April 7, 2010

People keep asking me how Jaden is doing. It has reminded me that I should write some notes on her so I can keep it all straight when she goes in for her doctor appointments.

She is starting to have "mini" seizures. I made that name up. We call them mini because she starts to have the onset of a seizure, but it goes away. I'm not sure what is worse though an actual seizure or a mini seizure. I say this because with an actual seizure she goes completely unconscious during the seizure. She doesn't really have any memory of it. With a "mini" seizure she has the same initial reaction at the start of a seizure. If sleeping she wakes up abruptly, scampers to me, grabs her stomach, and has like a panic attack. She panics crying,"seizure, seizure." You can't calm her. She panics for about 30 seconds. It's so sad. Her heart rate races just like it does in a full seizure. I'm sure medically these are better than a full blown seizure, but I think they are worse for her because she's aware the whole time. I read once a post on an epilepsy thread. It was an adult that was explaining the aura feeling in the stomach that happens right before a seizure. She said that it is the most frightening thing, so much so that they can't describe the fear. She said when this happens to her, her spouse would reassure and promise that he would let nothing bad happen. She said that it didn't help because no one can understand the fear that takes place. She said it's almost like being attacked by evil spirits. She said it's a strange sensation that happens in the stomach and works it's way up to your head. I feel so bad for Jaden because she acts just like that lady described. She starts by grabbing her stomach yelling tummy seizure. She is scared to death. She grabs on to you. It's like she can't hug you tight enough and she's panicking the whole time.

So that is the latest. She is having a mini seizure almost every night. Some nights 2 or 3 times. Usually right after she falls asleep. She has had a couple in the evenings before bed.

3 seizures last night 1-7-10

Jaden had 3 seizures last night. These are her first since late October. It's been so nice to not have her having any. Hopefully, it won't start up regularly again. 

Sam happened to be sleeping with us too. The one at 4:00 woke him up. He said, "Mom, why do Jaden's seizures have to be so loud? She woke me up!" It was really cute because he was still half asleep.

Daily dose of medicine

Wednesday, December 9, 2009

This is 1/2 of Jaden's daily dose of medicine. She takes this amount every morning and every night. She is such a good little pill popper. It's kinda scary! Sometimes she will beg me to let her swallow ALL of them at once. Sometimes I let her, but usually I divide it into 3 times. It makes me too nervous to have her swallowing that much at once. 

As for an update, she is doing so WELL! She is closer to normal than she has ever been since she started having seizures. I have to laugh and say that sometimes normal to us is probably a little skewed since we are so used to her. However, she is doing really good. I don't have an explanation for it. My gut tells me that it is because of the two medications. Not directly because of the meds, but if she were to have an EEG done right now, I wonder if she would have little or no seizure activity going on in her brain. It's that "abnormal" brain activity that causes her "receptors" to not work. In the past, when they have done an EEG she shows seizure activity 24 hours a day. There is always seizing going on in her brain and when it builds up bigger it becomes a full blown seizure that we see. She has not had a seizure since the end of October. This is above average for her. Her "normal" is 2-3 seizures a month. My feeling is that the combination of the 2 meds is doing the job in supressing her seizures.

