Tuesday, February 19, 2013

Target Seizure Style

February 6th started early with Addie waking up at 5am. She usually sleeps til 8:30-9am but not this night. We finally brought her into bed with us and she really didn't go back to sleep. I noticed she felt warm so when I got up to get Gray to school, I took her temp and it was around 100.5. Ordinarily I wouldn't worry about it but she had ear drainage the week before. Her pedi had called in antibiotic drops since she has tubes... so we were able to avoid an office visit or a full round of antibiotics. But one of the instructions from the nurse we spoke to was any fever, bring her in. I called the pedi right at 8am and got her first available appt at 10:10am.

I called my sister and asked if she wanted to play hookie with me that day and do some shopping after the appointment. Addie was acting fine and I felt like the doctor's visit was just a precaution with such a low grade temp.

My sister was able to join me and we went up the doctor's visit. Sure enough, she was diagnosed with a simple virus, not related to her ears at all because they were both clear. Her flu swab was negative, throat looked good etc. So we were sent on our way. Addie was acting fine. Talking to the nurses, walking down the halls etc. 

We made our way to the car and headed across town to the Target over by my sister's house. Addie fell asleep in the car. We were prepared to take turns going into Target to let her sleep but right as we pulled into the parking lot, she woke up. Melissa got her out of her car seat and it was our hope that she would fall back asleep in her stroller as we pushed around Target. Addie looked pretty sleepy and mellow, so I felt like she'd be out in no time. Something we had done numerous times. We scored a rockstar parking spot just 3 spots from the front door and headed in. Before I could even get to the cosmetics and holiday aisle of Target, I noticed Addie wasn't looking around much. I thought she had fallen asleep already. I leaned down to check on her and saw immediately that her eyes were jerking to the side. Never having seen one of her seizures start before (having always found her mid seizure in her bed), I did not know if this was a new type of seizure or the beginnings of her 'usual' seizure. I knew immediately it was a seizure but did not know if it was going to go into a Tonic Clonic seizure that would need Diastat. Melissa had stepped to the rest room. Before she could even join me, Addie threw up. I knew as soon as she vomited that she was going to have a full convulsive seizure so I immediately turned the stroller around, caught Melissa at the $1 bin area and headed to the car. I had her Diastat with me but felt we were better suited to take care of her in the back of my car than in a public restroom in Target. 

I estimated that the seizure had maybe lasted a minute at this point so I got her out of her stroller and put her in the back of our SUV. I timed two more minutes on the second hand of my watch, all the while turning her on her side, talking to her, taking off her shoes, socks and jeans, and preparing the Diastat pen. As soon as she hit the 2 mins timed mark, 3 mins total, I administered the Diastat. We have instructions not to call 911 unless the Diastat doesn't stop it in 3 mins.  I began timing her again. Melissa was talking to her the entire time, as was I, and Jack was in the back seat of the Mitsubishi watching. I am so thankful that he is calm under pressure and knows when to stay quiet and out of the way. But it breaks my heart that he has to see her like that. I had my cell phone in hand and when Addie hadn't stopped seizing at the 3 mins mark, I dialed 911.

I'm not entirely sure how long it took the Diastat to work on her last seizure (back in December). Time is a funny thing. It seems to go on much longer when you are literally counting each second tick. Her last seizure was at home and I had to run and find a cell phone and then start the timer and then start timing. I wasn't wearing my watch and watching each second. I think this seizure took longer to stop but I can't swear to it...

I do know that before the 911 operator could transfer me to the right county dispatcher, it had thankfully stopped. Right at 3:30 mins. This seizure seemed different. It was only her left arm that was jerking not all four of her limbs. It seemed to me her eyes weren't as out of it, she seemed more aware this time. This could be because she is on Lamictal and was up to half of her therapeutic dose.  Or it could've been that I caught this seizure sooner than the first two and I administered the Diastat much quicker than the last time. I don't know. All good things to talk to Dr. K about when we see him again. 

The ambulance was already dispatched at this point so we stayed on the line with the dispatcher and counted respiration rates while we waited. She gets pale but doesn't turn blue... Thank God! They carried her into the ambulance and she was satting in the low 90s, her blood sugar was 86, temperature 101.6. They wanted to attribute her seizure to her fever, which I realize is entirely possible, but she's had much higher fevers before, after her epilepsy diagnosis and never had a seizure with a fever before. So I wasn't convinced. She was coming around a lot more quickly, another good sign that I hope means her Lamictal was partially working. She had some odd eye movement though, which could have been a partial seizure after the convulsions stopped, or could've been just Addie's eyes, but it was enough for the paramedics to want to take her into the hospital and I wasn't about to refuse being away from home.

