Monday, February 23, 2009
So I got the word from Treyton this weekend that I have done lots of posts about Cassidy lately, but nobody else. He said I needed to do one about the other kids. Hes right and I will get on that as soon as I can but I thought some of you might want to see what her rash looks like. I sent these the neurologist this morning. Keep in mind that this is still a "very mild" case and that she has been on benedrayl since Thursday.
Friday, February 20, 2009
Yesterday was a long awaited day for Cassidy. She got to come to the office and have her cast removed after six weeks (if you ask her six very long weeks). Since I was working yesterday my sister dropped her off at the office after school. When she came she very nonchalantly says "oh by the way I broke out into hives today" Apparently they had been doing a rehearsal for the 5th grade program at school and she had been wearing a shawl. She and the teacher assumed it was just a reaction to that and didn't worry to much, my sister who works at the school even supplied a little Benydral for her. The problem was the shawl only covered her arms and she had spots all over her body. Not only that but they weren't itchy at all as hives generally are. Now I'm not sure anybody remembers but in my last post I mentioned that the anti-seizure med Cass is on can cause horrible rashes that can even put kids in the burn unit. My mother/nurse worries were raised when I saw the rash. Luckily I work for a doctor and we just happened to be in his office. He declared it to indeed be the beginning of a lamictal rash and said to stop the med immediately. The interesting part is Cass is still taking a very small dose of the medicine. She is working her way up to taking 100mg in the morning and another 100mg before bed. Now she is only taking 25mg morning and night. So the dose is not even half what she should be taking. As was suggested I didn't give her the evening dose and put a call into her neurologist and she agreed. Cass is not to take any more med until the day before we see the doctor in a few weeks and then she will take one 25mg dose the night before we go in. Cross your fingers and say your prayers that they find something that works without horrible side effects. The good thing about lamictal is that it has very few side effects and the rash is very very rare! Oh Cassidy what are we going to do with you!!!!
Friday, February 6, 2009
Cassidy had another EEG on Tuesday the 3rd. This required her to stay up all night Monday night. She did really well with this and didn't complain about being tired until about 7:30am. We watched several movies and she played with her webkinz online. Barry stayed up with us and it was actually kind of fun. We then visited with Dr. Vance yesterday. This second EEG confirmed what she was thinking. Cassidy does indeed have epilepsy. She has been diagnosed with Complex Partial Seizures. Although I have not witnessed one of these type, and believe me I have been watching, the Dr. said they are not always visible but the test shows she is having them. They were even able to catch two brief episodes of seizure activity on the EEG. Dr. Vance has put her on a "new generation" of anti-convulsives call Lamactil. The side effects of this are supposed to be pretty mild. This drug can also be used to treat Bi-polar disorder. The most common side effect is drowsiness although there can be a rash that puts kids into the burn unit. I initially panicked about this but was assured that this generally happens when it is combined with additional seizure meds, (which is not happening)or when the dose is started high. Cassidy is actually starting at 25mg a day and the base dose is 200mg a day so this shouldn't be a problem. We are starting low and building slow so she won't even be at the base does for about 6 weeks. Dr. Vance said some docs would move faster then this but she believes in playing it safe, which I fully agree with. Cassidy should start her meds on Saturday. This is certainly not what I was hoping for, I was hoping that they would say it had all been a big mistake and we should just go on with our merry lives. Well we do get to go on with our lives, just a little sidetracked. I have prayed alot about this and although it scares me I do have peace with it. Its funny how you can feel peace about something that scares you to death. It's certainly not the worst thing that could happen though and definitely something she can live with and through. Cassidy is such a sweetheart, I hope she knows how much I love her and how much praying I have done over this. My peace comes a great deal from that and from the priesthood blessing she had that told her all would be well. Thanks to all of you for your prayers on both of our behalf, mothers need at least as much as the kid they are worried about.