Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Welcome to the list Mickey! Wonderful helpful people with a great deal of knowledge here. I don't know about Tegratol but, I do have a great deal of experience with Dialantin. Ask if a trough level, (done by taking blood possibly by pricking the finger) can me done. By doing this you'll be able to find a base line where you'll know when the trough level reaches a certain number say (an 11) you'll know to start watching that Heaven could possibly be getting near the point where she could have a seizure. Have the Dr. to write you an open ended form where you can get this level check at least once every two months. Chart it on your calendar & keep a copy on a written list in your wallet so you can give this to the Dr. at the hospital if & when she has one so they can see the correlation. It will be VERY helpful in her treatment. ;-) If you have any questions, feel free to contact me off list anytime. I'll do/share anything I can to help you buddy! Your friend, K. Strawberry Plains, TN. Cody Colton Age 6 75 lbs. 4 " 1inches tall 2 WW shoe Perventricular Bilaterial Nodular Heterophia & Polymicrogyria Medication Dialantin 200 mg's per day Seizures that shut down his respiratory system when his trough level gets to 16 or below. Running a temperature effects his trough level lowering it by two points. Favorite things: Spending the night with the grandparents, watching videos & being outside & giving all of daddy's kisses to his momma. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Welcome to the list Mickey! Wonderful helpful people with a great deal of knowledge here. I don't know about Tegratol but, I do have a great deal of experience with Dialantin. Ask if a trough level, (done by taking blood possibly by pricking the finger) can me done. By doing this you'll be able to find a base line where you'll know when the trough level reaches a certain number say (an 11) you'll know to start watching that Heaven could possibly be getting near the point where she could have a seizure. Have the Dr. to write you an open ended form where you can get this level check at least once every two months. Chart it on your calendar & keep a copy on a written list in your wallet so you can give this to the Dr. at the hospital if & when she has one so they can see the correlation. It will be VERY helpful in her treatment. ;-) If you have any questions, feel free to contact me off list anytime. I'll do/share anything I can to help you buddy! Your friend, K. Strawberry Plains, TN. Cody Colton Age 6 75 lbs. 4 " 1inches tall 2 WW shoe Perventricular Bilaterial Nodular Heterophia & Polymicrogyria Medication Dialantin 200 mg's per day Seizures that shut down his respiratory system when his trough level gets to 16 or below. Running a temperature effects his trough level lowering it by two points. Favorite things: Spending the night with the grandparents, watching videos & being outside & giving all of daddy's kisses to his momma. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 In a message dated 7/26/02 7:28:38 PM Central Daylight Time, mickeycorea@... writes: > on this subject and how do deal with it. > > Also you might ask about Diastat, which can be given after a seizure has been on going or she should start to have a hard time breathing. Best, K. <A HREF= " http://banjosetupspecialist.homestead.com/index.html " >BanjoSetupSpecialist\ </A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 In a message dated 7/26/02 7:28:38 PM Central Daylight Time, mickeycorea@... writes: > on this subject and how do deal with it. > > Also you might ask about Diastat, which can be given after a seizure has been on going or she should start to have a hard time breathing. Best, K. <A HREF= " http://banjosetupspecialist.homestead.com/index.html " >BanjoSetupSpecialist\ </A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 Hi Mickey, My son Teddy uses Tegretal and it's made a world of difference. He was having absence seizures and I honestly didn't see them. The school pushed so we did a trial on Tegretal. His cognitive skills went up 100%. It was an amazing change...so I guess the school was right about the seizure activity he was having. I hate the monthly blood tests and I find that we kept having to decide whether to give him more and have him in the " therapeutic dosage level " or to keep him at a level that was low. The higher dosage made him to droozy so we decided to give him less (at the neurologists suggestion) because he couldn't learn if he was sleeping all day...so some medicine was better than no medicine. We also changed it from twice/day to 3 times/day so he doesn't get as much at one time. Good luck with the change, I hope it helps your daughter and welcome to the group. , mother of Ben (13), (12), Hunter (4), and Teddy (4 w/PMG) --- Corea wrote: > > Hello ALL, > > My name is Mickey, I am a 23 yr old father of a beautiful > 4 yr old daughter,Heaven-Leigh. On memorial day She had > a grand mall siezure that lasted over 25 minutes, while > in the care of my brother-in-law. She was taken to > Childrens Hospital of Pennsylvania and had a EEG, & MRI. > > > My wife and I were recently given the results. We were > told she had PMG, and a consultation about what PMG is > and what the first steps of treatment should be. > > 'When Heaven was released from C.H.O.P she was prescribed > Dilantin. So we were told that the 'first step of > treatment was to ween her off the dilantin on to a med > called tetredol( I believe