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Our Daughter's Return

February 22, 2016

Healing

It couldn't be this simple. Story after story of children lost in this illness after years of treatments, it couldn't be this simple for us. Kids spiraling out of control, downward in to a hell made of their own minds. Painful IVIG treatments providing brief glimpses of healing only to have symptoms return and snatch children away again and again. Test after tests that uncovered nothing or everything. Parents forced to quit their jobs because their children could not be left alone, could not function at school, and had no one to help them. Families isolated from the lives they once knew because children were too sick or too afraid to leave their homes, as terrifying anxiety and OCD gripped their young minds. Children, having had every treatment available, being admitted to psychiatric hospitals because they can no longer be cared for at home. And yet, here we were just weeks in to treatment, seeing almost a complete turnaround. Three supplements. Could three supplements really relieve almost all of our sensory symptoms? Tame the agitation? Restore calm? Bring the gift of peace to this child's mind, body, and home?

Dr. O was complete in her assessment, reviewing every medical detail of my pregnancy and the birth of our daughter. Explaining that the antibiotics I took during my pregnancy would have affected the flora in my daughter's gut, as would the antibiotics given to me during delivery, and all the courses she had as an infant for the many infections caught at daycare. "She will have a strong immune system." people consoled when every six weeks a new cold turned in to yet another raging sinus or ear infection. Oh how I wish that could have been, but in reality the opposite was true. For whatever reason, perhaps a predisposition from the beginning, our baby was not bolstered by all the illness but weakened by it. The antibiotics only served to complicate existing gut and immunity vulnerabilities.

Perhaps a flu shot at a time when our preschooler was sick and her immune system compromised, could have been the weight that tipped the scale. Maybe there was just one infection too many or a badly timed virus. That high fever she had at age three or four, followed by a rash and eventually peeling hands and feet could have been a case of undiagnosed strep. We will likely never know, but somewhere along the line things went wrong, the immune system was damaged, and illness set in, slowly building toxins in her system and causing inflammation in the brain.

Dr O ordered more blood work than I could have imagined. She drew the blood herself, softly reassuring my daughter (and me) that it would be over soon. As I held a pleading, scared child on my lap I wanted nothing more than to take the pain and fear away. It hurt. It took a long time and even longer when the first vein collapsed and the other arm had to be had. Two hours after we had arrived we departed with more information, some good theories of what was going on, and a very traumatized little girl.

I want her to remember the beautiful dogs that played with her, licking her face until she giggled out loud. I want her to remember the artwork she was asked to create to hang on the wall of fame. I want my daughter to remember the amazingly smart and kind doctor who understood exactly what we were going through because she had walked her son through the darkness of this illness when he was stricken years earlier. I want to erase the blood from her memory but I can only keep the other  memories alive by remembering with her, the day we found someone who could help.

Our parting gifts looked simple enough; a therapeutic grade detoxification probiotic, yeast supplement called Saccharomyces Boulardii, and a bottle of Lysine which can be found in any pharmacy. Continue with her regular vitamins, the magnesium drink, and the Epson salt baths we had been doing for months. We packed up our bag, scooped up our daughter, and drove the 2-hour ride home with an exhausted little one in her car seat, wrapped in a blanket, clutching the bandaged places on her arms where she hurt. A light dinner, a few new supplements, and our babe was tucked snuggly in to bed.

Relief and Return

That evening, around 11:00 PM I heard the whisper alarm, "SHE'S UP!". My husband and I had perfected this quiet alarm over the last two years because it gave us our only shot at getting our child back to sleep within a reasonable time, which for her was still 30-40 minutes. This alarm said that Amelia was not just stirring but up and on the move. One wrong sound or the slightest stimulation meant she could be awake for HOURS. My body knows this whisper alarm and I snapped in to action before I was even consciously aware. I turned off the lights closest to me while my husband hit the kitchen switches and the moved quickly to our daughter's side because he was closest. But then something completely unexpected happened.

Instead of running to her bedside to quiet her before she started yelling for me and waking her sister, my husband met her at the bedroom door as she walked sleepily past him. He froze and with her eyes half closed she made her way to the bathroom, did what needed to be done, and walked back to her bed where she got in bed, pulled up the covers and went immediately back to sleep. That hadn't happened in years. The day's exhaustion is probably what enabled her to sleep so well but nothing could explain what happened the next morning.

Real treatment would begin once test results were in, but in the meantime we knew we might see some changes as we started to boost her system the few supplements I mentioned above. It felt good to be able to do something, finally. We woke up that morning and got what we never expected, not in a million years. So much of a change that I was convinced it couldn't be from the supplements we had given her only 12 hours prior. As suddenly as symptoms had come and gone for years, these supplements worked in taking almost all of them away. THE. VERY. NEXT. DAY. AFTER. our appointment and her first supplements my daughter returned to me.

It has been a month since then and except for a few days when symptoms returned for reasons we now understand, there has been no clothing sensory, no signs of that fleeting OCD, and the agitation and emotional lability is all but gone. The remaining symptoms are mild. Still waking a few times a week our daughter can usually fall back to sleep and sleep until morning. A small degree of sensitivity about certain pieces of clothing remain but they are managed independently and not a problem anymore.

It has been a month and we sailed past another milestone today. We ended a ten-day break from school, winter vacation, with a beautiful return to our typical morning routine. For the last year and a half, return to school days were guaranteed to bring epic meltdowns from Monday straight through to Friday, even more intense than the usual. This  morning was different. My daughter had a nice breakfast, chatted with me, got dressed, played nicely with her sister, and happily skipped out to the bus. I am stunned but starting to believe.

We are, at least at this point in time, one of the lucky ones. I am incredibly grateful that we didn't have to spiral down as far as so many suffering children have, and just as grateful that the first little treatment we tried has worked so miraculously. We meet with Dr. O tomorrow to review all those tests she ran and I am curious to see what they show and what other therapies or treatments she will recommend.  We may have a long road ahead of us but what we have now is hope and direction and that is enough for now.  And so we hold breath in anticipation of what is to come.

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