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Thursday, May 11, 2017

Ocean of Love



Our kiddos can be pretty angry. Irritability is the norm, always has been. Our babies were impossible to soothe, everything made them feel on edge. They have never been good sleepers. We walk on egg shells, never knowing what will set off a bout of anger. When the school bus shows up in the afternoon, I know for certain there will be hours of meltdowns ahead. The kids hold all their “stuff” in all day long, and home is their safe place. The place they know they are unconditionally adored. The place they know they can let it all out, the good, the bad, and the really angry, and they will still be loved. 


We have a lot of anger living with us. Sometimes, as my children are falling apart after school, they will say they had a really good day. As they cry and fight, they will tell me they wish they could feel happy, but they can’t and they don’t know why. They will weep and pick fights and say mean things, and in the same breath beg for my help because they don’t know how to calm down. It’s tough being the Mama that everyone needs help from. Especially when you’re not quite sure what the underlying problem is.


Now we have more answers. Now we know it’s not Bipolar Disorder, it’s PANDAS. 


PANDAS is an inflammation of the nervous system, caused by strep. PANDAS has been living with us for many years, hiding in plain sight. PANDAS can cause Bipolar symptoms. Inflammation in the brain can make a poor kiddo feel like raging for no reason. Inflammation can set off a volcano of a reaction, when in reality the trigger was small and innocuous.



Having lived with these types of symptoms since our babies were tiny, we’re used to thinking eight steps ahead, trying to make sure that nothing will set off a rage. But sometimes life happens. Sometimes you can’t always control everything in your child’s environment. Sometimes, especially when you have four kiddos who react the same way to triggers, life can be unpredictable and overwhelming. We prefer to stay home, not to go on big excursions. Big excursions bring unpredictability: meals aren’t at the right time, fatigue sets in, sitting in a cramped van with your siblings makes you feel irritated, your shoes might not be tied tight enough, the sun might be too bright or the clouds might be too cloudy, there are too many people, there aren’t enough potty stops, you might feel too hot or too cold, there is too much unknown…all these factors can set off a rage. It’s tough to walk the line between total isolation and some life outside our comfort zone.





Our family has spent a lot of time in therapy. We’ve dealt with many issues over the years, among them being how to handle rages. The kids have learned techniques to stay calm, or become calm when they are angry. Some of the kids are on medications for stabilizing moods so that we can maintain a more even keel of emotion in our home. Despite our best efforts at teaching our family to be calmer, we still struggle with Anger. We have scars from the years of living with Anger- both emotional and physical. It has not been easy.




Life is definitely better, and less angry, than it was a few years ago. But Anger still wakes with us each morning. Anger still follows my kids home from school. Anger still takes a place at our dinner table every evening. Sometimes the first words out of my darling’s mouth in the morning go something like this: “I hate the spots on my ceiling.” (Mama isn’t a professional painter. Sometimes I leave a stray spot of wall paint on the ceiling. sorry.


You never know what will set my babies off. The routine of getting ready for school is fraught with danger. Danger of Anger intruding, and then not being able to reel my child in from the rage and make it to the bus stop in one piece. The afternoon routine of homework, therapies, and play time is also wobbly with the prospect of problems. And then there’s dinner time, bath time, bed time. Forget it. All one big blob of possible rages.



Now don’t get me wrong, I know all kids can be irritable. I know every human gets angry. I’m not talking about that “normal” level of emotion. If you have a child with Anger issues, you’ll know what I’m talking about. It goes beyond “normal.” It is unusual and atypical, unpredictable and persistent, all-encompassing. And a massive pain in the butt to deal with.




Once in a very great while we have a perfect, stellar, gift of a day. A day when the stars align in the heavens and all of my children are calm at the very same time, for more than three minutes. We may experience Anger, but at normal levels, not obscene levels that are typical for us. I can count one day so far this year when that has happened. Last year we had two days like that. I know the exact dates. No joke. Those days are quite an enormous blessing. I am always curious if that is what life is like with typically-developing kiddos. I am shocked and amazed when we have one of our Wonder Days, because I am blown away by the wonder of no walking on eggshells, no meltdowns, no arguing, no rages that take on a life of their own and destroy our day.



When you live with constant irritability and rage, you’re always on edge. You never know what will irritate a kiddo into a full-blown meltdown. You never know when it’s coming or how bad it will be. You don’t know how long it will take them to recover their peace. So you live on the precipice of fear every day, all day long. The fear sits in your stomach, making it churn, making you sweat. The fear burns out your adrenal glands, your thyroid. It gives you PTSD. It heightens your anxiety and drives away sleep. It makes you jumpy as hell.



BUT. Living with rage also makes you appreciate more than anything in the Universe those few and far between times when all is right with the world. When our family completes an activity together and there aren’t any rages or meltdowns, it’s monumental. And amazing. And so so wonderful. 


The kids are not in control of their Anger most of the time. Their little brains are on fire, so they can’t be held totally responsible for their actions or emotions. It would be like expecting them to be able to lower their own fever. Totally out of their control and impossible. They can not control their anger when we get to Raging Mode. I look in my raging child's eyes and know in my heart that they are helpless over what is happening to their bodies. No amount of therapy or medication or discipline makes any difference if your brain is inflamed and your body is out of control because you are ill.



I had a scene pop in my mind the other day of a dagger slashing through the ocean. At first I was like huh, no clue what that means. The more I pondered my vision, I realized the dagger is my children’s anger and the ocean is our family’s love. Sure, the dagger is dangerous, sharp, and horrifying. But our love, well, that’s an endless, bottomless ocean. Like a dagger through an ocean, the Anger that my children can’t control can slash through our family time after time, trying to rip and tear our love apart. But the anger can’t make a dent in this ocean of unconditional love. No matter what, our love will heal the spots the anger tried to demolish. Sure, we have some wounds. But the ocean of love we have for our children will envelope those scars like a soothing balm. No permanent damage will be done by the Dagger of Anger. Our Ocean of Love is too powerful.

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.