So Kaitlyn has been sick for over 2 weeks now with RSV, a double ear infection, a UTI, and a yeast infection from the antibiotics to treat her double ear infection. Before she started to get sick her seizures had started to increase but I didn't realize what was happening... It's like I did but I didn't want to admit what was taking place. I started to tell Nic about the increase, he said that he thought I was wrong and that it was something else. Then Kaitlyn started to get sick with the RSV and ear infection and there was a major increase in seizures. At first I didn't know if they were seizures as it was mostly how her eyes went that made me concerned, but now I know they were seizures. Now she has been having seizures every couple of minutes and they last for about a minute or more. It's like her eyes are constantly dialated and just off.

My uncle moved back to Iowa, and just got here today. He's a nurse and has been for 30 years or more. As he was holding Kaitlyn tonight at the dinner table she had one of her seizures that I thought were seizures and no one else believed me. My uncle said they were seizures, he said that he even felt her tighten up. Ugh. It's devastating in a way to know that they are seizures because then I know that she is having a lot of them and there is nothing that we can do. I am getting really worried about her. Her neurologist wants to do some genetic testing now to see if she has a certain kind of Epilepsy. She wants to do the SCN1A test. It would be nice to have some for sure answers about everything but at the same time, it would be crushing to know that her Epilepsy is worse than what we thought. All though as the days go on I am starting to realize that her seizures are more serious than what we thought at the beginning. They are increasing and changing in the way they are, I feel like it's only a matter of time before she starts to have the tonic clonic ones as she is having a lot of tonic ones now.

Her seizure types have changed and also added a few. She is having a lot of eye fluttering, almost constantly. Then she is having this ones when she is falling asleep where she jerks and gets stiff (must be the tonic movements?), then she is having ones where she throws her head backwards, then she is having the ones when she is waking up she doesn't actually come to it for 3-4 minutes and is stiff and has some subtle jerking, then there are ones when she is sleeping that I am not sure what happens but I am almost positive that she is having them when she is sleeping because something is waking her up and she is having these ones where she just gets this blank stare and then starts to shake her head back and forth.

Kaitlyn is now on Topomax and Depakote. She is on Klonopin and Prednisone for a week trying to get her seizures to calm down and so far, it's not working. Her behaviors have been out of control but I am sure it's because her seizures are so out of control. I worry about what damage might be happening from her seizures...

Ugh... I just don't know how to cope with it all right now. I feel like losing hope because of it but I know that it could be worse and I should be grateful for what I have. It's hard. I feel like nothing is working out and nothing is making it better. I just don't understand why her. I know, all parents and everyone who is going through this wonders why them or why their loved one. How do you get past that part of the grief process?? My mom is really pissing me off with this whole seizure and Epilepsy thing though. She acts like Kaitlyn doesn't have it, and when my uncle was trying to tell her she ignored him. It's really rude and offensive. She acts like she's too good to have a grandchild that has something wrong with them. It's not right. I just want them to understand what it's like. We go to the ER a lot because of her seizures and my mom acts like I shouldn't take her. What other choice do we have sometimes? We can't just let them continue without seeking medical help. I don't know. I just want more support from our family and for them to understand a little bit what it's like to have a child with a such a life altering condition.

I don't know. Just reaching out for something and I am not sure what it is.