The Daffodil Trial Blooms under ACADIA’s Care! [IMG] ACADIA...

The Daffodil Trial Blooms under ACADIA’s Care!

ACADIA announced the results of the Daffodil Trial (ages 2-5) on Thursday, March 5. Just as expected, since the FDA approved Daybue use in children 2 and up, the results were very positive. You can read the announcement- HERE

You can also read the actual publication in MED

Some things to note, the rate of diarrhea was almost the same in adults and children, 85% and 80% respectively. The incidence of vomiting was 29% and 53.3% respectively.

There was steady improvement in all the children; however, if we look at the number one concern of parents/caregivers, verbal communication topped the list.

“Caregivers (n = 7) who participated in the study exit interviews most frequently identified inability to communicate as the most impactful symptom of Rett syndrome (42.9%) and improved communication as the most desired treatment effect (71.4%). The most frequently reported improvements by caregivers during the exit interviews were in verbal communication (ability to say new words) (71.4%)”

This is a tremendous achievement. The other two highly noted improvements were “…improved eye contact (57.1%) and improved hand use (57.1%).”

I hope to delve a bit more into the nitty gritty of the results and see if there’s any consistent set of differences of improvements between the Lavendar (Adult) and Daffodil (2-5) trials. Regardless, the published data confirms why the FDA approved for use in this younger population. What a win all the way around!

Years ago, I wrote a blog post and in it I wrote- one day a doctor would give the diagnosis of Rett syndrome and then hand them a prescription. That day is here. On average, most children are diagnosed at the age of 2.7. Daybue can be given at 2. Pretty darn amazing. It reminds me of Pandora’s box. Rett syndrome let loose all sorts of difficulties, but then right there at the last came Hope. Daybue isn’t perfect, it isn’t for everyone, but after all that’s come before, it has finally brought Hope and Hope is like a rainbow that shines even when it’s still raining-A reason to smile, a reason to dream, a lightness in the storm.

One of my favorite poems is “Daffodils” by William Wordsworth, it encompasses a feeling I often have on looking back on something and have it be the thing that makes you smile and gives you a sense of calmness. I think it so appropriate.

I wandered lonely as a cloud
That floats on high o’er vales and hills,
When all at once I saw a crowd,
A host, of golden daffodils;
Beside the lake, beneath the trees,
Fluttering and dancing in the breeze.

Continuous as the stars that shine
And twinkle on the milky way,
They stretched in never-ending line
Along the margin of a bay:
Ten thousand saw I at a glance,
Tossing their heads in sprightly dance.

The waves beside them danced; but they
Out-did the sparkling waves in glee:
A poet could not but be gay,
In such a jocund company:
I gazed—and gazed—but little thought
What wealth the show to me had brought:

For oft, when on my couch I lie
In vacant or in pensive mood,
They flash upon that inward eye
Which is the bliss of solitude;
And then my heart with pleasure fills,
And dances with the daffodils.

– William Wordsworth (1802

Thank you to Acadia for being able to get this done for all our kids. ❤



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