Well, we made it 1 year seizure free since the last one in November of 2016. Only 1 seizure in about 4 1/2 years!! We are so grateful for that. I do admit that fear of one sneaking in while his is sleeping is huge. We still use his bed monitor and he has the embrace watch. The watch he wears during the day to school and if he goes where we will not be present. The last seizure, as well as the first seizures he ever had were fever related. With the flu bad this year I worried about him getting a fever and it spiking before we became aware. The seizures are caused by rapid increase in the temperature, not how high it goes. His fever was only 100.7 when he had his first seizure. I found a device that he can wear to measure his temperature and alert at the first sign of a fever and spikes. It is placed under his arm and he hasn't complained about it being uncomfortable yet. He actually wore it to soccer practice and didn't even notice it. Fortunately, he hasn't caught anything so we haven't been able to test if it really works. We can report to anyone interested in a product like this what we experience. We really appreciate all our followers and supporters. There are so many families just beginning this journey or still struggling with it. We hope that with the walk we hold every year that we can provide assistance like we received in the beginning. Thank you from the bottom of our hearts!
Raise Awareness. Epilepsy Matters.
Service Dog Update:
Pursuing a service dog has been an emotional roller coaster for us from the beginning. From not being accepted from the first organization to having to wait over a year to find out if we would receive one. During the waiting period, our prayers were answered and JW's seizures have been absent. We have done a lot of fund raising so we could be ready to provide the funds for a dog when the time came to be placed with one. With JW not having seizures, it will be very difficult to train the dog and would basically become just a well trained family dog. We received our acceptance letter and our family has discussed our options intently and came to a decision and asked that we not receive the dog at this time but to be left on the list in the event that the seizures come back. Cares has been great with helping us come to this decision and we will continue to be at the top of the list. If we decide to go with a dog, we would not be on the waiting list, but placed in the next class available. We felt that these dogs are trained for a specific purpose and for us to obtain the dog as a family dog that would take that opportunity away from another family. There is a great deal of work that goes into a service dog and we are very willing to go the distance, if the need for the dog arises again. However, at this time in our lives the dog is not needed. We greatly appreciate everyone's support and donations and if the need arises, we will still have everything in place ready to go. Next fall we have an EEG scheduled to see what his activity is doing and discuss taking him off meds. We will stay on the list a great period after the test and med decision is made. And honestly, I hope the need never arises!!!
So we have quite a bit to update on. First, on February 18 we celebrated JW being 6 months seizure free!! Also, he has had only 1 seizure since our trip to Cleveland last year! We are so thankful that we are in a better place now and we pray that it will continue!!
While we are very thankful and are fully enjoying his seizure free days it has been a struggle to get his behavior under control which is most likely due to the medicine he has to take. Last summer he was very aggressive, withdrawn and seemed almost depressed at times. He was not enjoying life like a 5 year old should and we have had to add supplements to counteract the side effects. Joe and I know that right now he needs this medicine because it is the only thing proven to keep the seizures away at this time. We do cringe at the side effects we have seen take place in JW and we will travel back to Cleveland at the end of March to have a 3 hr EEG and MRI done. The EEG will check for any seizure activity. JW has always shown abnormal activity on EEG's, even before medicine. The MRI will check to see if he has scar tissue. If so, we are under the impression that there is nothing we will be able to do about it medical wise, and we will continue on as we have been trying to prevent any more seizures. If he doesn't, then the possibility of him out growing the seizures is greater and that would be awesome.
We are still pursuing a service dog for him. We are still on the waiting list at CARES Inc. It takes a very long time to train a dog as they train it to the needs requested. I did speak with CARES today and the wait when we applied last May was 12-18 months. She expects us to be in training with a dog by October and possibly June. That is very exciting and overwhelming. Having a service dog will be a big adjustment as we will have to reinforce training daily with it. I have spoken with CARES about JW's seizure activity and our hopefulness of him not having seizures and we can use this dog in any way we want. If the need for a seizure response dog is not there because he is not having seizures, we can still use it as a therapy do to help him deal with the side effects from the medicine or trips to the hospitals or if he is having seizure activity but no seizure the dog can be very comforting for him. We did raise enough money for the dog at last year's walk so we will be ready when we get the letter!
JW's Walk this year is March 22. The focus of this year's walk is not on raising funds but RAISING AWARENESS. Chances are you know someone else besides JW that has epilepsy, take a look at the statistics below:
Please join us in Manhattan on March 22 to RAISE AWARENESSS!! Remember to get your registration in by March 1 and if you need more time please email me. We don't want anyone to not come because of finances!!!
The reality is, epilepsy is a guessing game. Scar tissue or not, he has a history of seizures and epilepsy and the seizures coming back will always remain a possibility. JW has gone as long as a year and half between seizures, so we really can't let our guard down, but we can appreciate what we have right now. He is doing well in school, is very social, active and has more happy days than grumpy. We continue to take it one day at a time and appreciate all the support we have from our friends and family!! So many of you helped us get to this place and we thank you from the bottom of our hearts!!
