Almost two weeks home already! I got caught up with my son, had a belated Christmas with my family and friends, and had the best Facetime session with the grandkids, who called to show me as they opened and put on their new cowboy boots, straight from Houston, Texas! My grand-daughter, Ely, did a great “Yee Haw” complete with a skip, hop and kick.
Katelin had some difficulty adjusting to yet another change-coming home, but seems to have adjusted, finally. One of the reasons I feel Katelin received the medication is that overall her behavior and anxiety level plummeted during the trial. For us, as a family and for Katelin, in particular, this is one of the most serious side-effects of Rett Syndrome. I will take a moment to talk about this for those who have not seen this side of Rett Syndrome. Katelin’s anxiety level can be debilitating. It can strike without warning and the reason never known. It’s often like someone flips a switch and a perfectly calm Katelin becomes aggressive, combative and destructive. Over the years it waxes and wans, but never goes away completely. Her level of calmness is the thing I miss most about Texas.
I have been told by several doctors that this sort of anxiety and the screaming fits/aggression are most often seen in higher functioning girls, possibly due to the “almost” of being able to communicate, like being so close and yet so far. But as you can see, the end result is times like this-
I found as we travelled the years from diagnosis to now, that this aspect of Rett Syndrome can be downplayed by doctors as not being significant. I was often told I would “just have to deal with it”, mind you even when Katelin was young and screamed for 8-10 hrs a day. The impact of this non-stop screaming cannot be overestimated. It inhibited any and every action of the family, where we went, how long we stayed, IF we even got to stay, loss of sleep for everyone, decreased performance of my other children in school and their social lives, and most of all on Katelin-could she go out, did I dare take her out, did I dare not take her out (being bored is one trigger). Next to being able to talk one day, my fervent wish is that Katelin will be calm, at peace with herself and her surroundings, understand and adjust to inevitable changes in her environment. This is the stuff of my dreams in regards to NNZ.
Now that things are feeling back to normal, a couple of things stick out.
First, her appetite is still down. Now, here’s the thing-the researchers thought perhaps (if Katelin got the NNZ) that the medication could possibly worked to normalize her appetite OR that all the changes-going to Texas, being in a hotel, being out of school etc. was affecting her appetite, but now we’re back home, she’s not on the medication right now and her routine is back to normal, with her regular food provided. So, I am curious, could the NNZ have triggered something, made a momentary connection that switched something on/fixed something, that having been turned on/fixed no longer needs the medication to work?? Any researchers out there who can comment on that question?
I ask because of the other thing that sticks out. Katelin had not had her menses for months and months prior to the NNZ trial. She got it during the trial and has now gotten it again, without any other changes in meds etc. So, again, is it possible the NNZ normalized something in regards to that and once normalized does not need the influence of the medication??
I would also like to thank Wayne for sending me the link to the following lecture. The speaker Dr. Snape (yes, Harry Potter fans, Snape!) does a great job of explaining in (nearly) layman terms the why’s and how’s of NNZ, how it works, why it works and why Rett Syndrome and Fragile X were chosen for studies. It’s extremely interesting and I recommend it for anyone who is curious and do watch it all, it’s really fascinating and encouraging.
I will still be updating Katelin’s blog every couple of weeks as we make our way to the end of the year, results and getting the medication, if the FDA approves. Fingers crossed everyone!