Futher Information and Treatments....

Since this time they have been to the doctors for ....

On Nov. 29, Erin went to Comer’s for an EEG to see if we could begin reducing her medication for seizures. This was based on the fact that we had no visible seizure activity since leaving Comer’s in October. This EEG showed that Erin was not seizure free, and was in fact having “Infantile Spasms” [I.S.] (basically, electrical seizures in the brain), on a pretty much non-stop basis, with periods of “spike”. After researching our options and discussing this with Erin’s Neuro, it was decided that Erin needed to go to Comer’s as an in-patient, and that was scheduled for February 29, 2008. That’s where we were.

However, when we discovered that if I.S. were to go untreated, regression in her development would continue until her condition would reach dangerous conditions, we obviously began a quest to get her treatment as soon as possible. With the assistance of our Neuro’s assistant (Jackie), we were able to get Erin into Comer’s much sooner, and she was admitted on Monday, January 16, 2008, instead of February 29. Clearly, this is a much better situation for Erin.

Now, when Erin was admitted, it was for the purpose of conducting an EEG to confirm the presence of IS. On Tuesday morning, we received word that Erin was having IS, and that she was having periods of severe IS. We were given a button to push if we saw anything at all in Erin’s physical mannerisms while the EEG was taking place. We pushed the button whenever Erin would have what we describe as a cold chill, as though air was rushing up her back or across her chest. We had noticed Erin doing this as far back as we can remember, including when she was initially in the hospital after birth. Since the shiver lasted approximately ½ second or so, we attributed it to her being cold, or reacting to air temperature. These shiver’s almost always happened when she was about to fall asleep, or when she would first wake up and we would remove her from her blankets. However, what the EEG showed is that these shivers were when Erin was having spikes in her IS activity. A decision was quickly made to admit Erin into Comer’s until this IS situation is under control.

We were given four medications to choose from, three of which are available in the U.S., and the fourth is available in Mexico and Canada. We opted for the medication known commonly as ACTH, which we had already researched. We were quickly given a room at the Ronald McDonald house nearby, and we live here with Erin again. This is where we are.

Finally, what’s the future? Well, we had to get approval from both the hospital and the insurance company for Erin to receive ACTH, which we received in short order. Next, we’re waiting for the red tape to be cut through and the ACTH to be brought to the hospital. You have to understand that this medication costs $24,000.00 (yes that is a correct number) per vile, and Erin will go through nearly One Million dollars worth during the course of this treatment, 4-6 weeks. The medicine is currently in Florida, and on its way here. Erin should start her medicine tomorrow, January 17, 2008. Side effects that are possible: High blood pressure, kidney damage, renal failure, heart failure, massive weight gain, irritability, etc, etc.

Bottom line, we either do nothing and watch Erin regress, or we take an aggressive stance and fight this now. It should be no surprise to anyone that we will fight. What this means is that Erin will receive a steroid based medicine given in her thigh (yes a shot), twice a day for the first week, then once a day thereafter until the end of her treatment.

Okay, you should know by now that when I do the writing I am going to give you some instruction at the end, and today is no exception:

Go find someone you love and tell them so. Hug them for no reason.
Play with them, and pray with them.
-- Patrick, Kimberly, Michael, Sydney, Ethan & Erin

Since this time she has been on the medication with checkups regularly.

Questions? Please contact sclark@manteno5.org