My Silver Lining

One of the blogs I follow regularly is that created by Kristen about her daughter Cayman. For the past few days, Kristen has been blogging about the silver linings in her day to day situations. I thought how I longed to see the silver lining in our current situation with seizures. There really isn’t anything happy about them or enjoyable or anything. But the more research I did, the more I realized how I can help Tyler on a daily basis. I realized that many parents had success in reducing the number of daily seizures simply by changing the child’s diet. Simply by eliminating things that we shouldn’t be eating anyway such as artificial colors, flavors, and dyes. Could this be my silver lining in this nightmare? I am hoping so. No I KNOW so!!!!

Yesterday I went through the cabinets and started throwing away things such as pop tarts and nutri-grain bars, and some condiments. I found myself spending almost an hour in the organic food section of our grocery store picking out new snacks for Tyler. While I do a lot of cooking from scratch, there are some things that he eats that are certainly not good for him. He is strictly a finger food kid so snacks for school are limited to fig newtons and nutri-grain bars. His breakfast choices are also limited to finger foods such as bagels, english muffins, pop tarts, and homemade waffles and pancakes. And for desserts if I haven’t made cookies or brownies, then he is limited to oreos, store made cookies and brownies, and of course fruit.  I was shocked to find out the number of artificial flavors and ingredients in condiments, cookie mixes, bread mixes and more. I guess I have become naive to this but then again, I never had a reason to thoroughly read a label.

So sure, I could take this situation as a very expensive situation as we need to completely restock our cabinets or I could see the silver lining. And I chose to see the silver lining. Why should I be putting these chemicals in our bodies let alone his? ********** This is a warning as this part is disturbing….the artificial flavor vanillin that is used in oreo cookies comes from paper mill waste!!!! *******Why is it that over 60 years ago, there weren’t these ingredients and there weren’t the number of health issues as there are today? Sure it’s going to be a drastic lifestyle change but it is so worth it. Yes Tony and I need to really watch ourselves now, as we will be using real butter instead of Country Crock, and we will be using real maple syrup instead of “artificially flavored” syrup and these clearly pack more of a caloric punch than the lower fat chemicals we have been using. But when I sit and read how thousands of parents have seen a drastic improvement in their child’s temper, behavior, and overall well being when eliminating these simple ingredients, how could this not be good for us? And I read that in many cases it has helped improved nystagmus! I am not counting on this as the be all and end all cure to all of Tyler’s issues. But, if it can help him just a bit, and maybe we can reduce some of his medications, and make him healthy since everything is all natural, why wouldn’t I make this change??? Thank you Tyler for once again opening my eyes and seeing what is important. Thank you for seeing that while you continue to struggle daily, that Mumma and Daddy can try help you in addition to your medications by eliminating chemicals from your daily diet. Thank you for pointing out my silver lining in this chaos. I love you.

Seizures stink

If you remember, a year ago, Tyler was diagnosed with complex partial seizure disorder. He was put on medicine and things were ok. Around Christmas, he started to have more seizure activity during the day. The doctor increased his medication and things seemed fine. In January, his seizures started to become more complex. They started lasting around 30 seconds and he started shaking with them. We called these “bad” episodes as they were traumatic at least for us. The doctor wasn’t overly concerned when we went to visit in February and he said he might need a medicine increase if his levels were low. Tyler had come down with a sinus infection during February vacation so we had him tested a week later. That bring us to a week ago.

