ACTH-Week 4 Complete!

Today we went to Riley for his 4 week checkup.  At 1pm he had a brief EEG and then we met with Sarah McCammon to discuss the results and what our next step would be.  The EEG showed no signs of Hypsarrythmia.  Which is great news!  Hypsarrythmia is an irregular brain wave pattern that is associated with infantile spasms.  The EEG still shows irregularity in brainwaves which is likely to turn into a new form of seizure.  We were informed that this can happen so we aren't really surprised.  Tomorrow we will begin weaning Nicolas off his ACTH.  He is currently getting .6 mls a day.  Each week I will reduced the dose by .1 ml.  If he does not tolerate the weaning (meaning his spasms increase in number) than the amount we reduce will be less.  He is currently having 1-2 spasms a day...but he has not had any yet today.  Sarah McCammon said that even though we will begin weaning doesn't mean we will not continue to see improvements.  

Last week Nicolas started to have some heart rate drops while on his monitor at night.  Dr. O'Brien sent us to parkview to have an EKG done.  It turned out normal so we went to see a pediatric cardiologist.  Dr. Gyzl did another EKG and an ultrasound in her office and found that Nicolas' heart is perfectly fine.  So she put him on a heart rate monitor over night...and wouldn't you know it...he didn't have one drop!  But every night since then he has!  Last night I got up 4-5 different times.  He is breathing fine and his color looks good...It is briefly dropping and correcting itself.  BUT this new symptom is a bit "alarming" (pun intended)...So tomorrow I will call the company that owns the apnea monitor and have them come to our house to make sure it is working properly and to have the information from the monitor down loaded.  Sarah McCammon plans to call Dr. Gzle and request that Nicolas be on the monitor until he has a heart rate drop so that we can see exactly how low it is dropping.  From Dr. Gyzl's point of view, Nicolas' heart is working properly and that the drops occur due to neurological issues.

SO...that is what we learned today.  It was a good day!

I will let you know how he does throughout the weaning process!

We will still have weekly lab work and blood pressure checks until completely off the ACTH.   Nicolas should be off ACTH in about 5 weeks!  

Keep prayin!

Felisa