10.26.2010

What the neurologist had to say...

My dad took Pablo to see a neurologist today (thanks Dad!). It turned out to be quite the revealing appointment. To sum it up, the neurologist is pretty convinced that all of Pablo's issues that he's been having (specifically since the end of radiation) are caused from the anti-swelling steroid Decadron that Pablo has been taking on and off since his tumor removal surgery at the end of April of this year.

The problem is that every time Pablo goes off the Decadron, he suffers from different symptoms to which the doctors assume is because of brain swelling so they prescribe Decadron again to deal with the swelling. The neurologist doesn't think Pablo has brain swelling. He doesn't understand how he could have that much brain swelling considering a large mass was removed from his brain so he's got lots of extra space in there now that wasn't there for years while the tumour grew. The MRI that Pablo will have hopefully within the next week should hopefully confirm this. All the symptoms Pablo is having seem more than likely caused by medication because the symptoms are happening all over his body and because the tumour was on the left side of his brain, this would have an affect SPECIFICALLY on his right side.

Decadron is a really, really powerful drug. No one should be taking it for this long. I didn't even know just how powerful it was till the neurologist said that the Decadron could be the cause of Pablo's recent eyesight issues. He recommended that once Pablo is off the Decadron completely that he should see an optometrist because there might be some permanent damage to his sight.

The neurologist said that Pablo needs to be weaned off the Decadron over the course of a month and it will take two more months for him to even be feeling somewhat normal again. This is NOT AT ALL what we were told a few weeks ago. But we're used to this. Pablo's case and what he's experienced is very rare and it has made this all the more frustrating and seemingly never ending.

I think that pretty much sums it up but it's getting late and I'm tired so if I forgot anything then I'll add to this as I remember.

One final thing - DECADRON YOU REALLY SUCK, YOU FACKINSANAMABEECH!!!!

Goodnight.

11 comments:

  1. Julia,

    Read these:
    http://www.dr-bob.org/cgi-bin/pb/mget.pl?post=/babble/20030407/msgs/217075.html

    and

    do a google search for:
    "adrenal fatigue" decadron

    and

    "adrenal crisis" decadron

    Also, read this:
    http://www.inspire.com/groups/lung-cancer-survivors/discussion/recovering-from-decadron/

    Sounds like Pablo's instincts were good ... he DOES need sleep ... but, it sounds like he needs to get off that drug too.

    You both are in my prayers (actually, ALL of you are) and in my heart.

    BIG HUGS (and love and healing prayers).

    Barb

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  2. One more:
    http://arthritis.about.com/od/prednisone/f/withdrawaltaper.htm

    Barb

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  3. I really hope your husband feels better. I am amazed by how well all of you are handling this setback. I am keeping your family in my thoughts. (Also, I LOVE your blog. Thanks for doing what you do.)

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  4. I'm sorry that Pablo has to go through this trial and error stuff. I can only imagine how frustratin and scary it must be for you all. I'm happy that you seem to have gotten a clearer answer on this though. Hugs!

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  5. Thanks Barb for the links and for making me smile! Big hugs to you from all of us!

    Tara - after dealing with over 7 months of 'this stuff' we've grown quite numb to all the setbacks...probably because there has been so damn many. Thank you for loving the blog - that made me smile too.

    Ricci - we just want these doctors to get it right. I know it's hard for them because Pablo is such a rare case but we could really use a break. Hugs back!

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  6. I'm so sorry for all the misinformation and bad experiences you guys keep experiencing, yet each time I am so impressed with the way you both handle it all. I know this news sucks but hopefully Pablo is on the right path now and will be back to his old self again soon. Sending you guys a ton of love & well wishes from our family tonight!! <3

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  7. Hello, I found your blog through Desire to Inspire, and visited it first for the great kids' room ideas (I have a boy and a girl who share a room) - thanks for that, it's always inspiring to look at the pictures, or at least makes me smile. I am so sorry to hear about all the health issues that you family had to go through and am sending good vibes to you. When you are writing about your daughter, it often seems to me that you are taking about mine, who is a little younger, but equally determined and vocal (and cute). Best wishes from California, Alexandra

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  8. Thanks for the well wishes Stacy! We sure could use a bunch.

    Thanks for taking the time to say hi Alexandra! Aren't they just the cutest when they are determined and vocal. Makes life so much more entertaining. By the way, with cold weather coming our way, I envy that you are from California...

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  9. Doesn't California sound nice? It has been so freaking windy here. The whole city had high winds but we're on the lake and it was even worse over here. (Let me stop bitching and remember that during the summer it's cooler here. Anyway.)

    I'm glad your dad was able to take him and it sounds like you might have someone who knows what he's talking about. Getting him off that drug sounds like a great idea. So scary. Hang in there sweetie.

    Oh, here's a funny Gabe story for you. We ran a couple of errands with a friend and then the 3 of us (her, me, Gabe) went to lunch. At Manny's deli, SO delicious and coincidentally full of politicians because of the upcoming elections. It's also a big place and Gabe hasn't been there since he was about 1.5.

    So, you can never tell what Gabe's gonna eat--not a big eating kid--but he was sucking down the pastrami (that's my boy!). When he's done, he gets up from the table and tells me "I'll be right back." When I ask him where he's going, he tells me he's going to go wash his hands and that he'll be back. Little shit takes off (where exactly he thought he was going I don't know) and I have run to catch up with him. I had to laugh. He's a piece of work but cleanliness IS next to godliness. ;-)

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  10. Hi girl, I'm REALLY sorry to hear the news. Well, doctors doesn't know EVERYTHING, they know only small things about our bodies and drugs etc. And everyone comes form his own experience. That's why their opinions are so different. It doesn't make you feel any better, I know. Just hold on, Jule, we all are praying for Pablo's health.
    I have my app with surgeon Nov 23, until then I don’t know will they perform a bone grafting on me or will try and alternative treatment (if there any). Our best regards to Pablo, and a lot of kisses for you, your sisters and your adorable Isabella and Simon.
    Love you, bebe,
    Ella.

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  11. Thanks for the Gabe story Collette. I had a good chuckle - 'little shit' is right!

    Hey Ella! Always so good to hear from you. Please keep me updated as to what you find out on the 23rd and I wish you luck getting some answers. Kisses back to you guys from all of us.

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