Ron and I really struggle with medication. We have never wanted her on any, but we have had to comply. We have also tried every alternative/homeopathic/cookoo crazy way out there. You name it and I swear we have tried it. Even the lady that swings her rock and talks to Jaden's spirit LOL.  Sometimes I wonder what Heavenly Father thinks about how we react. He knows everything. When Jaden was 2 years old (23 months to be exact), she had her first seizure. It took us 3 weeks to figure out what was going on. She would put her hands in her mouth and scream. She would scream for 30 seconds and then resume whatever it was that she was doing. She would scream so loud that at first I thought she got stung by a bee. Then I thought she was teething. Her two year molars were poking through her gums. Over the three weeks, her seizures increased. It got to the point that it was happening every hour like clock work. I remember calling Ron at work and telling him something wasn't right. It was happening like clock work. It was exactly every 55 min. He cancelled his patients for the day and we took her to the hospital. Then it started happening every 15 min. The ER doctors didn't recognize it as seizures. They didn't know what was going on so they started with the routine tests. After they did a catscan we were walking down the hall back to our room. I was carrying her and telling her that she did such a good job. I kissed her cheek and then realized that she seemed like she was in a stare. She wasn't acknowledging me. I told Ron. He clapped his hands right in front of her face. She didn't blink. She was  non responsive. I panicked and told Ron to hurry and get the nurse. The nurse came running into the room. By this time, Jaden's lips were turning blue and she was starting to vomit. The nurse quickly grabbed an oxygen mask off the wall and a vomit aspirator. She said to me, "She is definitely having a seizure". The nurse hit an emergency button and called for the Dr. They took her from me and laid her on the table. She still hadn't blinked. Within in minutes they had her hooked up to all of these cords which I am now very familiar with (EEG). They told us that she was in nonconvulsive status epilepticus which meant that she was in a seizure that wouldn't stop. The EEG tech told them to page the neurologist. The nurse came back and said he is just finishing up in his clinic. He wants to know if he can finish and then come over. The tech said no, tell him to get here ASAP. I was terrified. She was still laying there in a stare. They brought a strobe light in and placed it about 2 feet above her head. I couldn't look directly at it because it hurt my eyes. She was still staring without blinking and it was right in front of her face. This seizure went on for about 45 min. The first question I asked the Neurologist was if she would have brain damage. He explained seizures to me and comforted me in telling me that she was going to be just fine. I have learned over the years that seizures aren't really harmful, they are just a physical road block in a person's life. Anyway, it all worked out. She was fine. A week later she was released from the hospital. We were taking her home and going to have to give her medication 3 times a day, everyday. That was detrimental to us. I rarely ever gave my kids an antibiotic, partly because I can't remember to give them medicine for 10 days straight and now I was in a position where I had to do it everyday indefinitely. For Ron, he is way into health and nutrition. We were both convinced that we could find a way to "heal" her. We've spent the last 4 years trying so many alternative things. We stayed compliant with the medical doctors and kept her on her meds. Everything, medicine, cookoo rock swinging ladies, herbs, allergy treatments, irodology, special diets, etc, work for a time, but then everything always quits working too. In April of 2008 when she was hospitalized I felt defeated. I was no longer willing to try anything else. However, I was still persistent with Drs. that we be as conservative as possible with medication. At this last hospitalization, I asked if she could be weaned off the last med she was on since it obviously quit working. They told me that if I really wanted to then they would see after a little time had passed, but that they really felt like it was time to try 2 meds on her. I asked how the one could possibly help since she seemed to become immune to it. They explained to me that each seizure med has a different working mechanism in the brain. Kind of like tylenol and ibuprofen. They are both for pain, but they work differently in the body. Their hope was that between the two meds it would be enough to suppress the seizures. And so for now it's all this medicine that I feel like is helping her right now. The very thing that I've tried so hard to avoid. So I have to ask myself, why? If I had to do over again, I would do the exact same things over again. Nothing worked, but at least I have the peace of mind that I have tried. Heavenly Father knew that none of this would work. He could heal her. He could allow it to work, but he hasn't. He knows how much we hate medication and yet our daughter owns shares in the pharmacy or at least she should. lol. So I have to ask myself, What am I suppose to learn from all of this? We all know that our trials are to teach us. I don't know for sure what I am intended to learn, but what I have learned is:

patience

love

compassion

and 

I think the most important is the ability to be less judgemental. 

I have a greater acceptance of people. When there is a problem whether it be medical or behavior related I no longer have an opinion on what the person or parent should be doing. I realize that medical problems, naughty toddlers, rebellious teenagers are all part of Heavenly Father's plan. It's all part of why we are here. It's part of the refiner's fire. Heavenly Father could fix it all, but he doesn't. It makes us stronger, better people. And so for whatever reason Jaden and Ron and I needed to learn something from this. It's all part of our being worthy to return to Heavenly Father. And right now, it's all good...

