CMV/testing

[Guest guest]

There have been some recent, major articles out about CMV and hearing loss. And

basically, it is turning current understanding somewhat upside down. So I

think it is really true that " they just don't know " ! At least at this point in

time. But they are working on being able to use the newborn blood spot test to

look for CMV in newborns without symptoms so they can follow them more closely.

One article said that when they looked at older kids, about 25% of hearing loss

was due to CMV. As I'm reading the articles, I think that may be a possibility

for the causation for Maggie's fluctuating loss. Of course, we will never know

since she was nearly 4 years old at diagnosis.

Re: Digest Number 3034

>

>Thanks Sharon,

>

> I was also told that her loss should stabalize around 3. But now the more we

are getting into it the more they are saying " well we just don't know " . Which

is understandable.

>

> I don't really have the desire to " fix " her HL. I don't want that the me a

misconception. It is just frustrating that I know there are tests that can

alteast attempt to determine a reason and those tests weren't done by my ENT. I

would definitely opt out of the steroids also. I'm suppose to use steroids

periodically for my asthma but never do. I may end up in the ER a few more

times but man...those steroids scare me.

>

>

>

>Sidarbireland@... wrote:

>

>Sara,

> The first ENT I took Darby to after it was determined her loss was

>progressive had basicly the same response, there was nothing to be done. We

knew the

>reason for her loss, (CMV), but at that point there was still debate if the

>hearing loss would continue to progress, I was originally told that there would

>be no further loss after the age of two, she's 15 now and still loosing more

>hearing. I finally took her to Boston Childrens where they had lots of

>experience with CMV and progressive hearing loss in children, she was tested

for an

>autoimmune response of her inner ear and the use of steroids was discussed, I

>opted against the use but I was glad I was given the option with lots of

>information.

> Sharon

>

>

>

>All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

>

>

>

>

[Guest guest]

Hi,

I¹m one of the newer quiet members who learns a lot but doesn¹t have much

experience to throw in so never says much! My 9 month old was born with

congenital CMV and had a profound loss at birth. I¹ve been blown away by how

little any of the doctors know about this disease and have had a hard time

locating any recent information online. Could you point me to some articles

you¹ve found? One question I¹ve been thinking about is the shedding of the

virus. I¹m wondering if he should avoid the baby pool this summer for

instance?

Right now we¹re dealing with acid reflux a go-go and he has some severe

symptoms such as apnea to contend with. The hearing loss is sometimes the

farthest thing from my mind, so if there is anyone else on the list that has

a CMV child with similar issues, I¹d love to hear from you (off list of

course).

Thanks,

in Ohio

(Athens, close to W.Va. Barbara!)

>

> There have been some recent, major articles out about CMV and hearing loss.

> And basically, it is turning current understanding somewhat upside down. So

> I think it is really true that " they just don't know " ! At least at this point

> in time. But they are working on being able to use the newborn blood spot

> test to look for CMV in newborns without symptoms so they can follow them more

> closely. One article said that when they looked at older kids, about 25% of

> hearing loss was due to CMV. As I'm reading the articles, I think that may be

> a possibility for the causation for Maggie's fluctuating loss. Of course, we

> will never know since she was nearly 4 years old at diagnosis.

>

[Guest guest]

Have you tried the CMV support group the web is http://www.cmvkids.faithweb.com

I have a 6 year old son that I adopted and he has CMV and also many other issues

too. If you would like to chat my email is strat@....

Michele

Re: CMV/testing

Hi,

I¹m one of the newer quiet members who learns a lot but doesn¹t have much

experience to throw in so never says much! My 9 month old was born with

congenital CMV and had a profound loss at birth. I¹ve been blown away by how

little any of the doctors know about this disease and have had a hard time

locating any recent information online. Could you point me to some articles

you¹ve found? One question I¹ve been thinking about is the shedding of the

virus. I¹m wondering if he should avoid the baby pool this summer for

instance?

