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Old 01-25-2011, 10:23 AM   #31
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Re: Is it PFAPA or another auto inflammatory disease?

Hi! My son has been having these fever episodes for almost a year now. We are seeing a Boston doctor in February and I really want to stress having the tonsils taken out. How has your child done since having the tonsil surgery? Any more episodes? Also, did you try the steroid predisone? I have it but am not sure when to give it to my son and how often. Any advice is much appreciated. Thank you!

 
Old 02-04-2011, 01:02 PM   #32
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Re: my son was diagnosed with PFAPA, or Marshall's Syndrome

Quote:
Originally Posted by beksmith View Post
Hi Jenna, my twin sister in dealing with PFAPA. I totally agree with you.....

Anyway, sorry about the trip down memory lane. We are less than a month away from the anniversary of that horrible day. It has been almost two years since then. Anyway, for my son (like your's) the surgery was medically necessary to avoid any further life threatening situations. It has been such a relief. Thankfully, most kids with PFAPA don't have to endure the seizure aspect of it.
I need to take you to dinner sometime just so we can sit and talk all night!! I think this is healing for us to know someone out there understands us.

We are almost at our one year anniversary of "THAT" horrible day when it all started - February 27, 2010.

He was supposed to be taking a nap in his crib. I heard a little weird noise over the monitor. Thinking "great, he's up early from his nap -ugh!" I decided to go upstairs, pass by his room, and go straight to my bathroom to pee before I got him up. When I walked past his door, I heard what sounded like choking. I rushed into his room and there he was sprawled out in his crib in full body seizure (eyes rolled back, fists locked tight, foaming at mouth). I grabbed him up thinking he was choking, and realized he was ON FIRE as well. I screamed for my husband to call 911 (now realizing he's not choking, but now thinking he must have eaten something poisonous). Instinctively, he ran upstairs to see what was wrong instead of calling for an ambulance. When he saw him, he ran back downstairs to grab the phone. I followed, carrying my jerking, drooling baby with me, crying and begging for him to stay with me. While my husband was trying to call 911, I heard him say our address 3 times, then say "NO! DON'T PUT ME ON HOLD!!!" That's when I told my older son to stay put until grandma comes, and we jumped in the van and drove 1 mile up the street to the local firestation - honking our horn, flashing our lights, and driving on the wrong side of the road to get around everyone. When we pulled up, the last fire truck was exiting the station. My husband used our van as a road block and forced them to stay. I jumped out and ran inside with our son. They put oxygen on him since his lips were blue by this point and waited for a neighbor ambulance to arrive. We were transferred to the ER, where it took a grand total of 4.5 hours and 5 doses of Ativan to stop the seizing. Yes, four and a half hours before he finally completely stopped twitching. That much meds caused him to stop breathing around hour 2, and he had to be intubated. Watching him lay there naked with his cut-up clothes around him, twitching like a fish, and monitors all over him wasn't the worst. The worst was when they pushed us out of the room and closed the curtain while every doctor and nurse in the building was rushing in and out. One nurse came up while I was basically having a complete nervous breakdown - put her hand on my shoulder, and said "are you going to be alright?" If I wasn't so distraught I would have punched her! NO!!! NO, I'm not alright! My baby is dying and they won't even let me hold his tiny little hand while it's happening!! That was the lowest point in my entire life. At that moment I thought for sure this was it. After so long, they finally stabilized him enough to be transported to CHKD children's hospital to PICU where he stayed unconscious for the next day. I never imagined I'd be so happy to see him open his eyes. Then a couple hours later, he lifted his hand. Hours later, he grabbed his bunny! Hours later, he looked at me and cried! Milestones - every one of them! Eventually - about 2 weeks later, he got back to normal. Every seizure since has been SOOOO minor compared to that day (typically 10-15 minutes each and able to be controlled with one dose of Diazepam).

