3 Guesses

You've got 3 guesses.

Mr. Fed Ex came to our door today delivering TWO boxes...

...Addressed to Mr. Daniel...

Figured it out yet??

Inside these boxes,my friends,
is my little boys voice.
His thoughts...
his feelings...
his words.

And I cannot wait to listen.

Big Boy!!

We have been trying (half hearted or less) to potty train Daniel. Every morning before school about 20 minutes after he wakes up, I've been putting him on his potty seat. Then again at school the teacher puts him on at around 10:30. Sometimes he'll go pee-pee at school. Well EVERY morning when I put him on the potty he pees, and I make a big production out of it. I sing a special song that the whole family knows (and will sing to him!) and he gets to pick out a sticker. This is fun for him.

Well this morning I put him on the potty and he tinkled so I started to pick him up to get him dressed and he started to really fuss. Well just because he is non verbal doesn't mean he can't get his point across! So I promptly figured out he wanted to sit back on the potty, so I put him back and figured he still had to pee.....which he did, but he also went #2. Now, I don't generally celebrate when someone goes to the bathroom but the fact that he made a point to let me know he wasn't finished, and he went poopy on the potty.......THIS IS A HUGE DEAL!!!
He's gone pooh on the potty before but always because I could tell he had to go and I put him there. He let me know.....in so many words!

So he got TWO stickers. Yes two because I was so proud of him, and I kept telling him so all day long. He probably was thinking, "Sheesh, I just sat on the potty. Are we going to throw a party every time for Pete's sake!!"

I know you guys are probably shaking your heads and saying....."geez o'peas, this girl needs a life!"
Well I will further embarrass myself and tell you I don't have much excitement in my life because I actually got a little teary eyed afterwards!!! LOL

Current Sit-chew-a-tion (Seizure Control)

Looking for the positives of our current situation

• There are no hyps current on the EEG
• We seem to have caught it early
  
• There has been no regression yet
• He doesn't seem any worse off, he isn't grumpy or out of sorts
• We have a good doctor who has treated Daniel for this before with success
• Our support from family and outside is great
• His teacher at school has read up on IS and is watching him closely and gives me daily updates.
• He is still progressing with things he is currently learning, which is awesome. is doing really well with his colors/matching/sorting. Can follow directions and understands everything you tell him.
  

Here is the current action plan for treatment

• In our 3rd week of Vigabatrin 500 mg 2x a day
  
• Scheduling another 24 hr. VMR within the next 1-2 weeks
• If VMR from February is better than January we will continue with Vigabatrin
• If VMR from February is not better we will schedule to start taking 6 wk course of ACTH within the week
• If ACTH is started we will start preliminary testing/blood work and have a hospital stay for 2 days to make sure he is handling medication OK.

Current Stats

• 3 1/2 yr old
• 42" tall (with shoes)
• 36 lbs
• cute as a button and loves to cuddle!
• social butterfly
  

Current Medications/Side Effects

• Vigabatrin (anti-seizure) 500 mg twice a day -1/20/09 First two weeks: Sleeping more. Seems to be in a constant state of laziness/drowsiness. Second week of full dose: Mood seems to be much better, not as lazy. Still taking a longer nap.
• Robinul (drooling) 1mg twice a day - side effect - constipation
  
• Prevacid (reflux) 15 mg meltable tablet - one time a day - none
  
• Miralax (constipation) one cap a day- side effect - pooping!
  

West Syndrome, Infantile Spasms, Epileptic Spasms....WTF?

Sigh. Alright last night I typed up a post and kept it in draft mode. I wasn't sure I could explain things well enough, and without the emotions or negativity I was feeling. So this morning I deleted it and will give bullets of what we learned/did without the emotions/negativity.

