Meeting with Dr. Martin Summary - Joel

Since Teresa had been up the entire night with Riley, she decided it was best to stay at the hotel and get some sleep. So, I got Riley and myself ready, and off we went. Let me add, I stopped by the front desk to get a late check out, but they were totally booked. So poor Teresa had to get up a little earlier and get everything packed up, then call the front desk to send someone help load up their luggage cart. No rest for the weary!!

So, when we got to the clinic, Riley was in a great mood. Our appointment was at 9:45 am, but we didn’t get back to a room until 10:15. Finally, around 11:30 am, Riley’s good mood was used up; just in time for Dr. Martin to come in and see. I’m actually very happy he did see this outburst; he even said its one thing to hear about it but a much different story to see in person.

The first thing we did was to review the results of all the testing that had been done, which I will summarize below.
1 MRI:
o The damaged white matter in the frontal lobes showed “internal Improvement”. This was new back on the MRI done in Oct 09, and they never could figure out what had caused it. Regardless, it appears to be healing, so thank you God!!
o The damaged white matter in the back of his brain, which is caused by ALD, has shown “interval progression”. Dr. Martin did not seem too concerned with this, as he feels his functionality has stabilized. As always, we’ll just have to keep an eye on it.
o Executive Summary: Good news overall, as the front lobes seem to be healing. However, on the flip side, this doesn’t help explain why Riley’s behavior has changed so much. The behavior he exhibits is not normal for ALD patients. They tend to be very calm and lose motor skills; Riley’s motor skills are great, and he certainly is not calm!
2 EEG:
o No seizure activity noted
o The “visual evoked response” portion of the test shows “no definite connection between the retina and the visual cortices of the brain”. So, as we all expected, Riley’s eyes function just fine, but unfortunately the connection to the back of his brain is gone. He may see shadows, but that’s about all.
o The “auditory evoked response” portion of the test was abnormal due to mild prolongation of “I-Vc IPL” following stimulation of the right ear. Dumbed down; the nerves in his left ear are working great, but the right not as well.
o Executive Summary: Good news on the lack of seizures, so we can start weaning his Kepra. However, the confirmation on his lack of vision is bitter sweet (we knew it, but now it’s final). Now we also know he can hear, but it doesn’t necessarily mean he understands what we’re saying.

3 Echocardiogram
o Everything looks normal, and unable to see the mass that was previously noted in his right atrium.
o Dr. Martin to confirm that “unable to see” means it’s gone; if that is the case, we can stop the daily aspirin.
4 EMG (nerve conduction):
o “This study does not demonstrate electrophysiological evidence for a demyelinating neuropath.”
o Translation: the peripheral nerves in his arms and legs have not been damaged.
5 Chest X-ray:
o Small volume, but clear lungs.
6 Blood work:
o All within range, with the exception of his Vitamin D. So, we have to restart one med, but only need once per week.

Dr. Martin and I discussed Riley’s behavior, and he expressed the need to be more consultative with Dr. Escolar, the head of the UNC Childhood Center for Learning and Development. She is the most qualified to address his disease as well as the behavioral issues. The doctors at Siskin are good, but they are not very knowledge with ALD, more traumatic brain injuries; Riley’s deal is not an “injury”. So, Dr. Escolar’s first recommendation was to take Riley off a lot of the meds he’s currently on, and to start giving him Prozac.

There are some more meds we’ve changed, but I’m not going to go into all that detail. What I will say is I’m getting hopeful again; lost hope there for a while. Riley is a very unique case that requires the “best of the best” to figure out our course of treatment. With Dr. Martin, Dr. Escolar, the pediatric Neurologist at Duke (name?) and Dr. Stegall, I feel we have that team!!

That’s all for now; I’ll let Teresa tell the events of today at Shannon and Rich’s house. I will say we all had a great day and too much sun!

Peace and God bless!