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Nathan Tough, Bradford, PA (2025)

05/08/2025

Today, Nathan had a rapid fire of myoclonic seizures for about an hour this morning. I know that sounds crazy. But. They are a jerk type of motion. And they come and go. Not anything that is requiring emergency meds, and we can’t do anything but monitor him. The school had called me, I got to him and sat with him and kept him company as he came back to baseline. Once that happened he was ready to conquer the day! His teacher did contact me again a bit ago to let me know that he alerted her of him not feeling right so she could get him to his safe space and there he did have an absence seizure. Again, once at baseline he was back to being ready to tackle the day.

I spoke with some staff at the school regarding Nathans seizure plan. We are thinking the bus ride to school has been playing a role in his frequency of seizures, as he has been having activity shortly after getting off the bus. He does have an hour bus ride and we think it could be over stimulating to him. So that being said, I will be taking him to and from school from here on out to help accommodate him and help ease his overstimulation in the morning. As well as I will be driving him to his field trip tomorrow that he is ever so excited to go to and to have mommy as a chaperone!

Now! THAT BEING SAID. As some of you know, some might not. I left my job as an orthodontist technician a few weeks ago, so I can be closer to home as I was working an hour away. I had an opportunity come up that opened up my availability to my kids and was so much closer to home and the school. With that, I want to take the time here to thank Tami and Duane Arbogast my new bosses at morning rush out of rogersville, Pa. For being so awesome! They are so understanding and always make sure we put our families first. As soon as my phone rings they don’t even question me, they said “go! We got you!” And send me out to get to Nathan. Because of them I can have the availability to be there for my kids and help accommodate Nathans needs! I can also say, I LOVE my job. So again, thank you Tami and Duane.

I have spoke with Cleveland and we are bumping Nathans onfi back up to 2ml where it originally started and theyve asked us to video any seizure activity we see so they can help further adjust his treatment without Making us travel there 1837473 times.

Keep praying that we can get thru this rough patch and show epilepsy who is the big dog around here!💪🏻

05/07/2025

Today was scary, mentally draining, and overwhelming. But. Today was Epilepsy.

Got a phone call from school this morning, I needed to get there asap. Nathan was having a seizure and had been unresponsive at times. I ran out of work and to my car and luckily made it there in just a few minutes that felt like an eternity. Nathan had been convulsing off and on. Once I got to him and we figured out times it was decided I was going to administer his emergency meds. Once doing so we tracked time again. 5 minutes had passed and his seizure was still going. 911 was called and we waited for the ambulance. Once there they got Nathan checked and loaded up, we headed south to Ruby memorial children’s. By that time he had over came his seizure and was feeling better and slowly starting to perk back up. However, they still did labs to check everything over. All came back good and we were told it’s just a part of epilepsy. Which we totally already knew but hearing it kind of sucks. But they are right. It’s just epilepsy. It sneaks up on you when things are going good. It sticks around when things aren’t so good. And it does what it pleases. So today, as scary as it was… it was just epilepsy.

Nathan is now on his way home and doing well. A little tuckered out but excited to get a cheese quesadilla to eat. (Lol)

I want to take a moment to send a HUGE thank you to the staff at school. Not only were they on top of it (as usual) but we had the elementary principal, high school principal, superintendent, academic director, both school nurses, and multiple teachers and staff members staying by Nathan, and for stopping in to make sure he was doing okay and that we were okay. As well as the follow up text and calls I’ve received from them! We are blessed with the best and I couldn’t be prouder to be a pioneer! 💙💛

04/29/2025

Nathan came home from school again this morning after an absence seizure with some myoclonic jerking involved.
He’s home , resting and in good spirits.

However, this is so concerning. This is happening more frequently. After all this time of no seizures they pop up! Ugh epilepsy sucks!

Anyway. Has anybody ever had similar thing happen to them or a loved one when they have similar activity? Such as, Nathan’s pupils change and he looks exhausted thats how we know something is up with him. Then. He will stare thru us, delayed reaction. And will say (and this is what I’m curious on!) his hands feel funny. He can’t squeeze anything almost like he’s weak and his hands are numb. He can’t really describe it to us im just imagining that’s what it feels like. But it is so weird. He had an absence seizure Lastnight as well and started with telling us his hands felt weird and then before we know it he’s in an absence seizure.

Has anyone else had experience with the weird hand feeling? I’m in a desperate search for answers. I have reached out to Cleveland requesting they run labs and check levels. In hopes that SOMETHING will show up for us.

We can, and we will get over this bump in the road. 💜💜

04/23/2025

Happy Wednesday friends.

