Category: Uncategorized

U.S. meet up in Portland Summer 2024

Leave a comment

The annual American summer meetup for families to connect is back and scheduled for June 28-30 near Portland, Oregon. This special weekend is for families from around the globe to connect in person, learn more about ATR-X and the wide spectrum we navigate as families and caregivers, where we celebrate successes and share sorrows and trade tips and tricks for helping our kiddos be their best selves. This event is organized by the volunteers at the International ATR-X Foundation and more information can be found on their Facebook page.

Participate in ATR-X Research!

Leave a comment

The ATR-X Foundation of the Netherlands is conducting a survey to help us learn more about the “natural course of the ATR-X syndrome.” All parents of children with ATR-X, alive or deceased, are asked to complete a questionnaire so we can learn more about every individual with ATR-X. Surveys are asked to be completed by summer 2020.

Here’s a note from the Stichtung ATR-X Syndroom Netherlands:
“Everything is ready to start the international research into “the natural course of the ATR-x Syndrome”. The questionnaires are ready to be completed!

The aim of this research is to get a better picture of the symptoms and the course followed by the ATR-x syndrome. We want to know exactly what the symptoms are, at what age they arise, what other problems arise over the years and what the life expectancy is of people with this syndrome. Specifically, we want to learn more about the gastro-intestinal problems that occur with the ATR-x syndrome and also learn more about the symptoms that resemble epilepsy but where epilepsy cannot be determined.

In addition, we want to identify the psychosocial consequences for parents of children with the ATR-x syndrome, so that parents can be better guided in the care of their child.

The first results will be announced next year at the international ATR-x meeting in the Netherlands, but of course those who participate but cannot come to this meeting will also receive these results!

We also ask parents whose child is deceased to complete the questionnaires. We realise that it is confronting but this information is extremely important to know and to help others in the future. The researchers will handle the data with the upmost discretion.

If you have several children with the ATR-x Syndrome, we would like to ask you to complete the questionnaires separately for each child. We realise that it will take a lot of time, but we have split the questionnaires per subject so that not everything has to be filled in at once. Feel free to fill in everything you think of. We estimate that completing the questionnaires takes approximately 15-20 minutes each. Some may take longer and some will take less time. We would like to ask you to please fill them in within 3 weeks.

If you want to participate in this study, please send an email to info@atrxsyndroom.nl with:
– the name and date of birth of your child in day-month-year (and if applicable also the date of death)
– residence and country
– your consent on letting us save your email address in order to send you the research results and any information about this research in future. Your email address will not be used for any different purposes than that.

This information will be entered and then an email will be automatically sent to you with a code to open the questionnaires online. All data go directly to the researchers and will be anonymised, the ATR-x Foundation in the Netherlands has no access to this data.

We hope that many families will participate!!!   Together we are strong!”
Photo courtesy of Glenn Carsten Peters/Unsplash

2019 ATR-X Meetup in Hartford, CT

Leave a comment

American families with ATR-X loved ones are having our annual meetup in Hartford, CT, on July 19-21. The loosely organized weekend will include lots of time together to talk and bond over our shared experiences, a talk on Cortical Visual Impairment (CVI), a music therapy session, an update on the International ATR-X Foundation, some Pepe’s pizza (hopefully!) and a trip to the Mystic Aquarium.

Reach out to me if you need details. AllAboutATRX@gmail.com

Hope to see everyone there!

Best Bibs for Heavy Droolers

Leave a comment

SO. MUCH. DROOL.

Our boys drool a lot and while some have undergone more drastic measures (such as clipping the salivary glands or using Botox to paralyze them) to curb this issue, depending on the severity, most of us just rely on good bibs. Everyone has their own preference but I’ve come to love bandanna-style bibs made out of sweatshirt material. They absorb a fair amount and keep my guy looking looking like the stud he is.

Here are some of my favorite brands:

  • Stadela – $15 for a 4-pack and some of the best designs I’ve seen on bandanna bibs. Available on Amazon (where you can sometimes find an 8-pack for $17).

Screen Shot 2019-02-28 at 12.00.22 PM

  • KiddyStar – Larger format bibs to catch more drool. $22 for 5 as of time of writing. Current favorites. Buy here on Amazon.
    Screenshot 2024-01-03 at 3.28.52 PM
  • TheAZBaby – Currently unavailable but hopefully back in stock soon.
    $16 for a set of 8 on Amazon. Love solid colors so stains are easier to hide (especially on the black). A similar brand is Kea Babies on Amazon.

Screen Shot 2019-02-28 at 12.02.59 PM

  • Bibble Plus Dignity Bibs – This UK company makes bibs specifically for older kids & adults. I love the name “dignity bibs.” The price depends on the size you buy.

  • SeenIn Bibs – Another UK company they have a lot of great options for kerchief bibs (including some with rubber tips for chewing, and a 2-in-1 option so you can easily flip it when one side gets too wet, without changing the bib entirely).

Cheeky Chompers Neckerchew
Flip Kerchief

And finally, I have to give a shout out to my local Once Upon a Child store as I was there looking for a Halloween costume one day and they had a huge bin of sweatshirt bibs (all brand new) with no labels, sold for $1.50/each so I did a huge stock up which allowed me to get rid of all the embarrassingly stained bibs I’d been holding onto.

Have a great bib brand you love? Let me know!  Email allaboutatrx@gmail.com

Sensory Brushing & Joint Compressions

Leave a comment

The first exercises we were taught to do with Ryan at home every day were joint compressions and sensory brushing. The first time I saw sensory brushing anywhere else was in the (terribly depressing) movie Tully with Charlize Theron and that’s when I realized it was a thing other people maybe did too. Read more below about sensory brushing and joint compressions. It’s easy to incorporate into your daily routine.

Here’s a video I found on YouTube that shows both, though we used a different brushing technique. (She looks angry but she’s not.)

Sensory Brushing:
Many kiddos with neurological disorders issues have overly sensitive or defensive reaction to touch. Even though we’ve been doing this for 3 years, I just found out there’s an official name for “sensory brushing.” It’s called Wilbarger Protocol for Sensory Integration, or brushing therapy for short. It requires having a plastic surgical brush like this (a surgeon friend gave us a few from his hospital, for free), and brushing your child’s body wherever they are most sensitive. For our kiddo, we would brush his hands and arms every morning in long strokes. His therapist would do his entire upper torso. And in the video above, you see some people do the entire body. This is meant to deliver strong sensory input and teach the child’s boy to self-regulate this input.

Joint Compressions:
These are designed to send proprioceptive information to the brain, helping the body understand its place in space and where certain joints are within the body without visual cues. Proprioception is what allows you to touch your finger to your nose with your eyes closed. You understand where your body parts are. This isn’t necessarily the case in people with neurological disorders. The ability to understand where limbs and body parts are is disrupted because the signals that send the stimuli to the brain do not fire correctly. So repeated joint compressions daily may help the body understand where certain body parts exist and may help the individual learn to move his body independently one day.

Doesn’t hurt to try, right?

PS – I also thought this was an interesting take on “brushing” from a blog run by an “anonymous OT.”

Screen Shot 2019-05-18 at 10.23.50 PM

*Please keep in mind I am not a medical expert or trained therapist of any kind. Just a mom who worries too much and reads too much and always thinks she isn’t doing enough. But figures she should share some of what she learns.