I had posted on JW's facebook page awhile ago that we struck out with his neurologist. Very disappointing to say the least, especially after rereading my post from our first visit with her. We visited with JW's pediatrician and she has referred us to another neurologist in Wichita and we are working on getting an appointment for next month.
This month we are raising as much awareness as we can. JW took it upon himself to ask his teacher if he could teach his friends about epilepsy. We were so proud he did this on his own and thankful that his teacher supported him and helped educate his class. Today he took his wristbands to school to hand out to his friends and it was so neat to watch him do that.
JW has had only 1 seizure that we know of since March 2, 2013. We are very blessed and thankful for this. This time last year, JW's seizures were increasing and becoming more complex. We have since changed treatment and found relief from seizures but are still adjusting to the side effects from the medicine. Because he is not currently having seizures some wonder why we still put so much into posting and fund raising and sharing and talking, etc. The reason is simply this, THERE IS NO CURE. No he is not having seizures now, but they can come back at anytime. It could be tomorrow, next week, 2 years, 10 years. Epilepsy is unpredictable. We also have many new friends that are not so fortunate right now. Last week a little girl's parents were almost forced with the decision to put their daughter in an induced coma to give her a break from her seizures. Just 3 days ago, another little boy had a seizure over 2 hours long and still hasn't recovered. Another friend was feeling some relief that the seizures were subsiding until her little boy had another one last night. These stories happen daily and they can happen to anyone at anytime. Families are faced with so many things and sometimes all at once. They deal with coping with seizures (before, during and after), the horrible side effects from medication, hospitalizations, financial burdens, brain surgery and unfortunately death. So we will continue to raise awareness until a cure is found and we hope that you will join us in that mission too!
JW is about a month into going to kindergarten. He LOVES it. The school is awesome and so is his teacher, they are on board with us and are supportive of all we ask. School has been an adjustment for JW though. He will fall asleep about once a week and sleep through dinner and then sleep all night too :) He is learning so much and it is really fun to work with him on his site words and see that he can read words now! His aggression has improved and he doesn't seem so withdrawn. We do see anger daily, it is not as physical as before. His attention is what we notice the most now. He is having trouble focusing at home on tasks and it is also showing this at school. We do have a follow up appointment with his neurologist next month and will see if we can do some adjusting to help this or if we will just have to find ways to deal with it. We will update again after the appointment. Thank you for your continued support!
Well, our appointment with the new neurologist was bittersweet today. After waiting an hour for our appointment, she spent over an hour and a half giving us her undivided attention and was the most knowledgeable neurologist I have met with the most professional attitude! Going over patient history she discussed every test JW had and explained the results and compared them. We now have a better understanding of everything. Unfortunately, here comes the bitter part. I have asked every neurologist this and she is the only one that has given us a direct answer and thorough explanation. I asked about the scar tissue, which she explained the exact location of it, and said that it was caused by the prolonged seizure. Therefore, since JW's first seizure was an atypical febrile seizure (lasted 8 minutes and most are 30 sec to 1 minute), he should have been prescribed diastat. His next seizure was 30 minutes long and caused the scar tissue which in turn has caused epilepsy. As parents this was hard to swallow because we were told he just had febrile seizures and they were common and he will most likely grow out of them by age 5. Now, since he didn't get the proper treatment from the beginning he has scar tissue that will never go away and developed epilepsy. He will never "grow out of it" as we had still recently been told he may have a chance. On the plus side of things she is adjusting his dosage of Keppra and said that it is possible for him to go a year or two or even more without having a seizure with proper medication, but will probably have breakthrough ones at some point. That would be due to trigger factors, him growing and adjusting medicine and so on. So far we are happy with this Dr. and we will stay proactive on keeping them controlled. He can go to school play sports (except football) and do boy things like we have always hoped. We will just always have to lookout for a seizure and be prepared as they can be so unpredictable. Because of the unpredictability of them we are relieved to be of the wait list for a service dog and can't thank all of our supporters enough for helping us raise the money. We didn't know all the risks in the beginning and were not given all the proper information and now we spend hours researching everything. We hope you will share JW's story because knowledge is everything. That is the reason we are open about JW's story, in hopes to connect to others and help in any way possible.
We are officially on a wait list with CARES, Inc. out of Concordia, KS. This is exciting for us as they are only a couple of hours away from us. Our wait is going to be 12-18 months, but the outcome will be a fully trained seizure service dog. JW and I will have to travel and stay for at least a week after placement to train with the dog and for JW to learn how to handle the dog. By then JW will be 6 years old and should be able to handle it. They are very accommodating in the fact that it doesn't matter how many seizures or how often JW's seizures are, he still gets the same dog he is on the wait for. Thank you to everyone that has supported and helped with our fundraising, so far, we have enough money for the dog from CARES, Inc. when it will be placed with us. We are still working on the medical bills and if the seizures and emergency hospital trips stay away, we can put a dent in those too. Thank you everyone!!
