Becca has this growling noise she makes, very deep in the throat. We call her “Godzilla girl”. She had made this noise for years when she is happy or excited. It is her way of expressing herself. Lately she has taken to doing it for hours on end, the better part of the day, every day. Gets kind of old – quick!
I am pretty sure it has to do with her not tolerating one of her seizure medications. It has been worse since we went up on the dose.
Like any good parent I was calling her doctor about this. Trying to get them to adjust the dose or give her something to help relax her. We had to do a med, Clonidine, when she first started the Onfi to help with her behaviors. We did a TINY dose at night for about a month and didn’t need to continue.
So naturally I wanted to revisit this medication. I had zero luck contacting her Neurologist and was eventually advised to take her to the ER. I’m not kidding, they actually told me to take her to the ER.
So I did – we were already at Duke at the Children’s Health center when this bit of advice was given, so I just pushed her on over to the ER. There she was quickly treated and they agreed to reduce her Onfi and give a RX for clonidine. (See this Duke Neuro – was it REALLY that hard to do this over the phone with me, or get the PA to spend five minutes with us to give us this??)
Overall her growling was a bit better for a few days. She is going strong as I type this, but I’m doing my best to block her out. (she is also happily playing too)
Other than our mis-adventures dealing with Duke we have had a great summer so far!
Last weekend we went up to Lake Gaston and spent the weekend with my dad, Jacky and another family relative, Cathie (she is my dad’s cousin, and a very close family member).
We had a GREAT long three day weekend. We all go there Thursday night and had fun fun fun! Thursday when it was Jacky, Becca and I we went out for a swim. Becca loved her new float I rigged up
I took a regular big kid/adult float ring and had sewn straps around each side to attach in a pair of swim shorts. This gave her a seat in the ring – much like the baby ring floats have. We added in her life jacket to give her a bit more torso support.
Pretty much the height of relaxation for her! We also had multiple boat rides (a favorite of Becca). She got to ride on my dad’s new golf cart
and we had more birthday celebration (Becca just turned 8!!!)
All in all it was a great mini vacation. Just what we needed!
I guess even Godzilla needs a vacation now and then.
Oh – the Monday after we got back she had her 2nd IVIG infusion. It was a LONG day up in the day hospital at Duke, but she was great the whole day. I’m so excited about this treatment. IVIG is being used to help treat her seizures. It is greatly reducing her daily number of seizures.