Role Call/Update....very long....super long......novel material in fact....sorry

[Guest guest]

Hello to all, thought it was time that we brought everyone up to speed on

Carver, and to let all the new families know who we are. I think our signature

line does a good job summing us up, however here are a few more details. We are

Mike and Elmore, we live in Hickory NC. I am a Registered Nurse and Mike

has survived the recent layoffs at Corning Cable Systems. (He however has been

moved back to night shift). We live pretty close to Carver's grandparents, who

are also members on the loop. (Hi mom!) We have 4 children, (3 of which Mike

is a wonderful step-dad to), Carver is our youngest and also our Liss child. We

would like one more child so the recent flurry of e-mails about children after

liss have been very welcoming. Thanks for all the info everyone has shared.

And now for something completely different. (Where is that line from Lenny?

BTW to answer you..... Rabbit said that). Carver has been diagnosed with

Bilateral Perisylvian PMG, aka BPP. (When we joined we had no idea what some of

the abbreviations meant, so keep in mind the new families may not either.)

Carver was diagnosed at about 4 1/2 months with Infantile Spasms, aka IS. We

did not recognize his seizures for what they were until that time. Carver had

started having seizures at 2 1/2 months, but we attributed it to " baby

activity " , gas, fussiness. His seizures were so subtle we just didn't know. I

would also like to add that his seizures started 2 weeks after his first round

of vaccinations. Our Neuro has tried to convince me that there is no

connection, however, he has not succeeded. We have decided to not allow Carver

to have anymore DPaT injections because that is where the controversy lies.

Carver was immediately hospitalized to start ACTH treatment for the IS. While

there a MRI was done and we got the diagnosis of Liss. It was not until later

that Dr. Dobyns confirmed the PMG diagnosis. While on this topic I would like

to throw out that even after a heated debate with our Neuro, I feel that Liss

and IS are two separate entities. I feel that it is possible to have one

without the other and PMG is not necessarily the cause for our sons IS. Hope

that makes sense to all, e-mail me if you wish and I will elaborate. Moving on,

Carver responded well to the ACTH therapy. We handled the side effects as they

came along. At the end of Aug. a repeat EEG showed that Carver's hypsarrythmia

was gone, but showed a potential for future seizure activity. Carver was

started on Topamax at that time. He did well at first, despite the huge

decrease in his appetite. By mid Dec. Mike noted seizure activity and the MD

was notified. To make a long story short..........an EEG was done and nothing

else. We had an appt. with the Neuro on 2/11 and he made us feel like it was

our fault because nothing was done about Carver's seizure's. We are now

currently seeking a new Neuro......hopefully one that will try to help. We

tried increasing Carver's Topamax, but when his appetite was depressed to the

point of only taking 8 OZ. a day, something had to change. Some of you will

remember me asking advice on seizure drugs, that was because the Neuro told us

to choose one. (Thanks) I even had to do the research to diagnose the types of

seizures Carver was having. Presently, we are weaning onto Lamictal and off the

Topamax. I am wondering if that Zonegran would have been the better choice, but

I just wanted to get some help for our son. FYI, Zonegran is the only med that

specifically is useful for myoclonic seizures. All other meds are for partial

seizures, and all meds generally don't work alone.

I think that is more than enough for now. Will keep all posted on how Carver's

treatment goes. For the most part Carver is a healthy, happy little guy. He

was 1 on Jan. 18th. He gets early intervention services, and they have been

fabulous. A nutritionist is following him, (he is doing great on the Benefiber!

Just trying to get the dosing right.) A physical therapist is to be contacting

us to get started on some weight bearing exercises. (We have pretty much

mastered head control, and are working on sitting). We also have a geneticist

on our early intervention team, Carver goes for his blood test tomorrow to look

for MDS, and WWS. I am sure there is much more that I could tell you, but if

you read this far.........thanks.

Best of hopes and dreams for all our children,

and Mike parents to Drey 17 who knows EVERYTHING, just ask her,

(stay off the NC roads.... she now has a driving permit),

Wesley 14 1/2, an aspiring dentist who is proudly part of JRROTC,

Jordan 8, who can not possibly be quiet or sit still for 10 minutes,

and Carver 1 year with BPP, the happiest little guy in the world with the bluest

eyes EVER!

[Guest guest]

Mike and --

Hi! Is your insurance going to pay for the genetic testing? Where is the lab?

