I am just going to lay it all out there in this post. I am okay with posting all my mistakes as a parent and everything that happened if it helps even just 1 person. My daughter, Kailey, is 8 years old. She was a pretty content baby/toddler. Hardly ever cried or gave me any trouble. I gave her all the typical Gerber baby foods, rice cereal, and formula. She did have breast milk for about 3 months because I had to pump and feed her and after going back to work after 2 months, it was hard to keep up with the pumping at home and at work. To this day I wish I would have tried harder. There were lactation consultants available and I did get a little help when I was in the hospital but didn’t feel like going to see anyone after I was home. I felt like this should happen naturally and was depressed and frustrated that it didn’t. At the time, I didn’t see anything wrong with formula and felt proud that I had pumped for 3 months. Kailey had some asthma during her baby and toddler years. When she would get sick, she would get this wheezing and have to be on the nebulizer. And she had many ear infections. Other than that, she was a pretty healthy kid. Also, she got all the scheduled vaccinations and a flu shot every year until recently (we no longer get the flu shot).
When Kailey was 3, I took her to the dentist for the first time and she wouldn’t let them do anything. They couldn’t even look in her mouth. I felt like it was a total waste of a trip and didn’t bring her back for a while. By the time I did bring her back, she had a mouth full of cavities. By this time we had Tyler, and I admit we neglected Kailey’s teeth after having another child to take care of. We didn’t brush every day and never flossed. And I was giving her those fluoride drops the doctor prescribed. Well one day she got ahold of them and there was no child safety lock on the bottle. She drank probably ¼ of the bottle! I threw it out and stopped giving her fluoride (except what is in our water and toothpaste). We were also really bad about candy. Think about all the holidays there are where candy/treats are involved. It is never just one day out of the year like people say. There are so many days in the year. Between holidays, grandparents, birthdays, friend’s houses, school events, and the treats we liked to have on the weekends, it just became way too much. I feel really horrible about neglecting Kailey’s teeth. I just thought back to my childhood and that I had candy & treats and my teeth turned out okay. Well after seeing several dentists (she had kicked one of the dentists!) and attempting to tackle the cavities two at a time, we ended up having to put her to sleep to get all the work done. When she came out of the anesthesia, I had never heard her scream and act the way that she did. She literally screamed from the top of her lungs as loud and hard as she could. Her face was beet red. It broke my heart. There was nothing I could do. She had to come out of it on her own and we couldn’t leave until she was okay. It was a horrible experience and I hope we never have to endure that again.
After we got through the horrible dental experience, life went on as ‘normal’. Whatever normal is… We were definitely brushing better and toned down the candy/treats. I started telling people that they will have to contribute to Kailey’s dental fund if they want to give her sweets. That got people to back off, ha! Kailey was such a sweet girl, most of the time. She loved being a big sister and really cared for others. When she started developing these behavioral problems, it was puzzling to me. I felt like something was taking over her body. It wasn’t like her at all to act this way. People would tell me it’s normal for kids to act like this but I knew it wasn’t. I can tell you about a situation I clearly remember. A friend was over with her kids and Kailey was acting up, more than she usually would with friends over. At one point in the day, she had a plastic bat and was batting at the TV and cussing. She would never use a cuss word, or bat at her TV. This was not her at all. Everyone was wondering what was up with her. Why was she acting so different? I also remember times where we would be doing homework and it was like she was completely gone. She wasn’t listening, she couldn’t function and it was stuff that I know she knows. Then other days, she would be right on top of it. As soon as I was feeling better, I was able to really focus on her so I started to track these behavioral problems, especially after we switched the type of food we were eating. I wanted to see if what she ate made a difference, and boy did it! Red dye/refined sugars are a huge factor. Even though we switched to organic/natural foods, she was still getting these ‘bad foods’ from other places. School, friends’ house, grandparents, even church! We couldn’t seem to get away from it. So now, when we allow Kailey to have a special treat (the bad food), we make sure it at least doesn’t have red dye in it and she is just allowed to have one. If she has too much, she has a lot of problems the rest of the day. The ‘other Kailey’ comes out. We also try to make sure she gets enough sleep at night and doesn’t stay up too late. Her behavioral problems have subsided drastically. It is not perfect but she has made huge noticeable improvements.