We are planning a surprise for the fire station, ambulance, ER, and CHKD for the end of next month to thank them for saving our son's life. Any suggestions? Everything I think of that we can afford seems so minor compared to what they have given us. They are angels in my eyes

I'm so glad your little one is better and won't remember any of this. Hopefully mine will stop his seizures soon before he gets too old. Ironically, my 3 year old dog started having seizures in August (one month after our baby's surgery). Apparently, she's epileptic, so there's no way it is connected. But my house is rapidly becoming the seizure capital of the world!

Good luck and God bless! Hope to hear from you soon!!

 
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Old 02-04-2011, 01:05 PM   #33
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Re: Is it PFAPA or another auto inflammatory disease?

Quote:
Originally Posted by shyamu79 View Post
Hi svsmith333,
I saw your internet post about trying out Chiropractor for PFAPA. My 2 year old daughter is diagnosed with PFAPA when she was 18 months. She is having the periodic fever for more than a year now. We are giving her Cimetidine daily but this doens't seem to have any affect. We started taking her to Upper Cervical Chiropractor who adjusts her weekly. He has already done 11 adjustments.Can you please provide more details on the Chiropractor practice - method, frequency. Also, did they perform x-ray for your son, if so, how much was it out of alignment? Also, are you trying any other methods to treat PFAPA? Infectious disease specialist told that she is too young for her tonsils to be taken out.Thanks for your information.
You need a different doctor!! Your child is not too young to have their tonsils removed, they just don't understand and aren't educated on PFAPA. A study done on PFAPA showed of 11 that opted for the surgery, 11 never had another episode. 100%!!! To me, the risk of surgery was well worth having the fevers stop. Of course, in my case, the fevers were potentially deadly, but I still would have made the choice. If you have a definite diagnosis of PFAPA, tonsillectomy is the way to go!

 
Old 02-04-2011, 01:10 PM   #34
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jenna*** HB User
Re: Is it PFAPA or another auto inflammatory disease?

Quote:
Originally Posted by KMercer View Post
Hi! My son has been having these fever episodes for almost a year now. We are seeing a Boston doctor in February and I really want to stress having the tonsils taken out. How has your child done since having the tonsil surgery? Any more episodes? Also, did you try the steroid predisone? I have it but am not sure when to give it to my son and how often. Any advice is much appreciated. Thank you!
Boston doctor Licamelli is the expert on the subject. If you are going to him, you'll be fine.

My son has only had fevers when he was sick since the surgery. Not ONE was unexplained and cyclical like before. We tried the prednisone. Although it works to bring the fever down, it has a side effect of bringing the episodes closer together. We got down to 18 days apart before the docs finally agreed to a tonsillectomy. You give it to them as soon as you see a fever. Your prescribing doctor will give you directions on dosage.

I've said it before and I'll say it again. If your child has a definite diagnosis of PFAPA - tonsillectomy is the only way to go. Less than a week down time (popsicles and such) and they will never have an unexplained fever pop again. It's like a miracle!

 
Old 02-04-2011, 01:14 PM   #35
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KMercer HB User
Re: Is it PFAPA or another auto inflammatory disease?

Thank you so much!! We are not seeing the doctor that you mention but another one at MGH in Boston. We have already stressed to him that we want the tonsils out and he said that we would talk about that at next week's visit.

Thank you for the advice. Also, I am glad to hear that the cyclical fevers are gone (forever)!!! There is hope and that is a good thing.

 
Old 06-14-2011, 08:36 AM   #36
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Re: my son was diagnosed with PFAPA, or Marshall's Syndrome

Jenna,

My son Colin suffered/suffers from this. It can get "better". I was informed that he would outgrow it. His cycle was as short as two week intervals at times. He has been recorded at a high temperature of 106.3.

We were very careful about what inoculations we had him get. We spoke with the doctors about which ones to get. Anything that could cause a fever was out. We also found that hot weather was not good for him. We also got very familiar with the signs of when an attack (term we use for this) was coming.

Colin did not get other illnesses. No cases of the flu or the like, although scarlet fever or strep was a possiblity. We also found that when an attack was eminent that he would really succumb when his energy levels dropped; like if he had a fever of say 102 fever and be playing with other children (like nothing was wrong) he would all of a sudden just walk over to my wife or myself and just about collapse.