Just curious because BC/BS of NC told me that we had to prove medical necessity

aka " would make a difference in the quality of life " before they would pick up

the tab. Thanks. Vicki

Role Call/Update....very long....super

long......novel material in fact....sorry

Hello to all, thought it was time that we brought everyone up to speed on

Carver, and to let all the new families know who we are. I think our signature

line does a good job summing us up, however here are a few more details. We are

Mike and Elmore, we live in Hickory NC. I am a Registered Nurse and Mike

has survived the recent layoffs at Corning Cable Systems. (He however has been

moved back to night shift). We live pretty close to Carver's grandparents, who

are also members on the loop. (Hi mom!) We have 4 children, (3 of which Mike

is a wonderful step-dad to), Carver is our youngest and also our Liss child. We

would like one more child so the recent flurry of e-mails about children after

liss have been very welcoming. Thanks for all the info everyone has shared.

And now for something completely different. (Where is that line from Lenny?

BTW to answer you..... Rabbit said that). Carver has been diagnosed with

Bilateral Perisylvian PMG, aka BPP. (When we joined we had no idea what some of

the abbreviations meant, so keep in mind the new families may not either.)

Carver was diagnosed at about 4 1/2 months with Infantile Spasms, aka IS. We

did not recognize his seizures for what they were until that time. Carver had

started having seizures at 2 1/2 months, but we attributed it to " baby

activity " , gas, fussiness. His seizures were so subtle we just didn't know. I

would also like to add that his seizures started 2 weeks after his first round

of vaccinations. Our Neuro has tried to convince me that there is no

connection, however, he has not succeeded. We have decided to not allow Carver

to have anymore DPaT injections because that is where the controv! ersy lies.

Carver was immediately hospitalized to start ACTH treatment for the IS. While

there a MRI was done and we got the diagnosis of Liss. It was not until later

that Dr. Dobyns confirmed the PMG diagnosis. While on this topic I would like

to throw out that even after a heated debate with our Neuro, I feel that Liss

and IS are two separate entities. I feel that it is possible to have one

without the other and PMG is not necessarily the cause for our sons IS. Hope

that makes sense to all, e-mail me if you wish and I will elaborate. Moving on,

Carver responded well to the ACTH therapy. We handled the side effects as they

came along. At the end of Aug. a repeat EEG showed that Carver's hypsarrythmia

was gone, but showed a potential for future seizure activity. Carver was

started on Topamax at that time. He did well at first, despite the huge

decrease in his appetite. By mid Dec. Mike noted seizure acti! vity and the MD

was notified. To make a long story short..........an EEG was done and nothing

else. We had an appt. with the Neuro on 2/11 and he made us feel like it was

our fault because nothing was done about Carver's seizure's. We are now

currently seeking a new Neuro......hopefully one that will try to help. We

tried increasing Carver's Topamax, but when his appetite was depressed to the

point of only taking 8 OZ. a day, something had to change. Some of you will

remember me asking advice on seizure drugs, that was because the Neuro told us

to choose one. (Thanks) I even had to do the research to diagnose the types of

seizures Carver was having. Presently, we are weaning onto Lamictal and off the

Topamax. I am wondering if that Zonegran would have been the better choice, but

I just wanted to get some help for our son. FYI, Zonegran is the only med that

specifically is useful for myoclonic seizures. All oth! er meds are for partial

seizures, and all meds generally don't work alone.

I think that is more than enough for now. Will keep all posted on how

Carver's treatment goes. For the most part Carver is a healthy, happy little

guy. He was 1 on Jan. 18th. He gets early intervention services, and they have

been fabulous. A nutritionist is following him, (he is doing great on the

Benefiber! Just trying to get the dosing right.) A physical therapist is to be

contacting us to get started on some weight bearing exercises. (We have pretty

much mastered head control, and are working on sitting). We also have a

geneticist on our early intervention team, Carver goes for his blood test

tomorrow to look for MDS, and WWS. I am sure there is much more that I could

tell you, but if you read this far.........thanks.

Best of hopes and dreams for all our children,

and Mike parents to Drey 17 who knows EVERYTHING, just ask her,

(stay off the NC roads.... she now has a driving permit),

Wesley 14 1/2, an aspiring dentist who is proudly part of JRROTC,

Jordan 8, who can not possibly be quiet or sit still for 10 minutes,

and Carver 1 year with BPP, the happiest little guy in the world with the

bluest eyes EVER!

[Guest guest]

Mike and --

Hi! Is your insurance going to pay for the genetic testing? Where is the lab?

