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Tuesday, May 9, 2017

PANDAS, MARCoNS, Lyme, Oh My!



A few years ago, we went with our Grandma and Grandpa to an event called Quarry Quest. A huge quarry is opened up and families can come and spend the day playing, exploring, participating in fun activities. One of the events was this huge pile of sand that kids could dig in to find jewels to take home. My kids ATE IT UP. This is one of their most favorite activities of all time: looking for buried treasure. In our garage, we have metal detectors, shovels to dig up treasure, sifters to shake out possible gold from a clump of mud…we’re serious about our treasure hunting here. There is a place in Door County, WI, where another set of our grandparents live, where kids can go to get a huge bag of dirt to sift through and find treasure. Every time we visit Nana and Papu, the kids beg to go there. The kids are also addicted to treasure-hunting shows on TV. Which frankly bore me to tears, but I do share their love of searching for the unexpected.


I was thinking this week that my kids and I have this in common, this obsession with finding treasure in the midst of mud. Only my treasure comes in the form of answers to the Mysteries Of My Children. 

We got more test results back for Ben and Jonah. I was astounded. I wanted to stand on my roof and scream at the top of my lungs with a bull horn that I knew it! I was right, that there is much more going on with the boys than other doctors have been able to find. Vindication! 

Alex said, “You know, you’re geeking out about this a little bit…” But he does understand that this has been my life’s mission for the past FOURTEEN years, to find all the puzzle pieces of the kids and pull them back into health. Finally, we’re getting somewhere.


Some of the things the boys have going on are making them very sick. They’re not contagious, but they are very ill. The boys have PANDAS, which is when strep attacks your nervous system, inflaming your brain and causing a host of symptoms. Pretty much every single symptom that is listed, my kids have. It can cause tics, anxiety, OCD, rage, learning disabilities, bedwetting…hello, have you met my four kiddos??


Another thing we’re facing is MARCoNS, which is an antibiotic-resistant staph infection that lives deep in the sinus cavity. Think MRSA in your nose. Ouch. It creates a biofilm around itself so it is difficult to kill. It can cause symptoms like fatigue, pain, fungal overgrowth, allergies, depression, headaches, sinus problems. Again, met my kids??


The doctor also told us that we’re dealing with low levels of carnitine. To explain it in an easy way, carnitine feeds your cells and gives you energy. If you have low levels of carnitine, you have low muscle tone, fatigue easily, and are basically a couch potato. Hm, sounds familiar… I gasped as the doctor said these are the kids whose parents put them in soccer, and as the pack of healthy kids runs around after the ball, the kid with low carnitine ponders the clouds, putzing around casually. JONAH!! That was Jonah at age 5! We put him in soccer, it was a bomb. Cloud gazing was all he was interested in.  The boys have tried every sport known to man, and nothing was a go. Now we know it's because they physically didn't have the energy in their cells to sustain athletic activity.

Low carnitine explains things like why my darlings have been known to have full-blown rages when I dared ask them to run upstairs and grab their socks from their rooms. The idea of having to move their bodies up and down the stairs is excruciating for them, because their cells don’t have enough energy to make it happen easily. (So we moved the socks and shoes downstairs. Easy fix.)



When I got off the phone with our doctor, I was just totally mind-blown. I KNEW there was so much more going on in the kids’ bodies. But do you know how hard it is to go against the people in society who you are supposed to respect, never question? Doctors, school personnel, people who you look up to. It is supremely difficult to listen to your Mama instincts and stick to your guns when facing a white-coated doctor who thinks you're bananas. Year after year after year. When people would say the kids just need tougher discipline. A good spanking. It’s a parenting issue, a home issue. The kids’ health is fine. I’m overreacting. 

It's infuriating to know that my children have been struggling and suffering with illness for so many years, and doctors kept telling me they were fine. NOT fine, as it turns out! Very far from fine! How much time have we wasted because our doctors couldn’t even think outside the box a teensy bit and have labs done that would show these infections were raging in my babies’ bodies? Why is it up to a parent to search completely on her own, in the shadows of the internet, gleaning any crumb of knowledge from friends who are walking the same path, in order to find answers? Infuriating. I mourn the loss of all that could have been for my babies. Where would they be now if I had been able to find them help 2, 5, or 10 years ago? So sad.

