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Interesting appointment with neurology today!

Posted by on Mar. 22, 2013 at 3:32 PM
  • 18 Replies
I made an appointment with neuro because of Elijah's meltdowns- to see if he was worried about this meaning seizures, or a malfunction in his implant or anything....

He had an interesting idea. He said its possible, (though not probable), that Elijah falls into a very small group of kids just now being discovered with a genetic disease. He has a few of the markers- (one hemisphere of his brain being larger than the other- even before we started removing pieces to stop the seizures- autistic features, seizures, behaviors like Elijah is displaying etc....)

One notably missing feature is colon cancer, which is how this was discovered. Kids with colon cancer are often given a very low dose of aspirin to prevent recurrence.... Well, they started seeing that kids with colon cancer and these other markers were improving GREATLY in their cognition, behavior, autism etc when on the aspirin. Has something to do with the P13K something or other pathway that causes all of this stuff...

So, the geneticist is starting to identify kids with these other markers that haven't had colon cancer yet, and start them on aspirin to see if there is improvement, and so far 2 out of the 4 kids they've tried it with have seen drastic changes, and are now being tested for the genetic disease.

Sorry for the long explanation, but anyways- they are putting Elijah on a very low daily dose of aspirin for a month, and if it's life changing, we will undergo genetic testing to see if he also has this!

Of course we don't want him to have a genetic condition that causes colon cancer, but if we find out before he gets it- that could be HUGE.

Anyways. It's all just a guess at this point, and Elijah is only the 5th child to be identified with these markers and tried on aspirin, but it can't hurt and might help!

Crazy, huh?
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by on Mar. 22, 2013 at 3:32 PM
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Replies (1-10):
jjamom
by Michele on Mar. 22, 2013 at 4:13 PM

Wow!  Hope you get some answers one way or the other.

Pukalani79
by Silver Member on Mar. 22, 2013 at 4:16 PM

 Interesting! I'm not hoping that he has something that could cause cancer, but at the same time, I'm hoping this helps you to get some answers!

tobysmom103
by Bronze Member on Mar. 22, 2013 at 4:28 PM
1 mom liked this

 same here on one hand i dont want him to have anything causing cancer but on the other it would be nice for you to have answer. good luck:)


Quoting Pukalani79:

 Interesting! I'm not hoping that he has something that could cause cancer, but at the same time, I'm hoping this helps you to get some answers!


 

letstalk747
by on Mar. 22, 2013 at 5:31 PM

whoa , how very interesting

graycalico
by on Mar. 22, 2013 at 6:03 PM
Wow! They should just test him to see.
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mandee1503
by Amanda on Mar. 22, 2013 at 6:08 PM

Well, as much as cancer would suck on top of it all, yay for a possible answer!!

darbyakeep45
by Darby on Mar. 22, 2013 at 7:39 PM

Wow!  That is interesting...thanks for sharing!  Hope things work out!

cheergurl84
by Bronze Member on Mar. 22, 2013 at 10:08 PM
That's interesting! It sounds like he has a great neurologist.
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divinedimension
by on Mar. 22, 2013 at 10:11 PM

Good luck mama. 

Bluecalm
by Silver Member on Mar. 22, 2013 at 11:05 PM
Yeah, why don't they just do a microarray?


Quoting graycalico:

Wow! They should just test him to see.

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