By guest blogger Chelsi Coate – long time TACA mom and volunteer
Christian is 11 and going into the fifth grade. He is kind, funny, sarcastic and charming. He loves anything that has to do with film making. He plans on attending his second film festival this year. He is also very skilled at computer programming and can whip up websites in no time at all.
Christian also has autism. He has come so far since his diagnosis in July of 2005.
I want to share something that we recently experienced that was very shocking and traumatic for our family. Actually it was life threatening; the scariest event I have witnessed as a parent. I hope by doing so, we might be able to help other families that could potentially go through the same thing.
On Christian’s 11th birthday, a Friday, he started complaining of neck pain. For the next couple days he was throwing up and that led to excruciating headaches. Any light or sound caused him so much pain. He wore sunglasses inside and we had to turn off anything in the house that made sound. He could barely walk and he was extremely disoriented. We thought he was suffering from a very bad cold or virus.
Monday morning I decided to take him to the doctor’s office. They also believed that he either had the stomach flu or a migraine. We had some blood work done and the doctor said that if he was feeling worse in the morning to call. The next morning none of his symptoms had subsided. I called the doctor’s office that morning and we were told to head up to our local children’s hospital to rule out “aseptic viral meningitis”. We drove to the hospital and wheeled him into the Emergency Room. As he was taken back to triage, we started to notice that he was slurring his words and mixing his sounds up. The first doctor to see him wanted a CT scan done immediately. The doctor came back and asked me to step into the hallway. He told me that there were some abnormalities found. He took the image and put it up on the light board and I could clearly see that there was a huge part of his brain that was a different color. “It seems that your son had a stroke on the left side of his brain”.
Arterial Ischemic Stroke- Middle Cerebral Artery- Left Acute.
When your son has a stroke, all of a sudden everyone around you moves a little more quickly. In my vision everything went into slow motion and I felt helpless in helping my son.
Christian was taken up to get an MRI to get a clearer picture of what was happening. When those results came back, it confirmed what we were already told. A neurologist met with us to go over the timeline of the event. Something I never knew was that strokes are actually about 7-10 days long. They are like a mountain. They start out low and slow and then the swelling peaks and then everything starts to go down and recovery begins.
Thinking back 7-10 days, we remembered that on Wednesday his two therapists had mentioned that something was off with his speech. Then the neck pain started two days later…and so on.
Ok. So we know he had a stroke. So now what? They wanted to admit him to monitor overnight. The doctor started to explain to us what part of the brain was affected and the type of things that Christian would struggle with from now on. Everything she described that he would struggle with were things that he had struggled with his entire life that I always assumed was because of his autism. Could there have already been damage to that part of the brain before the stroke?
Two days later, Christian was recovering really well and wasn’t showing any signs of further complications so we were getting ready to get discharged. While he was lying in bed and I was making some phone calls to get therapy started up at home it was like his light switched off. His eyes went dull and he started slurring his words terribly. I kicked into high gear and started scrambling to get a doctor immediately. When they saw him, he was rushed down for an urgent CT scan to see if the stroke had progressed or if he had a brain bleed. We got back up to his room and waited for the results. It showed that nothing had changed. The same second we got those results, I looked down and Christian started shaking uncontrollably. It all happened so fast. He was having a grand mal seizure. Christian had never had a seizure before in his life. He was given something to stop the seizure and was rushed up to the ICU (again.)
The next morning he was stable and looking much better. Everyone was telling us that seizures after a stroke are common and as long as he was stable we could go home that night.
The neurologist on call decided he wanted to do an EEG on Christian that day, just to make sure that nothing else was brewing. If everything looked good, then we could be discharged (again!)
We received the EEG results and were told that he was basically having subclinical seizures all day and night. He was hooked up to the EEG machine for 6 days as they tried to get the right seizure medication, timing and dosage. At this point we had been at the hospital for a week working towards the goal of stopping the ongoing seizures.
Finally, we were feeling pretty good about the medication regimen that he was on. We weren’t seeing any breakthrough seizures so we were confident about going home. I was focused on Christian’s well being. But this entire experience shook me to my core. How could this happen to a healthy kid?
After 6 days, there was a shift change with doctors and the new neurologist on call decided that she wanted to take a different approach and put a stop to his subclinical seizures all together. She wanted to stop one of his two seizure medications and replace it with a new one. He would have one large dose of this new medication and then continue with maintenance doses. She was confident that it would stop the seizures completely.
Immediately after he received this new medication through his IV, he had an extremely adverse reaction. He was hallucinating, throwing up, experiencing nystagmus, he lost feeling in his hands and feet and was completely disoriented with paranoid thoughts. This set us back another four days as it took that long to get the medication out of his system enough to not have any more side effects. After our persistence, we went back to our original neurologist’s approach and continued on with our first seizure medication regimen. It is incredibly scary to see medication have such a negative adverse affect and still not work on my son!
We’ve been home from the hospital for about four weeks now. Christian has physical, speech and occupational therapies once a week. He has a hematologist, cardiologist, neurologist, stroke specialist and neuro-psychologist. We have had dozens of tests, blood work, and repeat MRI’s to try and figure out why this happened and what we can do to prevent it from happening again. All the results are still trickling in and we’re still trying to put all the pieces together.
We recently discovered that Christian has two blood clotting markers that could have played a role in the stroke. He has elevated Lipoprotein A and elevated Factor V Leiden. These will be monitored by his hematologist. The experts have shared that individuals with these elevated markers could be at risk for strokes and other serious issues.
Christian is almost back to his normal self. There are some gaps in his cognitive skills and physically, he needs to build back up some strength and endurance, but considering the magnitude of what he went through, he is doing amazing.
I share this story to encourage parents to trust their instincts. If this could happen to my family, it could happen to anyone. Parents should never discount symptoms especially regression or medical symptoms similar to what my son experienced. I encourage families to seek urgent medical attention for any family member including a child with autism. Like with autism, the earlier the intervention is received, the better the results.
We are still at the beginning of this new recovery journey and as we learn more, we’ll share more. Feel free to follow Christian’s journey on Facebook under “Christian David Coate Fan Page” or message me on Facebook under “Chelsi Dailey”.
Love and good health, #TeamCoate
Lisa, thank you so much for sharing this experience as it’s one of the last things I would expect at this point (but not sure why!). So thankful Christian is doing better and also very thankful to you for continuing to help the autism community/family!
Our prayers are with you, that was a very scary event in your life and that of your son. We too had something similar happen when our son was 8. What our doctor shared was that since our son could not share his symptoms and worries he was very much at risk for more events. He also could not tell us he would be ok. Today our son is 29, he still has problems, is on 4 seizure medications, and he is still very allergic to foods that set off the seizures. You might want to look into that also. Good luck and I hope Christian continues to do well and improve. It is good to get your story out there and hopefully it can help another family. We too had no clue, just that our son was sick, and not feeling well. Thank you! Annele
Thank you for sharing this. I wish you and your son all the best luck in recovering from this.
This incident highlights something which is not commonly appreciated which is that in a large number of cases autism is a vascular disease. Here is some research on this topic: http://www.hriptc.org/pdfs/Autism%20Isoprostane%20Article%20-%20Dr%5B1%5D.%20Walsh.pdf .
I hope that in the future research funding will be directed toward studying the biochemistry that causes these vascular issues and how to address them.
Hi I’m delving into the autism stroke connection. My son is 9 –similarly high functioning–just diagnosed with subcortical stroke right brain, affecting left side motor skills. OT and PT in progress but we’re looking for answers and how to prevent a reoccurrence. Any resources you’d recommend being over a year out?