GI Visit

Otis has been having GI related spasms that sort of mimic his seizures. His 24 hour EEG in April confirmed that these spasms were not seizures and Dr. A suggested that they might be GI related.

Since then Otis has been working with a GI Doctor to fix these issues. We've tried different tactics to get the spasms under control, but they have slowly worsened. For the past few weeks (or a month, it's easy to lose track of time these days) these GI spasms have been pretty nasty. He averages 5 clusters a day of between 10 and 140 a cluster and they vary in severity. Some are slight and end after a good burp, while others cause him to throw his head and arms back violently while he is either gagging or vurping.

Since the visit in April, and treatment that followed, we have seen pretty good seizure control (between 10-30 a day). However, over the past few weeks, or month, it has been difficult to differentiate between GI spasm and seizure. We need to get the GI issues figured out so that he isn't in pain, and so that we can get back to work on seizure control.

SO...

Tomorrow we'll go back to CMH and Otis will have a EGD and pH Study which will monitor the levels and changes of acid content in the esophagus.

It won't be fun. He'll have to be put under anesthesia for the EGD and will have a tube down his throat for the pH study. But, we've got to get a handle on these GI spasms in order to move forward.

Thank you all for your support and prayers. We've had some rough stretches, but we have always felt supported by those that love us...and by lots of people we've never even met. Please know that we have been strengthened by your support, from hugs to texts to prayers. Thank you so very much.

Please keep Otis and his medical team in your prayers over the next couple days.


p.s. Otis and I want to say how thankful we are for Kathy. She was in a very nasty head on collision Friday evening, but besides some bruising and slightly sprained ankle she is doing well. We are so very blessed.