Weird seizure week!

Camerans seziures have been all over the place this past week, going up and down! Her seizures have been staying in the 18-27 range and having one day of 33 and then back down to 19 then 11. Its just crazy how they are on different days with no rhyme or reason to it all.

Well since the seizures weren't changing her Neuro decide to go ahead and continue with the weaning of her Vigabtrin that we had started before and up her Topamax. We just saw the peak of 33 seizures about 4 days into the wean then it settled back out weird how it does that everytime we wean one. We always get one high peak day then it settles back out. So we are going very slow on the wean, down half a pack every week to make sure she tolerates it well. Right now she is on 1/2 pack 2xs a day. We are up to 200mg of Topamax right now it really seemed to help yesterday when she had just 11. We hope and pray that they stay down.

As far as her BP goes it has been staying in the same area this week it was 100/60. Last week it was 100/58 so pretty much the same and no worries in that area. Her glueclose has been great this week it was 85 and last week it was 116. Weight is the same from last week 28.1 pounds which was suprising since she is so chubby. It must just be feeling in all the places that wasn't chubby as she is very round like a little butter ball, so squishy! I love those round chubby tub cheeks its adorable. Cameran really cracks me up when she eats. As you can tell in some of these pictures that she eats with her eyes closed. I guess she is trying to savor every bite, I had to give her a snack just while she waited for supper to cook she was hitting my legs and fussing for food. She just can't get enough food or milk. She drinks roughly 60-70 ounces of milk a day and eats three main meals and a snack in between those meals.

Here's Caleb rinsing Cam off, she loves the water and he loves to dump it on her, she doesn't mind it a bit. In fact if she hears the bath tub turn on she will go to the door and start banging on it and trying to twist the door knob saying dadadadada! Thats her word for everything right now! She looks so BIG here.

Cameran goes back to the Neuro on October 13th. Until then he says we will give the ACTH another week and if no change we will begin the wean, that will take about a month. Its been 4 weeks now and we have seen no change in her seizures. But we are still hoping!

Photos of our Big Pooh Bear!!!!

Here's some pics of our "Big Pooh Bear"! Before and During ACTH treatments!

Cameran 1 month before ACTH 18 months old! Weighing in at 22 pounds and a few ounces.

3 days into ACTH

1.5 Weeks into ACTH and gettin chubby! Now weighs 25 pounds
I love my food! Cameran is so serious about meal time. She crams everything in her mouth like she hasn't eaten all day.Her arms have always been so skinny and has never had much strength in them. Well that is no longer the story, she is finally getting some meat on those bones which we love and she now has a tremendous amount of strength!

Gotta love that sweet angelic face of hers!

2 weeks into ACTH and weighing in at 27.5 pounds and is very happy and babbling lots. And heres the picture from today:

Cameran 2.5 weeks into ACTH and weighing 28.1 pounds BP 100/48 The seizures have gotten worse for some reason. They climbed up to 28 yesterday and today about 18 we were so hoping this was the med but its not looking like it. We are fixing to continue the weaning of her Vigabtrin and see what happens and possibly knock the Topamax up one more notch. (In the picture below Cameran was looking for food in her chair the girl just can't get enough!)We pray that something works very soon! Poor baby girl has been such a trooper through all the pokes she gets everyday and weekly glucose. Mommy sure wishes she could take her place. We are so proud of you Pooh Bear you are so brave. We love you! Ok now I will put 2 picks side by side 1 from before and todays picture!

How's ACTH going?

Cameran is doing very well on the ACTH. She is really putting on the weight, since starting the ACTH 2 weeks ago she has managed to gain 4 pounds being 2 pounds a week. You can definelty tell it in her chubby tub face!




Her new nickname is "TUBBA TUB" she shakes her head no every time I call her that. Its so cute to finally see some meat on her! She weighed 22.15 when we started and she is now up to 27.5


As for the seizures they are still in the same range about 4-12 a day. They went up a little today and theres a reason for it. We kind of panicked a little this morning when we noticed we where out of her 1" needles and had to switch over to the 5/8ths they prescribed for us which as many know is a much shorter needle. Well her Neuro had RX(prescribed) some numbing cream yesterday to help out with the pain the girl has been going through (which I will explain next) anyways we put the cream on her right leg and waited 30 minutes and started the shot. Well Jason had a really tough time getting the needle in, he says the right leg seems alot tougher for some odd reason. Anyways when he put the needle in he did the norm and after pulling it out we noticed it was real puffy you could actually see the liquid sitting under her skin....yes, it didn't go into the muscle like its suppose to. I paged her Neuro and he called right back and said it sounded like it went subque(sp?) meaning just under the skin. Said it wouldn't hurt her and said that we could give it to her again if we wanted. We decided not to. The numbing cream worked fantastic she barely flinched when he did it. Amazing though since he had to poke her 3 times before the needle would go in.

