Monday, May 9, 2011

Leaky Valves and Slow Waves, A May Health Update

The doctor's visits are picking up again: two last week, four this week, and at least two per week for the foreseeable future now. Our pediatrician thought Naomi's heart murmur sounded louder last month, and since it had been almost three years since her last echo cardiogram (ultrasound of the heart) she ordered another one. Emma also has developed a milder heart murmur so she got an echo scheduled too, and an EEG (brain wave test) since her head MRI had showed some abnormal myelination. Today we went in to discuss these results.

Naomi's echo cardiogram showed some minor leakage in two of the four valves of the heart. The radiologist called it "mild mitrial insufficiency which does not appear to be clinically significant at this time" and "trivial tricuspid insufficiency." Our pediatrician, however, knowing Naomi's full clinical picture better, was not so glib. These valves were not leaking three years ago, and such things can result from autoimmune diseases (like Celiac, and rheumatoid arthritis) and progress to much more severe problems. We'll be going to see a cardiologist now, but this is also more for me to discuss when we finally go to see the rheumatologist next week.

Emma's echo cardiogram was, thankfully, normal. Her EEG however, was definitely abnormal. The impression was, "Abnormal EEG obtained in the awake state. The findings suggest very mild diffuse cerebral dysfunction. Various metabolic or congenital factors may exist. There is no obvious epileptiform activity." Which means that, while there was no evidence of seizures, there was a general slowing of all brainwaves. This gives us more evidence (correlating with the brain MRI that showed decreased myelination) that her brain cannot effectively transmit the electrical signals it needs to in order to think clearly, speak clearly, or move in a coordinated manor. In other words, everything comes more slowly and with much more effort for her. There are many possible causes and diagnoses out there. This will be more to discuss when we finally go to see the neurologist this Thursday.

Both Naomi and Emma had more blood drawn today. Naomi was thrilled that it was only two tubes of blood, and Emma sat peacefully as they drew 17 tubes from her. Hannah cried for both of them, and Toby ate Kix.

Tomorrow Naomi goes to the ophthalmologist to recheck on the eye crossing (which is worsening again), to look at her optic nerve to make sure it isn't swelling from the cyst in the brain, and to order new glasses since hers mysteriously dropped out of existence several months ago. Wednesday Emma sees the ENT to see if she needs a second set of ear tubes, since only weeks after the first set fell out her ears are again full of fluid, and she is again flunking the hearing tests. Thursday Emma goes to see the neurologist we've been waiting over two months to see, and I hope she can shed some light on the inner workings of Emma's special mind.

Next week I have to see a maternal-fetal specialist since my OB got scared by my previous pregnancy history, and he doesn't believe me that there isn't anything they can do to diagnose or treat the next baby at this point anyway. Then, next Thursday I take Naomi to see the rheumatologist who will hopefully help us understand just why she has chronic joint pain and heart valve deterioration and what in the world we can do to slow this autoimmune process.

Tonight, I am tired, but it helps to vent it out here. One day at a time. On a positive note, I made sure to give Emma extra hugs and kisses today, and she just soaked them up. I understand her need for constant love, affection, and affirmation more now than ever, and she rewards me with the most awesome smiles.

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