An Introduction

Welcome to our little public journal – a place where my mom, Kim Fish, and I will share the research we find and links as a community resource for a journey we never expected to find ourselves on. Please read to the end, as this summary ended up longer than I intended. But, how do I fit all of this into a short piece to give a little insight into the world and struggle of having a loved one with Down Syndrome Regression Disorder.

For those who don’t know me – I am Qadoshyah Armendariz. The oldest of 11 kids. I was 16 years old when my youngest siblings were born – twins and the boy, Osiyyah, has Down syndrome. I’ve been there as an advocate, helper, therapist, and everything else possible for Osiyyah since he came home from the hospital.  Through his early years, I was very involved in the research for Down syndrome in finding ways to help kids with Down syndrome. Well, I’m back in the scene again, as we’ve been thrown a curveball.

Osiyyah was born in 2005; after a few months of doctor visits, we found Targeted Nutritional Intervention (TNI) – a lifesaver for him. Fast forward through his childhood and he grew up as an energetic, excited, happy little guy. Osiyyah didn’t have a lot of the childhood illnesses that can be common for kids with Down Syndrome – he was very healthy. His most significant delay was his speech – but his family understands him well, so it was ok.

He danced all the time, loved playing soccer, played on a co-ed soccer team with the family (not a special needs team – just a regular team), and was a happy, easy-going, and fun uncle to his growing number of nieces and nephews. He loved working out and had a very particular routine of running sprints, working out with weights, dancing, and pretend-play with music outside that would keep him busy for hours each day. He would then come inside and enjoy organizing his clothes to make sure his room was tidy.

That young man has slowly disappeared over the last few months. He had a few episodes of seizures starting in the early spring/summer of 2024. He was still acting himself though. Then, a decrease in the activities he liked to do started happening (mid-summer of 2024). At first, it was slow, but then it felt like all of a sudden, the energetic, happy, strong Osiyyah we all knew was gone.

In November of 2024, things started to get much worse – he started sleeping in until very late in the day (11am – 12pm); he started having trouble realizing when he needed to use the restroom, and he started dealing with constipation due to that. And he would sit on the couch all day with no desire to do anything, not even interested in doing something with someone. His eating took a turn for the worse – it became a very slow process, and he was not getting himself food anymore. His demeanor and attitude took a big turn – he has moments of complete sadness and meltdowns, crying for no apparent reason (he isn’t even sure why). And then there are moments of being very upset and angry at anyone and everyone. He wants to be left alone.

He still likes to organize his clothes – he knows how to use the computer, so can select the songs in his YouTube favorite music playlist and has a routine of moving around his shirts from one pile to another to finally have them all hung up and organized. This is about his biggest movement in the day, so my mom lets him do this – because it’s the happiest he is, and he is moving around (much better than sitting and doing nothing).

That is a brief overview of this situation we have found ourselves in. Truly a problem I never thought we would ever be in. Through this process, we discovered the very recent diagnosis and treatments available for Down Syndrome Regression Disorder (DSRD) from Dr. Santoro and a variety of other specialists and clinics.  We have already found a doctor in Oklahoma who is very proactive in treating DSRD and Osiyyah has seen her and is getting the necessary tests done to rule out anything else before we start further treatment.

There is MUCH hope for patients who have DSRD and as time permits, my mom and I will share those resources on here so that others can find answers easier. Finding answers has not been easy; we have had to be extremely persistent and diligent. But, the treatment shows SO much promise.

Osiyyah is already taking one medication as part of the treatment, and we have already seen some improvements. It goes in waves – some days are better than others. But, he has danced a handful of times. He has gotten himself food again. He has used the bathroom regularly again. They are small, but at the same time SO, SO promising. It is hard to see the positive when so many troubling issues remain.

We still have a long road ahead, and Osiyyah struggles greatly. But, we have an answer by God’s abundant kindness. It brings tears to my eyes to know that we may just be able to see our happy, excited Osiyyah again.

My mom and I hope to be able to share the research, resources, and as much information as we can about Down Syndrome Regression Disorder here so that others don’t have to go through the troubles we have had to in getting answers. Or, just so it becomes more known and more doctors can treat people with Down syndrome quicker before it gets too bad.

-Qadoshyah