Why is the above screenshot the only reference I can find online regarding yelling and Rett Syndrome during puberty? It is possible that my researching skills aren’t as exacting as they used to be. But when your child has been yelling/moaning/screaming for 4+ months (oftentimes upwards of hours each day), your cerebral functioning would also be greatly diminished. So don’t judge.

We’ve taken her to all the doctors and done all the tests. They can’t find anything that could cause the yelling. We’ve even tried some psychopharmacological medications but they had such disastrous side effects that we had to stop immediately.

So we are managing as best as we can. But some days… too many days… most days honestly… are full of hours of heart wrenching and awful. My kid. My poor sweet kid.

We aren’t the only Rett family to be going through this. Most of the useful information I get about this topic comes from other moms who are or have been in this situation. 

We don’t need sympathy. We don’t need pity. What we need are solutions. And if you’re another Rett parent searching for answers, know that you are not alone. I wish I had something helpful to share. Maybe one day I will.