Hmmmmm...
Sooooo...
I've heard through the grapevine today that I haven't been posting enough.
Which is taboo if one aspires to be a BlogStar. It's, like, blogging 101. Keep it short. And keep it often.
Lucky me. I have no desire to achieve BlogStar status!
I is what I is. And these days that is...
EXHAUSTED!
And trying really...really...really...really...hard. To find my balance again. I actually found the time to exercise once this week! Which is not even close to often enough. But still. Its something!
I was going for twice this week.
Buuuuut...
that was thrown off when Dr. Neuro ordered a 48 hour EEG. ASAP. Because Trevor had two seizures. Not big bad scary seizures. Nope.
More heart shattering than that. His seizure looked like the ghost of what we thought we left in a Detroit path lab...coming back to haunt us.
Yes. I saw a spasm. A spasm. Not a cluster of spasms. Which is positive. Except my heart wasn't prepared to see that again. After so long. When I saw his arms fly upward...my arms went weak. And whatever I was holding (for the life of me I can't remember what) clattered to the floor. The gasp that wrenched from my heart through my lips was so filled with emotion that Toby is still talking about it. I scared him. But I couldn't help it. Trevor scared me.
Especially when several handfuls of minutes later I saw a head drop too.
I immediately sent emails to both Dr. Neuro and Rockstar. They both emailed back to increase his Dilantin and get an EEG.
So increase his Dilantin we did. And I'm happy to report I've not noticed any other seizure-y things. See...we were trying to wean his Dilantin per doctors orders. And now...in the hindsight zone...I see that some of his "odd behaviours" were red flags.
For the sake of other seizure parents...
The off things I noticed were very intangible. And so slight and explainable in other ways. He just seemed more foggy. Less focused. More fidgety. Sleep interruption. Not as babble-y.
The morning after we increased his Dilantin...those behaviors were mostly gone. And he spent a solid 15 minutes playing with one toy. Which just further confirmed (because of course I doubted myself) that I saw what I thought I saw.
Which is why I have agreed to live through the hell that is a 48 hour in-patient EEG. This week. I would MUCH rather be Christmas shopping. I loathe EEGs. Especially the overnight kind. And this will be my first solo mission. Jonathan just can't miss another day of work. So...I'll be there ALL day long by myself. He'll come for the overnight shift. And then play it all again the next morning.
See...
this is why I'm EXHAUSTED! Just thinking about it makes me want to curl up in a ball and hibernate.
And yes...of course I asked. If he could relapse Infantile Spasms. Dr. Rockstar never answered. And I didn't have the energy to email and ask if it was an oversight...or if he couldn't promise me that. I don't think it's possible. But still...
Anyway...
Now that the downer news is out of the way. And I'm whipping out a post to satisfy whoever needs more info. I need to add...
Trevor is continuing to thrive!
Do you know I have spent the past year and a half trying to teach him one single body part? In the weeks since surgery he has learned FIVE! And it's quite possible if you stop by for a visit...he'll yank your ear and tweak your nose. Just because he can!
24 comments:
Been offline, this is the first post I read. I am SO sorry. I wish there was something better to say or do. And I won;t patronize you and say maybe it wasn't. Your mommy heart knows. I hope the Dilantin increase is all that is necessary. Remember, it takes the brain a while to FORGET how to seize. That's what it knows. Hopefully more time on the Dilantin will help the brain forget. I'll be thinking of you and sending positive vibes.
I know, Jen. I feel like both of our lives have been so crazy busy lately! I think we should have a girls get-away or something...
Thanks for the love and support.
Now that I haven't seen anything else in a few days...my heart is feeling a little better. And I emailed Meghan (Jackson's mom) and ironically when Jackson's seizures resurfaced it was similiar. Spasm and head drop. Increasing his meds did the trick...I'm hoping the same for Trev. And of course...I'm SO thankful to have a neuro who takes Trevor's care seriously! I was trying to talk her INTO waiting on the EEG! She said no way!
Anyway...
Almost done shopping?
...d
Oh dear....that stinks. And yeah, your mommy heart is right. It feels like a kick in the gut...
