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Does it ever end? *UPDATE*

Posted by on Mar. 30, 2014 at 7:44 PM
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Update - I spoke with Brady's neurologist today, even though he's on vacation...he's a great guy!  He was very concerned that Brady's had so many seizures in a such a short time.  He has increased his anti-seizure medication and he stated if things don't get better soon, then he will put Brady on Valium to help calm his brain down.  Let's hope this does the trick!

You get one thing taken care of, one situation managed, one issue dealt with, and you just hope that things will calm down for a bit.  Yeah right.  Who was I kidding?

It's always something.  ALWAYS.  This just never ends.  And I don't think it ever will end.

Brady has had 6 seizures in the last 10 days.  That may not seem like much to some people who's children have multiple seizures every single day, but that's a LOT for Brady.  We just increased his anti-seizure medication, and he's been on the new dosage for about 2 weeks now.  The reason we increased it was because he was having more seizures...more frequently than he had been having them.

Brady has convulsive seizures, absence seizures and gelastric seizures.  All of them.

I emailed his neurologist this morning, so I should hear back from him tomorrow.  He's really good about getting back with me quickly.  Something isn't right with my little boy.  My husband is even worried, and that doesn't happen often.

I'm so ready for bed.  It's not even 8:00.  I might just go to bed anyway.

by on Mar. 30, 2014 at 7:44 PM
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Replies (1-10):
Momof4AEMW
by Platinum Member on Mar. 30, 2014 at 8:00 PM

I sooooo agree with you on that it never ends and is ALWAYS something!!  I've given up thinking it is every going to get easier, something just replaces something else, ugh!!

So sorry to hear about Brady's seizures increasing.  I knew about the gelastric seizures, but don't remember hearing about the others.  That must make it hard to pin down how to treat three different types - unless one med kind of fits all.  I hope your Neuro gets back to you quickly and can get things fixed for you all.  Keep us posted.  HUGS!!! 

jowen905
by Jan on Mar. 30, 2014 at 8:02 PM

 Oh, dammit, I'm so sorry.  It does always seem to be something, some new worry, new concern.  Poor little guy.  I hope the neurologist can figure out what needs to be done to help control the seizures.  Let us know, please.......hugs.

Cassidysmom611
by on Mar. 30, 2014 at 8:04 PM

Oh man, I can't imagine!! 

I agree though, it is always something. It's like just when you get over one hurdle, another one takes its place. Frustrating. Some days, it feels like autism is always a slap in the face. 

I hope Brady's Doctor gets back to you soon, and that things calm down. Good thoughts to you all!!! 

darbyakeep45
by Darby on Mar. 30, 2014 at 8:09 PM

Thanks:)

There are SO many anti-seizure meds out there for kids...it's almost unbelievable.  Brady was on Trileptol at first (back in August), and it didn't do anything at all.  So, we tried Topamax.  We just increased the dosage on Topamax 2 weeks ago so I expected things to get better...not worse.  

Anti-seizure meds "typically" work for all kinds of seizures.  We'll see about that though:(

Quoting Momof4AEMW:

I sooooo agree with you on that it never ends and is ALWAYS something!!  I've given up thinking it is every going to get easier, something just replaces something else, ugh!!

So sorry to hear about Brady's seizures increasing.  I knew about the gelastric seizures, but don't remember hearing about the others.  That must make it hard to pin down how to treat three different types - unless one med kind of fits all.  I hope your Neuro gets back to you quickly and can get things fixed for you all.  Keep us posted.  HUGS!!! 


darbyakeep45
by Darby on Mar. 30, 2014 at 8:10 PM

Thanks mama.  I just want to go to bed and not wake up in the morning!

Quoting Cassidysmom611:

Oh man, I can't imagine!! 

I agree though, it is always something. It's like just when you get over one hurdle, another one takes its place. Frustrating. Some days, it feels like autism is always a slap in the face. 

I hope Brady's Doctor gets back to you soon, and that things calm down. Good thoughts to you all!!! 


darbyakeep45
by Darby on Mar. 30, 2014 at 8:10 PM

I will definitely update tomorrow...thanks:)

Quoting jowen905:

 Oh, dammit, I'm so sorry.  It does always seem to be something, some new worry, new concern.  Poor little guy.  I hope the neurologist can figure out what needs to be done to help control the seizures.  Let us know, please.......hugs.


dawncs
by Dawn on Mar. 30, 2014 at 8:12 PM

 I hope things get better for Brady and you two Darby! All of you are in my prayers that help is around the corner. I have in the past become immune to two doses of my chronic medical condition medication. It is a scarey thing considering the nature of it.

darbyakeep45
by Darby on Mar. 30, 2014 at 8:14 PM

Hugs Dawn...thanks for the support:)  I cherish your friendship!

Quoting dawncs:

 I hope things get better for Brady and you two Darby! All of you are in my prayers that help is around the corner. I have in the past become immune to two doses of my chronic medical condition medication. It is a scarey thing considering the nature of it.


Momof4AEMW
by Platinum Member on Mar. 30, 2014 at 8:35 PM
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That makes sense.  Macy's is Midazolam, but it would be more of an in the moment med rather than a daily.  I hope they can do a med change and get this figured out for you.  Hugs! 

Quoting darbyakeep45:

Thanks:)

There are SO many anti-seizure meds out there for kids...it's almost unbelievable.  Brady was on Trileptol at first (back in August), and it didn't do anything at all.  So, we tried Topamax.  We just increased the dosage on Topamax 2 weeks ago so I expected things to get better...not worse.  

Anti-seizure meds "typically" work for all kinds of seizures.  We'll see about that though:(

Quoting Momof4AEMW:

I sooooo agree with you on that it never ends and is ALWAYS something!!  I've given up thinking it is every going to get easier, something just replaces something else, ugh!!

So sorry to hear about Brady's seizures increasing.  I knew about the gelastric seizures, but don't remember hearing about the others.  That must make it hard to pin down how to treat three different types - unless one med kind of fits all.  I hope your Neuro gets back to you quickly and can get things fixed for you all.  Keep us posted.  HUGS!!! 

 

Nickmom1118
by Nicole on Mar. 30, 2014 at 8:39 PM
You have so much going on Darby! Hugs!

I am so sry that you have to go through this. It does feel like its one thing after another.
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