Thursday, March 26, 2009

One Step Forward, Two...Aw Hell, You Know The Rest

I don't have a whole lot to write about today regarding Bennett. Ive been so completely drained of late thinking, worrying, fretting, watching, hoping, wishing, trying to make sure I eat which I can't seem to do lately, etc. and I don't want to just be a broken record today so I will give a brief update for those that need the info and that'll be it for now.

March 5th, a Thursday, he started ACTH to attempt to control his seizures. During the first week of the two injections a day his seizures lessened a little. Instead of 3-4 clusters of 24-32 seizures per day, it shortened to about 1-2 clusters of as little as 8 as many as 20 seizures per day. After that first week, he went down to half the dose, and went the seizure activity increased again. That was last Friday when the half-dose started.

So as of yesterday, the neurologist has decided to go back to the stronger dose, twice a day, and see where that takes us. More of the super-expensive drug ACTH is on its way and we'll start administering the new dosage (same as week 1 though a fraction higher than that) as soon as it gets here, which we believe to be today.

So that's the news. Check out this photo, taken on Monday. Hardly looks like a severely ill child at all does he?


Therein lies just some of the Madness of all of this. I'm trying to get a short video using my camera (since I can't figure out how to convert a short vid off of any of my home DVD's from my camcorder) of the episodes to show the difference, though not sure I will show it or not...might be good just because any and all info on the net about this stuff is good...might make it easier for the next parent to find information when their time comes.

Might be good to see the contrast for people that might not understand. Though even seeing how he behaves during a seizure cluster won't show you why I can't eat...it isn't necessarily the episodes themselves, though my heart breaks and I weep during every one I see...it's the damage that is being done to his life and his brain and his future and his hopes for a normal life that I see played out before my eyes every day without having any power to influence the outcome.

That's the latest, we'll see how it goes.

15 comments:

  1. He looks so happy bless his heart! It is amazing how kids can find a way to smile in the worst shit storms. I wish us adults were more like that.

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  3. I just posted a comment and I was accidentally logged in with my mom's account... that's the reason for the deleted comment.

    Anyway, what I said was, how confident are the doctors with their diagnosis? If it is what they say it is, how common is the disorder? Just curious. It seems as though they don't know a lot about it seeing as they're "trying" these treatment methods.

    How is Carter throughout these episodes. I can't imagine the anguish he's experiencing when he sees his little brother having a seizure. I'm sure it rips everyone's heart out each and every time it happens. Best of luck to you and the family, my friend.

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  4. Was wondering who that poster was and why she called me 'friend'.

    Anyway...the doctors are 100% sure of the diagnosis of IS, all the criteria are there. They also are fairly sure they have seen a cortical dysplasia in his brain, but that part is something I would like to get more info on from people with more expertise.

    They are not 100% sure about his treatment, because there is no 100% treatment. IS is such a rare thing, with so many different causes that it is difficult to treat. Best way to put it is that the spasms are like coughing or sneezing or fever, but the root cause of that is your flu virus while the root cause of his IS is not known for sure yet but believed to be Cortical Dysplasia.

    The doctors are going with treatment plans that have worked in the past in other cases that might have had some similarity. ACTH is not experimental, it has been used for years to try and treat IS, as a first line treatment. It just doesn't always work all the time in all cases.

    Sometimes other things work, some times they don't, and it's all over the board. You starting to see the big picture here of why I can't eat and have trouble sleeping without serious drugs?

    Carter is fairly oblivious...the nature of the seizure episodes is not what you might think, which is why I need to shoot a small vid and get it up here. It doesn't occur like a GM seizure or something like that, where he flies around. It's different. You can probably find various videos on YouTube of some Infantile Spasms cases.

    Carter does know though. What troubles him most is not watching Bennett, it's watching his parents cry. That he has a hard time with.

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  5. I love the pictures of Bennett you have chosen to share with us. You’re right; he doesn’t look like a severely ill child. He’s beautiful, Ken! And I love that smile! For his doctors, he’s a patient; for the special needs people, he’s a child with a disability. Don’t let any of them forget that he’s a wonderful little boy first and foremost. That’s what you must defend at all costs: for the providers who work with him and for yourself. Don’t let them focus so much on what’s wrong that they fail to see his strengths. I tell you as one who’s forgotten at times and who is thankful that there have been parents along the way courageous enough to shout, to scream, to rage: this is MY son, who is unique and special and talented. We actually encourage parents to bring pictures of their child in to special ed planning meetings and such....to remind everyone in the room that we’re talking about a real human being and not a label, that a diagnosis does not define a person and cannot limit how high or how far that child will fly.

