Dakota has kept us busy this week. We saw a neurosurgeon on Monday for possible VNS surgery (vagus nerve stimulator). We have decided to schedule this surgery for sometime in August. This will give us a month to see if the change in his keto ratio helps and to hopefully try CBD oil. Tuesday he had his first day of summer school, PT, then his neuro follow up here in Maine. He is officially off depakote with no increase in seizure activity. We agreed to keep him on Dilantin as it seemed to really break the clusters he was having in the hospital. We also received a call from GI with the results from the video capsule endoscopy. They saw some small ulcers and inflammation which are signs of chrons disease. We have started him on a medicine to help with the healing process and will check blood protein and stool in 3 weeks. If the numbers are going in the right direction then he will go on a maintenance medicine to help with chrons. This is hopefully our answer to his retching episodes, weight loss, protein loss and anemia. Today(Wednesday) he had his follow up eye check. We have been noticing his left eye wandering more since we left the hospital and have been worried there might be damage from all the seizures. We got good news that nothing has really changed since his last apt. His alignment is still off but the doc wont do surgery until seizures are controlled, he's near sighted in both eyes more so in the left and a little bit of vision lost which could have been from the seizures. He's going to go down to Boston to have a test done that will give us an idea of what his vision is. After that long visit we went to his first music class (thanks to the Robbie foundation). He loved it! Although he had a dozen seizures while there he was none stop smiling.
Seeing how its November which is Epilepsy awareness month and Dakota is on his final wean off his last antiepileptic medicine I figured this would be the perfect time to update you all on his seizures. Back in May Dakota was admitted to the epilepsy monitoring unit at Barbara Bush Children's Hospital. When he was admitted he was on 3 antiepileptic medicine as well as the Ketogenic Diet and was having at least 6 seizures a day. During the 2 days he was there he was weaned off of Depakote completely, started his wean off of Phenobarbital and was hooked up to the eeg. The seizure activity that the brain showed and Dakota's physical reaction didn't match a specific seizure type. The doctor called them "Dakota seizures" Which of course the doctor thought was cool while our frustration just got worse! Weaning off of Depakote can be hard for some people. Thankfully Dakota had no problem. We didn't see an increase in seizures or any sign that he had grown dependent to it. Phenobarbital can also be a hard one to wean off of so we did a very slow wean over the course of 2 months. Although his seizures increased some he did very well with the wean. We started to see more of Dakota instead the "drugged" Dakota. He was happy and more awake. We took the seizure increase over putting him back on any medicine. In August his seizures were a little crazy (had 283) but we he also had a very busy month. We started to notice that his seizures can sometimes be brought on by stress. So on days that we did a lot or took a lot out of him he had more.
In August we saw his neurologist here in Maine and also the Ketogenic Clinic in Boston. My goal for Dakota was to get him off as many meds as we could without harming him. Most of his seizures are very quick only lasting maybe 15-20 seconds, of course we worry what those 20 seconds are doing to his brain but the positives outweigh the negative. We discussed with both doctors 3 different routes. There is the VNS which has always been in the back of our heads. We personally know people that have the VNS and it has done wonders for them but we still aren't set on it. We were referred to the surgeon that would do the surgery just incase we decided to go that route. The second route of course is to try different antiepileptic medicine, which of course if we had to we would. The third isn't truly an option quiet yet as it hasn't been approved by the FDA. Again these are all just options for us and when the time comes we would do whatever was in the best interest of Dakota. We've been told that because of Dakota's uncontrollable epilepsy he is at risk for SUDEP (Sudden Unexpected Death in Epilepsy). Our hearts sank when we heard these words come from the doctors mouth.
As I said Dakota is also on the Ketogenic Diet which has helped in some ways. Dakota had is normal blood and urine draws in August and we found out that he was at risk for kidney stones which can happen with the diet. So we couldn't go to much higher with the ratio. We hope he gets better results this month so we can increase and see if his seizure count will go down.
