Increased Seizures... Incresed Meds....

Yummy Sucker..... This was Cameran's ist sucker and she loved it......But what a sticky mess it made ;-0
We have been doing some alterations on Camerans medicines trying to add more mg to get better results and so far no changes. About 2 weeks ago we upped her Zonegran to an extra 25 mg totaling 125mg a day that didn't work so we upped her Klonopin to another .25mg totaling it to .75mg a day it too has shown not to work. Everyday her seizures have just increased more frequently and in intensity!
So what we are trying now is upping the Topamax another 15mg equaling it out to 65mg a day, we will see how this goes, she starts it tomorrow night. If this dose doesn't work we have room to grow so we will go that route until reached full dosage to see what happens if she shows to not tolerate the increase we will have to back off and try a new med. This will be Vigabatrin! She has her 4th EEG on the 14th and results to follow and we will discuss the ordering process and where to go from there.
These 3 meds is all that she is currently on: Zonegran, Klonopin and Topamax.

I love my new Fridge Farm.... Cameran totes this thing everywhere its her favorite toy right now!! Its the cutest and best learning toy of animals and their sounds! Gotta love Leap Frog.

Check out Baby Girls Belly... The girl is enjoying her food and on this night she ate so much she was having problems breathing, she didn't know when to stop.... And actually when I put her down from her chair she was trying to eat food she dropped on the floor. Her belly was so swole and she grunted every time she bent over it was so funny :-)
She actually has been doing so well that yesterday after eating class they thought they would weigh her and she has gained a pound making her weigh 20.6 pounds!! WooHoo Cameran, we just hope the upped Topamax doesn't ruin all this progress she has made!

Cameran and her Big Bubby Caleb.... They are loving this Spring weather!!!!

Whats for Homework?

We have been through quite a week with the seizures going up and down. Right now they are staying in the 15-30 range. We upped her Zonegran Friday night to another 25mg making a total of 125mg a day. We haven't seen any changes with her seizures so we called her Neuro today as requested and we are awaiting his reply as what do we do next. I'm pretty sure we are just going to go up on the Topamax as she can go up another 50mg making a total of 100mg a day. If you don't remember this is the med that we started in December that we have had so many problems with as far as her eating goes. It took us 8 weeks to finally get her to start taking foods again so we are hoping with this increase this doesn't happen yet again! But right now its either the harsh side effect meds or this so we are chosing this while we await her EEG in April. The Topamax is the one that she became seizure free on for 4.5 weeks so we are hoping for some good results! We are just so worried of the eating issues! She has her feeding classes(OT) every Thursday morn at 9:00am with "Special Kids" so hopefully we can stay on top of it! (See what they have us doing below)

On another note she had her 1st Physical Therapy on Tuesday and they will be now requesting her to be seen once a week. Her balance is off and they noticed she walks on the insides of her feet(puts all weight on her ankles and inwards) and drags her feet causing her feet to split and have caluses on her big toe and on the sides of that part of her feet. So they will be casting her feet there and sending off for the brace supports to fit down in her shoes to give her better ankle support. They think this is why she is so off balance. They will also be working with her climbing, kneeling,(doesn't do either) and her attention span for one item as she can't seem to stay focused on any one object. They say how do you keep up with her since she just walks everywhere and doesn't stay still -she did this while there with PT.(I just keep all the doors closed and let her rome around) but they say she just seems so overwhelmed by things that she doesn't know what to do but walk.. walk.. walk......She is a busy little girl thats for sure! Our homework is to show her to climb up and down stairs and let her walk on uneven surfaces to build up that tone. Our backyard is the perfect place for that but if only we could get some warm weather to be able to go out, doesn't feel much like Spring right now!!!

Ok now here is some pics of Cameran experiementing with foods, another homework assingment from her feeding OT. Messes drive me nuts but Cameran doesn't mind it so much. We are suppose to let her play in her food so she can get the feel of things and try different textures as she has a sensitivity in that area. Here she is playing in yogurt and graham crackers the goal is trying to get her to dip the cracker in the yogurt and eat off that. So far she doesn't understand it but with a little help from Mommy she is slowly starting to understand the concept. She is doing great feeding herself the fruit puffs which she LOVES....
Check out her face she really didn't know what to think... The yogurt was cold but will wake her little mouth up and we hope she will soon start talking/babbling more! They told us to try her on Lemon Ice that it should really Wake her mouth up...I'm sure with a sour face too! ;-0

*I will be adding some more photos and info but this site is not working right so I'll try again later!!!!

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!)

Seven Months and still Seizing!

It has been 7 long months and we have gained great grounds but she still continues to have about 4-15 Head Drops a day but we think the extra she has been having is probably due to her recent illness! Last week she went to the Dr. 2 days in a row. She started out with a temp of 101.5 Wednesday morning so I took her to the Dr (the 1st day she saw a different Peditarician as they where very busy and said there where lots of things going around right now, YUCK...) he said I just had a cold as I had no other syptoms besides the temp and cough, but said if things got worse like a temp of 103 to bring her back since mommy had the yucks, they wanted to make sure it didn't pass to me! Well over the course of the day and night her temp rose to 103.8 waking her from a knock out sleep, screaming early Thursday morn. I felt so sorry for her she had a pretty bad cough, mommy was so scared I had picked up her Broncitis or Flu she had! She took me back to see my Ped this time (Thursday) and they did an X-ray that I absolutely did not want to do! But thankfully with only 2 trys they got a good shot of my little chest to see that I had Pnemonia. So with an antibiotic I was sent on my way and I was so happy to finally be at home to move around!
Cameran continued to run a temp till Friday but was not contangeous. I guess seeing her MawMaw again after 3.5 months just cheered her right up as her mood totally switched and she was all smiles again(picture to left was her and her MawMaw together right before she had to go back to Louisiana again :(.
Cameran still has a really bad cough and almost gagging at times as she tries to catch her breath from coughing so hard. Thankfully she doesn't really wake from coughing all night she just ruffels around!
This has not affected her eating at all, we have managed to get her completely off the formula (a little sooner than we where expecting) she got to where she refused it probably tasted bad after having the good ol' Vit D! She is taking table foods for Breakfast and Supper and #2 Jar foods at lunch time!
Cameran has started babbling up a storm since being off the Keppra we can't believe the difference it made on her. She is showing more intrest in things around her(its more noticable if you are around her daily)! We just think she is doing great but know she still has a long ways to go before reaching her age range she is suppose to be in! Hopefully with another weaned med it will bring us that much closer.....
Cameran is 13 months old and is weighing in at 19 pounds and is 30.5 inches tall! She loves to be outdoors as you can see here! We just can't wait until Spring gets here so she can have more room to practice on her walking and maybe catch a little sprinnnngggg in her step and soon start running. She is always on the move looking for new things to explore!! We know with the uneven yard we have it will for sure build up that low tone in her legs and trunk. Maybe to tone up those arms we can install the monkey bars that goes to their play set :-0 (LOL)