So, we got to the therapeutic level of Depakote (Madalyn's seizure medicine) about 3 days before school started. Once we did, I saw a tremendous change in her. But, each time I got ready to write about how great life was, we would hit a bumpy area. The last bumpy area was when she got a sinus infection. I called all the doctors, panicked that we were heading down the dark road again. For two days, she had some long tantrums. She wouldn't read. She couldn't sit still. I really thought the antibiotic was interfering with the absorption of her Depakote. But, the nurse at her neurologist's office told me that oftentimes seizure activity gets worse before, during, or after an illness. For Madalyn, it appeared right after. I reminded her I had not seen any seizures, but she felt like the return of the symptoms was related to increased spiking from the mild illness.
Fast forward to this weekend. She drew pictures and made sweet cards for her family. She colored. She was sweet and calm. She read a book to me. Temporarily having a child that is physically unable to sustain any activity without a meltdown, makes me fully appreciate and know the true joy for her when she is able to do these things.
Last week her teacher told me she is doing great in first grade! She does not see ANY attention problems:) She thinks her reading is fine, and she has no problems getting her work done. I was so relieved and excited to hear this!
When she had to get off her medicine, her writing was messy, her coloring was scribbled. Her swim stroke was a messy paddle. Her face looked like it had a dark cloud over it. She clung to me when I brought her to camp. She would not look at me....no eye contact. When I took her to the gym, the people she had been greeting and talking to since she was a baby, she would hide from.....It got to the point they would look at her face, and shrug their shoulders and say "she's in one of her moods tonight, isn't she". She was described by camp as "moody", and "unable to concentrate on activities". She would beg for things at a store, only to get home and not be able to play with them. All of that is gone. The real Madalyn is back, and I am so thankful. Although I didn't want to put her on medicine, I can say that the benefits outweigh the risks for us.
Her face lights up with her beautiful smiles. She is swimming better than she ever has before. She is reading. She is coloring. She is drawing. She has good eye contact and carries on conversations with me. She looks forward to things at school. She greets people at the gym, and holds conversations. And did I mention her face lights up with her beautiful smiles?
Madalyn is having an inpatient EEG next Monday, Tuesday and Wednesday. This will look at her seizure activity to determine if the spiking has decreased on Depakote. We know it is reducing the number of clinical seizures she has, and we think it is reducing the spiking based on her improved behavior and attention. However, she is still needing at least 12 hours of sleep at night, and still bed wetting....this could mean her spiking/seizures could be better controlled with adding a medicine at night, or increasing Depakote. The EEG will help her doctor make that decision. Bed wetting could be normal, but because it stopped completely on Lamictal, it more than likely means Depakote is not controlling night time spiking as well as Lamictal did.
We have not told Madalyn about the EEG because she will dread it. She hates the glue that pulls her hair and smells bad. She hates the loud blower that tries to blow the smell out of the room. She hates it when the doctor discusses her (always has). And she hates being confined to a hospital room. So, I'll be waiting as long as possible to tell her to minimize her sense of dread!
