Wednesday, March 15, 2006

We are in for some changes...

Cameran is finally over her pnemonia but still has a slight cough but her Pediatrican said that she can hang on to it for atleast a month. But she doesn't act like it bothers her as before she coughed all day! Her seizures are still staying up around 15 and are back in clusters again so we are changing some meds around. Her Neuro gave us a few options: upping her Zonegran another 25mg or trying one of these 2 meds Vigabtrin or Depakote. So I looked both up and we decided NOT to go with the Depakote as it has terrible side effects of Liver failure (more of a chance of this if under 2 yrs of age) or damage done to the pancreas, bone loss(long term of taking), hair loss, tremors of hands or other parts of the body, upset tummy and vomiting and some other mild effects of drowsiness and such ! Its just not something we are ready for! We hate having to make these decisions its just so scary to put her in this type of situation with these risky meds but too we don't want the seizures to continue as they can just cause more damage! So the Vigabtrin is what we are considering but it will cost as its not FDA approved so it has to be payed out of our pocket and its gonna be about $150 or so a month depending on her dosage. This is one of the 1st line meds used for Infantile Spasms its just harder to get here since its not offered mainly because of the side effect of Periphal Vision loss. But our Neuro says it should be offered in the US soon until then it would have to be ordered from Canada.
So right now he is looking into the dosage of the Vigabtrin for her weight so we know what we are up against. Until that is started we have decided to go up on the Zonegran another 25mg at night to see if this will help. We were unsure of doing this since she is already at the max dose for her weight but he says sometimes it calls for it so we will see, she starts it tomorrow!

Cameran had her 2nd hearing test on Monday and it is still showing the same results of her inner ear not responding like it should they say it should spike up and hers stays with a slight hump. The booth room test she did was ok 20 and below is normal and when she called her name in a normal tone she would respond putting her at a 15 which is good but with low noises it was at 40-50 so they say she is showing some signs of hearing loss but can't be to sure. So they have her scheduled to be seen every 3 months until we get an accurate reading since she is so busy and can't sit still! Her next scheduled one is June 12th where they want her to sleep for the first half and be awake for the room test.
Her eye test was on Tuesday in Nashville and she did great they dilated her eyes(this made her mad but just for a minute) and then he took a look and they said her eyes looked perfect so no worries there which is fantastic news!!!
Cameran starts Physical Therapy on the 21st and her feeding classes(OT) start on this Thursday at 9:00 both with Special Kids. So we will keep you updated on how things are going!!! (She was enjoying the outdoors the other day and decided to lay down in the grass and prop her legs up and just watch daddy and her big bubby fly kites!)


Kelly said...

Hi Karen!

I've been following your blog and your beautiful daughter's progress.

I, too, have a daughter with intractable epilepsy. We have used Depakote and Zonegran also. We haven't tried Vigabatrin yet, but that is our next line of defense. Yet, I was told that the Vigabatrin causes blindness, not just peripheral loss, and this is the reason it is not approved here (although I DID hear that it is THE first line drug for IS in Europe). Where did you find your info? I will probably need to look it up, as my daughter doesn't stay on one med too long!

I look forward to reading of some sunny days ahead for your family...

Take Care!
Kelly Morris

Kelly said...

So good to hear back from you! We live VERY close! You can email me through my profile page....I hope you do!

BTW: I have a Caleb too!