About Me


I am a single mom of three amazing boys!  All three of my sons entered my family through adoption.  All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!

Saturday, May 8, 2010

leap of faith

For those of us who have been on this journey for a while, you might remember that David was taking medication for ADHD when he had his first diagnosable, obvious seizures. At the age of 3.5 David had already had 2 years of special education support, and was in an integrated classroom, and was still not learning. He was very impulsive, was not available for teaching and still after years of speech therapy was not making a lot of progress. We were seeing a Psychiatrist, and upon his recommendation we started Focalin. When the Focalin did not work, we tried Daytrana, and when that did not cause much of a change for David we tried Risperdral.

After a few weeks on the Risperdral, the teachers saw no change except he started to lose words- for a boy with very few words to start with, this was of great concern. One day he was with his speech therapist and it became obvious that he only had 5 or 6 words that he could say- the therapist became very concerned that David was having a stroke and so we rushed him to the Emergency Room. At the emergency room it was determined that he had not had a stroke, but we were told that he needed an EEG and an MRI, which luckily had already been scheduled, in order to find out more about what has happening in his brain. We immediately stopped the Risperdral, and within a week David had an MRI which thankfully showed nothing, and an EEG which showed seizures in his occipital lobe. David was started on seizure medication at this time, and it was then that the "real David" came out!

The "real David" was chatty, and more focused, and able to do things we never knew he could do. For a while he actually walked around asking people if they were mad...for so much of his early life he thought everyone was mad at him- he was forever running in the road, lashing out at people, knocking everything over, clearing the dinner talbe with his arms and generally just wreaking havoc. While we knew these things were not being done on purpose, there are only so many times you can tell a child to stop before you become exasperated and exhausted.

So now it is 2 years later and it has again been suggested that David be tried on ADHD medication- while he is succeeding in so many ways, he is still impulsive, and struggles to do most things for more than 5 minutes. No matter how interested he is in an activity, every activity is short lived. In addition, because he never gets deeply involved in an activity, he is strugling with friendships, and is at times challenging to be with.

So today we tried him on the Daytrana patch. All day I watched closely- would there be seizures? Would the medication have an effect on him? Would I notice anything? Would there be a difference? And all day long I talked myself into believing things were different- he was calmer? he did a whole puzzle.....and then I talked myself out of believing things were different....back and forth, I must have changed my mind a hundred times.

And then, we went over to see the Noonans...and this was the test of all tests! My boy passed with flying colors! Just 4 days before we had been at the Noonans with some friends, and while David behaved well, he never really got settled into any activity, and there were many moments of him nudging the other kids and being in their way. While we had a good time, it was obvious that David was struggling a little, and just didnt know how to fit in or how to interact.

Well today, WHAT A DIFFERENCE- for over 45 minutes David set up train tracks, played with the trains, and negotiated sharing the trains with Jacob and other kids as they came in and out. Then, for over 40 minutes David sat at the dining room table with the other children and worked on a workbook- he put stickers in, he shared, he took turns, he wrote and traced letters! He had FUN! He was fun to be with!

But even more amazingly, I took off the Daytrana patch at 6:15, at 7:00 David went berserk- he dumped over toys, he tried to write on the floor with a crayon, he knocked over a lamp - he was bonkers- I finally picked him up and put him on my shoulders and he relaxed a bit, but the difference was incredible and undeniable.

We will try the patch again tomorrow, and this week at school- I am not going to share with his teachers that David is trying a new medication-the only way to get true information is to hear from people who are unaware, otherwise there is an expectation to see a change. But for now, my fingers are crossed, my hopes are high, and as long as there are no more seizures than usual, maybe this is the key to more success for David.

2 comments:

  1. This is GREAT news Amie! And I agree on not telling. It's better to hear how things go from the "unaware"!!!! Let us know how it goes! :)
    Kristi

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  2. Very cool. I am with you on the not telling. Too easy to see a difference when looking for it. As to the "crash"...it might ease up, but if you can get him to eat a protein heavy meal at or around the time of the crash, it might ease things up a little.

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