Friday, July 31, 2009

Need Some Help/Advice

OK, so you know Bennett has these seizures. While they are not like myoclonic-astatic seizures or atonic seizures, those which cause you to fall to the ground suddenly, these IS Clusters can and often do, and even more than they used to now, begin while Bennett is engaged in play, while walking around, doing anything a so-called 'normal' child might do.

But, when these clusters begin now, and he is standing, one of two things will happen. Either the seizures will be so severe he loses his balance and falls, OR he will slam his head into the nearest object, which is OK if the object is a soft pillow. However, if the scrapes across his nose bridge today tell us anything, its that these clusters have a better chance of causing him to bang his head repeatedly into HARD objects.

And usually the edge of a table, which sucks as you can imagine.

Now, unless you are watching every move he makes like a security camera with a tracking ball, you might not notice that he is about to have the cluster until WHAM! his head goes into the object ahead of him or he falls to the ground. If he remains standing, another WHAM! may even occur before you can get at his side and guide him away.

Problem is that you gotta be there, because he loses awareness of self or something, because he isn't able to react to bumping his head the way you would if you ran into the table or object. He might not even register the pain the way we do, so he doesn't or can't pull himself out of the way or get to the floor.

What do I do?

This wasn't part of my Parental Manual, I don't know how to live our lives like this, without ever taking your eye off the boy. When Carter was a toddler, I was watchful, I was cognizant, I was paranoid even, but I could look somewhere else for a few moments without putting my son's face in danger.

Those of you who deal with the drop seizures, what do you do? Or do you really do anything because there is nothing you CAN do? I'd appreciate any advice, any suggestions, from those of you who have been at this a lot longer than I have. I bought some edge guard and am in the process of trying to cushion some areas that I might see as possible problem spots, but what else can I do?

Other than shake my head in guilt and frustration, which I can do very easily now, by the way...

Anyway...Happy Nuggets...I know...Happy Nuggets. Hard to sometimes. Rough day. Rough week. Rough year so far. So let's look at some cute pictures, from some that I loaded into Facebook today. Oh and as a side of my greatest friends IN THE WORLD joined Facebook today. I couldn't be happier about that.


  1. Hey...Wish I had the magic answer...I wrote a post way back in early March about calling Colby "Pillow Boy" because of this same issue....Ever since he fell from a drop seizure while crawling (the way he gets around), I have been PARANOID.....He split his chin wide open and we had to call EMS,etc...Not pretty....

    It wasn't always like this...Just within the last year has he begun to fall with the drops....I CRAVE the days when he would just bow his head with a seizure!!! I Could leisurely leave the room for a minute, or I could let him follow me around the house....NOw he is confined to two rooms...the den and his bedroom....

    Colby REFUSES a helmet...Won't even wear a little ballcap anymore for even a second....Do you think Bennett would be a candidate for one? They make so many different types...And they are making them more lightweight and comfortable than they used to...Or you may have tried that already....

    So all that I have known to do is to pad EVERYTHING! I have my den set up with layers of comforters over the carpet and husband pillows and bed pillows surrounding this area to try and keep him inside (although he loves to crawl away, so I DO have to stay right in the room with him ALL THE TIME.) You should see me running as fast as I can for quick bathroom breaks! I don't hardly cook anymore because I can't leave him long enough for that...Unless I have someone here to watch him for me....(But I'm OK with that...Never enjoyed it that much anyway...) One piece of furniture that I did purchase to take the place of my coffee table was an oblong, covered ottoman...It is real cushy...I have also thought of getting some large beanbags to pile up around him rather than dragging 4 bed pillows in here every day...It would be nice to have some color coordination in my den!

    So, as you can see, I am in the same predicament as you and would love to be able to help....I am thankful for you that you are not a single parent....But nevertheless, it is SO, SO hard...I will anxiously watch for comments here and see if anyone knows anything else to do...

