Bad days vs blessed days

It's crazy how when you have a bad day it seems like everything goes wrong and is super stressful. On good days it seems like you get all the blessing and good days. Today was a better day. Emotions were better and Teydon is doing better! We heard him laugh more this afternoon than in a long time! It was a bust a gut, can't stop laugh! Absolutely LOVE his laugh and smile! It amazing what no grand mals does for him! Today's blessings were words of encouragement, money blessings, and the pharmacy called and told me that the bottle that his new med comes in is bigger and can't be separated into smaller bottles so we got a 3 months supply for $60! I could've used at least one good news yesterday, it would've helped me feel better. Though it is hard, I need to remember the blessings we have received, that we receive daily cause we are so very blessed. We will start the new med in the morning and he'll be done with depakote a week from Tuesday. We definitely know that depakote was the cause of a bunch of his problems, bad side effects from it. This new med Banzel is used for Lennox Syndrome so we're being hopeful! Thank you for your prayers, they were answered! So grateful for my Heavenly Father and the love he has for me and the blessings that he gives me despite my "bad days"!

We're on a roller coaster ride and it's not a fun one

Teydon was doing REALLY GOOD! His drops and absence had decreased in number and severity and he had gone almost a week without ANY grand mals! Between last night and just now with taking a nap he has had 5 grand mals, all while asleep. I want to wake him up so he doesn't have anymore but he's so exhausted from all the grand mals. The poor kiddo needs sleep! We are having a hard time getting insurance to approve his new medication, we've been trying since Monday to get and still haven't got it! I'm really nervous that we are starting into another "January" and I'm really stressing out about it. We have no idea where this came from, we cant think of any triggers, we've been strict on the schedule and he was doing so good!! We're trying to be positive and remember the good days he has been having but to be honest it's hard! I feel like the good days just tease me and make me want them even more cause it shows me how life could be!! I can't wait until we he off of this roller coaster ride, it's not fun! Please add him to your prayers that this can just be a fluke deal and not an everyday thing again. Thank you everyone for all of your love, support, thoughts, and prayers! You all hold a special place in our hearts!

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!

Genetic Testing

The doctor called me this mourning with Teydon's genetic test results, they came back clear! Teydon does not have doose syndrome! She said we could go other testing but usually insurance doesn't pay for those. We don't feel that there is any other testing we need to do. We are grateful that the results came back clear. Gives us hope that he can still grow out of these seizures. At the same time it would've kinda been nice to have a reason for the seizures, nothing we can do about it.

Seizure update, excluding today, the last couple mornings seizures haven't started until 7:30ish in the morning and he only has 2-3 each morning. He would then sleep until 10:30 so we've been having some late mornings. This morning he was awake for the day at 7:30 so he didn't have any seizures last night! Wahoo! Now if I can just get him to sleep through the night without having bad dreams or getting cold we'll be good! We are thinking as long as he gets to bed early and sleeps fairly well we might start getting him up at 7:30 and hopefully skip seizures all together! It's hard to have a set schedule when his seizures keep changing all the time, we just go about our day one minute at a time lol.

I'm very grateful for the change we have seen in Teydon, so much better than he was, it was scary there for awhile. At the same time it's hard to get super excited about it cause he's done this before has been good for 1-2 weeks and then it's like his body builds up an immunity to the medications and they stop working and seizures start up again. It's a roller coaster ride that's not very fun.  We just take it one day at a time and hope for the best! Today is a good day!! Thank you all again for your prayers and thoughts towards us and Tough Teydon!

Better but not great

I knew I shouldn't havr bragged about Teydon not having any seizures, seems like it always back fires when we talk about how good he's doing. He's not having a lot but is still having 1-3, which is so much better than 17 and we've seen major improvements on getting his personality back so I am super grateful that things are better. Now if we can just get them to stop completely and not come back it'll be great. We are going to increase his zonisamide again and hopefully that will take care of these last few.
 One of the seizures he had last night was weird, he was sitting up while convulsing, everytime I laid him back down he would try to sit back up. After it was over he was wide eyed and acting like he was wide awake but was staring off at the same time. If I wasn't used to grand mals it would've been kinda freaky, though it was still a little weird. Dan said he did that with him over the weekend. Not sure what's going on with those.
A happy note Teydon and Dan went skiing last night with ward ski night. Teydon did really good, it was rough at first he was being stubborn and wouldn't even try but with some coaxing and putting the tether thingy (I'm a boarder so don't now ski stuff lol) on the front of the skis, he was a pro. It was so good to see him be capable of doing it, a couple weeks ago it wasn't even a possibility. So grateful for little improvements!!

Wahoo

Great news!! Teydon didn't have any grand mals last night!!! Wahoo! Happy dance!! He did have 4-6 tonic seizures, arms and legs would go stiff but they only lasted 10 seconds! Thank you, thank you for all of your prayers! They are being answered!! We are hoping it continues but still taking it one day at a time. We are very grateful for the good days we get! We have also been able to see more of our Teydon's personality again! We've missed it so much! Teydon also is not having any day time seizures, he doesn't have to wear his helmet anymore atleast when we know he's having a good day. We continue to hope and pray things continue to go good.

Another challenge that we've over come is taking meds, his new meds are in pill form and taking 5 now. At first we were opening them up and dumping the medication on a spoonful of yogurt which worked when we only had one pill, once it increased it was hard to get him to take it, we tried mixing it a couple different ways but it was a constant fight, especially when he was on lorazepam it was horrible! We had to pretty much force all of his meds down, poor guy hope he doesn't remember very much of that! But now we have him swallowing all 5 pills like a big boy! It took me forever to be able to swallow pills, my mom jokes Teydon is doing it 10 years earlier than his mom. I'm very glad he didn't get that trait of mine or life would be pretty miserable for him. We are very proud of him! It's so cute, he will smile once he finally gets it swallowed, thinks he's pretty cool that he can swallow pills! He tells Boden all about it! I think it's pretty cool he can do it too!

January was a really really really hard, challenging month. It was a bad nightmare that hopefully we never have to do again! But we held on through the storm, not by ourselves but with the help of so many people holding us up! I would not have been able to make it through this without my amazing husband, super mom, awesome dad and step mom, our amazing ward family and bishopric, family members, neighbors, and friends! We will never be able to repay you all for your service to us! My heart is very full of love and gratitude for everyone in our lives! I know it's not a lot but THANK YOU for everything! I owe all of my thanks to my Heavenly Father and my savior Jesus Christ, they have blessed me with strength, hope, happiness, and all of you! So grateful for my knowledge of them in my life!

Ups and downs

We're on a roller coaster ride right now having good nights and bad nights. Every other day is a good day, Monday night he only had 2 seizures, last night he had 7. They didn't start until 330 so at least we were able to sleep until then. He was up at 8 am so they are not affecting him nearly as bad, lessening them I'm sure helps. I emailed his doctor to see if we should continue to increase zonisamide, we will see what she says.
We have been able to see more of our Teydon the last couple days. We even celebrated his 6th birthday on Monday, he got spoiled and we had a lot of fun having a little party, celebrating with grandparents. We are hopeful that the results we are seeing are from his new meds and hope it continues to work.

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.