Sending hugs for you and Trevy....
sheila
{{{HUGS}}} It took 9 months for us to see the awful head drops. Ryan had grown quite a bit and his Depakote level was too low. It took us a few months to get things back under control. I'm glad to hear you had a quick fix. I don't know anything about Dilantin. Can he stay on it long term? Is there a reason you were weaning it? I hope you never see another one again!
Erin M.
Ok, you got through to me. When we go up on Monday I'll press for it earlier rather than later.
And for the record, I too hope that the EEG reveals nothing serious and the increase on the Dilantin is all that you need to do.
Coincidentally, all the stuff I mentioned to you about Bennett started just around the end of Vigabatrin. Didn't connect the two until I read this. But he can't stay on that shit, no way...gotta be something else if he indeed needs a second medication.
Anyway...that's all I got. All my hopes.
Progress even in the midst of seizure activity is still progress! You are such a strong mommy, and I am so happy that you are still celebrating his amazing achievements! Trevy is a rockstar....and so are you.
the title of the post was enough to make me hold my breath. my heart is sad for what you saw, especially after how long this journey has been for you all. so glad to know that your docs are all over it. trevy has come so far, so everyone needs to be right on target.
i bet you are so amazed and overjoyed to see the progress that trevy has made in such a short time. yay! it is so good to have those big moments, and hope...oh so hope that they will spook the ghost that you saw.
huge hugs, and love, and prayers,
jody
I gasped (and cried) for you too. It is heartbreaking when you leave the seizures in a lab and then a few months later you see one. We know now that Emmas surgery was not completely successful but I count it as a success because
(1) a lot less seizures
(2) she kissed me for the first time ever last week
(3) she can climb now
(4) she says one more word
(5) she is happy
Success is being able to live your life. Success is being able to learn. Success is being happy. It's not just the EEG and the MRI that defines success. It is what is in the hearts of Danielle, Jonathan, Bristel, Toby and of course Trevor. EEGs are horrible but they help the doctor see what kind of seizure they are dealing with and to come up with the right drug for that seizure type. Be strong my friend. Have hope. Trevor has given you much cause for hope.
My heart sank to read that post. I so hope the EEG doesn't show anything 'interesting' at all!
And that the increase in drugs works.
And that progress continues and he gets to learn even more body parts to poke & tweak in hospital.
Love & best wishes, KT xxx
Hugs headed your way. I so understand. :)
And for what it's worth, even though Julia had spasms up until her surgery many doctors, including Dr. C, classified them as "epileptic spasms"...semantics, if you ask me, but they were not considered IS. But I was told that kids are at risk of IS returning up until age 5 or so. So it's very possible that what you are seeing is not IS. And yay for all the new things he is doing! I'm so hoping that he just needs the meds for a little while longer and all will be well.
I gasped in shock and then sighed when I read that Trevy had a spasm. My heart goes out to you. I'm praying that he's just not ready to be weaned off the dilantin and that the EEG doesn't show anything to worry about. {hugs}
CRAP!!! I was thinking worse, but trying to clean the potty mouth up. I know what a kick in the gut this was for me to read so I can't begin to imagine what it felt like for you. I HATE seizures!!! Praying the Dilantin increase is the fix he needs. I too hate EEGs...it's the part of the trip I'm dreading MOST. Ok, i'm going to go and cry in the corner now. If you have yours this week, call me & we can moan & groan together. {{{BIG hugs}}}
I read this AFTER I sent you a message on fb....I am SO, SO, SO sorry. My heart dropped for you. UUUGGGHHHH!!!!!!! come on!!! Why can't he (and all of you) catch a break???? I will never understand it, but there is a bigger picture. What day are you heading to the hospital? I will send up extra prayers for ya....
sorry Danielle. I really am.
Marcia
I sank when I read Trevor and seizures in the same sentence...I can only imagine what you must be feeling. Obviously I have no experience with surgery and seizures, but do know these are the most stubborn monsters ever!
How fun to see him growing into himself, and blossoming...that is a great sign, whatever is going on in his brain, that those stubborn spasms are NOT wreaking havoc
anymore! Paul and I play the "body part game" too (oohh, i realize that sounds weird...i meant...we play the body part game with Hudson!!! :)
..."this is your hand, eyes, nose, feet..." I wonder if he will ever know...blaaahhh, HATE SEIZURES!!!!!
