Re: Re: some questions about Dr. Dobbyns

[Guest guest]

Sue, just curious, how did they determine that it was CMV that caused the PMG?

Was there a test or was it their " best guess " . I too was told that CMV caused

my daughters PMG but they never really said how they cam to that conclusion.

Thanks

Ruth (mom to Brit, 13)

ryansmom0801 wrote:

Hi ,

My son recently turned 4 and has bilateral fronto-parietal PMG

and microcephaly. We too, had our diagnosis of PMG at a very early

age. 's first MRI was at 3 months and we found out about it

then. The geneticist never accepted PMG as a final diagnosis, so we

didnt either and spent countless hours doing every genetic and

metabolic test she could dream up. We finally gave up and decided to

concentrate on 's delays with PT, OT and ST, rather than the

cause of them.

We just saw Dr Dobyns and Dr Chang(from Dr Walsh's Harvard study) in

July and because of that visit, we finally have the cause. Turns out

's PMG is related to a CMV infection I unknowingly had while

pregnant. That alone was worth the trip (although it doesnt change

anything). The only thing you need to bring with you is your son's

MRI films. I feel I must warn you to prepare yourself to hear things

you might find unpleasant. I asked every question I had ever wanted

to ask, but got a few answers I didnt like.

is a very happy child. He walks in a gait trainer, rolls and

commando crawls everywhere, sits with minimal support for hours, but

less than a minute unsupported. He says " no " occasionally and can

shake his head " yes " and " no " appropriately. He can remove and

replace a knobbed puzzle piece, turn the page of a cardboard backed

book while I read to him, turn his switch and some battery operated

toys on and off, etc etc . He doesnt miss a thing and we know, he's

got a lot more going on inside than he can express. He eats a pureed

diet but can chew and swallow some softer whole foods. We also had

weight problems until, on the GI Drs advice, we supplemented 2 cups

of milk for 2 cans of Pediasure with fiber daily. He went from the

5th percentile in weight to the 75th and now weighs 35 lbs and is 40

inches tall.

Drs Dobyns and Chang asked for this kind of background info during

our visit, yet they still told me things like " he will likely walk,

but walking will probably not be his primary means of

transportation " and " he may say a few words, but I dont know how

extensive his vocabulary will be " I had asked them if he would be

mentally retarded and they told me " he is mentally retarded " to

which I filled up with tears, and then they explained that the

severity may be as little as some mild learning disorders. Dr Dobyns

also told me that had he seen 's scans first before meeting him,

he would expect to see a much more severly affected child. When I

relayed this to 's pediatrician when we got back, he said " see

he's already exceeding their expectations, the brain is the final

frontier, there are no absolutes " .

All in all I am glad we went and if your son's PMG is genetic in

nature, Dr Dobyns will probably admit him to his research study if

you're willing. I just wanted you to be prepared. He is very nice,

and none of what he told me was said without empathy, but warm and

fuzzy, he is not.

Good luck.

Sue

> Hi everyone my name is . My 2 1/2 year old son Caleb was

> diagnosed with PMG when he was 11 months old after his first

> seizure. He is a happy little boy with a contagious smile. We go

to

> all the pt, ot, speech appts. We are working very hard on the

gait

> trainer he is so cute he goes backwards. but hey he is going. I

> have been reading posts for a while. You guys seem like a

> wonderful group of parents. We are so excited we found out the

info

> about Dr. Dobbyns. Has anyone been to see him and what did you

> think.? What do you have to prepare for an appt.?

> I also was wondering if other children have been on Trileptal

for

> seizures. Caleb has been on it for 1 1/2 years now. It is going

> good except that he has not gained hardly any weight and we are

> wondering if maybe that has something to do with it. The docs say

> not likely but still I wonder. They are very concerned about his

> weight. They are talking about a feeding tube and i would hate to

do

> it only to find out later it is from his meds. Any info would be

> great. Also his neuro is considering Depakote. Any experiences

with

> that.

> Now I have one other question on a happy note. We live in

oregon

> any one out there in the north west.

