I've never liked the way it ended, this blog. It stopped in the middle of the story. I didn't know if we'd ever reach the end. I wanted to know, to believe that there was an end. B told me I should write on his blog again so I can help other kids. So, here it goes:
Today is Sunday. A normal Sunday...except it isn't, compared to almost five years of Sundays passed. B sat in the church service with us. His body was quiet. His attention was focused. I praised God silently as I watched him take communion. It is amazing what God has done for B, for our family in just a year.
Rewind to the night before our first appointment at Dr. Buttar's clinic. B wanted to try out the huge bathtub in our hotel room. I helped him get the water just right as he undressed. Every one of his ribs showed. His knee joints looked huge on those spindly legs. He had no muscle tone. I remember drawing in my breath and trying not to stress out. Dr. Buttar had to get to the bottom of his inability to gain weight and his propensity to lose weight during every flare. No matter how much organic, full fat food he ate, nothing would stick. He was later diagnosed with a metabolic disorder. Today, he is almost 10 lbs heavier and his muscles are developing. He looks so much better. We are getting his metabolic system under control.
As we drove to Dr. Buttar's clinic for B's first in office treatment, I broke down. There was so much hope riding on this and quite frankly, I was scared. I held B down for all his vaccines when he was younger. I can't even drive by the pediatric clinic without my heart beating faster and guilt washing over me. I try very hard not to relive those days. The thought of B having an IV treatment terrified me. I think a good amount of PTSD was involved and I couldn't stop the tears. My fears were allayed in the months that followed. Tremendous progress. Every two months B has a treatment. We measure his progress through a series of questions that are then translated to a line graph. The progress we see in him every day does translate well to the graph. From worry to elation. His labs are looking great. He is feeling great. In fact, he is doing so well and his labs are looking so good, he may only have one treatment left. We are staring the end of the story in the face.
So what about the food allergies? Guess who ate real cheese on his pizza last night? Guess who gets to eat at restaurants without bringing his own 'special' food? Guess who ate his Valentine's candy this year? Not the healthiest choice, not an everyday thing, but his body handled it well. He still reacts to gluten. Peanuts and cashews are out, of course. Apples and oranges are still iffy. But that is only a handful of foods, not 43.
What about all the PANDAS/PANS symptoms? PANS caused inflammation in B's brain that resulted in symptoms of autism and Tourettes Syndrome. Most of those symptoms are completely gone. The inflammation is under control. He still has a few minor, residual tics that are mostly apparent to us, his family. Nothing like the full body and vocal tics that were rapidly progressing before treatment.
A few days before I started this blog (four years ago!), we went back to my home town for a graduation. B's behavior was erratic. I could feel the stares of people thinking I couldn't control my child. We spent the day with extended family. He ignored them, didn't talk to them, wouldn't hug them. I wanted so badly for them to look beyond his struggles and see his sweet, tender heart. That is why I started this blog. I wanted people to understand him. Today, if you wait for his reply, you will glimpse that gentle nature. He is full of hugs for his family.
Dr. Buttar said our next step is focusing on realizing we have a healthy child. It's hard when you've put so much into healing, when your momentum has been so strong for so long. B has had a few little flares that have made me doubt. However, he bounced back to an even better baseline whereas before this treatment, his new baseline got worse with each flare. Dr. Buttar seems to think that B's body will take over and know how to keep healing with all his other body systems working well. I believe him because that is what we are seeing. The black cloud that has hung over our heads has drifted away, making room for the sun.
I have learned so much from this journey. Anger, pain, confusion, frustration...they are all part of it. If you are in the thick of it now, don't feel bad for feeling those things. However, do not dwell there. Don't pretend everything is okay, but do not immerse yourself in the sorrow. I used to visit PANDAS/PANS pages and read with horror about children who lost the ability to speak at the age of 15, children who tried to commit suicide, children who lost the ability to walk, children who had to be admitted into psychiatric facilities. My mind would drift to the 'what ifs.' I wish my present self could talk to my past self. I would look myself in the eyes and say, "They are not your child. He is in front of you and he needs you to stay positive for him. It will get better."
Always, I am amazed at God's guidance. The only way I can describe B's journey is 'full of miracles.' Every door God opened, every door He closed. His goodness... B has been granted a brand new healthy life. God Bless Dr. Buttar, Nurse Practitioner Jane Garcia, and of course the physician who initially diagnosed and treated him, Dr. Baptist.
I will always thank the Lord. I will never stop praising Him. -Psalm 34:1
Chicken Schwarma + Coconut Basmati + Cucumber Salad + Cauliflower Chickpea Curry - Here's a meal that you cannot forget. You know the ones... they stick with you. The smells, the textures, the memories. It has all the qualities of warmth...
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