A day at Newport with Mommy and Grandma Cindy 
Tristan and his wheels!
Finally an update.
Tristan had 2 more seizures last Thursday morning. We woke up, and he went right into a seizure. It was between a petit-mal and status epilepticus seizure. Meaning it was longer than a few minutes but didnt last a full 30. His seizure was 12 minutes in length. He is unresponsive during these and begins to turn a light shade of blue. During this time I was home alone because Chris had already left for work. Sooo I brought Tristan down stairs and layed him on the couch because I needed a phone. Called Chris. Then called the on call neurologist in Cinci, and gave Tristan his diastat. The doc told us to call the squad and call as soon as we get to Dayton Children's ER. SOo thats what we did! Poor Tristan. As he came out of the long seizure, he cried and went back into another one for about 30 seconds.
Got to the hospital, and he was postdictal. Within about an hour he started acting normal again. They did bloodwork, and his depakote level was low. We ironically had an appt with his neuro in Cinci the next day.
I love Dr. Arthur. He talked to us for an hour about everything. We mutually decided to keep Tristans meds the same, just up the doses. Soo thats where we are! So far so good. He also got an EEG, which came back a mess. Tristan is now showing "seizure spikes" in the left and right cerebal cortex. Which is why we are having 2 different types of seizures now, coming from 2 sides of his brain. We get blood work next friday to check his med levels, and we will go from there.
SOo we have since decided that we are getting Tristan a seizure dog from 4paws in Xenia. We are doing this because I am wondering if Tristan is having seizures and we are not knowing about it. The only reason I knew about the one Thursday is because I was in bed with him. If I hadnt' been in bed with him, I dont wanna know what could have happened! This dog with also be trained as a mobility dog. We are SUPER excited. I am just waiting to hear back from 4paws. So fundraisers here we come, this could be up to a $14,000 dog I think. But it is gonna be so worth it, so start saving your pennys!
Since my last post, we have gotten Tristan's newest hip xray results. They didnt come back like I would have liked. His hips are now 40% interfaced ( i think thats the right word). It is his left hip causing this, due to the high tone in his legs. They said the right hip looked good, but want another xray in June. So Dr. Vargus-Adams wants to start him on bacclofen. We havent started it yet, because I am still unsure about this drug. Its just such a heavy drug and it could make him a giant noodle. :o(
Otherwise I think that is really it. He is keeping us super busy. He is still doing therapy 3 times a week at URS, and therapy at school when he is there. He has gained 3 pounds since August. We are now up to btween 27-28pds depending on what scale he is on. Tristan is also 37.5 inches tall now. He is growing up. Tristan will be 4 in May :o(
The craziest thing about Tristan and all his recent seizure activity is that they are occuring on large sporting event days. Everyone knows how much Tristan loves his sports. His last 2 seizures were during Superbowl 2009, and superbowl 2010. Thursday was the start of March Madness. Its crazy, outta 365 days a year, these are the days they are occuring. Is that by chance or related? you tell me!
ALso, if you have a facebook, look me up. I do daily Tristan updates on there. I might end up making him his own facebook page as well.
Well thanks everyone and keep the thoughts and prayers coming his way.
Tristan had 2 more seizures last Thursday morning. We woke up, and he went right into a seizure. It was between a petit-mal and status epilepticus seizure. Meaning it was longer than a few minutes but didnt last a full 30. His seizure was 12 minutes in length. He is unresponsive during these and begins to turn a light shade of blue. During this time I was home alone because Chris had already left for work. Sooo I brought Tristan down stairs and layed him on the couch because I needed a phone. Called Chris. Then called the on call neurologist in Cinci, and gave Tristan his diastat. The doc told us to call the squad and call as soon as we get to Dayton Children's ER. SOo thats what we did! Poor Tristan. As he came out of the long seizure, he cried and went back into another one for about 30 seconds.
Got to the hospital, and he was postdictal. Within about an hour he started acting normal again. They did bloodwork, and his depakote level was low. We ironically had an appt with his neuro in Cinci the next day.
I love Dr. Arthur. He talked to us for an hour about everything. We mutually decided to keep Tristans meds the same, just up the doses. Soo thats where we are! So far so good. He also got an EEG, which came back a mess. Tristan is now showing "seizure spikes" in the left and right cerebal cortex. Which is why we are having 2 different types of seizures now, coming from 2 sides of his brain. We get blood work next friday to check his med levels, and we will go from there.
SOo we have since decided that we are getting Tristan a seizure dog from 4paws in Xenia. We are doing this because I am wondering if Tristan is having seizures and we are not knowing about it. The only reason I knew about the one Thursday is because I was in bed with him. If I hadnt' been in bed with him, I dont wanna know what could have happened! This dog with also be trained as a mobility dog. We are SUPER excited. I am just waiting to hear back from 4paws. So fundraisers here we come, this could be up to a $14,000 dog I think. But it is gonna be so worth it, so start saving your pennys!
Since my last post, we have gotten Tristan's newest hip xray results. They didnt come back like I would have liked. His hips are now 40% interfaced ( i think thats the right word). It is his left hip causing this, due to the high tone in his legs. They said the right hip looked good, but want another xray in June. So Dr. Vargus-Adams wants to start him on bacclofen. We havent started it yet, because I am still unsure about this drug. Its just such a heavy drug and it could make him a giant noodle. :o(
Otherwise I think that is really it. He is keeping us super busy. He is still doing therapy 3 times a week at URS, and therapy at school when he is there. He has gained 3 pounds since August. We are now up to btween 27-28pds depending on what scale he is on. Tristan is also 37.5 inches tall now. He is growing up. Tristan will be 4 in May :o(
The craziest thing about Tristan and all his recent seizure activity is that they are occuring on large sporting event days. Everyone knows how much Tristan loves his sports. His last 2 seizures were during Superbowl 2009, and superbowl 2010. Thursday was the start of March Madness. Its crazy, outta 365 days a year, these are the days they are occuring. Is that by chance or related? you tell me!
ALso, if you have a facebook, look me up. I do daily Tristan updates on there. I might end up making him his own facebook page as well.
Well thanks everyone and keep the thoughts and prayers coming his way.
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