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)

A Rollercoaster of a Week!

It has been a rollercoaster of a week! Camerans seizures have been up and down and every where this past week! As mentioned she had a cold with a temp last week causing her seizures to go up a bit about 9 a day then things settled for a few days of having 4 or 5 again. Then we weaned her Keppra down again on Monday and things got ugly. Her clusters came back and the intensity of the seizures got worse. It seemed they started to climb in numbers so we called the Neuro with concerns and he informed us that she was having seizure withdrawls. He told us to go back up on the Keppra if things didn't improve but Thankfully it did. We are going as previously planned of having the Keppra weaned completely today! She is having a little more again but we hope with a few days things will be back to normal again. Cameran is eating so much better the past few days. She is taking meals 3 times a day. For breakfast she gets 6 oz formula and a bowl of Toddler cereal(great texture for her). Lunch she gets two #2 jar foods a fruit and veggie and Supper she gets big girl food if she is willing but it has to be mashed. We have her down for formula only twice a day 1st in the morning and one before bedtime the rest of the day she takes warmed(only) Vit D milk(she loves it). Oh and 1 Pediasure(vanilla which she only takes warm also) a day, she is doing great!
MOMMY, I'M READY TO EAT NOW!!!!

Cameran doing her new Kissy Kissy Face! I tried so hard to get this photo she is all over the place and will not sit still for a second but as you can tell its not even centered. She is always on the move! But I just love this new sound and face she makes and so does Caleb! He says she looks like a little Fish....

What's New??

Cameran had a great appointment with her Neuro on Friday! They said her EEG looked great. But are requesting another one in the end of March since she is having about 4-5 head drops since 2 days after her last EEG. Also they say they will have an EEG after every weaned med to make sure we are going forward and not backwards. They couldn't believe she was walking but noticed she is off balance said it's probably due to the meds but won't be sure until she is off some of them. She will be completely off the Keppra this coming Saturday and they won't be weaning the Klonopin until after her EEG in March we will be seeing the Neuro that same day also. Her eating has greatly improved so we are slowly moving in the Vit. D milk with her formula and we hope to have her off that(formula) by the 1st of April! She is taking #3 jar foods sometimes and some table foods she is turning things around it seems. Cameran is still babbling some and picks up new sounds daily yesterday she started making a pig noise in the back of her throat it's hilarious!
Caleb, Cameran and Mommy in yet another snow we had on Saturday and Brrrrr... Was it ever cold 28 degrees and 13 at night! Cameran was all bundled up but loved being out even though it was only for about 10 minutes thats all we could take. Caleb made snow angels for the 1st time it was great!
Cameran biting her lower lip it was so cold. Now she has made this a habit and has a rash under her mouth! Silly Girl!

Cameran came down with a fever on Thursday the 16th so I took her to the Dr. He said it was just her nose! He said when her nose runs clear she will be fine but when it starts in thicker that she will run a temp with it said just some sort of viral thing! But her ears and throat looked great and chest sounded fine minus the slight cough she has at night and 1st thing in the morning. This Picture was taken at the Neuros office her temp spiked back up again while we where there 102.5 so I had to give her some Tylenol well she was fighting with me(she hates meds I wonder why?) and managed to get most of the bottle in her hair and clothes little stinker! Well after that she konked right out before I could even get her picture with her Dr.'s! She ended up sleeping all day poor baby girl! Her seizures picked up to about 10 that day and 9 on Saturday and she has about 3 today so far no temp since yesterday! But Dr. Williamson(Neuro) said this is very common with kids with seizures says an illness opens the door to them so hopefully we can keep her well the remaining of this sick season! The pictures of them in the little play house where also taken at the hospital! They know how to keep the kids Happy! Caleb always looks forward to going to the Hospital in Nashville-as he says!! Oh I wanted to share my Valentine Kiss with you! Valentines morning, Cameran (of course was in bed with me) I felt her moving around but didn't open my eyes yet and just then she leaned down and gave me the Biggest Wettest Kiss ever and I opened my eyes and she said "HEY" and gave me another Kiss and I just melted. She is the sweetest! Later that day she had her 1st Development class with TIPS and as her teacher was leaving Cameran walked to the door and started doing the Kiss Kiss sound with her lips tucked like a fish now she walks around the house doing it. She has been doing new things like this all week, she has come to me and says mama(but I'm not sure if its intentional since she always does it only when fussing)! Who knows, I just love all this new stuff and will take anything!

6 Months since dx's and Things are Looking Better!

Cameran is doing great and couldn't be more happier! She has been all smiles and is making new sounds. We have seen great improvements from her already and in such a short time since we started weaning one of her meds. She has just continued to impress us and has been making us laugh with those new sounds. One is hilarious she sounds like the boy off Forrest Gump: HEHEHEHEHE(this cracks us up all the time), she also says FFFFFFF....., BYEYAYAYAYAY(doesn't know what it means) and Ahhhhhhhh....., WAYAYAYAYAYAYA! She is doing great and Mrs. Susan(speech teacher) was very impressed and thrilled to see such a great improvement just from last week. She was doing great eye contact during class and has been looking for mommy and daddy all great signs! She has also started taking jar foods again(certain brands and flavors) and is willing to try and eat some table foods....YEAH! We are so extatic of all these new things. As said it has been 6 months since being diagnosed and things are looking up. She still has about 1-4 head drops a day but her learning is starting to roll! She had a great Birthday Party and dug right into her cake she was happy at some times and got upset a few times with such a mess on her(just like her Bubby did)! But she did fantastic and was so Happy to see everybody! She starts her Development classes tomorrow(TIPS) and goes to see the Neuro again on Friday the 17th! We can't wait for him to see our baby girl go! Keep up the Great Work Cameran! ;-0

Here is Camerans 1st experience with the snow! She liked it for a little while then it got really cold so we went back in. We have woke up to a light snow for the past 3 days now its just been so pretty to see. Caleb loves it!

