Monday, May 31, 2010

Alternative therapies - what others think... (long post but interesting feedback!)

RESULTS:
A JRA Parent in the Pacific Northwest had a question about alternative therapies for their child with JRA. We have a group of families in Portland, that meet & discuss arthritis once in awhile, but this discussion happened in email. Here’s the question & all 24 answers that came back.

QUESTION:
"One question I've really been wanting to investigate is how many parents
have been using naturopathic or homeopathic remedies or therapies
successfully? Do you know much about this, or would it be possible to find
out from other parents if they've tried alternative therapies?"
FEEDBACK:
1. We have tried multiple antioxidant juices (currently using JUS on a daily basis), however after extensive use, Chase continues to have the occasional flare-up in his knee. His neck appears to be stable. We have found that when the rest of his brothers and sisters have colds, he never catches the cold/flu. He has been healthy in that aspect, but we continue to use Metho and Humira to control his JRA.
2. (my answer) Charlotte is a 4 year old & was diagnosed at age 2 with Pauci-Juvenile Rheumatoid Arthritis (less than 4 joints) & severe uveitis (arthritis in the eyes).
We don't utilize alternative medicine exclusively, but in conjunction with our conventional strategy.
For Charlotte we:
1. Use a natropath & nutritionist for her diet. We are working on helping strengthen her kidneys, her immune system & her digestive system. All interrelated & all have been compromised at one time or another in the last 2 years since being diagnosed w/ JRA.
2. We saw an acupuncturist & will utilize her when we start to wean off of the meds to help retrain the immune system to work on its own. I documented that here: http://reece99.blogspot.com/2010/01/trying-something-new.html
But even the acupuncturist (who is fabulous & focuses on working with children) said that if we would have come to her in the beginning of Charlotte's flare in the joints & in the eyes, she would have said go see the Doctor (http://www.singingbirdpdx.com/). Acupuncture cant put the big stop sign up that was needed to stop the damage. Now that we have things calm & under control is when acupuncture & herbs can come into play & help RETEACH & strengthen the immune system (we dont want it strengthened right now, that's the problem, it doesnt know what its doing!).
So alternative meds on their own - No. I don't recommend. In conjunction with what Dr. Kingsbury can do, absolutely! It's all a team effort: The conventional meds, the food, the massage & herbs. It all works together to ensure no damage from the beginning & no damage continuing, helping the body to help itself.
3. My sister swears by it and gave me a name of someone to call. I've been leary to call.
4. At this point we are only using the medications as prescribed by the docto4s at Seattle Children's Hospital.
But, I'd be curious to know what other parents are doing too.
5. I've heard a lot about a gluten free diet...also dairy free...being helpful. I haven't tried it yet for my daughter- it's a BIG adjustment! I had a friend with arthritis who changed her diet dramatically (eliminated caffeine, alcohol, gluten, sugar and dairy)and was able to go off ALL of her medications.

