Thursday, September 5, 2013


We got home from New York late Sunday night. There was mostly good news and I started a post two days ago and it didn't save so I have been dragging my feet to start another. Sometimes, I just need a break from talking about Rett Syndrome! Anyway, the good news is Lu is NOT having seizures. The staring spells are still just that, zoning out. Her hyperventilation is "frequent but not severe" Dr. Sasha said. This irregular breathing is not effecting her oxygen level. It just seems to maybe be distracting to her and effecting her ability to focus as well as she usually does. Her O2 level did drop to the low 80s a few times in her sleep, but it came right back up on its own. The solution to the hyperventilation is an increase in her Lexapro (which she already takes for crying spells she was having that are caused by Rett and just a chemical imbalance). Lexapro can help to regulate breathing, but if the breathing is caused somewhat by anxiety also, it will help with that. So we are trying that for a few weeks to see if it helps.

Dr. Sasha said motorically she has just changed a lot in a short time. Her muscle tone has started to increase which she said she doesn't usually expect to start happening until around age ten. She agreed that all of the other things we have been seeing are different, but thankfully (that's a weird way to say it I think) they are not out of the ordinary. Things will just always change, for better or for worse. And that's all I wanted; to go to New York, have Dr. Sasha look at her and tell me that these changes were common. To us, these changes were devastating, but I thought they were probably nothing out of the ordinary, but I didn't know for sure. So, we just have to, as usual, adapt and move on.

The not-so-great news, Dr. Sasha was concerned with the weight loss and trouble eating. She said that regulating her breathing could help her be able to focus on eating more, but her ability to chew and swallow,which has been declining, will not get better. She said she will likely need a feeding tube in the not-too-distant future. We will watch her weight as she has the Pediasure more regularly and see what happens, but she needs to at least maintain her weight and definitely not lose more. The downsides of a feeding tube are obvious and I know it sounds scary and terribly medical, however, there are many positives that go with it. Lu will still be able to eat by mouth, what she can, but she will be able to get the calories and nutrition that she needs, plus as much fluids as she needs. I will not feel an overwhelming panic/urgency during meals because I know she is only eating a fraction of what she previously could eat, and meals will not need to last an hour or more each time because we will be supplementing with the feeding tube. This is not written in stone and we are just going to monitor her weight and check back in with Dr. Sasha in three months to see what her weight is doing and go from there. 

1 comment:

  1. Julie -are you friends on Facebook with Krista Williams in Kylertown? Her daughter, Leah, uses a feeding tube too and Krista is pretty knowledgeable (willing to share information too) about various things in the "how to deal" department with a feeding tube and a child with other special needs along with that. I'd suggest you call or friend her -if you haven't already done that. Otherwise, good to hear many of your worries were alleviated by the visit to Dr. Sasha. Hope things get a tad easier on your nerves from having had that visit..