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Well as some may no from my last post we are in the process of getting rid of the Ketogenic Diet and we are HAPPY to say everything has gone great! Cameran still remains seizure free here at another 4 week mark! I am trying so hard to stay on the Positive side but I cant help but wonder if these things will ever peek back in on us! I am patiently waiting for the 4.5 week mark, some of you have been following Camerans site for a while now know that a little over a year ago we made it 4.5 weeks with no seizures only for them to return again! I am so praying that it will not happen again.

Why is it that during these seizure free times a mother is still living in fear of what tomorrow may hold? This should be a joyus occasion and although I am extatic about her moving forward I just cant help but wonder what if! What if we had tried this med sooner, what if we would have never done the worst medicine ever ACTH...I just feel like so much time has been wasted. It took almost 2 years for her to be rid of those seizures! But why? So many questions for such a rare diagnosis!

I guess the nerves will settle in time! And speaking of time man has Cameran ever put her development in to high gear in just 4 weeks time! This girl is ready and willing to learn! Still no babbling or talking but her signing has greatly improved! I dont know if my baby girl will ever talk but just watching her sign to me is such a moving moment. Sometimes she just taps her legs, touches her toes, waves her arms in the air for my attention but the point is, she IS trying to get my attention!

Last week during a Therapy visit her teacher had her shaking her head yes when we asked her if she wanted more bite! It was so great to see her do something new. I just wish these next few months would fly by so we can get her off another med and see how quick she picks up things then! I'm sure it's hard to think being so heavily medicated. But what a trooper this girl is I'm so proud of her of giving it her all when she is so wiped out! You're a BRAVE little girl Cami and we hope and pray that all your Wishes and Dreams come true!

She goes to see the Neurologist this Friday and it will begin with another EEG to see what progress she has made! I CAN NOT WAIT!!!!!!





Her new thing is cutting those BIG ol' brown eyes at you! Its hilarious...













Oh Cameran Cameran, What are we to do with you? She really knows how to make the Therapist work. It takes 2 of us to hold her still while she gets strapped into this thing, only for her to wiggle her way out of it! She is fast! Not to mention that she will not hold onto the handle bars like she is suppose to do. And dont even think about trying to hold her hands on there because she will SCREAM! She does NOT like her hands to be held!!!!

Follow your heart...

And lets just say that mine is telling me that the Ketogenic diet is not working! I have had all I can take of this diet, it is being kicked to the curb. We have been giving her little extra of the diet food here and there to see what would happen and you guessed it everything was fine. So this weekend we decided to give her some thin crust pizza, goldfish and some milk. All where fine no bad results yet. She hasnt been in ketosis for about a week! So I would say the diet is probably NOT what is keeping the seizures away. Which we are all pretty sure its the recently added Depakote.



I have not discussed me giving her extras or anything with the Dr..... which I hear some of you gasping but hey I'm tired of playing the waiting game 3 months here 6 months there. I'm tired of watching my baby girl starve, she is constatnly hungry and I have mentioned this quite often to the Dietician and nothing has been done. So lack of communication in that whole area just made me want to quit.



Not sure what the consequences will be if I do it on by own. Is it something that has to be weaned like a med or what? My biggest things is giving her the sweets which I have NOT done yet. I'll be e-mailing the Neuro here in a minute and let him no what I'm doing. But its time for us to take charge for once. Dont get me wrong I love our Neuro I just hate waiting when I know in my heart that it is not working! I mean I did however follow his request and kept raising her Depakote level until it reached 500mg even though she was seizure free on the 1st pill 125mg. Cant a mom have a say so sometime, you know when enough is enough!



I will however have to wait yet another 2 months before we can even think about taking away another med. Uggggghhhhhh.....I just would love to know how much she could really learn if she was just on 1 med for once in her life!!!!



Sorry to vent but gosh I really needed to get that out...Just a mom looking out for her baby girl!

Ok now own to something funny see pic below:


Ok this was so funny to me may not to some others...But this is pure talent right here! A girl who can suck her thumb and yet pick her nose with that very same hand all at the same time! I about fell over when she started doing this this weekend dont know why she started doing it, its funny but I hate that she is doing it. I mean Caleb in his whole 5.5 years of life has never not once picked his nose. So I guess it was just destiny that I would have one lil picker....LOL! I'm sure some of you parents know what I mean!

Trying to figure things out!

My girl is trying so hard to figure things out! She is increasingly becoming more aware of her surroundings.


This has become one of Camerans favorite toys. We hear this thing go off all day long. It came with bendy twisty animals which she shows no intrest in right now she just likes the sounds this thing gives off. It also moves when you push on the front of it.



She was trying to ride this thing, it was so funny!



All Aboard!


Lets go for a ride



Here she is chewing on it, she is teething so bad!