>

> , Caleb (pmg)2 1/2, D.J.7yrs old

[Guest guest]

Ruth,

My name is Serina McCoy and my daughter (16 months) has the same

diagnosis. Bilaterial Temporal Frontal Pariatal (sp) PMG and microcephaly

caused by a CMV infection. She had a blood test done to test for CMV becuase of

the small head. The blood test showed positive cmv antibodies conclusive with a

current infection. It was done a day or two after birth. I was also told by

the doctors in Boston (Walsh and Chang) that the pattern of the white matter on

her MRI was consistant with that of a CMV infection. Liz is also 65% deaf in one

ear due to the CMV infection. Hope that helps.

Serina (mom to Liz, 16 months)

Ruth wrote:

Sue, just curious, how did they determine that it was CMV that caused the PMG?

Was there a test or was it their " best guess " . I too was told that CMV caused

my daughters PMG but they never really said how they cam to that conclusion.

Thanks

Ruth (mom to Brit, 13)

ryansmom0801 wrote:

Hi ,

My son recently turned 4 and has bilateral fronto-parietal PMG

and microcephaly. We too, had our diagnosis of PMG at a very early

age. 's first MRI was at 3 months and we found out about it

then. The geneticist never accepted PMG as a final diagnosis, so we

didnt either and spent countless hours doing every genetic and

metabolic test she could dream up. We finally gave up and decided to

concentrate on 's delays with PT, OT and ST, rather than the

cause of them.

We just saw Dr Dobyns and Dr Chang(from Dr Walsh's Harvard study) in

July and because of that visit, we finally have the cause. Turns out

's PMG is related to a CMV infection I unknowingly had while

pregnant. That alone was worth the trip (although it doesnt change

anything). The only thing you need to bring with you is your son's

MRI films. I feel I must warn you to prepare yourself to hear things

you might find unpleasant. I asked every question I had ever wanted

to ask, but got a few answers I didnt like.

is a very happy child. He walks in a gait trainer, rolls and

commando crawls everywhere, sits with minimal support for hours, but

less than a minute unsupported. He says " no " occasionally and can

shake his head " yes " and " no " appropriately. He can remove and

replace a knobbed puzzle piece, turn the page of a cardboard backed

book while I read to him, turn his switch and some battery operated

toys on and off, etc etc . He doesnt miss a thing and we know, he's

got a lot more going on inside than he can express. He eats a pureed

diet but can chew and swallow some softer whole foods. We also had

weight problems until, on the GI Drs advice, we supplemented 2 cups

of milk for 2 cans of Pediasure with fiber daily. He went from the

5th percentile in weight to the 75th and now weighs 35 lbs and is 40

inches tall.

Drs Dobyns and Chang asked for this kind of background info during

our visit, yet they still told me things like " he will likely walk,

but walking will probably not be his primary means of

transportation " and " he may say a few words, but I dont know how

extensive his vocabulary will be " I had asked them if he would be

mentally retarded and they told me " he is mentally retarded " to

which I filled up with tears, and then they explained that the

severity may be as little as some mild learning disorders. Dr Dobyns

also told me that had he seen 's scans first before meeting him,

he would expect to see a much more severly affected child. When I

relayed this to 's pediatrician when we got back, he said " see

he's already exceeding their expectations, the brain is the final

frontier, there are no absolutes " .

All in all I am glad we went and if your son's PMG is genetic in

nature, Dr Dobyns will probably admit him to his research study if

you're willing. I just wanted you to be prepared. He is very nice,

and none of what he told me was said without empathy, but warm and

fuzzy, he is not.

Good luck.

Sue

> Hi everyone my name is . My 2 1/2 year old son Caleb was

> diagnosed with PMG when he was 11 months old after his first

> seizure. He is a happy little boy with a contagious smile. We go

to

> all the pt, ot, speech appts. We are working very hard on the

gait

> trainer he is so cute he goes backwards. but hey he is going. I

> have been reading posts for a while. You guys seem like a

> wonderful group of parents. We are so excited we found out the

info

> about Dr. Dobbyns. Has anyone been to see him and what did you

> think.? What do you have to prepare for an appt.?

