I did not send Jack to school yesterday. I spoke to his teacher and we decided it was probably better to keep him at home -- which was nice, we had a pajama day!
The neuro called later in the afternoon and confirmed that it was a seizure by my desription. We are to go back to 6 ml 2x a day and hopefully we won't have any more problems.
I am looking at this from the standpoint of I am thankful the medicine has been working for the past 2 years, and that we were obvisously not giving him something he didn't need.
The neuro said we'll discuss weaning in the future and I am totally fine with that! We will go for blood work in two weeks to check the medication levels.
Thursday, September 28, 2006
Wednesday, September 27, 2006
Seizure?
Hello, I am so sorry I haven't been around -- things have been, well, as usual very hectic around here!
We saw Jack's new neuro two weeks ago -- he was AWESOME! Very direct but not condescending, open to questions, and also made some interesting observations and gave me a lot to think about. He ordered an MRI which I have wanted to get for quite some time and we scheduled an appointment to do nothing other than discuss Jack's entire brain!!!
During the appointment we made the decision to start weaning Jack from Tegretol because it's been almost 2 and a half years since his last seizure. I was very confident that this was the right thing to do. We are to wean over many weeks -- he was on 6 ml 2x a day, and we're only down to 5 ml 2x a day this week.
Well this morning Jack was in his booster seat eating breakfast and he had a VERY blank look, looked over to one side and he was moving his mouth like he was chewing and he was drumming his fingers (with his left hand) on his tray. I tapped him on the arm and said his name with no response...I then SHOUTED "JACK!!!!!" and he looked at me and made a sad face like he was going to cry...
I believe it was a Simple Partial Seizure
Which follows his diagnosis...
I called the neuro and spoke to his nurse and she's going to pull Jack's chart and have the neuro call with instructions.
I believe I'll keep him home from school today until we hear from the neurologist.
We saw Jack's new neuro two weeks ago -- he was AWESOME! Very direct but not condescending, open to questions, and also made some interesting observations and gave me a lot to think about. He ordered an MRI which I have wanted to get for quite some time and we scheduled an appointment to do nothing other than discuss Jack's entire brain!!!
During the appointment we made the decision to start weaning Jack from Tegretol because it's been almost 2 and a half years since his last seizure. I was very confident that this was the right thing to do. We are to wean over many weeks -- he was on 6 ml 2x a day, and we're only down to 5 ml 2x a day this week.
Well this morning Jack was in his booster seat eating breakfast and he had a VERY blank look, looked over to one side and he was moving his mouth like he was chewing and he was drumming his fingers (with his left hand) on his tray. I tapped him on the arm and said his name with no response...I then SHOUTED "JACK!!!!!" and he looked at me and made a sad face like he was going to cry...
I believe it was a Simple Partial Seizure
Which follows his diagnosis...
I called the neuro and spoke to his nurse and she's going to pull Jack's chart and have the neuro call with instructions.
I believe I'll keep him home from school today until we hear from the neurologist.
Thursday, September 14, 2006
B is for BUSY!
This has been one of the busiest weeks EVER! The next few are very much the same -- lots of appointments, phone calls, paperwork, etc. We are taking a small vacation this weekend and I can't wait. We NEED A BREAK from all of this!
Jack went back to school and did really well. His eyes look great and are much straighter. Everyone notices how good they look!
I am so proud! Each year Developmental and Disability Services (the program that provides Early Intervention and SN preschool) has a benefit art auction at a nice restaurant in our area. They ask all of the children to submit artwork for the open house and art show this month and out of many entries Jack's was selected to go on to the benefit auction!!!! They only chose 20 pieces for the auction!!
DDS of Lebanon County
I haven't seen this masterpiece yet, and sadly we are out of town the day of the open house so I will have to wait until the benefit auction to see it for myself!!!!
Last year they raised a stunning amount of money -- all which benefits children and adults with disabilities in our county. Imagine, Jack's art will be BOUGHT and displayed by some well-to-do !!! I'm very, very PROUD!
I am soooo FRUSTRATED!!!!! I have had the RX for pediasure and resource 1.5 since JUNE and cannot find a supplier willing to help. Insurance company sent me through their phone system several times to the point where I can now recite it in my sleep...I always get a person that speaks like they're in a tunnel and they give me the same three phone numbers to call...I call the local suppliers and they act like I have three heads or tell me they can supply a different suppliment. NO ONE is willing to order it in for us!!! The pediatrician told me to take it up with Hershey's feeding team, and our dietician recently left, so I am playing phone tag with the new dietician and I am willing to bet she gives me the same three numbers that the insurance company did.