Unfortunately this morning, Nathan experienced more seizure activity at school.
He is home, resting and back to his normal self now. I have spoke to a nurse at Cleveland clinic who is going to consult with his neurologist and will be back in touch with us to see what we are to do.
As some of you may know he recently had this happen at school and it was when we were trying to wean his meds, upon following up with Cleveland they wanted us to give him the meds they were trying to wean to begin with. So he has been continuing to receive his meds regularly but this still happened.
Again, I am SO VERY THANKFUL for Nathan’s aides around him as well as the teachers and fellow staff at school who are SO aware and can tell when something is off on Nathan. Because of them I feel confident in nathans care at school.
We always have emergency meds on hand as does the school. We haven’t had to use them yet as his activity hasn’t been steady for 5 minutes or more, it’s start and stop.
I thank you all for your thoughts and prayers for our big man. I’m hoping this doesn’t progress any further. 💜

04/10/2025

Hi friends.
It’s been a bit. But I have an update for you all.
Nathan had his check up with Cleveland Clinic last Tuesday virtually. They wanted to try to wean Nathan of his onfi slowly. At the time he was taking 2ml in the morning and 10ml at night. So we agreed to start by dropping to 1ml in the morning and keeping 10ml at night and then this week we would go to no onfi in the morning and keep 10ml at night. The 1ml he did great on. Today, we started the no onfi in the morning. It did not go as well as we’d hoped.

I received a call right after taking Nathan to school (he looked and was acting normal at drop off) from his teacher. Her and an aide had noticed on the breakfast room that Nathan did not look like himself, and said his head really hurt. The immediately took him to a safe place in his classroom and noted some concerning things, such as eye movements, body parts stiffening, small amounts of vomit, one pupil larger than the other, and a delay in responses. I had rushed my way to the school and got to him, he certainly was not himself. I kept the emergency meds on hand and called his dad as we headed home. He came home , i gave him the 1ml of onfi we tried to wean today, he rested comfortably and has since been up and is back to his normal self. I am SO SO thankful for his teacher, and the aides present that recognized a problem right away and acted so quickly. They are Angels!

After so long of him not having seizures it’s so unsettling. However I have hope that it was just from the med change and we will just stay where we are at with meds at 1ml in the morning until we can have an in house monitoring at Cleveland. I have reached out to Cleveland and am waiting to hear what our next move will be. Until then, just pray. 💜

Much love,
Nathan and Family.

03/26/2025

💜January 18, 2019. The scariest night of our life, lead to our biggest mountain we had to tackle ever. BUT.
We put on our hiking gear and we conquered that mountain!!

Epilepsy is more than just flailing around. It affects every single aspect of one’s life, and those around them. Our boy is the strongest boy! For him, we wear purple!

Those supporting National purple day in support of epilepsy awareness, thank you!! Share your photos of your purple below!! 👇 💜

03/26/2025

Are you wearing your purple today? 💜💜

11/01/2024

Happy November Friends!

Nathan has been doing so well lately! We’ve been making small dosage changes to Nathan’s meds in hopes that eventually by the time he hits puberty he can be med free!! It’s a possibility and something we want to manifest!!

Since the last update Nate has been a busy bee, he plays soccer, he’s been sxs riding, and he’s been loving on his doggy Lydia!

03/20/2024

WE ARE HOME BOUND!
So, let me fill you all in.

Nathan has developed some what is to believed side effects from his seizure meds, such as trembling, tiredness, and macrosytosis (enlarged red blood cells).

He was scheduled to come to Cleveland Clinic for Video EEG monitoring to slowly wean meds and see if he can withstand smaller doses or not meds at all.

Unfortunately, upon the first night stay while still on meds they saw some spikes which is basically his body wanting to have seizures but his meds preventing that. With that being said, they said there was no way to wean his meds successfully.

So, we decided to make changes. This med combo is the only one that has worked for Nathan. So we didn’t want changed to be so significant. What we came up with was changing his depakote from a liquid dose three times a day to a pill twice a day. This way it wasn’t so up and down in his system it is more of a slow release. We hope this helps subside some of his tremors at the very least.

Nathan wants to say thank you so much to everyone who has called, messaged, and FaceTimed to check in with him. He can not wait to be home with his brothers and Lydia!

02/27/2024

Well, Nate met his new neurologist at cleveland clinic today. (Dr. Wiley retired) They want him to be monitored as she has a concern for his meds. She said at his last lab draw his levels were high enough to cause concern. His previous neurologist said they were fine. However his new one does not love that. She also noted some concerns and now would like him to stay for a visit to have another video EEG while they try to adjust and possibly ween his meds in hopes of no seizures. She believes he is having some side effects from being on these meds for so long. He already has developed macrosytosis (enlarged red blood cells) from being on the one for so long. Which will go away if he no longer is on it. She just thinks there is more starting. So. We venture back to Cleveland for an extended stay and observation while we make some nerve wracking changes. 💜

Nathan Tough

05/08/2025

05/07/2025

04/29/2025

04/23/2025

04/10/2025

03/26/2025

03/26/2025

11/01/2024

03/20/2024

02/27/2024

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