April Updates

Funny how time flies and there just never seems to be enough minutes in the day now for me to update this site.
I recently asked to be taken off of the Neurontin (the pain medicine for my Shingles neuralgia) Wow, what a big mistake that request was! I thought it wasn’t working until I actually started to wean off of it and now I am in so much pain I could cry. The Neurologist also put me on Cymbalta for the Myalgia and I was referred to Johns Hopkins Neuromuscular clinic. So now I will wait to see what they say. My pain has been unbearable some days and other days it has been fine. The worst is the neuralgia right now because of the past Shingles episode.

As for Robby, we are increasing the Lamotrigine (Lamictal) and hoping that puts an end to the seizures for now. His sleep deprived EEG was normal (I never understand that) and his behavior has been getting better. It is always worse after the big seizures but then slowly gets better over time. We saw another psychiatrist last week at Kidspeace for the neuropsych eval for BHRS services and are hoping to start behavior therapy soon.

Rob and I tried to reconcile for awhile but it just won’t ever work. And we would rather be friends and not fight then be together and fight all the time. Madison has been through enough and I have been happy over the last two years and my future looks good right now so we will continue to do what is right for the children but as a couple it just wasn’t meant to be.

Madison has been having some issues too. Recently we realized she has been stimming, something we are used to because of Robby but did not realize Maddy was doing it too until these past few weeks.

What is Stimming you may ask… well it is repetitive stereotypic behavior commonly found in autism, but also found in other developmental disabilities.


This behavior may involve any or all of the senses in various degrees in different individuals.


Several examples are:


• Visual – staring at lights, blinking, gazing at fingers, lining up objects


• Auditory – tapping fingers, snapping fingers, grunting, humming


• Smell – smelling objects, sniffing people


• Taste – licking objects, placing objects in mouth


• Tactile – scratching, clapping, feeling objects, nail biting, hair twisting, toe-walking


• Vestibular – rocking, spinning, jumping, pacing


• Proprioception – teeth grinding, pacing, jumping

Inappropriate stimming such as licking objects and smelling people should be redirected and substituted with a more socially-acceptable outlet such as sucking on hard candy or aromatherapy.


Madison has been stimming since she was about three. She started by chewing on the collar of her shirts and her sleeves. Then Rob and I started to find little balls of wet paper everywhere. She would constantly chew on paper. She always had a fascination with raw potatoes and pasta. None of this ever seemed like a big deal. Rob and I were still married and living in the same house so we would discipline her when we saw her do this.

Over the last few weeks she started to do other odd things. We caught her sucking on pennies, scolded her that they were extremely dirty and a choking hazard and then recently my cell phone cord got mysteriously wet and I had to buy a new one. On Thursday night while I was reading her a book in my bed I turned my head only to find her sitting next to me sucking on the end of my brand new cell phone cord! I got mad, sent her to her room and sat down to think about this new problem. That’s when it hit me, like a freight train as usual, she has been doing this chewing/sucking thing for 5 years and something isn’t right because now at her age this is socially unacceptable. So I called another mom whose son is Robby’s age and is autistic, her daughter has learning disabilities similar to Madisons and they girls are in the same learning disability class, same bus and best friends. Melissa and I chatted and her daughter has some similar issues too. I spoke to Maddy’s teacher, guidance counselor and pediatrician. I have to chat with her psychologist this week yet.

As of now I am looking at:

Low Iron?

Sensory Integration Disorder?

ADHD? (which she is currently being tested for)

Anxiety, stress?

Situational issues?

One thing Rob and I both know is that Maddy has a fascination for Tic Tacs and gum, ever since she was little and every time we go to the store she asks for white Tic Tacs or gum. So we will continue to give her these things to replace chewing on other things. It was so cute because I told her soon I would give her a chewy like her brother has to stim on if she wants to chew something and she looked up at me and said “Can you please wash his germs off of it first?!” I thought to myself, “kid you just sucked on pennies and your worried about germs?!”
:)
Gotta love her!

We are also going to buy stress balls for her to hold onto because she also has a fascination for playdough and how it feels in her hands. I always find playdough everywhere, her backpack, bed, pockets.
Hopefully some of these strategies will help. Not really sure but hoping!

Any moms with ideas out there?