There are some who I will never convince of my children’s illnesses, despite blood, saliva, urine, neurotransmitter, and DNA testing. Despite scientific evidence, in black and white, some will never agree with me about my family’s health. They say it’s “not standard of care.” "Alternative" options sound scary.

alternative: (adjective) available as another possibility. one of two or more available possibilities. synonyms- option, choice.

The point is that I need an alternative to what the regular, standard-of-care world has done for my kids, because that hasn’t worked. This alternative is our choice. It is another option for treatment, and hopefully healing. My children are getting more and more ill and no "standard of care" person has any answers for me except: more Miralax (which is a terrible invention), psychotropic medication (with many negative side effects, possible long-term issues), stricter parenting, more spankings…Sorry. Not good enough for this Mama. When "standard of care" doesn't work, I look for alternatives. I'm fine with "alternative." Isn't it wonderful to live in a world with alternatives, options, choices?

It is insanely difficult to trust in your Mama Heart that you are right, you just haven’t found the people who can help you yet. When most of the world thinks you’re a lunatic, it’s hard to not begin to agree with them. My saving grace, my rock, has always been my soulmate. Alex grounds me, supports me, boosts me, carries me when I get stuck in the quicksand of overwhelm and can't fathom another step because it's so, so hard. If not for my husband, I wouldn't have been able to stay on this journey. He always reminds me that I'm right about the kids, I'm not crazy, I'm on the right path and that we will find healing for our family.

People ask me if we can cure all these illnesses, and the honest answer is that I don’t know. I do know we can put them into a type of remission. These are things that will probably always live inside my children, but if they have a clean diet and healthy lifestyle, stay mindful of their symptoms, and get treatment when symptoms flare, they can be happy and healthy their whole lives. Now that we know what we're dealing with, and have the right support system in place finally, we’re going to soar.


I have to focus on the positive, and it’s a GINORMOUS positive! We’re finally on the path to healing! We have a concrete treatment plan. We have support from great doctors. We know what to do to treat these illnesses, and there is hope for recovery.
Alex had such an amazing point about all this. He said that for all the diagnoses the kids have right now, there are actually no lab tests to prove they have these things. There is no definitive test for ADHD, Tourette Syndrome, anxiety, Bipolar…but if you flip those names off your tongue people don’t look at you like you’re from outer space. If you say PANDAS, MARCoNS, Lyme…wow, sometimes eyes glaze over and you get a look like you’re completely nuts. Pretty interesting.


There is no way we're alone in this journey, there must be other families like ours. Parents who are living with daily chaos and illness, fighting for answers and searching for help. Where are these other Mama’s? How do you find them? What do you Google to find other parents who are dealing with these same issues, who continue to struggle to find help for their kids despite the world saying they’re completely loony? 

The other night I found some of them. I found all these blogs by Mama’s who have kids like mine, and it was such a beautiful realization that I am truly not alone in this crazy struggle. So many things I research say that because the symptoms of the illnesses our kids have are so similar to things like Bipolar, or Tourette Syndrome, often the only way our unique children are able to heal is if they have parents who go to the ends of the Earth to find answers. Parents who are brave and courageous in the face of daunting challenges. Parents who don’t give up when it seems like the whole world has turned against them and everyone says they’re over-reacting or just need to spank their kids. There should be a yearly conference for parents like us, so we can find each other, and physically see that we are not alone in our journey.

This was so validating, to understand that I am not the only persistent, determined Mama out there, who knows there are more puzzle pieces to find. I'm honored to consider myself among those parents who are successfully finding help for their sick children. I've finally begun to find my bits of treasure in all the mud.

2 comments:

Becky Mccully said...

How were you able to get a diagnosis of PANDAS and MARCoNS? What kind of tests were required and what kind of doctor did you use? I've wondered if one of my kids might have PANDAS. And the carnitine is interesting, too. My kids are so tired a lot of the time.

Carrie said...

The test for MARCoNS is a nasal swab. Super easy and painless! For PANDAS, it's a blood test that looks for elevated levels of strep. The doctor takes these levels plus symptoms into consideration for a diagnosis of PANDAS. PANS is another diagnosis when a child does not have elevated levels of strep, but a different illness sets of neurological symptoms. To find out information about things like carnitine, we did saliva and urine tests. The doctor also checked for things like Epstein Barr, which can cause chronic fatigue. We see a doctor who does functional and integrative medicine. Hope this helps! It's not fun to have kiddos who don't feel well!