Tuesday, April 2, 2013

Helping Others ...and a New Diet! Pain, Pain, Go Away!

Running to support Claire!
Savannah had the wonderful opportunity to assist her best friend Claire (who has cerebral palsy) with Miracle League Baseball this last Saturday (Miracle League is for the physically and mentally challenged).  She encouraged Claire from the stands and then helped her run the bases in the last inning!  It was wonderful!  We have found the best way to get Savannah's mind off her own painful joints is by distraction...and what a better distraction than helping someone else in need.  Also, being around others with their own challenges helps Savannah not to feel sorry for herself... Hey, we all have some sort of challenge, right?!
Savannah, Claire, & Olivia


Update on Savannah: 23 Infusions of biologics, 70 shots of Methotrexate, and too many oral medicines to count later...and Savannah's pain is not so good.  Not sure if the medicines have quit working or what, so we are trying something different (and with no negative side effects!).  Savannah's juvenile rheumatologist challenged her to go dairy free for three weeks and see if that helps with her inflammation and pain...though her rheumatologist thinks the diet change is "madness" and will not help.  Many have said that removing dairy and gluten from one's diet can really help improve one's quality of life and help alleviate pain...even autoimmune related.


Well, we are taking the challenge and stepping it up!  We, as a family, are going dairy and gluten free in hopes it will help alleviate some of Savannah's pain and improve her quality of life.  I have to say, I would love to prove Savannah's doctor wrong on this one!!!  So, we are on day "two" of our new diet plan...I will let you know how it goes!
Any and all advice is welcome on gluten, dairy, or paleo dieting...especially if you have some kid friendly recipes that are dairy and gluten free!  Let the diet "Madness" begin!!!


When the game was over, Claire and Savannah's bodies were over, too!
Photo form left to right:
Savannah being carried by her father, Claire's little sister being carried by Olivia, Claire being carried by her father.
What we will do for the ones we love.


16 comments:

  1. Don't let the rheumatologist discourage you! My son is 5 and has had RA for almost 3 years. Our rheumy told us diet would have no effect but he was so so wrong. My son was 2.5 when he started limping and within a couple months he could no longer walk. After going to many doctors I suspected RA and began researching. We immediately decided to go on the GAPS diet (similar to paleo autoimmune protocol) My son was very picky and refused to eat any of the food for three days. It was awful, but I stuck to my guns! :) On the third day he woke up and jumped out of bed yelling mommy I'm all better! (talk about a tear jerker) Almost all of his swelling was completely gone! From that point on we have struggled with diet because gluten and dairy free was not enough. He also reacts to quite a few other strange foods (flax seed, avocado, tapioca...)I knew food was related but had a hard time figuring out what foods caused the problem because every time we introduced something new he would flare up again. We had to put him on prednisone and methotrexate to control the pain but we continued on with diet and I'm so glad we did. Finally we did an elimination diet where he would eat just a few foods for a week to get the swelling down and then slowly introduce foods one by one. It makes for interesting meal times, but it is so worth it to have my son be able to run and play with his friends. We are now trying homeopathy like Lauren Vaknine. I've heard of a lot of cases where it has really settled the immune system down so its not freaking out at different foods anymore.
    I'll keep you guys in my prayers, it is such a hard road!
    -Monica
    monicacarsonathotmaildotcom

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    1. Hi Monica! After randomly searching the internet for hours every day for several months now looking for information on treating JIA holistically I came across your post. Have you have success over the years using the GAPs diet to control your sons JIA? We have a 4 year old who was just diagnosed a few months ago and I would love to hear what youve learned!

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  2. Monica,

    Thank you for your comment. It is comments like yours that are more valuable to me. So far, we have seen no improvement with gluten and dairy free...but we have only been on it about two weeks. Savannah originally committed to a three week trial...which will be over in 8 days. I am now wondering whether to continue the diet with her past three weeks, try something different. It is so hard with a ten year old...there is nothing cool about being gluten and dairy free at this age. If I had started her younger, she would not know any different. If she was older (teenager), it may be "cooler" to be eating so healthy. She has followed the diet like e champ...no cheats, but she hates it for the most part. The fact she has seen no improvement is not helping, either. Any advice??? Does your son eat any sugar at this time? I have Savannah down to some gluten and dairy free chocolate, "So Delicious" Ice Cream (dairy and gluten free), or one Enjoy Life Cookie. She may have one of these choices a day...and in an extremely small quantity. I hate to take it all away...Oh, I wish I knew the secret to make it all go away!!! She is also taking L-Glutamin, Fish Oil, and a Probiotic daily. Thank you for sharing. -Jenny

