Saturday, March 31, 2007

New Seizures Confirmed!

Our worst nightmare come true!

What a rough couple of days for our poor baby girl! Its hard just sitting back watching these things they look so harsh and not only does it scare her it does me as well! I hate them! Run down of the past few days goes as follows:
Come Thursday we had reached the Neuros office and described what was happening so they had us take her to Vandi and have a bunch of labs ran, they thought it was belly related and not seizures, turns out the nurse misunderstood my message. They had us thinking she had Pancreantitis(sp?) your pancreas! Anyways she mistook the seizures I was describing as her having stomach pains????? It totally lost me!!! After the labs they had us come back to the Boro to see her PCP for a full check-up he said everything looked great! She weighed 25 pounds 12 ounces so down since starting the diet 3 weeks back.
Well the labs all came back fine so the Dr called me and I better explained things for him. He then requested her to be admitted Friday the 30th for a 24hr VEEG. So we got there around 11:30 Friday and by 2:30 they had her hooked up ready to go. By about 6:00 she was having a seizure and another one probably right before bedtime. Then 2 in the morning one caught when her Neuro was in the room and how rare is that! I was thrilled. Anyways he says they are definitely a new kind they said probably tonics or partial seizures. How crushed I felt for my sweet little girl, it just breaks my heart. I get to where I never want to put her down so I can protect her from any fears she feels when she has them. Now that she is getting older you can tell she is starting to realize what is happening by the frightened look she gets on her face its just terrible!

My poor baby looked so silly. When they started the electrodes I was beginning to wonder how they would keep those things stuck on there for a whole day. Well I soon learned that they glue them on and boy was that some strong smelling stuff, she looked so funny, wish I would of had my camera. They then wrapped her head in a "sock" most of you know what this is it looks like mesh then they wrapped her head up like a mummy then of course you have these long colored wires coming from her head to the machine so they wrapped those as well so it looked like she had a really long ponytail. Theres about 20 cords so it could have been a big tangled mess so I'm glad they wrapped it all. After they hooked her up she was out like a light for 2 hours so got some good readings there. But she woke up mad to what she had on her she kept pulling the pony tail part not realizing it was attached to her head and it would pull her down : ( What a mess we had when they pulled all that stuff off. Hopefully we can get all this glue off of her before Easter rolls around her whole head looks like its peeling it took them putting oil and some kind of conditioner to get most of it out and a few hairscrubs today as well!

SO we then had to put NoNo's on her(little cast) so she wouldn't pull on it and then she was really mad because she couldn't bend her arms. Cute story is that we had handed her sippy cup to her not thinking about her not being able to bend those arms and that mouth was wide open and tongue trying to reach that straw, it was too funny! Mommy and daddy sure needed a good laugh. Needless to say those things didn't stay on long we couldn't take her fussing from the aggravation of it all. And to you that might not now how those EEGs work well once its on there, there is no leaving the room and you cant go much further than the bed. The machine with Computer and video is all on a cart that's plugged into the wall so not many places you can go and for our busy girl that was a huge problem. Lets just say I'm glad its over.

A great bit of news is that her Hypsarrythmia is completely gone since her last EEG. He said it read much improved by just watching her a little while in the room. We also have not witnessed any of the "Head Drops" in a few days. He says she is probably outgrowing them but not before they formed into another seizure type.

So what this all means is we are dealing with a whole nother ballpark of meds. They will keep her on the Keppra, Klonopin and Keto diet for the time being no use in rocking the boat even more! He named one med they would start her own but I can't remember the name I will have to look it up, if I see it I'll remember it! But he talks as though these kinds are easier to control with meds where as Infantile Spasms are the hardest to control. And we know first hand all about that! Unfortunately this does mean she will probably be on seizure meds for the rest of her life.
We will not find out the full results until Monday or Tuesday. So I will let you know what type they are as soon as we find out. They wanted to all sit down and view the readings and Video over the weekend!

Just keep our little Cami in your prayers!


Kelsey Celeste said...


Love, Tasha and Kelsey

JSmith5780 said...

Karen- what a weekend you had! I forgot that Cameran has never had a 24 hour EEG. I am still not sure how you got to this point without one. They aren't fun, but they get used to them.

It is so great to hear that the hypps are completely gone. I hope you have better luck with this new med. Please keep me posted.

I will try and get a blog posting up about our 'journey' to Washington. It was a LONG few days.