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!

Tuesday, August 15, 2006

Its Been 1 Year....

It's been 1 year now since Cameran was dx with Infantile Spasms. Although the seizures continue we are just glad its not as many. When they 1st started it was 158 a day and now they are about the 15 range, having climbed up a little more recently from the 5-8 range : (
We recently upped the Vigabtrin another notch so now we are at 750mg 2x daily. I'm not sure if we can go much higher. We where to wean the Klonopin when we where comfortable enough to do so but haven't yet due to the sudden increase. It's not by much but we don't want to rock the boat any.

Cameran has had a really hard past few weeks with bad bumps to her little forehead. One causing her to get 2 black eyes. We have been waiting and waiting for a helmet through therapy as they waited on approval from insurance. So I decided to make a call to them myself and they said they would not cover it. Go figure when you need the insurance they are never there on these such things. The guy had actually told me the reason they want cover it is because you can buy one in the store. I said you have that store name???? Then told him what it was for as if they didn't already know she has seizures......HELLO! You would think they would cover something that would keep her safe. Hard to believe they covered her DAFO'S.
So anyways we had to go ahead and order it ourselves hoping to be reimbersed through Early Intervention. That thing cost $200.00.....OUCH! Well before we got the helmet she took another hard bump from a seizure calling for a trip to the Peditrican. Poor baby girl this thing was huge and very squishy. After a 2 hour visit and an x-ray to her head everything seemed to look ok. They where going to a scan but she didn't pass out, vomit and seemed to be acting fine. Luckily we received the helmet that day!!! She looks so cute in it. Cameran's helmet came from "">

On another note we took her off the Melatonin after finding some links to it and her Gynecomastia. Our peditrician looked at it while we where there last week and it looked fine and said he definelty thinks it was from that med since it can release some hormones. This also just started recently with the starting of this med so kind of hard to not put the 2 together. And believe it or not she has been sleeping great since we took her off of it. Imagine that!
She is still not talking yet a few sounds here and there, kind of like a rambling singing/humming sound. Not really babbling like she was 3 or 4 weeks ago. On a good note she is starting to sign more for More, Please, My Turn and Play. She does these signs great in her speech class but want barely do it for me.....Little Stinker!
Cameran continues to do well with her eating and has gained a pound finally after being 22 pounds for 6 months now. She weighed 23.9 pounds last Thursday! She goes back for her 18 month check-up this week and back to the Neuro on August 25th, so I 'll let you know how it all goes!

Wednesday, August 02, 2006

Some New Things...

Well its official we are finally rid of 1 of her meds the Zonegran. She seems to be doing fine no real changes, seizures are still the same 8-15 range! We are to soon go up on her Vigabtrin. On another note I took her to the Pediatrician on Friday for a knot in her left breast which turned out to be Gynecomastia. Meaning she is developing breast tissue already. Its not a side effect to any of her meds that he knew of and her Neuro said the same. They are looking into it so we will hopefully no more this week.They aren't sure whats causing it, there are test that can be ran to find out so we will just wait and see what they propose.
She is doing great now and is a eating wonderfully, so we are now just on consult only!
Cameran wearing her DAFO's she hates them and when we put them on her she acts like her feet are broke. She wouldn't stand up!


Trying to take them off! Poor thing when we go out she has to wear shoes with them making her shoe size jump up from a 5 to a 7-8 it looks so funny and makes it even harder to walk!
Here they are up close, they are really cute. Pink with little lambs! They do make special shoes so where you can get their actual size shoe so we will be ordering those soon.