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  3. Jenny,
    I totally understand, it's really hard with a younger child too! What we did with my son is pick a couple of foods that he doesn't eat very often but really likes and make a challenge to eat only them for 3-5 days. We also stopped all supplements. His foods were 100% bison burgers(only salt), pears and watermelon. Pears are pretty hypoallergenic and its fairly easy to get bison here. We make it fun and do awesome things that keep his mind off of food. We have had to do this several times. The first 2-3 days we see no improvement, then on the 3rd-4th day he wakes up and the swelling is almost gone! It's amazing! After he realizes that he can run and play pain free, food is not such a big issue. The only way this might not work is if you pick something that is causing joint pain so pray hard before you pick something! :) After you find some foods that work, its downhill because you can start adding in anything you want, just wait a couple of days in between to watch for a reaction. My son reacts within 12-24 hours of getting a food that bothers him but some take longer. There are so many diets out there but none can guarantee results because people are so different. The GAPS diet usually gets great results for autoimmune conditions but my son got worse because a lot of the beginning foods cause him joint swelling. Any food can cause swelling but the common foods for joint pain are wheat, dairy, eggs, nightshades (potato, tomato, pepper) and oxalates (nuts, grains, beans, seeds). This doesn't mean she won't be able to ever eat these foods, its just a good idea to take them out at first. I know someone who got complete relief from just avoiding dairy, soy and corn and could eat everything else. Its so individual. There's a really good book called Conquering arthritis that I pull out when I need encouragement. She goes into a lot of the science behind this. I know diet works for my son and has worked for others. It is so worth giving it your best shot. Everyone was so discouraging towards us but God gave us the strength to keep going and everyday I am so thankful! I'm also so grateful for the people that took the time to help me along so feel free to email me anytime! monicacarsonathotmaildotcom

    -Monica

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    1. Monica,

      This is brilliant...so simple, but it makes total since! I am going to finish our "three week challenge" with the gluten and dairy free diet (to go along with "you finish what you start" motto in our family). If I still see no results(we have completed two weeks, have one more to go), I am going to try this...though I may wait until school is out for this one. I have already printed your note off to refer to as needed (and for encouragement!). I pray God to send me people like you. Even if it doesn't work, I will have peace that I have tried and exhausted this avenue for Savannah's pain relief. Monica, you are a blessing!!! Thank you.

      A thankful mother,
      Jenny

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  4. I'm so glad to be of help and we will pray it works for her!

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  5. Jenny,

    I have a 6 year old daughter with JIA too. She has been diagnosed since the age of two. I also have been trying to address her pain and inflammation issues with diet. Our rheumatologist shows little faith in controlling it that way. However, I now feel deep down that her life can be dramatically improved through diet. We have eliminated gluten and dairy for quite awhile, but now are taking things a step further and are also going Paleo at the suggestion of our Naturopathic Dr. Its only been about a week, but time will tell I suppose! I'm also trying to limit her sugar intake. Its a tough road sometimes huh!? Navigating birthday parties and social events is sometimes tiring, but if it helps, then of course as the Mom you do what you need to do. Anyway, I was excited to see another Mom out there who understands what life is like, and is also going down this dietary road! I hope Savannah is doing well!

    Lisa :)

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  6. My DD is 9 and recently diagnosed with JIA. Our family has strong environmental / food allergy / intolerance issues. We're giving the failsafe / elimination diet a go in the hope that this will reduce her inflammation. It can be really really tough with such major food restrictions, but ultimately worth it if it can identify foods that cause issues and foods that don't. Best wishes with it all.
    Hannah

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  7. Hi,

    Praying for Savannah! Poor girl! I am happy to have found this thread. It always helps to share information. When you are trying to get your child better so many questions come up. It is great to hear others experiences. My son came down with JRA at 6 months old. Right after I started him on solid foods. The Rheumy said there was no connection. Well, he fired me months later as we had differences of opinion. Well, 1 1/2 years down the road I am still working on his gut. I had gotten a list of foods for the GAPS diet and have only let him eat from that list. He did not get any worse, but did not get significantly better. Now that the GAPS book is finally here, as it was out of print, we are starting the Stage 1 Initiation part. I am really hoping it works.

