It's hard to believe, but we haven't seen a seizure for 100 days!
And, John starts kindergarten on Tuesday. He'll be in class from 8:30 - 2pm, then will ride the bus home. That is going to be a real change around our house. Hopefully he will enjoy it.
We just got back from a week-long trip to Canada. John did surprising well on the 11 hour car trips. He had a meltdown or two on the trip but was mostly very good. He got lots of chances to play in the water, and throw rocks in the water (his favorite thing).
John has completely stopped biting, and has mostly stopped pinching. When he gets upset, he sometimes goes to his room and lies down. He's even fallen asleep a couple of times. I'm glad that stage is over.
John continues to see a speech therapist a couple of times a week. He is doing pretty well with the PECS. He still isn't learning any vocabulary, though.
Friday, August 31, 2007
Monday, August 06, 2007
75 days
The big news is that John has now gone 75 days without a noticeable seizure. Woohoo!
Because of his success, we haven't changed anything with his medication or diet.
We haven't seen any real improvements in his development, which is a little disheartening. But, we have started some new learning techniques, including PECS (picture exchange system) which he seems to do pretty well with. We have pictures of some of his favorite things sticking to our refrigerator. When he wants something that is pictured, he takes the picture and gives it to us. We usually have him point to the picture, and say the word if he can.
As always, John loves the outdoors and spends a lot of time in our backyard. Here he is muddy from head to toe.
The bad news is that John's temper has gotten completely out of hand. He's happy most of the time, but when something upsets him he just spirals out of control and can't regain his composure for a long time - up to 30 minutes. He bites, hits, and throws things. If he can't find someone to bite, he'll actually bite himself. He's strong, so even I have a hard time trying to contain him when he gets in one of these tantrums. He bit our therapist pretty badly. He's bitten and hit Maya very hard. Of course, Yoshie gets the brunt of the abuse. Check out this bite to her arm:
John finished up his preschool last week. He'll start kindergarten next month. He currently gets in-home speech therapy twice a week.
Like I said, John loves to be outside. He had a great time playing at the beach last weekend:
When it was time to go, he threw his biggest tantrum yet. It was a real challenge to try to carry him off the beach. We had many astonished onlookers. After 30 minutes of this, he finally calmed down and we were able to do some shopping. But, it wore us out completely and we headed home early.
We visited the neurologist 2 weeks ago, and John was pretty bad in his office. So, he suggested that we trial B6 to see if it would help with the tantrums. John has been on 50mg of B6 for years, so we increased that to 100mg. It hasn't helped yet. We actually forgot the B6 one day and John seemed to have his best day, so we're considering trialing a week without any B6. It's probably just coincidence, but who knows? Our neurologist has said that the tantrums might actually be worse than the seizures for some people, so we might consider decreasing his meds and accepting a few seizures. We're definitely not ready to go there at this point. I'll take temper tantrums over seizures any day.
Because of his success, we haven't changed anything with his medication or diet.
We haven't seen any real improvements in his development, which is a little disheartening. But, we have started some new learning techniques, including PECS (picture exchange system) which he seems to do pretty well with. We have pictures of some of his favorite things sticking to our refrigerator. When he wants something that is pictured, he takes the picture and gives it to us. We usually have him point to the picture, and say the word if he can.
As always, John loves the outdoors and spends a lot of time in our backyard. Here he is muddy from head to toe.
The bad news is that John's temper has gotten completely out of hand. He's happy most of the time, but when something upsets him he just spirals out of control and can't regain his composure for a long time - up to 30 minutes. He bites, hits, and throws things. If he can't find someone to bite, he'll actually bite himself. He's strong, so even I have a hard time trying to contain him when he gets in one of these tantrums. He bit our therapist pretty badly. He's bitten and hit Maya very hard. Of course, Yoshie gets the brunt of the abuse. Check out this bite to her arm:
John finished up his preschool last week. He'll start kindergarten next month. He currently gets in-home speech therapy twice a week.
Like I said, John loves to be outside. He had a great time playing at the beach last weekend:
When it was time to go, he threw his biggest tantrum yet. It was a real challenge to try to carry him off the beach. We had many astonished onlookers. After 30 minutes of this, he finally calmed down and we were able to do some shopping. But, it wore us out completely and we headed home early.
We visited the neurologist 2 weeks ago, and John was pretty bad in his office. So, he suggested that we trial B6 to see if it would help with the tantrums. John has been on 50mg of B6 for years, so we increased that to 100mg. It hasn't helped yet. We actually forgot the B6 one day and John seemed to have his best day, so we're considering trialing a week without any B6. It's probably just coincidence, but who knows? Our neurologist has said that the tantrums might actually be worse than the seizures for some people, so we might consider decreasing his meds and accepting a few seizures. We're definitely not ready to go there at this point. I'll take temper tantrums over seizures any day.
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