Just curious because BC/BS of NC told me that we had to prove medical necessity

aka " would make a difference in the quality of life " before they would pick up

the tab. Thanks. Vicki

Role Call/Update....very long....super

long......novel material in fact....sorry

Hello to all, thought it was time that we brought everyone up to speed on

Carver, and to let all the new families know who we are. I think our signature

line does a good job summing us up, however here are a few more details. We are

Mike and Elmore, we live in Hickory NC. I am a Registered Nurse and Mike

has survived the recent layoffs at Corning Cable Systems. (He however has been

moved back to night shift). We live pretty close to Carver's grandparents, who

are also members on the loop. (Hi mom!) We have 4 children, (3 of which Mike

is a wonderful step-dad to), Carver is our youngest and also our Liss child. We

would like one more child so the recent flurry of e-mails about children after

liss have been very welcoming. Thanks for all the info everyone has shared.

And now for something completely different. (Where is that line from Lenny?

BTW to answer you..... Rabbit said that). Carver has been diagnosed with

Bilateral Perisylvian PMG, aka BPP. (When we joined we had no idea what some of

the abbreviations meant, so keep in mind the new families may not either.)

Carver was diagnosed at about 4 1/2 months with Infantile Spasms, aka IS. We

did not recognize his seizures for what they were until that time. Carver had

started having seizures at 2 1/2 months, but we attributed it to " baby

activity " , gas, fussiness. His seizures were so subtle we just didn't know. I

would also like to add that his seizures started 2 weeks after his first round

of vaccinations. Our Neuro has tried to convince me that there is no

connection, however, he has not succeeded. We have decided to not allow Carver

to have anymore DPaT injections because that is where the controv! ersy lies.

Carver was immediately hospitalized to start ACTH treatment for the IS. While

there a MRI was done and we got the diagnosis of Liss. It was not until later

that Dr. Dobyns confirmed the PMG diagnosis. While on this topic I would like

to throw out that even after a heated debate with our Neuro, I feel that Liss

and IS are two separate entities. I feel that it is possible to have one

without the other and PMG is not necessarily the cause for our sons IS. Hope

that makes sense to all, e-mail me if you wish and I will elaborate. Moving on,

Carver responded well to the ACTH therapy. We handled the side effects as they

came along. At the end of Aug. a repeat EEG showed that Carver's hypsarrythmia

was gone, but showed a potential for future seizure activity. Carver was

started on Topamax at that time. He did well at first, despite the huge

decrease in his appetite. By mid Dec. Mike noted seizure acti! vity and the MD

was notified. To make a long story short..........an EEG was done and nothing

else. We had an appt. with the Neuro on 2/11 and he made us feel like it was

our fault because nothing was done about Carver's seizure's. We are now

currently seeking a new Neuro......hopefully one that will try to help. We

tried increasing Carver's Topamax, but when his appetite was depressed to the

point of only taking 8 OZ. a day, something had to change. Some of you will

remember me asking advice on seizure drugs, that was because the Neuro told us

to choose one. (Thanks) I even had to do the research to diagnose the types of

seizures Carver was having. Presently, we are weaning onto Lamictal and off the

Topamax. I am wondering if that Zonegran would have been the better choice, but

I just wanted to get some help for our son. FYI, Zonegran is the only med that

specifically is useful for myoclonic seizures. All oth! er meds are for partial

seizures, and all meds generally don't work alone.

I think that is more than enough for now. Will keep all posted on how

Carver's treatment goes. For the most part Carver is a healthy, happy little

guy. He was 1 on Jan. 18th. He gets early intervention services, and they have

been fabulous. A nutritionist is following him, (he is doing great on the

Benefiber! Just trying to get the dosing right.) A physical therapist is to be

contacting us to get started on some weight bearing exercises. (We have pretty

much mastered head control, and are working on sitting). We also have a

geneticist on our early intervention team, Carver goes for his blood test

tomorrow to look for MDS, and WWS. I am sure there is much more that I could

tell you, but if you read this far.........thanks.

Best of hopes and dreams for all our children,

and Mike parents to Drey 17 who knows EVERYTHING, just ask her,

(stay off the NC roads.... she now has a driving permit),

Wesley 14 1/2, an aspiring dentist who is proudly part of JRROTC,

Jordan 8, who can not possibly be quiet or sit still for 10 minutes,

and Carver 1 year with BPP, the happiest little guy in the world with the

bluest eyes EVER!

[Guest guest]

Mike and --

Hi! Is your insurance going to pay for the genetic testing? Where is the lab?

