Articles I Have Written
- The Best Books for Kids with Hearing Loss
- Sleep Studies for Kids
- Adjusting to Hearing Aids
- Free Resources for Deaf and Hard of Hearing Children
- First Steps When Baby Can't Hear
- When Baby "Refers" on the Newborn Hearing Test
- Water Sports with Hearing Aids
- What is the Newborn Hearing Screen?
- The Best Hearing Aid Accessories for Kids
- Choosing Eyeglasses for Kids
- Great Hearing Loss Simulations
Monday, April 22, 2013
Back to School and A New Pediatric Specialist
We have had a chaotic spring, with the boys' surgeries that took up our lives from late February through mid April. I am so grateful that everyone has recovered! Nolan went back to school today, and was happy to have his routine back.
I recently had a friend tell me about a pediatric specialist in our (relatively) local area who takes on difficult cases. My friend's children are also complex, and this specialist is keen on finding an accurate, global diagnosis for her kids. I am in the process of trying to get an appointment for Nolan, as he needs someone to review his entire case and look at the boy as a whole. Currently, his diagnoses are (organized by system):
Chronic sinus infections
Chronic ear infections (5 sets of tympanostomy tubes)
Progressive, mixed hearing loss (currently moderately-severe to severe). Hearing aids.
Obstructive and central sleep apnea - C-Pap user
Severe reflux/Nissen fundoplication with g-tube placement
Failure to thrive (supplemental feeds for ~ 800 calories/day)
Periodic vomiting attacks
Astigmatism (both eyes)
Myopia (right eye)
Amblyopia (right eye) - treated with glasses
Posterior urethral valves
Innocent heart murmur in the mitral valve area (echo normal, sounds of regurgitation from mitral valve)
Mild hypotonia, primarily in the hands and arms
Fatigue with walking
Unexplained leg pain (severe & periodic)
In any case, I'd be glad to have his entire case reviewed, just to make sure someone hasn't missed something obvious along the way. In addition, I want to make sure that we're treating Nolan appropriately - I don't want to do any more surgeries until we're positive it is the right treatment for his system as a whole.
The pediatric specialist has two "sides" to her practice - a general pediatrics side and a rheumatology side. I am currently waiting to hear back from the office to see which "side" Nolan will be booked under - with the hyperflexibility and leg pain, they may book us under rheumatology rather than general pediatrics.
I just hope they can help us find some answers.