• West Syndrome, Infantile Spasms and Epileptic Spasms are all the same thing. All do the same amount of harm. All suck. This is how it was broken down for me. WS typically has these characteristics: spasms that come in clusters, hyppsarrthmia, regression. Infantile Spasms DO NOT have to have all three, but can have a mixture of them. For instance you can still have IS without having hyppsarrthmia. You can have Infantile Spasms on the EEG but not see them outwardly. Epileptic Spasms are the same thing as Infantile Spasms but because when the person is over a certain age, they now call it Epileptic Spasms. All suck. All have the same potential of robbing your child of what skills he has.
• A VMR is basically two separate things run at the same time- the EEG, and the video. The EEG is run through a detection program on a computer. If certain criteria is seen, it is then flagged for the doctor of the EEG department. Dr. A. This doctor is not our neurologist, he just reads the reports and writes them up. Dr. A is who showed me the video of what he classified as Epileptic Spasms (IS/WS). Based off what he showed me I came home to research.
• There are types of seizures that can be induced by certain things, ie: flashing lights.
• As I stated in a prior post, the movement Dr. A showed me and called ES were something that Daniel has ALWAYS done. So to prove that I knew what I was talking about and to prove to Dr. A and Dr. C that the report was wrong, we induced this "spasm" and video taped it to show them yesterday. I had all the past reports and did my comparisons/said my whole spiel, showed my video, fought my fight. He listened to everything and let me say what I wanted, and when he first watched the video that we made, he said "sure looks like a spasms". I explained that watch longer, listen to the sound, you can hear me tell you that we are bringing balloons into the room, when Daniel will see them he will do this movement repeatedly, and yes they look like spasms, but we are controlling it, we start it and the minute we remove the balloons Daniel is fine, no more movements. He agreed...if we could make it happen and control it like that it was NOT a seizure. Looks like it, but is not. What we learned, don't judge a book by its cover. So I had a moment of glory. I proved Dr. A wrong.
• Dr C. listened to me, listened to my explanation then proceeded to say in the nicest way possible; "regardless of what the video says, the EEG doesn't lie. We are not seeing correlation with the times you pressed the button so no, those aren't seizures, but he is indeed having epileptic spasms in clusters but they are just not manifesting in an outward fashion for us to see. As much as I think he wanted to tell me they weren't seizures, he did it in the nicest way possible. And he listened to me. He answered all my questions, explained our options, and gave me the time. I might not have liked what he said, but he took the time to explain in a way that I could understand, wrap my arms around. So I don't like what he has to say, but I trust him in the fact that he knows what he is doing and he is looking out for my child. He cares.

So after a long doctor visit, we are still continuing with the 500mg two times a day of the Vigabatrin, we are scheduled for another 24 hour VMR within a week or so, if there is still seizure activity we will do the next course of treatment. That being ACTH, which we did last time to get the seizures under control and stop possible regression.

Feel like I've been kicked in the stomach? Yes repeatedly. Does it suck? Most definitely.
Am I terrified? You bet.

I say I don't want people to look at my son differently because of his diagnosis. I want people to judge Daniel for who he is, not what papers say about him. But I look at him differently too, I look at him with some much love, such an aching heart, scared. I look at his eyes and I see there is life in them, and I see that he knows I love him, that I believe in him. I don't want him to see the fear in my eyes when he does odd movements, when he breathes a little different. But I can't help feeling the fear. I don't want to lose Daniel. Not mentally, not physically, I want him not to lose his abilities that he has fought for. And it terrifies me that I have no control over this. NONE. All I can do it love him, but sometimes that doesn't feel like its enough to protect him. I am suppose to protect him and how can I protect him from something I can't see?

So even though I won a small victory we still have a big one to fight. And it sucks. There are different paths we can take, all of them are scary and leading us down roads I don't want to be on. I want to yell to whoever will listen "HEY, we're lost, we took a wrong turn and shouldn't be in this place, we don't belong, this is not the journey we signed up for!"

Hello, is anyone listening? He does not want or deserve to have this bumpy crappy ass-ed pothole filled road to travel.

OK so I lied, I didn't post without the emotions or the negativity. So shoot me! I tried!
and since I already screwed up the post with emotions for the second time, I might as well top it off:

So to the person who said to me:
"Modern medical literature informs us that there is no evidence of additional brain damage that even severe seizures would bring."

Talk to the specialist that people travel from all around the world to see, I'll send you his phone number and email address. Or better yet, talk to the parents of the children who have IS and who have regressed? Is that not damage enough?

To the person who said to me:
I fully understand your concerns about Daniel's seizures, however lets look at the situation logically, you have to overcome the irrational fear of seizures and understand what they are about."

Yeah, well SUCK IT!

Remembering Januarys

Wow, can you believe January is already over?
Talk about time flyin'.

I decided to look back in the January's of the years past since Daniel.

January 2009 : Unfortunately we got bad news this month that Daniel is having seizures again. Infantile Spasms. Not what we wanted to hear.

January 2008: Looked back and almost 1 year to the date of our EEG in 2009 was the one in 2008.
Oddly enough I still have this happening to me too! And yes this still happens to Daniel.


