Update

I'm so sorry it's taken me so long to post an update. Kaitlyn's seizures have continued to occur, so Dr. Olson increased her medication. Her blood levels were in the normal range, but he still advised on an increase. We were advised to watch her for two weeks to let her adjust to the increase. Last week, her seizures were more intense. I didn't think it would get any better! But the last three days have been much better. She does have a touch of bronchitis, but she's not having seizures. So we'll take it!

Our next appointment with Dr. Olson will be in March. I'll keep you posted on any changes!

Thank you for all of your prayers!
xoxoxoxoxoxoxoxooxoxoxoxoxox

1st Blood level

Dr. Olson's office called this afternoon and wanted Kaitlyn to come in & have her blood level checked today. Our visit went well & the level results should get to Dr. Olson tomorrow. Stay tuned!

Kaitlyn's drowsiness has gone away, but she's continuing to have seizures. We noticed them start on Thursday and are still occurring today. She's having at least 3-4 per day. They are less frequent than before and more subtle, but Dr. Olson advised us to call his office when we see changes.

We gave our diary of seizures to the nurse. She was very thorough, asking us tons of questions and told us what to keep track of (medicine changes, seizure length, seizure description, etc). Every time we see a change, good or bad, we'll call the office & report these changes. She said there's no need to call every day, but every week to 2 weeks would be sufficient. She'll give her notes to Dr. Olson and she suspects he'll want her blood level results before he makes any recommendations.

Kaitlyn's first blood level check is scheduled for Thursday, but it will probably be tomorrow.

Kaitlyn is still very happy & playful. Her teachers said they've noticed she's playing with more toys and likes to babble even more than before!

We'll be sure to post Dr. Olson's recommendation once we hear.

Our meeting with Dr. Olson

Today was our first meeting with Dr. Olson at Emory Children's Center. They started by taking several stats - weight (21.5 lbs!), height, head circumference, etc. Dr. Olson began by asking us about the episodes we saw in Kaitlyn. We described them the best we could. He said they were not typical, but did say that they were NOT occurring 8 times per minute. He confirmed her only episodes were the ones we saw - approx. 15-20 per day.

When we were initially told the frequency, we were concerned we wouldn't know when there was improvement with medication. We were very happy to find out the seizures we saw were the only ones she was having. That being said, we are thrilled that the medication is helping all of the seizures!

Dr. Olson said Kaitlyn's MRI results were normal. There were no lesions and no surgery was required. He did say that there is abnormal development in Kaitlyn's brain causing the seizures and the slow rate of her development. He was very clear that the seizures were not causing the slow development. His first priority is to stop the seizures. He was very pleased that she's responding to the phenobarbital. As far as her development goes - we'll have to wait and see.

Kaitlyn will have her blood level checked next week to ensure the proper level of medication. We will meet with Dr. Olson every 3-4 months to check Kaitlyn's progress.

We are very excited to know the seizures are less frequent and will continue to work with lil' KatieCakes to achieve all of her milestones! Thank you again for all of your thoughts & prayers!

xoxoxo

Doing great

This weekend was wonderful! Kaitlyn was very playful & didn't want to sit still at all. Josh & I didn't notice any episodes either! It makes us more relaxed as we mentally prepare for our meeting with the neurologist tomorrow afternoon.

We'll post another message after our meeting!

Full dose

Kaitlyn started her normal dosage amount of phenobarbital today. She will receive one dose in the morning and one at night. She doesn't like the taste - I think I'm going to have to find an alternative to the syringe.

Today was very normal. We didn't notice any increase her drowsiness or sleeping. Her disposition continued to be very happy.

We have continued to notice episodes, but we were told not to expect many changes right away. However, the episodes are less obvious than before. This is very reassuring! We are very anxious to meet with Dr. Olson on Tuesday.

In other news - Kaitlyn has started to hold her own bottle! Hooray!

Brave girl

Kaitlyn's MRI was today. She did terrific! It was hard to watch the sedation process, but she was such a brave little girl! Josh & I could not be with her during the MRI. She was gone for about an hour. Once back with us, it only took about 15 minutes before she was back to her curious self again.

We will receive the MRI results during our 1st meeting with the pediatric neurologist next Tuesday.

Josh & I are very appreciative of all of your thoughts & prayers. Thank you!

Kaitlyn is ready to be on the move - we think she'll be crawling soon! Tomorrow is Halloween & we're very excited to get dressed up!

Sleepy weekend

This weekend flew by, as they usually do. This was our first weekend with Kaitlyn on her medicine. It gave us a good chance to get a better idea of her drowsiness.

