Hello! I know it has been a while...my apologies! Well...last week we visited Riley (again) to talk with the Neurology department. We still have no diagnosis. What results we do have back from the spinal tap and blood draws have came back negative...but we are still waiting on a few tests! What we do know is that Nicolas has infantile spasms which are a form of seizures. He will outgrow them sometime between now and three years of age. There is limited treatment options for these and they rarely work. Once he outgrows infantile spasms a new form of seizures will take the place of them...at that point we will need to do another EEG to determine what kind and then more medications will be available with a higher success rate. Right now he is currently taking Topamax for the spasms. In 14 days we will know if it is working or not. Once we get the brain to stop seizing Nicolas will have more opportunities to develop...However through our three therapy sessions a week we have already began to see progress. It has been fun to watch! We have appointments scheduled at Riley once a month through December. I'll keep you informed once we return from each visit!
Thank you for your continued thoughts and prayers!
If this is your first time reading our blog, here are a few things you may need to know...
This blog page is dedicated to informing our loved ones about our little Nicolas. It all began February 19th 2008. He was born a mere 6 lbs. 2 oz. and within 3 days dropped to 5 lbs. 8 oz. Initially Nicolas was diagnosed with Failure to Thrive and Reflux along with aspirating. He had a surgery at 7 weeks old to correct the reflux. They added a feeding tube at that time to prevent aspirating and improve weight gain as well. Once we checked out of Parkview North we began to see many specialists at Riley Children's Hospital in Indianapolis. After a few trips to Riley and several EEG's later he was diagnosed with Infantile Spasms...something he had been going through since 3 weeks old but was not diagnosed with until he was 6 months old. To try to rid Nicolas of these seizures, Jake and I gave him an inner muscular shot of a hormone steroid called ACTH. This medication dramatically improved his spasms to less than 1 a day. Before that, he would have 8-10 spasms a day. Due to the ACTH medication his immune system was affected and won't be back to normal until June of 2009. As of December 2008, Nicolas' MRI reported that he has a moderate thinning of the white matter that surrounds his brain which attributes to his delays in development. Doctors feel that all of Nicolas' symptoms are due to an underlying cause. Nicolas has gone through a great deal of tests in search of a cause and they have yet to determine what it is. Today Nicolas' weight and height are lining up with growth charts and his seizures are few. Through all of this, you wouldn't think anything has changed for our family. Not that this doesn't weigh heavy on us...it is challenging being patient with medical professionals and with a diagnosis. But through it all...we are so glad God gave him to us! We think he is incredible and love him dearly! With that I leave you this...read our blog so that you too can know more about Nicolas and our journey with him. Continue to pray for our family! Love, The Steins