> I also was wondering if other children have been on Trileptal

for

> seizures. Caleb has been on it for 1 1/2 years now. It is going

> good except that he has not gained hardly any weight and we are

> wondering if maybe that has something to do with it. The docs say

> not likely but still I wonder. They are very concerned about his

> weight. They are talking about a feeding tube and i would hate to

do

> it only to find out later it is from his meds. Any info would be

> great. Also his neuro is considering Depakote. Any experiences

with

> that.

> Now I have one other question on a happy note. We live in

oregon

> any one out there in the north west.

>

> , Caleb (pmg)2 1/2, D.J.7yrs old

[Guest guest]

Thanks Serina,

There was bloodwork done when she was born and she had a 10/10 apgar and were

sent home with a presumable normal baby. She was diagnosed at 10 months from

her MRI, so that may have been how they concluded. This was so long ago, I

can't really remember. It was their " best guess " is what they told me.

My daughter is blind and deaf, severely retarded and severaly disabled. Its

hard to believe all the things the kids with PMG on this site can do, and my

angel cannot do anything. I wonder if Dr. Dobyns saw her MRIs from years ago,

if he could tell by them how severely it affected her. Some of the MRIs he

reads makes him believe the child is severe and then he sees them walking and so

forth and is surprised. i was told Brit wouldn't live past age 2, and she is

13. But has not had much of a life, just a constant struggle.

We can only take one day at a time I guess.

Thanks

Ruth

Serina McCoy wrote:

Ruth,

My name is Serina McCoy and my daughter (16 months) has the same

diagnosis. Bilaterial Temporal Frontal Pariatal (sp) PMG and microcephaly

caused by a CMV infection. She had a blood test done to test for CMV becuase of

the small head. The blood test showed positive cmv antibodies conclusive with a

current infection. It was done a day or two after birth. I was also told by

the doctors in Boston (Walsh and Chang) that the pattern of the white matter on

her MRI was consistant with that of a CMV infection. Liz is also 65% deaf in one

ear due to the CMV infection. Hope that helps.

Serina (mom to Liz, 16 months)

Ruth wrote:

Sue, just curious, how did they determine that it was CMV that caused the PMG?

Was there a test or was it their " best guess " . I too was told that CMV caused

my daughters PMG but they never really said how they cam to that conclusion.

Thanks

Ruth (mom to Brit, 13)

ryansmom0801 wrote:

Hi ,

My son recently turned 4 and has bilateral fronto-parietal PMG

and microcephaly. We too, had our diagnosis of PMG at a very early

age. 's first MRI was at 3 months and we found out about it

then. The geneticist never accepted PMG as a final diagnosis, so we

didnt either and spent countless hours doing every genetic and

metabolic test she could dream up. We finally gave up and decided to

concentrate on 's delays with PT, OT and ST, rather than the

cause of them.

We just saw Dr Dobyns and Dr Chang(from Dr Walsh's Harvard study) in

July and because of that visit, we finally have the cause. Turns out

's PMG is related to a CMV infection I unknowingly had while

pregnant. That alone was worth the trip (although it doesnt change

anything). The only thing you need to bring with you is your son's

MRI films. I feel I must warn you to prepare yourself to hear things

you might find unpleasant. I asked every question I had ever wanted

to ask, but got a few answers I didnt like.

is a very happy child. He walks in a gait trainer, rolls and

commando crawls everywhere, sits with minimal support for hours, but

less than a minute unsupported. He says " no " occasionally and can

shake his head " yes " and " no " appropriately. He can remove and

replace a knobbed puzzle piece, turn the page of a cardboard backed

book while I read to him, turn his switch and some battery operated

toys on and off, etc etc . He doesnt miss a thing and we know, he's

got a lot more going on inside than he can express. He eats a pureed

diet but can chew and swallow some softer whole foods. We also had

weight problems until, on the GI Drs advice, we supplemented 2 cups

of milk for 2 cans of Pediasure with fiber daily. He went from the

5th percentile in weight to the 75th and now weighs 35 lbs and is 40

inches tall.

