Category Archives: Breathing issues in Rett syndrome

Rare Disease Day 2022

Posted on March 2, 2022 by melelllan

I missed writing yesterday because it was a rare day, indeed; one in which I actually had some place to go and hang out with my other daughter. Such a day comes along slightly more often than once a year, … Continue reading →

Posted in boys with Rett syndrome, Breathing issues in Rett syndrome, Death in Rett syndrome, Rare disease day, Rett Syndrome | Tagged , , , , , | Leave a comment

A Chat with Dr. Pichard of IRSF

Posted on December 20, 2021 by melelllan

Disclaimer: Unless specifically stated, the possible benefits down the line are my opinion alone. As one might imagine, I and other parents have a ton of questions since the results of the Trofinetide Phase III came out. One of the … Continue reading →

Posted in Acadia, anxiety in Rett syndrome, Breathing issues in Rett syndrome, clinicaltrials.gov, Communication, Daffodil trial, Dame Margaret Brimble, Dr. Helen Leonard, LAVENDER TRIAL, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, rettsyndrome.org, screaming in rett syndrome, Talking, Trofinetide Phase III | Tagged , | Leave a comment

Rett syndrome Awareness Month #2 Sucker Punches

Posted on October 2, 2021 by melelllan

Rettsyndrome.org has a glossary of words and definitions! I must admit that I only recently learned this, so kudos to whomever put this all together. When Katelin was first tentatively diagnosed with Rett syndrome at the age of 18 months … Continue reading →

Posted in anxiety in Rett syndrome, Ataxia, Breathing issues in Rett syndrome, Communication, Education, grief, hand clasping in Rett syndrome, homeschooling, Human body, Pain in Rett syndrome, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, seizures in Rett syndrome, Talking, Trail to a Texas Trial | Tagged , , , , , , , , , | Leave a comment

A Rose by Any Other Name…is Still Rett Syndrome

Posted on April 9, 2021 by melelllan

This is something I’ve wanted to get off my chest for sometime, years actually. It’s bothered me at times, hurt me at times, frustrated me often and made me hurt for others so many times I can’t count. It’s the … Continue reading →

Posted in anxiety in Rett syndrome, Ataxia, boys with Rett syndrome, Breathing issues in Rett syndrome, Communication, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, seizures in Rett syndrome, Talking, Trail to a Texas Trial | 5 Comments

October Pandemic

Posted on October 1, 2020 by melelllan

It’s been nearly three months since I’ve put my pen to paper here, on this blog I love. The world is being ravaged by a pandemic and every day is a struggle to get by, to find some normalcy, some … Continue reading →

Posted in anxiety in Rett syndrome, Ataxia, boys with Rett syndrome, Breathing issues in Rett syndrome, Communication, Death in Rett syndrome, Education, grief, hand clasping in Rett syndrome, Pain in Rett syndrome, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, screaming in rett syndrome, Trail to a Texas Trial | Tagged , | 1 Comment

Rett Syndrome is Such a Trial… #2 Ketamine

Posted on May 15, 2019 by melelllan

Many parents can attest to the fact that after a procedure requiring anesthesia our children have a decrease in Rett related symptoms. For Katelin, this was a drastic decrease in behavioral issues. My other children would often say… Can we … Continue reading →

Posted in Breathing issues in Rett syndrome, FDA, ketamine, Rett Research, Rett Syndrome, Rettland Foundation, rettland.org, RSRT, Trail to a Texas Trial, Uncategorized | Tagged , , , , , , , , , | 2 Comments

Hold the Presses-Trofinetide in the News!

Posted on March 27, 2019 by melelllan

The first publication of the Pediatric Trofinetide trial has hit the proverbial newsstand! Neurology.org has published “Double-blind, randomized, placebo-controlled study of trofinetide in pediatric Rett syndrome” ahead of print. So, it’s hotter than “hot off the press.” So, quick cut … Continue reading →

Posted in Acadia, anxiety in Rett syndrome, Ataxia, Breathing issues in Rett syndrome, Communication, cure, Dr. Walter Kaufmann, hand clasping in Rett syndrome, Intrepid 2566, margaret brimble, Neuren Pharmaceuticals, Neurology.org, NNZ-2566, Orpan Drug Status, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, screaming in rett syndrome, seizures in Rett syndrome, Texas Children's Hospital, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , | Leave a comment

Sarizotan Trial #4: Almost There!!

Posted on December 29, 2018 by melelllan

As we head into the new year, I just wanted to give you all an update on the Sarizotan trial- STARS- for daytime apnea (breath-holding). I’m pleased to announce that Newron only needs 8 (or less) more participants to complete … Continue reading →

Posted in Breathing issues in Rett syndrome, cure, hope, Newron, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettland.org, rettsyndrome.org, sarizotan, Trail to a Texas Trial | Tagged , , , , , , , , , , , | Leave a comment

Sarizotan Trial #2 A Bit of Background

Posted on September 30, 2018 by melelllan

So, I was going to talk about how Sarizotan is supposed to work to help with daytime apnea this week, but I thought I’d give a bit of background on it instead. 🙂 Back in 2002-2003, Sarizotan was used in … Continue reading →

Posted in anxiety in Rett syndrome, Breathing issues in Rett syndrome, Newron, Orpan Drug Status, orphan drug designation, Rett Research, Rett Syndrome, rettland.org, sarizotan, screaming in rett syndrome, Trail to a Texas Trial, Uncategorized | Tagged , , , , , , , , , , , | Leave a comment

The Sarizotan Trial #1: Breathing-It’s Own Sort of Agony

Posted on September 20, 2018 by melelllan

We all know how much we wait for breathing- when our child has just been born, the seconds are eternities, agony, as we wait for that first cry. We all know the fear of that first night they sleep through; … Continue reading →

Posted in Breathing issues in Rett syndrome, Newron, Rett Research, Rett Syndrome, rettsyndrome.org, sarizotan, Trail to a Texas Trial, Uncategorized | Tagged , , , , , , , , , , | Leave a comment