June 5th 2009 - They´re Back

As most of you all know we have been fighting Alicia's seizures for about 3 months. At first they were not so strong, then they got stronger, then recently it seems that they have gotten a little better. The doctors have been trying their best to adjust Alicia's medicines, try new medicines, they have taken numerous blood samples to check the concentration levels of the medicine in her blood, given her EEG's (brainwave scans), and held numerous meetings with doctors from different fields to try to see what we can do to get Alicia back on a better path.

On Tuesday we had another EEG, on Wednesday a team of doctors met and discussed the outcome of the EEG, and on Thursday we got a call from Alicia's lead doctor. Unfortunately the really bad seizures called infantile spasms had reappeared. The news was the exact opposite of what we wanted to hear. We were surprised and the doctors were very surprised. None of the doctors, whom work exclusively with seizures, had ever seen infantile spasms come back. Even the neurologist we met in the States said that if we can break the infantile spasms they will not come back.

Infanitle spasms are very disruptive in the brain. This was the same type of epileptic activity that sent us home early from the States last summer. What the activity does is basically disrupt Alicia's thinking. They cause numerous seizures and during this time she basically regresses.

It really sucks because we have been really patient during these three months watching her development stand pretty much still. Now the idea that she may go backwards is not the easiest thing to swallow. If all of the epileptic activity and the seizures that come along with the activity would just go away, we could get Alicia back on the great learning path that she was on for the 6 months between the last time she had infantile spasms and three months ago before she started having the other type of seizures. It is pretty unfair for little Alicia that she is 16 months old and only really had 6 months to work on developing. We already knew she was going to have some development problems, but you add the seizures to the mix and it is really making things difficult for her to progress.

We got checked back into the hospital last night to start the treatment, which is very aggressive. The medicine she is taking is called synachten. It is some kind of cortisone based steroid that makes Alicia have the wiggles, keeps her awake, she always hungry, and last time it made her swell up like a balloon (she pictures from September's blog). The doctors said that we will probably be able to go home during the days and come back at nights during the weekend and hopefully by next week we will be able to stay home the whole time except to come in to get her shot and have her blood pressure taken. We have no idea how long she will be on this medication for. Last time it was five weeks counting the time she got weaned off the medication. The seizures are not nearly as bad as they were the last time she had infantile spasms, but that does not necessary mean they will go right away. Hopefully they will.

All of this has put Alicia, Linda and my plans a little bit up in the air for this summer. We were looking forward to going back to the US for 5 1/2 weeks. We were suppose to leave on the 18th of June which is only 2 weeks from now. We were going to meet Alicia's new cousin Harley and her big cousin Jamison, have week at Nags Head with the whole family, go and meet Mickey Mouse with Grandma, and show Alicia's God parents (from Sweden) and her friends around DC. As we have learned a lot over this year, plans can change quickly The most important thing now is getting Alicia back to being the Alicia we all know and love.