Drs Dobyns and Chang asked for this kind of background info during

our visit, yet they still told me things like " he will likely walk,

but walking will probably not be his primary means of

transportation " and " he may say a few words, but I dont know how

extensive his vocabulary will be " I had asked them if he would be

mentally retarded and they told me " he is mentally retarded " to

which I filled up with tears, and then they explained that the

severity may be as little as some mild learning disorders. Dr Dobyns

also told me that had he seen 's scans first before meeting him,

he would expect to see a much more severly affected child. When I

relayed this to 's pediatrician when we got back, he said " see

he's already exceeding their expectations, the brain is the final

frontier, there are no absolutes " .

All in all I am glad we went and if your son's PMG is genetic in

nature, Dr Dobyns will probably admit him to his research study if

you're willing. I just wanted you to be prepared. He is very nice,

and none of what he told me was said without empathy, but warm and

fuzzy, he is not.

Good luck.

Sue

> Hi everyone my name is . My 2 1/2 year old son Caleb was

> diagnosed with PMG when he was 11 months old after his first

> seizure. He is a happy little boy with a contagious smile. We go

to

> all the pt, ot, speech appts. We are working very hard on the

gait

> trainer he is so cute he goes backwards. but hey he is going. I

> have been reading posts for a while. You guys seem like a

> wonderful group of parents. We are so excited we found out the

info

> about Dr. Dobbyns. Has anyone been to see him and what did you

> think.? What do you have to prepare for an appt.?

> I also was wondering if other children have been on Trileptal

for

> seizures. Caleb has been on it for 1 1/2 years now. It is going

> good except that he has not gained hardly any weight and we are

> wondering if maybe that has something to do with it. The docs say

> not likely but still I wonder. They are very concerned about his

> weight. They are talking about a feeding tube and i would hate to

do

> it only to find out later it is from his meds. Any info would be

> great. Also his neuro is considering Depakote. Any experiences

with

> that.

> Now I have one other question on a happy note. We live in

oregon

> any one out there in the north west.

>

> , Caleb (pmg)2 1/2, D.J.7yrs old

[Guest guest]

THanks Sue,

I was told that everyone gets CMV at one time or other in their life, and it can

come in the form of a cold, or a sore throat or the flu, etc., and that once you

have had it, your'e done with it. However, in the event that you somehow

contract it when you are in your first trimester, this is where the trouble is.

I was never sick a day in my pregnancy, no morning sickness or anything. BUT,

when I was 8 weeks pregnant, i got sick, I thought from something I ate, that

lasted about 24 hours, and my guess is that is was the CMV virus. So when I

asked the doctor if this could happen to another child I had, he said 99% chance

t his would never happen again. Of couse, even if he told me 100%, I was never

going to take the chance of bringing another child into the world that would

have to live like my duaghter does every day.

They should find a vaccine against this virus.

THanks again, best regards,

Ruth

ryansmom0801 wrote:

Hi Ruth.

No there was no test. Apparently, to test for CMV in infants, it

must be done immediately after birth, before leaving the hospital.

Exposure is so common that they feel the only way to get an accurate

result is to have testing done before they have been exposed to the

outside world. I had to push the Drs at the hospital where I gave

birth to even take a second look at his head. They thought

everything was fine, but I kept telling anyone who would listen to

me to look how small his head was. They finally decided to write him

up as having Microcephaly about an hour before we were discharged

home.

Drs Dobyns and Chang first looked at his MRI films and stated they

thought his PMG might be related to CMV. When they looked at his CT

films and saw the small areas of calcification in his brain, they

said they were 95% sure that it was CMV. They said that the white

matter was consistent with CMV infection and that the pattern of

Gyria was such that it appeared that at one time the brain was

larger and then the virus attacked it and it basically shrunk. They

said he had " hallmark signs " of a CMV infection and that the only

signs he did not have were " retinal patches " and hearing loss.

