Tuesday, December 4, 2012

Ok, I'll Stop Diagnosing Now

This video is from youtube, it's of a baby having an Infantile Spasm (seizure) don't watch it if this kind of thing would upset you.

This video is of Finn having some sort of spasm or brain misfire, it's not as bad as the baby in the video above. (The spasms occur in the first ten seconds or so)

We were convinced. So sure we'd figured out the cause of all of Finn's many issues. But alas, we were wrong. The day before Thanksgiving Noah and I were reading and watching videos about infantile spasms. IS is a form of epilepsy/seizures that look like little startle reflexes, it's kind of a scary thing because if it isn't treated quickly it can ultimately lead to permanent brain damage or even death. Finn always does this weird jerking, startled movement  (see second video) and we thought they looked quite similar to the movements these babies with IS were having (see first video). All the symptoms were there, colic, delayed development, jack knife movements, etc. We were frantic all Thanksgiving day and for the next week until we could get into our doctor. We finally got in and she reviewed the videos we took of Finn, talked to some of her colleagues who were familiar with IS and she told us she doesn't think that's what Finn has. She feels this way because we had an EEG (tests for seizures) done a month ago and the results came back abnormal but they didn't have any indication of infantile spasm hypsarrythmia (crazy lines on the test). We have him on seizure meds anyway which has actually stopped the weird jack knife movements which is good because we think they are some sort of seizure or brain misfire. 

Basically, we are back to square one with the whole ordeal. Nobody can figure it out. We are going to Chicago in March to see Noah's family and we made an appointment with a neurologist at the University of Chicago, just to get a second opinion. We pretty much have to get lucky at this point. Hopefully, one of these doctors have seen a case like Finn and they'll know what to do. My only hope is that whatever is going on in Finn's little brain isn't going to damage him for life. He is just as sweet as can be, and we are loving all his giggles, smiles, and babbling. We hope we can figure all this out soon but until then, it's in the Lord's hands.

We want to thank all those friends and family and even those who we don't know. Thank you for your thoughts, prayers, and fasts. We are so grateful and are feeling those prayers and well wishes every day. Finn appreciates it too! We love you!


  1. Thinking of you guys and sweet Finn! I hope they can figure it out soon!

  2. Here is my friends number, her son has a lot if the same things. Her name is karrie and she said she would love to talk to you about it. (801) 592-7515

  3. Poor little Finn, saying a prayer for you all

  4. I didn't click on the videos because that sort of thing will make me cry but your family will be in our prayers tonight!

    Dearest Lou