It was all about uncontrolled spasticity.
We have seen an increase in Owen's spasticity over the course of the last several months, mostly during periods where he was very uncomfortable - with illness, fatigue, constipation, teething, and reflux from the high fat ketogenic diet. We are fortunate to have a long-standing, wonderful relationship with Dr. M., an expert in spasticity management at UW/Seattle Children's Hospital, and this spasticity had been managed pretty nicely by him over the course of the last two and a half years with Diazepam. What we realize now, is that the pneumonia and GI distress quickly and acutely escalated Owen's spasticity to a level that was both painful and severely distressing to him. We now have an intimate understanding of how this type of muscle spasm/disfunction becomes both increasingly worse and more frequent during an acute phase like this when left untreated. We also learned that spasms in the feet - due to the number and complexity of muscles, tendons, etc - are especially painful. What Owen was experiencing was similar to a prolonged, intense charlie horse, most likely in both his calves and feet.
This is the issue that we suspected was at the core of Owen's discomfort, but not having experienced this type of acute escalation, and all of this on the heels of Owen having pneumonia AND the GI issues AND being on the ketogenic diet (which has it's own pretty serious, potential risks) AND being prone to seizures, it was absolutely imperative that we rule everything else out.
Botox injections are not an option for Owen's spasticity as they are really only effective in cases where there is very specific areas of spasticity. In Owen's case, they would have a difficult time determining whether to use the treatment in his hamstrings, calves or feet. And with "generalized dystonia/spasticity," Owen will probably never be a good candidate for botox both because of the nature of its (specific) application and the fact that it needs to be repeated on a regular basis. But never say never, right? So, Owen started oral baclofen three days ago. While oral baclofen does have side effects (which is why we've held off using it), we've been assured that it is "perfectly suited" to children like Owen (keeping in mind that no pharmaceutical is perfect) and the best thing for him right now. It will decrease the spasticity in his entire body but once he's adjusted to his dose, won't sedate him. His body will be free and his mind available. That is our hope.
In addition to baclofen, Owen was fitted yesterday for foot orthotics which will keep his feet in the neutral position. We have been trying out his "old" orthotics the last two days, which are much too small for him now, to see what effect they would have. They don't decrease the spasticity, which is to be expected, they do eliminate the extension of his feet into the downward flexed position. This has completely stopped the "episodes" of pain. The new orthotics will arrive later this week.
We were seen in the orthopedics clinic at Seattle Children's Hospital yesterday for Owen's spine and hip consult. The final read of Owen's spinal x-rays, the one from Fall 2008 being compared to the one from August 2010, indicates that his curve has increased from 41 degrees to 48 degrees. A decent increase, but certainly not terrible given the circumstances. The curve is in the lumbar region of the spine (curves in different locations affect different functions and organs). Growing rod surgery is most likely in his future, but we're not willing to say, right now, that it is a definite. But, thankfully, this procedure does exist. There are some risks, including fracture of the ribs where the upper screws and hooks attach, and dislocation and breakage of the rods. We will decrease the likihood of these happening if Owen's spasticity is better managed. MUCH better managed. It is obviously a long and complex surgery and they also prefer to see kids at a healthy weight in order to prevent any issues while under anethesia and to prevent infections. Plumper kids do better. Owen is far from plump. They indicated that he also has a good deal of flexibility in the area of the curve and if we are able to maintain this, keep his curve from worsening and maintain his very healthy pulmonary state, then there is no urgency to move forward with the growing rod procedure. These are challenging things to achieve in a child with no head or trunk control. What is most at-risk for Owen are his internal organs and the effectiveness of his pulmonary system - both of which can be compromised when scoliosis becomes severe. As a child with unsupported/untreated, significant scoliosis grows larger and heavier, the weight of the unsupported child compresses the organs and lungs. So we will keep on with stretching exercises, keep on with feldenkrais, keep on with cranial-sacral appointments, and with regular warm baths (he loves these so much, and relaxes so much, that a jacuzzi tub may be in our future - not a bad thing for ANY of us) and massage, massage, massage... Owen will have orthopedic follow-up appointments every six months and, in addition to the one we have scheduled in March, he will have a CT of the spine (under general anesthesia) to determine if, at that time, there is any deformity of the vertebrae which would make growing rods a more urgent issue.
After repeated blood tests, ultrasounds, several x-rays, numerous exams, consults, ER visits, in-patient stays and countless hours on the internet, what we have learned, and what is not at all surprising to us, is that Owen is actually very healthy. Aside from needing to gain significant weight (which we've been trying to advocate for for months now - calories are being limited by the ketogenic diet), and, of course, the curve of his spine, he's a sturdy little guy. He really is amazing.
I realized when I was forced to give up Owen's blog for several months earlier this year, that I blog not only for him, but for us, for our family, friends and for all of the families that we stay connected with. I always receive such valuable input and feedback when we go through these issues that are new to us - we feel like we're not going it alone. And we're not just receiving feedback and ideas from other parents with SN kids - which is always valuable in a very specific way - but also from so many of our friends and family members. We are so grateful for all of the support we've received these last few weeks. It makes such a huge difference. I only hope that these LONG posts, and the focus on Owen's life and complexities (as a family, we do tend to be pretty private people so this isn't always a comfortable process for me), assist other families in feeling more comfortable reaching out and finding solutions.
So now. We relax for a few days. Maybe even an entire week. Time at home. I need to get my hair cut. Elliot needs his hair cut. I need a massage. Elliot starts preschool, a Parent and Child Program, at Kingston Co-Op Preschool, on September 17th. Owen starts communication and motor therapy at Cascade Children Therapy on September 21st. I'm even more excited about this program now, knowing that Owen's spasticity will be better managed and his mind more relaxed and available (fingers crossed!). He and I will be in Seattle (Mill Creek) for his "school" every Tuesday.
Elliot and I read one of our current favorite stories this morning to Owen. Owen smiled and smiled. He is feeling better and, just as quickly as life became difficult, it has become easier.
We leave you with a little Moo Ba La La La.