Looking Great!

Cameran's 1 year check-up went great. She weighed in at 18 pounds(has lost again) and her length was 30 1/2 so moving right along there. He noticed she has low tone in her legs. I never would have guessed that but we had been telling them how she falls all the time like she is dunk but we just thought she was off balance due to all the meds. She received 3 shots and barley let out a wimper, she is such a brave little thing, I tell you! So proud of her! Her OT appointment was Thursaday and she was one mad little girl since we had to hold out her eating until they could watch her. She took the bottle great and is holding it on her own as you could see in the pics below. She didn't do well on textures she would gag they say she has great oral movements as she mouths toys and spoons wellBut she has a sensitivity to textures. They gave me some great pointers that we will be working on to get her to eat jar and table foods again. Meanwhile they also noticed her low tone in her legs thats why she falls so much but she doesn't catch herself most of the time she falls like a tree she has low tone in her arms and trunk also. They are setting her up for Physical Therapy to help her build up those muscles! Today she has made a great improvement and took 2 jars of food. One this morning she ate it with rice cereal mixed in for a little texture and one this evening. She loved every bite of it! What a relief this is....So glad to see her eating again! We have started her weaning of the Keppra HOORAY....about time. So far she seems a little irritated but is taking it rather well. Her Neuro says it will take only about 2 weeks to be completely weaned off of it. Next comes the Klonopin it will take a little longer. That will just leave us with Zonegran and Topamax. That is where we will stay unless the seizures get worse again. I will be posting some pics of her digging into her cake this weekend sometime, as her party is tomorrow. I can't wait to see what she does!

Our little Water Baby.... She loves to take baths and splashes water everywhere! ;-0

Happy 1st Birthday, Cameran!

Things are going great right now. She is all smiles and seems to be so Happy all the time! Last week was very difficult for her and us, as she seemed to struggle with the upped dosage of her Topamax. But things have calmed down and are back to normal and her nose is clearing up. She still has the occasional spasm/seizure every other day and sometimes a few in a day but they are so hard to detect. They are very noticable if she is in your lap but if she is up playing and walking around they are much harder to detect.

It has been 6 months now since our world got flipped upside when we got handed the news of her diagnosis. We still have found no cause or reason to her Infantile Spasms but I beleive we have come to terms with that, as it has been a constant worry of "What If's". But we can't live our lifes that way, as there may never be an answer. We just want her to be happy and she seems to be doing a great job there. We love to see her smile and show off those cute little pearls and every once in awhile hear a little laugh! She is such a precious little angel and I thank the Lord every day for her and her Big Brother Caleb, they both are so wonderful and just makes the days seem so easy! Cameran seems to show more and more intrest in her Bubby everyday and he eats up the attention he loves to have her follow him around like a caboose(well sometimes)! Thank you all for your support it makes it so much easier when we have all of you behind us! Happy Birthday Cameran may you continue to fill us with all that JOY that the Lord has given you! You are such a blessed little girl and we fill richly blessed to have you and Caleb(Mommy and Daddy's little loves)! We love you!!!

Things seem to be settling down!

Camerans blood test came back noraml and what a relief that is. She is doing much better and seems to be happier. She is still having the occasional head drop every other day but it is such an improvement. She goes Feb. 8th for her 1 year check-up where she will be receiving her vaccinations we are just praying for the best and that she has no seizure reactions to them like before. She also starts with OT on the 9th to help with her eating! Wish us Luck..... Oh and Happy 1st Birthday to our sweet Baby Girl.... We love you! She will trun the Big 1 on Feb, 7th!

This past week as I mentioned Cameran has just been having a rough time with the recently upped dosage of Topamax. It took a number on her as we seen her become increasingly more Irritable to crying non stop and losing her balance from walking which wasn't helping things as it frusterated her to no end. As of last night things seem to have started settling down. Her walking got much better and she started smiling again the same is going on this morning. She still has the runny nose but we will see if more time with the Clarinex Syrup will help any! We spoke with the Neuro last night where he told us there would be no weaning of her meds until her nose was better since an "illness" can lower the threshold for seizures. Thats probably what we have been seeing but she has shown no temp or other syptoms besides the heavy breathing that started this past week. So he has requested a Basic Chemistry (blood work)to be drawn today to make sure things are ok if so that would rule out Acidosis. We hope to see things continue to get well for her as her mommy and daddy are both anxious to get her off some of these meds. He told us that if we wanted we could knock her Topamax back down a notch for a couple of weeks until her nose got better if we wanted to. But we don't want to go through this whole upped process again with the effects she has already been through! So we are staying put until things settle down. I'll post again when they get us in for the blood test which had to be requested by the Neuro and the paper wasn't sent in yet so the nurse is supposedly taking care of that. So I will be calling in a while to see if its been set up yet!