Saturday, January 21, 2006

Improved EEG

1-23-06 Cameran's EEG) Results are in her EEG is reading normal! WAHOOOOO! She had 1 head drop on the 22nd and 2 today which is throwing us for a loop but whats most important is that its showing normal. I guess the potential for seizures is still there as he mentioned and thats just what has happened. Maybe it has to do with her new Toothy she got today this makes #7!
*4 weeks and still going strong! Cameran is still seizure free and is greatly improving everyday. She had her 3rd EEG yesterday and she did wonderfully. Having slept before starting the placing of the cleanser/glue/electrodes/gauze. All this did not wake her as she was to be sleep deprived and that she was the poor girl snored with her mouth wide open the whole time. It was so funny! She woke for the last part of the flickering light test and touched at her head one time and that was it. The results aren't final yet but her Neuro and another read some of it. They say it has really improved, which is great news. They say it is NOT showing seizure activity but is showing Potential for seziures-meaning if we don't keep up with meds and such its possible for them to come back. We are to start weaning 2 of her meds very soon. They want her to be at full dose of the Topamax first and that will be next week when she reaches 50mg a day. She is tolerating it well but still refuses jar and table foods and it is starting to show in her weight as she was 19 pounds 5 ounces last week this week she is 18 pounds 4 ounces and is 28 inches long head cm is 45. The Keppra will probably be weaned 1st then the Klonopin and just leaving her on Topamax and Zonegran! She is so happy and loves to smile. She has a new squeel and started a new sound and it sounds like Chewbaca off of Star Wars its hilarious. She isn't really moving forward in her Speech Classes yet where they are also trying to teach her sign language and basic toys on how they work she shows no intrest. Cameran is so destracted by her thumb that we are getting no where. She is starting her Development Classes Tuesday and will have that once a week. She is awaiting her evaluation with OT they will be helping with all the eating issues. She goes back for her next Neuro appt on February 17th. They will later schedule another EEG to see if their are any further improvements!

Today (Sunday the 22nd) she had another break through it was just one head drop like we saw a couple of weeks ago. It's so frusterating to see these things keep peaking through on her. She has been really fussy today and has been fighting her sleep which doesn't help matters. As we lurk into the weaning process it will probably throw some seizures our way which is our biggest fear. If thats the case she will have to be upped on Topamax as she still has room to grow-up to 100mg. I'll post again when she is to start her weaning process and on her final results of her EEG when it comes in.


Kelsey Celeste said...

I'm soo glad everything is looking good!! We will continue praying and give her a kiss for us!!
Love, Tasha and Kelsey

JSmith5780 said...

Karen- glad to hear all is well (we'll ignore that one head drop!). It is great that the neuros are willing to wean two of the drugs. Too often they'll say why mess with what is working, BUT I am a firm believer that too many meds are just as bad.

Don't worry about her speech yet, that is usually the last thing our kids develop. Not to say you should ignore it. Our kids tend to work in stages. First motor, then cognition, then speech. She'll get there, give her time. Austin started therapy within a month of becoming SF. Remember, he already had all his speech and cognition skills before the seizures, he just had to "re-learn" them. It still took him about 2 months to have a normal EEG and a good 6 months before we saw a jump in development. Have faith, she'll get there. Caleb will be a big help to her.

Jen mom to Austin