Issue 54: Ways to Survive ASD Parenting and Stay Thankful
Issue 58: Winning Ways to Share the Love with All of Your Children
Issue 81: When Special Education Fails to Be Special
Can we talk about this cool contraption first? Seriously, I want one of these for him at home. It's my dream to find a way to keep him in his bed all night. Right? Just once it would be nice to not have him sandwiched between me and John in the middle of the night. We did get a new king bed recently and that has helped. At least I am not teetering on the edge anymore.
So vasovagal syncope. It's just a big fancy way of saying fainting. Mind you, Jerry has never actually fainted before, but for years, he has complained of not feeling well accompanied by becoming very pale and getting all clammy. We always thought it was seizure-related and had to do with his epilepsy. Turns out that's not the case. The cardiologist told us today that the symptoms are completely unrelated to his neurological disorders.
According to the Mayo Clinic, vasovagal syncope occurs when the part of your nervous system that regulates heart rate and blood pressure malfunctions in response to a trigger, such as the sight of blood, heat exposure, being injured, etc... In Jerry's case, there are no triggers other than standing upright.
Your heart rate slows, and the blood vessels in your legs widen (dilate.) This allows blood to pool in your legs, which lowers your blood pressure. Combined, the drop in blood pressure and slowed heart rate quickly reduce blood flow to your brain, and you faint. Again, Jerry has never fainted, thank the Lord.
He did come close today however. He was strapped upright to that tilt table for approximately fifteen minutes when he started moaning and saying he didn't feel good. He got real pale, lips included, and his head started bobbing up and down and his knees started to buckle. That's what the straps are for by the way. They keep you from getting up close and personal with the tile hospital floor should you face-plant.
The cardiologist monitored him for a few more minutes in that position, watching the heart monitor and blood pressure machines he was hooked up to. When he'd seen enough, and Jerry's blood pressure dropped to 93/64 and his heart rate to 55, he had the nurse lay him flat again and we waited for his color to return.
There is no explanation for Jerry suddenly having this, it is common in teenagers, and many of them outgrow it. Until then, he is to eat lots of salty foods, take salt tablets twice a day to increase his blood pressure, and take Atenolol before bed. It is a beta blocker and will help regulate his heart rate and control his vasovagal response. On a side note, I find it ironic that, while most of us struggle to maintain a healthy blood pressure and weight, Jerry's goals are to eat as much salt as possible and consume as many calories as he can. Seriously! Livin' the dream buddy!
Unfortunately, it's another medication for him...and after we worked so hard to wean him off all of those other ones. Ergghhh! But this momma ain't messin' with low heart rates and blood pressure so no guilt here!
So there you have it. Thankful it's not more serious. Thankful it's treatable and he'll likely outgrow it, and thankful we caught it before he started fainting in school and possibly hurt himself in a fall. The enigma that is Jeremiah just keeps right on growing, doesn't it? Never a dull moment in our home. Pile it on that poor boy. Still, God is good...all the time.
When Jerry went for his check-up with the neurologist yesterday, he was concerned about how low his heartbeat was. It was 60 BPM. His blood pressure of 100/65 was also considered low for a teenage boy. Dr. Foradada looked back over his records and previous visits to see that his heart rate normally ranged between 75-87 BPM. Since we have weaned him off the majority of his medications, this cannot be a side effect of anything he is taking. So before we left his office, Dr. Foradada called a pediatric cardiologist and scheduled Jerry for a complete cardiac work-up and EKG this morning. Jerry has also been complaining of headaches. His seizure medicine is also used to treat migraines and so the only logical explanation for the headaches is the low BP and BPM.
Dr. Ballal did a sonogram on Jerry's heart. This morning his heart rate was in the 50's. That, along with the fact that he is bruising easily and always has cold hands ensured we came home with a 24-hour heart monitor. Dr. Ballal is curious what his heart rate is when he is sleeping if it is so low when he is awake. The doctor did say that the low heart rate could be from his rapid weight loss, but even in the hospital for the SMAS over the summer, his heart rate never dropped to this low.
Next week we will go for a tilt test at St. Joseph's Hospital. They strap him to a table and put a salt-based solution into an IV and monitor his blood pressure every two minutes for half an hour. At that time, we will also get his test results from the heart monitor.
Until then, he is milking this for all it's worth! On the way out of the doctor's office I told him to fix his shoe. He said, "I can't. I have this heart monitor on." Oh brother!
On another note, this child has NOT gained 1 pound yet! And his eating habits are slowly regressing it seems. At least three times in the last week, he chose not to eat his lunch. And he may or may not have eaten breakfast on those days either. He's been saying he doesn't feel well and that he feels sick to his stomach or it hurts. We see the GI doctor in another week and a half so I will save my concerns for her.
