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!

Sunday, February 7, 2010

A mothers gut

D is currently taking Topomax and Depakote for his seizures. I can't explain it, but in my mind Topomax is really his miracle drug. From the day we got his epilepsy diagnosis he has taken Topomax and while it hasnt cured him of seizures, it is the medication that gave me my little boy- it is the medicine that put the twinkle in his eye. It was the medicine that made it so he could speak again. It was our magic pill.

D has now taken 5 medicines for his seizures, but the one that has been constant has been his Topomax. To me it is the one that he needs, and it is the medication that should not be altered.

Well, a few weeks ago we saw the neurologist because D was losing the ability to use his left hand a few times a week. This was one of the symptoms that we noticed and that led us to do the testing that ended in the epilepsy diagnosis, so it wasnt really frightening, but it was concerning to see him unable to use his hand and the doctor recommended that we increase his depakote level. As we were going through his medications, the doctor recommended that we decrease his Topomax level.

I fought as hard as I could...it just didnt seem like a good idea, but in the end, I had to follow the doctor's orders- if for no other reason than he writes the prescription.....

Well Friday night, it all came back again....D was a monster out to dinner with my parents, he was non stop movement, scattered conversation, slow to respond, and then smacking his lips--- a movement that we only see when he is having seizures- a movement that to me is like being kicked in the stomach.

All weekend I have lived again with that "old" d. the one that can't stop himself, the one who's brain moves too fast for his body- the one who can't answer questions, who wants to do good things, but often is doing the wrong thing...the one who I hate to see. I try to be as patient as possible, but I am telling you, the Tazmanian Devil has nothing on the seizure version of D! He can destroy a room in a matter of seconds.

Why don't doctors listen to parents? I know my son more than any doctor ever will....I want him on as little medication as possible, but I also want him healthy, I want him feeling good, thinking clearly and not tortured by his brain!

I want my 6 year old seizure free- is that too much to ask for?

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