4th of July, 2013, Kailey was 7 1/2 years old. We were at a friend’s house. We brought some of our own food/drinks but had some other stuff too. There were definitely some items with red dye in them. There were fireworks, the kids had glow necklaces/bracelets, and lots of sugary stuff. The kids were having fun and we only stayed until after the fireworks. Then loaded them into the truck and left. I remember noticing that the kids fell asleep right away. We only had about a 15-20 minute drive. When we got home, Jesse carried Tyler inside and I tried to get Kailey to wake-up so she could walk inside. She wasn’t moving, not even a little. Usually she woke-up pretty easily. So I tried to pull her out of the truck and she was really heavy, just limp. Then her legs started moving up and down and I remember thinking, ‘What is she doing? Why is she doing that?’ She threw her head back and started convulsing. I laid her on the ground on her side but held her head and started yelling for help. It’s crazy how you remember things in an emergency situation. I didn’t even know that I knew to lay her on her side, it just happened. My neighbor heard me yelling and came to help. I tried to dial 911 but my fingers were fumbling, so she dialed for me. I ran inside to get my husband because at this point, he still didn’t know anything was happening since he had gone in to lay Tyler down. Kailey had been seizing for a few minutes, as far as I could remember. I know it felt like forever! The ambulance came and she became aware of what was happening. She freaked after seeing the ambulance, fire truck and ALL the people involved. So I got on the gurney with her and tried to hold her down. At the hospital (picture above) they did a urine sample, blood test, checked all her vitals and asked a lot of questions. Then we were sent home and had to follow-up with her doctor. The next day Kailey informed me that she had bitten into one of the glow bracelets that night because she was nervous from the fireworks, and ingested some of the chemical-filled liquid. We went to see her doctor and they didn’t think it could be from that but I thought it was one heck of a coincidence that it happened the same night. Then we were referred to a specialist. It very well could have been a combination of the chemical from the glow bracelet, too many dye filled sugary treats, and the fireworks. Sometimes things may be just as simple as they seem. This made sense to me.
We saw the specialist and didn’t get any real answers as to why this happened, which I think is pretty common at first. They asked a lot of questions and went over information about seizures. They said they think she has Benign Rolandic Epilepsy. We were to follow-up with her later in the year and have an EEG done. The EEG came back abnormal and two days later, Kailey had another seizure. Was it from the lack of sleep prior to the EEG and all that was involved in doing the test? I don’t know but I was freaked now. I thought she would have just the one seizure and it would never happen again. This time, it was really early in the morning. She had a bad dream and ended up at the end of our bed. It was about 6:30 and I could hear like a choking sound, or gagging. I thought it was the cat at first and when I realized Kailey was in our bed and it was coming from her I jumped up, turned on the light and woke Jesse. This time, she wasn’t breathing. I tried dialing 911 and once again, my fingers were fumbling. I stayed by Kailey while Jesse called. It seemed like she was seizing for a few minutes but we really don’t know when it started. When she stopped seizing, Jesse moved her to the couch, medics came and checked her out and we had to head to the hospital again. Same tests and questions. This time they called the specialist to see if we should put her on meds right away. I was crossing my fingers that we wouldn’t have to do that. Luckily, they said no and that we would discuss it in person. We went in and discussed everything and they thought she should be put on medication. When they went over the medication with us, it was about a half hour long discussion of all the side effects and risks involved. I was not excited about this and really did not want to put her on any meds if we didn’t have to. I didn’t know much about seizures but I trust my instincts and they were telling me this was a bad idea. The next step was to have an MRI. She did and the results were conflicting with the results of the EEG. The MRI showed scarring which could have been caused by a possible stroke in utero, and the EEG wasn’t showing what they would normally see for Benign Rolandic Epilepsy. So then they said they aren’t sure it’s that and that if we don’t want to put her on meds that’s probably a good idea at this point. I was happy about that.
So we are basically on seizure watch now. Will this continue? Is it only at night? We don’t have to go back to the doctor unless it happens again. Well, it’s not like we are watching her while she is sleeping. She could have had more seizures that we don’t know about. And why is she having them at all? There are many nights I don’t sleep very good and will peek in Kailey’s room. I worry about her a lot. I have also even wondered if she has Fibromyalgia, or SPD (Sensory Processing Disorder). She’s so sensitive to everything. The kitchen chair hurts when she sits on it, she’s always so cold and tries to bring a blanket to the table, she’s sensitive to sound. When the bath water or shower is running she plugs her ears. Pain is intensified. Something that shouldn’t hurt that much hurts 10 times as much to her. It takes her longer to wake-up in the morning, like she’s in a fog. I will ask her a question and have to repeat myself several times to where I have to yell to get her to hear me. She will also get dizzy when she gets up fast sometimes.
