New Concerns, New Treatments
Dr. Facchini called Friday after I'd reached out to him for help. Despite our best efforts with the Keppra (Levitericetam) and Phenobarbital, Hudsyn continues to have seizures...sometimes upwards of 30-40 a day. They don't ever last longer than a few seconds each, but they cluster. And our biggest concern with this was that she wouldn't be able to physically continue to develop like she should. They were getting in the way when she would practice her skills (reaching for toys; rolling to her side; etc). Lately, we've also started noticing how much further along other kids are than she is. It's been especially hard to see kids younger than her who are more advanced physically with their skills (rolling over, sitting up, babbling consistently, tracking, etc).
She also added a new seizure we now call Super Girl. Unlike Hamlet, she puts her arm straight up and tucks/bends her opposite arm like she's a super hero. Her neck will jut forward as well. She can't be distracted and her eyes will usually lock in place until it passes. You can't break her muscle hold when she's in it...she's very strong.
Facchini asked if the seizures were worse in the morning or evening. I told him they'd cluster more in the evenings, but for the most part they were constant, happening at various, unpredictable times of the day. The only pattern we've really been able to determine is that she has more when she's overtired or approaching her next dose of medication.
He recommended we put her on Topamax. My heart dropped a little when I heard this.
A few weeks earlier, I was talking to a friend of mine at church who has a nephew that's on the drug. He's in his 20's and has been on it since he was 10 or so, dealing with massive, grand mal seizures. She described to me that although it works well to control his seizures, he's unable to hold down a job, that his cognitive abilities are severely repressed because the drug "dumbs him down" a lot. He sleeps more than most people should at his age. Their family calls it the 'stupid' drug. And she told me, "As long as she's not on that, I'm sure things will work out."
So when I heard Facchini coolly state that she would take it twice a day at 1ml each and gradually increase the dose to 3mls twice a day, I couldn't really focus. I didn't want to hear this. I quickly asked him about the side effects. He didn't mention anything close to what I'd heard my friend talk about. And although that should've comforted me, instead it made me skeptical.
After the phone call, I quickly got online to research this drug a little more, especially in how it might affect an infant. There were a few stories of side effects like my friend described, but actually I read worse about Keppra and how babies react with angry, violent cries...in addition to really sad cries out of the blue. (Our Miss H has had both of these in the last month. The sad cries break your heart...it's the saddest cry you've ever heard.)
I found one story that was very similar to ours. A baby started experiencing seizures at 3 months of age, they put her on Keppra and Phenobarbital. It worked for a little while, but then the seizures increased. Topamax was prescribed because it was said to help the myoclonic seizures (the muscle jerking) better than the other drugs. The baby became seizure free.
The concerns I have with all of this are these drugs. They give them to babies like they're milk. Yes, these are experts in their field. Yes, they know infants specifically. But the human brain is still a very unknown thing. What if in 10 years they find out that one of these drugs is detrimental to a baby's development...or worse, their ability to live a normal life? I don't want my daughter to be a lab experiment or have a harmful, long term side effect we don't know about yet. This is a possibility.
I question things. I look for information in addition to what all these experts are telling us to do. Because I know that she chose us as her parents for a reason. We were blessed with this particular life, because we would fight for her and continue to seek the best treatments possible beyond what the typical western medicine docs would (and could) recommend.
Jin Shin Jyutsu Jin Shin Jyutsu physio-philosophy is an ancient art of harmonizing the life energy in the body. I think of it as something similar to acupuncture (eastern healing and uses pressure points in the body) but without all the needles. A dear friend introduced me to this way of healing several years ago. I had even gone to a practitioner here in Kansas City every month when I was experiencing a lot of back pain and going through my allergy treatment. It seemed to help quite a bit...and above all was extremely relaxing.
Chiropractor Dr. Rissman from Natural Way Chiropractic has been working on Dan and I for nearly a year now. And when I became pregnant, his help was instrumental in keeping my body in alignment and healthy for nearly 10 months. When H was born, it wasn't a question that he would also help her. Some studies connect colic, unusual crying, ear infections, poor appetite, and erratic sleep habits as signs of possible spinal imbalances. Chiropractic can help all of these issues.
Craniosacral I sought out Sheri from At the Healing Place a few weeks ago as a referral from Turning Point (a very reputable treatment center here in KC). Miss H had her first appointment Monday.
Cranio-sacral therapy (CST) is another gentle, hands-on method of evaluating and treating the body. It specifically focuses on the functioning of a physiological system called the craniosacral area - comprised of the membranes and cerebrospinal fluid that surround and protect the brain and spinal cord.
Sheri was great and walked us through the entire treatment, which was really quite simple. She did various "holds" with her hands on H's head and spine. At first she was pretty fussy with the new environment, person holding her and not really knowing what was going on. Plus it was close to regular feeding time with me. But as Sheri continued to work with her, she calmed quickly.
After about 20 minutes, Sheri let us know that our little girl was doing great. That she was very frustrated because she was in a body that wasn't doing what she wanted it to do. Her "butterfly plate" (in her head) was out of alignment along with her sacrum. Once these were adjusted, Miss H became extremely relaxed...and happy. She smiled a lot after the appointment. We'll be going back next week with the hopes that we will continue to see improvement in her motor skills.
We believe in taking advantage of all treatments available - eastern and western. That by accessing the "buffet of experts," our beautiful gift will eventually find her place and be happy and active living her life.