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Sit and Wait

Heart clockBy Cathy Jameson

It was supposed to be a quiet Friday.  

But Ronan woke up early.  

Soon after, he started having seizures.  

We haven’t seen those in a really, really long time.  When he was having frequent seizures years ago, they had typically been subtle.  Some were big and scary, but for the most part, they were small and quick.  The ones on Friday were not so subtle and mimicked seizure activity we saw briefly back in December.  Remembering how those knocked him off his feet, I rearranged my plans Friday morning.  Sitting seizure watch and waiting for them to be over was much more important.  

I never had to use the rescue meds, thankfully, but a call to the doctor was in order once things subsided.  With how infrequently the seizures are lately, I wanted to get verification that our protocols were still valid.  A nurse answered right away when I called the neurology office.  After answering a slew of questions, my call was logged and forwarded to the attending.  Like earlier, I had to sit and wait for a reply.

The doctor called within two hours.  This isn’t his usual doctor; she’s temporarily away from the office, but another doctor we met at our last visit called me back.  Grateful that she had some history with us, she started by saying, “Hey, so sorry to hear that Ronan had a tough morning.”  It’s always encouraging to hear Ronan’s medical team start their conversations with compassion.  She then went right into his history, listing which meds he takes and when.  We talked about what we tweaked last time and what today’s seizure activity included.  What I saw was similar to what happened six months ago, but new stuff happened also. Could these be stacked seizures?  

He’d get a little break. But while sitting on the couch, clusters would come in cyclical waves. I couldn’t wait for them to be over.  He’s unable to tell me, but I’m sure he wanted them over, too. Seizures suck.  They really, really do.  So does waiting for Ronan to wake up after seizures.  Will he be refreshed?  Will another round begin?  Will he be scared like he was when the first ones started?  Immediately after these episodes, he finally gets a break to sleep off the intensity, but I am jarred and can only think of the worst ‘what if’ scenarios.  The only comfort I have ever felt in these terrifying situations is that Ronan has reached for me.  

While his vision is affected by these latest seizures, he still tries to find me.  Like that time in December, I thanked God that I happened to be home and only a few steps away from him when this all started on Friday morning.  That reach, that confused and scared stare, it was so heartbreaking to see.  Dear Lord, it was scary for me.  I can imagine it’s a thousand times scarier for my son. 

As Ronan slept it off, I got to work looking up seizures again.  It had been a while since I had to look those up.  Last year, we thought he might have been experiencing something else, so I put more effort into other topics.  Knowledge is power, though, so I got to work reading medical articles and watching medical videos about potential causes, treatment, and research.   

I didn’t have to wait too long for Ronan to feel better.  By noon, he bounced back to his happy, chill self.  I pray he always willbe able to do that.  

Cathy Jameson is a Contributing Editor for Age of Autism.  

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Comments

nonnymouse

Cathy,

I remember seeing a post, somewhere else and quite a while ago. It was from a man who said they had discovered that patting, rolling, tumbling their child -- helped to shorten (or shortcut out of?) -- seizures. As soon as they saw any sign, he and his wife would jostle, lightly shake, etc. He said it really helped.

Seems like, as long as it isn't rough, might be worth a try.

Gerardo Martinez

Praying that Ronan's seizures subside. So scary to experience, yet what a blessing that you and your family are there for him in his hours of most need. We were informed that our son has subclinical seizures. That sometimes occur early in the morning during his sleep. They were picked up during an overnight EEG procedure. Seizures seem to affect a lot of our children and interesting that on some vaccines, seizures are listed as a possible side effect. What madness. Praying for all of our affected children and their families.

Gayle

Cathy, Yes it does knock the wind right out of you for sure. I hope that your new plan for Ronan is a success and you have good seizure free results. Thank you for your kind wishes for my son Alexander's new neurologist to be kind, compassionate and ready to help. xo. Gayle

Benedetta

I am sorry Cathy. This type of stuff happening after it all seems under control, just takes the ground out from under your feet, making you feel like you are falling in such a spin that you have no idea where the ground is. My son just told me yesterday that during his Jan 2020 ordeal with strep, OCD, anxious that he had fell and hit his head on his dresser. At the time he did complain of severe neck pain. I thought it was the strep that was causing the neck pain. I had no idea till now that it was a physical injury. He did not communicate that well to me. So, perhaps the fall was a seizure? You never know.