So, I guess you would say his diagnosis is a " best guess " , and it

still leaves me with questions that they cant answer. I asked Dr

Dobyns " If, by his own calculations, 80-90% of the population have

been exposed to CMV and I have been a nurse for 15 years working

with this same population, how was it possible for me to have a

primary CMV infection during pregnancy? " He flat out told me he

didnt know and that it was unlikely, but here we are.....

Hope that helps answer your questions.

Sue

> > Hi everyone my name is . My 2 1/2 year old son Caleb was

> > diagnosed with PMG when he was 11 months old after his first

> > seizure. He is a happy little boy with a contagious smile. We go

> to

> > all the pt, ot, speech appts. We are working very hard on the

> gait

> > trainer he is so cute he goes backwards. but hey he is going.

I

> > have been reading posts for a while. You guys seem like a

> > wonderful group of parents. We are so excited we found out the

> info

> > about Dr. Dobbyns. Has anyone been to see him and what did you

> > think.? What do you have to prepare for an appt.?

> > I also was wondering if other children have been on Trileptal

> for

> > seizures. Caleb has been on it for 1 1/2 years now. It is

going

> > good except that he has not gained hardly any weight and we are

> > wondering if maybe that has something to do with it. The docs

say

> > not likely but still I wonder. They are very concerned about

his

> > weight. They are talking about a feeding tube and i would hate

to

> do

> > it only to find out later it is from his meds. Any info would be

> > great. Also his neuro is considering Depakote. Any experiences

> with

> > that.

> > Now I have one other question on a happy note. We live in

> oregon

> > any one out there in the north west.

> >

> > , Caleb (pmg)2 1/2, D.J.7yrs old

>

>

>

>

>

[Guest guest]

Serina,

I am a part-time caretaker of my little granddaughter Lindsey who is now 3

years old. I have read several times her MRI report which was done at 1

year old. I noticed some similiarities to 's son as well as

. Mostly the Bilaterial Temporal Frontal Pariatal as well as the

microcephaly. Lindsey's MRI report did not state whether it was caused by

the virus you speak of. Probably because the appropriate testing wasn't

done. I was wondering if your report was any more specific concerning the

white matter issue? Lindsey's report did touch on the white matter issue.

Did yours say " diffuse " or " too many folds " ? Lindsey doesn't walk or crawl

but sits with a little support on the floor. She can sit longer in a chair.

Every once in a while she'll topple over. I caught her 5 year old sister

trying to pull her over by her pony tail. Dear me! I had to take

charge and explain it hurts. I'm sure Lindsey's sister knew that but

wants so badly a reaction from her. She's usually extremely caring and

loving to Lindsey. Lindsey doesn't talk. She shakes her head " no " but not

" yes " so it's just a process of elimination most of the time. She expresses

her wants and needs by pointing. We don't know if she will talk. She has

trouble with her fine motor skills because her hands are somewhat contorted

outward. This though has gotten much better in the last year with OT.

She's usually very happy and aware of absolutely everything that is going

on around her. She wants so badly to do the same things her sister is

doing. She takes about 5 bottles of Pediasure daily. When my daughter is

home she'll eat some applesauce, mashed potatoes or baby food but refuses to

eat for me. I anticipate a feeding tube in the future but who knows.

Lindsey weighs about 28 pounds. She is a beautiful little girl with long

dark hair and big blue eyes. She is, to say the least, so very loved by our

entire family. I never thought a child who could do so little could bring

so much entertainment and happiness to our lives. The big problem now is

that she has not been sleeping through the night for the past 2 weeks. I

don't know what's going on. The PT mentioned a sleep study. Said maybe

sleep apnea because of large adnoids. I am so grateful to have this site.

You are all a bunch of wonderful parents. It warms my heart to see how

helpful this site is for all of the parents. I wish my daughter would

participate but for whatever reason she doesn't. I don't post often but am

often lurking around and reading all the helpful information.