    It was interesting to read how just going GF or Dairy free it not the total answer. It really depends on how starchy the food it as well.

    I wish you all the best of luck figuring out the root cause of Savannah's JRA.

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  8. Catherine in Alberta, CanadaNovember 18, 2013 at 3:11 PM

    Hi Jenny. Thanks for writing this blog. I am a mom of a girl with JIA who is 5. She has had swelling since just before she turned 4, and it was only diagnosed about 5 months ago. We are trying diet modifications as well. I am curious about the book called "Conquering Arthritis" that Monica mentioned in her comment. Did you read it? Monica, if you are still out there, can you tell us if it adresses diet much?
    I have been doing the Specific Carbohydrate Diet for myself for 3 years now as I have severe Crohns disease and it really helps. My last bad flare was only fixed by Remicade, though. It is interesting/sad how arthritis and IBD [like Crohns] are so related. Anyway, I have not actually put my daughter on the SCD as well... she would hate that and I'm not totally convinced that it would be worth the struggle. I know that diet changes directly affect a disease of your intestinal tract. That is obvious. Even though my GI docs are strangely opposed to most diets. But... for a disease like arthritis where the inflammation is in the joints... man, it is tough to say if a diet will work for most people. Obviously it worked for Monica's child, which is so awesome.
    Sorry for all the rambling. Anyway, for now my daughter is on Naproxen and eating gluten free. She has very, very little pain. Her arthritis is a very mild case so far, I think. We are sure praising God for that. But, the rheumy is still saying that she should go on Methotrexate for the little tiny bit of inflammation that is still there. You can't even visibly notice it. But, when the Physio does the measurements on her L ankle and L wrist you can tell there is still a small issue. I feel like putting my daughter on a chemo drug just for this little bit of inflammation is ridiculous. We also rub some essential oils [nutmeg and ginger supposedly have anti-rheumatic properties] on her joints and get her to take fish oil. I don't know.... It is so minor right now that I am quite happy about it. I sometimes wonder [ok, I wonder A LOT] if, because we live in Canada and a lot of prescriptions are free and all the doctor visits are free, if they go a little bit 'prescription-happy' on us up here. Would she really be shoving the MTX at us if we had no universal health care? Well, maybe it's a cheap drug, I'm not sure. But she gave us the Enbrel and Humira pamphlets the first time we met her!
    And closing out here I will also say that they did joint injections on her a few months ago and they were horribly painful for her once the painkillers from the hospital wore off. She wailed and cried the 2.5 hr drive home. So that was a waste of time. Then we did a round of prednisone - only 15mg and then weaned off - and that worked! It's been 2.5 months since finishing the prednisone and she is, like I say, basically normal. I think this is what people with severe cases would call remission. Any thoughts on resisting the rheumy's push for Methotrexate?

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    1. Catherine,

      I had to laugh this morning! I was telling Savannah about your email and about your child trying the diet to help. She said "It's awful...When you go to a birthday party, you can't eat any cake!!!" Hope this makes you smile like it did me. Keep trying, girl...and hang in there. I think you and your girl are awesome for being brave enough to try the diet...it may work!!!
      -Jenny