    By the way, (knock on wood) Colby has been doing better with the falling on the Banzel...(I'm probably jinxing him right now)...I know others have had no success with it...Just a thought, though...It is actually formulated FOR drop seizures......

    Wish I could help....


  2. PS: Sorry my comment was so long...I get way too wordy...I was an English major....


  3. First .. those are some seriously cute pictures.Especially the one of the buddies sound asleep.As for the drops into object,the floor,etc magic remedy for those.I think you are doing about as much as you can do.Zoey was not mobile when hers were at the the nastiest stage.Our problem was that we held her ALL the time and there were so many head butts and shoulder slams that we lost count.She did sit in one of those bouncy saucers but that was short lived because who the hell wants to slam their head into those toys all day long.I really have no advice so you may ask way comment?I guess because I care and I so want you and all these kids to get an upper hand on this crappy disorder.I DO truly understand,it's just that I DON'T have the magic answer.Thinking of you hoping for a relatively decent weekend there for you all.

  4. My answer to the drops totally sucks but it the only thing I could think of short of a helmet, or padding everything. Sadly, I like my house to look a certain way and I'm a little OCD about it so I'm not sure I can ever really drop seizure proof all our stuff.

    So my solution is walking wings. I bought them at Target for like 20 bucks. They are made to help kids learn to walk, but I use them to walk around behind Maddie and catch her before she hits the ground. She started becoming afraid to walk alone once the drops started happening so frequently, so she is usually okay wearing them because it makes her feel safer.

    But it means every minute of the day I am either holding her or walking right behind her. Otherwise she is in her highchair, stroller, or a huge pack and play called a Room Squared by Joovy. I would kill to have a better solution (like no more f-ing seizures) but I don't. And honestly, as angry and upset as Maddie gets about the drops, I don't think a helmet would work for us. She would be afraid to walk and keep falling I think. I may try one, but right now she is barely walking anyway because of weakness from the 60 days now on ACTH.

    So I know my solution is not really what you are looking for because I know you don't want to have to be standing behind Bennett all day. But it is the only thing that works for us whenthe drops are happening alot.

  5. This comment has been removed by the author.

  6. LOVE the photos! Bristel has that same blue silky blankie!

    Trevor had a really rough stretch...two months of seizures so intense he was being thrown backwards to the ground or into the walls or from the top of the dining room table he'd climbed onto and if I hadn't been there to catch him who knows what would have happened. Thank God that right's just more one sided balance loss.

    But two things for us. A) I am a stay at home mommy. So my life pretty much revolves around the kids. And I never leave Trevor anywhere alone. I watch him like a hawk. And it's exhausting. But necessary. And B) Trevor seems to know when he's about to cluster. And there a LOTS of ques for me to notice. He'll come to me and touch me...if I'm sitting put his arm on my leg. And he may walk away. But he'll keep coming back over & over. Along with other repetitive picking or figeting with toys - blankets - or his own fingers. Over the past year I have learned to notice these things...because they are a red flag of what is lurking.

    But when he was falling often and hard...we did start to think about getting a helmet. Hated the thought. But ya know. Safety. Although I've heard from other parents that it's not a cure-all. I know they sell corner protectors. Also not a cure-all...but added softness to hard corners could be a good thing?

    I don't know hon.

    But I do know if Bennett is a surgical candidate...and this crap'll help make your decision easier.



  7. Hi Ken, I never dealt with an IS child, but I did deal with several autistic children, and one of them had the habit of slamming his head against walls, and other hard objects. We tried to deprogram that behavior, which is easier said than done, but while that didn't happen he used to wear a helmet. There are children helmets that are padded on the inside and are very good to protect their head, and most have a chin guard too.

    Though this is only a short term solution, I hope you only have a short term problem.

    But you should also remember that a person can't go under full anesthesia if they have bruises. So better be safe than sorry.

