Episodes
Like for other families, it can take weeks, if not months, of planning to get an appointment scheduled with a specialist. Our specialists are pretty helpful and very respectful, so it’s usually worth the wait. Sometimes, it’s not because of their busy schedules that have us waiting; sometimes it’s something else that causes a delay.
The reason for our latest specialist’s visit is because for a while, Ronan has been experiencing something beyond his usual neurological issues. We communicated this with our doctor telling her what we were observing and what strategies we were using to keep Ronan comfortable during the episodes. When these weren’t just happening every so often anymore, we knew we needed to do more than just inform her of what was going on. Rather quickly, our usual quick convos turned into lengthy discussions. I appreciated her swift replies and how I could share more than just facts with her. Our concern was growing, and she could sense that. With how unusual things were becoming, we asked for testing. Our doctor agreed that it was time that something more needed to be done for Ronan.
We had everything set up for the big day: Time off from work. Bags packed. Hotel room booked. Since it was an early morning appointment, we wanted to be within minutes of the testing site, not have to drive the almost 2-hour trip there the morning of. With everything ready, and with our youngest staying with a close friend while we were away, we got on the road.
Getting into town the night before was one strategy that worked in our favor. What we didn’t factor in was Ronan’s sensory defensiveness during the much-anticipated appointment. No matter what we tried, he could not get through the procedure.
We tried everything.
Oh, we tried.
And we tried again.
But Ronan couldn’t cooperate. Sensory issues. Fear. Adamant refusal. It all kept us from being successful with the testing. I was crushed because we’d waited so long to get to this day, to this appointment, to the possibility of a solid answer of what was happening.
The provider who worked with us gave us some options.
But it’s another sit and wait for everything to align for us to try, try again.
I’m usually a perpetually hopeful person. Friday, I wasn’t. And it made me so sad to walk away. It doesn’t take just a few days to get things scheduled.
It takes time.
Our medical team will come up with another plan for us soon, though, so I know that I will find hope again. Until then, I pray that we can continue to comfort Ronan during whatever these episodes are. I’d love it if you could pray with us, too.
Cathy Jameson is a Contributing Editor for Age of Autism.
Prayers in the end is all we seem to have, so you have my prayers for sure.
I don't know Cathy, sometimes even knowing something from the test changes nothing when it comes to the brain. I often think of all the ice picks that they proceeded to do on 1000s, if not 10s of 1000s of people knowing they were making them worse.
I am in awe at how close we came to getting a gadolinium dye with an MIR, and only by the grace of God and two loving Lab tech that God placed in that position, refuse to give my son the dye. We missed that little unknown disaster; twice.
The first MIR made my son, dizzy, sick, nauseous as well. My guess that perhaps my son's first MIR made a slow brain bleed worse. I am assuming that the two cysts in my son's brain, cysts as in fluid filled, and that fluid was probably blood. Cyst was what formed to wall off the blood and get rid of it. I am assuming because no one tells me anything except the second time with an MIR, five years later that those white shining things that showed up on the MIR were not a blur from him moving, but were cysts.
I wonder about brain bleeds. People can heal most times which surprised me. My Brother-in- law, aunt and my mother all had brain bleeds in 2023.. My mother was the only one of those three that did not have a covid vaccine.
Why brain bleeds happen years after a vaccine to my son? Is it on going aluminum agitating blood vessels, and it takes years to get rid of it, Mercury too in my son's case? That is all in the past though, way back in the late 90s, early in this century.
Then here came 2019, Does strep bother blood vessels? Well it can damage the heart valves sometimes. I feel like that old poem about the loss of a nail, the shoe was lost, the loss of a shoe a horse was lost, loss of a horse a rider was lost. Anything that dampens the immune system like a seizure med, and we have strep getting into blood vessels, and the possibility of inflamed and then ruptured blood vessels? Sounds plausible to me.
I am putting powered nattokinase in powdered cheese that my family likes to put on their popcorn. I read research that it is good for blood vessels.
I need to pay attention to blood vessel health, after all that is what Kawaski disease is all about isn't it? We sure had that. Aspirin is the best thing for that, for inflammation that can cause brain bleeds, heart attacks, but wait Aspirin can cause bleeding.
My 93-mother died of a slow brain bleed that she had for 20 months. She would get sick, then heal, get sick again. She told me on a Thursday that aspirin was not the miracle drug I thought it was. I left it up to her to decide if she should take it or not. Friday morning, I called the ambulance to take her to the hospital because of vomiting. Brain - injuries: vomiting. I know the last four days of her life in the hospital she was begging for help as she slowly bleed into her brain, No one looked, no one knew. They were busy giving her blood thinner shots into her stomach as they treated a nonexistent bladder infection; and when that came back negative, they treated her for none existent pneumonia. Her gunky lungs came from them giving her too many fluids, for her nonexistent bladder infection. That part I figured out. I should have insisted on moving her somewhere else on a Sunday. Monday evening at 4 she finally...... Well, she might have been better off at home with no aspirin.
What role does histamines play in blood vessel health?
If we get into the subject of histamines, do we also begin to think of food allergies.
Is it food allergies, or some foods have more histamines to add to a human body already making too much of their own. Maybe it is both? Do histamines damage blood vessels?
That diamine oxidase (DAO) enzyme that is made in the thymus, kidneys, the small intestine that breaks up histamines might be a good thing to take extra of. Pea shoots they say, but maybe animal based beef kidney pills are better?
Or is all of this just wild goose chase?
Posted by: Benedetta | September 01, 2024 at 11:07 AM
Praying for Ronan. Praying for him and your family during this trial. Since our son has reached almost six feet and at times seems to have hulk power, it has been challenging to get blood work. In fact its been about 2 years since his last draw. He fears needles and puts up a challenge holding him down/still. The lab folks have refused to see him due to safety concerns. So definitely will be praying for Ronan. Blessings to all.
Posted by: Gerardo Martinez | September 01, 2024 at 09:06 AM
... and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.
Philippians 4:7
Cathy, I am praying for you and Ronan.
Posted by: Emmaphiladelphia | September 01, 2024 at 08:25 AM