The waiting game

Okay time for the update! We made the decision to tak Zoey off all meds about a month ago. We made this choice because our doctor is still not convinced she is having seizures, and we have tried so many meds and the ones that were left to try either cost a fortune or else had side effects along the lines of ," if you get a rash it will kill you" type things... So off she has come. Most days she has the same, but other times I worry her seizures are worse or at least more frequent. Not enough of a difference to make me put her back on the meds! 

We are still at a loss for what Zoey actually has. After feeling frustrated I posted on a Facebook page a video of my zoeys episodes and had many moms comment that what she was doing was extremely similar to their daughters situation. Their daughters all have Rett syndrome. Now technically we already went down this path a year ago. The doctor had mentioned she thought it might be Rett syndrome and so after many tears and a genetic test we waited for results. It can back positive.... Then negative! So let me explain why that was. They did I test that looked at all of zoeys dna to try and find something wrong. At first the section that causes Rett syndrome looked off. That was where the positive came from. They then looked more closely at that strand and said it looked normal so that was the negative. So we let that be our answer. Now I'm a little frustrated because I feel like we should have said that because we got 2 opposite answers we should look a little closer! At the time I was just relieved that we didn't have retts so we moved on. 

Coming back to our time now, we are waiting in a year long line to do a more detailed test of both Rett syndrome and Angelman syndrome. We believe she will be negative for Angelman, but there are similarities I'd like to have checked anyway. Rett syndrome she does fit into by looking at symptoms. However, she doesn't have them all. If you don't know what Rett syndrome is I suggest you look it up because as much as I want the word out on what Zoey goes through its a pretty hard diagnosis to get and i have done enough crying! Now I just want my answers! 

Our next step is to wait for the genetics people to meet with us. This will take a waiting period of about a year. Trying to figure a way to get in quicker, but it's rough! So while we wait we will be working on getting a hemp card and ordering charlottes web. Hopefully in the next week or so? It will still be expensive but at least it is a different option than what any of the horrible medications did to her. Very excited to see if it will be of help to her! Still waiting on getting an occupational therapist on board with us, but that too should be coming soon. 

Last but not least, Zoey was accepted to a preschool here in town and will start in January! Twice a week, for 2 hours I not sure how that will go down for me or her, but I think it will be a good thing for both of us!