An Update...

Well as usual we have been very busy and have many updates to share...
Last week Tom was diagnosed with Cyclical Vomiting Syndrome. We spent the better part of a day talking to a few different doctors, psychiatrists and nurses. We were given a lot of great information and have worked out a plan for treatment. Tom is now on Amitriptyline to help reduce his anxiety and excitability- these are the triggers to the sickness. We have had to start him slowly on the medicine and he will be up to his full dose in a few weeks, it will then take about 3 months to see if it is working. He takes the pill at night and it really puts him into a deep sleep, I have noticed since he started that he seems more refreshed and less easily aggravated during the day. Perhaps the sound sleep is part of what he needed also. The doctor also concluded that there is a problem with his mitochondria- basically his body has a problem with the way it uses food and energy. His body uses up everything right away and then after awhile it will crash, as if he is starving- this can be another trigger for the sickness. In the morning Tom has to take 2 tablespoons of uncooked corn starch mixed in pudding, this will slowly and evenly break down throughout the day to keep his energy level up. He will also be drinking energy drinks, sports bars and other foods that provide extra energy. Next time Tom gets sick we will have to bring him up to Children's Hospital to get blood work done while he is actually sick. This will give us a better understanding of exactly what he might need. We also talked to a psychologist. She was very helpful in giving us some ideas as to how things with Tom need to be done a little differently than with other children and how we can do some relaxing exercises that he can use when things become too much for him. She also offered that she would be happy to talk to his teacher/school if they need a better understanding of CVS or Tom's specific behaviors. Now we are just waiting to hear when our appointment will be at the Autism clinic. Please feel free to leave a comment or email me if you have any other questions.

In other news, as many of you know we are still battling with the people that we bought the house from about the work they did in the basement. They got the building permit to get everything fixed months ago and we are still waiting for this all to end. Last Saturday night, something in the basement started fire and we had to call the fire department and evacuate the house and everything...in the rain...with the kids...at midnight!! At the time we had been doing the laundry and they suspected that there was something wrong with the electric running to the washer and dryer. For now we cannot do laundry here- which is a huge drag. And as many of you may understand with the demands of 2 little boys, 1 of which gets sick often, we were a bit behind on the wash as it was- this is not helping!!! Oh well, as we see it, it is more important to take our kids to the park and for walks and spend time with them than make sure every last load of laundry is done everyday. When they are grown they will remember the walks and trips to the park, and as for the couple of laundry baskets in the basement- I'm sure they will forget. Adam has an appointment with an attorney today to discuss the basement and what we should do at this point.

Well that is all for now, hopefully next time I will have some new pictures to go with our updates! It has been so hectic lately that we have not even taken many pictures...sorry!

Dylan's Run/Walk Team

We are trying to get a team together to participate in Dylan's Run for Autism. The date is Sunday September 9th. It is a 2 mile run/walk through the summerfest grounds. After the run/walk is over you can stay for the Indian Summer festival if you want. The fee to enter is $20 per person. You will also be able to collect additional pledges if you would like. We need to have atleast 10 people to have an eligible team. I will need to drop off registration forms by August 17th at the very latest but would like to do it as soon as possible. Please email or call me if you are interested in joining our team. Please check out the link below for more info on the event...

http://dylansrun.com/

What a week...

Well it has proven to be a very busy week in our household. Adam has enjoyed his first week at Wells Fargo! Jack has Lyme Disease. It is not as serious as it sounds, he will be on antibiotics for 2 weeks and it should clear up! And the best news of all...Tom does not have Fragile X Syndrome. As I was told the news over the phone I felt tears welling up in my eyes. I didn't even realize how scared I was about this until I found out that he was in the clear. I was not ready to give up the dreams I have for Tom to grow up and get married, live on his own, have children or do whatever it is that he wants to do. We got the results back for all of the tests and labs that we have been doing the past few weeks and everything was normal other than one of the tests that had high amino levels. He will be retested next week and if it is high again we will go see a geneticist to determine what the exact problem is. What we were told was that this would indicate that the way that Tom uses food and energy could not be working correctly, this could lead to a lot of the physical symptoms that he has been having. Either way it is a much better diagnosis than Fragile X. Adam spoke to the pediatrician yesterday when he was there about Jack and she said that 98% of Tom's problems may all come from the Autism and we may have to in the end learn to cope rather than hope to find some sort of cure. We will see what the blood test this week says. If all is fine with that we will be going to a cyclical vomiting clinic at Children's Hospital where they will focus more on finding a treatment for Tom's bouts of sickness rather than continuing to search for a reason. Apparently children with Autism or chromosomal abnormalities often have physical symptoms that can never be identified with any one condition or disease. In the end the most important thing becomes finding a treatment for the problem rather than the cause. It is hard as a mother to know that you may have to leave questions unanswered and continue to have what your child is going through misunderstood by teachers, friends, family, other parents and even doctors. As I am discovering more about the Autism spectrum and particularily PDD-NOS (pervasive developmental disorder- not otherwise specified) it seems that there may always be more questions than answers and we will just have to learn what we can and do the very best that we can with that knowledge. All in all it has been a great week, Lyme Disease and high amino levels included. We will celebrate with an indoor pizza picnic party tonight(Tom's idea). Goodbye for now. Thank you to everyone that has prayed for us and thought of us- I know that it has made a difference.