Tuesday, September 05, 2006


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!!!!!


Kelsey Celeste said...

Those pics are ADORABLE!!!!! She is soo precious and we are praying that this med. works!!! We love you Cameran!!!
Love, Tasha and Kelsey

Kelly said...

As far as meds go, I think the ACTH and the IViG are the most expensive... the IViG was about 5,000 a dose! And since we had to be at the hospital for the infusion, every time we were there, it cost about 7,500 a month, every month!

Thank God for health insurance!

melissa said...

Hi Cutie pie.. Thank you for you and mommy coming to visit hailee.

Has your neuro considered you for a VNS to help your seizures? hailee has one, and it has dramatically helped her seizures, but im not sure if it is used on infantile spasms.

We couldnt do the ACTH shots hailee had to many issues, and i didnt want to deal with all the bloating...

We did love the Monthly IVIG tretments though, she was at her healthiest when receiving those....

We will come back latter to see how your doing..
love Melissa and hailee