There are so many unknowns, so I go back to what I do know. For me, everything goes back to the chemicals we are exposed to. They are everywhere. In our food, in the air we breathe, in just about everything we touch. Just think about being exposed to so many different chemicals all the time. Of course it would cause damage over time. I believe this is the cause of Fibromyalgia, I believe this is the cause of so many other problems out there that didn’t even exist back when our grandparents were growing up. I can only go with my gut instinct and what I truly believe. Were the behavioral issues and seizures caused from everything she was exposed to? From all the vaccines, the crazy amount of fluoride she was exposed to, anesthesia from being put to sleep at the dentist, all the GMOs/chemicals in the food along these years and the abundance of dyes/sugars in candy and sweets, glow stick chemicals she ingested, all the other chemicals we are exposed to on a daily basis by breathing or touching, who knows?!?! I do know what makes her better, and that’s all I can go by. I will keep fighting for the health of my family, and the health of others. We will continue with our natural way of life and just hope that Kailey continues to improve. Hopefully there are no more seizures and that we never have to put her on meds. There was a time where I thought Kailey had ADHD, or ADD. I’m sure if we had gone to the doctor about this, she would have been prescribed some kind of medication. We could be in a totally different place than we are now. But I feel like we have a handle on things and that she doesn’t need to be medicated. We just need to keep doing what we are doing.
I just want to be clear that you should always consult with your doctor or your child’s doctor if you are considering whether or not to take medication or if you want to stop a medication that was already prescribed. This is what we did for Kailey and what we believe is right for her and her situation. I wanted to put all our information out there and share our story with others in hopes to motivate towards eating organic/natural foods and to become aware of damage that can be caused by the exposure to so many different chemicals. Maybe we can prevent these kinds of things from happening. I am not an expert on this. I am simply a mother that cares a whole lot about her children and wants the best for them.
Well, we really thought Kailey wouldn’t have another seizure but it happened again. On July 9th, about 6:20 a.m., my husband (Jesse) was getting ready for work and I got up to go to the bathroom. I heard a noise, like gagging or choking and knew that sound immediately. Kailey was seizing, and I yelled for Jesse. We made sure she was on her side and that nothing was around to harm her. I was watching the clock (and panicking). It went on for a few minutes. She stopped convulsing but was very out of it. She had drooled out the left side of her mouth. We were trying to talk to her. She was finally able to say her name but could barely get out the words. She couldn’t tell me how old she was though. Then she started to stare at me with blood-shot eyes and her pupils were huge. It was freaking me out. It was like she was there, but not. The scariest blank stare I have ever seen and I can’t get that vision out of my head. She developed this twitch by her mouth. I was just so freaked out I decided to call 911. We weren’t thinking she would need to go to the hospital again if she had another seizure but I thought they could just come check her out. Well, she started convulsing again but it wasn’t like before. It was just a little bit. And she wasn’t breathing. This went on for a few minutes and it was probably 5 minutes in-between the 2 seizures. She caught her breath and came-to. We just let her be. The medics arrived and checked her out. They recommended taking her to the hospital.
At the hospital, we answered a lot of questions and did a urine sample. She wouldn’t let them draw blood. The doctor came in and said he wanted to give her Lorazepam. Just a half a pill. Well I didn’t think she needed it. I know what Lorazepam is because they gave it to me when they thought I was just having anxiety but it was really Fibromyalgia symptoms. So the doctor argued with me and was extremely rude. He asked why we came to the hospital and what we were expecting if we didn’t want treatment. And then he said that if he felt that Kailey was in danger and needed treatment, he would give it to her and there was nothing I could do. Now, my husband wasn’t in the room at the time. I was very tired and upset from the whole morning. This was not what I needed. I told him that I felt like she was fine now and didn’t need to take any pills. We can do whatever testing we need to but I don’t want to give her any medication without talking to the neurologist. He had also admitted that he knows nothing about Benign Rolandic Epilepsy and hadn’t even heard of it. So why do you think she needs Lorazepam then??? Well guess what? His tone completely changed after coming back from talking to our neurologist at Mary Bridge (and also my husband was in the room this time). He was very nice and said we don’t need to medicate. We just need to call the neurologist and schedule an appointment. Kailey’s urine sample came back fine and we were out of there.
Kailey told me that she developed a headache at the end of the hospital trip and when we got home she felt sick and dizzy. I’m not sure if that was just normal stuff after having such a crazy morning with 2 seizures but I made sure she rested all day and drank lots of water. So, we met with the neurologist a couple days later and she said everything that has happened so far fits Benign Rolandic Epilepsy and thinks that’s what Kailey has. She said she should outgrow it and I really hope she does, soon! It is so hard to sleep, wondering if she’s going to have another seizure. Even if Kailey is right next to me, I am constantly checking her and worrying. I have to figure out how to live with this because it most likely will happen again. I have to be strong, for Kailey. And I can’t go without sleep! We are fortunate that this is something she will probably grow out of and it is a milder form of epilepsy. I recently read a story about a baby girl with a rare form of epilepsy that was so severe she was expected to regress developmentally between the ages of 2 and 6. With diet and natural lifestyle changes, she was able to reduce her epilepsy symptoms by 90%! It was an amazing story. Even though what Kailey has is a lot different, this gave me hope with what we are doing and motivated me to keep going and make even more changes towards natural living.