PWS Awareness Month- Day 4

Hi Everyone,

Today we will talk about ophthalmology.  We see Dr. Busse every 6 months to check on Kemett’s eyes.  We starting going when Kemett was 12 months old.

Kids with PWS often have Strabismus:

Perhaps 3% of the general population have strabismus, or squint, but it occurs much more frequently in congenital conditions that involve chromosome abnormality. The strabismus might be constant or, less commonly, intermittent. One eye may consistently be the straight one, or the eye which is the straight one may swap from one to the other (alternating). About 60% of children with Prader-Willi syndrome have strabismus, which is present at birth or occurs soon after. Almost all squints in PWS are of the type called esotropia (crossed eyes). When one eye looks straight ahead, the other eye turns inward towards the nose. Exotropia (wall eyes), in which the eye not looking straight ahead turns outward away from the nose, is much less common as an original fault in PWS. However, it is a feature in some teenagers and adults as a later result of the surgical correction of esotropia due to ‘post-operative drift’. The development of strabismus at an early age in PWS could be due to the hypotonia (weak muscle tone) present at birth. Another factor could be a restriction of eye muscle movement caused by the reduced space available in the eye socket, which is associated with the narrow face and almond shaped eyes seen in many people with PWS. – PWSA-UK

We saw Dr. Busse in August 2015 for our second annual check up.  We had noticed that Kemett seemed to go crosseyed but didn’t track how often it happened or what eye.  So Dr. Busse said we should come back in 6 months.  We went back in March for a follow up.  We had tracked his eye movement and noticed his right eye goes inward but only when he is tired, sick or looking at something up close.  It goes back to normal pretty quickly.  At the moment, the only treatment would be to get Kemett glasses.  The doctor says that once we do that, we cannot go back.  So we will see Dr. Busse in 6 more months unless there is change.  Our hope is that as he gets stronger, so will his eyes.  Dr. Busse also feels that if we see his eye going like this daily and at least 30% of the time, then we will need to talk more about glasses.

Right now it’s a wait and see game.  We will go back in October.

Please feel free to ask any questions!  Thank you for your support!


The Demands




2 thoughts on “PWS Awareness Month- Day 4

  1. Reading today’s post I’m struck by how many moving parts there are to Kemmet’s health. On a daily basis. I think about how many aspects of his life you are tracking and anticipating… I think back at how informed and articulate you’ve become around PWS and around Kemmet in particular… It’s overwhelming just to think about. This might be an uncomfortable question to answer because I think you have great humility, but I’m curious if your family’s experience is common to PWS kiddos. Or are you on the higher end of research, involvement, pro-active parenting, etc.?

    • Hi Heather,
      Thank you so much for your kind words. I forget sometimes all the things I’m trying to keep up with for him. I am not sure I feel comfortable answering this question on the main facebook group, but would be happy to answer for you in a private message. Thank you so much for reading! 🙂

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