My local pharmacy (Eckerd Drugs) won't supply it -- they recommend we go to one of the local suppliers...takes me back to square one.
I called Walgreens because I purchase the resource 1.5 online and that customer service person couldn't tell me whether or not we could use the mail order system since we have no Walgreen's in our area. I asked what would happen if I send the RX in, and it wasn't able to be supplied...would I get my original RX (the piece of paper) back? She didn't know. I am not willing to part with the RX I worked so hard to get!
I am off to bang my head against a wall. Maybe the resource will automatically appear.
On a happier note, I was able to get Jack to talk for the camera!! Check it out!!
Jack says "Mama, shoes off" (sort of)
Jack says "Elmo"
Jack went back to school and did really well. His eyes look great and are much straighter. Everyone notices how good they look!
I am so proud! Each year Developmental and Disability Services (the program that provides Early Intervention and SN preschool) has a benefit art auction at a nice restaurant in our area. They ask all of the children to submit artwork for the open house and art show this month and out of many entries Jack's was selected to go on to the benefit auction!!!! They only chose 20 pieces for the auction!!
DDS of Lebanon County
I haven't seen this masterpiece yet, and sadly we are out of town the day of the open house so I will have to wait until the benefit auction to see it for myself!!!!
Last year they raised a stunning amount of money -- all which benefits children and adults with disabilities in our county. Imagine, Jack's art will be BOUGHT and displayed by some well-to-do !!! I'm very, very PROUD!
I am soooo FRUSTRATED!!!!! I have had the RX for pediasure and resource 1.5 since JUNE and cannot find a supplier willing to help. Insurance company sent me through their phone system several times to the point where I can now recite it in my sleep...I always get a person that speaks like they're in a tunnel and they give me the same three phone numbers to call...I call the local suppliers and they act like I have three heads or tell me they can supply a different suppliment. NO ONE is willing to order it in for us!!! The pediatrician told me to take it up with Hershey's feeding team, and our dietician recently left, so I am playing phone tag with the new dietician and I am willing to bet she gives me the same three numbers that the insurance company did.
My local pharmacy (Eckerd Drugs) won't supply it -- they recommend we go to one of the local suppliers...takes me back to square one.
I called Walgreens because I purchase the resource 1.5 online and that customer service person couldn't tell me whether or not we could use the mail order system since we have no Walgreen's in our area. I asked what would happen if I send the RX in, and it wasn't able to be supplied...would I get my original RX (the piece of paper) back? She didn't know. I am not willing to part with the RX I worked so hard to get!
I am off to bang my head against a wall. Maybe the resource will automatically appear.
On a happier note, I was able to get Jack to talk for the camera!! Check it out!!
Jack says "Mama, shoes off" (sort of)
Jack says "Elmo"
Sunday, September 10, 2006
Remembering Satoshi Kikuchihara
On September 11, 2006, 2,996 bloggers will unite to pay tribute to the victims of September 11, 2001.
Visit Site
Satoshi Kikuchihara, age 43.
Place killed: World Trade Center. Resident of Scarsdale, N.Y. (USA).
Satoshi was born 1958 at Tokyo Japan. He was the Chief Representative of The Cyuo Mitsui Trust & Banking Co.,Ltd. (WTC2 83F). He lead and managed his staff with warmth and kindness.He was always gentle. He also favored various sports and arts. After 9.11, his family found tickets of NY opera and World-cup event for himself, his wife and daughter. Tickets never to be used.
Satoshi Kikuchihara will be honored by AngelaW on Jack's Blog. This was the 3483th blogger to sign up for the 2,996 Tribute project.
A list of participants and links to their tributes can be found HERE
Friday, September 08, 2006
Campbell's Labels for Education
I am asking everyone I know to save labels for Jack's school!
About Labels for Education™
For more than 30 years, Labels for Education™ has been awarding free educational equipment to schools in exchange for proofs of purchase from the Campbell family of brands. It’s a fun, easy program where students, families and members of the community work together for a common goal.
Click on the link below to see eligible products and instructions on how to save the label!
If you would take the time to save the labels it would really help! If you live far away and would like to mail them to us, please e-mail me at ang_wilhelm@hotmail.com for our mailing address!
Thank you!
ELIGIBLE PRODUCTS
Thursday, September 07, 2006
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