Test Results

Test Results 

Oh how I wish that I could keep up with everything. I need to update on Jaden's testing in SLC and yet she's moved onto another phase and so this is all irrelevant. But for history's sake, here it goes anyway. The bottom line of her testing is that she was diagnosed with

Secondary ADHD

 

What this means is that she has ADHD, but it is called secondary because it is being caused by another medical problem. It's not something that she would have otherwise. The abnormal brain activity (seizure activity) that she has in her frontal lobe causes receptors to be non existent or not work at all. In the frontal lobe of an ADHD child the receptors also don't exist or work.  We were given two choices:

1) treat the behavior with adhd medication

-or-

2) leave it be

The consequences of treating the behavior are that ADHD meds lower the seizure threshold. So in other words, if she takes ADHD medication then she will have more seizures. At that point, I was willing to deal with more seizures if the behavior could be controlled more. Ron on the other hand was not hip at all on giving her medication for ADHD. We had time to think about it because they wanted me to make an appointment with her pediatrician and if we decided to medicate then they wanted him to be the prescriber for her ADHD meds.

Another Trip to SLC

Monday, November 23, 2009

Another trip to SLC

On November 3, Jaden and I flew back down to SLC for the neuropsych testing. We were in Utah for a week. It went by way too fast. Of course, 2 days were traveling days and 2 days were full of Drs. appointments and testing. We flew down on Wed. Then on Thursday she had an appointment at the psychology department at Primary Children's. Her appointment was at 9:00 a.m. It ended that day at 6:30 p.m. It was so long. Then on Saturday morning I drove down to St. George to see my family down there. We went down on Saturday and came back on Sunday. It was a very quick trip and I didn't get to see as many people as I had hoped to. Kim was having a boutique sale and so we went down to help out and see her. She makes baby bows and hats. They are so stinkin cute. I didn't pay much attention to it before because I don't have anymore baby girls. However, after seeing them in person, I purchased lots of bows for Jaden and a hat. Check out her stuff. They are super cute and inexpensive.

www.babyflowerpatch.blogspot.com

These are the lamest pictures, but they are literally the only pictures taken on our trip. I look ticked. I think we were talking about the *itch that lives in Kim's housing development. She was a bitty. lol We were setting up for Kim's boutique fair. It turned out really cute. 

(I will post more about the details of the Drs. visits and test. It's too much to explain in this post.)

Your daughter qualifies for.....

Monday, November 23, 2009

Your daughter qualifies for......

Special Ed. Those are bittersweet words. I was so happy to hear them and almost as quick as I was excited my heart sank and I had to fight back tears. Because it was being confirmed to me that she was not normal like other kids her age. I knew that. I didn't need anyone to tell me that, but yet the confirmation of it was still a little painful even though it was good news. 

Jaden's teacher pushed really hard with the school to get them to do an evaluation on Jaden. I had to meet with the principal, the director of special ed for the entire district, the special ed teacher at Jaden's school, and the school psychologist. I had to answer many long questionnaires that were annoying like those personality tests. Each meeting was ultimately to discuss the "bad" behavior that my daughter portrayed. It was so not fun. I wish I could control my emotions more because too often in those meetings I couldn't hold back a slight tear or my eyes I could tell were watery. I didn't like that. I think I like control too much and that was out of my control.

