tmbbay (05-18-2011)
Itp - Is this complete coincidence or are you related to Linda?? I was just speaking to a girl at work regarding her neice, I gave her this website to give to the mom (sister/sister-in-law). I am sooooo THRILLED you wrote!! I am definitely going to follow up on this!!! We've been to Childrens Memorial, but we saw a pediatric specialist that deals in difficult cases, his name is Dr. Listernick. I am definitely going to check out this other department. Actually, I know what your talking about - about the million of tests!!! The pokes!! The probes!!! (our poor babies!!!) We have had LOTS of complete blood workups done and I have copy of all the reports. We have done blood workups every other day, for one week prior, one week during, and one week after! Now, I want to go check the sediment you were talking about!! I do know his white blood cell count was ok. But this has been going on for over 5 years and I do have lots of tests they could look through to compare. Its been two years since we've been to Childrens Memorial, but I think definitely time to go back. You are the second person to recommend that department as well!!
I'll keep you posted. Please let me know how your follow up visit goes!! You may have just helped lots of people by your message to me!! I told my husband to remind me - I want to come back on this site and let everyone know what worked, once we find something. So we can help others going thru this horrible thing as well!
Also, for anyone reading the previous messages on this.... my son just got over another fever episode. It again lasted a week. The last 4 episodes have lasted a week, instead of 3 days. The 3 episodes prior to this - his fevers were mild, but very bad headaches. This time, the headache was bad as well as the fevers. They were high again. Close to 104. But I took him to the doctor during the fever episodes to check his spleen and to double check on recurrent Epstein Bar - that was a negative. His spleen was fine, and the doctor didn't feel he fit the category. It was worth going though, one more thing I can cross off my list. He did test negative for strep, but had a sore throat. Turns out he had a few ulcers on his throat which is common in periodic fever syndrome, I guess they heal on their own. But he said that is what caused his throat to be somewhat sore when he swallowed.
Itp - I'll say a prayer for your daughter that the medicine is working for her!! Thanks for how well you explained everything as well. Let me know too if you are related to Linda, or that is just plain freaky the coincidence to a recent conversation I had last week.
Thank you ~ I'll keep you posted - I'm definitely going to call that doctor!!
One more question......... that medicine your daughter is currently taking, thats not a steroid is it?? I have heard that some children have to go on steroids because their bodies do not handle the tylenol or motrin. In other words, their bodies show no reaction to the tyenol or motrin, they do not help their fevers at all, so therefore, they have to go on steroids to control the fevers. Just curious. I'm going to research the med right now. I know I should be going to bed, but you have actually given me some new hope!! Thank you again!!!
Interesting............ when looking up info on the medicine.... colchicine..... I saw one article that said neutrophils are white blood cells. My general pediatrician always told me that my son's white blood cell count was fine. But I noticed when reviewing his file that his neutrophils were slightly elevated during a fever. That sounds like what you were talking about!!! Hmmm..... (Sorry, guess I'm thinking out loud here!!)
Hi! I just wrote you a long note and I don't think it posted. Ugh. I'm brand new to this site, so forgive me. If it does post later, sorry. Yes, I am Linda's sister-in-law! In a nutshell, to answer your question - no, Colchicine is not a steroid. My daughter is doing well on it (knock on wood) and it has very few side effects, none of which we have seen. I should have mentioned this earlier though - the doctors asked us if our son has any of her symptoms and we said no, thankfully. They reason they asked is because they did say that boys do not respond to Colchicine the same way as girls. It can affect the liver and kidneys, but we didn't get that much into it because we were dealing with a girl. So please just keep that in mind as a question to ask when talking to doctors about Colchicine. One of the main reasons they put my daughter on Colchicine is also because she was no longer responding to Tylenol or Motrin. The best advice I can give you is to keep a log of his fevers. Track everything. Write down the date it starts - to the day it ends. Write down his temperature readings and what you gave him and at what time. Figure out exactly how many weeks are in between the fevers. It's exhausting, but so is caring for a chronically sick child. The logs will help immensely! Have them check his "Sed" rate. At first this number was insignificant but as we drew closer to figuring out the cause that "Sed" number was the qlincher. Her white blood cells were always normal too, like your son's. But once the doctors got wise to the not responding to Motrin and the "Sed" going up and sometimes even down during the fever, they figured it out. Unfortunately all the blood tests are really expensive and heart wrenching to witness. But we pulled through it (wasn't easy). Our journey is far from over, but now more than ever, I know she is in the right hands. We are lucky that we have good insurance. Here is who I'd recommend you call - Dr. Maria Ibarra and Dr. Miller (don't have his first name in my papers here, sorry) at 773-880-4000. They are Rheumatologists. I also have the number of a great Immunologist if you need it. Keep in mind that one's "immune" system is different than the "auto-immune" system. What my daughter has (and quite possibly your son) is actually a "hyper" immune system. Her immune system works just fine, in fact too well. She's creating fevers due to something going on internally, not externally. Does that make sense? Let me know...Thanks!!
It's me again. Not to play doctor or anything, I just have some questions for you that may help you. I know I would have loved to have had someone to talk to about all this medical stuff a few months ago. I felt very scared and stressed and I feel for you deeply. If you don't mind my asking: Do you know of anyone in your family with an auto immune disease/disorder/even allergies? PFS is genetic (I have Raynaud's, which is auto-immune). What is your nationality? Does your son become very emotional right before a fever bought? Like the day/night before he gets the fever? Does he still have his Appendix and Tonsils? Does he has swollen glands in his neck? There are reasons for all my questions and I'll answer them later if you want.
About the white blood cells - Hers were normal and even the Sed rate came back normal at times. It wasn't until the Children's doctors broke down those baselines and examined the blood on a molecular level, did different results come up. You are so right in trying to break down those blood tests yourself, but you can't do it alone cuz you're not a doc. I tried and tried to figure it out myself too, but you need the experts. I'm just telling you this because I'd like to save you from numerous, unnessary blood tests at the Pediatricians office. I told my Pediatrician I suspected an auto-immune or auto-inflammatory illness and she said it was unprobable and to wait and take the tonsils out. She was going off of many, many blood tests (testing for Thyroid, TB, West Nile, Lukemia, also they checked reg. CBC's, Red cell counts, strep, Sed, auto-immune) but they were all baselines and appeared completely normal. Periodic Fever Syndrome is rare, so it's somewhat understandable that it took a couple trips downtown to get it diagnosed properly. Hope some of this helps you. Let me know! God bless.