J.r.a.

C.,

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www.magosteenmd.com
www.pubmed.com type mangosteen in search area

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M. B

Dear C.,

I am so sorry....

You asked for "anything", and I feel compelled to tell you about a friend I have, who was diagnosed with severe R.A. She was in great pain and could only walk a short distance at a time by use of a cane.
She went on a diet, where bread was not allowed, and she realized that she felt much better. It turned out that she is allergic to gluten (which is in so many things; sauces, candies, chips, bread, pasta).
http://www.foodallergysolutions.com/food-allergy-news0204...

Good luck!

Hang in there. I was diagnosed with JRA at 8 yrs after having joint pain for years. Mine actually was at its worst when I was 19-20 yrs. I did not expect to have a family or be walking by 35. I'm 36 and have very few issues with my joints. Diet definately makes a huge differance, I had to get rid of night shade veggies, no eggplant, very limited potatoes. Each of us is differant. Check to local libraries for books on natural health.

Life can be great with JRA. Encourage good sleeping and eating habits and just keep moving. God bless and have faith.

I can't offer you anything but my prayers. I am so sorry you are going through this. It breaks my heart to hear about a child having to endure this. Just love her and yourself and your family. You will be in my prayers.

Hi Candance,

Your poor granddaughter! I didn't even know such a thing could happen to a little girl! I've never heard of this before. I am praying for her recovery. I have three kids of my own; ages 9, 6 and our little 1.5 year old baby. I can't imagine if they had to go through suffering with something like that.

My husband and I own our business from home. We just got back from a weekend training in Anaheim about our product and I am writing to tell you a little about it... we promote a business that sells Zrii. It is an ayurvedic health tonic that Depak Chopra endorses. It is safe for all ages. Needless to say we have been giving it to our own children for the last 9 months. This weekend over 25 people got on stage to give their testimonial to the benefits Zrii has had for them. Many of them talked about Zrii helping them with stiff joints, and many of them had been previously diagnosed with reumatoid arthritis. I am not saying that this is a cure for anything, but because of what I saw first had this weekend I feel obligated to share the information with you. You never know what might help someone else...and I sincerely hope you find a miracle for your granddaughter!

If you would like more information about it please go to our website: www.liveamalaki.com
or contact me directly.
I wish you and your family the best in health!

Sincerely,

B. Feuling
____@____.com
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Hi C.,

I am so sorry about your grandbaby. She is too young to have to battle this!

I was twelve when I developed JRA. It started in my right knee and continued to my other joints slowly. Like your granddaughter, it took a while to get a correct diagnosis, and since I had no physical appearance of anything wrong I took criticism from both family and teachers who believed I was exaggerating and faking. I felt so validated later on in life when my grandfather got arthritis and apologized to me for his behavior and acknowledged the pain I had suffered.

For me the fatigue was just as bad as the pain in my joints. That is something to be aware of for your little one. Her energy level may be low.

Because my age was so different than hers I am not sure what advice to give you. I know my doctors encouraged me to exercise but with little success. Swimming is recommended and maybe since she is so young you can establish a routine that becomes a fixed part of her life. Of course get an okay from her doctor beforehand.

Even though this is a hard, hard thing, please look to the positive. She does not have cancer and will live through this. I had to tell myself this many times during my toughest days. Kids with arthritis can still be kids. And still be very happy.

I do have some hope for you! I outgrew my arthritis. When I was 27 I became pregnant with my son, and my arthritis went into remission. My doctor at CHOC had told me years before that this was a possibility although the correlation was unclear. That was eleven years ago and now and then I may get a twinge or two when the weather changes, but overall am still going strong. I still seem to want more sleep than most but have accepted that.

I hope she doesn't have to wait as long for hers to go into remission. Hopefully there are new strides in care than the medicines available to me. Just be there for her and give her love, which I know you do now. That is the best medicine of all.

I hope that I was helpful to you. I will pray for your little one and all of you. But know that you will get through.

C.

Hi C.~

I am sorry that your granddaughter has suffered and for the family stress. It's a lot at one time. I would start looking at Yahoo! Groups for "J.R.A." I'm sure there's a support group of people who are new to this, people who have been dealing with a child affected for awhile, etc. Once you've got a support group, there might be suggestions of "the best" docs around the country. Reasearching cutting-edge or alternative therapies might give you a clearer focus. Try also connecting, as you've done here with other families in the similar situation. Your granddaughter might enjoy a playdate with children who have a body that functions "like hers". You may be able to check with the hospital for those types of connections. I wish your granddaughter the best and your family the strength to get through this with the upmost success.

HTH,
N.

Hi C., I can't offer any advice on this matter, but wanted to let you know i will be praying for your grandaughter. What is her name? I pray best wishes on your family. J. L.

I'm so sorry that your granddaughter is going through this. I'll be praying too. There is a theory that vaccines (children get so many shots in 3 years vs. when I was born in 1969) could be behind the relatively new rise of chronic illness (of autoimmune diseases) in young children.
http://www.mothering.com/articles/growing_child/vaccines/...

This is why I am careful with shots... we space them out and don't give every single one that pharmaceutical companies push on the public (via the CDC and AAP.)

I did a quickie search on "natural treatments" and found this.
http://www.raysahelian.com/rheumatoidarthritis.html

There must be online support groups for parents of children somewhere. That would be a good start.

I would read everything I could get my hands on about "natural" treatments.
In addition to seeing the pediatric doctors, I'd start seeing a naturopath.
The Eat Right for Your Diet books - find her blood type and see if she can be helped by avoiding certain foods and helped by eating others.

