Sunday, September 7, 2014

Kicking PFAPA's rear!

I'm so excited to announce that in the past nine months, Abbie has only had two fever episodes.
She had one last three days in February and one in July lasting less than 24 hours! During both of those times she had missed her tart cherry for at least three days prior. She takes several supplements every night. But I fully give the Tart Cherry credit for the reduction in fever episodes. Enzymatic Chewable Tart Cherry Ultra ........................0.4g Tart Cherry Skin Concentrate (bottle has serving size set at 3 tablets and 1.2g, but I only give her one).  These taste wonderful and have additional benefits.  Not only does it block the enzyme that causes inflammation that results in her fevers, but it promotes the body to produce melatonin which helps her sleep better.  One of the side effects of PFAPA is weird sleep patterns.  If she takes this just after dinner she goes to sleep quickly at bed time and stays asleep, but if I give it to her just before bed she may still wake up in the middle of the night, so timing is everything.  Tart cherry is also wonderful for gout which my husband has in his big toe.


Vitafusion Vitamin D ..................................1000 IU gummies (bottle has serving size at 2 gummies and 2000IU, but I only give her one).  Studies have shown that children with PFAPA tend to be deficient in vitamin D.  Abbie spends a good deal of time outside, either in the pool or on the trampoline during the summer.  This is not necessarily true during the winter so as a precaution I have begun to give her one of the vitamin D chewables.  You need to be careful because vitamin D is one of the vitamins that you can overdose on.  She loves the way these taste and is eager to get these each afternoon.


Schiff Digestive Advantage Probiotic Gummies ...............1 chewable
One of the frequent complaints of children with PFAPA is that their bellies hurt.  I've started giving her these in the hopes of helping with her belly complaints.  I can't tell you for sure that  it is helping with the pain because she has only had two episodes this entire year, but taking probiotics has lots of other benefits such as helping you to stay healthy and not catch any of those nasty bugs that float around during the school year.These boast that they have a 10x better survivability than yogurt and they taste wonderful.  It recommends one piece for children 3 and under and two for anyone over the age of four.  I may up her dosage to 2 within the next few months.


Green Pasture Blue Ice Royal Butter Oil/ Fermented Cod Liver Oil Blend Gel in Chocolate Cream .........................................1/2 teaspoon (Abbie takes this for her bad teeth...right now she has an abscess and I am hoping to heal it naturally)  I thought Chocolate Cream would be a winner, but it tastes really bad and requires a chaser immediately after.  Abbie is doing wonderful taking it and doesn't complain, she just makes sure there is a drink waiting before she will take it.  I've tried it and agree that it tastes horrible.  I had already ordered these before reading reviews.  Next time I plan to order the Cinnamon Tingle.  Unfortunately it will probably be a while as I ordered two of these.  My son is also taking this every night because he has a small cavity on one of his permanent molars.  I will let you know after his appointment to get it fixed if this has had any effect on that cavity.

These are the supplements she takes.  We have not had to take one single prescription or have an operation and I am very pleased with how she is doing.
She has her next appointment with her infectious disease doctor in October and I can't wait to tell him our results!
If you have any questions or results from using any of these products, feel free to leave a comment.  Also feel free to share our story with any of your friends who may have children suffering from PFAPA!

17 comments:

  1. Hi! How much cost tart cherry supplement? I am from Serbia and can't find that here. Is there any chance to send me 2 bottles? I would gave u money somehow? Sorry , I am really desperate:(

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    1. I got these from drugstore.com. They do ship internationally but some things are restricted. I was trying to look and see if it would be restricted. Drug that are non-perscription are restricted, but I think this would fall under supplements. The US price is $15.99. I'm not sure how that would translate for you. Please check it out! Amazon.com has it for $13.67. I'm not sure on their shipping availability for overseas.

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  2. Thank you for posting!! My 3yr old was just diagnosed. She won't drink the juice so we will try the chewables! Have you changed her diet at all? I've read that going on a gluten and dairy free diet could possibly stop the fevers.

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    1. We did not try changing her diet....mostly because that would be just too difficult to do. I have certain items I buy every two weeks in bulk to save money and after teaching all day I am exhausted. I come home and fix whatever is easiest and fastest and then crash....I'm too tired to try and figure out a special diet. If someone could create a little kit with what she needs and sell it in grocery stores and I could just pick it up and *bam* it's done, then I would consider doing it. Just adding these supplements is the only change I have made and I think the results are absolutely amazing. I think another reason I haven't changed her diet is that I don't want to allow PFAPA to control our lives or change it. Yes, it is frustrating, but it WILL not be allowed to control our family. When I searched for an answer it had to be something that allowed me to control the PFAPA without surgery and without perscription drugs.

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  3. That's good to hear, a complete diet change seems very overwhelming. Did you also notice a change in her behavior once you started the supplements? My daughter as really been acting up a lot, but she's 3 and she currently gets fevers every other weekend. I'm so glad I found your blog, I've just read through some of your older posts. I have cried so many times during the night in her room feeling completely helpless. I'm really hoping the tart cherry works as I'm not interested in steroids or surgery. I feel like I have a million questions since we just got diagnosed, I'll check out the resources you posted early. Thank you so much!!!