Blessings,

Bonnie, grandmother to Lindsey 3 years old

Re: Re: some questions about Dr. Dobbyns

> Ruth,

>

> My name is Serina McCoy and my daughter (16 months) has the same

diagnosis. Bilaterial Temporal Frontal Pariatal (sp) PMG and microcephaly

caused by a CMV infection. She had a blood test done to test for CMV

becuase of the small head. The blood test showed positive cmv antibodies

conclusive with a current infection. It was done a day or two after birth.

I was also told by the doctors in Boston (Walsh and Chang) that the pattern

of the white matter on her MRI was consistant with that of a CMV infection.

Liz is also 65% deaf in one ear due to the CMV infection. Hope that helps.

>

> Serina (mom to Liz, 16 months)

>

> Ruth wrote:

> Sue, just curious, how did they determine that it was CMV that caused the

PMG? Was there a test or was it their " best guess " . I too was told that

CMV caused my daughters PMG but they never really said how they cam to that

conclusion.

>

> Thanks

> Ruth (mom to Brit, 13)

>

> ryansmom0801 wrote:

> Hi ,

>

> My son recently turned 4 and has bilateral fronto-parietal PMG

> and microcephaly. We too, had our diagnosis of PMG at a very early

> age. 's first MRI was at 3 months and we found out about it

> then. The geneticist never accepted PMG as a final diagnosis, so we

> didnt either and spent countless hours doing every genetic and

> metabolic test she could dream up. We finally gave up and decided to

> concentrate on 's delays with PT, OT and ST, rather than the

> cause of them.

>

> We just saw Dr Dobyns and Dr Chang(from Dr Walsh's Harvard study) in

> July and because of that visit, we finally have the cause. Turns out

> 's PMG is related to a CMV infection I unknowingly had while

> pregnant. That alone was worth the trip (although it doesnt change

> anything). The only thing you need to bring with you is your son's

> MRI films. I feel I must warn you to prepare yourself to hear things

> you might find unpleasant. I asked every question I had ever wanted

> to ask, but got a few answers I didnt like.

>

> is a very happy child. He walks in a gait trainer, rolls and

> commando crawls everywhere, sits with minimal support for hours, but

> less than a minute unsupported. He says " no " occasionally and can

> shake his head " yes " and " no " appropriately. He can remove and

> replace a knobbed puzzle piece, turn the page of a cardboard backed

> book while I read to him, turn his switch and some battery operated

> toys on and off, etc etc . He doesnt miss a thing and we know, he's

> got a lot more going on inside than he can express. He eats a pureed

> diet but can chew and swallow some softer whole foods. We also had

> weight problems until, on the GI Drs advice, we supplemented 2 cups

> of milk for 2 cans of Pediasure with fiber daily. He went from the

> 5th percentile in weight to the 75th and now weighs 35 lbs and is 40

> inches tall.

>

> Drs Dobyns and Chang asked for this kind of background info during

> our visit, yet they still told me things like " he will likely walk,

> but walking will probably not be his primary means of

> transportation " and " he may say a few words, but I dont know how

> extensive his vocabulary will be " I had asked them if he would be

> mentally retarded and they told me " he is mentally retarded " to

> which I filled up with tears, and then they explained that the

> severity may be as little as some mild learning disorders. Dr Dobyns

> also told me that had he seen 's scans first before meeting him,

> he would expect to see a much more severly affected child. When I

> relayed this to 's pediatrician when we got back, he said " see

> he's already exceeding their expectations, the brain is the final

> frontier, there are no absolutes " .

>

> All in all I am glad we went and if your son's PMG is genetic in

> nature, Dr Dobyns will probably admit him to his research study if

> you're willing. I just wanted you to be prepared. He is very nice,

> and none of what he told me was said without empathy, but warm and

> fuzzy, he is not.

>

> Good luck.

>

> Sue

>

>

> > Hi everyone my name is . My 2 1/2 year old son Caleb was

> > diagnosed with PMG when he was 11 months old after his first

> > seizure. He is a happy little boy with a contagious smile. We go

> to

> > all the pt, ot, speech appts. We are working very hard on the

> gait

> > trainer he is so cute he goes backwards. but hey he is going. I

> > have been reading posts for a while. You guys seem like a

> > wonderful group of parents. We are so excited we found out the

> info

> > about Dr. Dobbyns. Has anyone been to see him and what did you

> > think.? What do you have to prepare for an appt.?

