Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Hello Everyone: My name is Bonnie. I am grandmother to Lindsey who just turned 6 years old. My self and the other Grandmother take care of Lindsey 2 days/week so her mother can go to work to get the medical insurance since her husbad has his own business. Lindsey has PMG. Lindsey cannot talk, walk,crawl or even hold her bottle. Her brain malformation takes the form of cerebral palsy. Her main source of nutrition is Pedisure in a bottle. She can't seem to concentrate so as others can feed her in a setting outside the home. Today she started a special -ed kindergarten program which has 7 students, one teacher and three aids. My daughter, in her heart didn't want her to go to school because she didn't see how Lindsey could benefit from it. She is cognitavely impared as well. Because she was pressured by the school system telling her it was a legal thing Lindsey did attend. Lindsey had to be awakened at 6:30 A.M. (usually sleeps till 9a.m.), quick given a bottle and rushed off to her first day of school. She can't eat till my daughter picks her up at 10:45a.m. This sort of leaves Lindsey lethargaic and very sleepy. We do realize like any other child she needs to get into a routine of going to bed earlier so she will be able to wake up on her own and feel better. When my daughter picked Lindsey up from school today her bib and diaper were both soaked leaving her with a poor impression of the first day of school. She decided to wait till after tomorrow to see what happens before addressing her concerns. I just hope they don't put Lindsey in her chair and just forget about her since all the other children can walk etc. After school which Lindsey seemed to love, they went home. My daughter fed Lindsey and they both fell asleep in the chair. After about 1 hour of sound sleeping, Lindsey woke up, eyes looking big and startled she started to seiz. Her lips turned blue as well. My daughter from working at the hospital immediately turned her on her side with chin up to keep the airway open. She then called me to come over to her house. The seizure only lasted about 1 minute. Lindsey slept extremely sound for about 3 hours. She normally hears a pin drop which wakes her up. When she woke up she was her old self laughing and watching her Grinch DVD. called the pedetriation to report the seziure and he told her that as long as she was able to arouse her (which she did) things would be O.K. The doctor said to keep her home tomorrow so she could keep an eye on her. The school certainly won't like that! was though scared to death. She handled it well but after everything was over I thought she was going to pass out. She is usually very strong but she broke down in tears. My heart broke. She will make an appointment to for Lindsey to see her neurologist at Chicago Children's Memorial. She hahsn't seem him in several years. Does anyone have any ideas of what they will do when she sees the neurologist? Sleep study, MRI, EEG? At some point and I remember someone saying that seizures can be triggered by sleep deprivation. Due to the fact that she was awakened so ealry and only given 1 bottle vs a bottle and cereal then sent off to school I can't but wonder if the lack of sleep might have triggered this seizure today. I don't post much but I surley would appreciate any input on the subject of first time sezuries. Didn't mean for this to be so long but I wan'ted to explain it thoroughly to you so you could understand where we are coming from. Thank you all in advance. Blessing, Bonnie (grandmother to Lindsey 6 years old with severe PMG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2008 Report Share Posted August 15, 2008 Hi Bonnie, We went through the very same thing with (11). I was very apprehensive on school for because he is non-verbal, non-ambulatory as well. Since then..........school has become his joy. We had to start slow. to this day........needs his sleep. He had sleep-deprived seizures for years until we started him on seizure meds at the age of 4. Make sure Lindsey has Diastat (rectal Valium) on hand. Sleep deprivation is still an issue at times but it is something we are all very aware of. We build up slowly on any new routine for . He does start school 1/2 hour late and leave 1/2 hour early. The school accepted this shortened day through an additional IEP that we requested. Our Pediatrician was prepared to write a letter of medical necessity ....but the school accepted our word. It is unbelievably hard to see your child have a seizure. did have a sleep study EEG at the beginning of seizure activity and just recently had another. Because he wouldn't fall asleep....the results only showed that is at risk for seizures. When we could no longer control the sleep deprived 'break through' seizures........we started him on seizure meds. Sharon Bonita Zagrovich wrote: Hello Everyone: My name is Bonnie. I am grandmother to Lindsey who just turned 6 years old. My self and the other Grandmother take care of Lindsey 2 days/week so her mother can go to work to get the medical insurance since her husbad has his own business. Lindsey has PMG. Lindsey cannot talk, walk,crawl or even hold her bottle. Her brain malformation takes the form of cerebral palsy. Her main source of nutrition is Pedisure in a bottle. She can't seem to concentrate so as others can feed her in a setting outside the home. Today she started a special -ed kindergarten program which has 7 students, one teacher and three aids. My daughter, in her heart didn't want her to go to school because she didn't see how Lindsey could benefit from it. She is cognitavely impared as well. Because she was pressured by the school system telling her it was a legal thing Lindsey did attend. Lindsey had to be awakened at 6:30 A.M. (usually sleeps till 9a.m.), quick given a bottle and rushed off to her first day of school. She can't eat till my daughter picks her up at 10:45a.m. This sort of leaves Lindsey lethargaic and very sleepy. We do realize like any other child she needs to get into a routine of going to bed earlier so she will be able to wake up on her own and feel better. When my daughter picked Lindsey up from school today her bib and diaper were both soaked leaving her with a poor impression of the first day of school. She decided to wait till after tomorrow to see what happens before addressing her concerns. I just hope they don't put Lindsey in her chair and just forget about her since all the other children can walk etc. After school which Lindsey seemed to love, they went home. My daughter fed Lindsey and they both fell asleep in the chair. After about 1 hour of sound sleeping, Lindsey woke up, eyes looking big and startled she started to seiz. Her lips turned blue as well. My daughter from working at the hospital immediately turned her on her side with chin up to keep the airway open. She then called me to come over to her house. The seizure only lasted about 1 minute. Lindsey slept