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!

Update

Here it is almost a month since my last update, crazy how fast time goes by! Not doing so good with more regular updates but at the same time not a lot has changed.

He is still having 6-10 drops a day and poor kiddo keeps getting injured. What doesn't kill you makes you stronger right :)! Yesterday he hit his nose on his knee causing it to bleed like crazy and then at dinner smacked his head on the table. He's such a tough little guy! Unfortunately I'm getting a little immune to the drops, meaning they don't seem to be as stressful to deal with. I know it's because of so many prayers, begging for the strength and patient to deal with them! Heavenly Father answers prayers and is mindful of our needs! For whatever reason this trial is not supposed to pass us yet so all we can do is embrace it, continue to move forward and find the joy in each day!

We have Teydon up to the dosing of the new med that the dr. wanted him to get to since Friday we hope to be seeing some results from that within the next week or so. If not we will probably increase it some more. We will be taking Teydon in sometime this week to get blood drawn and test his levels. Wish us luck!! I'm afraid this time won't go as well where now he knows what is going to happen. Gonna have to do some major bribing! Please pray that his levels will be ok and that the depakote isn't causing any damage. Thank you!

School update. We talked with a friend last night about Teydon's situation. She knows the principle at birch creek and she gave him a call today to kinda help explain Teydon's situation better. Be our advocate that we're not making this up lol. The principal called Dan today and talked to him about Teydon and some options. The principle is setting up a meeting sometime this month with him, teacher(s), the school nurse, and us to put together a plan for Teydon's schooling and needs. It is such a relief to finally be heard and getting some good direction! We are going to do some kindergarten assessments and see where Teydon is at academically for either kindergarten or 1st grade. We fel a lot  better about things after having talked to our friend and to hear from the principle. So grateful for all the prayers and all the help we continue to receive from so many people. We are truly blessed!

Struggles with Epilepsy

A much needed update, I will try to do better!

Some things have gotten better, others worse. He is not having anymore grand mals during the night, early morning, unless he stays up too late then he has a grand mal. No late nights for him! He is back to having 6-10 drops throughout the day. He had one while waiting for an Easter egg hunt to start and hit his head on the road, he hit a rock and it cut his head. A couple other times he has scrapped his back on something. The poor, little, boys back is going to have so many scars. He needs to live in a bubble. When we leave the house he'll either need to wear a helmet again or a hat, unless someone is holding onto him. I've decided that i hate drop seizures just as much as grand mals! Grand mals are scarier hard to watch but the drops injury him and affect normal activities. On March 31st he had a doctors appointment to see what we need to do next to see if we can get these drops under control more. We are going to add depakote, we've tried to stay away from this med because of possible side effects (liver and bone marrow damage) but from here on out anything else we try has side effects :( We've tried all the other ones that don't. We haven't started it yet, needing to adjust other meds first. Please keep him your prayers that he doesn't get and side effects from it. He will get blood draws ever 6 months to monitor everything. He is going to be one tough cookie by the time he is 8! He already swallows 7 pills like a pro (not all at once but 2-3 at a time!) and is gonna have to learn to like needles, unfortunately.
We have noticed problems with his focus and concentration, we wondered if it was ADD or ADHD but felt it was more than that. You don't notice it unless your asking him something or really paying attention. We asked the doctor and she did a couple little tests on him, thankfully he did what we've been seeing. She said she doesn't think it's add either she thinks (about 90% sure) that they are little seizures kinda like absence seizures (staring off into space) but not full on she called them "spells". The seizures are interrupting what the brain is supposed to normally do. She's hoping meds will get control of those too. We are dealing with some brain damage caused from so many seizures and the seizures themself. His speech has also been affected when saying a sentence he slurs all his words together except the last word it is clear as can be. We are looking into options to get him some help with this.
My heart breaks for my little boy!!! It's really hard when I think of everything all together! It's hard for us to accept and realize he has a disability more than just seizures. He was a perfect healthy baby and toddler (minus irregular heart beats right after being born, he was fine at a 2 week EKG) he was growing and developing perfectly until 2.5 years old and things seem like they have gone down hill from there. :( Sometimes I think it would've been easy quicker to accept if he had been born with problems but for whatever reasons, unknown to me, things have happened like this.
We are also struggling with knowing what to do and getting him in the right place with school. It's a fight getting him the right help that he needs. We're working with the school district and trying to explain everything the best that we can over the phone or via email. One day I talked to 6 different people trying to get in touch with the right person to help us! He will most likely be taking kindergarten again or put in a specialty class, not real sure at this point. I do a little but of school here and there nothing formal but it's been really hard with his focus. As his mom it's hard to have the patience and I don't have the know how on how to help him with his special needs. ( I know why I've been putting this post on hold, I can't stop crying as I type this!!!) It frustrates me to not be able to help him! I need to do more research on how to help him or take classes or something! Hopefully we can get schooling figured out and that will help both of us!
Last night we came across Lennox Gastaut Sydrome, I've seen it before on epilepsy websites but no doctor has ever brought it up so just figured he didn't have it. With new struggles that are showing up and more and more different types of seizures, it's a possibility he may have this. We have just been talking  to the doctor today about it so we will see what needs to be done to rule out or confirm it. It would be nice to have an explanation for all this and maybe qualify him for more help but at the same time I don't want him to have a syndrome. I haven't done much research on this but what I read last night it is something that he would most likely have for the rest of his life.
Enough sad stuff! When we went down to his appointment it was at 12:40 and after it we had some places to go to while we were down in the slc area so ended up spending the whole day down there with just us and Teydon. It's much easier to leave Boden with a sitter and he's not nearly as bored. It was nice to spend time with just Teydon! Despite his challenges and set backs he still finds a way to put a smile on his face, to have fun, eat a huge hamburger, and put a smile on our faces! Dan and I both had the same feelings about our day and cherish the time we have with him and both our boys!
Life is a struggle and hard but it also has so many many blessings also! Life is good, we have each other and so many other amazing people!

