It’s been a while since I’ve written a blog that is strictly a Malachi update, and I thought now would be a good time because we just had a doctor’s appointment with our neurologist and learned a lot more information.
It seems we have made the transition from “biomedically treating autism” to “there is something actually seriously medically wrong with my child “. Before, my understanding was that autism had a lot of underlying contributors, so you just work at them one by one and you see what makes a difference and what doesnt. Some parents start probiotics and their kid begins to talk. Some stop gluten and their kid quits stimming. Some parents begin B12 injections and their kid loses a diagnosis. The underlying cause is different for everyone, so essentially you treat each thing and see what improvement you get until they are healed. Some people do testing, some people purely go by Behavior. There is a science to this, and it isn’t made up.
So we were doing all of these things with Malachi, and we started to see a lot of improvement. It seemed that he was following directions and he seemed generally happier than he did when we started. (Which I now believe was mainly due to the change in his diet.) He also would say a few words here and there , and he was really progressing in therapy.
It was frustrating though, because we would see so many improvements, but then suddenly we would have a week where it felt like we jumped back two years. He would be stimmimg more, would refuse to do things in therapy, would become obsessive over Sweets and his iPad, would virtually seem like we couldn’t reach him. It was here that my PTSD would kick in, and I would start freaking out thinking that we haven’t even done anything and that something we were doing was causing him to go backwards .Then suddenly it would go back to normal and he would act fine again. So then I would think okay, it is working maybe this is just die off maybe this is just part of the process. Then sure enough, we would go backwards again. So this puts a lot of emotional strain on us and our family. Thinking your kid’s getting better and then he regresses, then you think he’s getting better and then he regresses. It’s really hard to know what the right route is to take, because I have a good understanding of what we’re doing, but at the end of the day the thought creeps and that I’m not a doctor. But unfortunately trusting a Dr is mainly what got us into this situation in the first place, so I have to be my child’s advocate and I have to be as knowledgeable as I possibly can be. Which is where google, Facebook groups, and friends of mine come in.
Then, just when I was about to lose my mind and I wasn’t sure what to do, Malachi had his first grand mal seizure. We took him to the ER and found out that he had high amounts of brain activity on his EEG. Then, we started dealing with epilepsy. Initially we believed that was his first, but upon further research we found that he probably had been having seizures for a long time that we weren’t aware of. There is a type of seizure called an absence seizure, where the person can simply stare off into space and be having a seizure. Actually, if you research types of seizures there are a lot of different kinds that a child could have that you would not even know about. Which, with a child who is nonverbal, that could be easily missed. So we started him on a seizure medicine, and we got an appointment with an integrative neurologist in Pontiac.
So they did a bunch of blood test, and sent him home with an EEG strapped to his head that we kept on for 24 hours. Today we went back and got the results of everything and now I finally have an understanding of what is going on with Malachi.
Sometimes in the evenings Malachi will randomly get extremely hyper. I’ve tried limiting the TV or leaving it off entirely, I’ve tried doing quiet play, I’ve tried making sure he eats no sugar whatsoever after a certain time. I’ve tried to swing him in his therapy swing, I’ve tried weighted vests. We have tried melatonin, nothing has worked. Then also, sometimes he will jump up in the middle of the night between 1 and 3 a.m. extremely hyper when he didn’t even go to bed until 10 the night before. Which obviously is not enough sleep. Again, nothing we did made any difference in this. Blackout curtains, fans in the room, White Noise everything you can think of. Today, our neurologist showed us on the results how at those times when he had the EEG on and those things were happening, his brain activity was off the charts. I could see on the results normal brain activity all night long and then suddenly at 1 a.m. it was all over the place.
What this means is, Malachi has a genetic susceptibility that causes him to have a weaker immune system. So at some point in his life he contracted a virus that he couldn’t get rid of. The virus may not show any obvious signs that it is there, his nose doesn’t even run when he has a sinus infection, and it flares up at random times, causing his immune system to overreact, attacking his brain. Which is where all of this increased activity comes from, And also why it didn’t seem like anything we were doing was working, because nothing was getting rid of this virus. That’s where the sensory processing disorder comes from, and that’s why it waxes and wanes.
Right now we are not sure what the virus is or how we are going to treat it. The first thing is to stop the abnormal brain activity, so it doesn’t result in more seizures. To do that we have to increase his seizure medication. Also, to clear out his sinuses because there’s probably lots of stuff that’s stuck in there that’s been there for quite some time. We’re stopping most supplements, and adding a couple different ones. Just to get him to be sleeping better and get him in a good mood so we can begin treating him.
Do I think everything we have done up until now was a mistake? No I do not. I just think that maybe it wasn’t as effective as it could have been, because the underlying virus does not allow his immune system to get better. So, we must get this brain activity under control before we can heal him. Which is what we are going to begin doing.
Do I still feel vaccines played a large role in my son’s autism? Of course I do. Weather the virus came before the vaccines or not, his immune system was weaker and we didn’t know. Which means that he wasn’t able to handle the insult the vaccines had on his immune system. Whether it was busy fighting a virus and that was why, or whether it was just too weak to begin with, he had reactions to the vaccines because his immune system couldn’t handle it like a normal person. Every single insult he has ever had to his immune system since then has made his health worse.
Either way we’re not giving up the fight. Right now, getting him healthy is what’s most important. Which is why we decided to put off therapy, and even School. Keeping him home with me and keeping him comfortable while we treat him is the best thing for him, we believe. Also, it just gives me the chance to be a mom again and take care of my kids. Play with them, do normal things instead of running around all the time. Take a step back while we address Malachi’s health, and possibly mine too.
One thing that I want to reiterate is how important it is to trust your instincts when it comes to your children, and never be afraid to dig deeper. We didn’t know Malachi had a weak immune system until it was too late. If your gut tells you there’s more to what your doctor is saying, dig deeper. Don’t let someone tell you that using Google is stupid. Don’t let someone try to convince you to just listen to your doctor and not research yourself. Every single thing you do matters. Don’t let society, or anyone else, tell you how to care for your kids. Love them, advocate for them, and let them be who they are.
Until next time …..💙