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  4. Thank you so much for sharing this information with us. I feel like I'm completely lost. It's so hard to see your little ones so sick monthly. We are not interested in having surgery or putting her on prescription drugs either. The information that you have provided gives me hope, and stopped the tears from flowing down my face. Thank you so, so much!!!

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  5. Did you mean you give your daughter the chewable tart cherry and another cherry concentrate? I'm not sure I read that right. I am looking for options for my sons fevers.

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    1. I started out giving her the liquid, but it was too tart so I switched to these chewables. At the moment the tart chewables are the only thing she is taking. She had been fever free since August. She fell on a treadmill two days ago and hit her face causing a friction burn. This upset her so that it started a flare. We are on day two of a fever episode thanks to that event. And wouldn't you know it, just in time for Christmas.

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    2. I started out giving her the liquid, but it was too tart so I switched to these chewables. At the moment the tart chewables are the only thing she is taking. She had been fever free since August. She fell on a treadmill two days ago and hit her face causing a friction burn. This upset her so that it started a flare. We are on day two of a fever episode thanks to that event. And wouldn't you know it, just in time for Christmas.

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  6. Ok thanks. I am desperate for something to help my son. He has possible pfapa. Hasn't had genetic testing done. He's on day 6 of fever and symptoms!

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  7. How old is your daughter now? My son was diagnosed with an early onset of PFAPA at the age of one. He is now 3. Can I give him the dose you recommended for your daughter? And how does her mood or upset (as you mentioned when she hurt her face) affect the onset of a flair? I'm curious, as no one has ever explained that his mood or injuries could cause an episode and he is a quite moody child. Any additional insight you could offer would be greatly appreciated!

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    1. Hi,
      My son has had these fevers since he was 8 months old. He is now 3 and half, and I started giving him tart cherry juice concentrate daily back in January. His fevers have become less frequent (2 or 3 since January as opposed to one every 3 or 4 weeks) and they don't last as long. His last fever was 24 hours and did not get over 102. I give him one tablespoon in the evenings with his dinner. He actually requests his tart cherry. I never noticed a change in mood with my son from taking the tart cherry. I give him the organic Solaray tart cherry concentrate. You can order it from Amazon.

      In addition to the cherry juice I give him a multivitamin daily (SmartyPants brand with omega 3s and Vitamin D3) as well as probiotics. He also eats a mostly anti-inflammatory diet. Right now I don't give him wheat products, dairy, overly processed foods or gluten unless it is a special occasion like a birthday.

      Anyways, we have seen all of this help our son and I would have give anything to know all of this a couple years ago. He did take predinose, and it worked in the beginning, but started making his fevers occur closer together so we stopped. I hope other parents of kids with PFAPA see these posts because I know how horrible it can be to watch your child suffer. If you have any other questions let me know and I will gladly send you my email. Hope your son feels better!

      ~Courtney

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    2. My daughter is now six and will be starting first grade in the fall. There is no specific dosage. There are certain triggers that can cause a flare that you will learn, such as a holiday, invite to a birthday party. It is amazing that their bodies somehow recognize these things. The fall that Abbie had somehow triggered a flare because she was so upset. I think tart cherry helped Abbie's mood because she was able to get more consistent sleep. Before she wasn't sleeping well at all. She would wake up in the middle of the night and want to watch tv and be up the rest of the night. I wasn't getting sleep. A wonderful side effect of tart cherry is that it helps the body produce natural melatonin and so result in peaceful sleep, thank God!

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  8. Thank you for this recent update - my 6 year old started fever flares last year when she was 5 in the spring. her ped at that time did not believe us and therefore did not testing but put us on several supplements including Vit D. I saw your article. When her symptoms went away my ped told us we were wrong. Guess what my child IS your child (she was on Vit D as a baby and I wonder if that was protecting her from early onset). My child started up again in April every freaking two weeks! We had just switched peds who thankfully are very experienced with dx PFAPA and other fever syndromes. She's working on final steps for dx but bloodwork etc all point to PFAPA still. Mood, Vit D, sleep patterns, high anxiety, flares on schedule and the other 'APA' part. are you still on all of these? do you keep this list up to date?

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  9. Hello, I'm from Portugal and my son is 8 and he was diagnosed with pfapa when he was 3, but he started when he was 9 months. He started tart cherry three years ago and the fevers have become less frequent. But now, six months ago, his fevers have returned every months. Should I give him more than one capsule a day.I'm afraid that 3 years of tarte cherry isn't so good! What do you think? Can you help me?

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    1. Have you tried giving your son vitamin D3? Studies have shown that kids with PFAPA tend to be deficient in vitamin D. Also, an anti-inflammatory diet might help as well. My son is 3 and we are pretty sure he has PFAPA, so I am always looking for ways to help.

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