The principal and head of special ed for the district both told me when they met with me (individually) that most likely Jaden wouldn't qualify for special ed. They explained that epilepsy alone doesn't qualify a child for it and that because the teacher is pushing for this they are going to go ahead and evaluate her, but not to get my hopes up. They also told me that it would take 30 days to complete the evaluation. Well, within 5 days they called me in to meet with everyone that I had been meeting with individually. It was a group meeting and they said, Mrs. Taylor we have unanimously agreed that Jaden does qualify for special ed. She needs a  1 on 1 right away. We will post for the position today. They also told me that they have never qualified a child that quickly, but that it didn't take long observing her to tell that she needed full time assistance. If you're wondering what she is like, the best way I describe her to all the many Drs. that I see and have to tell each of them what she is like is this: "Imagine putting a 2 or 3 year old in a first grade classroom and expecting them to act like the rest of the 1st graders. It's impossible. She acts identical to a 2 or 3 year old. She can't sit at her desk for more than a few minutes before she is wandering the room. Then when asked to return to her desk she ignores you. Then when you walk towards her to redirect her back to her desk she laughs and runs away and makes you chase her, even if that means chasing her down the hall until you catch up to her. She requires redirection every few minutes. She is happy, she's laughing all the time, she squeals when you try to change what she's doing." That is Jaden. A 2 year old's behavior in the body and mind of a 6 year old.

So within a day the school had hired a 1 on 1 for Jaden. That made my life so much easier. I'm not spending my days at the school anymore. She has an IEP. She will have 1 on 1 reading lessons in the regular classroom. She will go to the special ed room for a 1 on 1 math lesson. And the rest of her lessons will be with the normal class with her aid with her at all times to assist in keeping her focused. I am so thankful the school has programs to help with her. It has made a tremendous difference for all of us.

I am way behind on updates, so I am posting events in the order that they all happened till I'm caught up to date:) This event took place at the end of October.

Do you ever wonder?

Thursday, October 15, 2009

Do you ever wonder?

I had to take a questionnaire from the school psychologist. One of the questions was....My child is enjoyable to be around. You answer with 

1-not true ever 

2-sometimes true and 

3-always true. 

I was teary eyed having to answer with a 1. She's not enjoyable. She's a pain in the butt. I know that is cruel, but it takes such a toll on you when it is every waking moment. I think I need to pray for patience and the ability to love her more. 

Do you ever wonder why we go through what we go through? Why do I have a child that is so "not normal" that she's not enjoyable to be around and is a challenge all the time. It doesn't matter that it's not her fault. She has intractable epilepsy (uncontrolled seizures). The location of her seizures are in the frontal lobe which effect her behavior. That doesn't make it any easier to deal with the behavior. Why does Travis have an absolutely sweet, sweet little girl that is such a pleasure to be around that everyone wants to have her around and yet she is suffering so severely that the parents want her to move on to the next life instead of continuing to endure her pain and suffering.  www.prayforari.blogspot.com

*************************************************************

I decided that it was very necessary for me to go to www.lds.org and look for some answers. I know I know the answers, but at the same time I need reassurance. 

Elder Quintin L. Cook, quorum of the twelve apostles:

We resonate with the Prophet Joseph’s petition after he had been falsely accused and imprisoned in Liberty Jail for months: “O God, where art thou? And where is the pavilion that covereth thy hiding place?”

The Lord’s answer is reassuring:

“My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment;

“And then, if thou endure it well, God shall exalt thee on high.”

Elder Quintin L. Cook also said,

"This life is not always easy, nor was it meant to be; it is a time of testing and proving."

I guess that is an answer to my question...Do you ever wonder?

Back Home

Tuesday, October 13, 2009

Back home

We got home October 2. We have to go back down to SLC on November 5. She has an appointment to have more testing done. This time to try and figure out the behavior issues. She is going to have neuropsychometric testing done. I wish I could report good things, but the only good thing is that she is having less seizures (only 4 this past week). However, the behavior is completely out of control. I've been reading on the epilepsy website that kids on 2 or more medications are very likely to have bad behavior. In addition to articles that state this, there are forums where parents have posted stories. Jaden seems to be acting exactly like the rest in her situation. However, even if there is a reason, it does not make it any easier on us or her teacher. She is so bad that last week her first week back, I had to go to school all day with her. She needs a 1 on 1. I haven't had to go this week because the school has assigned her a 1 on 1. Most of the time she just will not focus on any structured thing. She takes the same amount of time to do two math problems while the rest of the class finishes the whole page. That is with me sitting there helping her, but she won't stay focused. You have to redirect her every few seconds. So in addition to the bad behavior she is completely side tracked all the time. She is getting more violent too. She hits me all the time when I'm making her do things she doesn't want to do....like getting dressed for school or having her hair combed. Today when I picked her up she was in the principals office because she scratched her teacher really bad and spit on her. She is just as bad at home as she is at school, unless she is occupied doing what she wants to do. If you try to get her to sit down for dinner or prayers she freaks out and runs away from you and tries hitting you.

