Wednesday, December 12, 2012

And it goes on and on and on and on....

So many wonderful friends and family have asked about the status of Emmy's 'fits' and if seeing our new neuro was helpful, so I wanted to post a little update...

We've been to see our new neurologist, Dr. Heydeman, twice now.  We feel confident that we've found THE BEST Rett Doctor Chicago has to offer.  He sat and listened, asked a lot of questions and helped us problem solve.  There is no quick fix but at least we have someone on our side who knows Rett.  I kept a careful record of the fits and tried to see if I could figure out exactly what was setting them off.  I could find no consistent pattern.  The most concerning thing is that she is unable to bring herself 'down'.  The fits escalate and she doesn't seem to be able to control it.  So, he recommended we try a pretty straight forward med to help block the adrenaline rush which in turn should help keep the fit from escalating.  It's called Propranolol which is a beta blocker.  I have the medicine in hand but have been dragging my feet a little on getting it started.  First, he wants her heart rate monitored because this med can potentionally slow heart rate.  Ummm, that makes me a little nervous since her heart rate is already completely out of whack because her autonomic system goes haywire.  Second, her school is in the middle of performing an 'assistive technology evaluation' and I am hesitant to start a new med that could have potentionally weird side effects.  I finally called out regular ped today to talk about how she'd like to go about monitoring her heart rate because it's time to give this med a try.  After a couple days of some pretty intense fits in some pretty unfortunate circumstances I have no choice.  I have completely stopped taking Emmy to any store unless I have another adult with me who can make a quick exit with her.  After the Wal-Mart explosion we had another run in, this time with an older man at a different grocery store.   I'll give you the quick version.  Emmy is crying but I have her positioned in the cart so she can't bang her head on anything.  Here I am high fiving myself because we're having what seems to the casual observer a 'normal' grocery store fit.  Nobodies hurting themselves, wooohooo!  Then an old man comes up behind me and screams at Em over my shoulder, "Now you stop that crying!"  It completely startled me and I think maybe he's just kind of being funny??  At this point I had already committed to checking out and  paying so there was no escape.  From there, let's just say there was a very unpleasant exchange of words.  No yelling, thankfully.  It ended with the check out lady and the bagger both apologizing to me for this man's behavior.  That's how bad it was.  So I am DONE which makes me sad because I feel like the list of what we're able to do together is getting smaller and smaller.

Propranolol it is.  We'll see how it goes.  If it doesn't help, we'll keep trying things until we find something that does.  Dr. Heydeman also recommended a GI specialist at Rush that he works with for Em.  We are seeing him in January.  I am just relieved to have found our go to people instead of wasting money and time with doctors who have no clue.  He also recommended a guy who hopefully is going to help us come up with some wrist/hand guards for her to wear.  We have some that our ABSOLUTELY AWESOME preschool teacher has made on her own.  Emmy's teachers are amazing...really, truly outstanding people. 

Not so great pics but all I could find with her 'wristies' on
Her teacher keeps revising her design!  She made some that were really durable and fit great but then weren't so pretty.  I was just happy to have something to protect her skin from hand mouthing and biting but...
Mrs. M thought Emmy shouldn't have to wear black and blue guards so she went out and found these pretty pinks.  She made some adjustments and they are now our go tos!!  Don't know what I would do without such wonderful people helping us along the way ; )


  1. I hear ya about that list ofthings you can do getting smaller...I very rarely take Avery on any routine errands. too stressful for me b/c she is so loud. but then I feel bad b/c what kid doesnt want to get to Target every now and then, help pick out toys or clothes or food? it stinks. I hope that the meds help. hugs!

  2. You and John do such a great job with Emmy. Reading this blog has been an we opener for me. Seeing Emmy so happy last night at Kelli's house was wonderful. She is so very loved and very lucky to have parents like the two of you, who look out for her best interests. We are always here for you!