He is going to be 8 this weekend and is down to 1 or 2 fever episodes a year. He has not had a seizure in some time.
From what I understand there is some belief that when the body – as it will – takes a “holiday” from producing white blood cells that someone suffering from Marshall’s tends to react like they are fighting an invader which causes the fever.

The best course of action is to stay calm, alert and vigilant. If his temp goes up cool him down. Watch so that you come familiar with the signs. We never tried a chiropractor like some of the others here, but don’t rule that or testing for allergies out.

He never had his tonsils out, but a lymph node was removed to check/rule out other illnesses.

Hope this helps.

Last edited by Conquistador; 06-14-2011 at 08:39 AM. Reason: add

 
Old 08-24-2011, 08:33 AM   #37
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Re: my son was diagnosed with PFAPA, or Marshall's Syndrome

Hey Jenna,

I have really enjoyed reading your story. This is why, here is my story.

After having my first child, And after undergoing a c section, and a terrible allergic reaction to a cleaning agent, I spent the fist two weeks of my sweet baby's life in the hospital, being pumped full of antibiotic after antibiotic. Setting up a very bad problem from the get go, We both passed thrush back and forth for the first 4 months of her life. Feeling like I had no where to turn I prayed and told God something was going to have to change, or I could not go on nursing. Soon after I was talking with the lactation nurse,they suggested something that other mothers had done, and it went away after a week. Sheeesh!!!! After this, I noticed my 4 month old was very snotty, I was sucking the snot out ever 30 min with an electric snot sucker. My baby was basically drowning in her own snot. Spiking her first fever I took her to the doctor, and told them my predicament. Right up front they said ''Oh she is just snotty this is normal for them to be snotty, suck it out, and she will get over it, it is just a virus, she was too young for any meds. Going home feeling my time wasted, dealt with it for weeks and weeks. We returned for a check up, and shots, I mentions the continuous snot crap. I was told that that was totally ridiculous babies can not possibly produce that much snot. Being sent home with "THE RIGHT WAY TO SALINE AND SUCTION" I when on my marry little way again, All the while My child continued to get sicker and sicker. Finally they tryied several decongestants that failed miserably. He Finally gave her an antibiotic, and it cleared up for about a week, and back in the pit we flew once again. Pretty much this went on and on. Then the bomb dropped, I looked down at my baby, and there she was none responsive, eyes rolled back in her head, jerking, I found my sweet baby seizing, calling 911 the explained what I was to do until it stopped, and that was the beginning of Hell. Time in which she would foam at the mouth, turn blue, shake violently, some episodes would last 30 to 45 min as we waited for the "ambulance to get to the house. We too were in and out in and out of doctors, and had our far share of ER's, ambulance rides, and overnight observations in the hospital. I remember being told after one episode, and 4 hours waiting in the ER by the doctor "Why r you hear,yes she has fibril seizures, so deal with them, and stay on top of her meds." that is was my fault, I should be trying harder. And times like this, We had taken her to the doctors, waited 3 hours in the waiting room to finally see a doctor for 7 min to get an antibiotic. We left not taking figuring it would take that long (So I left her Motrin at home) we got out ASAP knowing she had to have it, it was 30 min past time, we were racing, a few blocks past the hospital we had just left, and almost at Wal-Greens, I looked back to find starring out the window unresponsive, Istarted to panic, Stating OMG she is doing it again, and I told him to turn around and get to the hospital ASAP. Headed back flashers on driving what seemed like 80 in a 35 up the middle of the turning lain, we got her in to the ER just as she was coming out of it. They took her right back, explaining her problem, and what had happened they insisted on getting her weight. I stop and told them don't you think you need to take her clothes off, and take her temp, she is blistering hot, no we just need to get her weight. After getting back to the room they took her temp 103.6 they where asking all kinds of ???? I told them, ok This is how it is, if you do not give her some Motrin and get her cooled down she is going to seize again. Finally giving in they took her temp again 105.4. Wow the nurse replied that is high, we need to get her some Motrin. Ahhhhh Yahhhhh Duhhhh!!!! I had started to think I had pulled into the hillbilly hotel to ask for a cup of water and some antacids. She reassured me that they would get it, and she would not have another one. She continued to ask all these stupid ???? All the while I was intently looking at my daughter, she start to stair, and a slight twich in her arm, I told the nurse it was to late she was already having another one!!! She looked at her, and said what I don't see anything. I said okaaaa! then why is she doing this???? She then started to shake going in to a really bad one. Standing there watching the nurse suck the foam rolling out of her mouth 5 min went by seizing at full force. I told her ok 5 min's is up, you need to do something, you need to stop this. She said yes and sent for the Valium. A nurse returned with no med's, it had been 10 min now, the nurse was yelling where are the med's, this baby has been down way to long, don't come back with out it!!! Man what a joke i thing it went on for 30 min total. Returning to my doctor they sent me to a pediatric neurologist, they prosribed valuim for the eppisods if they went over 5 min. Sickness after sickness, fever after fever, seizure after seizure, ear infection after ear infection bronchitis after bronchitis, antibiotic after antibiotic, wheezing, and breathing problems where she would stop breathing for 5 sec at a time, all through the night, I was sure she was going to just die one night in her sleep. Topping it all off getting up all hours of the night treating this problem with Motrin every 6 to 8 hours Tylenol every 4 to 6 alternating. I too was checking her temp every 3 hours rectally all throughout the night. Feeding my daughter a steady diet of Motrin, Tylenol antihistamines, decongestants, and antibiotics. I was fed up with a none responsive kind of doctor that made me feel like i was the dumb one, not knowing anything about my child. I fired him, I was done, I would take this into my own hands. A think it was a little before or little after her first birthday, I found her a new doctor, and i had added in chiropractic, and a butt load of D3, garlic,a good probiotic, a malti, Tumes for calcium because milk only made thing worse. Finding her a new doctor I gave him the low down. I had stopped all immunizations at this time, because there was not a time she was not sick and healthy enough to continue getting them, she would always spike a fever. I considered her to be an immune suppressed child. Like a child that had received chemo, she could not have a social life, never taking her to church classes, or parks, because I was afraid of what she might pick up. HE responded "Sound like allergy's and maybe some asthma. Humm after asking her last doctor this, he fed me a crop of bull saying, ''that was crazy, babies do not develop allergies till at least two years of age.'' Finally, this was a I sighed in relief, at least I was getting somewhere. Sending her to a allergist and asthma specialist that did all kinds of test. That was the hardest thing to hold my baby down,as they shoved 36 needles under her skin. Finding out there were some allergies, and obviously lots of breathing problems, he put her on a regiment of a steroid breathing treatments twice a day, and a bronchial dilator 4 to 6 times and if we needed they could be giving every 2 hours when it was really bad I did this every day. She seem to improve greatly. After all she was taking two steroid breathing treatments a day boosting her immune system of course. If I was to skip a treatment or just forget one from lack of sleep or just plain guilt from filling this small child full of steroids. She would yet again get deathly sick. Although somewhat better, I was fighting what seemed like a losing battle. I had reached my breaking point for the 100th time....My daughter was taking so may treatment, her sleep apnea had reached an all time high, labored breathing every night with every breath having the ex hail stop for 20 sec. and then start back up with her gasping for air and sounded like a jet plain, along with this my potty trained child started wetting the bed again. I then told her asthma doctor my concern. He sent me to an P.E.N.T where in she was diagnosed with sleep apnea. He said 20 min's was the top of the line, he suggested we get her Tonsils and adenoids out and ear tube for the ear infections. I jump at the offer, anything to stop this panic that struck me so deep in my soul, that I lived every day like it was her last. Scared half to death we scheduled her surgery, well of course she got sick again right on schedule, calling her doctor to get an antibiotic for her, without having to take her around any other viruses before her surgery, The called one into the pharmacy. I started her on them right away, 4 days till go date, she was still not done with the antibiotic and well enough that they would even consider touch her with a needle, and she could not have had a breathing episode for 48 hours or something like that. Having to inform them that she was still a bit sick they set her app for the day she finished her antibiotic. There we where our 31/2 year old was being takin off by two strangers, having never spent more than two hours away from