Tuesday, July 7, 2009

Marty! We Have to Go Back!

Back to the future? No...back to Cleveland Clinic! We have our dates set up, tests scheduled and it's time to get ready to get ready. More on that later.

So...it's been a while since I have updated on Bennett, which was as much for me as it was for anybody else. I needed a break. I did however note that all of last week I was having a harder time coping. I guess these writings are more therapeutic than I thought.

Last Wednesday for example, I threw not one but two objects in anger. Hard. This is not typical behavior for me, and I just had a rage build-up unlike anything I had experienced in a while. Didn't write about it because...well I said I was going to have a Bennett-Free week in the blog.

Thursday, which is the day I take Bennett to the Occupational Therapist in the mornings, was awful. We got there, and he was listless and uninspired, and I feared something was coming. Something was.

In the middle of his session, he had a cluster of over 160 seizures and the cluster lasted around 17 minutes. It was brutal. But I have to hand it to his therapist, Audra, whom I absolutely respect and adore. She sat right there with me, helping us through it, and she was clearly, clearly moved by the experience.

She's amazing...almost ready to give birth to her own child and yet still working at this OT center being as active as can be. She really engages with Bennett (when he is open to it and not too tired or pre-seizure time) and he loves going there. These are a couple of photos of an earlier session.

This month she will be taking maternity leave...we'll miss her and wish her luck and then we'll have a different Occupational Therapist for a while.

So what's new in Bennett's world? Well, he is having pretty much the same amount of seizures as before, there has been no change in that. On Friday, July 3rd, we decided to increase his dosage of Vigabatrin to 2000 mg, his max does, and see if it had any effect. I did some research about how much of the drug is actually released in the urine of patients and decided I was cool with the 2000 mg because of how much of the drug he was actually NOT getting.

As of this writing, not really seeing a very significant decrease in seizures. The plan is to keep him on the 2000 for 5-7 days, then pull back to 1500 and begin weaning after meeting with Dr. Lachhwani. Some other drug, probably Lamictal, will be added when we go back to Cleveland Clinic.

Which brings me back to the whole reason for the update as I mentioned in the opening paragraph. The big news of the week last week was that we did receive all the info we were supposed to from Cleveland Clinic, a very comprehensive information packet, we did receive our phone calls and we were scheduled for the multiple day admission to do the long term VEEG and whatever other tests are to be initiated.

Get this, IS Brothers and Sisters, I learned something about their VEEG format. They allow PERIODIC DISCONNECTS from the machine, with leads on of course, to walk about, play a little while and otherwise get some PHYSICAL ACTIVITY into their day.

How cool is THAT shit? I have never had that experience, and yet it makes complete and total sense, and how amazing is it that they are so concerned about having the child more content throughout the day? They know they will get all the data they need over a period of days, and to show that level of concern for patient comfort is...well...comforting to ME as well.

So the date is set, we are to be admitted the morning of July 24th. Yeah...that was a bummer to me too. I do hate the fact that we have to wait until then. It's going to be a long 3 weeks. But at least we have the plan.

Rough night. Seizures at 9PM, seizures at 2AM, then 4AM, then 7AM...that's a first, rapid fire through the night. So yeah um...not sure this Vigabatrin shit is WORKING.


  1. With you on this journey. It's a long and difficult one. I'm sure you must be exhausted today. I can handle anything life throws me if I have had sleep. I find it difficult to concentrate and work without sleep. If the nighttime seizures continue, is there anyone who can help out so you and Jen can get some sleep? As ever, I am filled with emotion for the little boy who is going through this and his big brother. I wish the testing was today so you could move forward. Or I wish the Vigabatrin was helping. It's frustrating that you have to go to so much bother and expense to get the miracle drug and then it makes things worse. With you in spirit.

  2. Awe those nightime seizures suck. Poor baby, and poor Mom and Dad! The OT pics are super cute! And hell yea, that is awesome that you can dis-connect for a while during the EEG! We've had 8 24 hour or longer VEEG's and never have been allowed to do that. That should help.
    Tell Bennett (and Carter too!) that their Chicago friends send lots of hugs and kisses!

    Karen and KC

    btw-there is a new update on KC.

  3. Well,I am probably not telling you anything new but thought I would throw it out there ...we always saw an INCREASE with Zoey as we INCREASED the Vigabatrin.Ultimately this was not the drug for her.Remember vividly seeing more intense clusters and attributed it to increase dosage each and everytime.So,just my two cents ... not that it's worth much I know.Hoping the Cleveland yields answers for sweet Bennett.It's just got to.

