“But when the multitudes knew it, they followed Him; and He received them and spoke to them about the kingdom of God, and healed those who had need of healing.” (Luke 9:11)
My eyes are filled with tears as I write this blog entry (tears of joy, peace and relief). After eight months of waiting, we were finally able to take Carson to see Dr. Arthur Krisgman (Arthur Krigsman, MD, is a pediatrician and gastroenterologist specializing in children with autism and gut related disorders). I have been aching to see this doctor. He is out of network with our insurance so we decided to try the doctors in our area that were covered with the promise (from Nathan) that if I was not satisfied with the treatment plan offered, we would bite the bullet and head to Austin. When the last specialist suggested that we give him "more supplements and vary his diet to get the gut adjusted" I knew we were on our way to Austin :) Bottom line: I MUST trust and agree with the physician leading the path. We have heard the doubts from the multitude of doctors Carson has seen, "I just don't know what the problem is. This is beyond me, and I can't even point you in the right direction. You just need to accept this and start embracing your journey." Anyone who knows me know that I am not going to sit back and "embrace this" - I am a fighter! If we won't fight for him, who will?
Our "village" of prayer warriors is strong and dedicated. Many have known the importance of this appointment, and wow, did we feel like we were being carried through this process! I have had so much peace in my heart about going to see Dr. K. Don't get me wrong - it was long and exhausting and difficult, but when you know it's right, you just know. Thank you for all of your prayers and support. I cannot express how much it means to our family. Each prayer was felt. We all talk about God's timing and how He always sees things from a different vantage point, but let me point out a few "wow moments:"
- Nathan just started working in Austin with his Whole Foods client a week ago. Hmm, interesting that he just happened to be in Austin so he could be at the appointment. Dr. K is only in Austin once a month (his primary office is in NY). It was a miracle we were able to get a slot in April.
- We were able to stay as a family in Nathan's hotel and spare the expense of a room.
- Rachel (one of my best friends) lives in Austin and was able to spend the morning with us. Carson had two playmates and we were able to get out and have fun instead of stay in a hotel all day long.
- My mom and dad were able to come and stay with Alex the entire time we were gone. They took her to school and handled all of the details so I didn't have to stress.
Sorry, I digress, but there is a lot to share and celebrate.
We waited in the waiting room for over an hour to see Dr. K. Carson didn't fall asleep until 11:00pm the night before and had no nap the day of appointment because of the timing (3:30pm). So you can imagine he was a mess by 4:30. Thank goodness Nathan was with me. I could NOT have done this without him. While we were waiting, Dr. K peeked out and said hello to our family. I just KNEW we had finally found our man. We visited with a family in the waiting room and the father was a physician. It gave us comfort to know that a physician chose Dr. K to treat his own child. The entire staff was so accommodating and friendly. It felt good to be "home."
Dr. Krigsman sat us down and said, "I have all of his labs and tests right here. Even though I believe I have a diagnosis for him, I want to start from day one and hear everything that has brought you to this day. I trust moms more than any lab result. I am going to push you and make you uncomfortable, but we will create Carson's story today." He had an incredible bedside manner. I had read some interesting things about him to say the least but it didn't change my mind about him and I am so glad it didn't.
After we went through his entire history and looked at the labs he explained that based on the symptoms, it seems that Carson has two disorders/diseases: Eosinophilic Esophagitis (EE) and Autism Enterocolitis. What does that mean?
1. EE is an autoimmune disease. This disease causes his gut immune system to turn on itself and attack the lining of the gut. The biggest question I had for Dr. K was finally answered. Carson has a very high IgE level but tested negative for the typical food allergies (his IgA and IgG levels have normalized) - so it's puzzling to see an elevated IgE reading. Dr. K explained that he has a large number of eosinophils in his esophagus caused by elevated white blood cells attacking the wrong tissue. Bottom line: he gets sick so easily because his army is attacking the wrong enemy. Instead of fighting colds, it is attacking his gut lining. Not only is it attacking the wrong enemy, it is creating holes and gaps along his entire intestinal lining. This causes the intestines to swell and creates a very inflammed gut (this is why he looks pregnant). EE is fairly rare and there isn't much published on the disease. He was not born with EE. There was a trigger that caused it. The cause is unknown.
2. Autism Enterocolitis is a GI disease that damages the large and small intestines. These digestive issues could exist in up to 50% of children with Autism. The link between enterocolitis and autism is too large to ignore. The enterocolitis interferes with proper absorption of food and causes the bowels to create irregular stool. We know this is a fact. :)
Needless to say, I was excited to hear that Dr. K believes that there is an undeniable link between these GI issues and autism. I have always believed that his gut issues have contributed or created the ASD (Autism Spectrum Disorder).
What happens now? On June 21, we are scheduled to go back to Austin for Carson to have a Colonoscopy, Upper Endoscopy and a Wireless Capsule Endoscopy performed. The doctor will use The Wireless Capsule Endoscopy "pill cam" which is a non-invasive method for imaging the entirety of the small intestine. How cool is that? He is going to study every single inch of his GI tract!
His diagnosis of EE and A
utism Enterocolitis are speculation at this point based on Carson's symptoms. He said it is crucial to visually study the damage in the intestines in order to treat his condition properly. He may have more diseases, he may have less. If his current diagnosis is correct, Carson will be given Prednisone. Prednisone is a steroid that reduces inflammation. Seriously?! A PILL?! No cutting, no major surgery...um, that's amazing! I am surprised that he has more than one disorder. Thankfully, I am very pleased with the treatment plan.
He said that he will be able to "heal his gut" over time and that Carson should even be able to eat regular foods again someday (with the exception of gluten). He made it very clear that even if the gut is healed, the autism may still be present. He could make no guarantees about the ASD. He simply said, "I've seen autism completely vanish when the gut is healed and I've seen the gut heal but the autism remain present. We won't know about Carson until we treat him."
The most encouraging thing he said to us was, "Carson is a textbook autism GI pediatric patient. His timeline and story is the same as hundreds of children that I treat. There is one huge exception - HIS AGE. Carson is a dream! Parents do not typically come to me until 6-13 years of age and by then, the damage is substantial. The longer the body is distressed, the harder it is to correct. I am honored and excited to get to treat Carson. His age gives him a huge advantage. Way to go Mom and Dad for being proactive and fighting for him. You are changing his life forever." Nathan and I high fived each other. What an amazing thing to hear.
Please start praying for June 21 now. I have to be realistic and know that the ASD may not ever be cured, but I do finally have hope that his gut can be healed. I am a very hopeful Mommy. I DO believe he will be cured completely. Call me crazy, but I just know it!
"I sought the Lord, and he answered me, and delivered me from all my fears." (Psalm 34:4)
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