There have been several studies conducted in France on the use of Oxytocin in adults on the autism spectum. They found that the adults socialized more often after taking Oxytocin, they understand the behaviors of others & can respond appropriately. They have also found that this hormone, even in a synthetic form, enhanced autitic adults' abilty to understand emotions in speech & can lessen the common symptom of repetitive behaviors. Some behaviors of children & adults with Prader-Willi Syndrome mimic those of autistic tendencies, and therefore, some of these studies have been very useful in the treatment of Prader-Willi. Autism is more common in the most rare form of PWS (imprinting defect), but a lot of the symptomatic issues are common in all three types.
Speech delays are very common, this is why early interevention with ALL types of therapy are necessary, even before there are any true signs there may be a specific issue. This may sound silly, but it is very likely there will be some sort of delay, and it's better to approach the care of your child's PWS as preventative, rather than the "catch-up" type, as I like to refer to it. This will cause you to really stand up to coordinators, or case managers, for your child's first 3 years of therapy if you choose to do it through the state. Most states do not work in a manner of preventative therapy - it's always the "catch-up" aprroach, and personally I think it's negligent.
We spent countless hours fighting for the proper care & the correct amount of therapy sessions for our daughter. There were also set-backs when we needed to ask for a new therapist because we knew the sessions were virtually useless. When I couldn't make any more calls or argue with another case manager, because my emotions were getting the best of me, AJ would take over. Luckily, he is calmer than me, and has a way with words. I found that they tend to listen to the man of the house with a little more respect... so if you have that in your back pocket, don't be afraid to use it.
The reason I'm highlighting speech delays in this post is because the use of Oxytocin in kids with Prader-Willi Syndrome is showing improvement in speech & socialization. It's also believed to help with anxiety, irritability, social communication, behaviors & possibly even some food issues. Individuals with PWS have been found to have a deficit of oxytocin-producing neurons and decreased oxytocin receptor gene function. Oxytocin is produced by the hypothalamus, where most of the issues with PWS begin, so it makes sense to try to bring it back to it's normal level.
Our speech therapist, who we really respect & trust, has told us that Claire has social anxiety & this is why, in part, she is practically non-verbal 3 months out from her 3rd birthday. We know she will talk, and she CAN talk, she just needs to form some new pathways in her brain that allow her to feel comfortable in social settings, enough to speak. It's definitely baby steps, but I see improvements weekly.
Oxytocin helps with creating that trust within herself to want to have conversations with others. She used to remove herself from play groups and go hide in the closet, or just go into a different room, away from other little kids her age. Now, she's trying to grab everyone's hand and dance with them, or lead them to a toy. She may not be saying anything, but her non-verbal communication has improved significantly. Do not be discouraged if progress seems to be slow - there is no timeline for which this all needs to happen. Afterall, Einstein didn't speak until he was 4.
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