extremely sound for about 3 hours. She normally hears a pin drop which wakes her up. When she woke up she was her old self laughing and watching her Grinch DVD. called the pedetriation to report the seziure and he told her that as long as she was able to arouse her (which she did) things would be O.K. The doctor said to keep her home tomorrow so she could keep an eye on her. The school certainly won't like that! was though scared to death. She handled it well but after everything was over I thought she was going to pass out. She is usually very strong but she broke down in tears. My heart broke. She will make an appointment to for Lindsey to see her neurologist at Chicago Children's Memorial. She hahsn't seem him in several years. Does anyone have any ideas of what they will do when she sees the neurologist? Sleep study, MRI, EEG? At some point and I remember someone saying that seizures can be triggered by sleep deprivation. Due to the fact that she was awakened so ealry and only given 1 bottle vs a bottle and cereal then sent off to school I can't but wonder if the lack of sleep might have triggered this seizure today. I don't post much but I surley would appreciate any input on the subject of first time sezuries. Didn't mean for this to be so long but I wan'ted to explain it thoroughly to you so you could understand where we are coming from. Thank you all in advance. Blessing, Bonnie (grandmother to Lindsey 6 years old with severe PMG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2008 Report Share Posted August 15, 2008 Hi Bonnie, Lindsey should probably be seeing her neurologist on a regular basis, and when she had the seizure... Your daughter should also call your neurologist if this happens again, the pediatrician isnt the best avenue usually. What they will do for her, is probably an EEG... maybe an MRI to see if anything has changed... and most importantly develop a seizure control plan for her.. which includes having rescue seizure drugs like rectal diastat on hand. sounds extremely similar to Lindsey.. he started seizing around age 4. He goes to a special education program... with 7 other disabled children... they have their own therapists and aides and nurses there. And although he is very cognitively impaired, and can not speak... he absolutely loves school. I refuse to mainstream him (put him into the normal classes) because I know he is much safer and educationally cared for in a smaller setting with more attention. Your daughter needs to continually express her concerns...and be as involved as possible to make sure the school understands your daughters issues. All of 's worst seizures have occured during sleep, or when he is exhausted....but the biggest fact you have to remember now is that she does have a predisposition for seizures and probably/possibly needs medication to make sure she doesnt have more. The neurologist should be able to help... if you are in Chicago..I would get her to Dr. Dobyns for consult. I am amazed and impressed that you, and your daughters mother in law are helping her so much with Lindsey!!! My parents, and my inlaws will not even watch for me...ever..they are to " nervous " etc and have never stepped up to the plate to help with him. They will help with my other children... If they just realized, that he is such a love....such a sweet kid...and so much fun. Good luck... You are very special. Hasselberger, Mom to ...bi lateral diffuse PMG 80% Bonita Zagrovich wrote: Hello Everyone: My name is Bonnie. I am grandmother to Lindsey who just turned 6 years old. My self and the other Grandmother take care of Lindsey 2 days/week so her mother can go to work to get the medical insurance since her husbad has his own business. Lindsey has PMG. Lindsey cannot talk, walk,crawl or even hold her bottle. Her brain malformation takes the form of cerebral palsy. Her main source of nutrition is Pedisure in a bottle. She can't seem to concentrate so as others can feed her in a setting outside the home. Today she started a special -ed kindergarten program which has 7 students, one teacher and three aids. My daughter, in her heart didn't want her to go to school because she didn't see how Lindsey could benefit from it. She is cognitavely impared as well. Because she was pressured by the school system telling her it was a legal thing Lindsey did attend. Lindsey had to be awakened at 6:30 A.M. (usually sleeps till 9a.m.), quick given a bottle and rushed off to her first day of school. She can't eat till my daughter picks her up at 10:45a.m. This sort of leaves Lindsey lethargaic and very sleepy. We do realize like any other child she needs to get into a routine of going to bed earlier so she will be able to wake up on her own and feel better. When my daughter picked Lindsey up from school today her bib and diaper were both soaked leaving her with a poor impression of the first day of school. She decided to wait till after tomorrow to see what happens before addressing her concerns. I just hope they don't put Lindsey in her chair and just forget about her since all the other children can walk etc. After school which Lindsey seemed to love, they went home. My daughter fed Lindsey and they both fell asleep in the chair. After about 1 hour of sound sleeping, Lindsey woke up, eyes looking big and startled she started to seiz. Her lips turned blue as well. My daughter from working at the hospital immediately turned her on her side with chin up to keep the airway open. She then called me to come over to her house. The seizure only lasted about 1 minute. Lindsey slept extremely sound for about 3 hours. She normally hears a pin drop which wakes her up. When she woke up she was her old self laughing and watching her Grinch DVD. called the pedetriation to report the seziure and he told her that as long as she was able to arouse her (which she did) things would be O.K. The doctor said to keep her home tomorrow so she could keep an eye on her. The school certainly won't like that! was though scared to death. She handled it well but after everything was over I thought she was going to pass out. She is usually very strong but she broke down in tears. My heart broke. She will make an appointment to for Lindsey to see her neurologist at Chicago Children's Memorial. She hahsn't seem him in several years. Does anyone have any ideas of what they will do when she sees the neurologist? Sleep study, MRI, EEG? At some point and I remember someone saying that seizures can be triggered by sleep deprivation. Due to the fact that she was awakened so ealry and only given 1 bottle vs a bottle and cereal then sent off to school I can't but wonder if the lack of sleep might have triggered this seizure today. I don't post much but I surley would appreciate any input on the subject of first time sezuries. Didn't mean for this to be so long but I wan'ted to explain it thoroughly to you so you could understand where we are coming from. Thank you all in advance. Blessing, Bonnie (grandmother to Lindsey 6 years old with severe PMG To be come fully alive a person must have goals and aims that transcend himself - Herbert A. Otto Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2008 Report Share Posted August 15, 2008 I have heard that seizures are very much related to sleep. My son Evan also has had his seizures upon waking from a nap or for the first time of the day. So I think sleep deprivation could have triggered her seizure. Mom 2 Evan Left Spastic Hemiplegia 3 1/2yrs old, 7yrs nda and SM to 16yrs www.justinichfamily.blogspot.com Subject: FIRST SIEZURE To: polymicrogyria Date: Thursday, August 14, 2008, 10:40 PM Hello Everyone: My name is Bonnie. I am grandmother to Lindsey who just turned 6 years old. My self and the other Grandmother take care of Lindsey 2 days/week so her mother can go to work to get the medical insurance since her husbad has his own business. Lindsey has PMG. Lindsey cannot talk, walk,crawl or even hold her bottle. Her brain malformation takes the form of cerebral palsy. Her main source of nutrition is Pedisure in a bottle. She can't seem to concentrate so as others can feed her in a setting outside the home. Today she started a special -ed kindergarten program which has 7 students, one teacher and three aids. My daughter, in her heart didn't want her to go to school because she didn't see how Lindsey could benefit from it. She is cognitavely impared as well. Because she was pressured by the school system telling her it was a legal thing Lindsey did attend. Lindsey had to be awakened at 6:30 A.M. (usually sleeps till 9a.m.), quick given a bottle and rushed off to her first day of school. She can't eat till my daughter picks her up at 10:45a.m. This sort of leaves Lindsey lethargaic and very sleepy. We do realize like any other child she needs to get into a routine of going to bed earlier so she will be able to wake up on her own and feel better. When my daughter picked Lindsey up from school today her bib and diaper were both soaked leaving her with a poor impression of the first day of school. She decided to wait till after tomorrow to see what happens before addressing her concerns. I just hope they don't put Lindsey in her chair and just forget about her since all the other children can walk etc. After school which Lindsey seemed to love, they went home. My daughter fed Lindsey and they both fell asleep in the chair. After about 1 hour of sound sleeping, Lindsey woke up, eyes looking big and startled she started to seiz. Her lips turned blue as well. My daughter from working at the hospital immediately turned her on her side with chin up to keep the airway open. She then called me to come over to her house. The seizure only lasted about 1 minute. Lindsey slept extremely sound for about 3 hours. She normally hears a pin drop which wakes her up. When she woke up she was her old self laughing and watching her Grinch DVD. called the pedetriation to report the seziure and he told her that as long as she was able to arouse her (which she did) things would be O.K. The doctor said to keep her home tomorrow so she could keep an eye on her. The school certainly won't like that! was though scared to death. She handled it well but after everything was over I thought she was going to pass out. She is usually very strong but she broke down in tears. My heart broke. She will make an appointment to for Lindsey to see her neurologist at Chicago Children's Memorial. She hahsn't seem him in several years. Does anyone have any ideas of what they will do when she sees the neurologist? Sleep study, MRI, EEG? At some point and I remember someone saying that seizures can be triggered by sleep deprivation. Due to the fact that she was awakened so ealry and only given 1 bottle vs a bottle and cereal then sent off to school I can't but wonder if the lack of sleep might have triggered this seizure today. I don't post much but I surley would appreciate any input on the subject of first time sezuries. Didn't mean for this to be so long but I wan'ted to explain it thoroughly to you so you could understand where we are coming from. Thank you all in advance. Blessing, Bonnie (grandmother to Lindsey 6 years old with severe PMG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2008 Report Share Posted August 15, 2008 While helping Lindsey get an education is the law... Your daughter does not have to send her to school to do so. Of course the school will not let you in on all the " secrets " because it is easier and cheaper for them to bully uniformed parents into placing their child in the school building. I have been lied too and threatened with loss of services for Carver by the school... But, I got informed and Carver gets all his therapies and teacher in our home... around his schedule. Knowledge is the best weapon when dealing with the school. Please let me know if I can help in any way! and Carver Hickory, NC _____ From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of Bonita Zagrovich Sent: Friday, August 15, 2008 1:40 AM To: polymicrogyria Subject: FIRST SIEZURE Hello Everyone: My name is Bonnie. I am grandmother to Lindsey who just turned 6 years old. My self and the other Grandmother take care of Lindsey 2 days/week so her mother can go to work to get the medical insurance since her husbad has his own business. Lindsey has PMG. Lindsey cannot talk, walk,crawl or even hold her bottle. Her brain malformation takes the form of cerebral palsy. Her main source of nutrition is Pedisure in a bottle. She can't seem to concentrate so as others can feed her in a setting outside the home. Today she started a special -ed kindergarten program which has 7 students, one teacher and three aids. My daughter, in her heart didn't want her to go to school because she didn't see how Lindsey could benefit from it. She is cognitavely impared as well. Because she was pressured by the school system telling her it was a legal thing Lindsey did attend. Lindsey had to be awakened at 6:30 A.M. (usually sleeps till 9a.m.), quick given a bottle and rushed off to her first day of school. She can't eat till my daughter picks her up at 10:45a.m. This sort of leaves Lindsey lethargaic and very sleepy. We do realize like any other child she needs to get into a routine of going to bed earlier so she will be able to wake up on her own and feel better. When my daughter picked Lindsey up from school today her bib and diaper were both soaked leaving her with a poor impression of the first day of school. She decided to wait till after tomorrow to see what happens before addressing her concerns. I just hope they don't put Lindsey in her chair and just forget about her since all the other children can walk etc. After school which Lindsey seemed to love, they went home. My daughter fed Lindsey and they both fell asleep in the chair. After about 1 hour of sound sleeping, Lindsey woke up, eyes looking big and startled she started to seiz. Her lips turned blue as well. My daughter from working