Sunday, August 27, 2006

Soon to start ACTH

Well after much debate about ACTH we are going to give it a try. They are looking into putting her into the hospital this Thursday-Saturday to get us started and show us all that needs to be learned. Also just to monitor her. He said she will also be given a med for her belly that she would take daily. Not sure whats that all about maybe the med can upset their little tummys. They will be teaching us how to give her daily shots. He said it will probably be just once a day but not sure of what her dosage would be so it might be twice. This is only for a 4-6 week course from start to weaned.
We have started weaning her Vigabtrin as its not shown to be doing much. She had no change in her seizures since we started it roughly 6 weeks ago. We aren't sure what will happen coming off of it since it might have taken the place of her Zonegran that weaned a couple weeks back. She has had some side effects from Vigabtrin and that with her sleep. She has been taking 3-4 naps a day and it takes us about 2 hours to get her to sleep. Its awful because she cries and wrenches as she is so tired but can't fall asleep. Another reason to get her off of it is of how long it takes it to get here. We are still waiting on her shippment that was sent off over 2 weeks ago from England! We ran out this past week but thankfully her Neuro keeps a large sum in their office. We just pay them back when ours comes in. Its definelty not a med they can just drop instantly! Her seizures have been staying around 12 a day. We hope to have her pretty close to being off of it before we start the ACTH so thats one less med to worry about!
All Cameran's other meds will stay the same while on the ACTH. Why you ask?? Well so we don't get things stirred up, they don't want her seizures to pick up she needs to be stable with her seizures. If the ACTH goes well we will start the weaning of the Klonopin and Keppra and possibly just keep her on the Topamax. So we are praying for the best results. They had recently upped her Topamax twice due to her sudden increase of seizures(18) and she showed not to tolerate the upped dosage at all. She was so out of it barely blinking in starring spells and sleeping all day. Not to mention her appetite has been effected yet again I really hate Topamax. So we had to back down and let things settle. We are still working on getting her to eat again all she will take is her bottle with milk and nibble on a snack occasionally.

As far as the ACTH goes he said they have never had a problem with any of their patients that where put on it. And that she should be fine. He says the side effects usually only occur if you already have that exisiting problem such as heart problems and so on.
Since this is a steroid Cameran will probably gain weight and look like a little sumo : ) Ought to be interesting since she is so tall and skinny. She weighed 23.15 on Friday.
ACTH also lowers their immune systems so we have to keep her away from all Illnesses to keep her safe and out of the hospital. So I guess that makes us home bound for a while or just being extra cautious, lots of hand washing!!!!
We are to hear from the Dr. on Monday on a for sure date. We are looking at this Thursday but they have to make sure they have a room for her so I will update on here as soon as we know something!

What a gorgeous sunset we had Thursday evening. The colors where so beautiful!

1 comment:

Kelly said...

Hey Karen!

Sorry to hear the Vigabatrin didn't help...what a bummer, considering you have to pay out of pocket for that.

Michaela was on a steroid (Prednisone)at one time too, and the belly med is because it can hurt the stomach lining I think. We were put on Zantac, and it kept away any potential problems there.

We were also told about the swelling, but we were also told that her appetite would increase. AND HOW! She was ravenous! BUT! I know we definately helped her not turn into a balloon because along with the steroid, we put her on a low-carb diet. No sugar, or simple carbs. We ate salad for dinner for a long time. Everything was whole grain, and we only used Splenda and the like. This approach worked very well.

There are plenty of children on steroids (cancer kids, mainly), and they really gain BIG TIME from it. Very skinny kids go to very fat, very quickly. But we didn't see such exorbitant weight gain because we did this. Her cheeks got puffy, but that was really the extent of it. I didn't have to buy her bigger clothes or anything.

Oh, and Michaela also had this side effect: hair growth! Like everywhere! So don't freak out if it happens to Cam. Some of it should go away after you're done, if it affects her this way.

Good luck! Keep us posted!