In September his count went down to 250 for the month. He had started back at school as a kindergartener which meant full days. School saw a huge difference in him and was so happy to see him more alert and engaged. Some of his seizures were strong but when he came out of them he would go right back to playing/working. We felt pretty comfortable with where we were at. I had put a call into his neurologist for more refills on his last medicine. When they called back I wasn't expecting what they were about to tell me. We had the go ahead to wean off the medicine(Onfi)!!! So the following week we started the wean. He has done ok not as great as we had hoped but we are still going through with it. Some of his seizures are getting stronger but he's still having the small 15-20 second ones as well. Besides the strength he hasn't had an increase in amount which is great. His total for October was 251. We met with the Keto clinic last week and even though they don't like the numbers they feel that if the seizures aren't taken away from his day then that's ok. They are hoping to increase his ratio once they get his lab results and hopefully that will help decrease the numbers. Dakota also has to have an ultrasound done on his kidneys just to make sure everything his going ok.
I wonder often if we are doing the right thing. Even more so on days that he has bad ones. To see his face go from happy to panic/scared in a matter of seconds is the worst.
Every year his seizure count goes up. He was 9 months old when he had his first seizure. The following 3 years we didn't keep track as well as we do know. He would have a week or two where he would be seizure free. In 2011 we started to log every seizure he had even if it was questionable. ( I honestly don't know why we didn't do it before then) So here are the yearly counts up to today 2011- 139, 2012-218, 2013 so far- 1484.
As of today Dakota is no longer on any seizure medicines. His last dose of Onfi was Saturday night and although we have seen a slight increase in strength we are going to give this about week to really see how he does without any thing in his body besides the Ketogenic diet. I hope to update you all next week with how this is going so keep an eye open.
Dakota has been settling into full day kindergarten better then we all thought he would. There are days when he is exhausted by the time he gets home but nothing a small nap wont help. He leaves the house around 7:30 in the morning for his hour commute and is home around 3:45. Pretty soon the Morrison Center will be opening their new location in Wells which will drop that hour commute to a 1/2 hour. We can't wait for this. We are starting to hear some different sounds from Dakota. A couple weeks ago school heard him say HI! The day after that I woke up to him saying MMMUUMMM over the monitor; I ran right into his room so he knew that what he said meant something. We have been trying to get him to say mom FOREVER, his very first nurse set a goal for Dakota to say mom every mothers day but that day came and went every year and we never heard it. So to hear it just once melted my heart. We've also been hearing what sounds like no and some other sounds.
Our first annual Golf for Dakota Scramble went pretty good for our first year. We had 10 golfers and they had a great time. I'm not a golfer and don't know much about the sport so I got to learn some things during this event. We are hoping to get this event to grow every year.
The fall festivities have begun in our house; Apple picking, fairs, and evening bike rides/walks without it being to hot. Dakota loves being outdoors and this is the perfect weather to get him out. We took part in the first Robbie Foundation 5k/walk a couple weeks ago. Dakota ran some of it in his wheelchair and loved it. The Robbie Foundation has helped us provide hippotherapy and an Ipad for Dakota and we are very thankful for them.
This past weekend we attended the Abilities Expo in Boston. This was our first one and plan to go every year. We saw lots of great things. We got to try some wheelchair accessible vans to see which would better fit our lifestyle. Dakota tried out a fleece wrap/jacket (i'm going to try and make this) and a rain jacket. There were switches and toys from enabling devices that both Dakota and Silas loved. We tried out the joggers, the sleep safe bed, carseats, and a walker. Came home with lots of information as well.
Today Dakota got a hoyer lift. He's a growing boy and soon enough he will be to heavy/tall to transfer him from things. This lift will help us out more so down the road then right now but having a nursing agency involved we needed to get it. They require us to have one if the kiddo is over 50 lbs. He is 43lbs right now so we figured it was a good time to get it. I know this will save our backs in the future but having it in the house opens a new chapter.
Sorry for the not keeping up with the blog. This month has been very busy. Dakota finished summer school, he had his communication eval which went great. We will continue to work towards the eye gaze system with him as well as making choices with the switches. We went on our annual family camping trip and had a blast! Dakota truly loves the outdoors. We also had our benefit yard sale for Dakota and Silas.