I'll keep everyone updated!
Ok, so I promised an update on Jerry and his behaviors since being weaned off all but two of his medications. It has taken us a while to figure out what is different and then figure out how to put that into words, but I am going to try. So here goes.
His vocabulary seems better, slightly more advanced. He is using words and phrases that I know he has heard before (because he mimics), but we never heard him say until now. And he seems to use them appropriately, which is humorous at times. "Apparently," "for the life of me," "going to be the death of me yet". Those are just a few of the ones we have heard. They always catch us off guard and crack us up.
He has more energy. While he is growing into a typical teenager who doesn't like to get up in the morning, he is definitely less lethargic throughout the day, which has equated to him doing more work in his class at school.
He wants to socialize a little more, and this is not always a good thing because it doesn't matter if it's in the form of asking a complete stranger why they have blue hair or who the naked lady is that's represented by their tattoo on their arm. And occasionally, he will tell someone their breath stinks or berate them for liking the Bucs. Sorry Tampa fans.
That brings us to the sensory issues. He is suddenly super sensitive to smells. My coffee stinks when I make it. Everyone's breath stinks, whether or not he is actually close enough to smell it. The car smells funny. You name it, it smells.
He is more emotional too. He also seems to have more empathy towards others. Instead of laughing at them when they get hurt or something bad happens to them, he sympathizes with them a little. He is crying a lot more now too...real tears. In addition, he is more sorry and upset with himself when he has done something he knows he shouldn't have done. He may seem to not care or laugh about it in the moment, but as time passes, he feels bad. He even says he feels bad because he knows he sinned and Jesus is mad at him. That's new.
Changes in his routine cause cataclysmic meltdowns of epic proportions now. Before, he just rolled with it for the most part. He maybe didn't like it, but he got over it and any tantrum about it was short-lived. The world is now ending when we change his routine. A few weeks ago he had his occupational therapy evaluation at All Children's before school. I took him to school late. I probably should have just called the school day a wash because he had a bad remainder of his day and they said he just could not get into the routine after having arrived late.
He is irrational beyond belief. The cartoon at the top of this post is a perfect example of what I mean. This is probably the hardest trait to deal with quite honestly. One week he likes the shaped macaroni and cheese (Dory, Star Wars, etc...). The next week, it is gross and only the regular noodles taste good. Leftover honey chicken can be cooked in the oven, but not the toaster oven while leftover pizza needs to be cooked in the toaster oven and not the oven.
I am the only one allowed to make his frozen pot pie dinners or his oatmeal for breakfast because it tastes better when mom makes it. If I pack his lunch for school, I cannot put it in his lunchbox because things go stale in there. Even if it needs to be in a cooler, he will not let me use the lunchbox. And all food in containers in the fridge is bad. Leftovers are a no-no. It has to be brand new out of the package for him to eat it. He is usually thirsty after school and so I took him a thermos of his favorite orange juice the other day when I picked him up. I ruined it because I put it in the thermos.
At Subway, even if he is getting the same sandwich as someone else, it has to be on his own paper and no touching the other person's sandwich. John tried to split a meatball sub with him the other day and you would have thought he was asking Jerry to fast for 72 hours. My Lord, those poor Subway employees. He was screaming and kicking the soda cooler and shaking his fist all red-faced at us. He wanted a meatball sub (a 6-inch) and so did John, but they could not prepare the 12-inch sub and then cut it in half. That's just wrong according to Jerry.
This irrationality has us walking on egg shells sometimes because you never know what will set him off. But if you do know, you choose to humor him, no matter how insane the request may seem. It's worth it to avoid the storm.
We still struggle with OCD tendencies...repeating movements and phrases, obsessing over dates of upcoming events and counting down the days until they arrive. This one is an endless battle for him.
Basically, Jerry in the raw (unmedicated) is autistic. Yep. Whereas the medications masked a lot of those tendencies before, we are having to learn how to cope with them for the first time now. All in all, he is no worse than he was on the medications and maybe even a little more tolerable behavior- wise. While we do still have some aggression and cursing, they are nowhere near the level of uncontrollable rage that had him screaming he wanted to chop our heads off before and kill us with a knife. Now he just hates us from time to time and wishes he had new parents. That's not autism. That's teenager.
And we saw Dr. Foradada for the first time today since weaning Jerry and had to confess to him that we did so without his knowledge or supervision. He was totally fine with it.
I am a Christian. I am a wife. I am a mom. I am an author. In that order.