Josh couldn't help but noticed that Kaitlyn seemed really tired Saturday morning. He said she just seemed lackadaisical. Kaitlyn took 3 naps Saturday, slept all night (12 hours), and took 3 naps on Sunday. Each nap lasted about 1.5-2 hours.

We're really hesitant to give Kaitlyn a full dose in a few days - we're worried she'll sleep all day. We've left a message with Dr. Baldwin to get a revised dosage amount.


Other than day time drowsiness, Kaitlyn is still very playful and quite a firecracker!

Baby talk

Today was a great day! Kaitlyn was such a happy girl when she woke up this morning. She wasn't groggy at all. I'm glad to see she's adjusting to the medicine.

Today at school, Kaitlyn's teachers said she talked all day long! She was very playful tonight after dinner & went to bed at her normal time. We're looking forward to the weekend ~ Finally!

We have our appointment set for November 6 to meet Dr. Olson.

I had to wake Kaitlyn up this morning! She slept very sound & was happy when I woke her up. We have a feeling the doctor will have to adjust her dosage before we give her full doses.

Kaitlyn's MRI is scheduled for Tuesday, October 30. We should know soon when we'll meet with Dr. Olson.

Tonight, Kaitlyn was very silly during dinner tonight. She went to bed no later than usual - hopefully tomorrow will be the same.

Sleepy day

Kaitlyn went to school, where she loves to play with the other kids. Her teachers are very good with her. We had a meeting with them & they will help us monitor her drowsiness. I picked her up and found out that she took a 3 hour nap! That's about twice as long as she normally sleeps there. Once we got home, we had dinner & a bath.

Before I knew it, Kaitlyn was sound asleep at 6:30pm. I had to wake her up to give her medicine. We'll keep watching the sleeping hours! Other than longer naps, Kaitlyn was her normal happy, playful self.

Meeting with our pediatrician

Kaitlyn took her vitamin B6 over the weekend. We continued to notice episodes...

After a weekend of web searches on Google & WebMD, we felt prepared to meet with our pediatrician Dr. Baldwin.

We found out Kaitlyn's seizures were happening 8 times per minute on the left side of her brain, but couldn't pinpoint where. It's too early to tell if they are affecting her development, but she will be closely monitored. An MRI will give us much more information.

After a long Q&A session, we left with a prescription for phenobarbital. This medication will help slow the brain down. We won't see many differences right away, but in 3 months we'll have another EEG check the brain activity. We will continue to meet with Dr. Olson every 3 months.

Kaitlyn will be on 1/2 dose for 10 days to monitor how her body metabolizes the medicine. We'll need to watch for excessive drowsiness. We left our appointment feeling very well informed and confident Kaitlyn was in the very best care.

Within the next two weeks we'll have an MRI to get a better look at her brain & hopefully pin point a location & rule out any matter pushing on her brain. After the MRI we'll have our first meeting with Kaitlyn's neurologist, Dr. Olson.

Tonight was Kaitlyn's 1st dose of phenobarbital. We will find out this week when our 1st meeting with neurologist & MRI will be.

Our first post...

This journal was started to keep our family & friends updated on Kaitlyn.

We noticed Kaitlyn having episodes since she was about 6 months old (6/07). They would happen every few hours where she loses muscle control and blanks out. We initially thought that something may have startled her, as she would constrict her muscles very quickly and then go limp for a split second, much like you would do if you had been frightened by something. She makes a full recovery and continues to do whatever she was just prior to these incidents. After a while of noticing this activity more frequently, we decided to have her checked out and our pediatrician recommended an EEG.

Yesterday, we took Kaitlyn over to Children's Hospital for the EEG. Thinking we would have to wait 5 days for results, we were surprised when we received a call tonight from Kaitlyn's pediatrician. He confirmed that Kaitlyn is experiencing seizures. Hers are called focal seizures, confined to a limited area of the brain. The real concern in Kaitlyn's case is the frequency in which they occur. She is actually experiencing several of these seizures every minute, more intense when she sleeps, with a slower recovery time. That being said, she is a very happy baby and is not in any pain whatsoever.

The doctors want her to have vitamin B6 for 3 days, starting tonight. They want to make sure a B6 deficiency isn't causing the seizures.

We have a follow up appointment with her pediatrician on Monday to find out more information and then schedule a meeting with a Pediatric Neurologist, Dr. Olson. He is one of the leading neurologists in the southeast and we couldn't ask to be located in a better place to receive the best care and diagnosis possible.

We have many unanswered questions at this point and are trying to keep as calm and level headed as possible until we can get more details. Millions of people suffer from seizures and most are easily controlled with medication. We have never had any experience with them in our family though, and it is difficult to look at your 10 month old and know that she is experiencing them so often.

We will keep you posted as we find out more details.