at the hospital immediately turned her on her side with chin up to keep the airway open. She then called me to come over to her house. The seizure only lasted about 1 minute. Lindsey slept extremely sound for about 3 hours. She normally hears a pin drop which wakes her up. When she woke up she was her old self laughing and watching her Grinch DVD. called the pedetriation to report the seziure and he told her that as long as she was able to arouse her (which she did) things would be O.K. The doctor said to keep her home tomorrow so she could keep an eye on her. The school certainly won't like that! was though scared to death. She handled it well but after everything was over I thought she was going to pass out. She is usually very strong but she broke down in tears. My heart broke. She will make an appointment to for Lindsey to see her neurologist at Chicago Children's Memorial. She hahsn't seem him in several years. Does anyone have any ideas of what they will do when she sees the neurologist? Sleep study, MRI, EEG? At some point and I remember someone saying that seizures can be triggered by sleep deprivation. Due to the fact that she was awakened so ealry and only given 1 bottle vs a bottle and cereal then sent off to school I can't but wonder if the lack of sleep might have triggered this seizure today. I don't post much but I surley would appreciate any input on the subject of first time sezuries. Didn't mean for this to be so long but I wan'ted to explain it thoroughly to you so you could understand where we are coming from. Thank you all in advance. Blessing, Bonnie (grandmother to Lindsey 6 years old with severe PMG No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.3/1613 - Release Date: 8/15/2008 5:58 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2008 Report Share Posted August 15, 2008 Bonita, You are a remarkable grandparent. Kudos to you! It reminded me of a quote that I heard from Dr. Wayne Dyer one night on TV. I was watching him as he was talking about the force or power that moves the world (you can call it God if you'd like). He was talking about why things happen the way they do. In my mind I thought that I might email Dr. Dyer and ask him his opinion about why children are born with disabilities? They are so innocent. In less than two minutes he started talking about this boy named Shilo who was disabled but wanted to play baseball with a team that was playing in his neighborhood. Shilo's father was torn. He was afraid to ask if his son could play one inning but Shilo wouldn't let him not ask. So, the father asked and the team said yes! At the bottom of the 7th inning (the last inning for that age) it was Shilo's turn to bat. There were already 2 outs and the game was within 1-2 runs so this play was critical. Instead of substituting a real player, the team decided to let Shilo bat. Another boy helped Shilo up to the plate and helped him swing. Shilo swung and hit the ball right to the pitcher. The pitcher then " accidentally " threw the ball out into right field while Shilo ran to first base. The outfielder " accidentally " threw the ball to another outfielder and so on and so forth until Shilo ran all the way home. Shilo was very proud of himself. The quote from Dr. Dyer was that children are born with disabilities to bring out the perfection in others. An example is that story above. I thought that was profound and I found myself amazed that my little girl had such a huge role to play in this world. In her 2.5 years, my husband and I have already witnessed perfection - in her nanny, her grandparents, her therapists and even in ourselves. She's brought out something in us we never knew we had. Anyway, good on you, Bonita, for allowing this challenging situation to bring out your perfection. Rochelle Rochelle A. Quandt Senior Marketing Communications Administrator Medical Division 3M Center, 275-4W-02 St. , MN 55144-1000 Tel: Fax: raquandt@... " Bonita Zagrovich " Sent by: polymicrogyria 08/15/2008 12:40 AM Please respond to polymicrogyria To polymicrogyria cc Subject FIRST SIEZURE Hello Everyone: My name is Bonnie. I am grandmother to Lindsey who just turned 6 years old. My self and the other Grandmother take care of Lindsey 2 days/week so her mother can go to work to get the medical insurance since her husbad has his own business. Lindsey has PMG. Lindsey cannot talk, walk,crawl or even hold her bottle. Her brain malformation takes the form of cerebral palsy. Her main source of nutrition is Pedisure in a bottle. She can't seem to concentrate so as others can feed her in a setting outside the home. Today she started a special -ed kindergarten program which has 7 students, one teacher and three aids. My daughter, in her heart didn't want her to go to school because she didn't see how Lindsey could benefit from it. She is cognitavely impared as well. Because she was pressured by the school system telling her it was a legal thing Lindsey did attend. Lindsey had to be awakened at 6:30 A.M. (usually sleeps till 9a.m.), quick given a bottle and rushed off to her first day of school. She can't eat till my daughter picks her up at 10:45a.m. This sort of leaves Lindsey lethargaic and very sleepy. We do realize like any other child she needs to get into a routine of going to bed earlier so she will be able to wake up on her own and feel better. When my daughter picked Lindsey up from school today her bib and diaper were both soaked leaving her with a poor impression of the first day of school. She decided to wait till after tomorrow to see what happens before addressing her concerns. I just hope they don't put Lindsey in her chair and just forget about her since all the other children can walk etc. After school which Lindsey seemed to love, they went home. My daughter fed Lindsey and they both fell asleep in the chair. After about 1 hour of sound sleeping, Lindsey woke up, eyes looking big and startled she started to seiz. Her lips turned blue as well. My daughter from working at the hospital immediately turned her on her side with chin up to keep the airway open. She then called me to come over to her house. The seizure only lasted about 1 minute. Lindsey slept extremely sound for about 3 hours. She normally hears a pin drop which wakes her up. When she woke up she was her old self laughing and watching her Grinch DVD. called the pedetriation to report the seziure and he told her that as long as she was able to arouse her (which she did) things would be O.K. The doctor said to keep her home tomorrow so she could keep an eye on her. The school certainly won't like that! was though scared to death. She handled it well but after everything was over I thought she was going to pass out. She is usually very strong but she broke down in tears. My heart broke. She will make an appointment to for Lindsey to see her neurologist at Chicago Children's Memorial. She hahsn't seem him in several years. Does anyone have any ideas of what they will do when she sees