I'm new to this whole seizures thing and so I'm not sure what to do.  Gavin is still having absent seizures,  even on the depakote. Lizze walked into Gavin's room this afternoon and he was sitting in bed,  holding the remote for his NetFlix box and staring at a blank screen.  When she tried to get his attention,  he wouldn't respond. After the 5th or 6th attempt to get his attention he startled because to him,  it was like Lizze had come out of nowhere. The time it took for Lizze to get him to respond was maybe 30 seconds.  However,  we have no idea how long it lasted prior to that.  It was long enough that whatever show he had been watching had ended and timed out. Are absent…

I just got back from the pediatrician with Emmett.   Basically,  there isn't anything that we can do. He likely needs longer cycles of Prednisone.  Currently he takes it 2x a day for 3 days. He may need to do that for 5 days instead. The problem with that is Prednisone suppresses the immune system. He would need to do that once or twice a month and that wouldn't be safe. For right now,  we're are doing 1 teaspoon of Benadryl 4 times a day.  That can help reduce the allergic reaction his body is having to the virus that is apparently causing the sores. We will see immunology hopefully next week.  It was also recommended that we see infectious disease as well. For now,  at least the Benadryl will help…

I woke up this morning to the realization that today is Friday the 13th.  Honestly,  I'm not a superstitious guy but having said that,  it's Friday the 13th. I have already been back and forth to the Ford dealership and in a little bit,  Emmett is being seen by his pediatrician for the second fever flare.  We spoke with immunology last night and the said there is nothing we can do aside from 1ml of Benadryl,  4 times per day.  It's something about reducing the inflammation. Outside of that,  all we can do is manage the pain and do our best to keep him hydrated. The doctor told us if we even suspect that he may be dehydrating or stops drinking that we are to get him to the ER…

Elliott woke me up because he had an accident.  This never and I mean never happens to Elliott. Because his bed is unusable at the moment,  him and I are camped out on the couches... I'm sooooooooooo tired..... **Thanks for reading**        -Lost and Tired Please join our Community Autism Support Forum Posted from WordPress for Android so please forgive any typos as auto-correct and I don't see eye to eye. :-)

I always love to share my kids creations with you all. What I really love about sharing their creations is why I'm sharing them.  My kids are actively making things just so they can share it with you. I think that's pretty cool.  :-) So once again Elliott has created something to share with you all. He didn't name this one but he's proud of it nonetheless. Gavin wanted to share his Halo action figure collection with all of you as well. **Thanks for reading**        -Lost and Tired Please join our Community Autism Support Forum Posted from WordPress for Android so please forgive any typos as auto-correct and I don't see eye to eye. :-)

Lizze and I are so pissed off right now I can barely write this.  Because of that,  I'm going to keep this short and sweet. Basically,  we received a phone call about Emmett's speech therapy.  Emmett has been having speech therapy for 180 days now and has not progressed fast enough is not caught up yet.  Insurance has stated that Emmett will never catch up and so they will no longer cover speech therapy for him. In other words,  they are essentially saying that there is no hope for him and that we should give up. I don't have words to express just how pissed off I am right now. I realize insurance is about the bottom line but who the fuck says something like that?  How do they sleep…

Poor Mr.  Emmett John is once again facing another medical issue.  He has finished up his last day of Prednisone the other day for his then current flare and has already started another flare.  I don't think that we have ever seen this happen before. If you look below,  you will see just one of the large mouth sores.  Since she these are not herpes related, there is very little we can do.  In fact, the only treatment is Prednisone and Unfortunately,  there is a major draw back to using that.  Basically,  it suppresses his immune system and leaves him susceptible to things like pneumonia.  He just recovered from pneumonia a couple of weeks ago. We have a few calls in right now because we don't know what to do. …