Letter.

I just emailed a letter to the neurodevelopmental pediatrician who we adore and who we've worked closely with at Seattle Children's the last three years. This letter explains what we are certain it is that has been causing Owen's discomfort. I'm going to paste it below.

Tomorrow is our consult for Owen's hips and scoliosis and hence, our conversation with the orthopedic surgeon about the "growing rods." Will keep you posted...

Thank you - everyone - for your support via email phone, in person, via Facebook, Owen's blog... We've had offers of hugs, housing, food, hugs... It means so much. It gives us strength.

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Dr. M.,

It seems as though, through various clinic visits, home observations, videos, ER visits (the first on August 16th, and a second one yesterday), in-patient stays, etc. over the course of the last three weeks, we have finally determined what lies at the heart of Owen’s overall discomfort AND his acute episodes of pain.

We are in absolute agreement that Owen’s spasticity has increased and needs to be better managed. This increase in tone, especially in his legs and feet, has been developing over the course of the last year and his recent pneumonia/GI discomfort, in late July, created a shift from what had been variable tone to consistent high tone (again, mostly in his legs and feet), leading to a great deal of physical distress.

We are also certain that Owen has experienced an acute stress injury in his left foot, as a result of the almost constant downward flexing of that foot during these periods of high tone and flexion. His left foot has consistently, for the last two years, been the point of initiation for his full-body extension, especially during periods of distress (when sick, when receiving his food, when tired). We have witnessed now, over the course of the last four days (after an intense episode late Friday night), that full, strong flexion of this left foot causes pain, which causes increased tone which then causes increased pain, and higher tone until he experiences a great deal of pain in that foot and has” the episode” of being “paralyzed” with pain. The “episodes” that we’ve been seeing for three weeks now. During this acute episode, his foot “locks” in this flexed position. Breaking the extension by flexing him at the knee seems to help some of the time, although there are times when he is so stiff and extended, that we cannot even flex him at the knee. If we are able to bend him at the knee and break this pattern, his left foot then quivers, slightly flexing upwards and downwards until it finally “quiets.” His loud screams shift to constant crying. His left foot, for minutes and sometimes hours following these episodes (the prolonged one he experienced on Friday night lasted 30 minutes and almost prompted me to call 911), is incredibly sensitive to the touch – especially at the arch and the lower part of his heel. You are obviously intimately aware of the fact that Owen has absolutely no control of these episodes. They are terribly distressing to him. As I’ve mentioned, these episodes are now occurring even when he is in a good mood, alert and well-rested.

I have a couple of questions that I would like to address, as soon as possible, to make Owen more comfortable and to avoid any additional injuries and pain. We do also have an appointment with you on November 10th, so will obviously follow-up on these issues, and current interventions, at that time as well. As I’ve also mentioned, we’ve been unable to get him out much of the time the last three weeks due to his discomfort and the unpredictability of these acute episodes. This has impacted Owen, and our entire family, to an enormous degree.

1. The increase in Diazepam, which we have been using in conjunction with you for two years to manage Owen’s spasticity, DOES indeed help to alleviate the acute episodes where Owen becomes stiff with pain after repeated flexing of his left foot. Unfortunately, though, it also heavily sedates him. It has been necessary to administer upwards of the additional 2 mL that you suggested last Tuesday (your suggestion was to use as little as possible, but as much as needed, of that 2 mL),the last couple of days, to avoid these acute pain/left foot extension episodes (in addition to the 5 mL used previously for spasticity management). The administration of this additional dose is oftentimes necessary even when his overall demeanor is calm and he is well-rested and happy. This is distressing to Owen, to myself, to other members of his family as he is mush of the time, happy and calm otherwise. That said, the Diazepam dose stops the flexing of his foot. Once the additional Diazepam is administered, Owen is then frustrated at being over-sedated, and in a state where he loses what clarity he does have, cannot sleep and just whines and whines in his bed. How can we calm his body without sedating him and also calming his “mind?” I ask this knowing that the two are virtually inseparable…

2. I would like to discuss the possibility of botox injections for his left foot (and possibly in both feet since his right foot is now also increasingly involved in the flexion episodes) in conjunction with fitted orthotics for his feet to decrease the muscle spasms and pain and to try to eliminate the flexion and extension through his feet and legs. My sense is that if we use orthotics exclusively, Owen will continue to flex his feet and apply pressure to the orthotic, further aggravating the pain in his foot.

