cmv..its rare has anyone heard of it??

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EmmAJanExx
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Posted: Wed Jan 02, 2008 11:08 pm 
Post subject: cmv..its rare has anyone heard of it??
hello.my name is emma ..and i would like to ask if anybody has heard of cmv?? my son who is now 1 was born with it and was very poorly..it is very rare !! Sad ..has anybody else heard of it???
mrswolfbane
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Posted: Wed Jan 02, 2008 11:27 pm 
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i dont know what the abbrevation cmv stands for so i wudnt know sorry maybe if u wrote so its was an abbreveation it wud help xx
mrswolfbane
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Posted: Wed Jan 02, 2008 11:48 pm 
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i googled cmv and also asked a nurse friend of mine and she said this is all she can think cmv is to her knowledge.il paste what i found here i hope it helps it may not do as it maybe something different but when i typed cmv this is what came up and the nurse agreed.

Pregnancy and cytomegalovirus (CMV)
Cytomegalovirus (CMV) is a common viral infection of the herpes family (the virus that causes cold sores and genital herpes). It is passed on through blood, saliva, breast milk, and other bodily fluids. Between 40-85% of people get infected with CMV during their lifetime, but most do not have any symptoms.

Once you have been infected with CMV, you carry the virus in your body, and can pass it on to others. However, the virus usually only reactivates in people who have problems with their immune system. If you are pregnant, CMV can be passed to the baby through the placenta. The baby can also get the infection at birth, or from breastfeeding.

However, CMV is only really dangerous to your baby if you catch it for the first time during pregnancy. On average, there is a 40% chance that you will pass the virus on to your baby. Approximately 1 in 10 unborn babies who catch CMV from their mother develop serious problems as a result (about 300 a year).

If you are infected with CMV during the early stages of pregnancy, it can cause miscarriage or damage to the baby, resulting in problems such as hearing or visual impairment. If you get CMV later in pregnancy, it can cause stillbirth or an early (premature) labour. The baby may be born with congenital CMV and may have jaundice (yellowing of the skin), problems with the liver and blood, or hearing, visual and learning difficulties.

If you have already had the CMV virus and have the antibodies (disease-fighting cells) it is unlikely you will pass it on to your baby. If you have come into contact with CMV during pregnancy or you are showing any of the symptoms, you should see your GP or call NHS Direct on 0845 4647. If you are pregnant and unsure whether you have previously had CMV, you can have a blood test to find out if you have got the CMV antibodies. However, this is not a routine part of the screening programme during pregnancy because there is no immunisation or simple treatment for it.

It is also very rare for healthy adults to get CMV, but you should always ensure high standards of hygiene nonetheless. Wash your hands thoroughly, particularly after coming into contact with nappies or the saliva of other children.
EmmAJanExx
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Posted: Thu Jan 03, 2008 4:03 pm 
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mrswolfbane wrote:
i googled cmv and also asked a nurse friend of mine and she said this is all she can think cmv is to her knowledge.il paste what i found here i hope it helps it may not do as it maybe something different but when i typed cmv this is what came up and the nurse agreed.

Pregnancy and cytomegalovirus (CMV)
Cytomegalovirus (CMV) is a common viral infection of the herpes family (the virus that causes cold sores and genital herpes). It is passed on through blood, saliva, breast milk, and other bodily fluids. Between 40-85% of people get infected with CMV during their lifetime, but most do not have any symptoms.

Once you have been infected with CMV, you carry the virus in your body, and can pass it on to others. However, the virus usually only reactivates in people who have problems with their immune system. If you are pregnant, CMV can be passed to the baby through the placenta. The baby can also get the infection at birth, or from breastfeeding.

However, CMV is only really dangerous to your baby if you catch it for the first time during pregnancy. On average, there is a 40% chance that you will pass the virus on to your baby. Approximately 1 in 10 unborn babies who catch CMV from their mother develop serious problems as a result (about 300 a year).

If you are infected with CMV during the early stages of pregnancy, it can cause miscarriage or damage to the baby, resulting in problems such as hearing or visual impairment. If you get CMV later in pregnancy, it can cause stillbirth or an early (premature) labour. The baby may be born with congenital CMV and may have jaundice (yellowing of the skin), problems with the liver and blood, or hearing, visual and learning difficulties.

If you have already had the CMV virus and have the antibodies (disease-fighting cells) it is unlikely you will pass it on to your baby. If you have come into contact with CMV during pregnancy or you are showing any of the symptoms, you should see your GP or call NHS Direct on 0845 4647. If you are pregnant and unsure whether you have previously had CMV, you can have a blood test to find out if you have got the CMV antibodies. However, this is not a routine part of the screening programme during pregnancy because there is no immunisation or simple treatment for it.