the neurologist? Sleep study, MRI, EEG? At some point and I remember someone saying that seizures can be triggered by sleep deprivation. Due to the fact that she was awakened so ealry and only given 1 bottle vs a bottle and cereal then sent off to school I can't but wonder if the lack of sleep might have triggered this seizure today. I don't post much but I surley would appreciate any input on the subject of first time sezuries. Didn't mean for this to be so long but I wan'ted to explain it thoroughly to you so you could understand where we are coming from. Thank you all in advance. Blessing, Bonnie (grandmother to Lindsey 6 years old with severe PMG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2008 Report Share Posted August 15, 2008 ABSOLUTELY true... I also refused to let them force into mainstreaming because I knew they could never meet all of his needs. AS a result of standing my guard, the school system agreed to place in a private program called Project Succeed...they have all special needs kids, their own nurse, therapists, etc. gets the best of the best in terms of adaptive equipment, consultations, and clinics brought to the kids. The educational curriculum is developed around their needs...and health comes first 100% of the time. I will never place into a public school setting...because too much in terms of therapy and educational needs gets compromised trying to " fit " them into a world where they do not " fit " . 's school is the most amazing and loving program I could have ever dreamed of. AND all of the parents there had to fight, like I did...to get the schools to send their kids there...but in the end...they all win...because the law is on our side in terms what is the best environment for our kids. You have to become a good fighter... public school isnt going to advocate for you to get the maximum amount of medical and therapeutic intervention...because it is an educational model. For kids like my ... a medical-therapy-education program workds better. Be strong. , Mom to ...age 10 Elmore wrote: While helping Lindsey get an education is the law... Your daughter does not have to send her to school to do so. Of course the school will not let you in on all the " secrets " because it is easier and cheaper for them to bully uniformed parents into placing their child in the school building. I have been lied too and threatened with loss of services for Carver by the school... But, I got informed and Carver gets all his therapies and teacher in our home... around his schedule. Knowledge is the best weapon when dealing with the school. Please let me know if I can help in any way! and Carver Hickory, NC _____ From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of Bonita Zagrovich Sent: Friday, August 15, 2008 1:40 AM To: polymicrogyria Subject: FIRST SIEZURE Hello Everyone: My name is Bonnie. I am grandmother to Lindsey who just turned 6 years old. My self and the other Grandmother take care of Lindsey 2 days/week so her mother can go to work to get the medical insurance since her husbad has his own business. Lindsey has PMG. Lindsey cannot talk, walk,crawl or even hold her bottle. Her brain malformation takes the form of cerebral palsy. Her main source of nutrition is Pedisure in a bottle. She can't seem to concentrate so as others can feed her in a setting outside the home. Today she started a special -ed kindergarten program which has 7 students, one teacher and three aids. My daughter, in her heart didn't want her to go to school because she didn't see how Lindsey could benefit from it. She is cognitavely impared as well. Because she was pressured by the school system telling her it was a legal thing Lindsey did attend. Lindsey had to be awakened at 6:30 A.M. (usually sleeps till 9a.m.), quick given a bottle and rushed off to her first day of school. She can't eat till my daughter picks her up at 10:45a.m. This sort of leaves Lindsey lethargaic and very sleepy. We do realize like any other child she needs to get into a routine of going to bed earlier so she will be able to wake up on her own and feel better. When my daughter picked Lindsey up from school today her bib and diaper were both soaked leaving her with a poor impression of the first day of school. She decided to wait till after tomorrow to see what happens before addressing her concerns. I just hope they don't put Lindsey in her chair and just forget about her since all the other children can walk etc. After school which Lindsey seemed to love, they went home. My daughter fed Lindsey and they both fell asleep in the chair. After about 1 hour of sound sleeping, Lindsey woke up, eyes looking big and startled she started to seiz. Her lips turned blue as well. My daughter from working at the hospital immediately turned her on her side with chin up to keep the airway open. She then called me to come over to her house. The seizure only lasted about 1 minute. Lindsey slept extremely sound for about 3 hours. She normally hears a pin drop which wakes her up. When she woke up she was her old self laughing and watching her Grinch DVD. called the pedetriation to report the seziure and he told her that as long as she was able to arouse her (which she did) things would be O.K. The doctor said to keep her home tomorrow so she could keep an eye on her. The school certainly won't like that! was though scared to death. She handled it well but after everything was over I thought she was going to pass out. She is usually very strong but she broke down in tears. My heart broke. She will make an appointment to for Lindsey to see her neurologist at Chicago Children's Memorial. She hahsn't seem him in several years. Does anyone have any ideas of what they will do when she sees the neurologist? Sleep study, MRI, EEG? At some point and I remember someone saying that seizures can be triggered by sleep deprivation. Due to the fact that she was awakened so ealry and only given 1 bottle vs a bottle and cereal then sent off to school I can't but wonder if the lack of sleep might have triggered this seizure today. I don't post much but I surley would appreciate any input on the subject of first time sezuries. Didn't mean for this to be so long but I wan'ted to explain it thoroughly to you so you could understand where we are coming from. Thank you all in advance. Blessing, Bonnie (grandmother to Lindsey 6 years old with severe PMG No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.3/1613 - Release Date: 8/15/2008 5:58 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2008 Report Share Posted August 15, 2008 and : It makes me feel much better that you, as well as the others in the group, can relate to our situation. Other than this special needs class which is at one of our regular grade schools, there isn't much of an alternative around here. I will say, that we didn't give it much of a chance (two days). Next week the teacher said the therapist would be coming to the school to introduce Lindsey to a communication board. This would be excellent! But now there's this issue of her being off schedule. We now feel the seizure she suffered was due to the fact of her schedule  being disrupted and sleep deprived. Lindsey needs to eat and get her rest to function properly which is true for most of us. The pressure that the school is putting on us to get her to school and on time and every day  is unbelievable. I don't know what we will do next year when it's a full day ordeal. Being that she doesn't eat I guess the school will have to resort to letting my daughter come and feed her or else a feeding tube will have to be the answer. If we had an alternative program we wouldn't give this a second thought. Our state of Indiana is so terrible about providing for children such as Lindsey. At least based on our experience. We're just at loose ends about this whole thing. Do we try to do this school thing a while longer and take the chance of seizures or just forget it. Lindsey will see her perdiatrition next week and we'll go from there.  