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Konner's Long Update

Posted by on Feb. 27, 2013 at 12:47 AM
  • 7 Replies

I know most of you girls aren't going to understand half the stuff I'm posting about and that's fine with me. I also know that you ladies don't know the beginning journey that we have been on but that is another really long story, but I just wanted to let you ladies know how our really crazy and very stressful day went.


Well where do I start for today... Well at midnight we started off in the E.R. because we thought that Konner had a seizure, which ended up being a so called night terror which we know it wasn't because this episode occurred while he was awake. Then back up at 6:30 to be at the drs by 9 at Shriners. He started off with his Neuro apt. The neuro wants him to start seeing his original neuro again because she does not think she is beneficial to him with what he may have where the other dr has more area of expertise . She does not want him using the DAFO's anymore till we can bring his heels down on to the ground. She believes that the Baclofen is making him have some weird side effects so we are gently bringing him back down off of it to an area that we find comfortable. That was about it with her it was pretty quick and we discussed a few things and that was it. Onto Ortho, they started with a hip x-ray which showed that his hip dysplasia has improved a little since 6months ago, but she still wants to keep a close eye on it. She too agrees that no more DAFO's and to continue with Botox for the next 9 months to see if the Botox can help with his Achilles tendon area because it is extremely tight, if we cannot get it to loosen up by that time then we will have to get surgery done on it and they may end up doing surgery anyways because his feet placement and such is off anyways. That apt went very good and very informative and we are starting new p.t. once a month there for a couple hours to see if that will help as well. Lunch break and then off to Primary's to get genetic counseling. Here comes the sad story... So as you all know we have been on this rollercoaster has to what Konner really has. Well we are completely back to square 1. The genetic counselor who is also a dr does not think he has HSP or Dystonia. Konner shows signs here and there of both diseases but he does not believe that is what he has. He entered spastic and dysplasia into his medical database and it brought up 260 different diseases. Well because Konner has had this since he was basically born ½ of them are ruled out automatically. So now we have to schedule an apt with the original neuro ASAP and get an EEG done on Konner because he believes that Konner may be having seizures that are not recognizable to the eye that could have caused this disease in him based off of his history. Then we will do a test for DOPA to see if it is at all possible Konner could have Parkinson's or Dystonia which he doesn't really think he has but need to rule it completely out. Once we get those 2 tests done move on for more research and possibly more tests to rule more out. Once we have a more better idea as to what it could be we will order genetic testing to be done to get an idea for sure what he has. Long process but hopefully doing it this way we can get somewhere closer than this is what he has just to give it a label when so far none of the meds are working for him. So here we go again with trying to figure out what Konner has.

by on Feb. 27, 2013 at 12:47 AM
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by Darby on Feb. 27, 2013 at 6:57 AM

Wow mama!  Hugs and hope you get some answers soon:)

by on Feb. 27, 2013 at 9:34 AM
(((Hugs))) I hope you get answers soon. My ds didn't do well on baclofen either.
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by on Feb. 27, 2013 at 2:43 PM

 Thank you ladies. This has already been a long journey and now we are pretty much starting all over and not too happy about that. I thought by now we would have a for sure answer.

by Amanda on Feb. 27, 2013 at 3:22 PM

*hugs* Hope you get some answers!

by on Feb. 27, 2013 at 4:09 PM

 I'm sorry that you are starting from the beginning again. I wish you good luck on all the coming tests, and appts. Hugs Momma!

My Second time around & loving it!
boy n girl     toddler girlLina

The Twins

by Michele on Feb. 27, 2013 at 5:21 PM

I'm sorry you are having to start from scratch, but hopefully you will get some answers this time around.  

by Elyssa on Feb. 27, 2013 at 5:41 PM
Man, so frustrating! Keep us posted.
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