For our family; mast cell activation seems to fit. It seems to be the theory of everything that is looking like it is going to be a law.

Our immune cells; the mast cells have been made very sensitive, by the vaccines, and are producing large amounts of histamines. If we get an infection it will cause those mast cells to get busy producing histamines. Some times when my son was younger he have seizures before or during an infection. Usually strep. If parts of the body are over exercised, friction example is skin; causes mast cells to produce histamines. If my husband had a brutal day of work, he would have to go to the hospital because he could not breath, and he had low oxygen. Certain foods also have high histamines. Gluten is really high in histamines. It looks like that the whole FODMAP diet is right.

According to several guest on John Campbell's website (do you know of him?) We do produce enzymes in our small intestines, kidneys and liver that does break up histamines. We can make an enzyme that helps us. So, this enzyme breaks up histamine from our over active mast cells, but when we consume high histamine foods, it overwhelms those enzymes.

By the way rye is worse for me than just regular gluten bread. Even a small amount of rye, a half of a Tablespoon fermented rye added into a chaffle hurt all of my fingers and legs. Back in May of this year, my husband was with me at Trader Joes when I was purchasing gluten free bread, and he bought a loaf of sour dough rye. He loves it. A week later I had to rush him to the ER cause he could not breath. They gave him lots of steroids and he landed in the hospital for two days, very sick. I myself found I had problems with the gluten free bread. I just gave it up two weeks ago. I feel much better. I also found out that if I eat a whole lot of fresh tomatoes; along with picking them, touching the vines, it breaks out my skin. It is the matter of how much I eat, and how much I fool with the vines. I do love them and I still am able to enjoy fresh tomatoes, but there is a limit to how much I can eat. Overwhelming the enzyme and as they love to say; over filling the bucket.

John Campbell's guests says as there are foods that are high in histamines, to be avoided, there are also foods that have a high content of an enzyme that will break down the histamines. Pea shoots, are high in this enzyme. I bought a bunch of them to grow as a microgreen. Also we can buy animal forms of it, made from cow kidney cells in pill form. Liver also is high in this enzyme. Plus our own bodies do make it as well.

Another thing we can do besides avoiding high histamine foods, and taking this enzyme that breaks up histamines is to make sure our small intestine is cleared out at night. Small intestines are suppose to be clean of microbes. The small intestine sweeps out microbes at night while we sleep. To help it, we should not eat three hours before bed. It is also suggested that that before bed we drink a glass of water with two drops of iodine in it. This helps with the microbes. They also discussed that we need more iodine that we can possibly get unless we live on the side of the ocean and eating sea weed.

Histamines can effect blood pressure as well.
Nick posted on the article inflammation Highway that Olmesartan a blood pressure medicine is proving to be a good medication for seizure control. This is probably why we can eat high histamine foods and our sinuses all clog up, and ear infections.

Cathy Jameson

Thank you, Gayle. It knocks the wind out of you, doesn't it? Our team has been pretty quick to help and to come up with a plan. We'll pray the new plan for Ronan works - and we'll also pray that your son's provider is kind, compassionate and ready to help. xo, Cat

MamaBear

Ronan is blessed to have you, his dad and siblings as ever watchful guardians. May God grant him healing rest and renewal, and give you respite.

Gayle

Cathy, I am so sorry to read that your son Ronan had several seizures on Friday. My son also has epilepsy and the seizures are frightening to watch as he loses control of his body, his eyes roll up, his lips turn blue and he sometimes loses bladder control. He then awakes and is so tired he has to sleep because it is so exhausting for him. His seizures started as an adult and we had to see a neurologist who gave him an EEG and it showed the activity was in the left frontal lobe. He has been on seizure medication ever since and has not had a seizure in several years. Recently we got the terrible news that his neurologist had passed away at the age of 62 and we had to find another doctor. We did that and have an appointment with her over the summer. We are faced with such tremendous challenges with our sons epilepsy and I can only pray to God to keep our son, your son, and others safe and protected.

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