It is also very rare for healthy adults to get CMV, but you should always ensure high standards of hygiene nonetheless. Wash your hands thoroughly, particularly after coming into contact with nappies or the saliva of other children.
hi there ...thanks for replying and taking your time to read up about it??my son was ok at birth and for 24 hours after ..he had a lot of pressure on his face which was a sign that something was wrong but the peaditritions said he was fine !!but i persistantly told them to check him over again and thats how they found the virus..i know alot about the virus!!and i was asked if i had herpes or coldsores !!which i have never had!! we now think i must of picked it up through my job as i work with children and baies..but i did have it already and it reactivated during pregnancy as i was unwell with a sore throat!!i was just wondering if anybody else had come across this before ?so we can have chat and support each other!!
mrswolfbane
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Posted: Thu Jan 03, 2008 5:59 pm 
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have u looked for support groups?

i have a child with nf1 and not many ppl have ever heard of it or thinks its the elephant mans disease the elephant man is thought to have had proteus which is confused with nf1 and 2 bcuz its closely lionked
EmmAJanExx
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Posted: Thu Jan 03, 2008 8:13 pm 
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mrswolfbane wrote:
have u looked for support groups?

i have a child with nf1 and not many ppl have ever heard of it or thinks its the elephant mans disease the elephant man is thought to have had proteus which is confused with nf1 and 2 bcuz its closely lionked
I havnt looked at any support before as i didnt really want to accept that he had this illness!!he acts so normally and has developed normally so far!!i didnt want to seek any other info before as i think it would of frightened me!!i find it very emotional and difficult to accept sometimes..i had always wanted lotrs of children and suffured so much with getting them..its just alot to cope with when its unexpected and they told me he would be blind deaf and dumb!!so we are consistantly on tenterhooks waitng for theses things to happen..thankyou for spending time to read on!!HOW DO YOU COPE AND GET THROUGH THE HARD TIMES??
mrswolfbane
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Posted: Thu Jan 03, 2008 8:26 pm 
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well with my daughter its wait and see what happens worst case scenria she could die or she cud be disfigured BUT i look at the here and now.
right now shes doing things docs sed she wudnt do till she was older and she shows no signs of massive learning difficulties.she is over friendly and loud but thats nothing really.
sometimes i think omg she so beautiful and she might turn out to be a monster in other ppl eyes and that worries me but i squash the thoughts.
i think positively now all the time.

i did go through a stage where i jst cudnt cope with the thoughts i was having but i got over that by not looking at horror stories and looking at others with it and talking to other kids and young adults with and seeing it doesnt effect every one the same
EmmAJanExx
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Posted: Thu Jan 03, 2008 8:39 pm 
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i admire you for how you seem to cope ..i think we have been lucky with my son as he could be so much worse..he does do little things that make me worry ..like he shakes his head as though he is stressed or angry.he does it quite often..but some have said it can be normal!!i think we are just looking to hard to find something wrong!!we have been told that we wont be able to see how much damage is done till he is 4 or 5..he also had two grade 2 bleeds when he was born aswell..so thats another worry..pleas keep writing in as you seem to give me strengh and courage to live with watever comes my way x
mrswolfbane
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Posted: Thu Jan 03, 2008 8:57 pm 
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awww ty u should look at a support group and try not to look for things that may not be there.
i do it with my daughter and stop myself bcuz i wud instantly know if she had tumour.
i told ppl something wasnt right as soon as she was born but i wasnt believed she was finally diagnosed after going to a hospital for somethin totally unrelated.
i wasnt angry i was jst glad i was not paranoid as her illness leaves brown marks called cafe au lait spots on her and freckles on her groin armpits and neck which are not normal for freckles lol.
EmmAJanExx
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Posted: Thu Jan 03, 2008 9:46 pm 
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i will look for a support group soon!!how old is your daughter now?? i also have a 8 year old daughter!!who is happy and healthy..and hopefully my little one will be too!!do you go to or speak to people with the same condition!!i think i might not find one with my sons illness!!
mrswolfbane
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Posted: Thu Jan 03, 2008 10:05 pm 
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my girl is 3 will be 4 this year my son is almost 5 he doesnt show ne signs of it

i had a look for u because it can be dodgy looking for support websites as u may get unsuitable ones these are good ones i found that when ur ready u may like to look at

http://mysite.wanadoo-members.co.uk/CMVsupport this one the person who made it has a son with cmv called sam.the person is based in devon so its a uk site.

http://www.makingcontact.org/index.php?ci=453 im not sure how useful this is.this is helping plp with disabled children make contact as u will see some children have cmv and some have other conditions.

http://www.cmvsupport.org/modules/news/ About Us
Established in 1986, the UK Congential CMV association offers advice, support and family matching to anyone affected by cCMV

i hope some of this helps u when ur ready
EmmAJanExx
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Posted: Sun Jan 06, 2008 9:54 pm 
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hi ..ithought i would let you know that i looked at one of the sites you put on here and i have sighned up to it and spoke to someone else that has been in my position..and she was very helpful..thankyou again for taking time to help xxx
mrswolfbane
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Posted: Sun Jan 06, 2008 11:17 pm 
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no worries huny dont forget to ask ur gp or specialist for local support groups and i hope everything works out good for u xx
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