January 2007: This year we were frantically planning the two fundraisers we were having for Daniel. Busy times. We had some really great support. We even made it to the big time and Rob over at Schuyler's Monster gave us a little shout. We even made it to Mr. "Fancy Pants" side bar with a link to our site. All before he became the Mr. Fancy Pants that he is now! :)
We are still grateful for all the hits he generated for us.

January 2006: Daniel was diagnosed with Infantile Spasms and we were fighting to get them under control. We switches neurologists and started going to the best of the best for Infantile Spasms. Daniel was also diagnosed with his brain malformation called CBPS (Congenital Bilateral Perisylvian Syndrome) also known as BPP (Bilateral Perisylvian Polymicrogyria).

January 2005: Daniel was still being made! Sometime during the first trimester is when Daniel's brain didn't develop properly.

________________________________________________

Here is a photo of a little boy and his new crown. Meet Jack. Isn't he a cutie?!?

Hard Pill to Swallow

If you've been following the post this past couple of weeks, you know that Daniel has been re-diagnosed with Infantile Spasms.

Being in SHOCK is an understatement.
Being in denial? Perhaps.
Grasping at straws? You bet.
Researching again? Hours upon hours!

Trying to come out of the fog I've been in since I heard the nurse practitioner say Infantile Spasms.
I just lay in bed at night and something doesn't feel right this time. The other two times Daniel had the seizures, I was like ok, I see them I understand. Not so much this time. There are too many things that just don't fit this time around. Now mind you, some of you will probably read this and say to yourself, "that poor girl, she just needs to come to the reality that Daniel is having seizures, and let it go, move on." And to that I say you might be right, but until I can get this nagging feeling to go away, I can't put it to bed yet.

This is what is odd (in my book)

• no new outward appearance of clusters/seizures
• the movement that we did push the video button on in the EEG we have pushed on 4 different EEG's previously and we were told they WERE NOT seizures.
• there is no hyppsarrythmia
• there seems to be no regression, only slow progress which is typical for Daniel
  
• there are two parts to the VMR. The actual EEG and then the video recording. We found out that only the EEG is looked at through a computer program then a doctor reviews if anything is found through that detection. They only review the video if the parents push the button when they see a funny movement. That being said, it is my understanding that from the review of the EEG, there were spikes but they did NOT see seizures. Only upon review of the video (where we hit the button) did the doctor who read the report call it IS. because of the 'movement' only. Not completely based off the EEG. (see report under Interictal Findings).
• Also note under Clinical Findings (meaning the video) the report reads: These spasms showed minimal EEG correlation or sometimes the EEG correlation was obscured by EMG activity. Some spasms showed diffuse spike wave activity followed by attenuation. We would not localize the seizure onset..

To me this means; had they been looking at just the EEG they would not have seen a seizure. and that when the movements of the video happened there was little or NO correlation with the EEG. Now mind you yes Daniel is doing a movement, but one that he has ALWAYS done. So if this is indeed a seizure, he was never really seizure free EVER. and if it is Infantile Spasms- I can induce this seizure. I can tell you when and why Daniel does the movement. I can make it happen and I can stop it instantly. If this is a seizure, why am I am to do that?

I know grasping at straws, and its all confusing for people to read. I an not saying Daniel isn't having seizrues of some kind, or he has a high potential. We have always know this because of his brain malformation he will never have an absolutely perfect EEG, its impossible. He has spikes, which means there is potential for seizure activity. There are no hypps. When he was having the "seizure" (odd movement) it didn't cooralate with the EEG. I can induce it. Seizures?? Maybe, but I need more to think that it is infantile spasms again.

But who am I? I am not a doctor and I am new to this (3 yrs only) seizure stuff. I have researched a ton, but again I am not a doctor and I don't pretend to be one. But it is a gut feeling that i have, and I am around him pretty much all the time. I am his mom, and yeah probably grasping at straws.

But wouldn't you too?

We have an appointment on Tuesday with the neuro. Then I will point out all my thoughts and he'll probably think I'm nuts....

All It Takes

Sometimes all it takes during the day is for someone to acknowledge that I am not up to par, give me a hug and walk away. Enough said, enough done....and I immediately feel better, I don't feel so alone.

Sometimes as I watch Daniel to see if there is any odd movements, he'll catch me. All he needs to do is smile at me or snuggle into my shoulder....and I immediately feel better, I know he'll be ok.

Sometimes all it takes is a couple seconds for the hug, the smile, the snuggles/nuzzles...and the day is better.

Thats all it takes......
But somedays we must pull out the big guns and get a whacked out bedhead hair do to make me giggle!!