6. my now 13 year old daughter Rachael has JRA. As far as
homeopathic remedies that we have used has only been flax seed warmies that
I make myself applied to a paining area. The intense moist heat sometimes
provides relief better than a dry heating pad. It is a much deeper heat.
Hope this helps some.
7. I have not tried natural homepathic remedies, or therapies. I would LOVE to do it though. Thanks for reminding me to do some research on it.
8. Very interested to hear replies. We saw a specialist in Boston and he told us to avoid immune system support supplements such as large quantities of vit c, zinc, etc. My son also had an iritis flare several weeks after receiving his flu shots. Probably coincidence- but thought I'd mention it.
9. The only thing we do regularly is make Ellie take fish oil supplements. I like the Nordic Naturals with D supplement.
10. I'm looking forward to seeing people's answers. When Alicia was diagnosed, I brought her to our naturopath and he said there was really nothing he would add or change from what our pediatric rheumatologists were doing, which at the time was methotrexate, anti-inflammatories, and prednisone. We know to avoid wheat, although she had sensitivities to that even before her JRA diagnosis.
11. Never used it and don't know much about it and never tried any thing other than what the Dr. K. ordered and that did fine.
But my two cents is, the remedies or therapies are as different and will work or not, as the individual needs. So whatever works - great.
12. I'm not sure if we can call it a success or not because it's sued in conjunction wih her methotrexate and the prednisone (which we are weaning), but I give my daughter about 300 mg (seems like it ranges from 200-400 depending on he day) EPA from fish oil. She has only had her initial flare in her wrist which has resolved.
13. I will be interested to hear the results of your survey. Jess takes one capsule (1000mg) of fish oil each day. She is still on 2.5 mg. of Prednisone (after 4 years) and we are going to try to get her off of that this summer. We saw a nutritionist last year and his recommendation is for Jess to take 2000 mg Curcumin, Evening Primrose 2 capsules a day and of course Vitamin D 400-1000 iu. His name is Michael Altman if you want to google him. He's written a lot of articles and teaches part time at Southern Oregon University. I read one of his articles on the anti-inflammatory properties of Curcumin. It's very interesting. It stains your hands when you pick up the capsule so you have to watch for that. If you rub your hand on your clothing you have a permanent stain (blast!). I've tried putting all these supplements in a smoothie for Jess but that didn't work too well. She is also on Enbrel, Methotrexate pills, Ibuprofen 800mg daily, Calcium, and Folic Acid (see why she is reluctant to take a bunch of supplements?)
14. I have thought about this over the years but have never tried any naturopathic/homeopathic therapies. My daughter's JRA is so painful and inflamed while not on Methotrexate that I just couldn't bear having her in pain while I tried other options. However I would LOVE to know of anyone who have tried and benefited from natural therapies!!!!! So please let me know of all the responses as well!!!!!! I am so glad this question has been addressed!!!!
15. We did 4-5 months of acupuncture with our 12 year old daughter. She went every other week and enjoyed the treatment for the most part, it was relaxing, but it was expensive. My husband and I could not tell if it was the meds. that were taking her symptoms away or the acupuncture. We decided to stop treatments and have not seen any change in her condition without the acupuncture so I think the meds. are taking care of her pain. If Dr. Cartwright takes her off of her meds. and her symptoms return we might try the acupuncture again before we put her back on the meds. to see if we notice any improvement.
I was also wondering if anyone has seen an improvement in their child's condition with a gluten free diet.
16. Love this question and would be VERY interested in knowing what you find out. I have often thought about this very thing, but have not had a chance to research it. Thanks for putting it out there, I hope there is a good response! Let me know!
17. We are doing cranial sacral therapy with Emma. Emma enjoys it and I think it's pretty amazing. I'm not sure if it is working because we started methotrexate right about the same time. I would recommend it for anyone to try.
18. No we haven't but thought about using them, I would be curious to find out my self.
19. My daughter has gone to a physical therapist for e-stim and mobilization of her joints. The electric stimulation has had amazing results in reducing the swelling.
20. I have not tried any forms of alternative medicine, but this is a very interesting topic and I am excited to hear what people have to say. I work with physicians who have suggested acupuncture or acupressure. I have not tried that yet, but wonder if anyone else has.
Thanks so much for all you do!!!
21. We are trying accupuncture. Kiara had a severe reation of inflamation in her back the second treatment. We have been much more conservative. THe treatment includes a massage. That part she really enjoys and finds much comfort.
22. We have tried many different things thru the years, and we have kept a detailed diary for 11 years. The disease ebbs and flows, and we have found no specific rhyme nor reason to the good days or bad days. We always used alternative therapies in conjunction with traditional medications. It is our belief that the healthier the lifestyle choices, the healthier the child. It won't cure the disease necessarily, but it will make her the best she can be so the traditional medications can work their magic. We have tried naturopaths mainly for the itchiness of the rash. It didn't work. We tried homeopathic remedies for it to no avail. On the recommendation of a pediatric neurologist we tried acupuncture for her headaches. After a couple of months, we stopped on the advice of the acupuncturist because she didn't think she could help us. It was relaxing for Marian though. We have given Marian flax seed, vitamin D, and fish oil pills in the past. What I have learned is to drop the flax seeds because it provides ALA omega 3s, which is not processed very well into the more needed EPA and DHA oils. So we have stayed with the fish oil pills and Vitamin D, and we take them ourselves for general health. Oh, the things we have tried thru the years, and Marian was a trooper throughout. Grinding flaxseed every day and making her take it. Giving her liquid fish oil and flax seed oil. Putting flax seed oil on her skin to relieve the itchiness. I once grated ginger and made a ginger poultice for her chest pains. That was a stinky one, and the thought of it still brings a smile to my face. We do eat all organic with our produce, meats, eggs, and dairy, and we have done so for about 15 years. I try to cook extremely healthy. We have a large garden and grow a lot of our own food. Our garden has been all organic for the last 18 years. We believe all of this is better not only for Marian's body, but for ourselves as well.
Every single person's body is different. Marian swears that weather matters. She says that warm weather helps her joints. It isn't a cure or else everyone living in a warm climate wouldn't ever have JRA. But for Marian it matters. She is off at college, probably eating terribly, and she is doing the best she has done. Is it the weather difference? I don't know.
23.I have definitely been moving in this direction with my son, who is almost sixteen
with polyarticular...he is on 6 ml. injections of methotrexate weekly and in addtion we are doing 2 - 1000 mg. purified fish oil in the am, and try to remember to take 2-1000 mg in the pm.(inflammation reduction)
He is taking appox.1200 mg. folic acid, and a standard dose of bromelain, plus an herbal supplement called monolaurin, with specific doses prescribed by an integrative medicine physician. Also doing calciuim and daily multivitamin with 1000 IU of D as his D levels are good. This same physician has suggested he avoid sugar, but this is almost impossible with a teen. Hope this helps. We update Dr. Kingsbury on vitamins/herbals at every visit and don't start anything without his okay.
He is generally doing very well, only an occassional ache in one arm for short periods, I hope this helps.
24. Thanks so much for sharing. It’s really interesting how many families have tried alternative treatment. I kind of thought we were odd, but I guess not! =)
I noticed one of the parents mentioned going off of dairy. We are a vegan family. Actually my husband does eat some dairy when I don’t get a lunch packed for him. But at home, we are vegan . Annelise has been raised as a vegan. I’d be happy to help anyone wanting to cut down or eliminate dairy and/or meat from their diet. I have done numerous cooking classes. I am not medically trained, but have done the classes in conjunction with medically-trained people. It’s not as hard as it might seem. Anyway, it might be worth a try for some parents. I know getting off of dairy has brought some people some relief with RA—I’m not sure about JRA. Obviously Annelise has JRA and she is vegan, so it’s not a panacea. I did have one M.D. tell me that he thought that is one reason that her inflammation is not worse. Who knows for sure.
I’m a HUGE advocate for exercise, too. I think that is one of the biggest thing that has helped Annelise. She is one swim team and swims hard 3x/wk, plus a gym class 1x/wk.

