Tuesday, February 3, 2009

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!

20 comments:

Mamá Terapeuta said...

Well, I'm kind of afraid to talk to you after reading this, but I was going to say the same thing that person number 1 said... The seizures them selves do not cause more harm, they do not cause new brain damage. Circumstances around them might do.

Probably you wont believe me, but there it is. I hope you find something better to believe that all the negative things most of the doctors say. You do not deserve to live under their 'fear' paradigm.

Melanie said...

I have thought about Mama Terapeuta's comment. The seizures themselves do not damage the brain so to speak, but in all the literature, and in the past experience we have had with these types of seizures (infantile spasms), I have seen the regression that has happens in my own son.

I do appreciate your comment,and I agree that some doctors judge and give negative outlooks- but on the other hand we do not have a doctor that gives us "negative" things, in fact he speaks very highly of Daniel to many of his patients as an example of -not to give up hope. I don't fear that my doctor doesn't know what he is talking about as he has studied IS,and West Syndrome, written books and taught other doctors about it. I fully believe that we are making the right decision to continue on with the treatment that he has given us, I may not like some of the side effect that come along with it, and I am praying that we have a happy ending. Daniel's conditions are odd and difficult to handle as there are not a lot of children out there with his mix of diagnoses.Sometimes we have to go with our gut feeling on what is right for him, and we make educated decisions & pray that we have made the right choices. I would love to not give my son medicines every day, but to me medicating him to stop the seizures is my way of attempting to save him from losing his skills..which has happened before. So perhaps the seizures themselves do not cause "new" brain damage but they do cause the regression. The regression itself is enough to make me say they cause damage. If the seizures weren't happening, Daniel wouldn't be regressing. So to me, seizures are damaging my son more than if he wasn't having any.

I am hoping we get past this bump in the road soon and can continue on with Daniel's normal routines and showing people what he can overcome.

Ellen said...

OK, you are clearly freaked, gripped with fear, worried sick. I know how that feels. I also know--and you're realizing this--that Daniel can sense that. So, try, Melanie, try to focus on Daniel in the here and now, the good stuff he's doing, his sweetness and cuteness. Trust that the medications are going to stave off seizures. Try not to worry about those what-ifs. Do what you can today. Stay in the TODAY.

I know it is easy to say this and much harder to do, but as someone who spent so much time worried sick about her child, I realized that in the end all the fretting didn't do anything, and that it wasn't helpful for Max. So, just try....

Melanie said...

Thanks Ellen-

Visualize this:

Melanie taking deep breathes of air and exhaling slowly...."we can do this, we've done it before, and Daniel is always a trooper!"

deep breath - in through the nose, out through the mouth....slow and steady! :)

Justinich Family said...

Well, it sounds like you got answers to your questions and a lot of knowledge and understanding of what the seizures are that Daniel is having. Evan has what are called subclinical seizures, which basically means he has seizures while sleeping. He was probably having them for a long time before his first acknowledged seizure in Jan '08. Now he seems to be adding a new behavior with the seizures each time he has one. I hate seizures and it is so scary to deal with them sometimes. I have not seen any regression in Evan because of his seizures but his neuro said that all of the activity going on in his brain could be hendering his development, especially speech since most of the activity was coming from the left side of the brain. So I think I will agree that seizures can cause problems in development. I have a friend whose son said words such as Dada and then had a prolonged seizure(basically a status seizure) and lost the ability to say the word. It is so frustrating and heartbreaking to deal with new diagnosis or problems that the kids develop. I think all the time "Can Evan catch a break?" I am here if you need to talk. And I know that you will get through this, it just seems hard to be going down the road again. Hope the next EEG brings good results.
Stacy

MeghatronsMom said...

I am so sorry you are going through this. Hope they get the Sz under control. I am praying for you & your family & am here for you. {{{HUGS}}}

Mamá Terapeuta said...

Melanie, I'm glad you are starting to feel more comfortable and secure about this. I will shut up then :) But please keep in mind that there are other alternatives, other ways to look and understand seizures than the medical view.

From my point of view, the fact that ABR will slow down now because of the meds, is a big reason to don´t medicate. ALso, doctors saw 'regression' after my daughters status, but I found out after that it wasn't a neurological issue, it was symptoms of kidney failures because of the f***ing meds (called liver flaps) and they stop when we reduced them. But doctors don't see this... Also I wonder, have you always increase or start medication after the IS? They can be caussing the apparent regression...

Anyway, as I said I will shut up now. Most of all, you need peace of mind now an I'm glad you are starting to sound much better.

Cjengo said...

I am sorry you are living with this. We live with seizures on a daily basis. It amazes me how they have just become a part of our daily routine. It does suck, and it is hard to watch! Jude's smile went away when he started having audible seizures, and when we administered topamax. So I believe the seizures can cause regression. Hang in there if you can, and vent when you want!

Bird said...

Hey, Mel. I understand, of course, that IS is it's own beast and you have every right to be scared. Here's what I'm wondering? If Daniel has no hyps, and no outward signs, could these be absence seizures? You say that the doc is pretty much an expert when it comes to IS. Is it possible that he sees them even when they're not there? Especially when he's got a patient who has repeatedly had IS? It's just something to consider.

