Sunday, January 24, 2010

Trying something new

I took Charlotte to an Accupuncturist a few weeks ago after having several email conversations & phone conversation about Charlotte's Rheumatoid Arthritis & Uveitis.

I explained to Andrea that Charlotte has had this disease for 2 years & has been highly medicated during that time, which has worked to halt the flares, so now we are in the transition of extending the intervals of Remicade, seeing the end of Remicade at some point (maybe the next year), staying on Methotrexate to make sure its holding it all by itself & then transitioning off of it). At the beginning of this disease, I was needing to go down ONE road (western medicine) to curb & halt the continual bombarding the arthritis was doing to Charlotte. Now that we are in that transition of getting off of these meds, I want to help Charlotte's body retrain itself to handle the future messages that cause the flares (in her eyes & joints). I believe a mixture of western & eastern medicine can help with the future. Andrea was SOOOOO respectful of our thought process & agreed that Chinese medicine is not for halting the aggressive attacks arthritis was doing to Charlotte's body. She agreed we have gone down the right road for Charlotte. Now... we are ready to think outside the box....

Currently I am giving Charlotte a massage each night in areas on her body that Andrea taught me to do (i have a chart on a clipboard & Charlotte loves it, she asks for it each night).
Per Andrea:

From a Chinese medicine perspective everyone has some combination of Excess (things we don't want around in the body) and deficiency (systems that should work better and for whatever the reason do not). I feel the Pediatric massage is so great at supporting and tonifying deficiency and acupuncture is really great at clearing the excess. The herbal formulas are able to do both and are generally designed that way- to take away what we don't want or need and support our energy for optimal functioning.

For JRA treated with methotrexate and remicade, Charlotte will best benefit from the massage and herbs combined, possibly the acupuncture. While she is still doing the drugs it isn't sensible to have her taking herbs to "benefit" her immune system. But when she gets off the drugs we will need to be ready to introduce the herbs right away. The massage will help her qi to build and improve her transformation and transportation process so that she can clear the excess that is called "Damp Heat" in Chinese medicine (and Rheumatoid arthritis in allopathic medicine) as well as develop healthy "defensive qi". Keep up with the massage!

The herbs will incorporate a two part strategy- adaptogenic herbs to help the immune system come out of their fog (suppression by drugs) unconfused and ready to calmly participate, and a formula designed to clear excess heat (which she still has) drain a little damp, and support better transformation and transportation. I have a formula in mind so let's meet after you go to Boston and get that input.

I hope this helps, and I am always open to discussion. Let me know how it is going.

All the best,

Andrea P. Fisk, MSOM, Dipl. OM, L. Ac

Friday, January 22, 2010

Questions we 1st asked with JRA

Organizing the computer files, I came across this in my "JRA" folder. All the questions we had written out for our 1st pediatric rheumatology appt when Charlotte just turned two, 2 years ago. We appreciated going through each one of these questions thoroughly with our doctor. Want to know the answers to any of them? Toss me a line!

Some of them seem crazy to me now that I know this disease a bit more. Some of the questions, I have stories to (1b - my head is emphatically shaking NOOOO!!!!! What good would it do?! My bff DID have the sibling tested & then she got to worry about it every day). And some make me sad to think back about how scared we were (6) & some I just laugh at myself like "you had NOOOO idea the journey this would take..." (11)

Here they are. The questions we 1st asked our pediatric rheumatologist when our child was diagnosed with Juvenile Rheumatoid Arthritis.

1. Is this an auto-immune disease that was triggered by something such as a virus?
a. Is she susceptible to any other auto-immune diseases?
b. Should her sisters be checked to see if they carry this auto-immune disease?

2. Is JRA something she can grow out of?
a. Is that common? Have you seen it?
b. What are Charlotte’s chances of outgrowing it?

3. Sports – is she limited to what I should allow her to do?
a. Can she play soccer next year?
b. Can she do gymnastics or dance?
c. Are there sports that I should discourage & are there sports I should encourage (swimming)?

4. Do you foresee Charlotte being in a splint?
a. She is just learning how to perfect her walk & her run at age two, and this pain is really causing her to alter herself, how do we get her to walk normal again?
b. Will she be in physical therapy?

5. Over time – is this a disease that eats at her bones?
6. Will this shorten her lifespan?

7. Will JRA affect her growth in any way? Will her body grow normal?
a.Do you also recommend regular visits to the chiropractor?

8.Will she pass this on to her children?

9.Is there a chance that her MONO – will go to other joints?

10.If Charlotte has JRA, is that considered a disability? Is she considered disabled? Is she considered Health Impaired?

11.Should we be concerned about her eyesight? Should we see an eye dr?
a. Children diagnosed before 7 years old with pauciarticular JRA and a positive ANA are at the greatest risk of developing chronic uveitis. Their eyes should be checked every 3 months for several years. Acute or sudden onset of eye inflammation is called iritis. This may occur particularly in the spondyloarthropathies
b. Will we have a team of people looking after Charlotte? For how long?

12. Are there things in her diet that trigger joints to be more loose or more stiff?

13. If steroids are the route you consider, are there alternatives? I have concerns about steroids being used in a young body – 2 years of age is very young to me. How long would you foresee steroids being used?

Monday, January 11, 2010

And then there was this...

This week in "Day's Of Our Charlotte"

(sung to the tune "oh Tannenbaum")

Oh WebMD, Oh WebMD, how lovely are your answers!
Our child, Charlotte
Is a magnet to all bad things
An open cut
Is a target ring

Oh WebMD, Oh WebMD, how lovely are your answers!

Charlotte had a cut on her nose on tuesday that turned into a rash around her eyes on Saturday. Diagnosed it as IMPETIGO:

Understanding Impetigo

What Is Impetigo?

Impetigo is a highly contagious bacterial skin infection. It can appear anywhere on the body but usually attacks exposed areas. Children tend to get it on the face, especially around the nose and

mouth, and sometimes on the arms or legs. The infected areas appear in plaques ranging from dime to quarter size, starting as tiny blisters that break and expose moist, red skin. After a few days the infected area is covered with a grainy, golden crust that gradually spreads at the edges.

The most common cause of impetigo is Staphylococcus aureus. However, another bacteria source is group A streptococcus. These bacteria lurk everywhere. It is easier for a child with an open wound or fresh scratch to contract impetigo.

Most people get this highly infectious disease through physical contact with someone who has it, or from sharing the same clothes, bedding, towels, or other objects. The very nature of childhood, which includes lots of physical contact and large-group activities, makes children the primary victims and carriers of impetigo.


Stay tuned next week... when Charlotte "let's give 'em somthin' to talk about" hits the slopes for the 1st time!