Fragile X and Seizures

Hi All!! It has been too long and I truly apologize! Things have just been so crazy with life, work, and the Fragile X Resource Center of Missouri. The last time we were together I was telling you about Jackson starting school and our trip to visit EBK at Rush University…man that seems like ages ago, so let’s get caught up!

From a school standpoint, Jackson has been making so much progress. We just had his IEP meeting and he was able to mark off quite a few of his goals, which is incredible!!! He also made so much progress on Communication, that he will move into a Speech goal in the new school year. While you might be thinking Communication and Speech are one and the same, that is not the case. This year, he and his therapist were really working on building up his vocabulary comprehension, getting him to make correct letter sounds, working on finishing a phrase like, “Cow says…” He has done such an incredible job building his vocabulary, working on sentences with words such as What, Where, When that in the upcoming school year they will move into enunciating and helping him use those words he has learned in full sentences. He will work on positional words and understanding what they mean and so much more!

From a behavioral standpoint, after we met with EBK we tried a few different medications to help with his aggression we started seeing. Jackson was self harming with head-banging into walls or the floor, he was also hitting us and his brother, and some peers at school. The hitting at school was actually described more as hands on peers and not in an aggressive manner, like he was trying to effectively communicate to get their attention or to let them know they were in his personal space. Regardless of the intent behind that we had to work on a way to help him communicate that without hands on someone. We found a medication that seems to be doing wonders for his ability to focus at school, follow instructions and helps him with patience a little more. It is truly amazing!!

I have said it before and I want to say it again in case we have new readers seeing this for the first time. When I started this blog, I did it to be open, honest, informative and real. I don’t want to just highlight the win’s we have with Fragile X, because that is just not realistic. We have amazing days and we have days we can’t wait to get to the end of…just like anyone else. Recently, Jackson and Fragile X took us on a hellacious 2 week ride. On April 12th, we went to the playground behind our home like we try to do regularly to help wear the kids out before bedtime. Jackson had been doing so amazing with all of his climbing skills and therapies, so he was showing off climbing on a chain ladder. He then go a little more brave and went to try and climb down a high piece of equipment, but was not successful. He fell and broke his wrist with a buckle fracture. So, Wednesday we were at the Children’s Hospital getting x-rays and a cast that he would have for 3 weeks.

Fast forward to April 24th, Jackson and I were just arriving home and I walked him into the house and went to get our bags from the car. As I walked away from the door, I heard a click. Jackson had turned our deadbolt on the door and locked me out. I thought I had a spare key in my car, but I didn’t. I tried calling Daddy, but he was out with our oldest and didn’t answer. I tried to remain calm and patient as I gave Jackson instructions to turn the top lock. He kept repeating, “top”, but fumbled with the door knob and not the deadbolt. I could sense his frustration building. I had a screwdriver set in my car and tried to wiggle the lock, so he would know which one to turn and I had an old gift card in the car and tried to slide that in between the door to see if I could break in that way…neither was successful. Finally, Jackson was screaming and crying and I was panicking. I finally decided I had no other option and started kicking and putting my shoulder into the door. After a few rams, I had kicked the door in and snuggled Jackson so much. He was a wreck after watching me kick that door in and I needed the snuggle as much if not more than he did. New door and Smart Lock here we come!

The very next day I was headed to the airport for a business trip to Austin. What was supposed to be an easy 2 hour flight turned into an all day event due to a medical emergency on our flight. We actually had to make an emergency landing in Oklahoma, where we found out the passenger did not survive. You see something like that in a movie or tv show, but never expect that to happen on your flight and you certainly don’t expect someone to die. It was such a traumatizing and heartbreaking thing to witness. When I finally made it to my destination, I had been in Austin for just about 2 hours when I received a text message from my mother in law letting me know something was going on with Jackson and I needed to call my husband. I stepped outside from my business dinner and as soon as he answered I knew it was bad. He and Jackson were in the back of an ambulance. Jackson was not really responsive and his breathing was very shallow. During our call, the paramedic informed us that he was having a seizure. She spoke a little louder, so I could hear her and told us she was turning the sirens on, but don’t panic. Easier said than done. At this point there was not much more I could do other than let them get him to the hospital and fill me in once he got there. As much as I wanted to get back on a plane and head home…after what I just went through I could bring myself to do it. I would head home first thing in the morning. As the night went on, I received messages giving me updates, but the scariest one of all was that they needed to divert to another hospital. At the time, I actually thought that was a good thing meaning he wasn’t as bad as they thought, so they could take him to a closer hospital instead of Children’s. What it actually meant is that he was not going to make it to Children’s, because he was in that bad of shape. His oxygen was down to 40% and he had to be intubated. After a bit at the first hospital, he was finally stable enough to be transferred to Children’s, so they took ambulance ride #2. He had X-rays, CT scans and an EEG and was heavily sedated for most of that. Jackson has not had another seizure and we hope and pray it was an isolated incident, but because he has Fragile X syndrome, he has a higher risk for this to be a recurring thing. Seizure disorder is diagnosed in approximately 15% of Fragile X males. We now have a Seizure Action Plan in place between our home, school and all of his doctors and we also have emergency medication to administer if this happens again. Hopefully we never have to use it.

I successfully made it home the following morning and went straight to the hospital. Jackson stayed for 2 days until he was able to eat and drink on his own. Upon returning home, he still seemed off. We knew he just went through hell the past few days and that is probably what the issue was, but there was just something else that seemed off. Well as luck would have it, he also had an ear infection. This guy could not catch a break!!! We are finishing up our antibiotic and we are happy to report he is back to his amazing self, thank the Lord!!

Now that we are all caught up, I hope to keep updating more regularly again! We appreciate you following us on our Fragile Xperience!

XOXO,

Lesley