Dear Friends and Fam,
Happy New Year! I did not mean to leave you all hanging for so many months wondering how Nathan’s major medication changes played out. Time just keeps going so fast and every day brings new challenges or hurdles to climb for Nathan and the rest of us.
When I last left off, Nathan’s seizures had improved but his behavior had become worrisome. He was not sleeping (ever – it seemed), and was hollering out non-stop. Then, things improved dramatically for a couple months. We were at a very good seizure place, for Nathan. I never in a million years would have thought that 10 seizures per day was a good place to be. But, everything is relative in our world. Nathan calmed down and seemed to be genuinely happy. He began sleeping through the night (thanks to our friend, Melatonin) and staying awake/alert through the days. He was doing amazing in school - using 2 switches, smiling, playing, walking backwards in his gait trainer, using his hands for exploration, etc…
But then, gradually the honeymoon period of this new drug wore off. His seizures came back. Not quite as bad as before, but enough to begin making him more lethargic and less interested in the world. We chased the dosage of this medication, as we have done so many times in the past. But as history continues to repeat itself, chasing a dosage does not help.
During this period, his torticollis became worse and he began losing the ability to hit his head switch as frequently because his neck was so tight. This is critical to Nathan’s quality of life as the head switch is his access to the world – toys, communication, etc.. We decided to have botox injections in his neck to loosen this muscle and hopefully give him more head range. Now, many of you are thinking “cool – botox injections”. I was thinking about the risk of botox injections in the neck of a 5 year old. As always, Nathan was a trooper and did amazing. The injections did loosen up his neck which is great, but it caused him to lose a lot of artificial strength in his head. He is back to dropping his head all the time, and especially worrisome is the head dropping in his wheelchair when I’m driving him to appointments without someone else in the car to help. I’m back to pulling over on the highway to fix his head so we can continue our journey. We are going to wait another month to determine if we do repeat injections as the botox wears off about every 3 months.
Next on the ever growing list of medical challenges is that his adult teeth are ahead of schedule. Really? We are preparing for extraction of 6 of his baby teeth to make way for his over-sized adult teeth that are beginning to cut into the roots of other teeth. The dentist and his doctors think we can do this under local anesthesia in the dentist office, so we hope all goes well with that.
Probably the most worrisome news right now is that he, at 5 years old, is already starting puberty. This may be the cause of the worsening seizures, but we don’t know for sure. We still have to have him evaluated by a pediatric endocrinologist (another hurdle). But a few of the tell-tale signs are there which is pretty undeniable. We know that many children with CP enter puberty early, but 5 years old seems really unfair to Nathan.
For the good news. He has remained healthy over the holidays and the winter season to date. We finally completed our bathroom remodel for roll-in shower accessibility. This was so exciting for us as we never liked the downstairs tiny bathroom to begin with. It was hideously designed with tile, linoleum, fixtures, and wallpaper from the 80s, even though our house was built in the 90s. So, we got to design from scratch, knock out a closet next to the bathroom to give us more space, and build a roll-in sloped tile floor with an extra large shower giving
Nathan, his caregivers, and the rest of the family the flexibility and functionality of a 'luxury' bathroom. Now, if only we could remodel the rest of the house…
But then, gradually the honeymoon period of this new drug wore off. His seizures came back. Not quite as bad as before, but enough to begin making him more lethargic and less interested in the world. We chased the dosage of this medication, as we have done so many times in the past. But as history continues to repeat itself, chasing a dosage does not help.
During this period, his torticollis became worse and he began losing the ability to hit his head switch as frequently because his neck was so tight. This is critical to Nathan’s quality of life as the head switch is his access to the world – toys, communication, etc.. We decided to have botox injections in his neck to loosen this muscle and hopefully give him more head range. Now, many of you are thinking “cool – botox injections”. I was thinking about the risk of botox injections in the neck of a 5 year old. As always, Nathan was a trooper and did amazing. The injections did loosen up his neck which is great, but it caused him to lose a lot of artificial strength in his head. He is back to dropping his head all the time, and especially worrisome is the head dropping in his wheelchair when I’m driving him to appointments without someone else in the car to help. I’m back to pulling over on the highway to fix his head so we can continue our journey. We are going to wait another month to determine if we do repeat injections as the botox wears off about every 3 months.
Next on the ever growing list of medical challenges is that his adult teeth are ahead of schedule. Really? We are preparing for extraction of 6 of his baby teeth to make way for his over-sized adult teeth that are beginning to cut into the roots of other teeth. The dentist and his doctors think we can do this under local anesthesia in the dentist office, so we hope all goes well with that.
Probably the most worrisome news right now is that he, at 5 years old, is already starting puberty. This may be the cause of the worsening seizures, but we don’t know for sure. We still have to have him evaluated by a pediatric endocrinologist (another hurdle). But a few of the tell-tale signs are there which is pretty undeniable. We know that many children with CP enter puberty early, but 5 years old seems really unfair to Nathan.
For the good news. He has remained healthy over the holidays and the winter season to date. We finally completed our bathroom remodel for roll-in shower accessibility. This was so exciting for us as we never liked the downstairs tiny bathroom to begin with. It was hideously designed with tile, linoleum, fixtures, and wallpaper from the 80s, even though our house was built in the 90s. So, we got to design from scratch, knock out a closet next to the bathroom to give us more space, and build a roll-in sloped tile floor with an extra large shower giving
Nathan, his caregivers, and the rest of the family the flexibility and functionality of a 'luxury' bathroom. Now, if only we could remodel the rest of the house… This is the new year, and as I write about all of our challenges, I am reminded that we do continue to count our blessings and look forward to a wonderful 2011. We are blessed with 3 unique children, and wonderful family and friends that have helped us through everything on this unplanned journey. We are blessed to have kept our jobs (and health care insurance) this year thru the economic downturn. We know of so many tragic events that have impacted family, friends, and strangers alike this year and we try not to take a single day for granted. Nathan keeps showing us how to weather each storm with a sweet smile and so much unconditional love. He has brought amazing people into our lives and has helped us to understand that every day is a gift.
We wish all of you a joyous, peaceful, and prosperous year.
Love, the McCues
