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:
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...