This month has been full of doctor appointments as well. We saw the physiatrist and she gave me the choice of putting cast on Dakota again or going right to botox to help with his muscle tightness in his legs/ankles. I chose to give casting a try again and if it doesn't make a huge difference then we will try the botox. He had his follow up with Dr. Murray for his tonsil surgery and botox. He recovered from the surgery just fine; We knew he would. we will continue with the botox every 3 months as we have seen a difference in his secretions. He had a 24 hour EEG done at home. We should have results from that this week.
Monday we went down to Boston Children's for Dakota's Ketogenic routine follow up. The doctor was pretty close to being on time which never happens. While the nurse was getting his measurements and weight she had asked me how his seizures have been. I told her she was not going to like the numbers but to keep in mind that more then half of them are small ones that don't bother Dakota. I gave her June(141) and July's(196) numbers and then started to count the total so far for August. When i got to 200 i took a deep breath and continued to count, the final count was 237 and we weren't even done with the day! It killed me to hear that number come out of my mouth. I have to remember that Dakota's quality of life is more important then any numbers. That we have our son and he is thriving off all those nasty drugs. That most of his seizures are small and don't effect him as much as the drugs would. He's able to come out of them on his own and go back to playing. Thankfully his doctors agree with us. We did talk about maybe increasing the only seizure med he is on(onfi) or adding a new one but that we could stop it if we thought it was holding Dakota back. The doctor was happy to see how alert Dakota was, so besides the seizure count he had a pretty good appointment. After this we headed down to get his cast off! He had them on again for 10 days and did great. He hates the sound and feeling when they saw them off so he was upset for a little while. Plus I'm sure it feels weird. We finished our visit off with some blood work and then headed home.
Today he got some new night braces called ultra flex. He doesn't seem to mind them. We are trying them out tonight and has done ok so far. He also had his eye check up. He goes every 6 months now which means he's not getting worse. The doctor said his alignment seems to be better which we have noticed and his tear ducts seem to be open still. His optic nerve looks good but he is still near sighted. He did say that glasses may be in his future but not yet.
Friday he sees the geneticist for his yearly routine follow up. We do have some questions for her and can't wait to get them answered. That has been our month like I said very busy. I've also been planning our first Golf scramble to help raise money for the wheelchair van. We are still taking registrations and sponsors/donations. If you are interested please let us know. All are tax deductible.
Dakota started his communication eval yesterday at school. They were using the switch for him to activate when he wanted more. I can't tell you how amazed I was with how well he was doing. I always hear about it but have never seen it myself. We are trying to get a switch for home. They are pricey but we will firgure it out. He has his second part next Thursday where they will try the eye gaze with him. I'm really interested in how he will do with this.
Today Dakota had his neurology appt. As you all know his seizures haven't decreased since we took him off some meds back in May. He had a slight increase last week which we feel was due to the stress his body was under. He is back to his normal daily numbers. The doctor talked about adding a new med. At this point we don't feel that its the best choice. Everyone has seen a huge change in Dakota. We are seeing lots of smiles, he's sitting for longer periods and tolerating therapies, he's also been more vocal. Adding a new med we could loose all of that again. Thankfully the doctor agreed. When we last checked his levels his phenobarbital wasn't even at a theraputic level. We have been slowly weaning it and tonight was his last dose. So as of right now for seizure control he is on one med and the keto diet. His doctor has referred us to see someone that specializes with the VNS(Vagus nerve stimulation) to decide if that will be the next step for Dakota. Right now he has uncontrollable epilepsy due to his gene mutation and we don't know if we will ever be able to control it. All we can do is be positive and thankful
As for his recovery he his doing great! He's even gone without his binky since last Thursday.
Our 31 calendar raffle is coming to an end. Don't forget to purchase your tickets.
Please spread the word about our Golf for Dakota Tournament in September.
Hope that everyone is enjoying there summer!