Wednesday, March 10th, started off as a normal day. Tyler had a “bad” episode at 6AM then fell back asleep. I woke him up at 7AM for school. He was super happy, pretty vocal, and filled with smiles. He ate a good breakfast and was ready to go for school. We get dressed in his room on school days. I got his diaper changed, socks on, onesie on, pants on, then a “bad” episode struck. But this “bad” episode lasted longer than 30 seconds. It lasted longer than a minute. It was going on 2 minutes. And his whole demeanor changed. His face was making these weird contortions. He was having trouble breathing. And I was alone. I still get him dressed on a changing table so I had to carry him, seizing, across to our bedroom and put him on the bed so I could call 911. They were there within seconds. Panic completely set in by this point. By the time the paramedics arrived, Tyler was out of this chaos. And thanks to my neighbor who ran over to help, I was able to call Tony, and put shoes on. I was after all supposed to be going to work after I dropped him off at school. Off we went in an ambulance to our local hospital. Tyler had a panicked look on his face while I tried to remain calm. We arrived to the hospital around 8 and were in for a battery of tests. They drew blood, did a CT scan, and a shunt series on x-ray and more. Everything turned out fine. The ER doctors consulted with his neurologist in Boston. The verdict, increase his medication by 1 mL. I wasn’t 100% confident with this decision but knew his neuro was consulted so I opted to sign the discharge papers. That was 3PM. We dropped the prescription off on the way home and arrived home at 4:15PM. 4:20PM, our world turned upside down, again. Tyler started seizing and had that same look upon his face as he did in the morning. I begged Tony to call 911 but he said no as it had only been 1 minute. I kept begging him as I knew it was going to last longer. And it did…4 minutes before the paramedics arrived. And at this point, he was foaming at the mouth, throwing up, and having trouble breathing. The EMT’s had to give him oxygen at this point. I couldn’t believe this was happening again. I knew we shouldn’t have left. My poor baby. What was going on. So off we went to the local hospital again, where we were administered for the night.

Thursday, March 11th, our neuro suggested we get transported to Children’s Hospital in Boston where he is. So Tyler and I went for our 3rd ambulance ride in 24 hours. It took us 7 hours to be admitted but we finally were, and to a neurology floor. And here we spent the next 6 days. On Friday the team decided to hook Tyler up to an EEG for 24 hours. And like a true trooper, he hardly protested! And much to my dismay, the doctors wanted to decreases his seizure med in half in hopes to capture a major seizure. On Saturday morning, while eating breakfast, this happened. I had to hit the nurse assist button and 18 people came running to help him out of the seizure. It lasted a little over a minute but for me, it was an hour. After this the poor thing slept. He kept having little seizures so they gave him Adavan to stop them. However, the adavan made him sick..all night into the morning. He had to have an IV fluid hooked up as he couldn’t keep liquid down. At this point, I was loosing it. I thought this was the biggest mistake we had made. How could we have put him through this? How could we torture someone who’s body already was torturing him? What was wrong with my baby and how could we make him better FAST?

Sunday, March 14th, the doctors told us despite the torture we put him through, they had captured great data on the EEG. They discovered that his seizure disorder is generalized instead of focal as originally thought. And the medication he is taking, isn’t working. So the plan was to start him on a new seizure med and try and get him to eat an drink. This just wasn’t happening. And again, mothers instinct kicked in and I knew he would do better at home than in the hospital. He wanted nothing to do with the bed any longer. He wanted nothing to do with sitting. He wanted nothing to do with anything. The doctors agreed and I was again faced with the discharge papers. Part of me wanted to take him and run. The other part of me was scared to death to take him home thinking he would have another grand mal seizure. But my gut said take him and that we did. When we got home, he was so timid. He didn’t know what to do. He didn’t even want to sleep in his bed that night. My heart was aching for him. I wanted to crawl in his bed and never let go. But I wanted him to know he was home.

Every day has been torture. He continues to have little episodes and now is having shaky 18 second episodes. The doctor reassured me this is normal as he isn’t even at his full dosage of his new medication. This won’t happen until Friday. I am terrified to leave him alone. I know this is going to be our life going forward. But I just can’t bear to leave him. What if this happens at school? I want to be in the ambulance with him. I want to be there to reassure him everything is ok. I hate this change of events that is now our life. I want him to be ok and not suffer. Not be scared. I am not sure how long this feeling is going to last. I don’t know if it will ever go away. I don’t want to smother him, but I can’t bear to be away from him. This is the one thing I was hoping we would never have to experience and we have experienced head on. And I had to deal with it alone. My baby, shaking uncontrollable, looking at me, scared. And there was nothing I could do but pick up a phone.

Now that he has been home for a few days, he is definitely back to his normal self. He is playing with toys, exploring the house, playing on the swing and more. He is smiling and laughing and happy. Which melts my heart but just a bit. My heart is still broken for him and I am on edge. I just want to keep him safe. Isn’t there a bubble we can put him and all the other children in?????