Team Teydon update!

I've been thinking that I need to update the blog and keep forgetting so here it finally is! Life is getting back to normal, probably why I haven't posted in awhile. Teydon had been doing really good, especially since Feb. 13. Still having good and some bad days, but the bad days are atill manageable and a lot better than in January. He will go 1-2 days without having any seizures at all, night or day! Other days he'll have 1 grand mal or he has started to have drop and tonic seizures (arms and legs go stiff) again during the day but he still only has 1 or 2 of those and they don't last nearly as long as they have in the past. Some days he is more emotional, moody than others but for the most part we have seen a lot more of Teydon's true personality! We are loving having him back! There are some things he is still struggling with; (they are much much better but still not 100%) balance, thinking, learning, focus, and comprehending. He may need some therapy, extra help we're looking into it.

 We're not sure if it's his age or if it's because his body still doesn't feel the greatest, he doesn't really like to play aggressively like wrestling, being tickled, or touched he says it hurts. He will let me give him kisses so I'll take it! I'm sure a lot of it is his body still adjusting to everything and could very well be more sensitive to certain things. We just keep being patient and having to change the way we do some things with him.

We have started up homeschooling again, nothing fancy just reading and some math, which he seems to be taking a liking to math. He will work on some math on the starfall app that is 1-2 grade math, I don't know that he fully understands it but at least he's interested. Sometimes we struggle against each other with doing school work so we may be looking into different options for school next year. But for now we are still taking it one day at a time and just loving and enjoying life the best that we can!

Thank you all for your continued prayers, love, and service towards us. None of it goes unnoticed!

Hate this roller coaster ride sometimes

It always comes back and bites me in the butt when I talk about how good Teydon is doing. We can never figure out these seizures, we think we have them under control and then they switch on us, either different types or having them at different times. He had 3 from 5:30-8:30, woke up with an upset stomach, threw up, and then had a seizure at 10 while awake, he took a 3 hr nap and then had another seizure at 3 also while he was awake. Just when it gets bearable and less stressful things change. Today is a bad day. Hard to hold on during hard days, especially when you get use to having good days. We were loving not having to worry about him during the day. Hopefully tomorrow will be a better day. We're nervous that his body is getting used to zonisamide and not working as well, like I was talking about in my last post. Days like today are so hard, is it tomorrow yet? I know you all are and I'm grateful for it but I ask if you will continue to pray for my little guy. Thank you!