AS for the medicines. . . well, we take medicine and it works for us. That doesn't mean that it's for everyone, but I'm comfortable with the decisions we've made and that's all that matters.

tara @ kidz said...

Oh my heck that comment almost made me die laughing. I cannot believe someone would be so uninformed and yet so full of themselves. I love your response - suck it! Oh, I've wanted to say that to so many people!

Anonymous said...

remember to look for the positive in the situation- dont dwell on the negative that will only pull you down a road of dispair and depression. enjoy what you have and take it one day at a time- one happy day at a time! <3 love C

Mrs Furious said...

I'm just jumping over from my blog.
While my daughter has a very different set of medical circumstances (complex partial status eplilepticus) I can very much relate to a lot of what you wrote. Nothing is more frightening than not knowing what is happening/or when it is happening/ or why it is happening and what effects it can have on your child. I am really impressed with your tenacity in getting your point across to your doctors. You are an excellent advocate for your son.

Anonymous said...

TAKEN DIRECTLY FROM EPILEPSY ONTARIO WEBSITE:

Although the exact mechanism is unclear, it is believed that IS is associated with major brain developments that occur at around four to six months of age. During this period, the infant's brain is often restructuring its neurons to allow higher cognitive functions. There will be many chemical messengers present in the brain to orchestrate this development. As a result, certain brains that are diseased or sensitive to these neuro-chemical changes may be more susceptible to seizures or abnormal neuron discharges during this time. Isolated epileptic seizures have not been shown to harm the neurons directly, but they could affect how the neurons connect to each other, expression of ion channels, and microelement influx into the cell. These effects, if prolonged, can cause structural and functional neuronal damage. Infants that suffer IS, if left untreated, have a higher risk of developmental delay

Anonymous said...

SO IN MY BOOK, THAT IS DAMAGE. THESE TYPE OF SEIZURES NEED TO BE CONTROLLED. THE WEBSITE ALSO STATES THAT THE FIRST LINE OF THERAPY IS VIGABATRIN.

Keri said...

You're absolutely right! It is a difficult road to travel, I've been there under different circumstances, and it's not easy by any means. Especially when you're talking about *your* child. So, if you need to scream, yell, rant, vent, you go right ahead. I'm listening.

laila said...

Hey sweetie just want to let you know I'm praying for your beautiful boy!!! Dr. C is the best when it comes to IS there isn't a better place or doc he can see and we live so close to him and your such an amazing mommy and those things in itself are a blessing for Daniel.......hugs and prayers sweetie!!!

Midwest Mommy said...

I am not sure what to say but that I think you are an incredibly strong woman and Daniel is so very fortunate to have you as his mother. Coming from a former teachers standpoint I love how passionate you are for helping your son and fighting for him. Not all parents of special needs children are like you. I am praying for you, Daniel and your family.
I can't believe some of the things people have said to you. You are the one who knows Daniel the best and I would believe you over what "the books" say.

Jonathan said...

I'm totally jumping on this comment wagon late...and should probably just keep my thoughts to myself...but WTH...

The best neurologists in the world CANNOT agree on whether or not the seizures do damage...and Dr. Chugani who is esentially an IS rock star neuro falls into the category of believing that the constant assualt on our little guys brains does indeed cause damage. In the spirit of honestly have a pessi(mistic) streak ...but I gotta say I roll with the rock star on this.

How can a developing brain...under constant (my son has up to 100 visable seizures daily...add 4 unseen for each seen...and that's pretty much his whole entire day)not suffer damage?

It's easy to slip into negetivity when you're living in IS-ville without a doubt. Buuuuut...realism is often mistaken for negetivity. They are not the same thing. I passionately believe I can be realistic about the sadness that Trevy's future may include...but at the same time cling to the hope that he'll overcome. And continue fighting for him to be a miracle kid.

And at the end of the day...I think our kids are all given to us specifically for a reason. They need to very individual approach each of us can bring to them. And what's right for one...is not always right for the other...both special needs...IS...and otherwise...

Anyway...

there's my peace...*smile*

...danielle

C said...

Melanie, I can't believe you let those people go on walking around after comments like that. Most of the time I'm pretty good with letting the crap roll off my back, but so help me, I think I might deck someone who just threw that right on out there... (But then I'd have to work up sleep deprivation as a self-defense and my kids need me where I am, soooo, scratch that.)

Hugs to you and yours.

Sander said...

I kind of know what your going through. My 12 month old niece was diagnosed with Epilepsy on the 3 of this month. She had her first seizure after having her 6 month vaccinations, and has steadily had at least one very 2 months or so. In December she was put on Kepra and she went form having one every month or so to having at least 1-2 a week! Well my sister took her down to U of M for a second opinion, they think there might be a birth defect, but it's so small that they can't find anything on the MRI's. So they just gave her a floater diagnosis of Epilepsy. We are praying that it's not something worse, but whenever she has one I always think of Daniel and how resilient and what a strong young man he is. I will definitely be keeping you, Daniel and the rest of your family in my thoughts and prayers.