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  6. Thanks Cecilia...all well put. It is going to be a long journey and I appreciate you being there and providing all this support and advice. Awesome.

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  7. Sheesh...you'd think after over a year into this I'd have some comfort words for the soul. I don't. IS sucks. Any way you slice it.

    That said...there are always little ones who come along & blow up the norm. I'll be praying & hoping that Bennett (who btw is too stinkin' cute!) is one of those kids!

    (((hugs from a mom who gets it)))

    ...danielle

    ps. oh yeah...and why the heck can't I have trouble eating when I'm stressed? Makes me kinda hate you... *wink*

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  8. Yeah Danielle it used to be the opposite, I ate when I was stressed. Lately it just has changed. Not so much that I am not hungry, cause I do get hungry sometimes, it's more like I can't find any joy in food so I just eat a few bites until I don't feel hungry anymore and then I'm done. I sort of just pick at a meal and get bored fast from it.

    It's hard and requires a lot of energy and effort to focus on anything at all really, other than him. I'm sure it will get easier week to week, but it's a struggle for sure.

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  9. Just wanted to introduce myself. I am a father with a son who has I.S.

    My son was dx at two months of age and we have done the ACTH along with a laundry list of others since that time. Today Dawson is a year and a half years old and we will be celebrating one year seizure free in the next coming weeks. He has ZERO developmental delays and is just as normal as any kid you have ever seen. It DOES happen. I wanted to let you know we will be keeping up and praying for your beautiful son.

    I am all to familiar with the pain that the thought process that you are going through right now. Dont lose hope!!

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  10. Dawson...thanks a ton for the post. Can you tell me what actually happened that resulted in your son being seizure free?

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  11. I hate that another family is having to go throught the torture that my family has known since 12/06 when my little Connor was diagnosed. Unfortunately it is a constant rollercoaster of emotions, but you will make it through. You have to fight for your little guy because unfortunately no one else will. I look forward to following your journey. and pray for seizure freedom for Bennett. Take care! Monica (mom of Connor, almost 3, diagnosed with IS at 8 months old)

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  12. Thanks. I have actually read some of Connor's blog, but couldn't find a place on it where I could follow it. Do you have some other thing I am missing as far as being able to become a follower through Blogger?

    Thanks for the kind words and support, is Connor SF or does he still have them?

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  13. We were lucky enough to find the right combo of meds. In our case it was Topamax and Lamictal. The seizures just dwindled down to only a couple a day, then a couple every few days, then none. He is on a very low dose of Topamax right now with plans to have him med free by the time he is two years old. Well be praying

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  14. Sorry, I'm just getting back and getting caught up with you guys. I'll try to post the follower link. I think i had accidentally deleted it one time when i was revamping. Unfortunately, Connor is NOT seizure free. He was diagnosed at 8 months old & will be 3 next Monday, and I can probably count on 2 hands (that may even be a stretch) the number of SF days he has had. We have tried pretty much everything ACTH, lamictal (twice), zonegran, topamax, keppra, ketogenic diet, depakote, klonopin...you name it. We will be starting with our 5th neuro next month (this one will be at Duke). They pretty much all say the same thing "IS is the hardest type to treat...yada yada yada." I don't care if it is the hardest...FIX IT!! Never did I think I would hope my child would be candidate for brain surgery, but that is where we are at. Sucky thing is..he doesn't have a focus so he's not. Sorry to be Sally Downer. Never give up hope although some days it is like eating a shit sandwich buffett(to steal your term...love it!) we go through different emotions daily. I haven't gotten to explore your whole site, but have you guys looked into early intervention yet? With IS he will qualify for an eval. Even if he isn't regressing it's nice to get him into the system incase he starts. Love your blog, especially how you just tell it like it is!

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  15. We have set up some early intervention stuff. He has regressed some with words but he had only just started to learn words so we sort of expected that. Obviously we hope we can get the seizures stopped sooner rather than later to prevent further delays, but you know better than anyone what a battle that can be.

    Maybe going down the surgical path is the one that will yield the best results for him, I don't know.

    My best to Connor...

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