Dakota has been doing very well! During summer break he got to try out some standers. First he tried the Bantam easy stand. We love the concept of it but Dakota didn't look like he was comfortable. He also tried the Mygo stander by lecky, we are 90% sure this is the one we will choose for him. When we first put him in it he didn't complain once! He played with his toys and was stayed in it for about 30 minutes without falling asleep. He got to watch daddy cook while standing and was all smiles! Plus Little brother loved giving him hugs and looking up to him. These are the moments of "normalcy" that we get from equipment that we have to fight the insurance for. With that being said Dakota got denied a new walker because he doesn't exceed the weight limit of his current one. What the insurance doesn't realize is that people can exceed the height limit before the weight. So now we wait to see if they approve the new letter that was sent in.
Dakota has continued with the UEU system at Mainely Kidz every week and has been doing an awesome job with it. His therapist tries to get him to step up and down a step stool. They even had him standing at the table this week.
Dakota is back into hippotherpay (horseback riding) and is enjoying it. When we stopped last October he wasn't really into it and would cry most of the time. The very first day he got back on the horse it was like a completely different child. He was smiling, looking around and just overall happy. He has done some nice sitting and when on his stomach he pushes up. These are all big things for Dakota as it takes a lot of effort on his part to do. He is tired after these sessions and I don't blame him.
He went into his cousins pool . They loved him being in there. We put him in a blowup boat and they would pull him around. I love seeing how they interact with him and how amazed/excited they are with all the new things he is doing.
We brought the boys to see the fireworks and this is the first year Dakota actually payed attention to them. Usually he falls asleep so to see him watch and clap was nice.
This past weekend we went to the beach with some family and his buddy Silas came with us. They had a great time. Silas even went in the ocean for the first time and loved it! Tonight is Special surfer night and all three Amigos will be taking part. We are so glad we gave this try with Dakota and have another chance to do it. Look for some pictures tomorrow!
Dakota goes in for his tonsilotomy and botox on Thursday. Please say an extra prayer for him that day. I promise to keep you all updated throughout the day.
I leave you guys with some work. We have the very first Golf For Dakota Tournament coming up in September and need your help spreading the word. It is going to be a fun filled afternoon and we will have some items to be raffled off. If you register early you could have a chance at winning a free four some for The Ledges Golf Club.
Dakota has had a very busy week. Monday was therapy day at Mainely Kidz in Saco. He typically uses the UEU system but this week he only lasted about 10 minutes. Let me tell you thought those 10 minutes were amazing! He stood perfect by himself, we think this is why he only lasted so long. It takes a lot out of his body to just do that. We tried him on the treadmill with the litegait and he did ok. He did have one of his bigger seizures while “walking” on the treadmill so we had to stop. Overall he did great!
Tuesday we tried something new and out of Dakota’s comfort level. We signed him up for Special Surfer night which is hosted by Aquaholics. We are so grateful for all the volunteers especially the ones that worked with Dakota. At first I thought it was a great idea and everyone told me I was crazy. Once we got to the beach I was so nervous and didn’t think Dakota would like it. Well he proved everyone wrong. The guys that brought him out in the ocean said he didn’t seem to fuss to bad and he was smiling at times. Mommy got a few gray hairs that night but hey that’s what our kids are suppose to do right. We plan on joining with the group next month as well.
Wednesday we went strawberry picking. Dakota loved to squish the strawberries in his hands. He stayed with Nana most of the time while I was off picking but I could hear him laughing across the field. He’s really starting to have a belly laugh and we love it. We picked lots of berries and made some jam when we got home.
Thursday he got to try out a stander. Its called the bantam easy stand. It allows you to go from sitting to standing. This piece of equipment is great. Lots of neat features and we like that if Dakota is having a hard time standing we can easily let him take a break without taking him out of the stander. We are going to try a couple more to see which one fits him best before making a decision.
Hippo therapy started on Friday. When we ended last October he didn’t seem like he was enjoying it, well this time around he was all smiles! His therapist could not get over the change(all due to medicine). He didn’t complain once during the session. We are hoping this will help increase his tone while sitting and help him with walking/standing.
