Neurology

We went to the neurology clinic last week. Ethan has been struggling a lot in school, especially this year. We went in to have him evaluated for ADHD and any other problems that are common in CHD kids. Our doctor gave a talk to our heart group last month, and explained all about how ADHD has an extremely high prevalence in CHD kids - around 40-50% as opposed to the normal 4-5%. After our appointment he claimed that Ethan definitely does appear to have ADHD. He also said Ethan has motor apraxia - which after the heart group meeting I had suspected. This means that his coordination is terrible basically. Sequencing motor functions is a struggle - things like skipping, jumping, and more complex motor things as opposed to the basic walking, running, etc. We already know he was diagnosed with speech apraxia years ago. Thankfully he's been progressing in his physical therapy, and hopefully will continue to improve as the warm weather comes and he gets out more to play and practice.

For the ADHD we are trying to find out if medication will be allowed. Most of the meds for this contain stimulants and/or things that mess with the heart rhythm. Since Ethan already has major rhythm issues we're not sure if he'll get approved or not. Hopefully between the cardiologists and neurology they can find the right medication to help him. He also said that getting his ADHD improved will help him sleep. The boy just cannot sleep - and the doctor thinks maybe his brain just can't shut down at night to allow him to fall asleep. Hopefully we can get that figured out too. He didn't know what to do about the middle of the night waking up though. That has nothing to do with ADHD apparently. Ethan's normal night schedule is bedtime routine starting about 8:30. By the time books, songs, and prayers are done it's about 9pm. He doesn't actually fall asleep usually until around 11:30pm, then wakes up again between 3-4am. Then he's up for the day between 7-7:30am. That's just not nearly enough sleep for him - especially with his heart!

They also are considering a headache medication, but I think I'm going to try to hold off on that until after his next cath. Cardiology is going to put a stent in the SVC to relieve the pressure there, and we think that might be causing his frequent headaches. If that can get fixed without more medication I would be thrilled. That will be happening soon (cath in the next couple of months) so hopefully they'll have no problem waiting on the medicine.

Neurology said they would talk with cardiology this past week, so we should know within the next day or two about the medication plans. We are supposed to return in about three months to do a full neuro exam - takes about three hours including the neurocardiology clinic, neurology, and behavioral clinic. That should be interesting...  :)

Other than that things are going fairly well. Ethan is sick right now with a lot of congestion and a wet cough. He's back to his full routine of breathing treatments and the vest. He was really bad over the weekend, but today he's showing signs of improvement so hopefully he'll be feeling back to normal soon!

And here's some pictures of Ethan playing with a worm he dug up this past weekend. :) This boy is a nut!