I'm quite sure she'll tell her to see the neurologist as well. Lindsey's pediatrician will give my daughter a note for absolutely anything she needs including one to keep her home. That's no problem but we just can't decide what's best. My daughter is just so anxiety stricken because of the seizure she saw Lindsey suffer yesterday she now doesn't want to let her out of her site. This isn't good either. By the way...do any of you know if it is " normal " for the lips to turn blue when kids seize? The special needs teacher just doesn't really show many feelings or much compassion which makes us wonder if they have had much experience with kids such as Lindsey.  I guess we will have to get tough and demand what we feel is best. Anyway, thanks everyone for your input and advise and wisdom. I know all of you relate in some manner and this is comforting. Hugs to all of you and your kiddos too! Blessings, Bonnie While helping Lindsey get an education is the law... Your daughter does not have to send her to school to do so. Of course the school will not let you in on all the " secrets " because it is easier and cheaper for them to bully uniformed parents into placing their child in the school building. I have been lied too and threatened with loss of services for Carver by the school... But, I got informed and Carver gets all his therapies and teacher in our home... around his schedule. Knowledge is the best weapon when dealing with the school. Please let me know if I can help in any way! and Carver Hickory, NC _____ From: polymicrogyria@ yahoogroups. com [mailto:polymicrogyria@ yahoogroups. com] On Behalf Of Bonita Zagrovich Sent: Friday, August 15, 2008 1:40 AM To: polymicrogyria@ yahoogroups. com Subject: FIRST SIEZURE Hello Everyone: My name is Bonnie. I am grandmother to Lindsey who just turned 6 years old. My self and the other Grandmother take care of Lindsey 2 days/week so her mother can go to work to get the medical insurance since her husbad has his own business. Lindsey has PMG. Lindsey cannot talk, walk,crawl or even hold her bottle. Her brain malformation takes the form of cerebral palsy. Her main source of nutrition is Pedisure in a bottle. She can't seem to concentrate so as others can feed her in a setting outside the home. Today she started a special -ed kindergarten program which has 7 students, one teacher and three aids. My daughter, in her heart didn't want her to go to school because she didn't see how Lindsey could benefit from it. She is cognitavely impared as well. Because she was pressured by the school system telling her it was a legal thing Lindsey did attend. Lindsey had to be awakened at 6:30 A.M. (usually sleeps till 9a.m.), quick given a bottle and rushed off to her first day of school. She can't eat till my daughter picks her up at 10:45a.m. This sort of leaves Lindsey lethargaic and very sleepy. We do realize like any other child she needs to get into a routine of going to bed earlier so she will be able to wake up on her own and feel better. When my daughter picked Lindsey up from school today her bib and diaper were both soaked leaving her with a poor impression of the first day of school. She decided to wait till after tomorrow to see what happens before addressing her concerns. I just hope they don't put Lindsey in her chair and just forget about her since all the other children can walk etc. After school which Lindsey seemed to love, they went home. My daughter fed Lindsey and they both fell asleep in the chair. After about 1 hour of sound sleeping, Lindsey woke up, eyes looking big and startled she started to seiz. Her lips turned blue as well. My daughter from working at the hospital immediately turned her on her side with chin up to keep the airway open. She then called me to come over to her house. The seizure only lasted about 1 minute. Lindsey slept extremely sound for about 3 hours. She normally hears a pin drop which wakes her up. When she woke up she was her old self laughing and watching her Grinch DVD. called the pedetriation to report the seziure and he told her that as long as she was able to arouse her (which she did) things would be O.K. The doctor said to keep her home tomorrow so she could keep an eye on her. The school certainly won't like that! was though scared to death. She handled it well but after everything was over I thought she was going to pass out. She is usually very strong but she broke down in tears. My heart broke. She will make an appointment to for Lindsey to see her neurologist at Chicago Children's Memorial. She hahsn't seem him in several years. Does anyone have any ideas of what they will do when she sees the neurologist? Sleep study, MRI, EEG? At some point and I remember someone saying that seizures can be triggered by sleep deprivation. Due to the fact that she was awakened so ealry and only given 1 bottle vs a bottle and cereal then sent off to school I can't but wonder if the lack of sleep might have triggered this seizure today. I don't post much but I surley would appreciate any input on the subject of first time sezuries. Didn't mean for this to be so long but I wan'ted to explain it thoroughly to you so you could understand where we are coming from. Thank you all in advance. Blessing, Bonnie (grandmother to Lindsey 6 years old with severe PMG No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.6.3/1613 - Release Date: 8/15/2008 5:58 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2008 Report Share Posted August 15, 2008 Hi Bonnie... Thanks for the kind words. Most of us have seizures as a regular way of life here... especially the older kids..or so it seems.. but yes, the lips can turn blueish.. gets a very very pale palor to his face, with blueish lips..its quite creepy honestly.. But seriously, she should go straight to her neurologist...and get a proactive plan in place for seizure rescue medication (a valium that is inserted rectally called diastat).. and whether she is sleep