We seem to have discovered another “possible” symptom or characteristic for Josephine and “her” disorder (I use quotes because each kid with Tet 8p is their own patient, until we can get a sense of what is what for all the kids).
The OT and PT are thinking Josephine has a sensory defensiveness issue (http://en.wikipedia.org/wiki/Sensory_defensiveness), as well as a hyposensitivity to movement. These are both considered to be Sensory Processing Disorders.
Is this a result of Tetrasomy 8p? Could be or it could be it’s just Josephine. What we do know is while some typical kids have can have these issues, kids with special needs tend to have this more often.
Why is this presenting now? My thought is Josephine is getting older and becoming more familiar with touch, sound, taste and smell. She is “waking up” to the world a bit more.
Josephine has been having “gag reflex” moments in the past, but I always thought it was due to saliva or eating something that got caught in the throat. Now I look back and realize she may have been having sensory issues for some time now.
How did we figure this out?
We were at Stepping Stones for group therapy and the OT, Alexis, suggested putting Josephine in a tub with uncooked pasta (penne, rotini, elbows…yum!). I did so without any explanation to her and she freaked. We took Josephine out and while the Alexis was holding her, Josephine started to gag. Immediately, Alexis identified that the pasta was the reason for the gag reflex. Not a clue until now!
So, to make sure I felt comfortable with this new information, I mentioned it to Kim, our Early Intervention OT. Kim agreed. In past therapy sessions, Josephine has been unhappy with messy play such as with pudding and finger paints. She can’t stand holding a crayon and won’t touch a marker.
In fact, after discovering this potential issue, I observed more of the same reaction during lunch one day last week. I gave Josephine pieces of mixed fruit, which is a little slimy from the juice. She didn’t want it, so I added some Cheerios as an “incentive”. Instead of eating both, Josephine looked at the tray and started to gag again. Then she tried to separate the two foods and got very frustrated at the sight of the food. I took the food away and she was fine.
I mentioned these occurrences to Lana, our Early Intervention PT, and she was surprised to hear this. She wanted to test it herself. So, she put some bath foam on a table and showed it to Josephine. No reaction. She put one finger in the foam. Little reaction. Two fingers. More of a reaction. The whole hand = GAG REFLEX. Lana was convinced.
What happens now? Will Josephine have this for the rest of her life? Who knows.
Kim gave us a brush and explained that we now need to do a brushing protocol. Brush Josephine’s hands, feet, legs, arms and back every 2 hours and follow it up with joint compressions. This will help desensitize her body a bit. Follow this link for more information on brushing: http://www.developmentaldelay.net/page.cfm/135.
Maybe she will always be sensitive to these things. But we now know if there is a random meltdown, we can better understand the source and how to correct it to make Josephine more comfortable immediately and in the future.