********************************************************************

The Neurologist's N.P. just called. She has been more helpful than any Dr. I've ever talked to. She is the one that arranged for Jaden to have neuropsychometric testing done. She is going to talk with the neuropsychologist and the neurologist. I told her I was so frustrated and because the behavior part was so naughty I wonder if she is just a little terd. She said, "No, I'm really sorry, but I think it is because of the location and type of seizures that she has. It is very common to act like this with these seizures. This is the worst kind to have because of their location. Most of our behavior problem patients have these type/location of seizures." Again, glad there is a reason, but it doesn't make it any easier.

Sunday Update

Sunday update

It's so hard to get back into the blogging world, especially when I'm not at home at my own computer. I'm still in Utah with Jaden. She had blood work done on Friday. This was to check her depakote levels. One of the new drugs she is on can affect her liver and so she will have to have blood work done every 6 months. This first blood level was to see what level the depakote is at in her blood. She has an appointment on Monday with the Neurologists again. She is still having quite a few seizures. At least one a day. It's so depressing. She's on so much medication. I don't know what else to do for her. She will have one more appointment on Thursday and then on Friday we finally get to come home. Jaden, Sam, and I are all so excited to get home. We can't wait.

Wednesday Update

Wednesday, September 16, 2009

Wednesday update

Jaden is doing so much better. Yesterday her seizures were down to 35. Then today they dropped all the way down to 2. We are pretty sure that they are going to release her tomorrow. We will have to come back next week for some follow up appointments. She is going to be on 2 meds this time. She's always been on only one. The neurologist said that she hopefully will do better being on two meds because they all work differently in the body.

I have to make a decision. It's been suggested to possibly try the ketogenic diet with her. It's a very restrictive diet and to some degree dangerous. You have to have weekly contact with adietitian. Anyway, lots of components to doing the diet. Jaden's neurologist had suggested it as an option as she is running out of med options. However, the neurologist that is on call right now who has been treating Jaden isn't as hip on doing the diet. She has suggested we wait and see how she does being on 2 meds. I have to decide soon because that will determine how long I have to be down here. If we do the ketogenic diet it will be about a 3 week process before we could go home.

For updates on Ari please visit a blog that Liz started for her. It ishttp://www.prayforari.blogspot.com/. Haley is posting on it now. I would like everyone to hear from her on Ari's updates.

Pictures in the hospital

Monday, September 14, 2009

Pics in the hospital

Our visitors are related to both families. Me and Travis of course are brother and sister. Our spouses Ron and Haley are 1st cousins. Their moms are sisters.

My sister n law, Haley came downstairs for a few minutes to visit Jaden.
My niece, Ari. She is on the 4th floor and we are on the second.

Ari and Haley in their room.

My Mom, Ron's Aunt Danne, Jaden, Ron's Mom Penny, Ron's Aunt Lorri who is also Haley's Mom, Ron's sister Becky, and Ron's cousin Amber.

MIL-Penny, Becky, Amber

My sister n law Amber and Jaden

My brother Travis, my Mom, and my brother Jake

My sister Jaymi, her son Krew, and Sam

Monday's seizure update

Monday's seizure update

We made it to SLC about 9:30 p.m. Sunday. We ate dinner in the cafeteria with my Mom, brother Jake, snl Amber, sister Jaymi, and my brother Travis. After dinner we said goodnight to everyone. My sister Jaymi took Sam for me. Jake and Amber went home, Travis went up to his daughter's room and Jaden, my Mom and I went to the Emergency dept. By about 2:00 a.m. we were admitted and in our room.