We also had his follow up for the sleep study. So we headed up to Portland to meet Dr. Murray. The study shows Dakota has mild obstructive sleep apnea, meaning at times typically when he's in a deep sleep he oxygen dips down or he stops breathing. He recovers very fast from these episodes but this could be why he doesn’t sleep so well. He goes in for a tonsillotomy which is when they shave down the tonsil to a thin layer. This type of surgery has a faster recovery compared to a tonsillectomy. We maybe looking at a couple days stay compared to a week or two. There's less discomfort as well. While the doctor is in there he's going to see if his adenoids have grown back, if so he will remove those as well. He suggested giving Dakota botox in his salivary glands to lessen the amount of drool. At this point we are willing to give it a try. We have tried medicine to decrease but is hasn't helped as much as we'd like. This surgery is scheduled for July 18th. Not a whole lot of change in seizure activity.
Please take a look at our fundraisers. If we don’t sell enough raffle tickets for the “31” calendar we will continue selling during July and draw winners in August.
We have our first GOLF FOR DAKOTA TOURNAMENT coming up in September. Please spread the word. Your involvement means so much to us. Please help us fund therapies, equipment, trips to Boston children’s and most importantly safe transportation.
Someone graduated from preschool this past week! He is onto bigger and better things! His school held a small ceremony for all the graduates. They had an amazing speaker and the kids got to dance to music after. This is such a milestone for any child but as a child with extra needs it means that much more. It means that they have met all their goals and some; It means that they are thriving! We are so lucky to have the type of school Dakota attends. I can send him to this school and know that he will never be left behind or forgotten. That the teachers/aides/workers go above and beyond to interact with all the kids. When we started looking at preschools it was so hard to imagine him 45 minutes away from us just to attend but to see the progress that he has made is amazing.
Dakota's new float for the lake and pool this summer came in and we gave it a try in the tub. He LOVED it! Honestly this is one of the cheepest "special needs" float that I found and was skeptical about it at first. The picture at the top is him in the tub. He is sitting so well and using his hands to splash his toys. Dakota's sitting is getting better with every med wean but I feel this extra support float did the trick. When he was laying down he was very relaxed too.
Dakota had is dentist visit today and did well. He didn't have any decay just staining, mostly due to his seizure meds. We head down to Boston childrens on Firday to see his orthopedic doctor. He will check his scoliosis and see how well the feet casting went. As far as seizures go he is doing ok. The most that he is having in a day is 10 and they are usually the smaller ones. His total count for May was 141, so far in June he has had 58. This week they have been better with the most in one day being 5. We are continuing with the phenobarbital wean and the next decrease is tomorrow. He will be on this new dose for about 2-3 weeks. After that if his seizures don't get any worse we will stop it completely. If his seizure become worse we will go back up on the phenobarbital. This is all a test to see which medicine is really working.
Make sure to check out our fundraising page! We have the "31" calendar raffle going on right now and you can purchase tickets via pay pal or send check/cash. We also have been busy getting the registrations and flyers finished up for our 1st Annual Golf For Dakota Tournament. If you enjoy golfing or know someone that does please pass the info on.
