Sigh of Relief!

Imagine this:

Sitting down at your computer and opening up an email that the subject line says
Re: Daniel S.

Do you feel dread too?! I did!

Opening it and reading this:


Hi
Good news! Everything looks good. EEG - no epileptic activity. Background waves a little slow - that's because of the syndrome - doesn't worry us at all. And both VEP and ERG are normal!
Let me know if you need anything else.
Kathy

As my daughter would say "Hells yeah!" Me I just sat there and re read it about 5 times, cried and then got up and did the happy dance! It you're not sure what the happy dance is, click here!

Yesterday we went to the hospital got all these tests done and Daniel did not like them one bit. I actually broke down and cried in front of everyone during the second test because he was so upset and they had to give him medication to relax him. Hell I'd be upset too if I was strapped to a stretcher and my arms taped down not being able to move for over an hour. Plus he was overheating from being wrapped up and taped down and screaming. Just got to me this time, just how shitty it is that he has to go through this crap. I know there are other children out there that have to go through far worse then we do. And my heart aches for you, it really truly does.

This was Daniel's 3rd clean EEG since he was on ACTH. This means we can now start to wean Daniel off his seizure medication and the only meds he will be on is for drooling and constipation. Which if I can start to get him to eat things like prunes and such, we will be off that too.

So, 6 weeks from now...Daniel will be off Vigabatrin (hopefully for good!) NO MORE INFANTILE SPASMS. Now please realize that I know we are not completely out of the woods because with his brain malformation (CBPS) seizures will ALWAYS be a great possibility. I know this. But for right now......they are frickin' gone!!

This also means that we can start back up on the TES therapy, the TENS therapy, and the VitalStim therapy! I will hopefully in a few months have a little body who has a stronger trunk, who can swallow better than before, and who will be more alert and aware because he is mostly drug free.

On another note: Daniel started doing swim therapy and he isn't screaming like he was a month ago when we first tried and had to stop because it wasn't productive!! I'll post pictures later of that one. I have to get his therapists permission ;)

And we're UP UP UP!!!

First:

Happy Birthday Little Miss Katie down under in Australia!!!

Second:

Today Daniel went to see Dr. Chugani (his neurologist) for his first appointment since being off ACTH. And wahoooooooo, (have I mentioned before I LOVE going to see Dr. Chugani, he makes me walk away feeling that my child is just a typical child) he says Daniel is just doing great, and that we are going to start to wean him off of the Zonegran medication that he is one for seizures. Which will leave Daniel still on the Vigabatrin (anti-seizure meds) and the Robinul (for drooling, caused by the PMG).

This is a good thing, weaning the meds, but I will be honest with you. I AM SO NERVOUS!! Daniel was originally one just one anti seizure medicine for 1 1/2 yrs (vigabatrin) and it controlled the IS seizures. Then for whatever reason they came back and we added the Zonegran. This didnt' stop the seizures and that is when we decided that we'd do the ACTH (successful!). So because his EEG came back clear and the Zonegran didn't really do anything in the first place Dr. Chugani said to start Daniel on the wean. Which we will start to do this weekend and then he will be completely off that by the end of November. IT IS SO NERVEWRAKING! and I am so torn. Yes I want him off the med, no I don't want to mess with anything because he is seizure free right now! Why mess with a good thing?!?!?!

Then in 3 months we go back and we'll get another EEG. And if it comes back clean again, we will begin weaning the Vigabatrin. The thought of this itself gives me a horrible stomach ache! NO antiseizure medicine at all!?!?! ARE THEY NUTS!?!?! But hey Dr. Chugani hasn't steered me wrong yet.

Today Daddy came along to our therapy sessions and got to see all the wonderful progress Daniel has been making. In fact............Daniel took such pride in Dad being there that he even showed off quite a bit. He did laps in the hallway walking with the posture walker. He is such a show off!! He was so proud of himself. Its Awesome! (there's my favorite word again! I've got to find something else to use pretty soon!)

Pretty soon I'll just break out into cheer:

"A"

"W"
"E"

"S, O, M,E"

AWESOME, AWESOME.....TOTALLY! RAH!

Beginning of Week Two -ACTH

Well I may have spoke too soon about no side effects.

Let me tell you a little about what sleep deprivation does to a person of my age.

1. blurred vision
2. decreased mental activity
3. headaches
4. memory loss
5. memory loss.....
6. irritability
7. slurred and/or non sensible speech
8. nausea
9. clinical depression
10. dark circles under the eyes
11. yawning

Those are to name just a few. That is what mine and Lonnie's days are.

Now Daniel, that is another issue....we have the energizer bunny over here. The energizer bunny on steroids. To give you a little clue as to what we are going through.

1. mood swings...One minute we are laughing, the next we have the biggest boo-boo lip known to man kind
2. Food....if he sees it he wants it. Not in a minute, not when its cooked or warmed up. But NOW
3. Oh you want me to do that? Well guess what......I AM NOT GOING TOO.
4. Don't sit me down. You hold me on your left hip so I can rest my sweet head on your shoulder....NO DIDN'T YOU HEAR ME??? I said YOUR LEFT HIP, what is wrong with you?? And don't you DARE think about sitting down. I want you to stand up and sway back and forth continuously for the next 4 hours. GOT IT??!?!
5. Sleep? What is that? give me a 30 second nap and BANG, I'm all set to go again. What are you waiting for start swaying......to the left........to the right......left, there you go, you got it!
6. Ah and a little bit of "Roid Rage" as Daddy calls it. We are into biting whoevers shoulder we are closest too.........and those baby chompers hurt!

Ah, so that is how are nights and our days seem to be going because two days ago I jinxed us and said at most everything was good. (Yes I'm slapping myself right now and banging my head on the keyboard!)

So far we don't see too much of a weight gain, only about 2 lbs since last week. Blood Pressure is 104/96 with arm flailing (first time it was done today it was 90/62 when he was sitting on my lap.) And he is still probably the only kid I know on ACTH that will smile!