I rode in the ambulance with her and Melissa drove Jack and followed behind us. This ambulance ride was much different than the last one. No sirens, Addie was much more responsive, I had been there done that before and it wasn't as big of a deal. Don't get me wrong, no one wants to ride in an ambulance with their child, but this time wasn't nearly as scary as the last time. I could see she was ok. I had already seen her recover back to her baseline from a seizure. This seizure wasn't as scary looking. But for the record, seizures still suck.

We rode to Dell Children's and were put in a trauma room. Adam joined us shortly after we got there and Melissa stayed with us, holding Addie while she slept. Addie's temp was up to 102.6 so they ran a urinalysis to check for a UTI and gave her some Tylenol. We stayed for about 4 hrs and were sent home. Her tests were negative for UTI and we were told to follow up with her pedi if the fever persisted for more than 3 days. The attending at the ER got Addie's neuro on the phone and the neuro said not to worry about a break through seizure until she's up at her full dose of Lamictal. If it happens again after that, we will have to look at adding in another seizure med. 

Overall, I have to say I was thrilled with our care at Dell Children's and by our local EMS. We've been at a few hospitals over the last 21 months and Dell Children's in Austin was by far our favorite. And I'm not just saying that. So happy to call it our home hospital. 

Addie was walking around and talking, a little stoned on her Diastat still, but overall fine when we got home. She stayed with Adam and took a nap and I ran back to Target to get the thing I had went to get in the first place -- her video monitor had broken the night before and we had to spend a night with audio only. The silver lining, I guess, was that the seizure happened in the middle of the morning and not at home with a broken video monitor.

We are now at full dose of her Lamictal. I hope and pray that the small improvements we saw in her seizure on Feb 6th were a result of the partial dose and that being at full dosage will keep them at bay. I find it extremely interesting that her seizures are happening almost 2 months to the day apart. Sept 28, Dec 7, Feb 6th. Something else to talk to Dr. K about. I also find it interesting that while it didn't happen in the morning waking in her bed, it did still happen waking up from a nap. And that she was sleep deprived this time as well. At least somewhat from waking up at 5am and not going back to bed. Of course, the fever is note worthy as well. As Dr. K said, we don't want more seizures, but the more data points we have, the more we can extrapolate what potential triggers she may have.

We are very blessed to have family so close, a job that Adam can leave in the middle of the day if necessarily, an ex husband I can call at the drop of a hat to pick up Grayson, a middle son that is calm under pressure and super well behaved in an ER for 4 hrs and an awesome medical team both in our doctors and our home hospital. Seizures may suck, but we have an awesome plan in place and support system around us.

Sleeping off the Diastat, waiting on the test results

Waking up and wondering what was on her arm

Jack wanted to be by his sister... 

Ready to bust out of this joint! She was up walking around, and pressing her nose to the glass watching the nurses walk by.

Friday, February 8, 2013

Eye Yi Yi

Addison had her ophthalmology follow up on Feb 5th. It took Dr. R about two looks at her to decide Botox is our next best option. We've been going back and forth about the Sixth Nerve Palsy (read more here) diagnosis and it seems that we have officially settled on it. There was some debate about whether this was a new development (which would mean she was currently under pressure intercranially speaking - which her neurosurgeon and optic nerve exam showed were not the case) or if this was some how hiding behind all her other eye issues. I had thought it was the later and Dr. R agrees. Basically, it's impossible to tell an eye can't turn out past midline if it's always turned in. So now that we have improved Addie's right eye enough to not turn in all the time, we can tell that she can't turn it out. Which makes it look like her left eye is turning in, when in fact it's her right eye that can't turn out to keep them aligned. 
The eye diagnosis is a challenging one and takes time. I feel pretty good that we have a plan in place. Addie is scheduled for Botox injections into her right eye on March 14th. We will be doing this at Children's -- no outpatient facility for us! However, it should be a fairly short procedure. She will be under general anesthesia gas but shouldn't need to be intubated or have an IV placed. Both good things! 

Waiting for Dr. R. Addie was determined to get her backpack out from underneath her stroller.