These past few months we’ve seen a few specialists in Edmonton for ongoing concerns with Sienna’s health.
Pulmonologist (Lung Specialist)- Since Sienna’s birth she has been sick often. When she does get a runny nose, it develops into a stubborn cough, with lots of mucus which she has a hard time getting rid of. She often would cough so much she wouldn’t be able to catch her breath and would often vomit. We’ve seen the lung specialist 3 times now since December 2009 and since then she has been diagnosed with asthma and found out she was severely allergic to cats and moderately allergic to dogs, feathers and dust. First she was put on QVAR, a daily puffer, for 4 months but was only healthy for 1 month out of those 4. So, in April he decided to treat her for acid reflux with 30mg of Prevacid daily. We were told that acid reflux can be a problem in those who were born premature and with developmental delays. She was healthy for 2 months straight (April 30 to June 20), which is the longest ever. So with taking the prevacid and QVAR daily, she was eating great and staying healthy until….she ended up stayin 2 nights in the hospital at the end of June diagnosed with ITP (idiopathic thrombocytopenic purpura). I noticed her bruising easily and little red spots under her eyes called petechiae. We are not sure the cause of it; which in most cases they can’t confirm however it is usually caused by a virus. After looking more deeply into the side effects of Prevacid, it is known as rare and extremely rare to cause the blood disorder thrombocytopenic. So we immediately stopped giving it to her. We returned to see the specialist last week and we will try without an acid reflux medicine and see if our little girl and remain healthy.
Endocrinologist (Hormone Specialist )- We just finished seeing an endocrinologist in June due to her poor growth rate. In December 2009, Sienna was measured in his office as weighing 20lbs 8oz and measuring 79.5cm. We went back to see him 6 months later, in June 2010 and she weighed 21 lbs 12oz and measured 83 cm. The weight is a little concerning, she only gained 8 oz but grew 4cm in 6 months. So he decided to run some hormone blood work but still remains sure that the poor growth is due to the CMV (Cytomegalovirus) and not a hormone deficiency. On the positive side, she did grow 4 cm and apparently the doctors look at that more than the weight. As long as she is growing…I guess. We just make sure that she eats well, I or Kevin usually needs to feed her and she still drinks a calorie drink at the end of the day.
Otolaryngologists (Ears, Nose, Throat Specialist)- Sienna has always had fluid in her ears but very rarely does she get ear infections. Now with her CI’s, ear infections can be very dangerous and need to be treated as an emergency as the infection can lead to meningitis in CI users. Her tubes are out and so the debate is on whether she needs another set put in or not. Because she doesn’t hear normally, the fluid does not cause any hearing loss however it can increase chance of infection and it may affect her CI levels. So we go back to the Glenrose again for her 1 year activation anniversary and will do further testing whether the fluid affects her CI volume level. I really don't want to have her put to sleep again...
Other specialists who see Sienna are…
Ophthalmologist (Eye Specialist)– appointment is in October 2010
Audiologist- appointment is August 13, 2010.
I'm really hoping that these specialist appointments slow down a little, they have from last year to this year...however, with the baby coming, I really want to limit my trips to Edmonton (4 hour drive)...especially with winter road conditions around the corner.
2017 Tool Kit: CMV in Child Care Awareness
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