Age 7-more new challenges and yet another diagnosis.

Here we are now, at age 7. Gillian repeated First grade. Luckily all the first grade teachers knew Gillian from last year. This year she got another wonderful teacher and has had her teacher from last year for part of the school day too. This year has not been so great. The first couple weeks of the school year were brutal. She was literally bouncing off walls-almost like she was trying to crawl out of her own skin. They had her on Prozac for her OCD and apparently that did not agree with her. It turned her into a different child! I noticed it a bit at home but once she started school we saw alot more. So we stopped it and noticed a change for the better. We began another medication and she was doing well. They are moving ahead quickly and Gillian is falling behind. It all started around December. She was doing good-had her IEP meeting and she was a little behind but not too bad-at that point we were not worried. She started wetting her pants. I attributed that to the ADHD and her attention. Thinking maybe she was waiting too long to get to the bathroom. Then come January, after winter break, she kept falling asleep in class. I was upset thinking something was wrong. It kept up so I got her in to see a doctor. They ran bloodwork and it all came back just fine. We were baffled. She had started being extra nervous-picking her fingers till they were bleeding. Her behavior became worse-more tantrums than normal. I thought she needed an increase in her ADHD medication so I phoned the doctor. They upped it and I was hopeful. No change!
Then came her Parent Teacher conference. She had fallen very behind. At that point I was very concerned. That same week I was called to bring her a change of clothes as she had wet her pants. Uh oh, I thought. It was really rough-between her behavior and the wetting her pants and now school, there was something going on. Again , not sure. It was a rough weekend following that and out of desperation I emailed the nurse practitioner at the Neurology office. As I was laying around the house trying to calm myself after a stressful Saturday I remembered I had some emails back and forth at one time with her and thought I would give it a try. I heard back not even 5 minutes after I sent the email (on a Saturday Night!). She apparently was not working in the office much, but forwarded it straight to the nurse. They called me on Monday but I missed the call. Doctor wanted to see us on Wednesday. So I went in and talked to the doctor and told her all that had been going on. She asked me up front if Gillian had been having seizures. I thought to myself "What is this lady thinking?" I had not seen Gillian have a seizure. That was just crazy.
Then she asked if I had ever seen her zone out. I told her we see that alot. She then said she could be having them-that there is a kind where they don't convulse but they stare off into space. Ah-hah! I remembered. I had read about those at one point. So the EEG was ordered. From what friends have told me and what I have read, those are hard to detect in an EEG. I was not optimistic they would catch one, and still in disbelief. When it came time to do it, I was excited to get it over and done with. I hoped they would find something, assuming we would be able to take care of it. Within about 2 minutes of starting the test, they detected one. I saw it with my own eyes and was FLOORED. I saw it on the screen and immediately asked the tech what that was. He told me that it was possibly what they were looking for. He then went to a couple of screens and turned back and confimed it WAS a SEIZURE. At first I was relieved they found it. As it went along and I saw more (she had 3-4 seizures during the 30 minute test), I started crying. What was I to think? It all became very clear. The zoning out, the falling, the sleepiness she had had, the forgetting what she learned while doing homework-all classic signs. I had no idea. I felt like kicking myself. Often we cannot tell she is even having them. One indication is when she wets herself. Sometimes she does stop mid-sentence. When we are doing homework and 2 minutes later we go back to something and she doesn't remember-we know she had one. Her eyes don't move and she doesn't even twitch. This has by far been the hardest on me. I thought I would feel better knowing, but it has been harder. Seeing her have these has been hard. Just knowing that seizure activity is happening. Knowing it is causing her delay. At this point, there is a chance she could grow out of all this. But there is a chance it could also get worse. We are on a path to find the right medication now. The first one caused her to be aggressive. She was throwing punches at me and doing things that could hurt other children at school. Its just not my Gillian. Now we will probably have to start another medication. That is hard, the not knowing.
I just want her to do her best in school. I know she has it in her. She is smart. But this monster thing is causing her issues. I HATE this. I hate the word Epilepsy. In a million years I never thought that she would have this. I feel horrible that she has had to struggle her entire life. I wish I could just take it all away. Since she has started school she has been given several diagnoses. Some I knew there was a possibility of, and others that just totally came out of nowhere. It makes me wish that when they had sent her home from the NICU that they gave us some kind of manual, or a book that would give us some insight as to what we may be dealing with later on , hence this blog. It was all so unknown. It makes me wonder what is going to be next for her, and I worry about that. At the same time, I realize we are so lucky to have her. I have alot of different emotions running through me right now. Bottom line is, I worry about her and her future. I know she has her purpose and I always wonder what that is. I see how strong she is , so she has a reason for being here. She never gives up. Even after all she's been through, she keeps going. Overall she is very happy-she always has been. I think she is pretty amazing.


  1. I think she is pretty amazing too! You are a good writer Kristy and I hope putting this out there will be good for you. Gillian is such an incredible girl and having to fight for everything will maker her stronger. It will make you stronger too. I know you wouldn't get these challenges if you couldn't handle them and you handle them wonderfully!

  2. Oh, your beautiful little girl - she is so precious, Kristy and she WILL get through this - as will you! I can imagine, reading that what you have been through - it must have been so difficult and the fear of not even knowing when she's actually having a seizure must be so, so heavy. You're all in my prayers, my love - take hope and look up!

  3. What a sweet blog! I am so happy that you have found peace through this writing process and I know that it will help others. I remember the day Gilly was born and the prayers that were offered. She IS a miracle. Love you!