me, all alone, being put under, getting cut on. Praying fervently, she came through, the doctor call with the results. ''She is ok she came through it great, but it is a good thing we got those suckers out of there they were huge!!!" Taking her home for recovery we had a few more asthma attacks set of from the anesthetic, they stopped after two weeks. She is 41/2 now and has had one sniffle that i think she caught from her baby sister. She did not even run a fever with it and got over it all by herself within 3 days. I am proud to say she does not take any more breathing treatment, she is medicine free and symptom free. I take her to the chiropractor if I suspect a sniffle, and that is all it takes. She was never diagnosed with this syndrome.
It wasn't until a friend of mine was having some of the same things happening to her son, sick all the time with high fever. I told her it sounded kinda like what my daughter had been through. Out of a month she would be well for 1 week and that was because of an antibiotic. She told me how that was not his problem, the doctor had never told her his tonsils were infected. I explained to her no one had ever told me that either. Months past and she still was frustrated, going to her explaining, "you just need to ask you doctor if he would do this for your son, I know it sound extreme, and you see few connections besides the fever and the conic illness, but this worked, and couldn't not hurt him to try. Today yesterday I saw a FB post that that said she was leaving to see a specialist for her son, I called her and asked her what was up. She explained how she switched his doctor. The new doctor said that he thought her son has Marshall's syndrome,She said that it sounded just like what my daughter had as well. I told her I could believe it, and then proceeded to ask her how they were going to treat this. Suspecting what she was going to say, she said it, tonsils and adenoid removal. I sighed..... YES!!!! I am so excited for you. I told her congratulations and let her go. Now curious about what exactingly Marshall's syndrome was, I soaked it all in, then finding this site, I was blown away by your story, it was like you were telling my story. Even though my daughter is healed, you can still imagine how relieved I am to know there was a reason, behind all the madness, I had just been through, instead of a bunch of none connected diagnosis. This gave me the last piece to my puzzle, thank you!!! There is no doubt in my mind about this, this is what my daughter was suffering with. It is just by the grace of God that she was able to have the sugary with a hassle and without her true diagnosis. Had to be a God thing!!!!
Sorry for rambling, I am just so excited to share my story and hear that i was not the only one out here with this crazy problem that was "NOT A SO CALLED PROBLEM"!!!! Thank you, thank you again, for posting your story. I hope mine will further the awareness as well!!!!
I am so glad that you went forward with the sugary, it was truly life changing for us as well!!!! My little girl is normal, I too remember hiding the fact that she was going on a month symptom free, my husband and i would go through this whole conversation. Can you believe ****** she has been you know........ afraid to jinks our self we would not say the words. My sister would call " ****** can you believe how long it has been". I would say '' I know!!!"She would you know how many months it has been?" "I would say don't say it!!!" We did this fro months and months. I think I still find my self waiting for the next thing or sitting things out when i hear there may be a sick kid around. or after coming home from the park and her not getting sick the next day. Let me tell you I use a lot less Germ X. This whole experiences has changed my life in more than one way. We eat organic, use safe natural cleaners, and treat with homeopathic meds if we need to. We feel so free from all the antibiotics and drugs we once depended on. Praise God!!!!! What an awesome God we serve.
Raising awareness for our little one's, and fellow parents who have no voice!!!!

 
Old 08-24-2011, 08:47 AM   #38
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Re: my son was diagnosed with PFAPA, or Marshall's Syndrome

We had to finally declared bankruptcy, the medical debt has swallowed use up completely, we had never missed a payment a day in or life and having top notch credit. Face the dreaded day that was coming too fast upon use, we called our creditors, and bank to see if they would help maybe consolidate. Very quickly receiving a sharp no from all side, my husband had switched to a new job when in the insurance did was not cover for a certain amount of time, we payed 3 months out of pocket. That did us in, we had no where to turn but down. That too has taught us a lot we should rely on God for everything, and he will provide. We are credit card free and med's free. What a relief!!!

 
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