  8. Hello. My daugter started having drop seizures just b/4 she turned 2. She will be 5 in December.

    I didn't see the first drop happen, but she cried and cried and her front teeth were chipped and loosened up. Those front teeth eventually became so loose that they fell out a year and a half later and she eventually lost a
    3rd front tooth from another fall.

    When we realized that drop seizures were now in the repetoire, we tried keeping a vigilant eye on her all of the time, but we just couldn't keep that up. We also have a son who is 3 years older, plus, it just wasn't realistic. Keeping watch over her was dominating our lives. We resigned ourselves to a helmet after 2 long months of carrying her and hovering over her. What a relief for all of us, especially her. She fortunately has not fussed once about wearing it. She has no receptive or expressive language, but defintely has personality and cries when she is not happy. She has adapted to the helmet immediately. For anyone with a child that would be fussy to wear it (and I don't blame them), perhaps put it on them for 5 seconds here and there and build up to 10 seconds, to 20 seconds, etc.

    My daughter has worn the soft shell helmet with a full face guard for 2.5 years now. It has saved her life numerous times and has been so liberating for all us, especially her. She has been able to run around and play again. We are in the process of deciding if we are going to have the corpus callosotomy procedure to try to eliminate the drops.

    The helmet is hideous. I have a love-hate relationship with it, but thankfully it is available.

    Now, if I could just help her understand that it's unsafe to stand on the dining table . . .

    I wish strength, courage, and hope to everyone that has to see their child suffering from this sucky disorder.

  9. Well, as the nice commentors have already told you, they make soft helmets for these types of things. They come in different colors and I'm pretty sure your insurance covers it. Ask your neurologist!

  10. Hey Ken,

    Though I don't have an answer to this problem, I wanted to take a minute to let you know that I had thime this morning to catch up with your blog (been far too long). You, Bennett, and the rest of your family is in my thoughts and prayers often, I just don't get much time to do much more than a quick few minutes on facebook at night. Possibly to visit the CMX website as well. That's basically all I do while home here.

    Anyways, all my best with you trying to find the answers. If you ever need anything and I can be of assistance, let me know.


  11. Blankets and duct-tape would be my vote. Delma and I were just telling Dora Diane about not seeing our furniture for the first 3 years of her life. I know you are anxiously awaiting the "verdict" of the board. We are too out here.

  12. Hey Ken,

    Awesome pics. I just wanted to weigh in on the whole helmet thing. KC wore one while he was having drop attacks...I was not a stay at home Mom and could not be there every second. And like others have mentioned, they make soft ones that still do the trick. KC's was cute, and it had space for air to get in so his head didn't get hot. It doesn't fit him anymore, so if you want to try something out before buying/deciding then let me know. I will send you mine.


  13. Besides dealing with IS in general, this has to be the single most difficult part of living our day to day life. As if seizures and developmental delay were not enough, we have to deal with the constant safety hazards as well.

    Yes, a helmet is a quick fix. If Bennett is still only having the IS seizures, I would bet that a helmet would help. Austin's drops though can hit will he's running, and his helmet doesn't protect his chin, so I'm still very cautious even with the helmet. It makes a HUGE difference, but not enough for me to just let him go anywhere anytime. Plus, that was a tough step for us. A helmet was a last resort. Kind of like a new acceptance of what life was like. But, safety won out.

    You'd be amazed at what can be padded too! Even before Austin started having atonics, his clusters were like Bennett's. I have padded everything from his crib, his play yard, his walker, you name it.

    Another thing I did that made a huge difference...I replaced his hard plastic toys with soft ones. That took a lot mentally for me to do. But, I've gradually been adding them back in lately. We also replace our hard wood coffee table with a padded ottoman type table. And create barriers for danger zones.

    Hovering has been one of my biggest issues. When I let go he lets go. But it was impossible to do so until I made his environment a little more seizure friendly.


You Are a Beautiful Blank Page...Do You Have a Great Pencil?

Christmas is over. That sound you hear is my sigh of relief. The tree is not actually down, as the opening image suggests. That was a t...