Hey...proud of you that you are trying to take time for YOU...know how nearly impossible that is with 3...and we both have boy-girl-boy...all the same ages...SO I KNOW!!! :)
Will be praying for a calm EEG!
XOXO Deb
I sank when I read Trevor and seizures in the same sentence...I can only imagine what you must be feeling. Obviously I have no experience with surgery and seizures, but do know these are the most stubborn monsters ever!
How fun to see him growing into himself, and blossoming...that is a great sign, whatever is going on in his brain, that those stubborn spasms are NOT wreaking havoc
anymore! Paul and I play the "body part game" too (oohh, i realize that sounds weird...i meant...we play the body part game with Hudson!!! :)
..."this is your hand, eyes, nose, feet..." I wonder if he will ever know...blaaahhh, HATE SEIZURES!!!!!
Hey...proud of you that you are trying to take time for YOU...know how nearly impossible that is with 3...and we both have boy-girl-boy...all the same ages...SO I KNOW!!! :)
Will be praying for a calm EEG!
XOXO Deb
praying 4 u as always...hope the EEG is quick & painless! ;0)
xoxox,
sharon
Oh man Danielle... UGH. I am so sorry... As a mom watching her baby like a hawk in fear of seeing a spasm, head drop, eye roll, etc. I know what it must feel like to see one when you are hoping they are GONE.
I am glad you haven't seen any more, and praying that increasing the med will keep them away and that the EEG is not super stressful for you or Trevvy and that it shows he is still doing AWESOME>
Hang in there... there are lots of us thinking about you guys and praying for you.
Hugs,
E
Thanks for all the love everybody. Guess I haven't lost my mo-jo afterall. :)
Erin...I'm not really sure why Dr. C was opposed to staying on Dilantin long term. I do know the only reason why we used it in the first place is because it comes IV form. I know it has some scary side effects...liver failure...weird hair growth...body toxicity. And it's difficult to get the levels right. That said...I know there are people who are on it long term. Soooo...who knows.
Anyway...I'll post the EEG deets once I have them...
Love ya'll!
...danielle
Glad to hear the seizures are better so far with the increase. It took us about 4 weeks to get the Depakote to a therapeutic level, but we haven't seen any of those head drops or spasm like seizures since. Now if we could just get the recent complex partials under control!!! Trevy will in my prayers for his EEG and that his seizures will be no more. Awesome news on knowing his body parts! That is huge! ;-)
I'll bet we would all line up around the block if Trevor opened a booth to yank ears and tweak noses. Like the old kissing boothes of the 40's. Get good rest Danielle. Trevor needs you to rest well. Best wishes to your family.
CB
(((HUGS)))
Hang in there. We moved from IS to a more typical myoclonic seizures at around 2 years of age (although they look the same!), they are very different animals. The EEG will be the key... it will be worth it for your own peace of mind!
I love what CB above says. Bang on!
Many, many hugs to you and your little family Danielle. Focus on your family and yourself...never mind this blogstar bit. Whatever!
My heart sank at the beginning of this post, but by the end reading about Trevy's progression, I couldn't help the smile from spreading from ear to ear. He's an amazing little man...pure miracle!
Danielle,
I haven't read the blog in a while but have definitely been thinking about all of you. So saddened to read this but hopeful the EEG will show good news and your mommy instincts are awesome and look how many others you have helped by blogging this to look for their instincts. Sinead's comment was so awesome and really so true for us all, no matter what our struggles are :) Love you and pray you get some much needed rest soon.....
OK....So...Deep breath....
Get through this next round of testing and you can re-group....The only way I can identify with what you must have felt would be the times that Colby starts a new Rx and then goes maybe 7-10 days w/out seizures....Then, when I see it, I can LITERALLY FEEL my heart drop...It is a HORRIBLE, HORRIBLE feeling....I'll bet even SO MUCH MORE so after the surgery.....
They will be able to determine what to do next....Meds tweaking can be frustrating, but you will get there....There are SO MANY they can try...And I, too, know of folks who have been on Dialntin for YEARS with NO problem and great results!
I know you are about to explode with joy seeing these new bits of progress....PRAISE THE LORD!!! Trevor is really moving right along...I know, in the midst of all the heartache & concern over seeing "The Beast" again, you are revelling in his recent accomplishments....And they will continue!!!
Take care and keep us informed!
Cyndi
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