Monday, May 24, 2010

Celebrating Friends conquering JRA

Our sweet friend Addison has been off of Methotrexate since April 1st. Its no April fools joke that she's doing great & it was time to see if her body was learning to retrain itself.

CELEBRATE!

Its a GREAT day to get off of the drugs! And all of us JRA parents know that at any time the body could get confused & the need will be to get back on the drugs. Addison's parents know that & are ok with getting back on the wagon if need be.

Its usually the initial getting on the drugs that's the hardest part. Accepting that we need to give our (then) 2 year old's a shot every week of a chemo drug that acts as a immune suppressor, is a tough decision to swallow.

But now that Addison's mom & dad have seen the amazing work that methotrexate did, they don't hesitate to say, "if she needs to go back on it, we will hop on it immediately."

TODAY YOU CELEBRATE! And tomorrow you celebrate and then you stop thinking about it, you just carpe diem! And when Addison is running in gymnastics, you smile knowing what used to be! And when Addison gets on her tippy toes in ballet, your heart warms because you know once upon a time that wasnt always possible.

We celebrate the drugs & their abilities! And we also celebrate the day our children are off the drugs.

Today we celebrate Addison! (Last Halloween Addison & Charlotte WALKED all over the neighborhood together gathering candy as a bumble bee & Santa's helper!)