Dakota has had a great week so far. We were able to have a family day on Friday. We went to the zoo and only lasted about an hour due to the hot weather. Both boys loved it. Sunday he got to go to his buddy Silas’ birthday party over the weekend. It was pretty hot and little brother was not in the best of moods so we had to leave early. He went to school and has done an amazing job!! They are starting to see more of Dakota, he’s doing things he did when he first started there about 2 ½ years ago. He seems to be more focused and very chatty. Most days he doesn’t really want to nap which is a big deal. Yesterday I had to go to his school to get his wheelchair checked out. While the guy was fixing his chair Dakota stared at him and looked like he was trying to figure out what he was doing. I stayed for a little bit and got to see him in circle. He was sitting with no one behind him, ( there were teachers right next to him) and he was doing a great job. At school today he chose his picture and took it off the board without the teacher prompting him and then once his turn was done he tried his hardest to put it back on the board. I wish I could be a fly on the wall all the time. Jordan(Dakota’s little brother) loves his brother. He snuggles with him, sometimes to much and gives him his toys. He is always there when he is upset and is now taking an interest in how we give him his food and meds. He loves to help. Its always fun to watch the two of them but this past week especially has been so touching. With Dakota being more alert and wanting to play due to the decrease in medicine. He is still having seizures and we don’t know what if anything triggers them. We were thinking maybe over stimulation but there doesn’t seem to be a pattern. The past 4 days he has had under 12 which is great because a week ago that’s what he was having. Our hopes is that we can get him off most medicines. We are still weaning off the Phenobarbital and will do this over the next 4 weeks. Then we will see how well he does off that med and if we have to add a new one then we will other wise we will try to wean the last seizure med and see how that goes. He is still on the diet and we will be increasing the ratio soon so that way help him too. His buddy Silas is also weaning off Phenobarbital and has been so vocal and alert like Dakota. It amazes me how much one drug and effect your body.
Just like Dakota, mommy has been busy this week as well making lots of phone calls. Now that we have nice weather and Dakota seems to be somewhat healthier he will be starting back up with his hippo therapy. We really can’t wait to see how well he does and if he has a different reaction then last fall. We got his results from the sleep study and he has obstructive sleep apnea and will be getting his tonsils out in July. We are not sure how his body will react to the procedure so it could go either way. We meet with the doctor that will be doing the surgery on the 21st and will know more then. We have been trying to get his diapers covered by insurance and now that we have the approval they don’t cover the ones Dakota needs. So now we are waiting on samples to see which ones will be best for him. Dakota graduates from Preschool tomorrow! I’m not sure how I feel about this. So many emotions both happy and sad but mostly happy. We have been through a lot these past few years and to see how much he has changed is just amazing.
Don’t forget to check out our fundraising page. Right now we have a 31 calendar raffle fundraiser going on. You can purchase the tickets via paypal. We also have our first annual Golf tournament coming up in September. We will be putting that info up this weekend so make sure to check back and tell all your golfer friends. We continue to sell Dakota’s shirts and still have some bracelets. Just don’t forget that every little donation helps us give Dakota the quality of life he deserves.
Day 1- Dakota had a planned admission this week to monitor his seizures. Before they got him hooked up he had already had 6 seizures (3 while at home). Once we he was hooked up and happy his doctor came in to see us. The plan was to stop his Depakote and lower his phenobarbital which we have been slowly weaning. Dakota had 5 seizures that afternoon/night. He was happy and playing most of the night, which is great.
Day 2- Dakota didn't go to bed until 3am last night! He woke up around 9:20 and had one of his stronger seizures then decided to stay up. The second day wasn't to bad. They collect some blood samples and also did a urine sample. Dakota filled that pee bag like it was his job. He had a total of 10 seizures. I don't know how but he continues to be happy. I would do anything to take away the discomfort.
Day 3- Again he didn't sleep very well. He had the same pattern as the night before. His doctor seems to think it is the environment. The doctor came in to go over the plan. We are going to be weaning Dakota off the phenobarbital over the next 3-4 weeks. This will allow us to get a better understanding of what his new base line is. If his seizures increase dramaticly then we will stop the wean. After we get a feel for the new base line we will decide if we want to add a medicine. His doctor was talking about adding Vimpat, i'm still doing research on it. He is still on onfi and the ketogenic diet. The doctor said its hard to tell what type of seizures he's having. They use to come from one part of the brain (partial) and now they are coming from both sides (generalized). What the eeg shows doesn't match with what his body's physical reaction is. He said that if anything he'd have to say they are close to tonic seizures. If we feel he is doing ok on just the nofi and diet then we can stick with just that. As long as hes not having a 100 seizures a day and isn't in a epileptic status. He is having some seizures that we don't see but they are only seconds long. We were able to go home today! He had a total of 4 seizures for the whole day, which is great! He is also sleeping soundly as I sit here typing.