deprived or not..the fact of the matter is that Lindsey has seizures...is prone to them...and you do not want to ever be put in a position where one happens and you can't stop it. The longer a seizure goes, the harder it is to stop them. And not all seizures stop on their own. Our protocol.... for school, and home... is after two minutes insert rectal diastat and call 911. We do not mess around...we would rather have him rushed to the ER than leave him in harms way. As far as school goes, I would give them some more time... they will be probably be more adaptable to her needs the more they get to know her. And if they dont adapt to her needs, they will have to provide her with home schooling. Whether its Indiana or Alaska...there has to be a recourse. By the way, (age 10) has been seizure free for about 6 months now...but I still have a hard time leaving him out of my site... its been that way for years. He has become my full time career! Whenever he would have even a little seizure at school...I rush over there to make sure he is ok. So I know how your daughter feels. It is VERY hard to give up control into the hands of the school system. This year... has started requiring a nurse be with him on the bus, and all day at school...even though the school has a nurse in his program.. we have insisted that he have his own nurse...and they are paying for it. We laugh and joke... that now has 20 mothers between the nurse, the therapists, and all the aides and helpers at school. I also get 56 hours of in home private duty nursing through 's Connecticut Medicaid title 19... this started this year...and I didnt realize how badly I needed help... until I finally got it. But please encourage her to get to the neurologist asap... I do not hold stock in pediatricians for anything related to ...except for the basics, our pediatrician is the gatekeeper..but our specialists are the most important part of the team Neurologist, Gastroenterologist, Orthopedic, Physiatry, and extremely important pulmonary team. The most important advocate and organizer.. is me...Mom. It is just the way it is. Hang in there. She's going to be just fine... Much love... Hasselberger... " Zagrovich@ yahoo.com " wrote: and : It makes me feel much better that you, as well as the others in the group, can relate to our situation. Other than this special needs class which is at one of our regular grade schools, there isn't much of an alternative around here. I will say, that we didn't give it much of a chance (two days). Next week the teacher said the therapist would be coming to the school to introduce Lindsey to a communication board. This would be excellent! But now there's this issue of her being off schedule. We now feel the seizure she suffered was due to the fact of her schedule being disrupted and sleep deprived. Lindsey needs to eat and get her rest to function properly which is true for most of us. The pressure that the school is putting on us to get her to school and on time and every day is unbelievable. I don't know what we will do next year when it's a full day ordeal. Being that she doesn't eat I guess the school will have to resort to letting my daughter come and feed her or else a feeding tube will have to be the answer. If we had an alternative program we wouldn't give this a second thought. Our state of Indiana is so terrible about providing for children such as Lindsey. At least based on our experience. We're just at loose ends about this whole thing. Do we try to do this school thing a while longer and take the chance of seizures or just forget it. Lindsey will see her perdiatrition next week and we'll go from there. I'm quite sure she'll tell her to see the neurologist as well. Lindsey's pediatrician will give my daughter a note for absolutely anything she needs including one to keep her home. That's no problem but we just can't decide what's best. My daughter is just so anxiety stricken because of the seizure she saw Lindsey suffer yesterday she now doesn't want to let her out of her site. This isn't good either. By the way...do any of you know if it is " normal " for the lips to turn blue when kids seize? The special needs teacher just doesn't really show many feelings or much compassion which makes us wonder if they have had much experience with kids such as Lindsey. I guess we will have to get tough and demand what we feel is best. Anyway, thanks everyone for your input and advise and wisdom. I know all of you relate in some manner and this is comforting. Hugs to all of you and your kiddos too! Blessings, Bonnie While helping Lindsey get an education is the law... Your daughter does not have to send her to school to do so. Of course the school will not let you in on all the " secrets " because it is easier and cheaper for them to bully uniformed parents into placing their child in the school building. I have been lied too and threatened with loss of services for Carver by the school... But, I got informed and Carver gets all his therapies and teacher in our home... around his schedule. Knowledge is the best weapon when dealing with the school. Please let me know if I can help in any way! and Carver Hickory, NC _____ From: polymicrogyria@ yahoogroups. com [mailto:polymicrogyria@ yahoogroups. com] On Behalf Of Bonita Zagrovich Sent: Friday, August 15, 2008 1:40 AM To: polymicrogyria@ yahoogroups. com Subject: FIRST SIEZURE Hello Everyone: My name is Bonnie. I am grandmother to Lindsey who just turned 6 years old. My self and the other Grandmother take care of Lindsey 2 days/week so her mother can go to work to get the medical insurance since her husbad has his own business. Lindsey has PMG. Lindsey cannot talk, walk,crawl or even hold her bottle. Her brain malformation takes the form of cerebral palsy. Her main source of nutrition is Pedisure in a bottle. She can't seem to concentrate so as others can feed her in a setting outside the home. Today she started a special -ed kindergarten program which has 7 students, one teacher and three aids. My daughter, in her heart didn't want her to go to school because she didn't see how Lindsey could benefit from it. She is cognitavely impared as well. Because she was pressured by the school system telling her it was a legal thing Lindsey did attend. Lindsey had to be awakened at 6:30 A.M. (usually sleeps till 9a.m.), quick given a bottle and rushed off to her first day of school. She can't eat till my daughter picks her up at 10:45a.m. This sort of leaves Lindsey lethargaic and very sleepy. We do realize like any other child she needs to get into a routine of going to bed earlier so she will be able to wake up on her own and feel better. When my daughter picked Lindsey up from school today her bib and diaper were both soaked leaving her with a poor impression of the first day of school. She decided to wait till after tomorrow to see what happens before addressing her concerns. I just hope they don't put Lindsey in her chair and just forget about her since all