thats it) > > that is where we are right now. I am still trying to > research this and would appreciate any and all info or > emails on this subject and how do deal with it. > > > Sincearly, > > > Micky, Liz, & Heaven-Leigh Corea > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 Hi Mickey, My son Teddy uses Tegretal and it's made a world of difference. He was having absence seizures and I honestly didn't see them. The school pushed so we did a trial on Tegretal. His cognitive skills went up 100%. It was an amazing change...so I guess the school was right about the seizure activity he was having. I hate the monthly blood tests and I find that we kept having to decide whether to give him more and have him in the " therapeutic dosage level " or to keep him at a level that was low. The higher dosage made him to droozy so we decided to give him less (at the neurologists suggestion) because he couldn't learn if he was sleeping all day...so some medicine was better than no medicine. We also changed it from twice/day to 3 times/day so he doesn't get as much at one time. Good luck with the change, I hope it helps your daughter and welcome to the group. , mother of Ben (13), (12), Hunter (4), and Teddy (4 w/PMG) --- Corea wrote: > > Hello ALL, > > My name is Mickey, I am a 23 yr old father of a beautiful > 4 yr old daughter,Heaven-Leigh. On memorial day She had > a grand mall siezure that lasted over 25 minutes, while > in the care of my brother-in-law. She was taken to > Childrens Hospital of Pennsylvania and had a EEG, & MRI. > > > My wife and I were recently given the results. We were > told she had PMG, and a consultation about what PMG is > and what the first steps of treatment should be. > > 'When Heaven was released from C.H.O.P she was prescribed > Dilantin. So we were told that the 'first step of > treatment was to ween her off the dilantin on to a med > called tetredol( I believe thats it) > > that is where we are right now. I am still trying to > research this and would appreciate any and all info or > emails on this subject and how do deal with it. > > > Sincearly, > > > Micky, Liz, & Heaven-Leigh Corea > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 Hi Mickey, My son Teddy uses Tegretal and it's made a world of difference. He was having absence seizures and I honestly didn't see them. The school pushed so we did a trial on Tegretal. His cognitive skills went up 100%. It was an amazing change...so I guess the school was right about the seizure activity he was having. I hate the monthly blood tests and I find that we kept having to decide whether to give him more and have him in the " therapeutic dosage level " or to keep him at a level that was low. The higher dosage made him to droozy so we decided to give him less (at the neurologists suggestion) because he couldn't learn if he was sleeping all day...so some medicine was better than no medicine. We also changed it from twice/day to 3 times/day so he doesn't get as much at one time. Good luck with the change, I hope it helps your daughter and welcome to the group. , mother of Ben (13), (12), Hunter (4), and Teddy (4 w/PMG) --- Corea wrote: > > Hello ALL, > > My name is Mickey, I am a 23 yr old father of a beautiful > 4 yr old daughter,Heaven-Leigh. On memorial day She had > a grand mall siezure that lasted over 25 minutes, while > in the care of my brother-in-law. She was taken to > Childrens Hospital of Pennsylvania and had a EEG, & MRI. > > > My wife and I were recently given the results. We were > told she had PMG, and a consultation about what PMG is > and what the first steps of treatment should be. > > 'When Heaven was released from C.H.O.P she was prescribed > Dilantin. So we were told that the 'first step of > treatment was to ween her off the dilantin on to a med > called tetredol( I believe thats it) > > that is where we are right now. I am still trying to > research this and would appreciate any and all info or > emails on this subject and how do deal with it. > > > Sincearly, > > > Micky, Liz, & Heaven-Leigh Corea > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2002 Report Share Posted July 29, 2002 The EEG can help with diagnosing the type of seizures she's having thereby assisting the neurologist in determining the best drug or drug combination for her. You may have to try several before you find the right one. My son takes Zonegran. It has so far worked great with little side effect. It doesn't make him drowsy as many of them do. in Houston --- Corea wrote: > > Hello ALL, > > My name is Mickey, I am a 23 yr old father of a > beautiful 4 yr old daughter,Heaven-Leigh. On > memorial day She had a grand mall siezure that > lasted over 25 minutes, while in the care of my > brother-in-law. She was taken to Childrens Hospital > of Pennsylvania and had a EEG, & MRI. > > My wife and I were recently given the results. We > were told she had PMG, and a consultation about > what PMG is and what the first steps of treatment > should be. > > 'When Heaven was released from C.H.O.P she was > prescribed Dilantin. So we were told that the 'first > step of treatment was to ween her off the dilantin > on to a med called tetredol( I believe thats it) > > that is where we are right now. I am still trying > to research this and would appreciate any and all > info or emails on this subject and how do deal with > it. > > > Sincearly, > > > Micky, Liz, & Heaven-Leigh Corea > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
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