Our Story of Regression and Down Syndrome

First we want to thank our family and friends who have been there for us the last two weeks. ME had an episode that we still don't have the words for, and we are still processing.

Our family and friends walked it out with us day by day, and we cannot thank them enough.

Two weeks ago, our sweet ME was brought to the ER. That was the beginning of our new normal.

But the story does not start there.

Our story starts three years ago.

ME was in school and she was thriving. She was in her third year in a school that is absolutely wonderful. The staff, the families, the experience was so wonderful.

Her last year I saw a change. My friends and family all shared their concerns as well.

ME was regressing. She was losing speech. She gained a sleep disorder.

She was a joyful child who became so much less joyful.

This is ME before she began to regress.

She became tearful. Quiet. And many skills were lost.

In that moment, I raced through my mind all of the scenarios that could make her regress.

Hormones? Something medical? Depression? Did someone hurt her?

We went to our doctor and many tests were run.

Her school turned to a behavior therapist, as did we.

Our cardiologist was consulted. ME was due for a heart check in June. Our ped recommended we move that appointment up. Our pediatrician was as concerned as we were.

Our cardiology appointment was un-remarkable. The echo looked great.

Until we heard this...

"ME's repair continues to look great. However, her heart rate is extremely low. We need to rule out many of the things that would lower her heart rate. If she drops to 30 while she is sleeping, it could be fatal."

My husband, my daughter, and I stood there, in shock.

Was this related to the new regression we were seeing?

After many tests, two weeks later, he said to us, "In rare cases, stress can cause a low heart rate. What ever it is that you think is stressing her out, I recommend you change that."

We took her out of school and decided to home school her.

This was the only place we had seen any stress. I cringed as I did this, because we love her school. So when I say this was the only stress we saw, I cannot say that I saw this as stressful.

It is truly one of the most beautiful places, and her teachers were amazing.

In spite of that, we took her out of school. Desperate to understand why this was happening.

Within two weeks, her heart rate was back to normal.

We saw much of the regression resolve, but truth be told we continued to see regression in other areas.

This regression continued over the last three years.

This regression was why I decided to open the Dream Big Cafe. I wanted to give ME an opportunity to socialize and give her a safe place to grow. Stretch her wings. Have opportunities to communicate.

Her speech was slowly going away, and I wondered if we opened a cafe, if maybe this would help her.

The cafe did not let me down. Bob would welcome her, and she grew to welcome him back. We asked her to bring a sandwich to a customer, and she did.

We worked on saying thank you. Words that once rolled off of her lips.

We expected her to get out of the car, and walk through the kitchen door. It was perfect. Our parking spot was right next to the back door.

So while we grew an awesome lunch experience, we used this as an opportunity to help ME gain her skills she was losing. It was therapy.

She grew so much from this experience. In more ways than I can count. It had been an amazing experience for her.

However, it did not stop her regression.

And more recently her regression hit rock bottom.

ME hit rock bottom on November 11. She was taken to the emergency room, and the last two weeks doctors have worked hard to help her.

Yesterday she was sent home from the hospital. One day I will be able to write about it. For now, we are taking time to process what just happened.

We are working with doctors to understand it.

We have the most amazing neurologist and psychiatrist who believe that they can help her.

We will do our best to share with you as we learn why this is happening.

Right now, we are so incredibly grateful for the exceptional care of LeBonheur Children's Hospital.

We trust our team of doctors, and we would like to ask all of you to continue to keep them in your thoughts and prayers as they continue to help ME.

We have been so grateful for our friends and family, who, literally, walked us through this every single day.

We are taking this new normal one day at a time. We hope that one day our experience can help others. For now, we are working hard to help ME regain lost skills, while our family takes time to process what we just experienced.

This entry was posted on Tuesday, November 26, 2019. You can follow any responses to this entry through the RSS 2.0. You can leave a response.

10 Responses to “Our Story of Regression and Down Syndrome”

  1. I don’t know how I saw this blog post, but my daughter went through DS regression. I was able to find help and she is doing great and living life again. I am a leader in a Facebook group to help others get this same help. Here is a link. Please answer all the questions to gain entry. We are cautious to keep the group a safe space. https://www.facebook.com/groups/386166221847431/?ref=share. You can also message me if you’d like. Our story is in the group.

  2. I follow Julia’s story-she knows what she’s talking about. PLEASE join her group. You’ll get so much good info there.

  3. I've also followed Julia's story. Julia can help you help ME. I hope you contact her.

  4. Please please please have them check her ammonia levels and rule out anything there. If they say, “ But her liver panel was fine.” Doesn’t matter. It’s easy to rule out. Remember, Angela wasn’t diagnosed until age 19. There are A LOT more people with Ds was long around with undiagnosed hyperammonemia.

  5. Please read this entire link. Contact me if you have more questions. It too Angela MONTHS to have enough symptoms for doctors to put it all together. By that time she had been in a coma twice


    1. Thank you Leah. I will pass this information along to my doctor.

  6. I love you Diane an ME. You are a great Mom! ME....you go girl, grow girl, you are AWESOME!

    1. Thank you my dear sweet friend. We miss you! Your love and support mean so much!

  7. Blessings to your entire family, Diane, and especially on ME. Know of my prayers and a great hug hug!

    1. Thank you Diane, the prayers mean so much to us!