> > I also was wondering if other children have been on Trileptal

> for

> > seizures. Caleb has been on it for 1 1/2 years now. It is going

> > good except that he has not gained hardly any weight and we are

> > wondering if maybe that has something to do with it. The docs say

> > not likely but still I wonder. They are very concerned about his

> > weight. They are talking about a feeding tube and i would hate to

> do

> > it only to find out later it is from his meds. Any info would be

> > great. Also his neuro is considering Depakote. Any experiences

> with

> > that.

> > Now I have one other question on a happy note. We live in

> oregon

> > any one out there in the north west.

> >

> > , Caleb (pmg)2 1/2, D.J.7yrs old

>

>

>

>

>

[Guest guest]

Hi,

My name is Karla and my daughter Sidney has PMG. I was wondering what CMV

infection is? I had a infection with Sid when I was 4 months pregnant with her.

The Doctor said that it would not harm the baby, but when we wente to Childrens

Hospital the doctor said it could of harmed the baby. It seems to me that the

doctor's in the U.S.A no more about PMG. If you could let me no what CMV stands

for that would be great.

[Guest guest]

HI,

Your posting reminds me of my daughter Sidney. She is 6 years old now and is

still progresing. She has started bum scouting around the house.She is just like

a little sister she always wants to be in her big sister's room. Sid does not

talk ,but does shack her head no, but not for yes. She has said a couple of

words.

Give your daughter time about the group. I had seen the site before but it took

me time to write the first email. I still have a hard time talk to my friends

about it. The storys about other children can give you hope, but at times can

take your hope and she is most likly scared at what she will find out. I hope to

hear more about Linsey.

Karla

[Guest guest]

Hi Karla,

CMV stands for Cytomegalovirus. 80% of adults have antibodies to it in their

blood. In most cases it produces no symptoms. However " a pregnant woman can

transmit the virus to her unborn child which can cause malformations and damage

in the child " . I found a lot of info on the internet about it. Hope this

helps--

Ruth (mom to Brit, 13)

kburns@... wrote:

Hi,

My name is Karla and my daughter Sidney has PMG. I was wondering what CMV

infection is? I had a infection with Sid when I was 4 months pregnant with her.

The Doctor said that it would not harm the baby, but when we wente to Childrens

Hospital the doctor said it could of harmed the baby. It seems to me that the

doctor's in the U.S.A no more about PMG. If you could let me no what CMV stands

for that would be great.

[Guest guest]

Hi Ruth. Thankyou for the explanation of CMV. I was also wondering what it

meant. I read the reports on the net. One thing got my attention.

Chicken Pox. When I was 7 1/2 months pregnant with Kym (she was diagnosed

with Ohtahara syndrome and last year was also diagnosed with PMG)

my other 5 children all had chicken pox over a period of 4 weeks. Would

this have had something to do with Kym being the was she is.

It is very interesting and I will be asking a few questions to the neuro

when I see him next.

I also have an other question. Does this virus stay dormant in your body

and can one still be tested to see if one has had this virus.

Thanks in advance for any input.

janice

Mother to Kym now 12 1/2 yrs.

Re: Re: some questions about Dr. Dobbyns

Hi Karla,

CMV stands for Cytomegalovirus. 80% of adults have antibodies to it in

their blood. In most cases it produces no symptoms. However " a pregnant

woman can transmit the virus to her unborn child which can cause

malformations and damage in the child " . I found a lot of info on the

internet about it. Hope this helps--

Ruth (mom to Brit, 13)

kburns@... wrote:

Hi,

My name is Karla and my daughter Sidney has PMG. I was wondering what CMV

infection is? I had a infection with Sid when I was 4 months pregnant with

her. The Doctor said that it would not harm the baby, but when we wente to

Childrens Hospital the doctor said it could of harmed the baby. It seems to

me that the doctor's in the U.S.A no more about PMG. If you could let me no

what CMV stands for that would be great.