CMV - my story. support group / raise awareness

[*Twinkle*]

Thank you for sharing your story with us Nicole. My Dad is one of the few adults where CMV has reared its ugly head and caused MASSIVE health problems. He will never recover. Starting some awareness and a foundation is a fantastic idea hun and I for one back you all the way.xo

[lozzy_mac]

Hi Nicole
So sorry to hear about your son but so much respect for how you are nuturing him and are committed to raising awareness

Theres a guy doing CMV research at westmead millenium institute- not specificially into contraction during pregnancy, more to do with how it stays dormant in the body after you contract it. (He's part of the same faculty as me at USyd)
However, he probably knows all about the research thats being done around the world and could help put you in touch with the right person.

http://sydney.edu.au/medicine/people...les/barrys.php

Academics are notoriously bad at replying to emails from the general public. Keep your message short and concise, and if you dont get a reply within a week or so, try contacting WMI directly (if they think you might want to fundraise for them they should get back to you very quickly!!)

Wishing you all the best for you and your son and your cause!

[Nicole]

Thought i'd continue and update this post.

My son is now 2.

When my son was born 2 weeks early, weighing 6pound 13ounces. he was not breathing, after resuscitating the noticed he had an enlarged spleen and low platelet count. This of which was CMV. He was taken to the neo-natal ward and extensive tests were done. My son looked like a pin cushion. After 6 hours I actually got to meet my son (I had a brief 2 seconds to see him before they rushed him off).

For the next 24 hours he was kept in NCIU and was monitored closely. He was then released and I was allowed to have him in my room permanently. We then had trouble attaching for breast feeding and after 3 days a nurse finally listened to me after his weigh in and being lower then his birth weight by 20%. He was immediately put onto formula while i expressed milk and fed it to him through a syringe then finally a bottle. We were in hospital for a total of 6 days. I too had gotten very sick.

At 5 weeks we were back in hospital for failure to thrive. not putting on any weight and vomiting up most feeds from severe reflux. He was admitted into Peadiatrics and was put on a nasal gastric tube for 24 hours and then was slowly introduced back onto the bottle.

At 9 months old he started physio as he wasn't able to sit, and only started crawling properly the day after his first birthday. We began seeing physio, speech and occupational therapy fornightly until his second birthday.

Bub finally accomplished walking at 2 years and 2 months. It was later discover that he has hyper-mobility as well which had caused mixed signals to the brain on how to control the extra flexibility he has.

He turns 3 next month and over the past year we have battled with severe sensory issues which is only letting him eat vegemite sandwiches and yoghurts. specific little chocolates and the occasional nugget happy meal or chips. As a result of the reduced food groups we are now dealing with his weight as he is almost at a critical point and having to consider a peg/g-tube (a tube inserted into the stomach and fed via that tube). Fortunately we've gained 1.6kg and starting to pork up with the assistance of polyjoule. We are investigating the option of an intensive feeding program at the Royal Brisbane hospital that will hopefully help with desensitizing him with certain textures and trying to get him to explore new food.

With all these issues we are also delayed in his development of communication, and understanding simple instructions. We have learnt the basic sign language signs for food, help, more, finished. These help with his communication and frustrations.

c-Cmv (congenital Cytomeglovirus) has caused many upturns in my sons life so far, and I am in the process of trying to get a foundation up and running here in Australia to raise awareness and to educate women to be tested before trying for children.

[Smita.ThatslifeMagazine]

Hi Nicole,

I've just read your thread about your son.

I have actually just read about CMV and we're looking to spread awareness on this condition in our women's weekly magazine.

If you were interested in telling your story as part of this please contact me for more information. Email: smita.mistry@pacificmags.com.au

Hope to hear from you soon.

Kind regards,

Smita

Thought i'd continue and update this post.

My son is now 2.

When my son was born 2 weeks early, weighing 6pound 13ounces. he was not breathing, after resuscitating the noticed he had an enlarged spleen and low platelet count. This of which was CMV. He was taken to the neo-natal ward and extensive tests were done. My son looked like a pin cushion. After 6 hours I actually got to meet my son (I had a brief 2 seconds to see him before they rushed him off).

For the next 24 hours he was kept in NCIU and was monitored closely. He was then released and I was allowed to have him in my room permanently. We then had trouble attaching for breast feeding and after 3 days a nurse finally listened to me after his weigh in and being lower then his birth weight by 20%. He was immediately put onto formula while i expressed milk and fed it to him through a syringe then finally a bottle. We were in hospital for a total of 6 days. I too had gotten very sick.

At 5 weeks we were back in hospital for failure to thrive. not putting on any weight and vomiting up most feeds from severe reflux. He was admitted into Peadiatrics and was put on a nasal gastric tube for 24 hours and then was slowly introduced back onto the bottle.

At 9 months old he started physio as he wasn't able to sit, and only started crawling properly the day after his first birthday. We began seeing physio, speech and occupational therapy fornightly until his second birthday.

Bub finally accomplished walking at 2 years and 2 months. It was later discover that he has hyper-mobility as well which had caused mixed signals to the brain on how to control the extra flexibility he has.

He turns 3 next month and over the past year we have battled with severe sensory issues which is only letting him eat vegemite sandwiches and yoghurts. specific little chocolates and the occasional nugget happy meal or chips. As a result of the reduced food groups we are now dealing with his weight as he is almost at a critical point and having to consider a peg/g-tube (a tube inserted into the stomach and fed via that tube). Fortunately we've gained 1.6kg and starting to pork up with the assistance of polyjoule. We are investigating the option of an intensive feeding program at the Royal Brisbane hospital that will hopefully help with desensitizing him with certain textures and trying to get him to explore new food.

With all these issues we are also delayed in his development of communication, and understanding simple instructions. We have learnt the basic sign language signs for food, help, more, finished. These help with his communication and frustrations.

c-Cmv (congenital Cytomeglovirus) has caused many upturns in my sons life so far, and I am in the process of trying to get a foundation up and running here in Australia to raise awareness and to educate women to be tested before trying for children.

[Nicole]

I've decided to create a blog about this if you wanted to follow. My Story

[Nicole]

Well,

Marcus is 4 now. diagnosed with on the spectrum autism. We're now talking, fully toilet trained (apart from nights) and working on formulating sentances and starting to draw

[Nicole]

Well,

Marcus is 4 now. diagnosed with on the spectrum autism. We're now talking, fully toilet trained (apart from nights) and working on formulating sentances and starting to draw