Jaden had 75 seizures yesterday. Today she has had 62 so far. They are real short, but they are persistant. She is on her meds she was on + dilantin and depakote. The dilantin is used on her only in the hospital and the depakote will be her new med. I'm not sure if they will keep her on both or wean her off her old med.

It has been fun being with all the family. We got to take Jaden up to Ari's room tonight. We've recieved lots of visitors from our family and Ron and Haley's family. (Ron and Haley are cousins. Their Moms are sisters) Everyone on both sides knows both patients. It's been an eventful day. It's so nice to be with so much family.

Family Reunion at Primary Children's Hospital

Saturday, September 12, 2009

I guess it's a family reunion at Primary Children's Hospital

Update on Jaden:
We are headed to SLC to Primary. The Neurologists tried treating her with 2 different prescriptions that they called in for her yesterday. They gave her 2 drugs that they would usually give to her first thing when she gets to the hospital. They were hopeful that it would be enough to stop her seizures. Unfortunately, it didn't work and in order to give her more she has to have blood levels drawn. It did slow her seizures down to 5 sec. seizures. She is having them every 5-15 min. Yesterday they were 1 1/2 min. long and still every 5-15 min. So at least they are very short seizures now. She has to be hospitalized to be given stronger meds to stop her seizures. They wanted me to take her to the Ketchikan Hospital. I told them I didn't want to because she would be transported to Seattle. Ketchikan doesn't have an inhouse lab so they can't treat her with seizure meds. They don't have the ability to test her blood levels quick enough which is why they transported her last time to Seattle. That was such a nightmare last time. I don't want to go through that again, so we are leaving for Salt Lake in the morning.

Update on Arianna:
Her kidney's, pituatary gland, and heart are improving. Unfortunately, the liver and spleen are getting worse. They are very enlarged and still struggling. She's back to getting blood and platelet transfusions everyday for the last two days. Her sodium level keeps spiking up and down too. The metobalic problem is still unsolved. They haven't figured that out. I just got off the phone with Travis. He is so positive despite the situation. He said the Drs. wanted him and Haley to get counseling. Travis asked why. They said because parents need to be prepared in situations like this. We don't want them to blame themselves or the Drs if things get worse. Travis said, oh well in that case we are fine. We don't need counseling. The Dr. said, well that's what were concerned about. We don't think you guys realize the severity of Arianna's situation. You are both always so happy and Travis you are always cracking jokes and making all the nurses and Drs. laugh. Travis said, If you are asking me if I understand that my daughter is fighting all odds of living, yes we understand that, but do you understand that we have two choices. 1) be pessimistic and sad or 2) be optimistic and happy. Which one do think is going to be the best for Arianna.....to see us crying and upset or to see us happy. The Dr. said well that makes me feel better. We were just afraid that you were too positive because you didn't understand how bad off she is. We've just never met anyone this upbeat in a situation like this. Travis said, well you've just met Travis and Haley Lane. That's what I love about Travis. He is always positive. He lights the room up when he walks in. Everyone always wants to be in his presence. One of the nurses told him after the Dr. left that the nurses all "fight" over who gets Arianna's room.

Friday 9-11-09

Jaden has tail spinned into another one of her episodes. Only this time, what usually takes about 2 months to progress to has taken only 2 days. 3 days ago she wasn't having any seizures during the day. 2 days ago she started having them every 2-3 hours. Yesterday it increased to every hour in the beginning of the day. By afternoon, it was every 1/2 hour. By night, it was 10-15 min. Between midnight and 3:00 am it was every 8-10 min. We ended up giving her diastat at 3 am. It's an emergency medicine that is injected rectally. It is used for cluster seizures (which is what she was doing) and for seizures that last more than 10 min. After the diastat she slept until 6 am without a seizure. Then she had one again at 7 am. After that they have continued like clock work every 20-30 min. I called her neurologists yesterday. I had to leave a message for the Drs. I hadn't heard back so I called again at 7 am. The receptionist said they would flag the message as an emergency and have the Dr. call me back. It's now 10:00. I still haven't heard from them.

