It has been incredible to see the support that Theo has gotten from around the Globe as we have shared his story on Instagram and social. We feel the prayers and the difference that they are making in Theo's life, and in our life. For that we want to say, Thank you.
My wish is that every special needs parent in the world felt as uplifted and loved as much as we do.
Last week when Theo was in the worst shape that we have ever experienced, we felt desperate. Theo was waking up in the middle of the night screaming in pain. We went into his room and he was punching himself with both fists and scratching himself until he bled. He would have episodes like this throughout his days since the car accident, and it was only getting worse. We couldn't figure out what was wrong. Theo's doctors and therapists were just as puzzled as we were.
We assumed that he was still hurting from the car accident, but we didn't know where he hurt because he couldn't tell us. We were giving him CBD, ibuprofen, and anything else we could to help him feel better. He has been seeing his chiropractor a few times a week and yet he was still in tons of pain. After a few weeks of this, we couldn't take it anymore.
Thursday morning he woke up again screaming his head off and punching himself. Angela made the decision that she was going to take him to the ER. I told her that I didn't want her to do that because they were just going to just send her away. Theo has PANDAS which is the overgrowth of strep in his body. Sometimes it is hard to know where he is hurting. But this pain was different. Angela thought that his gut was hurting because he would always be hunched over and it was just her Motherly intuition.
Angela arrived at Primary Children's Hospital around 5 am. She told the doctor what was going on and he said that his stomach wasn't hard and Theo wouldn't be able to walk if he had any type of bowel impaction. He basically dismissed Angela's intuition of some type of bowel obstruction. Angela told them that they were not leaving until they found out what was wrong with Theo. This is why Theo's doctors call Angela a "Tiger Mom". She is Theo's best advocate. They tried to send us away with Miralax many times without running any types of scans. At one point, Angela was sitting on the ground with Theo and holding his arms with her hands and pinning down his legs with her legs to avoid him from harming himself. The ER doctor asked her if she had ever thought of Behavioral Therapy. Angela gave him a not so friendly response with "Are you kidding me, he has behavioral therapy everyday, this is not behavioral." I am glad I wasn't there for that exchange. We got on the phone with 2 of Theo's doctors and they agreed to consult with the ER docs.
Finally the Director of the ED of Primary Children's agreed to run an ultrasound scan to see if he could see anything. They found that he had a significant amount of stool stuck in his small intestine. They gave him a couple of enema's but they didn't help at all. Again they tried to send us away with Miralax but we had used Magnesium Citrate and other gut clearing medications. We were not going to go home until Theo felt better.
Finally they agreed to admit us and run a medicine called Go Lightly through a nasal drip over night. Theo did not love this. He hated it in fact. He pulled the nasal tube out a few times and they said they gave him a break in the middle of the night because he kept just fighting. He was screaming his head off while 4 techs and nurses held him down. I had tried to help for a minute but they told me to take a walk. I eventually went back to the room and passed out at 1 am.
I woke up around 6 am and the nurses said that he had finally started passing some of the stool. The 3rd diaper weighed 3.5 pounds with stool and he had a blow out on the bed. He had about 3-4 more diapers after that. I could feel the energy in the room was much different. Theo's energy was different, his whole body was more relaxed.
When we were admitted I had a consult with 2 doctors where they wanted a full history of Theo's diagnosis and his treatment protocol and support that he was getting. After the procedure there were 4 different doctors that came into the room to consult further. Every one of them was super interested to know more about the Fecal Microbiota Transplant that we did in July of 2020. One doctor said "I just don't understand how this would impact and be helpful." I told her that well if you read in Brain Maker by Dr. David PerlMutter that our immune system is housed in our gut. He has a whole chapter dedicated to FMT procedures and the wonders that they are doing for kids with special needs.
PANDAS is a chronic illness. They call it an auto-immune illness. Basically the body starts attacking itself. The FMT was a total gut reset. We saw huge improvements from it up until the car accident. Theo's body was thrown back into a stress response from the car accident. When your body is in a stress response, the digestive system stops working properly. The digestive system is part of the Parasympathetic Nervous system, the Rest and Restore processes. When your body is in a Flight and Fight response the Parasympathetic system shuts down.
It was really bizarre to share this information with a team of doctors at the biggest regional hospital in our area. The ED team told us that they didn't feel comfortable treating PANDAS, which is a new psychiatric diagnosis. We have since searched the country for PANDAS specialists. We have found some in Kansas City, Missouri; Cleveland, Ohio; Dallas, Texas; Phoenix, Arizona; and San Diego, California. The initial consultation is anywhere from $150 to $999 just to see if they are a good fit. The treatment plans range from $150/visit to $10,000 for a 10 month protocol. Every one of the doctors says that it takes about 12-14 months to really see an impact for PANDAS kids.
It is crazy to think that our allopathic medical structure in our country knows very little about this chronic illness. We have had hundreds of families from across the globe share their similar experiences with us.
Since Theo cleared his small intestine we have had our sweet, happy boy return to us. He is back to running and jumping around. We just found him in his room trying to put his bed mattress on its side so he could climb on top of it and jump off.
PANDAS is a riddle. It is a puzzle we are trying to figure out. Since the procedure we have had notes back from Theo's school that he has had great days. That it is great to see him run to his teachers to give them big hugs and to be happy again. PANDAS flares are awful. We hope to continue to help our son heal from chronic illness. We are so grateful for Naturopathic Medicine and for the Functional Medicine Matrix and Model. They provide us hope and guidance for our future.
Again thank you for your prayers. They are helping. Keep them coming.