A little positive update

We finished Teydon's lorazepam prescription Wednesday night, Thursday he had some good improvements and today a little better. He has been able to grain some of his muscle strength and coordination back. And his talking is not as slurred. This morning he has been up and playing around. He's still a little grumpy and irritable but better. He is still having 7-10 grand mal seizures at night so that hasn't improved, still some sleepless nights. It is good to have a little glimpse of my little boy back. Not sure if we'll ever selectively use lorazepam again, we hated the side effects but it may have been what he needed, time to reset, relax. We are hoping his zonisamide will start kicking in, the doctor said it could take a week so we will go to next Wednesday and then decide where to take things if there is not any change in seizures. Thank you all for your prayers, love, support, for those who have brought dinner and for those who have come and spent the day with us helping out! We are so grateful for so many wonderful people in our lives. Thank you!!

Update

No changes yet, not for the better anyways. He's not having as many seizures during the night but still 7-10, better than 17.  He also has seizures when he's napping too, the poor guy can't get any sleep. Right now we are dealing with side effects from the lorazepam, he is very tired but won't sleep,  groggy, irritable, emotional, just really having a couple of rough days. We have one more day of the lorazepam so hoping emotions change a little once he comes off of that. The days (and nights !) are rough., he so bad wants to play and do things on his own but can't and that frustrates him and you can tell that he hurts and just does not feel good. Most our days are spent on the couch.

He will be up to his dose of zonisamide tomorrow night, the doctor said it could take up to a week to see results. We can continue to increase if this dose doesn't control them.

We hope that we can get our Teydon back sometime soon we are all missing him, including his little brother.  We hate seeing him suffer like this.

We are so grateful for the love and compassion so many have shown to us! Thank you!

Update

Last night Teydon had 17 seizures from 11 pm to 11 am, the most that he's ever had. :( We decided to email the Dr., we've never had a doctors personal email before, it is so nice! We are going to increase his Zonisamide quicker every 3 days instead of every week. She said it will probably take a week once he's up to his dose to see results. She also called in a prescription for another medication that we can give him for 3 days that will make him really sleepy. It should control the seizures, only for the 3 days but hopefully get him some relief until we can get Zonisamide to kick in.

I am so glad that we switched doctors, best decision we've made! It feels more personal and for her to respond to our emails on a Saturday and so quickly was so awesome! We would go days without hearing from primary childrens, especially over the weekend. She also has some alternative ideas that doctors at primary childrens didn't. We are very blessed! Thank you for your prayers and keep them coming.

Love our Tough Teydon!!

Throughout the day and night tonight I've been watching Teydon, tonight as I think about what I saw I am so impressed by his attitude and STRENGTH. Despite this huge challenge in his life he continues to live life to the fullest! He continues to have a smile on his face, to joke and play around, to care for his brother that build a ramp for his little brother's toy jeep to match his, to tease us, and continues to be interested in the same things as if he didn't have this disability. He is amazing as I sit back and really think about him his blog title is so true Teydon Stands Tough! He's a lot tougher than I would be or even more than I am now. It's hard not to think of all the bad, negative, and how hard this is to deal with. I need to be more like Teydon and see the good despite this challenge. My son is an amazing example to me. My heart is so full of love for him!

There are no improvements with seizures or the side effects from them but I have seen bits and pieces of my little boy today so I will take it! We upped his meds on Wednesday. He won't be up to full dose for 3 more weeks but hoping to start seeing some relief for him sooner than that. I will keep updating. Thank you all for your thoughts, prayers, and acts of service towards us. Know that they don't go unnoticed, we love and are very grateful for you all!!

When it all started..... to current situation

When Teydon was about 2 and a half he had his 1st grand mal seizure ( Grand mal defined ), doctors said that it was just a coincidence and probably will be his only one. A couple days later he had another, they did a MRI (it was clear), and an EEG it showed seizure activity. We didn't want to put our little guy on medication so we went a natural route. He would go months in between seizures so we were hopeful, until about a year after we started the natural drops he had 2 grand mals only a day apart and during a time he usually didn't have any seizures, so we decided to put him on a medication and do the natural drops.
Keppra seemed to work for a few months then on vacation in Cali he had a bunch of grand mals, we started upping Keppra until he eventually maxed out. Around the same time he maxed out he started to have drop seizures ( Atonic ) and ( Tonic seizures), these happen all throughout the day.  They decided to start him on Lamictal and see if that would get them under control. We ended up maxing him out on lamictal too and it wasn't helping control the atonic or tonic seizures, the grand mals were under control.
With lamictal there is a side effect of a serious blistering skin rash and one day he got a rash on his stomach, that wasn't induced by anything else, and I was worried it was the rash. It ended up not being the rash but it still made me nervous so we decided to take him off lamictal. It was an 8 week process to get him off. He was completely off the weekend of Thanksgiving (2015), while on vacation that weekend he started to have multiple grand mals, only during the middle of the night, early morning. We waited a few days to see if he needed to level off lamictal and we had a family fast to see if we could get guidance on what to do. We decided to put him a very low dose of lamictal just to the point that the grand mals were controlled again. It worked for a week-2 weeks but then the grand mals came back.
I called his dr at Primary Children's (well we leave a message with a nurse, who then talks to the doctor, then we wait to hear from her) about upping lamictal. Teydon's primary Dr. had told me about a pediatric neurologist, Dr. Morita, who had left Primary Children's and started her own practice. After waiting for 4 days and not hearing anything from PC, we decided to give Dr. Morita a call. I was able to get an appointment the very next day, and she had multiple times available. With PC you had to wait 3 months for an appointment!
Tuesday, January 12, 2016 Dr. Morita suggested taking him off lamictal immediately, and putting him on a new med zonisamide or I call it Z. It will take up to 4 weeks to get up to full dose, with room to increase it. She also wanted him to get a couple blood draws 1 to check his levels from being on meds the other is for genetic testing. She is also wondering if he has Doose Syndrome. We won't know until we have the results from the genetic testing. We had his blood drawn on January 18, he handled it pretty well, mainly cried. Dan held him and I had to help hold his arm straight. He might not do so well the next time we need to have them drawn, hopefully that's not for awhile. We got the 1st results back and everything looks good, his vitamin D is low so just need to get him on a multi-vitamin. We won't have the genetic testing results for a few weeks.
Currently nights are pretty rough, he has 7-13 grand mal seizures, while he is sleeping, they start sometimes after he's only been a sleep for 30 minutes. They go from being 2 minutes to 3 hours apart and each one lasts 1-2 minutes. He's finally able to fall into a deep sleep around 9:30 am and sleeps for 3-4 hours. During the day we have noticed the atonic, and tonic seizures have slowed down little, enough to notice anyways. The grand mals are effecting him, its hard for him to walk up right, its like he doesn't have any muscle tone or coordination. When he first wakes up it is hard for him to talk or get the right words sometimes. It's also effecting his hand coordination. We are hoping once we get these grand mals under control that everything will come back to him.
We are very grateful for everyone's thoughts, prayers, love, and service towards Teydon and all of us. There may not be a lot of changes but when there are I will update his blog.