Sincerely,

Stacy Marshall

Four weeks.

July 23rd: Owen diagnosed with his first bout of pneumonia. He's prescribed two, heavy duty antibiotics. Kelsey and I say between ourselves, "Wow, the fact that this is the first real episode of respiratory illness, bodes well for Owen. Hopefully, the antibiotics will knock it out quickly." We listen to him gurgle, crack and cough the next several nights.

July 28th: Severe GI distress and diarrhea from the antibiotics. SEVERE. This is also the start of severe sleep deprivation for Owen and his parents. Elliot sleeps perfectly. Twelve hours a night. Uninterrupted.

Late July: Owen begins having spells where he gets really fussy, arches, cries, goes rigid, gets red in the face and then screams and screams with a look of terror on his face. He becomes paralyzed with pain. Is it pain? Fear? This happens most frequently when he is upright in his stroller or in his car seat. So. We stop taking him anywhere unless we absolutely have to. We take video of the episodes and start looking for answers. Elliot has taken to running up to Owen, when he hears him crying out, saying "Owen, Owen," and then "Pat, pat." He pats him gently on the chest hoping that this will soothe him.

Early August: We are giving Owen probiotics, soaking him in epsom salt baths, trying to get him to his cranial-sacral and feldenkrais appointments. But inevitably, while in the car, he has a spell. I have to pull the car over, take him out of his car seat and try to soothe him. What ARE these episodes and why can't we think our way out of this one?

August 16th: Enough of this. Off to the ER. Pack up Owen. To Seattle Children's Hospital. Pack up Elliot. To Oma and Grandpa's house. X-rays, blood draws, oxygen saturation monitors. "We can't find anything wrong. If the episodes get worse or more frequent, come back." "No. You don't understand. I can't get out of the house with him. Something is wrong. He's horribly uncomfortable." They agree to admit Owen. We stay two days.

August 17th: Day of discharge. Owen is constipated. So much so that the attending physician, during rounds, says to the team while showing everyone the films of Owen's little abdomen, "Folks, that's a lot of poop." He also has eight teeth coming in and when he has these "episodes," clenches down on his erupting molars and surrounding tissue so much that they are a bloody mess. He opens his mouth and looks like a prizefighter. Miralax for the constipation. Tylenol for the teething. Home.

August 18th: At home the episodes persist. No sleep for anyone except Elliot. And Dutch. Lucky dog.

August 20th: Make calls and send emails to specialists' offices at Seattle Children's. "Owen is trying to tell us that something is wrong. We need help figuring out what is going on. Will you help us?" One is kind enough to see us the following week, even though he's booked out through 2010. Thank you, Dr. M.

August 24th: Dr. M. says, after viewing Owen and looking at the video. "We don't want to mask this with medication. We need to find out why he is in pain" Thank you. "Owen is trying to tell us that something is wrong." Thank you. More labs ordered. More blood drawn. Another abdominal x-ray. Abdominal ultrasound ordered.

August 26th: At Seattle Children's Hospital again, all day, except for an 8:30 neurology follow-up at Swedish. Owen and I have crashed at the Silver Cloud at Broadway and Madison Wednesday night (eight down pillows PER bed!) since trying to do an appointment while overnighting at home would have required a 4:00 a.m. wake-up call from Dutch. Nope. Neurology visit goes well. Owen will begin the year-long wean off of the ketogenic diet in mid-September. IF we can stabilize him. Owen has an abdomnal ultrasound to look for problems with kidneys, pancreas, gallbladder... At his orthopedic appointment, after a review of the spine and hip x-rays, we learn that his scoliosis is bad. Really bad. Fifty-five degree curve. They recommend that a "growing rod" be attached to his spine. A metal rod that is surgically inserted and screwed in at the top and the bottom of the spine. On the ferry, on our way home, Owen has another episode.

I say, "enough already!" Geesh.