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Thursday, July 14, 2016

17) Interview #2: Sasha talks about "stomach hunger" and "mind hunger"

If you read post #16,  you will have noted that Sasha did not eat very much for lunch or afternoon snack.  During dinner, he also did not eat much.  He said he wasn't very hungry. After his meager dinner, he complained of having a stomachache.  I tried to get him to explain what type of stomachache it was;  was it the kind that you got when you needed to use the restroom? Or was it the kind that you got when you felt like you had to throw up?  Or was it the kind you got when you were hungry?  Or maybe it was the kind you got when you were too full?  Sasha was unable to answer the question. He said he felt confused. We continued our conversation and this is what ensued:

Sasha:   I don't know what this feeling is.  My stomach just feels kind of upset.

Mom:   Can you remember another time when you felt this way?

Sasha:  Hmmm... Maybe.  I remember when I first started getting the oxytocin spray. During the first couple of weeks,  I had the same feeling in my stomach.  I remember not understanding the feeling and being confused about it.  It's kind of how I feel right now.  My stomach hurts but I don't understand why.

Mom:    Are you feeling well enough to go outside for a walk?  If so, let's just take a walk because  it's a really nice day outside.

Sasha:  OK, let's do that.

Sasha, his dad, and I left the house for a casual stroll in our neighborhood. About halfway through our walk, Sasha started to complain about feeling kind of weak and continuing to have a tummyache.

Mom:   Are you feeling all right? I'm wondering if you're weak from not eating!  Why don't we stop by a restaurant and you can rest and get a bite to eat?

Sasha:   OK, that sounds like a good idea. Maybe I am just super hungry since I haven't eaten very much today.  Could this be what I'm feeling, hungry?

Mom:   Well, let's just see if you feel better after you eat something!

We found a Mexican taqueria and Sasha ordered a quesadilla.  Before it arrived, he realized that he was definitely hungry. He ate it up with gusto!

Sasha:    Oh,  I feel so much better now!  I think I figured out that I was hungry. That is why my stomach hurt!  Before oxytocin, I never experienced this type of hunger because I never let myself go that long without eating!  What I thought was hunger before must have been my mind telling me I was hungry.  Today, I finally realized what it is like to have my tummy telling me that I'm hungry!  It's really a very different feeling, something I never felt before oxytocin!

Mom:   Wow, Sasha...That is really interesting! You are now getting acquainted with actual hunger signals from your body for the first time since your brain tumor!  How cool is that?!

Sasha:   Yeah, that's pretty cool. I guess I need to make sure I don't go for too long without eating because I didn't like the feeling that I had in my stomach today.

4 comments:

  1. i'm not finished with your blog still have to read many pages but the more a read the more it looks like Prader Willi Syndrome. I don't think my son who is 8 now knows what really feels like being hungry. I'm surprised because a friend uses oxytocin with her daughter (PWS) and that changes her behaviour (autistic behaviour) so as the trials are not starting in France I decided to do the same and read a lot with Sylvie's help (another mum). I finally found a doctor who agreed to this prescription and september 10th the pharmacy is expecting me in Geneva. In 2 weeks i'll be able to share some details. Karin

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    1. Thanks for sharing, Karin. I am glad that I have some readers in France. I was interested in finding out about Dr. Tauber's experiments with oxytocin- she studied some PWS patients and found it to be helpful. I was hoping to correspond with some of the families who have used oxytocin from when they participated in her study. Do you have any way of connecting with some other PWS families who are using oxytocin in France? Merci beaucoup! Où est-ce que vous habitez en France? J'ai habité à Strasbourg il y a longtemps pendant une été!

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  2. i'm not finished with your blog still have to read many pages but the more a read the more it looks like Prader Willi Syndrome. I don't think my son who is 8 now knows what really feels like being hungry. I'm surprised because a friend uses oxytocin with her daughter (PWS) and that changes her behaviour (autistic behaviour) so as the trials are not starting in France I decided to do the same and read a lot with Sylvie's help (another mum). I finally found a doctor who agreed to this prescription and september 10th the pharmacy is expecting me in Geneva. In 2 weeks i'll be able to share some details. Karin

    ReplyDelete