Tuesday, September 1, 2009

Trying to find the right balance between medicine and therapy for Matty

As the parent of an autistic child who is is also diagnosed with epilepsy and ADHD we have to find the right balance of medication, healthy diet, positive reinforcement and therapies to help him through his medical conditions. Obviously medicine plays a vital role in Matthew's everyday life. He has several doctors that see him to help him with his conditions and we as parents are always concerned for what he is taking and what other alternatives are there for him.

Matthew has been prescribed depakene for several years now and as he grows the dosage has to be increased to support his increased body weight. Depakene is commonly prescribed to help control seizures as Matty has had several seizures and they have been identified as grand mal seizures where the whole body convulses and when Matty is experiencing it he loses all bodily control. It is quite terrifying to witness and your immediate reaction is to protect him as he is going through it and make sure his head is protected. Most children or adults that experience these types of seizures usually are fine but the injuries they suffer if they are not protected in the event they fall can be severe and sometimes fatal. I remember a girl in my Junior high school class had a seizure in our art class right in front of us as we were assembling for a fire drill and I was so worried for her and we called for our teacher to help her as she fell to the ground. It was so sad and I will never forget it as we found out a week later she had passed away and she was only 16 years old. I cried for her and her family and this has always stayed with me.

It is therefore necessary that Matty takes depakene twice a day, once in the morning before he starts his day and once at night before he goes to sleep. The depakene is necessary to help prevent a seizure as it works to affect chemicals in the brain that might lead to a seizure.

The main concerns we have with depakene is that Matty is regularly checked by his doctor for liver function as some of these medicines tend to affect adversely other bodily functions.
We are relying on the doctors to as we know no other option and we trust that all the medications our son is prescribed will help him and hope in the long term will not have any adverse effects.

Matthew also is prescribed Risperdal(risperidone) which is prescibed for children with irritability associated with autistic disorders. He has had difficulty focussing at times and also with his behavior in the classroom and other social settings and this is why he is prescibed this medicine. It seems to help calm him and as a side effect gives him an increased apetite. We are navigating this all carefully and working together with the doctors to make sure Matty is not having adverse reactions to his prescribed medications. Our main focus is that our son can have a positive reaction to his medications and be able to get along during the school day and function well and focus and interact and participate with little distubance. We are in a situation where we know Matty needs his medication but we don't want him overmedicated to the point where it overly sedates him and takes away from his personality. We always have to be in constant communication with his doctors, the teachers and the school nurse.

The third condition that Matty has been taking medicine for is ADHD which he also has difficulty controlling and the medicine is prescibed to help him get through the school day. He is prescibed Daytrana which is a transdermal patch that is applied to his thigh so the medication can be absorbed into the blood stream. It is also used to calm him but like any medication it has side effects that can affect him in negative ways by making him become aggresive or lose his appetite and have severe mood swings so it is always a necessity that we have his teachers inform us if Matthew is having bad reactions to all these medications he is currently taking. It is a worry and always a main concern that Matty is progressing and that the medicines he takes are doing what they are supposed to and not affecting him in adverse ways. It truly is a balancing act and we are always trusting others but our main concern is our son and we need to assure him that we are doing the right thing for him. We have our concerns naturally but sometimes feel we have no other choice. It truly is a helpless situation we feel sometimes and we are always hoping we are doing the right thing for him.

Raising a child with special needs does have its challenges and moments of uncertainty but we seek medical professionals who guide us and we put our faith, trust and hope in them that Matthew is getting the best possible care he deserves and we are given peace of mind as our son is the love of our life and is truly special to us.

The fact that he is autistic, epileptic and adhd just means he has some challenges but we are there for him and we know he is a special little boy that has the same dreams, desires, interests and affection that any other kid has. In fact I believe he is truly gifted and very special. Thank you Matthew for teaching me so much and sharing with me your dreams, hopes and visions. You are quite a kid! I love you so much!

With pride and joy and all the love in our hearts,

Your Mom & Dad

Edward D. Iannielli III
Maria Jesusa Gonzales Iannielli

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