Loving Owen: September 2013

Owen had another EEG on Wednesday afternoon. By my count, in his two short years, he has now completed six EEGs. The good news is he really enjoys them! Owen loves having his head touched and rubbed, so having sensors glued on to it is like a giant massage for him. The past month has brought increased seizure activity and irritability. After a few months of Owen being in a fantastic mood, he is reverting back to the archy, screamy, crabby, awake little boy I know so well.

It comes as no surprise that his seizure diagnosis has progressed from Infantile Spasms to Lennox Gastaut Syndrome. Here is the information about this syndrome as described by the National Institute of Neurological Disorders and Stroke (NINDS):

What is Lennox-Gastaut Syndrome?

Lennox-Gastaut syndrome is a severe form of epilepsy. Seizures usually begin before 4 years of age. Seizure types, which vary among patients, include tonic (stiffening of the body, upward deviation of the eyes, dilation of the pupils, and altered respiratory patterns), atonic (brief loss of muscle tone and consciousness, causing abrupt falls), atypical absence (staring spells), and myoclonic (sudden muscle jerks). There may be periods of frequent seizures mixed with brief, relatively seizure-free periods. Most children with Lennox-Gastaut syndrome experience some degree of impaired intellectual functioning or information processing, along with developmental delays, and behavioral disturbances. Lennox-Gastaut syndrome can be caused by brain malformations, perinatal asphyxia, severe head injury, central nervous system infection and inherited degenerative or metabolic conditions. In 30-35 percent of cases, no cause can be found.

Is there any treatment?

Treatment for Lennox-Gastaut syndrome includes anti-epileptic medications such as valproate, lamotrigine, felbamate, or topiramate. There is usually no single antiepileptic medication that will control seizures. Children who improve initially may later show tolerance to a drug or have uncontrollable seizures.

What is the prognosis?

The prognosis for individuals with Lennox-Gastaut syndrome varies. There is no cure for the disorder. Complete recovery, including freedom from seizures and normal development, is very unusual.

Owen demonstrates all four seizure types many times a day. We are sad for our guy that he continues to be on such a steep downward trajectory. The good news is the prognosis of his cuteness remains excellent as demonstrated here:

Owen has checked 'Day at Santa's Village' off of his bucket list. On the Saturday prior to Labor Day, our family journeyed in to the mountains of New Hampshire to find our own version of the North Pole. We were lucky enough to bring along Ellie's Godparents (and my cousin and cousin-in-law), Kevin and Carrie. It was a great day for our family and I am so thankful we were able to have Owen join us. After a long day of mini-donut eating, water slides, twirling rides, and reindeer feedings, we drove west to Littleton, NH to stay at a hotel with an indoor pool. This was Ellie's first hotel/pool experience and she really enjoyed swimming the night away.

Owen did not take a dip, but he did sit in a lounge chair pool-side with me for part of the evening. At one point, a family came into the pool area and almost immediately surrounded Owen and me. At first I was a bit confused about the attention, but after chatting with the mom and her lovely son it was apparent that a great moment with Owen was unfolding. This family was also at Santa's Village and had noticed Owen and our family. They wanted to come over to us to say hello, but decided to give our family some privacy. Seeing us at the same hotel that evening provided them a moment to introduce themselves and share their story. Before me stood a lovely young man who manages some serious medical challenges. He proudly showed Ellie and Owen his scar on his belly where he once also had a g-tube placed. He spent time touching and talking to Owen and sharing his story with us. It was amazing to see what kindness, compassion, and interest this preteen boy demonstrated to my children. I can only hope that someday Ellie will behave with the same grace and maturity. It was a great experience to wrap up a wonderful day as a family enjoying a traditional New England vacation.

In other 'Owen News', he has developed a granuloma around his g-tube site. Apparently, this is very normal with new g-tubes and we have been visiting Owen's wonderful peditrician to slowly burn it off with silver nitrate. Owen has also needed his anti-seizure medications adjusted. The past two weeks have brought near constant seizures. Owen has gained a bit of weight, he is now up to 18.5lbs. My hope is we are not seeing increased seizure activity, rather a need for more medication due to weight gain. We will be visiting the neurologist on Monday so I will know a bit more then. Owen seems to be developing what I have labeled 'phantom fevers' over the past month or so. He will spike a 101-102 fever out of the blue, but it will then go away with no other symptoms. Motility continues to be a concern- I noticed twice yesterday that he had green liquid in his belly when opening up his tube. This is concerning because he does not have regular or frequent bowel movements. We are also now venturing in to the area of pressure sores. This has always been a back burner concern, but he seems to be developing redness on his buns, hips, and tailbone area after just 20 minutes of being in one position. We are now needing to adjust his position every 20-30 minutes to help prevent breakdown of the skin. He is also sharing 2-3 projectile vomits with us each week. I am considering handing out plastic ponchos for people who come to visit us at our house.

These are the medical concerns I really hoped and prayed we would avoid with our sweet boy. I long ago gave up any control on this journey. We are just continuing to provide love and care for Owen. When awake and alert, he seems very attuned to his surroundings and is so lovable. On Sunday, I will be running a half marathon in honor of Owen's birthday and for another sweet little girl, Lizzie. Last year, my friend Jenny and I ran a 5K on the anniversary of Owen's diagnosis. I decided to set a goal of a half marathon to celebrate Owen turning two. It amazes me that my guy is already a toddler- let the tantrums begin...