Schedule and meds

After receiving his diagnosis we tried upping depakote to see if that would help with his seizures, it didn't help and we felt like it was causing him to be in a zombie state so we are in the process of taking him off of it. We are going to add Banzel once his off of depakote or at least down a lot, depends on seizure activity. Banzel and depakote can have a reaction with each other so we have to get him off D first. It will take us 4 more weeks to be off depakote, it's such a long process getting on and getting off a drug! Banzel is used a lot with helping treat Lennox syndrome (LGS info) so we are being hopeful it will help him! That is nice thing with having a diagnosis his treatment can be directed better.

We have read that being on a sleep schedule can help with the seizures. W have been trying it out for a couple weeks now and have noticed that it helps. Last week was a busy week for us and if he was even a half hour to 45 mins off schedule he would have a grand mal that next morning and have rough days. Yesterday he took a nap, he hasn't had a nap in a week so thought it would be good for him to get one in see if it would help, he ended up taking too long of a nap and didn't wake up until 4. It through his schedule off and this morning he had 2 grand mals 2 hours apart. He had gone 3 days without a grand mal and had a really good day yesterday! His schedule is super important to stick too. It's hard, it makes us having to leave parties early and him missing out on something like fireworks but in the end it is worth it. To see him have a good day, being able to be alert, to play, smile, and seeing the brightness in his eyes makes it so worth it! We have also added a herbal, sleepy tea to help him settle down and fall asleep, it is helping him immensely! He would take him 30 mins to an hour to fall asleep once laying down, he would toss and turn and talk. With the sleepy tea he's usually asleep within 15 minutes! It's all just trial an error and figuring out what works for him and also us to stick to his schedule.

We ask that you will add to your prayers for him, that while switching meds around he can still have some seizure control and they not go out of control until we get Banzel started. Thank you for your love, prayers, and support for us and especially for Teydon! Everyone is so good with him it makes this Mommas heart full and happy, THANK YOU!!

EEG results

The dr called me Tuesday morning with Teydons EEG results. He was positive for Lennox gastaut syndrome. It didn't really surprise me he has too many signs for it to not be but we were holding on to hope that he didn't have it. We will continue the same treatment we've been doing and exploring other treatments. We are on the waiting list for the nurse practitioner/dietitian to get an appointment to find out more on the ketogenic diet. Knowing with Lennox that it's hard to control with meds we will most likely go on the diet and see if that helps. We've increased depakote again but haven't had an results from it yet. Please continue to add him to your prayers, he is still having bad days, especially today. We continue to hope and pray things get better for him! Thank you all for your continued love, support, and prayers!

EEG and schooling

Teydon had an EEG this morning, we are checking to see if he has Lennox Gastaut syndrome or not. I felt so bad for him, he could only sleep for 6 hours and had to be woken up at 4 in the morning. He was so sleepy! Only took him 5 minutes to fall asleep once they were finished hooking him up to the EEG. The test only took 10 minutes once he was asleep, he was having so many seizures that they were able to get enough information in just a short time. Not really the best thing but made the test shorter. We were told it would take 20-45 minutes. 10 minutes did not make for a very long nap. We will have the results back by Monday or Tuesday.

Teydon is still have around 20 drops a day, some lasting a split second, others a minute with disorientation afterwards. He's having 1-2 grand mals a week they happen in early morning non during the day. And all day long absence, where he zones out and doesn't really respond for a few seconds. Just spend a few minutes with him and you'll see them. Things are better than in January, we figure he had around 150 grand mals in a 3 week period, plus all his drops on top of that. Some days are better than others, worse when he's had a grand mal. Its a constant worry and watching over him. We truly believe he was sent to us for a reason, he needed us to watch over and take care of him. We love the little moments when we get to see his smile and hear his laughter!

Schooling update. We met with Teydon's team on May 19. There were 9 people including Dan and I. We met with them for 1.5 hours discussing Teydon's seizures, his mentality, and his needs with seizures and schooling. We left feeling very good about things. He has a lot of people looking out for him. The plan for now is he will go to kindergarten in the fall, he will go for an hour or two early for speech therapy and extra teaching to help him learn things he misses out on when he's having his absence seizures. They were very understanding and willing to work things out with us.
 They scheduled to have some testing done, cognitive, motor skills, and communication. We had his cognitive testing last week and he didn't do very good, it was a rough day for this momma. The tester said he couldn't give him a score because of all his seizures, it wasn't a fair test to test  Teydon's IQ. It was so hard to watch and to hear. I knew he was struggling but it was so much harder, as his mom, to be told he pretty much didn't score. Broke my heart!! At the same time it was good to have a professional see how much Teydon is struggling to help get us the help that we need for him. The tester said that maybe a life skills class would be better for him. More one on one attention and help. Which I have been wondering if it would be better for him, right now anyways, instead of a regular class room. They can't just put him in the life skills without having the testing done. They are going to retest him middle of August before school and see where he is at, if anything changes seizure wise. We also will reconvene with his team before school starts to discuss any changes and final preparations.
Things are definitely going a lot better than last year. I've come to the conclusion, for whatever reason, he wasn't suppose to go to kindergarten last year, maybe because Januray was going to be so rough he wouldn't have been able to attend school at all, who knows. Things are working out for next year so we are working on that now. We are so grateful for answered prayers in getting us some help with his schooling.

Thank you all for your continued love, concern, and support! We are going to do a fast for him this Sunday, June 4, if anyone would like to join us!