Right now we¹re dealing with acid reflux a go-go and he has some severe

symptoms such as apnea to contend with. The hearing loss is sometimes the

farthest thing from my mind, so if there is anyone else on the list that has

a CMV child with similar issues, I¹d love to hear from you (off list of

course).

Thanks,

in Ohio

(Athens, close to W.Va. Barbara!)

>

> There have been some recent, major articles out about CMV and hearing loss.

> And basically, it is turning current understanding somewhat upside down.

So

> I think it is really true that " they just don't know " ! At least at this

point

> in time. But they are working on being able to use the newborn blood spot

> test to look for CMV in newborns without symptoms so they can follow them

more

> closely. One article said that when they looked at older kids, about 25%

of

> hearing loss was due to CMV. As I'm reading the articles, I think that may

be

> a possibility for the causation for Maggie's fluctuating loss. Of course,

we

> will never know since she was nearly 4 years old at diagnosis.

>

[Guest guest]

MIchelle, one of the articles did talk about shedding virus. I'll check it out

tonight and tell you some more details. From looking at the articles, it looks

like Birmingham AL and Bologna/Milan Italy are the hotbeds of CMV research.

Re: CMV/testing

>

>Have you tried the CMV support group the web is

http://www.cmvkids.faithweb.com I have a 6 year old son that I adopted and he

has CMV and also many other issues too. If you would like to chat my email is

strat@....

>

>Michele

>

> Re: CMV/testing

>

>

> Hi,

>

> I¹m one of the newer quiet members who learns a lot but doesn¹t have much

> experience to throw in so never says much! My 9 month old was born with

> congenital CMV and had a profound loss at birth. I¹ve been blown away by how

> little any of the doctors know about this disease and have had a hard time

> locating any recent information online. Could you point me to some articles

> you¹ve found? One question I¹ve been thinking about is the shedding of the

> virus. I¹m wondering if he should avoid the baby pool this summer for

> instance?

>

> Right now we¹re dealing with acid reflux a go-go and he has some severe

> symptoms such as apnea to contend with. The hearing loss is sometimes the

> farthest thing from my mind, so if there is anyone else on the list that has

> a CMV child with similar issues, I¹d love to hear from you (off list of

> course).

>

> Thanks,

> in Ohio

> (Athens, close to W.Va. Barbara!)

> >

> > There have been some recent, major articles out about CMV and hearing loss.

> > And basically, it is turning current understanding somewhat upside down.

So

> > I think it is really true that " they just don't know " ! At least at this

point

> > in time. But they are working on being able to use the newborn blood spot

> > test to look for CMV in newborns without symptoms so they can follow them

more

> > closely. One article said that when they looked at older kids, about 25%

of

> > hearing loss was due to CMV. As I'm reading the articles, I think that may

be

> > a possibility for the causation for Maggie's fluctuating loss. Of course,

we

> > will never know since she was nearly 4 years old at diagnosis.

> >

>

>

>

>

[Guest guest]

Hi ,

My daughter was diagnosed with moderately-severe bi-lateral SNHL at age 9

months. She went through the newborn screening at birth and was referred for

her right ear only. After 2 ABRs and seeing 2 Pediatric ENT specialists we

were told that she had a mild loss in her right ear only and it was probably

due to fluid and to follow-up with an ABR 6-9 months later.

Our daughter was meeting the milestones in her early months, however, we

still wanted to follow-up to be sure there was no issue. At 9 months we

repeated an ABR to find out that her right ear had progressed to a

mod-severe loss and her left ear (was normal at birth) was severe. She had a

rapid & progressive loss.

My husband & I were extremely anxious to learn of the cause and did genetic

testing that was available to us, all tests were negative. My brother is a

physician and encouraged us to get our daughter tested for CMV (a simple

urine test). We tested her for the CMV titers and she was positive.

Furthermore, when they sample the urine for CMV, they place the urine in a

petri dish to see if the cells grow....well, within 24 hours the cells

enumerated. We had been advised by a leading Infectious Disease specialist

that CMV can only be fully diagnosed within the first 3 weeks of a child's

birth, however, given the progressive hearing loss,(CMV is the leading cause

of progressive loss), her low birth weight (she was 5.3 lbs and I was

full-term) and the numerous cells that showed up, the physician felt that

our daughter's isolated hearing loss was due to CMV.

