Our Trip to Children's Hospital Boston.

S-Dad, K#2 (age 2.11) and I went down to Children's Hospital Boston for some important information about her seizures and a plan for her G-tube that is STILL in place. We got information on both issues. She has been receiving what we consider to be sub par care in Maine. Quite frankly, they just don't have the resources here.

In Boston, the top Epilepsy Specialists (Including the Director of the Epilepsy Dept)
in the country monitored her head using 26 electrodes glued to her head with
super glue like material and a surveillance system for the entire room.  The surveillance system
was big brother style. They could see us anywhere in the private room, even
when it was dark using infrared lights. This is what they call a VEEG (Video
electroencephalogram). The first day was uneventful except for trying to keep
K#2 occupied and happy. She wasn’t miserable, but was not herself. No belting
out of the songs she loves that are inaudible. Anytime we saw what we
thought was an event (a seizure) we were to press a button on a machine. The
machine looked much like the morphine drip they gave me after I had K#1. I
probably pushed it 5 times, but was not quite sure. 

They came in the next morning as a big team. All of the white coats were lined up and 

she did something she had never done before. She promptly told them to “GO!” Lucky for us the Epilepsy Specialists thought it was cute. I knew this by seeing their smirks. I was excited because it was the first time she had used the word go in this way. Inappropriate, yes, but we are working on language in baby steps and I was one proud Momma!!

The Epilepsy team came in the morning around 8am and at night around 4pm. Very
prompt and all lined up every time. The Attending Director on the end. Our Epilepsy MD did not
have hospital duties when we were there, but was on campus. Children’s Hospital 

Boston is its own world. It is massive.

I did e-mail her with my concerns and she replied promptly and told me that the team would address them as well. This is something we do not have in Maine. Communication. You can’t email a Pediatric Neurologist and expect a response. Trying to get a nurse is a challenge here. (Rolling eyes) The Epilepsy MD’s in white coats would address our concerns and ask questions. The first 36 hours they told us they saw nothing on their machines. I could not decide if I wanted them to see something or be happy that the amount of Depakote she was on was working.

Then the Nutrition MD came in and devised a plan to help try and get her off the G-Tube.  We have not set it up yet, but it will be having her eat food all day and then getting her continuous slow feeds through the night using her G-tube and a motorized pump. We will start with all three cans she receives and hopefully wean to none. Very slowly. We are to schedule a follow up with that department in 6-8 weeks along with our Epilepsy MD and are also encouraged to call if we have any questions. I’m shocked to find that there are people out there to help guide us with the G-tube.

Before we left (They are very efficient in this department. They wanted us out) one

of  the Epilepsy MD’s came in. He said that they saw seizure activity on her at least 6 

times if not more during the night and that they were most likely absence seizures and they were going to increase her Depakote. (Based on the video I had shown them too). If we had done this in Maine they never would have caught it. They only wanted to do a 24 hour VEEG on her.

At this point they are attributing her seizures and autism to the NRXN1 deletion she
has.  But, if more comes up, the extensive genetic testing will be done. Hopefully
it won't, but we know where to go if it does. It feels wonderful to be in good
hands and that she is getting the best care possible. We have a history at Children’s
dating back to when she was 11 months old and had her first VEEG. We have been
there five times now. They saved her life. With a little help of an angel who
pushed me to use my motherly instincts and go there. (you know who you are)

So, that is where we are at for now. Everything is evolving and I will continue to update her progress as life moves along. Thank you to all that sent kind words of encouragement, prayers, good thoughts, visited etc... It means a TON to S-Dad and I.

-SassyMom

Sassy Mom

My definition of Sassy: pert; boldly smart; nervy; saucy.

This is a new anonymous blog to replace a previous one that was not. I wrote about my children exclusively before. Medical stuff was a major category and not by choice. The first blog started out documenting some of our life, but our life quickly kept getting deeper and deeper into the medical world. That medical world included myself, but I left me out of it.

There are many problems with having a blog and having kids in public school. 1) They grow up. 2)They learn how to get on the Internet and read. 3) Their friends can find it and read it too. So, I made the old one private and plan to keep people posted about our lives via this one. The good, the bad and the ugly.

Why Sassy Mom? Because, quite simply,  I CAN become quite Sassy. Especially when it comes to advocating for my kids. I can be a fun Sassy or a pain in the butt Sassy. I prefer to be the fun Sassy, but will be a pain in your side until my children are taken care of. Or, if I am in an infrequent bad mood. Ironically, I have no ability to become Sassy when it comes to myself. I learned this the other day (once again) when I went to the MD and came away sobbing. This is something I need to work. Advocating for myself and taking better care of myself.

So here it goes: I do plan to write good things, but you will also hear about
Autism, Epilepsy, Type 1 Diabetes, G-tubes, DVT's, Pulmonary Embolism's, Back problems and everything else medical. God knows I have a lot on my plate. I hope he does not hand me anything else, but I am ready if he does.

Off to check a 3am blood sugar number and then to bed.


-Sassy Mom