  4. Was just catching up here and Dora saw Bennett's pics. She said he is a cute baby...thus, the princess has spoken. Sorry about the rage...I am sure I would be furious as well...every time. Praying for you all and even angry at Bennett's and his family's suffering right now too. This is an unfair monster that does not belong in your or your child's life! You are one heck of a monster slayer thought...

  5. Dude...that rocks that they're letting you disconnect to go for a freaking walk! It's one thing if you child only has a seizure every other month...but with our kids having seizures ALL day long it's not like they'll be missing some vital piece of info! Such a stupid rule!

    Seizure suck, hon. You know I feel that with you.

    Weaning sucks too. I hope it's better for you than it is for us...

    Oh...and as morbid as it sounds...I'm always a little bit happy when a therapist is with us through seizures. Because it is so profoundly moving. And I think it helps give them a truer insight into our little guys lives...what they have to gut through everyday. What we have to gut through everyday. Ya know...



  6. Seems like here is no correct medication for Bennett, so I guess probably surgery is the best bet, and it looks like he'll be a candidate from what you've told us so far.

    Yesterday I was driving and I was thinking about Bennett, and I realized something I had thought before but never really clicked it. When I see a video o Bennett having a seizure, it always reminded me of something, but I never really remembered what it was, and yesterday I saw it in my head. It reminds me of Tickle Me Elmo.

    I'm not saying it to make a joke or anything, it's what it really reminds me of. If I thought the toy was weird before, I know I'll never look at it the same way again.

    160 seizures in 17 minutes, I bet that is excruciating to watch. But I also get that Bennett is tired as hell after it.

    The week you took off, I used to read up on the previous posts, because I had missed a few.

    Glad you guys have an appointment scheduled, and that it seems to be so much more comfortable for Bennett (and you guys) than the previous ones.

    I know this is closer than the last one, but maybe taking support like you did then (Jen's parents) might be a good idea, after all it's a few days, and they'll be grinding days.

  7. That is SO COOL they let Bennett disconnect; even for 15 minutes to take a walk.

    I hope everything goes well in Cleveland.

  8. Sinead:
    What's weird is that nighttime seizures are brand new...hasn't really happened before. Very strange. And since then none in the nighttime.

    I'll have to go check out your update. Yeah disconnection is super cool.

    That's what we've seen, a slight increase since last week, though it is leveling back off again to a 'typical' amount daily.

    Yeah, the rage is something I really can't say I dig...

    I agree on the therapist seeing the seizures. Or anyone that will be spending regular time with our kids. They need to see it to make the connection and relate to it. That's why we do the videos as well I think.

    We want to take the grandparents but they are not available that weekend. We might be stuck totally on our own, and THAT is going to be brutally hard.

    Thanks...I hope it ends up at least leading is in some new direction. That's all I can really hope for I guess.

  9. I have been lacking Internet time due to the whole moving while my daughter is on ACTH thing. But I am sorry to read that you are now having nighttime seizures. I think we have always had them, because for as long as i can remember, hers were every 2.5 to 3 hours when at their worst. Certainly makes a good night's sleep hard.

    I am happy to hear that you have your schedule for the Cleveland Clinic visit. And being able to disconnect from the EEG is definitely a cool thing. Hoping this visit gives you a plan that will get Bennett well. I know how disappointing the repeated med failures are. I am so sorry.

  10. I think disconnecting to regroup and move freely will do wonders for Bennett AND you & Jen. That's awesome.

    I remember the nights when Austin would wake up multiple times having clusters. It's not as frequent but still happens on occasion. It sucks so bad. On the vig, though, Austin was extremely restless (even on Melatonin). And he always has seizures when he wakes up. Has Bennett been more restless than usual? Maybe he's waking up frequently because of the effects of the high dose vig and having clusters then...dunno, just a thought.

    Oh, and we'll be at our hospital on July 24th too. It's a routine EEG and epi visit. I'll be thinking of you guys!

  11. Liz:
    Was wondering what you were up to, figured the move was keeping you busy.

    I think it was a combo of increased Vig, which we have since backed off on, and an oncoming fever, which he now has. Great. And a rash. Super. Doc appt. today to find out, but probably some virus.


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