Just curious because BC/BS of NC told me that we had to prove medical necessity

aka " would make a difference in the quality of life " before they would pick up

the tab. Thanks. Vicki

Role Call/Update....very long....super

long......novel material in fact....sorry

Hello to all, thought it was time that we brought everyone up to speed on

Carver, and to let all the new families know who we are. I think our signature

line does a good job summing us up, however here are a few more details. We are

Mike and Elmore, we live in Hickory NC. I am a Registered Nurse and Mike

has survived the recent layoffs at Corning Cable Systems. (He however has been

moved back to night shift). We live pretty close to Carver's grandparents, who

are also members on the loop. (Hi mom!) We have 4 children, (3 of which Mike

is a wonderful step-dad to), Carver is our youngest and also our Liss child. We

would like one more child so the recent flurry of e-mails about children after

liss have been very welcoming. Thanks for all the info everyone has shared.

And now for something completely different. (Where is that line from Lenny?

BTW to answer you..... Rabbit said that). Carver has been diagnosed with

Bilateral Perisylvian PMG, aka BPP. (When we joined we had no idea what some of

the abbreviations meant, so keep in mind the new families may not either.)

Carver was diagnosed at about 4 1/2 months with Infantile Spasms, aka IS. We

did not recognize his seizures for what they were until that time. Carver had

started having seizures at 2 1/2 months, but we attributed it to " baby

activity " , gas, fussiness. His seizures were so subtle we just didn't know. I

would also like to add that his seizures started 2 weeks after his first round

of vaccinations. Our Neuro has tried to convince me that there is no

connection, however, he has not succeeded. We have decided to not allow Carver

to have anymore DPaT injections because that is where the controv! ersy lies.

Carver was immediately hospitalized to start ACTH treatment for the IS. While

there a MRI was done and we got the diagnosis of Liss. It was not until later

that Dr. Dobyns confirmed the PMG diagnosis. While on this topic I would like

to throw out that even after a heated debate with our Neuro, I feel that Liss

and IS are two separate entities. I feel that it is possible to have one

without the other and PMG is not necessarily the cause for our sons IS. Hope

that makes sense to all, e-mail me if you wish and I will elaborate. Moving on,

Carver responded well to the ACTH therapy. We handled the side effects as they

came along. At the end of Aug. a repeat EEG showed that Carver's hypsarrythmia

was gone, but showed a potential for future seizure activity. Carver was

started on Topamax at that time. He did well at first, despite the huge

decrease in his appetite. By mid Dec. Mike noted seizure acti! vity and the MD

was notified. To make a long story short..........an EEG was done and nothing

else. We had an appt. with the Neuro on 2/11 and he made us feel like it was

our fault because nothing was done about Carver's seizure's. We are now

currently seeking a new Neuro......hopefully one that will try to help. We

tried increasing Carver's Topamax, but when his appetite was depressed to the

point of only taking 8 OZ. a day, something had to change. Some of you will

remember me asking advice on seizure drugs, that was because the Neuro told us

to choose one. (Thanks) I even had to do the research to diagnose the types of

seizures Carver was having. Presently, we are weaning onto Lamictal and off the

Topamax. I am wondering if that Zonegran would have been the better choice, but

I just wanted to get some help for our son. FYI, Zonegran is the only med that

specifically is useful for myoclonic seizures. All oth! er meds are for partial

seizures, and all meds generally don't work alone.

I think that is more than enough for now. Will keep all posted on how

Carver's treatment goes. For the most part Carver is a healthy, happy little

guy. He was 1 on Jan. 18th. He gets early intervention services, and they have

been fabulous. A nutritionist is following him, (he is doing great on the

Benefiber! Just trying to get the dosing right.) A physical therapist is to be

contacting us to get started on some weight bearing exercises. (We have pretty

much mastered head control, and are working on sitting). We also have a

geneticist on our early intervention team, Carver goes for his blood test

tomorrow to look for MDS, and WWS. I am sure there is much more that I could

tell you, but if you read this far.........thanks.

Best of hopes and dreams for all our children,

and Mike parents to Drey 17 who knows EVERYTHING, just ask her,

(stay off the NC roads.... she now has a driving permit),

Wesley 14 1/2, an aspiring dentist who is proudly part of JRROTC,

Jordan 8, who can not possibly be quiet or sit still for 10 minutes,

and Carver 1 year with BPP, the happiest little guy in the world with the

bluest eyes EVER!