30 Oct Neuro

Pace had a Neuro appt w/ the Las Cruces Neuro, Dr. Woody. We talked more about the seizures Pace had, and decided to try medication and see if that takes them away. We scheduled another appt for next week on the 8th as well so we can discuss the EEG from 2 days prior on the 6th at UNM. 

Dr. Woody is not sure if there is something neurological linking his seizures, swallow troubles, feeding issues, bowels and gross motor skills. Neuro stuff is hard to comprehend becuse it is so complex! He said that trying the seizure medication (Keppra) will only help and not hinder development. If the make the seizures stop, and he stops having swallowing issues, then we've solved the problem. 

Pacens seizures are called complex partials. He will zone out for a few seconds and tighten up his muscles, sometimes he will throw up, and he is twitchy/jerky and trips over nothing falling into the floor. I've witnessed 6-8 of these, but I've correlated the days where he trips a lot, takes 4-5 hr naps and also sleeps 12-14 hrs in the same day with little to no extra activity to seizures. His appetite will also be less on those days too. 

Going back to his swallow troubles, the feeding rehab team called it dyspagia (dis-fA-jah), or trouble swallowing. His eye lids will turn bright red, watery eyes, hard swallowing, hoarse voice... They recommended to thicken liquids to prevent aspiration. The thickener is on order so it will be here next week. The Neuro also recommended that he get a swallow study repeated due to the dyspagia coming on the last few months. He had one done when he was 8 weeks old. He will drink a barium drink and the radiologist will watch it go down his throat through a live X-ray and take X-rays at the same time. 

Reguarding the GI being linked to seizures, Dr. Woody recommended that we seek a higher ranking hospital for GI care (UNM still doesn't have a GI department.) He said there could be something anatomically incorrect in his throat, so an X-ray and MRI may be necessary to see if he has a fistula, cleft somewhere, stricture or other abnormality. We are going to try and see a new GI in El Paso, Dr. Rosas-Blum (he did Pacen's analrectal manometry procedure in Fall of 2012) before we seek further care from Dallas. He even said it would be worth while to take a trip back to Iowa to the U if Iowa Children's hospital. 

Pacen's developmental therapist, Amy, she is great. She's got Pacen's files being looked at by a developmental pediatrician and she wants to see Pacen as soon as possible because he has red flags in his record that need to be further looked into. She is concerned about his birth APGAR scores were so low, this wanting to look further into his neurological issues. That may mean another trip to Albuquerque, because she only comes to Alalmogordo every 6 months and to Las Cruces every 4 months. I hope we can tag that appt onto one of our already scheduled Albuquerque trips! 

It was a really great and productive appt and I feel reassured that we are correct in perusing further care for Pacen. 

Appts that are coming up: 

4 Nov: feeding rehab, rheumatology, feeding rehab @ Carrie Tingley Hospital

5 Nov: feeding rehab @ CTH

6 Nov: EEG @ UNM 

8 Nov: Neuro @ Las Cruces