Juvenile Idiopathic Arthritis

“I am not what happens to me. I am what I choose to become.”

March 23, 2017

hands-340912_1920I was in Goa for a work conference when I got a call from my husband. My 12 year old daughter had severe pain in her left hip. The slightest movement led to excruciating pain and it had gotten so bad over the night that she could not walk to the bathroom and my husband had to carry her.

My mind raced back to the last three months. Something was not right.

Early Jan, she had complained of shoulder and wrist pain which we put down to a music injury. An ankle swelling had followed put down to banging it somewhere in school carelessly.

And now this.

Cutting my trip short, I came back to Mumbai, and having come to the rapid conclusion that this needed immediate investigation, got an appointment with our paediatrician the very same day.

March 26, 2017

Physical exam, flurry of blood tests, an appointment with a rheumatoid paediatric specialist all in a blur over three days and we had a diagnosis – Juvenile Idiopathic Arthritis. And a lot of words to swim in. AutoImmune Disease. RHEUMATOID. Methotrexate. DMARDS. NSAIDS and more.

Seeing your child in pain, getting a diagnosis of a self limiting condition is not something you can ever prepare for.

As a family, my husband and I had gravitated towards homeopathy and both our children had pretty much grown up to 12 and 10 years without even a single dose of Paracetamol. Friends when their children came over for sleepovers would have to send their emergency drugs along. The ground work on leaning on treatment protocols that addressed the core issues and not managed symptoms had already been laid by our homeopath and our general resistance to OTC medication.

And now here we were confronted with what seemed like a pretty devastating extreme choice of cancer drugs which would anyway not really even “cure” and in addition plausibly come with a zillion side effects as google pages will tell you.

But somewhere over the fuzz quite instantly a strong instinct brought clarity. Without needing to articulate it for both of us,  we agreed and affirmed that the proposed treatment by the reputed and kind rheumatologist sounded counter-intuitive , so we will find a more equanimous path. We both agreed that Methotrexate injections was at least not the first path we would take and confident we will come to a more acceptable alternative. We talked to friends, family and searched extensively online.

Our homeopath who had helped our kids stay off allopathy all these years was in the States visiting his daughter. Ayurveda from many sources was definitely seen best suited to address our immediate need. Meanwhile Anand found Rachna’s blog and shared it with me. We agreed we must try and get an appointment with her and I shot off a mail to her as we flew to Cochin.

March 27th, 2017

The Ayurvedic doctor in the small hamlet in Kerala was kind and reassuring. But the oil treatments, the heat, just something about it all just did not vibe with our daughter and she rejected it with her whole being, literally wanting to escape it or be rescued.

Enter Rachna Chhachhi:

Meanwhile Rachna replied to our email and we secured an appointment to meet her. Her affirmation on holistic healing, self assured engagement, empathetic energy and clear articulation of “disease reversal” versus “ disease management” gave us immediate confidence that she could be the right person to help us. That she had herself experienced and reversed her own autoimmune disease was enough data at that point to cement our interest in meeting her.  So we cut short our trip and flew back to Mumbai, still anxious, yet hopeful.

March 30th, 2017

When we met Rachna, our first impression was of a radiant and warm person who understood. She spoke to our daughter directly and formed a connection.She communicated with a poise and unflappable conviction that gave us all immediate comfort.

Rachna’s holistic healing framework involved at its core a drastic reset of our daughter’s diet.

From a 13 year old’s point of view, to put it mildly, highly restrictive and frustrating. No pepperoni pizza? No milk? No cheese? No dosas? No ice cream? No cold drinks? No prawns? In our so far south indian vegetarian home – no sour and no lentils? Ahem – basically that ruled out most things in our diet.

Instead turmeric and garlic and salads and olive oil and raw nuts and oily fish… which for my foodie daughter was in her words “a devastating change in her life”.   

We left armed with a Diet framework, a list of nutritional supplements to compensate for nutrients lacking in her body and a strong routine of yoga stretches and pranayama. Sage advice also on listening to the patient first when it came to how much rest she needed which would be plenty.

Rachna helped further with a weekly food plan and even some recipes thrown in to navigate the new diet.

As we left Bandra and drove home quietly reflecting, It had only been a week since our diagnosis but we felt confident that our daughters care was in the right hands.

A year on:

It is by no means easy. We have grown in our repertoire of recipes immensely to satisfy a curious teen palate, with huge creativity and support. It takes a village to raise a child goes the saying and we have had lots of help from many quarters.

The result:

  • Her autoimmune readings are down by half
  • Her inflammation counts are all down by half
  • Her vitamins status and immunity is up
  • The flare ups experienced in the last six months are petering out and intensity is reducing
  • We almost always clearly linked to a trigger – exhaustion, anxiety or travel
  • The conventional toxic mediations like methotrexate are now far, far away from our vision of treatment choice due to the results of holistic healing

Of course she cheats from time to time, has cravings for foods she isn’t allowed, is still not fully committing to pranayama… but mostly does an incredible job of following through.

When a child goes through this experience it is almost impossible to fully understand what it feels like. Physically and emotionally living with a diagnosis that has life long implications definitely impacts how one processes their life, their world. From everyday life (snack time in school, birthday parties, inability to stay up late at sleepovers) to concerns about coping, a vulnerability creeps in and as parents of a confident smart teen, this is the most challenging. To help the child navigate through this and rise like a phoenix triumphant over the disease, in control of its impact; to go on and chase her dreams “in spite of” and watch her succeed. We stumble often but when I step back and see the tenacity and resolve my daughter demonstrates, I can only admire and learn.

With Rachna to guide, coach, steer, admonish (she does that often, to our benefit) and understand our daughter and us, we remain resolute, patient and positive of a robust life for our daughter.

As Pop singer Katy Perry tells us … “I won’t just survive, you will see me thrive!”

— Shalini, proud mother