I am very fortunate to have my brother in the medical field, he led the

search for the diagnosis as well as spoke to several Infectious Disease

Specialists to better understand CMV and hearing loss, most importantly, if

it could be treated. It seems that Birmingham, Alabama is a doing a lot

research and trials with children who have CMV and hearing loss. Our ID

physician spoke with the the lead investigators of these trials to

understand treatment options. There is an article that discusses a small

trial of about 12 children (ages 9 months - 11 years) with CMV and hearing

loss where the children were treated with an antiviral therapy for one -two

years. 5 of the children had improvement in hearing loss and 2 had reverse

hearing & remaining children had stable loss for these years of follow-up to

date(this is a quick summary and would be happy to send the article to you

via fax).

To make a long story short, we made the decision to treat our daughter with

an anti-viral drug for one year. To be very clear, this was a concious &

emotional decision that our family made with the support of our medical

team. To date, many physicians will disagree with this choice, but, it was

our decision, and for us, it made sense...we wanted to know we did whatever

we could in this fight to help our daugther. We were not expected

improvement (of course Miracles can occur) but were hoping for stabilization

of her loss with treatment.

The drug has only been out for 10 years and therefore longterm side effects

have not been fully determined. As a medical professional myself

(Pharmacist) it was a very hard decision for us and not one to be taken

lightly. After a year of treatment, we do believe that her left ear improved

slightly. Thus far, her hearinghas been stable. She will be 3 in August.

I have many hard copy articles that I would be happy to share with you.

Please let me know a fax number and I can send to you. If you do not have a

fax, I can get the references for you and you can probably have a medical

professional get them for you.

Hope this helps,

Sandi

>

>Reply-To: Listen-Up

>To: Listen-Up >

>Subject: Re: CMV/testing

>Date: Mon, 22 May 2006 11:03:27 -0400

>

>Hi,

>

>I¹m one of the newer quiet members who learns a lot but doesn¹t have much

>experience to throw in so never says much! My 9 month old was born with

>congenital CMV and had a profound loss at birth. I¹ve been blown away by

>how

>little any of the doctors know about this disease and have had a hard time

>locating any recent information online. Could you point me to some

>articles

>you¹ve found? One question I¹ve been thinking about is the shedding of the

>virus. I¹m wondering if he should avoid the baby pool this summer for

>instance?

>

>Right now we¹re dealing with acid reflux a go-go and he has some severe

>symptoms such as apnea to contend with. The hearing loss is sometimes the

>farthest thing from my mind, so if there is anyone else on the list that

>has

>a CMV child with similar issues, I¹d love to hear from you (off list of

>course).

>

>Thanks,

> in Ohio

>(Athens, close to W.Va. Barbara!)

> >

> > There have been some recent, major articles out about CMV and hearing

>loss.

> > And basically, it is turning current understanding somewhat upside

>down. So

> > I think it is really true that " they just don't know " ! At least at this

>point

> > in time. But they are working on being able to use the newborn blood

>spot

> > test to look for CMV in newborns without symptoms so they can follow

>them more

> > closely. One article said that when they looked at older kids, about

>25% of

> > hearing loss was due to CMV. As I'm reading the articles, I think that

>may be

> > a possibility for the causation for Maggie's fluctuating loss. Of

>course, we

> > will never know since she was nearly 4 years old at diagnosis.

