Long and Overdue Updates

I could have sworn I’ve posted an update more recently than March but apparently not! I’m guessing life and summertime got in the way of things! Things in our world of autism have been very busy and I can’t wait to tell you about it! 

In March of this year, we took Nolan to The Stem Cell Institute in Panama for his second round of stem cells. We went for the first time in August of 2023 and his awareness and speech grew so much it was a little unbelievable! On this second trip, we took Harper with us and even ventured out and did some sightseeing. Everything went well except for a few hiccups with travel and delays at the airport. It’s been a little over six months since the last treatment and I can confidently say that we’ve continued to see progress! Nolan’s speech has continued to grow and he is engaging more with the world around him! He’s always had problems with digestive issues and we haven’t had those anymore! That alone is worth it all! 

Right after his second treatment Hunter and I discussed taking Nolan to a new doctor that specializes in functional medicine and autism. We did this when he was five years old and saw a doctor in Baton Rouge, Louisiana. In functional medicine, the doctor treats the patient as a whole and runs specialized tests to get to the core problem. Insurance usually doesn’t cover these tests and doesn’t cover the doctor visits because they spend 2-3 hours for an appointment. When we did this in 2019 we learned a lot about specialized diets and supplements that have helped Nolan so much over the years! Since we’d had two rounds of stem cells I couldn’t help but wonder if he still needed some of the supplements and diets he was on. There is a doctor in Florida who is very well known for treating kids with autism and other disorders using functional medicine. I’d always wanted to see him but when Nolan was five, airline travel seemed impossible. Flying to Panama City, Panama twice made Florida look like a piece of cake, so we booked an appointment!

Of course, there is a wait with everything in the autism world but we finally flew to Florida in July to see Dr. Rossignol. It was a breath of fresh air to talk to a doctor who knew what we were going through. He has two sons with autism who are now in their twenties. He used to be a family doctor until he saw how much functional medicine helped his sons. After that,  he started treating kids all over the country full-time! At our appointment, he planned to run some of the same tests we’d done five years ago but also added some I’d never heard of. He also recommended a 24-hour EEG to test for absence seizures. I knew that kids with autism had a higher risk for seizures but Nolan had never shown any signs so it wasn’t something I ever thought about. Even so, we agreed to do the test while we were there in Florida. We figured it wouldn’t hurt to know for sure. The staff in his office put lots of little electrodes and wires on Nolan’s head, wrapped him in some gauze, and put all the little wires and the recording device in a cute little backpack. Nolan wasn’t really happy about keeping it on after we got back to the hotel but we worked through it! I don’t think either one of us slept much for worrying about one of the electrodes coming off! The next morning we took it all off, got him a good shower, and returned everything to the office very relieved it was over! 

After that appointment, we made a trip to Legoland and stayed for a few days of fun!  This would be the first time we have taken Nolan to any kind of amusement park! Harper had always wanted to go to Legoland and I always wanted to let Nolan try a roller coaster! I had a feeling he was either going to really hate them or really love them!! The staff at Legoland were amazing with Nolan and so accommodating and patient with him! Nolan tried a roller coaster with his dad and absolutely LOVED it!! He rode it so many times! I was also really impressed and proud of him while waiting in lines. Harper loved Legoland as much as she always hoped to and was so great at being patient with Nolan too! While we were completely exhausted and ready to get home, the whole trip went well! I never dreamed that the four of us would be able to take a big trip like that and I’m so thankful we did! 

Once we got back to Mississippi we did some of the tests Dr Rossignol prescribed and then waited for results. That’s the hard part! In the meantime, school started back up in August and we somehow had a 4th grader and 5th grader in the house! For the first time, Harper and Nolan go to the same school and I think they love it! Nolan got right back to his routine of hiding his backpack every morning and started saying, “Bye bye school.” Don’t be fooled though, he does well at school and has a great day! I am sure he would rather be at home laughing and dancing to Bluey than learning and sharing with friends at school! This year I requested to pick him up from school at noon each day and do outpatient therapy in the afternoons. He does speech, occupational therapy, and ABA therapy in the afternoons and so far he’s doing great!

We had a meeting with Dr. Rossignol in August to go over the test results and our new plan. In good news, Nolan’s inflammation in his digestive system had improved a whole lot! However, his tests showed that he has some serious mitochondrial issues and a deficiency in some key vitamins his body needs. The mitochondria are the power supplier of the cell and when there are problems there, the body and brain can’t work as well as it needs to. While this isn’t news we wanted, there are things we can do to improve this for Nolan so with the help of Dr. Rossignol, we are working on that now. 

Nolan’s 24-hour EEG only worked for three hours because one of the electrodes came off before he even went to sleep. We were so upset! Apparently, he was jumping on the bed in our hotel room and that wasn’t a good idea!  In the three hours it did record though, there was seizure activity noted so Dr. Rossignol wanted to repeat the test. We weren’t sure about flying back to Florida for that, but we found out the same EEG company also has a clinic in Texas! So Hunter, Nolan, and I drove to Dallas and got the EEG done again! This time around Nolan wasn’t as cooperative because he knew what to expect, but the people at the clinic were amazing with him! No part of it was fun but we got it done! 

After what felt like forever, Dr Rossignol requested a Zoom call to discuss his results and I knew that couldn’t be good. I figured Nolan was probably having some seizure activity in his sleep since they noted one while he was awake. But the results showed that he was having them very frequently. While these types of “silent seizures” can happen in autism, the doctor said that Nolan’s were happening significantly more often than he usually sees. The area of his brain where they saw the most seizure activity was the same area that controls language and understanding. That explained a lot! We don't know how long these have been happening to him but we’re so thankful we know about it now. He will start seizure medication soon and we are nervous but hopeful about it. Dr. Rossignol said in his experience about 80% of kids who are treated with this medication have positive results with speech and behaviors. We aren’t getting our hopes up, but praying that Nolan’s life will be made easier with this! 

We are in awe of the progress that Nolan has made so far this year. I never could have imagined he would be doing so well and we only have God to thank for that. He has shown us the open doors to take and helped us when things got really hard. It hasn’t been easy at all but seeing Nolan happy and able to be more independent in this world is worth everything. It’s a shame he has to work so hard to live in this world of ours but I’m thankful for the friends, family, and doctors who have selflessly helped him! Please continue to pray for him and I’ll try to keep the updates a little shorter and more frequent next time!