the other children can walk etc. After school which Lindsey seemed to love, they went home. My daughter fed Lindsey and they both fell asleep in the chair. After about 1 hour of sound sleeping, Lindsey woke up, eyes looking big and startled she started to seiz. Her lips turned blue as well. My daughter from working at the hospital immediately turned her on her side with chin up to keep the airway open. She then called me to come over to her house. The seizure only lasted about 1 minute. Lindsey slept extremely sound for about 3 hours. She normally hears a pin drop which wakes her up. When she woke up she was her old self laughing and watching her Grinch DVD. called the pedetriation to report the seziure and he told her that as long as she was able to arouse her (which she did) things would be O.K. The doctor said to keep her home tomorrow so she could keep an eye on her. The school certainly won't like that! was though scared to death. She handled it well but after everything was over I thought she was going to pass out. She is usually very strong but she broke down in tears. My heart broke. She will make an appointment to for Lindsey to see her neurologist at Chicago Children's Memorial. She hahsn't seem him in several years. Does anyone have any ideas of what they will do when she sees the neurologist? Sleep study, MRI, EEG? At some point and I remember someone saying that seizures can be triggered by sleep deprivation. Due to the fact that she was awakened so ealry and only given 1 bottle vs a bottle and cereal then sent off to school I can't but wonder if the lack of sleep might have triggered this seizure today. I don't post much but I surley would appreciate any input on the subject of first time sezuries. Didn't mean for this to be so long but I wan'ted to explain it thoroughly to you so you could understand where we are coming from. Thank you all in advance. Blessing, Bonnie (grandmother to Lindsey 6 years old with severe PMG No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.6.3/1613 - Release Date: 8/15/2008 5:58 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2008 Report Share Posted August 15, 2008 Thank you for all the valuable information. It helps me allot to understand exactly what we are dealing with. I will pass this information along to my daughter and son-in-law. I appreciate you taking the time to respond and educate me on the subject of seizures and her education. Blessings, Bonnie While helping Lindsey get an education is the law... Your daughter does not have to send her to school to do so. Of course the school will not let you in on all the " secrets " because it is easier and cheaper for them to bully uniformed parents into placing their child in the school building. I have been lied too and threatened with loss of services for Carver by the school... But, I got informed and Carver gets all his therapies and teacher in our home... around his schedule. Knowledge is the best weapon when dealing with the school. Please let me know if I can help in any way! and Carver Hickory, NC _____ From: polymicrogyria@ yahoogroups. com [mailto:polymicrogy ria@ yahoogroups. com] On Behalf Of Bonita Zagrovich Sent: Friday, August 15, 2008 1:40 AM To: polymicrogyria@ yahoogroups. com Subject: FIRST SIEZURE Hello Everyone: My name is Bonnie. I am grandmother to Lindsey who just turned 6 years old. My self and the other Grandmother take care of Lindsey 2 days/week so her mother can go to work to get the medical insurance since her husbad has his own business. Lindsey has PMG. Lindsey cannot talk, walk,crawl or even hold her bottle. Her brain malformation takes the form of cerebral palsy. Her main source of nutrition is Pedisure in a bottle. She can't seem to concentrate so as others can feed her in a setting outside the home. Today she started a special -ed kindergarten program which has 7 students, one teacher and three aids. My daughter, in her heart didn't want her to go to school because she didn't see how Lindsey could benefit from it. She is cognitavely impared as well. Because she was pressured by the school system telling her it was a legal thing Lindsey did attend. Lindsey had to be awakened at 6:30 A.M. (usually sleeps till 9a.m.), quick given a bottle and rushed off to her first day of school. She can't eat till my daughter picks her up at 10:45a.m. This sort of leaves Lindsey lethargaic and very sleepy. We do realize like any other child she needs to get into a routine of going to bed earlier so she will be able to wake up on her own and feel better. When my daughter picked Lindsey up from school today her bib and diaper were both soaked leaving her with a poor impression of the first day of school. She decided to wait till after tomorrow to see what happens before addressing her concerns. I just hope they don't put Lindsey in her chair and just forget about her since all the other children can walk etc. After school which Lindsey seemed to love, they went home. My daughter fed Lindsey and they both fell asleep in the chair. After about 1 hour of sound sleeping, Lindsey woke up, eyes looking big and startled she started to seiz. Her lips turned blue as well. My daughter from working at the hospital immediately turned her on her side with chin up to keep the airway open. She then called me to come over to her house. The seizure only lasted about 1 minute. Lindsey slept extremely sound for about 3 hours. She normally hears a pin drop which wakes her up. When she woke up she was her old self laughing and watching her Grinch DVD. called the pedetriation to report the seziure and he told her that as long as she was able to arouse her (which she did) things would be O.K. The doctor said to keep her home tomorrow so she could keep an eye on her. The school certainly won't like that! was though scared to death. She handled it well but after everything was over I thought she was going to pass out. She is usually very strong but she broke down in tears. My heart broke. She will make an appointment to for Lindsey to see her neurologist at Chicago Children's Memorial. She hahsn't seem him in several years. Does anyone have any ideas of what they will do when she sees the neurologist? Sleep study, MRI, EEG? At some point and I remember someone saying that seizures can be triggered by sleep deprivation. Due to the fact that she was awakened so ealry and only given 1 bottle vs a bottle and cereal then sent off to school I can't but wonder if the lack of sleep might have triggered this seizure today. I don't post much but I surley would appreciate any input on the subject of first time sezuries. Didn't mean for this to be so long but I wan'ted to explain it thoroughly to you so you could understand where we are coming from. Thank you all in advance. Blessing, Bonnie (grandmother to Lindsey 6 years old with severe PMG No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.6.3/1613 - Release Date: 8/15/2008 5:58 AM Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.