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!