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  9. Catherine,

    I am so happy you found the blog! Savannah and I know if it can help just one person, it is all worth it!
    I am also happy to hear diet has made a difference in your life! I truly believe diet is the key to getting through and conquering arthritis and other autoimmune diseases for some people out there. I have seen it work, that is why my entire family tried the gluten and dairy free (more like paleo) diet. Sadly, Savannah saw no improvements after three weeks of being strict on this diet...and I told her she only had to try it three weeks. I must be honest, it was tough. She said, "I already have to deal with a lot more than the average kid. Please don't take away my favorite foods, too." However, she was brave enough to try it. I am thankful and now I know it did not work for her.
    As far as the diet helping...I really think it all depends on what is triggering your ailments...which is different for everyone.
    I have also read of a family who had two children with Juvenile Arthritis. They went gluten and dairy free. Within a few days of starting the diet, one child's pain was almost completely gone. The other child, the diet did not help her at all. Same exact diet, same disease, two totally different outcomes.
    I do give my daughter L-Glutamine, fish oil, and probiotics...and I think it helps.
    As far as your Rheumy's aggressive treatment plan for your daughter even though she has minimal problems/pain...this is the protocol the rhemys all take here in Alabama as well. Methotrexate is given out at the first diagnosis of JA...to keep the disease under control. They have seen that aggressive treatment is key to helping those with JA. You could wait and see for a bit...especially concerning taking the biologic along with the methotrexate. I have a close JA mom/friend who refused embral for her daughter and just did methotrexate for the same reasons...her daughter was not that bad. She has now been in complete remission for at least a couple of years now...without ever starting the embral. (She currently takes no meds. at all). However, the one BIG thing I have learned is that every child is different. What works for one, may not work for another. You have to pray about it and see where God and your heart leads you concerning care and meds. By the way, methotrexate is extremely cheap. Humira and Embral are expensive. Also...Predisone - HATE IT! Savannah begged me to never let a doctor put her on that again! Though, there is probably a time and place for Predisone, too, with some children...just not mine! (:
    So, maybe consider taking the methotrexate for now...but, if you are not ready, you could always wait a bit. If your daughter starts really hurting and her quality of life is effected, you will know it is time, then, for sure. However, by taking the methotrexate now, you may avoid ever getting to a really bad pain level. None of us really know from one child to the next. I will be praying about it for you...that God will show you which direction to take with the meds.
    I hope some of this info. helped. Please, write back if you have more questions. I am in contact with a lot of JA moms and have learned a lot from them.
    Blessings to you,
    Jenny (Savannah's mom)

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  10. Jenny,
    Have you read this article? http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html?_r=0

    It helps outline that if you do a gluten free diet you really need to give it 6 weeks before you can see the effects. My daughter was diagnosed with JA last August and I put her on the diet right away and literally at 6 weeks and one day we saw a difference. She stopped limping and felt better.

    I can completely understand your daughter's feelings on giving up her favorite foods. But if you can ask her to try it for two months straight with no cheating at all and you can prevent cross contamination it really might make a difference.

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  11. Hey Jenny,
    My name is Rebecca.
    I have never done this blog thing before. A friend found this blog and told me about it. My daughter Shea is 10 years old and was diagnosed with polyarticular juvenile inflammatory arthritis about a month ago but just went yesterday to Nashville to see a pediatric rheumatologist. They want Shea to come back in a few weeks for steroid injections in her ankle and hand. Then the rheumy wants us to immediately start methotrexate injections at home. They said she may have to do this for 2 years. In 12 weeks if the methotrexate doesn't work they want to add Enbrel. I just can't imagine my baby girl having 2 shots a week. And the side effects scare me. I have heard of the GAPS diet but do not know much about it. I am getting so many different suggestions from friends. I do not know which way to turn right now. I have cried all morning and feel so overwhelmed right now. Some say follow dr. Orders. Some say do gaps diet or gluten free and wait on what doctor says.Any help or suggestions would be appreciated. I am a Christian and know that God can heal her, but I also know he doesn't always choose to and we have to endure what He puts before us.

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  12. Hi, Rebecca! I am glad you found this blog. Please know, you are not on this journey alone. I remember feeling so overwhelmed I wanted to scream! The GAPS diet did not work for us, but I have heard it has worked for others. Everyone responds differently to diets and medicines. My daughter did methotrexate for two years (along with Remicade and Orencia infusions) and had little success. She now takes Sulfasalazine (an older drug they used before methotrexate) and is doing pretty well. She use to only be able to write a few letters without her hands hurting to badly to write. Now she can write several sentences and has returned to doing art! She also runs with less pain. Sulfasalazine is a good drug for spondy patients (which Savannah has)...but, it is trial and error finding the right medicine to help your child. Two years on the drug...interesting. Many kids are on some kind of drug a good part of their lives...or until they go into remission on the medicine for a year, and then off the medicine for a year...which is true remission (the other is medicine remission...remission due to the medicine, but as soon as one comes off the medicine, the JIA returns). Weigh out your pros and cons of any treatment...and you can say no. However, if your child is not doing well without medicine, the pros of medicine may definitely outweigh the cons. I will be praying for you and your child. I was born and raised in Nashville...there are some great doctors there. We are seen in Birmingham...some great pediatric rheumys their, too! Please write if you have any more questions or just need a shoulder to lean on. -Jenny

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