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.