Cause and Effect

Why do certain things happen? Growing up, I would always ask my parents, "Why?" Their canned response, "Because I said so."

Why was Sadie given these challenges in life? As a parent, it's hard not to blame yourself. Maybe it is god's way of punishing me for being mean to that girl in high school? Maybe it was that one night before I knew I was pregnant where I had too many martinis? Maybe it's because I didn't spend enough time volunteering, going to church, caring for those less fortunate...you see how it can drive you crazy??

For two analytical individuals like Adin and me, these mysteries that happen with Sadie are even more frustrating. After a few relatively calm weeks (only 3-5 seizures a day), the random twitches have again returned. Our initial guess (unsteady Dilantin levels) has proved to be untrue, so we're now exploring a secondary hypothesis - that her new medicine (Ospolot) is the culprit, as the twitches have seemed to occur a few days following an Ospolot increase. So...we're now taking her off the Ospolot and trying what will now be our eighth seizure medicine, Keppra.

Keppra has been used successfully on many girls with Aicardi Syndrome. Many docs like the drug due to it's limited side effects. When the twitching was occurring every 5 minutes this weekend, we ended up in the ER where Sadie received a loading dose of Keppra. Loading doses of meds are often given in a hospital setting to immediately reach a therapeutic level. While we thought we saw some initial improvement in the ER, the next morning the twitching was back...again every five minutes. It's just maddening to have her on five seizure medicines and the ketogenic diet and to still be experiencing such high seizure activity.

The emotional side of me wants to just take her off of everything and start from scratch. The logical side of me realizes the danger in this and will just keep plugging away hoping that these rough patches even out once we figure out the right medicine cocktail.

In other news, Sadie had her first visit with an otolaryngologist last week, or more commonly known as an ENT (ear, nose and throat) doctor. He is recommending a FEES (Fiberoptic Endoscopic Evaluation of Swallowing) study on Sadie. It is similar to a swallow study in that the study evaluates the effectiveness of the swallow, but will also tell us more about how Sadie is handing secretions and if there are any other issues with her swallowing.

While we can't help ourselves to try to figure out what the causes are...we keep plugging along, hoping that this rough patch will come to an end soon.

P.S. I just HAD to include the photo above in her blog. Sadie and Baxter, sibling love.

It Gets Better?

When Sadie was a newborn, she and I would take daily walks around our neighborhood. There was a local park we'd circle every day with a playground, pool, and softball fields. After Sadie's diagnosis, there were some days when making that loop was just too painful. Every child jumping off monkey bars, running by the pool, pitching a ball - was a vivid reminder of my own child's limitations.

As Sadie is our first baby, Adin and I have no previous experience in typical child development. We only have the children of friends and family with which to compare. Now that summer is into full swing, we find ourselves at friends' barbecues, pool parties, and family gatherings. As I mentioned in a previous blog post, it's quite difficult NOT to compare your own child to others.

Friends of ours, parents of another Aicardi girl, compare it to "the bends." A feeling you get when resurfacing from a deep sea dive. You are thrown into an alternate reality, then just as quickly, you're catapulted back into your own reality. Psychologists call it "chronic sorrow," a pervasive grief experienced by parents of children with special needs. There is no "It Gets Better" campaign for parents of children with special needs. You're simply handed a copy of a poem about Holland and sent on your way.

Don't get me wrong, I LOVE seeing our nieces, nephews and friends' children, and am fascinated with how quickly they grow and develop. But will there always be a twinge of pain when seeing a child do something that Sadie might never do? Does this mean our friends and family should feel guilty for having healthy children? No - absolutely not. We simply hope they cherish every healthy, typically-developing moment.

And while I hate hanging out in the land of "I feel sorry for myself", perhaps I've been thinking more about this lately because Sadie has been experiencing one of the most rocky seizure periods she's ever had. Her Dilantin levels have been all out of sorts - high one week, low the next. We also started a new medicine, Ospolot, a few weeks ago. Since then, she's been having periods of time where all she does is twitch. Sometimes it's mild - just the foot and hand twitching in a synchronized pattern, other times, her whole body twitches. This can go on for over an hour. We tend to err on the conservative side when it comes to administering Diastat (her emergency med), otherwise, we'd be giving it every day. We have given it three times in the past two weeks.

Just when we thought things were starting to calm down, the seizures spiked again for no apparent reason. We also noticed that Sadie's heart rate was extremely high and she was running a temperature. Come to find out, Sadie had a urinary tract infection (UTI). We started her on antibiotics, but the fevers continued to spike. Back to the pediatrician a few days later and they gave her an antibiotic shot - to which she had an allergic reaction. Hives all over her arms and legs.

And, while we thought we had gotten rid of the nasal cannula, she's needed to be on oxygen for the past week. According to her pulminologist, this can happen when kiddos get sick. Grrrrr...the girl simply can't catch a break.

So, I'm patiently waiting for things to get better. Patiently.

The only thing constant

Recently, I've felt like the only thing constant is change. We're aching for some regularity in our lives. Seizures are changing, medications are changing, feeding is changing.

Some changes are for the better....

Like Sadie is now taking all her nutrition by mouth. NO MORE NG TUBE! She is excited about the bottle, excited about solid foods...NOT so excited by her medicine syringes. So we've been experimenting with different methods of getting the medicines in her belly. What complicates the issue is the thickening of the liquid. As mentioned in the previous blog post, Sadie's swallow study showed that she aspirates thin liquids and all of her medicines are thin liquids (compounded liquid or crushed tablets mixed with water.)

Another positive change is Sadie's EEG. She had another video EEG study done last week to look at her brain waves. Sadie's neurologist reported that her recent EEG showed "more organized brain activity."

We are also happy that Sadie is slowly shedding her cords. She has been doing great off oxygen during the day. She even gets through her daily naps off O2. She is, however, still needing a trickle of oxygen at night. But we hope to get rid of the nasal cannula soon! I can't say when we'll be comfortable taking her off the pulse oximeter. There is a certain level of comfort in knowing her heart rate and oxygen levels at all times...but I know that in order for us to live a more "normal" life, we'll have to get rid of it soon.

Some changes are for the worse...

Sadie's seizures are still a little out of control. We've had to use diastat five times in the past six weeks. The most recent episode happened while her aunt and I were out shopping. Sadie began to have a seizure that lasted upwards of 20 minutes. We quickly headed to the car and administered the Diastat in the back of the minivan. As we headed home, her O2 levels dropped quickly and she became unresponsive. We gave her some emergency oxygen, but the O2 levels only rose into the mid-90s. So, we again found ourselves in the ER at Lutheran General. By the time we arrived, Sadie's O2 levels were back up, but she was a little woozy from the Diastat.

Luckily, this time we were released within a few hours. The docs found that Sadie's Dilantin level was high (33.6). Therapeutic range is from 10-20. If the level gets too high, it can cause increased seizures. So, we're working with the doc to reduce her levels. We also started a new medicine this week, Ospolot. Ospolot is not yet FDA approved in the US, but is used to treat seizures in Europe. Clinical trials look promising for Sadie's seizure types. One of Sadie's Aicardi friends, Josie, has used the medicine for years and it has worked well. We are hopeful that this new medicine will also work for Sadie.

We had Sadie out and about in the past few weeks. The photo above shows us at the finish line of the Epilepsy 5K Walk. Sadie also enjoyed her very first tea party for her friend Carmen's fourth birthday! The photo above shows Sadie in her fancy party dress with her Mimi. (Can you tell she likes her hands?)

The changes remind us not to get too comfortable. So, Sadie's journey continues as we change course...and change course again.