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Raising Special Needs Kids Raising Special Needs Kids

Rambling thoughts, bad day

Posted by on Jan. 4, 2014 at 10:04 PM
  • 8 Replies
Tys had a bad day. Distention, gagging, retching, stomach pain, low oxygen, seizures, fatigue, and super irritable. Due to the seizures he's super clumsy. He slipped in the bath tub (dh was right there thank goodness) and was all over the place dh said. He hit his head, not extremely hard but you could hear it bonk :(.

So here comes my rambling thoughts. Every time Ty's seizures pick up, his motility slows down and when his motility slows down, he has more seizures. It's just hard pinning what happened first. Our drs are aware of this and aren't entirely sure as of yet what to make of it but its not completely unheard of. But its frustrating as hell!! This time it seems his motility slowed down before the seizures picked up. I think I need to keep an extremely detailed journal. But I wish someone could tell me why this is. I'm sure it will come back to "its mito" which I hate hearing but meh.
by on Jan. 4, 2014 at 10:04 PM
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Momof4AEMW
by Gold Member on Jan. 4, 2014 at 10:40 PM

Sorry you and he have had a rough day.  I sure hope one of his many doctors can get a handle on it for you guys.  I know you are doing EVERYTHING possible, doesn't it make you wish they were doing more!!  Poor little guy! 

Momof4AEMW
by Gold Member on Jan. 4, 2014 at 10:43 PM

 And wasn't the J tube suppose to fix this for him, like it was to get the meds in the right spot to stop the constipation and keep things going through.  Where's their accountability to why things still aren't flowing.  Obviously I don't understand how all the internal systems work, but man it was like a giant hope giver that lands you in the same spot you were already in.  How frustrating for all of you!

mandee1503
by Amanda on Jan. 4, 2014 at 10:47 PM
*hugs* I'm so sorry today was rough. Hoping you get answers as you see new drs!
Mipsy
by Chelle on Jan. 4, 2014 at 10:58 PM
The jtube only helped the motility issues in his stomach which his stomach just stopped emptying. We knew this was still a possibility of happening having issues cuz he has dysmotility in his stomach, small intestine, and his colon. His stomach seems to have some backflow from his jtube coming up but he's due for a tube change so we want to see if that helps, then he has bile in his stomach that backs up and won't empty his stomach causing distention. Then his colon is causing issues again slowing down. The dysmotility and seizures aren't as severe as they were in September, so the meds are getting in there, but we probably need meds adjusted somewhere.

Unfortunately just due to all his issues, we knew this could still happen. All we can do is try to figure it out, adjust meds, and work through it. Meantime its miserable.


Quoting Momof4AEMW:

 And wasn't the J tube suppose to fix this for him, like it was to get the meds in the right spot to stop the constipation and keep things going through.  Where's their accountability to why things still aren't flowing.  Obviously I don't understand how all the internal systems work, but man it was like a giant hope giver that lands you in the same spot you were already in.  How frustrating for all of you!

Mipsy
by Chelle on Jan. 4, 2014 at 11:02 PM
Thanks, me too

Quoting mandee1503: *hugs* I'm so sorry today was rough. Hoping you get answers as you see new drs!
Momof4AEMW
by Gold Member on Jan. 4, 2014 at 11:03 PM

Hugs Mama!  I just want you all to get a break! 

Quoting Mipsy: The jtube only helped the motility issues in his stomach which his stomach just stopped emptying. We knew this was still a possibility of happening having issues cuz he has dysmotility in his stomach, small intestine, and his colon. His stomach seems to have some backflow from his jtube coming up but he's due for a tube change so we want to see if that helps, then he has bile in his stomach that backs up and won't empty his stomach causing distention. Then his colon is causing issues again slowing down. The dysmotility and seizures aren't as severe as they were in September, so the meds are getting in there, but we probably need meds adjusted somewhere.

Unfortunately just due to all his issues, we knew this could still happen. All we can do is try to figure it out, adjust meds, and work through it. Meantime its miserable.


Quoting Momof4AEMW:

 And wasn't the J tube suppose to fix this for him, like it was to get the meds in the right spot to stop the constipation and keep things going through.  Where's their accountability to why things still aren't flowing.  Obviously I don't understand how all the internal systems work, but man it was like a giant hope giver that lands you in the same spot you were already in.  How frustrating for all of you!

 

letstalk747
by Joy on Jan. 4, 2014 at 11:26 PM

pour guy , how miserable

darbyakeep45
by Darby on Jan. 5, 2014 at 6:29 AM

Hugs mama...I know all of this is really hard for you guys.  

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