When it Rains it Pours

Friday, September 11, 2009

When it rains it pours

As for Arianna she had 2 really good days. The last 2 days she didn't have to have a blood transfusion or a platelet transfusion. Mom and Travis said that her countenance was so much better. She was smiling, laughing, and talking. She got to talk to her brothers and sisters over skype. They were all so happy. Last night she had a bad night. Travis said she was in a lot of pain and didn't sleep well. She had to have a blood transfusion and a platelet transfusion this morning. Hopefully, this will just be a little dip in her recovery. The last 2 days have been so promising.

Jaden has tail spinned into another one of her episodes. Only this time, what usually takes about 2 months to progress to has taken only 2 days. 3 days ago she wasn't having any seizures during the day. 2 days ago she started having them every 2-3 hours. Yesterday it increased to every hour in the beginning of the day. By afternoon, it was every 1/2 hour. By night, it was 10-15 min. Between midnight and 3:00 am it was every 8-10 min. We ended up giving her diastat at 3 am. It's an emergency medicine that is injected rectally. It is used for cluster seizures (which is what she was doing) and for seizures that last more than 10 min. After the diastat she slept until 6 am without a seizure. Then she had one again at 7 am. After that they have continued like clock work every 20-30 min. I called her neurologists yesterday. I had to leave a message for the Drs. I hadn't heard back so I called again at 7 am. The receptionist said they would flag the message as an emergency and have the Dr. call me back. It's now 10:00. I still haven't heard from them.

Seizures increasing

Jaden had 3 seizures Sunday night. That was out of character, but then she went and had 4 seizures Monday night. Then she had one Tuesday evening at 6:00. Then last night she had 6 seizures. When she woke up for school she told me she didn't want to go to school because she felt like she was going to have a seizure. I let her stay home since she had had 6 during the night. Well, she's had 7 more today and it's only 4:30. It's a good thing I didn't send her to school. I'm not sure what's going on.

Update on Jaden for August

We went on our trip from Aug. 10th-29th. I didn't keep exact dates on her seizures. I only kept track of how many. She had 6 while we were on our trip. Since returning she has started having more again. We met with her neurologists at Primary Children's Hospital. They are going to discuss our options and get back to us with a game plan.

Seizure last night at 3:30 a.m.

Seizure Thursday 5:30 a.m.

2 seizures

Tuesday, August 4th

7:00 evening

1:00 a.m.

Jaden had 2 seizures today. I just returned from YC. I was gone for a week. There could possibly be some missed medicine doses that could have contributed to that. I'm glad that I'm as strict as I am about not leaving her alone in the bathtub. Her and Jake had been playing outside in the sprinklers. They came inside and wanted to warm up in a hot bath. I told Jake they could take a bath, but if he got out he absolutely had to make her get out. He asked if he had to get out if she got out. I told him no. I emphasized that she would drown if she had a seizure in the bathtub and she was alone. Well, when Jake got out she didn't want to, so he said he was "mean" to her and insisted that she get out. She ended up having a seizure on the bathroom floor. It's amazing how even at a young age the rest of the kids learn how to deal with medical issues. I was very proud of Jake. He stayed with her, helped her up when she was done and then came and told us. 

2 seizures this morning so far:

8:15 a.m.

10:40 a.m.

She started physical therapy last week. I've noticed HUGE improvements on her behavior. She has been so normal acting and so sweet lately. However, it seems that the seizure numbers have increased since she's had cranial therapy. I guess we'll watch it out see how it goes. I'm really happy with behavior improvements. Cranial work is used a lot on kids with ADD and ADHD. In fact, one of the school teachers was telling me about it because they had a student with ADHD that had huge improvements with it. 

Anyway, it's always a little discouraging with epilepsy because there are never any answers. It doesn't matter who you see. Aside from the medical definition of what a seizure is and what takes place in the brain when there is a seizure, nobody has any answers. So we will just keep trying new things like we've always done.