> >

>

>

>

>

[Guest guest]

Thanks Michele, I¹m going to join that listserv asap. I¹ve been searching

for one and I guess the 2 hours of sleep I get per night just hasn¹t been

enough fuel for the ride that is researching on the web :-)

To answer Robin¹s question about how we found out the CMV diagnosis: They

say you can only get a true diagnosis within the first few days or weeks of

a baby¹s life, but there were plenty of clues that led to this diagnosis for

our son. His birth weight was only 4 pounds at full term, the amniotic fluid

level was extremely low, he failed the newborn hearing screening, etc. What

led to the actual diagnosis was the CAT Scan done by the ENT. It showed

intracranial calcifications which led him to do a urine test. The urine test

sort of sealed the deal so to speak. We wouldn¹t have found out had there

not been a CAT Scan to get the ball rolling though. My husband and I tested

negatively for the genetic component, so we feel confident in the accuracy

of the diagnosis. I have no idea when I caught the virus, but I was teaching

7th grade while I was pregnant, so it¹s very likely that I caught it at

school somehow. It¹s amazing to me that I made it to the age of 34 without

having ever caught the thing, then my body decides to pick it up while I¹m

pregnant. Oh well :-(

-

> Have you tried the CMV support group the web is

> http://www.cmvkids.faithweb.com I have a 6 year old son that I adopted and he

> has CMV and also many other issues too. If you would like to chat my email is

> strat@....

>

> Michele

[Guest guest]

Hmmm...I was teaching 7th grade at the time, too. I remember one student

coming back from an absence and telling me she had had something and her mom

didn't want her around me. Can't for the life of me remember what it was,

though. All I can remember is a girl in my homeroom having Fifth Disease,

but that was during my other pregnancy.

Sydney was 6 lbs. 15 oz. which I thought a little odd since her brother was

8 lbs. 10 oz.

She failed her newborn hearing screen in her L ear, twice.

Other than those similarities, I have no reason to suspect CMV.

>

> Thanks Michele, I¹m going to join that listserv asap. I¹ve been searching

> for one and I guess the 2 hours of sleep I get per night just hasn¹t been

> enough fuel for the ride that is researching on the web :-)

>

> To answer Robin¹s question about how we found out the CMV diagnosis: They

> say you can only get a true diagnosis within the first few days or weeks

> of

> a baby¹s life, but there were plenty of clues that led to this diagnosis

> for

> our son. His birth weight was only 4 pounds at full term, the amniotic

> fluid

> level was extremely low, he failed the newborn hearing screening, etc.

> What

> led to the actual diagnosis was the CAT Scan done by the ENT. It showed

> intracranial calcifications which led him to do a urine test. The urine

> test

> sort of sealed the deal so to speak. We wouldn¹t have found out had there

> not been a CAT Scan to get the ball rolling though. My husband and I

> tested

> negatively for the genetic component, so we feel confident in the accuracy

> of the diagnosis. I have no idea when I caught the virus, but I was

> teaching

> 7th grade while I was pregnant, so it¹s very likely that I caught it at

> school somehow. It¹s amazing to me that I made it to the age of 34 without

> having ever caught the thing, then my body decides to pick it up while I¹m

> pregnant. Oh well :-(

>

> -

>

>

>

>

> > Have you tried the CMV support group the web is

> > http://www.cmvkids.faithweb.com I have a 6 year old son that I adopted

> and he

> > has CMV and also many other issues too. If you would like to chat my

> email is

> > strat@....

> >

> > Michele

>

>

>

>

>

[Guest guest]

Hi I am a member in britain. My daughter was diagnosed in a very round about

way. We moved fron scotland to england when she was 3 1/2 and got a hospital

in London for her implant care. When we spoke to the consultant there she

asked if cmv had been ruled out - i didn't even know what it was.

she then tried to get all her notes from scotland. It was then that we

discovered that cmv had never been considered but her guthrie test( heel prick)

when it was taken i had given consent for an extra spot to be taken for research

and one of the research tests was cmv and showed high exposure. However

because it was research we couldn't use it for diagnosis . Great ormond street

hospital in London were able to recover the original guthrie card and extract

the dna from it abd retest it hence she was diagnosed at 5!!!!

has a profound loss probably from birth, mild microcephaly, babd

eyesight, truncal ataxia, and verbal dyspraxia. I had a bad cold at 11 weeks in

the pregnancy and she was a small borth weight compared to my other children

but she was the first so we couldnt compare then.

hope this helps

Mandy