Switch to all organic food. A lot of times pesticides can cause pain in the joints.
Research diet and R.A. - I believe it can be helped by changing diet - no drugs or anything else necessary.

Oh, and do stop the vaccines as well. With a healthy diet she won't need them anyway, as her immune system will become stronger. If you look at most of the vaccines out there, they are for illness that is not life-threatening to those who have strong, healthy immune systems.

There is a test you can do for the IL1 gene that promotes inflamation. There is a supplement just for that problem. My husband tested positive and he takes the supplement and has a lot of relief from pain. I am not sure if this would apply but if you are interested I will look into it for you.

PLEASE PLEASE no more vaccinations for her. The body is attacking itself probably because of vaccinations, especially if there is no family history of this. You need to look at removing inflammatory foods (wheat, dairy, soy are big culprits), get on board with good omega 3/cod liver oils (check mercola.com for more info on this and they will have good products). If you want to have more information along this line let me know.

____@____.com

Hi C.,

My daughter was diagnosed with JRA at 2 1/2 in her right knee. She is now 5 1/2. It's a horrible hand to be dealt, but please know this: she runs, she jumps, she's in gymnastics and ballet. She functions like any other child except one of her knees is a little bigger than the other...

I would suggest you or your child joining a support group and trying to attend the JRA conference (it was just in Los Angeles this past July) to meet other parents/grandparents who are going through the same stuff.

Also, I don't know if your orthopedist or rheumatologist spoke to you about this, but it is also important to get your granddaughter's eyes checked by a pediatric opthalmologist. I know, it sounds weird, but there is an eye disease associated with JRA called Uveitis. My daughter has it and we would have NEVER known if our orthopedist hadn't mentioned it. About 10% of kids who have JRA also develop Uveitis.

It is REALLY important that you find a good PEDIATRIC rheumatoligist. We see Dr. Kerry Gallagher at UCLA and we like her.

She is on Methotrexate for the swelling int he eyes and knee and seems to be responding really well.

It is all going to be okay. The one poster was right, it's not cancer and it's not fatal. There is a strong chance she will outgrow it. That's what we are hoping for with our little girl!

Good luck to you, your son and granddaughter. PLEASE e-mail me if you need to vent, have questions or just need reassurance.

Best!

N.

Dear C.,

I've read some of the posts and would just like to share my own experience. I was diagnosed with an autoimmune "disease" almost 2 years ago after the birth of my son. I had ALWAYS eaten what I wanted prior to getting sick, but with an inflammatory disease you cannot do this. I cut out all inflammatory foods, gluten, diary, NO coffee, etc. and guess what? I'm in what they call remission and I do not use any prescription drugs. I'm completely healthy after climbing out of a very deep hole. No doctor told me about diet, but it's obvious. Food is medicinal. God gave us nature, our food and plants, and we can live and eat our way back to health. My son is almost 2 and he enjoys my foods as well, and is a very, very healthy boy. We had gluten free pancakes with banana this weekend. It's hard but once you get into the foods and the lifestyle, it's easy and fun because you feel great. RA is an inflammatory condition. Your granddaughter may always have a propensity towards inflammation but she's so young that if she learn how to eat and live now, she will have a wonderful quality of life. This whole thing was a huge leaning curve for me. At the same time as having a new baby, I was in a critical state with inflammation and ulcers because of an overactive immune system. Imagine, the body is attacking itself! After being healthy my whole life, I could not get my head around that concept and so went beyond what modern medicine could tell me. So, please consider changing your granddaughter's diet. I saw the best doctors in the country for my autoimmune illness, not one mentioned eating a low inflammation diet. God bless our doctors, but we also have a responsibility to think outside the box and to believe in nature and in our God given sources of life and health! The results of my diet are clear... no symptoms, no synthetic drugs! This inflammation process in your granddaughter will calm down and she too can live with minimal medication or perhaps completely free of meds as I am doing, as long as I avoid all inflammatory foods. She will get better. I'm so sorry she's hurting now. God bless you and your family, A.

Hi C....
I'm a Nurse Practitioner at CHOC and I've worked with the rheumatology team at CHOC for 5 years. I'm sure that you will have many questions throughout this process and make sure that you write them down and ask her docs. First and foremost make sure she has a good PEDIATRIC rheumatologist. It makes the biggest difference in the world. Second, don't read too much into the side effects of the medications that will be used. They are generally very safe and effective and the side effects are usually minimal. Once they find the right balance of meds that work for her make sure that she takes them. Even when she looks like she's OK the immune system is working in the background trying to destroy her joints. Also, research has shown that it's important to be very aggressive at the beginning of treatment because that's when the most joint damage occurs. Depending upon the type of JRA (poly, pauci or systemic) the type of meds used will be different. She may go in and out of remission. It's more like a "roller coaster" disease, very up and down. If it's pauci JRA she may one day go into complete remission OR it may progress to poly JRA. No guarantees....each child has a different immune system. If you want to chat personally please email me at ____@____.com

S.

I have no experience with this and don't have any advice. I just wanted to tell you I'm thinking of and praying for your granddaughter and your family, hoping you all find peace, answers to your questions, and relief from her pain/sickness.
Warm regards, N.

Wow, I am so sorry to hear about your granddaughter. Did she eat a lot of candy during halloween? i would bring it up with the doctor, perhaps it is a sugar thing. I really believe that sugar is very bad for children.

I spoke to a lady this summer that had a friend that was able to overcome her RA. If you would like to watch a dvd on what she did, please let me know.

God Bless!

J.
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