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Colds, RSV and Sleep

It’s that time of year …

The kids have had a bad run the past couple of weeks with yet more chest infections and colds. The problem is always amplified by their chronic lung disease from being intubated for so long in NICU. A new born baby is defined as having chronic lung disease if they have been oxygen dependent on a ventilator for at least 28 days from birth.

When infection gets into Max and Ella’s lungs, it hits them for six, and they cough for England. In the past they’ve needed additional help with extra O2 when having a coughing fit, but they are getting stronger and stronger at being able to fight it on their own now. We’re just grateful that we finally got the go ahead last November for their Synagis shots (palivizumab) to protect against Respiratory Syncytial Virus (RSV).

RSV usually causes mild cold-like symptoms in adults and children. But it can make premature babies and children with certain other medical conditions very sick. In England, 28 per 1000 hospital admissions in children aged under 1 year are attributed to RSV each year, and in the US, about 125,000 infants are hospitalised with severe RSV infections. It is the leading cause of infant hospitalisation and is a significant problem for high-risk babies and children.

Full term babies get antibodies from their mothers during pregnancy, and these help to fight RSV and other viruses. But babies born prematurely often do not get enough antibodies before birth. Each dose of the Synagis vaccine gives them enough RSV-specific antibodies to help fight RSV infection for about 30 days, but at £4,000 a course, it’s not cheap! Doctors have to get special sanction from the Primary Care Trust Board to give the go ahead on every baby that needs it. Madness!

Anyway, their vaccinations seem to be working at the moment as they’ve not had anything more than the colds/chest infections (touch wood).

Sleep has obviously been a problem, and it has been a big struggle helping them to settle at night. Ella has usually been the one to have problems with sleeping, but for a few weeks now, she has been taking Vallergan (an anti-histamine with sedative properties). Seems to do be doing the trick at the moment …

Think I may try some tonight!

Category: General Ramblings

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Comments (3)

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  1. SRJanit0r says:

    I have twin girls that were born @ 25 weeks. They are 4 now. One with pretty severe CP and hydrocephalus in 2 ventricles and one who was just a little under a pound at birth who is less disabled with no hydrocephalus. I totally get what you are saying. It is difficult negotiating the obstacles of parenting children with disabilities. You have my utter most respect. Keep up the good fight. They will grow to be strong and healthy

  2. SRJanit0r says:

    Best wishes to all of you :)

  3. LK says:

    RSV almost killed my full-term baby at 6 weeks old. Both the father and me were so run down after birth and bring the baby home .My husband is the one who brought the RSV home to us. First it was him, then it was me, and because I was taking care of the newborn 24/7, I gave it to him. It was the most terrifying moment of our life. He had retractions, severe RSV where he was in the hospital on oxygen and IV for a week. He didn’t get better until day 7!!! The @#$# pediarician and ER didn’t take it seriously because he wasn’t a preemee. We seriously need to educate doctors/ER staff that ANY BABY who is UNDER 6 MONTHS OLD PREEMEE OR NOT, RSV CAN KILL. I will never, ever forget those moments or that week with our baby. Since then a cold goes right to his lungs and he has been diagnosed with virally-induced asthma. A cold goes right to his lungs and he requires the same treatment as a severe asthmatic. I constantly worry when he’s sick with lung issues/bronchiolitis that he is going to die.

    Take RSV seriously no matter if the baby/child is preemie or not. It can save your child’s life. Demand answers, treatement, and don’t listen to “protocol” of preemie or not. Every child matters.

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