More appointments...

We just returned from Edmonton today, back from a weekend of appointments, shopping and visiting. We had 2 appointments for Sienna.

1. Lung Specialist- We were told that Sienna’s airways are always constricted which means it takes a lot out of her to breathe right. This did not come too much as a surprise; thus the reason I requested an appointment with a lung specialist. Sienna is always sick. Since a young age, she seems to get a cold easily and often which usually led to bronchiolitis, vomiting when she coughed, inhalers to calm her breathing, and many trips to the hospital. While we were there, he noticed her sides were in-drawing meaning she was having hard time breathing. I could not see this, in my eyes, she did not have a runny nose nor a cough therefore she was healthy. She did get an allergy test and surprisingly she is allergic to cats, dogs, dust mites and feathers. Well now that we know her airways are fragile, we must fix it. Because of her CMV, she has poor muscle tone which he says is contributing to the constricted airways. Therefore we must continue doing exercises to strengthen her trunk tone. Second, he put her on QVAR, a corticosteroid oral inhaler and ventilin daily until she gets stronger. We will return to see him in 4 months.
   
   2-Endocrinologist (Hormone Specialist)- CMV does cause poor growth, however, our pediatrician at the Glenrose recommended that we see a hormone specialist to make sure that we are not overlooking what could be a factor in Sienna’s poor growth. So after a detailed review of Sienna’s history and our history; he came to the conclusion that Sienna’s poor weight gain is not due to her growth hormones but due to her having congenital CMV and to the fact that Kevin and I are small people. We return to see him in 6 months. According to their chart, with her weight and height of that day, she is actually gaining at a faster rate. Yeah! Let’s keep up the trend! She weighs 20lbs. 13oz..

We had a fantastic visit with my cousins, Darcy and Lisa, and our kids played, played, played. They were great hosts and took very good care of us, thank-you!

We also had a chance to visit some friends who we’ve been in touch with since May 09. A mutual friend introduced us because their daughter, Allison, just received bilateral cochlear implants last spring. Since then we’ve been in touch by phone and email so we decided to finally put a face to their friendly voices. We had a great time; it was such a pleasure to meet them and to share our stories.

Seeing that it is -40C here in northern Alberta, yes -40C, which marks the beginning of our cold winter, I am very happy that our next Edmonton appointment ( 4.5 hours away) is in mid February…. hopefully, after the brutal cold has past.

Wash your hands....STOP CMV!

As most of you know, Sienna has congenital (born with it) cytomegalovirus, CMV. While pregnant with Sienna, my doctor noticed on the ultrasound that Sienna had an enlarged ventricule in her brain. After many ultrasounds at the Royal Alex, one doctor recommended that we get a TORCH screen done once the baby arrives. This would have meant, Sienna would have immediately been diagnosed with CMV, perhaps given an antiviral which could have slowed down and maybe stopped the virus from attacking. She may not have had severe/profound hearing loss, she may not have had such great developmental and growth delays but the doctors referral was missed; all the doctors under baby Sienna's care did not see the recommendation.



After 18 months of questions, concerns and many appointments, a diagnosis came in March '09 when a dedicated and caring pediatrian at the Glenrose Rehabilitation Hospital and a persistent and knowlegable Infectious Disease Specialist at the Stollery Children's hospital worked together to give us an answer to Sienna's hearing loss and developmental and growth delays. They did a never before done test of her newborn blood (which is kept in a lab in Edmonton for the scientist not the doctors), testing for CMV, which came back positive. I have learned alot about this silent and complicated virus and I continue to learn everyday as I encouter new situations. I would like to take this time to share with you what I know about CMV. My knowledge comes mostly from the website Centre for Disease and Control and from the Infectious Disease Specialist at the Stollery Children's Hospital.

• Between 50% and 80% of adults in the United States are infected with CMV by 40 years of age


• CMV is the most common virus transmitted to a pregnant woman's unborn child


• Approximately 1 in 150 children is born with congenital CMV infection


• Approximately 1 in 750 children is born with or develops permanent disabilities due to CMV which is a 0.001% chance that it'll happen to you


• Congenital CMV (meaning present at birth) is as common a cause of serious disability as Down syndrome, fetal alcohol syndrome, and neural tube defects yet nobody knows about it


• CMV is found in body fluids, including urine, saliva (spit), breast milk, blood, tears, semen, and vaginal fluids


• Once CMV is in a person's body, it stays there for life


• Most CMV infections are "silent," meaning they cause no signs or symptoms in an infected person


• Transmission of CMV occurs from person to person, through close contact with body fluids (urine, saliva (spit), breast milk, blood, tears, semen, and vaginal fluids), but the chance of getting CMV infection from casual contact is very small.


• In the United States, about 1%-4% of uninfected mothers have primary (or first) CMV infection during a pregnancy.


• 33% of women who become infected with CMV for the first time during pregnancy pass the virus to their unborn babies.


• CMV is spread from person to person contact (such as, kissing, sexual contact, and getting saliva or urine on your hands and then touching your eyes, or the inside of your nose or mouth)


• Women who are pregnant or planning a pregnancy should follow hygienic practices (e.g., careful handwashing) to avoid CMV infection. Because young children are more likely to have CMV in their urine or saliva (spit) than are older children or adults, pregnant women who have young children or work with young children should be especially careful.


• Vaccines for preventing CMV infection are still in the research and development stage.

PREVENTING CMV DURING PREGNANCY

• Wash your hands often with soap and water for 15-20 seconds, especially after changing diapers or touching saliva or nasal secretions from a young child.


• Reduce contact with saliva and nasal secretions from young children by 1) using soap and water or a disinfectant to clean hard surfaces that have been contaminated by secretions, 2) not sharing food, drinks, or eating utensils with young children, and 3) being careful to limit kissing of young children on the lips.


• If you work in a day care center, limit close contact with children younger than 2½ years of age, especially if you've never been infected with CMV or don't know if you've been infected.

Because Sienna has congenital CMV, she carries the virus and will for the rest of her life. Most of the time the virus is "latent" (i.e. hiding in different cells of the body) and not being excreted. However, from time to time they will shed virus without any symptoms. It can be transmitted by direct contact or contact with a contaminated object, although the highest risk is with repeated direct contact.

Although the risk is extremely low, 0.001% chance, of having a baby born with CMV and permanent disabilities, it happened to me. I am very cautious when Sienna is out especially around pregnant women. This post is to educate pregnant women on the importance of hand-washing even when you are around your own children because they could also be carrying the virus.

Here are other informative links:

Congenital CMV Blog

Department of Health- New York State

Stop CMV

Please pass this message on and help me spread awareness about CMV.