We are working on getting Cameran to roll, throw or even kick the ball. Somedays are better than others one day we had her trying to throw it and actually saying ball well "Aww" ;) But it was very repetitive but she has not done it again since! But she is just doing great! She was so happy on this play date!



She loves to chew on and hit the ball



Of course everything goes straight to her mouth!


I love this game



Cameran with Mrs Christy! Lets play ball Cameran

Who's that girl in the mirror....

Mirror....Mirror on the wall, Who's the sweetest girl of them all?


This past Tuesday, Camerans teacher Mrs. Christy brought a mirror for her to play with. Her reaction was just the cutest, she was nothing but smiles! Before when we would try to get her to look at herself I guess it was too much stimulation for her because she would look away! I love these pictures!!!



Cameran is doing just fantastic! Still no seizures in almost 3 weeks and its been a great 3 at that! She is just coming more and more "awake" if you will. I'm sure once we get her off a few of the other meds she will be a new kid!






Where the baby go?






Hugs




Giving herself kisses!


More lovins....Thats a sweet baby mommy!



Seeing herself and touching her face in the mirror.....I love that Baby!

Theres a 1st time for everything!

Guess what I have been up to???



This was a wondeful accomplishment for Cameran! We have really been working with her trying to get her to hold onto the swing while its moving. I was in tears of joy watching my girl sit still, swing and hold onto it all by herself for 5 minutes! That is HUUUUUUUUUUUGE for her!


Look mom....One hand!






Is everyone watching.....LOOK what I can do!


"Mommy, Whats Cameran doing" "How did she do that by herself, she is getting big now huh?"





Cameran still continues to be seizure free! It will be 2 weeks this Saturday! We are so excited to watch her learn new things!


WAY TO GO CAMI, we are so proud of you!

Great Reults from Depakote!

Great news, ever since starting the Depakote last Thursday Cameran has become seizure free. It will be a week Tomorrow since she has had one. We hope and pray that they are outta here.
She is on 250mg right now they still are wanting us to raise it to 500mg. Not sure why, guess they want to make sure they don't come back! Which I don't want that either but I also don't want her over medicated again. We don't want to relive that whole episode back in October 06' of Ataxia!



If things stay stable they have talked about either re-moving the Keppra or the diet. We will see when the date approaches but that is 3-6 months away. We just need Cameran to stay stable for a while. We know for a fact that the Klonopin is working we learned that earlier this year when they tried to remove it and the seizures would not come back down they climbed up into the 70's. The Keppra will probably be my first choice as well as theirs. Just because they aren't to sure what the diet is doing. Its a possibility that the Keto diet got rid of her IS and their is a possibility that its not doing anything. Hard to tell, since she went S/F when we started it for 3 days and then the new kind approached. And now they are all gone but only because we added the Depakote! Hard choices but we have time to think about it.



Right now she is still scheduled for another EEG in May so we will see what is read.

Started Depakote!

Ok well we did not want to start a new med but the new seziures got even worse with her arms and legs shaking during them. So Thursday night we added 125mg of Depakote, we are to go up on it every 3-5 days. But right now things have settled so we are going to see about holding out on upping it for the time being. Seizure Free all day today. So 1 day and counting.....

Thats all for now just wanted to give a quick update. I'll be posting some Easter Pics and our vacation pics tomorrow I hope so check back soon!

Generealized Epilepsy!

The results are in, Cameran now has Generalized Epilepsy, the Infantile Spasms are gone. No more Hypsarrythmia and she hasnt had anymore head drops in over a week. This is great news that she finally outgrew it but not before these others took over. These new spells only happen maybe 2 or 3 times a day, last night they where even worse with her arms coming up and eyes rolling but her ARMS where doing a jerk motion.




The seizures are coming from her Frontal Lobes. He says these kind are much easier to control he is giving the diet till Monday per our request and if these seizures dont stop by then they will start her on a new med either Depakote or Lamictal. All other meds will remain the same until the new med gets settled in then he said he would remove the Keppra but not the Klonopin since it seems to be working. The diet I'm not sure where it lays???




I've pulled up some info on the Generalized Epilepsy so I will be putting a direct link to it on the sidebar if you are interested in reading more on it. A little of what I read is that it can fall into diffrent catagories like Infantile Spasms does. Idiopathic( in Camerans case) meaning their is no cause found and Symptomatic meaning their is a found reason for the seizures.
Under the generalized epilepsy their is different characteristics of seizures such as starring spells, tonics(stiffing-which Cameran does with her arms and sometimes her legs), atonic (weakness, she has had this with her IS) and grandmal seizures. It does say on one site that it is possible for them to outgrow them around teenage years, again I think it just depends on the individual. He says she probably has something microscopic in her frontal lobes causing her seizures its just not visible to a MRI. But said there is nothing they could do as far as surgery goes in that part of the brain.






We just hope and pray that she can maybe start developing a little faster now. I know seziures in general can hold you back but maybe now that the I.S. is out the door maybe we can finally gain some ground.