Hello Everyone and Happy Holidays. Again, so much time has passed and so much has happened since my last update. We were very busy with the new baby and visitors thru October. Then, November somehow came and went in a flash. And now, December seems to be doing the same.
We’ve had a lot of ups and downs with Nathan. We are on the 4th anti-convulsant medication for his seizures with no success as of yet. Unfortunately, each med has its own set of side effects and has worsened his personality and disposition. In fairness to the medical profession, the side effects could also be from the seizures themselves instead of just the medication. But, the seizures seemed to have increased since we’ve begun all the medication. We’ve also started trying a few more alternative approaches such as giving him vitamin B6 and doing cranial sacral therapy. The bottom line for Nathan though is that he has lost so much of the strength and development that he had gained over the last year to this crazy disorder. We hope that he can gain it back, but we must first get either his meds or seizures under better control. After Christmas, we will make the decision whether to do steroid therapy for the seizures which will be the worst from a side effect perspective, but has a much better chance of making a positive impact. There is another drug that is not FDA approved, but is widely used in Canada and Europe to control this type of seizure. The dilemma with taking this drug is that it has about a 25% chance of causing blindness or visual impairments. Since Nathan is already significantly visually impaired, we are scared to have him take a medication which has such a big chance of taking what little vision he has away. We pray for the right answer to hit us over the head so we can make the best decision for all of us.
This last week was a very scary week for us. Jim was on a business trip in Seattle. Nathan had (what we believe to be) some type of seizure that lasted 30 minutes. After about 10 minutes and a call to the neurologist, we took off for the ER. The seizure stopped by the time we arrived, but he developed a fever during the seizure, so the ER took it very seriously. The ER docs started running around doing multiple tests, including a spinal tap. There was a lot of talk of meningitis, pneumonia, and other types of bacterial infections. In the meantime, Nathan was completely listless. He did not even make a sound or flinch when they pricked him with the needle to numb him for the spinal tap or to start his IV – which seemed to concern everybody (including me). Hours later, the conclusion was double pneumonia with no evidence of meningitis. However, as of today we are still awaiting the results from the final cultures, just to be safe. He was admitted to the hospital, but was discharged the next evening after 24 hours of IV antibiotics, steroids, and observation. When all was said and done, it was not near as serious it seemed and the hospital staff was quick to treat what could have turned bad. However, I will never forget the feeling of helplessness stemming from the horrible prediction of Nathan’s life’s prognosis and the look of him so listless and frail. We had been so fortunate for a year that Nathan had not been seriously ill that I began taking it for granted. The harsh reality of juggling 3 kids, hospital ER’s, and news I was not sure I could handle hit me pretty hard – all while Jim was out of town trying to get on a plane to return.
Now for the good and fun news – we had very nice visits with my parents and my sister (2 separate visits) this fall. The kids had a great Halloween complete with costumes and trick-or-treating with Aunt Gloria. Nathan fell asleep after the 1st house, but Zachary and Madison could have continued all night. Zachary is hitting all of his developmental milestones, mostly early to my great relief. I’m not sure if I will ever completely relax without fear that Nathan’s issues are genetic and could somehow affect our other 2 children. Madison is loving kindergarten – she is reading and writing and has also joined the girl scouts. She is so excited for Christmas and Santa. Zachary laughs and smiles all the time. He is the most curious creature I have ever seen. His personality is really shining through. He especially enjoys watching Madison dance and be goofy for hours (well, maybe 45 minutes before getting bored). And, he FINALLY started sleeping for more than a 4 hour stretch at night a couple weeks ago – Whew!I can’t believe it is time for me to return to work in 2 weeks. My to-do list is still a mile long, but I keep telling myself that the important thing is spending time with family and friends and enjoying life. We are back to the more normal events of our lives – going out to eat, going to the zoo, parks, playdates, friend’s homes, etc. I’ve even read a few novels. Today we took the kids to see Santa Claus (he was really a Shriners clown that moonlights as Santa during the holidays, so was great with Nathan) and we did a little bit of shopping. We are hosting Jim’s family and Nathan’s nurse & husband for Christmas Eve and plan to spend a nice quiet Christmas day savoring the true meaning and memories of Christmas.
Love, Jim, Tricia, Madison, Nathan, & Zachary
Which brings us to Nathan. Right before Zach’s birth, Nathan began having seizures again. They really picked up after we came home from the hospital and now he is having about 25-50 seizures per day. They are a version of infantile spasms, which are not immediately medically threatening. However, we know that each seizure may cause a set-back in the brain. Since the seizures began again, Nathan’s sleep patterns have worsened and his daytime disposition is hit or miss. Some of the strength he had previously gained has gone away. We are going through trial and error with various meds to control the seizures and are on our 3rd medication with no improvement so far. There are a few more meds we will probably try before giving it a rest for awhile. There is no conclusive evidence on the damage these seizures can cause to someone that already has brain impairments versus the damage of the medication’s side effects (not to mention the quality of family life). So, we will just make our own decisions as we go. Aside from the seizures, Nathan had a very healthy summer and is just now on his first cold in many months.