Which brings us to our 2nd problem we have been having. We can not get the shot in her Right leg for some reason he has to poke it several times and it still won't go in so we have just been giving it in her left leg. Well I contacted her Neuro yesterday and he instructed us not to do that. He said it needed to be alternated and that if we couldn't get it in that leg we would have to do it in her arms or bottom. Jason has been scared of her right leg ever since this weekend when he tried the right leg again and she started screaming with the worst pain sound and started shaking then followed 2 seizures in a row. It has been so hard seeing her go through this we just can't believe we are having problems with one leg and not the other. Thank goodness for this numbing cream wish they would have done that in the 1st place.

As far as her blood pressure goes its been pretty good. Yesterday when I took her it was 100/50 which he said was in the 90% for her height. He said you definelty don't want it going over that. I wonder if it has anything to do with her gaining so much weight?? I'm going to have it done again tomorrow at her daddys work they have the pediatric cuff thats needed to get an accurate reading for her. I still haven't got her gluecose results back yet, last week it was 128.
Cameran will be staying on the ACTH at the current dose for another 2 weeks. She will be seeing the Neuro in 2 weeks also. Until then we have upped her Topamax a half notch to see if this will help with her exsisting few that she is having!

ACTH

Well its Cameran is now on the ACTH, the med we always said we would never try. The hospital squeezed her in Thursday afternoon to get her started and me and daddy where both anxious to get the ball rolling! Of course we got there at 3:30 and didn't get the 1st shot until 8:30pm I really thought they would try to get it to her earlier than that. Her Neuro always insist on giving new meds in the morn so you have all day to watch them. Anyways the girls 1st shot was a breeze she barely let out a worthy cry after getting such a harsh shot into the thigh muscle. She did great and was so brave!!! Her blood pressure did great all night. She did have a slight increase once but that was to be expected they said.


Come Friday morning the Neuro came in had a talk with us and said they wanted to give the next shot around 10:00 to show daddy how to do it. Well he did great and gave his 1st shot with barely a whimper out of Cameran. Where was mommy??? Over in the corner about to be sick....Needles are not my thing! After all the directions on how to administer and such we where already on our way out of the hospital. We where there about 24 hours came home Friday afternoon.
We have to go back this week to pick up the rest of her medicine as everyone was out! And who knew such a small med would cost so much a 30 day supply was $7,000.00 Thank goodness for insurance!
We took Cameran today to have her blood pressure checked at her PCP and everything was great it was like 90 something over 40 something (can't remember, it's been a long harsh day). Anywho the girl has already gained 2 pounds!! She is literaly eating us out of house and home. She just can't get enough but I guess thats what a steroid will do to you. They also checked her glucose and it was 128 its suppose to be 60-110 but she had just eaten an hour prior they didn't say it had to be a fasting glucose. You would think that I would have thought of that since I had gestational diabetes....DUH! But he thought it was good to just have eaten so no need to retest with a fasting unless Neuro wants it that way! I hope not the girl might have a fit if I deprive her of her food : - )
I wish you could see her! For someone who just a week ago was only taking milk for her meals its just unreal to see her go nuts over an empty plate! She starts crying and banging on her tray if I can't get it too her quick enough. And who would have thought she would keep signing "more" when she wanted it. She has even started making the mmmmmmm noise after every bite! Haven't heard that in a year!
As far as the seizures go......Well wish I could say they where a thing of the past but they aren't just yet. We have seen a big decrease in them in the past few days but they climbed up again today to 11. I just wish these darn things would just stop!!!! But we still have a few weeks to go before they decide if they will continue at the current dosage for a few extra weeks or start the wean. We just hope and pray that this is the med as it is our 8th med that we have tried!!!!!


On another note Cameran will finally start Physical Therapy again on the 13th of this month. Her school has had a time trying to find a PT therapist since the other one left and 6 months later we where still waiting. She has alot of catching up to do but atleast she has her inserts now and walks lots better.
I'm going to try and keep this updated but since starting ACTH her moods have been terrible! She has been crying and fussing all day long and is VERY VERY VERY VERY VERY irritable. She would not let me put her down today and if I did she would just sit and cry, totaly out of her personality. My mind feels like a train wreck, I need a huge break!!!!! Just have to remind myself its only temporary! Felt sorry for her poor teachers today she gave them a wrestling match today instead of a class. They spent more time holding her down than anything. Cameran kept shaking her head no everytime they gave her a toy.
They would put it in her hand and she would drop it and then push all the toys off the tray into the floor. I've never seen her this way! She has always enjoyed her toys even though she didn't know what to do with them and would only show intrest for 5 seconds. This med just has her way out of her norm! They said seeing her today reminded them of how she acted in the very beginning of all this mess. So I hope we don't go backwards atleast she is babbling again!!!!!