Sunday, May 23, 2010

Swim, Bike & Run For Kids with Arthritis

FRIENDS OF CARRA benefit - The 9th annual Hayhurst Kids Triathlon on Saturday, May 29th.

Are you in the greater Portland, OR area? Here's the deets (register) & most importantly, its sooo fun!

The 9th Annual Hayhurst Triathlon Benefiting CARRA is a triathlon designed specifically for children ages 3-13 and their families. Participants swim 50-100 meters, bike 2 miles and run 1/2 mile. Parents are encouraged to participate in the event with their children. The triathlon is held at the Conestoga Recreation & Aquatic Center in Beaverton, Oregon.

All proceeds go directly to Friends of CARRA to support reasearch to find the cause and cure for arthritis and other rheumatic diseases in children.

Fun Memories! This was Emma & Ellie's 1st year in 2008 (they look so little!!) CLICK

Memorial Day weekend will be the girls 3rd year participating & I mean ALL girls. This is Charlotte's 1st year to join her sisters in all 3 events - even the bike (with training wheels). It will be a blast! Join us?

Can't make it but think its fantastic? Tell Mr. Hayhurst: hayhursttri@gmail.com

Friday, May 21, 2010

Treatment at home?

UPDATE:
Since this post, we have talked w/ our Pediatric Rheumatologist & he's comfortable w/ Charlotte getting her remicade treatments at home. The pro's outweighed the only con we had: the what if she has a reaction (which she hasnt in 2 years being on it). So we are giving it a go....

ORIGINAL POST:
Our insurance (CIGNA) is transitioning their Remicade patients over to having remicade infusions done @ home.

They called today asking if we would be ok with that?

"i realize she's 4, but if its ok with the dr, we wanted to ask you."

why? its less expensive for Cigna because they have exclusive contracts w/ infusion companies.
They would find a pediatric nurse, see if its doable according to where we live (so not a done deal - would only investigate possibilities if we say its ok).

She said she contacted our Dr. & got his ok for Charlotte to receive Remicade @ home.

I asked them if they have any other pediatric patients under the cigna umbrella doing this at home. She said she had that question out & has not heard of any.

I said that off the top of my head my only concern would be a reaction to the Remicade but seeing that she's been on it for 2 years & hasnt had a reaction, the liklihood of that happening is low. So I cant think of any other con's, except "who is this person in my house..." :)

hmmmm...... thoughts?

Wednesday, May 5, 2010

Alternative Strategies

A question came today from one of our JRA families in the Pacific Northwest:

"One question I've really been wanting to investigate is how many parents have been using naturopathic or homeopathic remedies or therapies successfully? Do you know much about this, or would it be possible to find out from other parents if they've tried alternative therapies?"

Here was my response:
Charlotte is a 4 year old & was diagnosed at age 2 with Pauci-Juvenile Rheumatoid Arthritis (less than 4 joints) & severe uveitis (arthritis in the eyes).

We don't utilize alternative medicine exclusively, but in conjunction with our conventional strategy.

For Charlotte we:
1. Use a natropath & nutritionist for her diet. We are working on helping strengthen her kidneys, her immune system & her digestive system. All interrelated & all have been compromised at one time or another in the last 2 years since being diagnosed w/ JRA.

2. We saw an acupuncturist & will utilize her when we start to wean off of the meds to help retrain the immune system to work on its own. I documented that here: http://reece99.blogspot.com/2010/01/trying-something-new.html

But even the acupuncturist (who is fabulous & focuses on working with children) said that if we would have come to her in the beginning of Charlotte's flare in the joints & in the eyes, she would have said go see the Doctor (http://www.singingbirdpdx.com/). Acupuncture cant put the big stop sign up that was needed to stop the damage. Now that we have things calm & under control is when acupuncture & herbs can come into play & help RETEACH & strengthen the immune system (we dont want it strengthened right now, that's the problem, it doesnt know what its doing!).

So alternative meds on their own - No. I don't recommend. In conjunction with what Dr. Kingsbury (Pediatric Rheumatologist) can do, absolutely! It's all a team effort: The conventional meds, the food, the massage & herbs. It all works together to ensure no damage from the beginning & no damage continuing, helping the body to help itself.