Well, yesterday marked 3 months seizure free for JW!!! Very exciting!! He is also doing better with the side effects. We have decreased his dosages slightly and have seen an improvement restlessness, aggressiveness and his personality! He is becoming quite the comedian that he used to be. So far the lower dose is still covering the activity and no seizures. He still has some major mood swings, gets mad and sad easily and has trouble paying attention sometimes. But these are not as frequent as before. He would have up to 5 major meltdowns a day and now it is about every other day. So big improvement for us and hopefully it will continue.
We have applied to another organization for a service dog, however they require reference letters and it took awhile to get them sent from our doctors. Hopefully we will know if they will accept us in the next week or two.
We will be switching neurologists again :( After two appointments with them, they called and needed some test results that we thought they had and would need to have in order to treat him correctly. Our last visit they wanted to add another medicine and we are really glad we went with our guts on refusing it, especially since they didn't have all the information they should have to prescribe it. They also tried to lower the dosage of his diastat and when I contacted Cleveland to double check, we realized they were not working with them. We also had the correct dosage and in the event of a seizure the new lower dose most likely would not stop it. It is sad and very frustrating that we have to find another and double and triple check everything, but that is what we will do until we find the right neurologist. We have a call in to our pediatrician for a referral to another and hope this one will work out.
Thank you again for all your support and we will keep you updated!
We are still seizure free and going on one month and two weeks!!! JW is somewhat adjusting to the medicine. His aggression is not as bad since starting B6 and being on it over a month now. We are working on ways to get him to settle down. It's like he can't lay still to nap or rest. He's ok to skip a few naps, but when he goes a week, he begins to have many meltdowns and is very emotional. When he gets the proper rest then he does really well.
We met with a new neurologist today and kind of have mixed feelings. He went over everything from Cleveland and felt that the report and images from Cleveland show scar tissue on the left side of his brain. We may never know if this was something that happened during development in the womb or if the seizures caused it. He does feel that the scar tissue is causing the seizures as well. The PET scan from Cleveland showed abnormal activity on both sides of the brain and so did the EEG. So with those findings and that fact that the Trileptal didn't work he agreed that Keppra was a good medicine to try. Trileptal is used to treat focal epilepsy and Keppra is used to treat generalized epilepsy. Also, he made point for us to not hesitate to use the diastat as to not let seizures go too long and add increase the scar tissue. These things we already knew from Cleveland and since JW is still seizure free (YEAH!!!!), I am not sure we will know if this neurologist is a good fit. Unfortunately, when there are problems that is when you seem to find out. But, he did seem proactive and if seizures return was open to discussing other options and not waste time. That is a big plus for us as was him telling us he could still outgrow them. As long as there is a chance, there is hope and we will fight!
We are optimistic and have another follow up appointment in 2 months. So here's to no seizures for the next two months. . . and forever!!
We are back in Kansas and getting settled in. JW had an MRI, PET scan and video EEG monitoring for 7 days. The MRI was abnormal but that was due to the fact that he had a seizure prior to it. There still is a possibility he may have a small amount of scar tissue, but to be sure, they would need to do a biopsy and that would be too invasive to do for how small it could be right now. Him having the seizure right before the MRI is what is making it hard to tell, we can do another MRI in a year and if there are more changes then we would have an answer as well. The diagnosis right now is generalized epilepsy and they based this off of the electrical activity shown on his EEG. He does have complex partial seizures (generally classified as focal epilepsy) and tonic clonics (generally classified as generalized epilepsy so this is not a definite diagnosis. The activity showed up all over his brain, meaning that the seizures could start at an given point the brain and with his history, they can stay in that area or move all over the brain. Since he didn't have a seizure, they do not have the information to confirm where the seizures start and spread to. This is beyond everyone's control and we can't have him produce a seizure when we need it. We agreed to treat him with the current diagnosis and that meant changing his medicine to Keppra which is used for generalized epilepsy. The Tripletpal is generally used for focal epilepsy and that is what could have been causing his seizures to increase. We are going to give this a try and if his seizures do not get better, then we would go back for another EEG study. That is an important piece of information they need. Unfortunately, we can't keep him in the hospital long enough to catch one right now and we don't want to. So if they get to be a frequency of 1 per week again, then we would go back and see what changes need to be made. We still need to use a neurologist locally as they feel the distance is too great to treat on a regular basis. They will however work with whomever we choose and pass this information and plan along to them to follow. So our next step is to find a neurologist (again) close by that is willing to work with Cleveland. We are also still waiting on the genetic testing results that we did before going. The results would not be a game changer on diagnosis, but could narrow the gap of finding the type of epilepsy he has. The treatment would still be the same as long as it was working. We do not have to restrict him from anything specific, just take caution with certain activities and an extra close eye while swimming. Joe and I feel very grateful that we were able to take JW to the Cleveland Clinic. We feel that we are in a much better place and our intuition was right, he was not being treated correctly. We are on the right track and narrowing the gap of all the possible types and treatments. We could not have made the trip without the generous donations made by our friends and family. Thank you all so much for your support!