I thought it might be a neat idea to gather some numbers from Bug's year to wrap up 2012. I keep everything down in my calendar and keep a seizure journal that includes every seizure, bad day, sick day, medicine change, etc. So as I'm going back through these books there are some sad moments. I'm realizing that while most moms are driving their children to a park, I am driving Rayleigh to physical therapy. Or while other moms drive their kids to a playdate, I am driving Rayleigh to a doctor appointment. But I will keep on keeping on because all of those things are to help my sweet Bug! And that is exactly what we'll spend 2013 doing, and every year after this!
So, here are some figures from 2012.
- 8 Neurologist visits
- 2 Epileptologist visits
- 7 Pedatrician visits
- 2 Neuro-opthomologist visits (eye surgeon/doctor that also specializes in the brain)
- 2 Hearing tests - passed both!
- 4 Trips to the ER :(
- 2 EEGs
- 1 ERG (eye test done with probs on eyeballs while sedated)
- 44 Physical Therapies at Jim Thorpe
- 35 Occupational Therapies at Jim Thorpe
- 42 In-Home Occupational Therapies with SoonerStart
- 9 In-Home Vision Therapies with SoonerStart
- 7 In-Home Visits from OPAT
- 9 Months on the Ketogenic Diet (plus several months in 2011)
- 365 Doses of Melatonin
- 31 Medicine and/or Dose Changes
- 1 Surgery - to put in the Vagus Nerve Stimulator
- 812 Seizures - approximately - including Tonic, Partial Onset and Absent
- 1 DIAGNOSIS OF CDKL5
- 43 Sunday Suppers with the grandparents!
- 8 Trips to the Zoo
- 3 Family Photo Sessions
- 6 Seizure Free Days
- 1billion hugs and kisses :)
So there you have it, our year in a nutshell. Looks crazy all down in numbers and puts it all in perspective to me - gosh, it was an exhausting but fun year and there's another one ahead of us now!
HAPPY NEW YEAR!!!
Rayleigh Bug is now down to her last 2 weeks on Sabril (Vigabatrin). She will be on this medicine for a total of 2 months, give or take during the weaning process, when it's all said and done.
Last week Bug had her mandatory vision test. Eye exams are required by the FDA for any patient taking Sabril. For Bug, because she's only on the medication for 2 months, she was required to have one during the medication period and then she will have to have a second one done in August - a few months after she's done with Sabril. These eye exams are required because Sabril has several different side effects on vision.
The most common side effect on the eyes from Sabril is the loss or decrease of peripheral vision. If there is a decrease or loss to the peripheral vision due to the Sabril then it is permanent damage and will not be restored.
Other side effects include damage to the rods and the cones in the retina (that read light and darkness, black & white and color), overall decrease in vision and total loss of vision.
So, back to Bug! Last Tuesday she had an ERG (electroretinagram) on her eyes. Her pediatric neuro-opthomologist had her under anesthesia and placed small electrodes on her eyeballs. She sits in a dark room for 30 minutes to get a base reading on her rods and to calm the entire retina. Then they have a red light on to see how her eyes process that. Next is a soft white light, then a brighter white light, then a strobe light.
The test itself was really easy on Bug. She wasn't sore or anything for the electrodes and she wasn't nearly as groggy throughout the day like we thought she would be.
The ERG has to be evaluated by a trained person, computers cannot read it - yet, and it takes a while so we had a follow up appointment with her ped neuro-opthomologist (what a mouthful!) for that Friday.
During the exam Dr. Mike and his nurse used different lights and contrast tools for Bug to recognize and track and she did better than she usually does so that was enlightening! They also noted that her nystagmus has really calmed down, her eyes didn't shake once during the exam. It's very occasional now.
Dr. Mike explained that Bug's rods in her retina are responsible for seeing in the dark and seeing black and white images. Her rods are at 100%, so they're perfect and not affected by the medicine at all!
Then he said that her cones, responsible for seeing light and bright objects, are 1/3 to 1/2 depleted. He said that this could absolutely be caused by the medicine. He's not able to tell us for sure because she didn't have an ERG prior to starting Sabril so he doesn't have a previous test to compare these results to and see if it's something new or was always there. We really hope that the depletion was caused by Sabril because if it is then there is a good chance they will heal back to 100% after she's done taking Sabril.
Rayleigh is 1 month into her Sabril medicine. This is the new medicine she's on specifically designed to treat infantile spasms. She is responding really well to the medicine. It's a pain in the butt to give her, but she's responding well so we'll push through! It's only for 2 months - only 1 more month to go! She won't be on the Sabril (aka Vigabatrin) for longer than 2 months because of the side effects on her eyes. The longer she's on the Sabril, the higher her chances of poor vision.
She had her EEG a couple Fridays ago. This EEG was to compare her brain waves on the Sabril to the EEG in December. The December EEG was when we discovered she was now having infantile spasms - abnormal brain activity even when not having a seizure.
The most recent EEG shows improvement!
The Sabril is helping her. She is having less spike activity and way less spasms. In fact, the only spasms we've seen recently were head drops and they were only on days that she was teething pretty bad (stress on her body allows for breakthrough seizures/spasms).
Her brain activity is better but not all better. It is unlikely that the Sabril will completely normalize her brain activity since she's already been on it for a full month but it could still show more improvement.
Once her 2 months on Sabril is over we will wean her off Sabril.
Next plan of action could be 1 of 2 things: Increase Ketogenic Diet ratio to 4:1 (she's currently on 3.5:1) OR Start her on Vimpat, a different seizure control medicine.
Ideally, we'd love to go up on the diet ratio and give that a chance but that's all about whether her body can handle the added fat or not.
Rayleigh has an ERG scheduled at an eye surgery center at the end of this month. An ERG is an electroretinography or electroretinogram. It's to test her eyesight. Visual exams are required by the FDA during the course of taking Sabril. The ERG will be done at 6am under anesthesia. They will place small electrodes to Bug's eyeballs to measure electrical responses to the eye to look for any abnormalities. So I'll be posting again after that.
She's such a strong little girl and we love her with all of our hearts!!
