Surgery Cancelled....Again!

As you know, we were called to go to U of M on Friday, July 6th for a follow up for Sophie in Neurology. They wanted to do a 2hr. EEG so they could get a better read as to what is happening in Sophie's brain. The results, to say the least, we unexpected. Unexpected because we have been giving her anti-seizure medication and she had been doing well.

Sophie has Hypsarrhythmia. The definition, taken from Wikipedia is below:

Hypsarrhythmia is an abnormal interictal pattern, consisting of high amplitude and irregular waves and spikes in a background of chaotic and disorganized activity seen on electroencephalogram (EEG), frequently encountered in an infant diagnosed with infantile spasms, although it can be found in other conditions. In simpler terms, it is a very chaotic and disorganized brain electrical activity with no recognizable pattern, whereas a normal EEG shows clear separation between each signal and visible pattern.

Exciting, right! This is apparent when Sophie is awake and even more so when she is sleeping. You should see the EEG, it isn't pretty!

So, what do we do from here? Great question! Dr. Dang (works with Dr. Leber) has put Sophie on a HIGH dosage of steroids which is supposed to give her brain back the structure that it needs in order for Sophie to develop mentally and start doing the things she is supposed to, even with MWS. We will revisit in 1 month with another EEG and clinical follow up.

In the meantime, Soph is on this medication 3x a day along with an antibiotic 3x daily every M,W,F as well as medication for acid reflux because her steroids will give her more acid. Just what Sophie needs. Sophie has been more irritable and it has only been 4 days. What we need to watch for is that this medication attacks Sophie's immune system so if you are sick in ANY way, please don't ask to see my child. She absolutely can't be around anyone that is sick, even if it is JUST a runny nose. Just a runny nose to Sophie on this medication can result in much worse for her. This medication can also cause a rare lung infection, which is the reason she is on the antibiotic. 

If you recall, Sophie was on Keppra, which is an anti-seizure medication. The prescription was written by the ER doc at Bixby and we dropped it off immediately at CVS in Adrian. Sophie has been taking this medication for 1 month and on Friday our doctor realized that she has been getting 10x the amount needed!! Needless to say, but I am going to say it anyways, CVS in Adrian has been overdosing my baby for 1 month. They completely messed up her dosage and all they have said is, it happens, we are sorry! Really? WTH? You could have killed my child and all you have to say is "It Happens"? Luckily, for Sophie, this medication is what they consider a "safe" one and all of her levels have come back normal. We currently have to gradually take Sophie off this medication. Sophie has enough going on that is out of everyone's control, the last thing she needs is for someone else to cause issues for her!

With all of this said, Sophie's heart doctor, Dr. Butto, has cancelled her surgery once again. He believes that Neuro has the lead and once this is taken care of we will reschedule her surgery. This pushes Sophie even closer to having Open Heart Surgery because our window of opportunity keeps getting smaller and smaller!

Sorry, this is a lot of information. Once I started, I couldn't stop. Besides Sophie being irritable she is fantastic and she even has her 1st tooth! We were so excited, I mean it has taken her 15 months to get it. We were going to celebrate with Spaghetti, but Sophie didn't want anything to do with anyone! Ah, this is just for a month, right?