Please excuse all spelling and grammatical mistakes, my mom first language is French, but she loves to express herself in English.....

Sunday, February 24, 2013

Medications side effects?

I suspect that Alexandra was having some side effects from her seizure medication for the last 8 months! She was on Lamotrigine for a year already, but some spare seizures came back, so our doctor decided to add Onfi. Alexandra takes very light doses , she is so light in weight and sensitive to medications. Anyway, I took a very long time to have her on the full dose of her last medication the Onfi, just watching effects and if seizures were presents. 
The seizures never disappeared, but were only like what I call twitching seizures, or she was having a real seizure every twelve days or more and not with a lot of effects. So I thought that the new med was kind of working, until last month when I had reach the complete dose level of the recommendation and Alexandra was still having seizures once and a while.
 I told the neurologist that Onfi was not working, and after a visit he decided on another drug, Depakote. We had to slowly switch,and stop the Lamotrigine and Onfi and this is when it became clear to us that our true Alexandra was finally back!
The differences is hard to describe, I kind of talked in early post that Alexandra was strange and different , but that I was not sure what it was.....but now I am pretty sure that it was a side effect of the medication. 
She was overall never really there. Hard to catch because our girl are always kind of strange! Some days are fantastic and some days just do not work! But there it was even more, it was a very light veil between her and us. A not able to reach out veil.
Now she is all there, her eyes and her smile are very present, and she want to listen and be part of everything.  I am so glad..... 
So be careful, and watch closely, I have just learned a lesson. 

Thursday, February 7, 2013

Massage with Rett girls

I massage Alexandra often. For this I use Olive oil, Coconut oil and Lavender essential oil.  This is simple and maybe the safest and less expensive. I take a little plate where i pour the three. I sometime use only one or two . I pour two or three drop of the lavender that I also use for her bath mixed with Epson Salt. I send Alexandra to school with a small pot of the coconut oil so they can massage her hands during the day. From the time I start to use the coconut oil Alexandra stop having redness or problem with her skin on her hands. I like it very much , because it is fine if she put her hands back to her mouth, Coconut , Olive and Lavender oil are safe to be digested.  I put some on her face, but also on her little derriere when I change her diaper. No rash or sore and she always smell very good. Once a week after the warm bath, I massage Alexandra full body. I do a instinctive gentle massage. I try to get in touch with her body and gently massage her everywhere. I insist on the wrists and ankles, hands, fingers, feet and toes. I also do her belly, her front shoulder, legs, arms. I reach under her hips to the spin  to relaxes  a little her basin.  I massage her back when I can and finish by her ears and a small touch to her face.