Friday, November 13, 2009

Rett syndrome

Well, a lot has happened since my last post. On Monday the 9th, a regular old Monday, after school playing outside with the kids, I received a phone call from Avery's neuro saying she wanted to meet with us the next day to discuss Avery's test results. I immediately new the results were positive. She confirmed that yes the test came back positive for Rett syndrome.

It was surreal. I felt like I was in a movie. I was standing in my kitchen by then with my 2 cuties at my feet laughing and having fun and there I was sobbing. I dont remember much of the conversation but I do remember thinking:I feel so relieved but I also feel so shocked and sad. It was the strangest feeling ever. I felt like I should be crying but also sort of felt like I didnt need to. I called Red and told him-luckily he was about 10 minutes from home. His mom arrived shortly after he did /c we had already asked her for dinner. She got the news as soon as she walked in the door. We all cried a little here and there. Instead of making the chicken piccata I had planned we ordered a pizza. I wasnt in the mood to cook. Red made plans to be with me for the meeting with the neuro the next day and his mom said she would come with us as well. i slept better than I thought I would but each time I woke up all I could think was "Avery has Rett syndrome". so strange.

The next day Avery went to school as planned and we went to the neurologists office. I've never much cared for her and I chalked it up to her always giving me bad news but this meeting (coupled with some previous emails) confirmed it, she sucks at life. I said "this is my mother in law Kasie", she said "i figured" and laughed-how bout "hello Kasie Im so and so nice to meet you." ??? As soon as we walk in to the office she says "I see you left the victim at home" followed by nervous laughter by all of us. We were all too dumbfounded to speak. She proceeds to explain, answer questions etc. We had previously spoken about trying melatonin to help Avery sleep and she asked me about it. I told her I hadnt gotten it the mail yet and she asked me "why, you can get it everywhere, probably even the 7-11!" I said "well I wanted the liquid kind and they dont sell that everywhere". "well WHY did you want the liquid kind when you can just get the tablets and crush them?" ummm who the hell cares? do you have to be right? Jeesh. So then i ask her, "are there any Rett syndrome specialists in the area" She says "not that I know of". Well I found out that day that there is a Rett syndrome clinic at Childrens hospital in Oakland-she works at Kaiser in Oakland-claims to have all this Rett experience-but didnt know about that? yeah right. Kaiser just doesnt want to pay for it!

So I email her yesterday to ask her why she didnt tell me that and if it was because Kaiser wouldnt pay for it. I also asked her to send me as much info as possible about the test and Avery's specific mutation b/c it is tough wondering if she will lose all her skills one day.

She responds saying that Kaiser wont pay for it but I should see if they have financial aid available. (thats not what I asked!) She also told me that I was focused on the negative and should get counseling to grieve the loss of a normal child. !!!!!
Here is what I replied:

I've let myself take all day before replying to you because your email-in addition to other emails and comments you have made-was insulting. I think you are speaking out of turn when you say I am focusing on the negative. You have no idea how I am dealing with this-we have come a long way since Tuesday morning and I am actually being surprisingly positive about it all. Yes we are grieving and yes we have questions but that by no means indicates negativity. You also made some comments via email that seemed very inappropriate about "will I manage to survive waiting" etc. it seemed very callous, condescending and unsympathetic.

On Tuesday you quipped "oh you left the victim at home?" that was seriously out of line. I was, as well as my husband and mother in law, in shock that you made that comment and we were all too dumbfounded to say anything.

We would prefer not to have a Dr that refers to their patient as a victim and I will be moving Avery's care to someone else.

thats all I had room for or it would have been much worse. Like I said she sucks at life.

Anyway! I have been extremely impressed by my abilities to look at the bright side through all of this and while I know we have a long road ahead, we have to just move forward and make this work. I have found so much support through the moms on the delayed darlings board on babycenter, our friends and family. I have also already made contact with a couple families who live within 10 miles of us who have daughters with Rett. We are excited to get going on this journey with our special little Avery and are going to be so thrilled to see the dream of a cure be realized. This was meant to happen to us, i just dont know exactly why yet.

I saw this on a babycenter mom's blog and had to steal it (thanks Stacy)

Listen to the MUSTN'TS, child,
Listen to the DON'TS
Listen to the SHOULDN'TS
Listen to the NEVER HAVES
Then listen close to me --
Anything can happen, child
ANYTHING can be.
~Shel Silverstein


Anonymous said...

I am so sorry you had to deal with that crap-bag neurologist! I think you handled it beautifully.

We had a follow-up visit with Joe's geneticist recently, and she offered up this gem: "Well, it looks like he got all his dysmorphic features from you, Mom." (Really? You are no prize yourself there, Dr. Asshat.)

Anyway. I admire your take on all of this, and it sounds like the shock is giving way to peace and resolve. If we lived closer, I would cook you that chicken piccata myself! :)

Erica said...

thanks! I ended up making the chicken piccata the next night but I would take it made by someone else any day! i cant believe your neuro said that to you! what?

Carrie and Avery said...

Hi. My name is Carrie and I too have an Avery with Rett Syndrome! I came across your post through google alerts. If you have any questions feel free to ask! Welcome to the family who hates to see new members!

Erica said...

hi carrie!
i am actually already following your blog! :) i found yours on brooklyn butlers page. yeah, although we wish we werent part of this "family" we are glad it is there and we are feeling the love. how does google alerts work? thanks for commenting!

DJLG said...

DISGUSTING NEUROLOGIST!!!!! Some of them are..the one who delivered my path report curtly walked in and said "bad news. the path report was not good. you're going to need a year of chemo and radiation", and turned on his heel and left. I would seriously consider reporting her for those comments. UNFORGIVABLE to treat a family that way. They must not teach compassion in a neuro residency. fucksticks. But then there is Robert Knowlton....

Hellwig Family said...

E! Good for you! You have much more self control than I do- think I would have had a "come to Jesus" in the office. You are strong, Avery is strong, and you have so much love and support. I am proud to call you a friend!!

Kelly said...

I had not read this post prior to all of our emailing yesterday. UGH! We are on oue second neurologist too. Some doctors can be less than sympathetic that is for sure, actually down right rude which is for sure what you have encountered. I hate that for you and hope that as you move forward yo uare surrounded by supportive people (including physicians) I have heard AMAZING things about Katie's clinic and think you will get great care and support there for sure! Hugs to you!

Nicole said...

wow, just wow! That's about all I can say. Some people go into the wrong profession. Good luck to you and your family.

Unknown said...

wow...i'm just now reading this!! i had no idea this happened!!! wtf???? i'm so glad that you emailed her...what was the response?