Friday, September 14, 2007

Eye issues

We took Reagan into a neuro-ophthalmologist and she said that Reagan's eyes were healthy, but that she had delayed visual maturation and was extremely farsighted like an infant, although she said that it should improve over time and with seizure control. She gave Reagan some glasses (which she wears infrequently because they don't really seem to help) to try to "jump start" her vision. We later found out that in her records this doctor also diagnosed her with something called CVI (cortical visual impairment), similar to delayed visual maturation, but it basically means that something is being lost in the translation of information between her eyes and brain. She currently receives vision therapy once a week.

Monday, September 10, 2007

More clusters

On Sept 10th Reagan had her 2nd cluster; she had another EEG the following day and the results were the same as before- abnormal with hypsarrythmia. On Sept 16th she had her 3rd cluster and was started on a low dose of Zonegran a few days later. While on the Zonegran, she also went through a trial of vitamin B6, which didn't seem to help. Reagan had a lumbar puncture on October 15th to check for neurotransmitter diseases (all came back negative) and had her 4th cluster the following day. She had another EEG on October 15th, which still showed hypsarrythmia during sleep, but it did show a more normalized pattern while she was awake. At this time Reagan was having anywhere from 10-30 individual startles/spasms a day but they were usually in response to a stimulus (like a loud noise, a burp, or if you got in her face and scared her), we never really thought of them as seizures, but according to her epileptologist, they were. So we started increasing her Zonegran to see if it would get rid of the individual seizures, and although we didn't see any more clusters, it didn't change the amount of individual startles she was having.

In the video the individual spasm is very subtle and occurs about 21sec into the clip.

Tuesday, September 4, 2007

Not Infantile Spasms?

We met with the director of the epilepsy clinic and after listening to us and reviewing all of Reagan's information he said that she did not have infantile spasms/west syndrome. We didn't really understand his reasoning but we were overjoyed nonetheless! He took her off the zonegran, but mentioned that seizures are very common in children and that once you have a seizure it makes you more likely to have another.