Are you double jointed? Or is it Ehlers-Danlos?

While hilariously and sadly Ehlers-Danlos (EDS) is a “rare” disease, it’s actually just an adaptation that can have both upsides and downsides.

It’s also very simple to check for, just go through this scale and see if you score 5 or more (or would have as a teen – often we develop stiffness or arthritis later and aren’t able to move the way we used to):

https://www.ehlers-danlos.com/assessing-joint-hypermobility/
For elbows and knees I wasn’t sure for a while, but apparently they aren’t supposed to go farther than straight.

Protein Shake

Right now I drink Orgain protein/nutrition shakes.

I had to stop taking all my vitamins because they kept triggering mast cell reactions.

The Orgain has the vitamins I was taking, but in a form that I can digest safely.

I may eventually try to figure out my own recipe using the Orgain powder since I’m not a fan of the packaging that is too hard to recycle.

Input Required

I had a friend ask for ideas, I’m generalizing here for anyone it might help.

Kiddo asks parent for proprioceptive input.

Parent either can’t or can only offer some input.

Kiddo can’t handle the refusal – they already are disregulated and needing input, so they escalate.

My suggestions came from my experience:

1 One, it’s ok to have boundaries, and the less someone respects your boundaries, the bigger the boundaries have to be.

I’ve described it like the following distance when driving – if someone in front of you or behind you is tailgaiting, you need a larger following distance. That way if the person in front crashes from tailgaiting you have time to brake. If the person behind is too close then you also need time to brake slowly so they don’t hit you like they would if you had to stop suddenly.

What this looks like is stopping your kiddo farther away and asking them to slow down and ask first. If they are too disregulated to respect the boundaries, then you know to take action to protect yourself and help them get regulated. For example my personal bubble with the kiddo is my head and my back, if he wants to go behind me he has to ask, and if he wants to touch my face he has to ask, and if he wants to give me a hug, he doesn’t have to ask unless he’s trying to come up behind me.

2 Two, if they are asking for input you can’t give, try to give them or help them get the input they need. I’ll offer “squeezies” – a big bear hug, “squishies” – squishing the kiddo between me and a counter/wall/etc. or “jumpies” – holding hands and the kiddo jumps while pushing down on my hands, similar to holding a gym bar or pushing down on a counter or table and jumping.

In this case kiddo wanted what we call “shoulder bup” – sitting on shoulders. The two alternatives I thought of was doing a piggy back and then leaning against the wall to take some of the weight off or doing the shoulder bup with leaning back so that most of the kiddo’s weight ends up on the back of the seat if available.

If those aren’t options, a headstand or handstand might help or the other types of input mentioned. Another one we like is “Timber!” where they call that and you are a tree that then falls down on them – usually sitting side by side and leaning into them.

Tongue-Tie

I’ll update this more as I have time.

I found out in January 2021 that I had a posterior tongue tie: https://www.youtube.com/watch?v=VilJPFTwNyk

I had it revised April 2021. It was life transforming.

Quick metrics:

  • Before – 15 minutes of household tasks meant stabbing back pain forced me to stop (some level of pain was there from the start)
  • After – 4 hours before the pain started
  • Before – required chiropractor every 2 weeks minimum for maintenance (Ehlers-Danlos)
  • After – 4 to 6 weeks between chiropractic adjustments
  • Before – wore multiple braces daily, all day
  • After – wear braces occasionally as needed for recovery or for prevention for specific tasks
  • Before – my zero on the pain scale was probably actually at 1 or 2, and usually I had hot spots that were 3 to 8

Update 10/28/2022

Since this came up at one of our discussion groups, I thought I’d fill in the curious.
While researching tongue tie stuff for the kiddo, I found out that I might have tongue tie. We were referred to the Breathe Institute. https://www.thebreatheinstitute.com/
I did a consult and it turned out that I had more severe of a tongue tie than I realized – the floor of my mouth was stretching up to allow more movement. I think this link skips to the part of the video he addresses that: https://www.youtube.com/watch?v=G9GrUw7YJD0&t=2106s
I also found info on the fascia system and Tim King was able to tell me just from talking on the phone that my “migraines” were actually cervicogenic headaches. Once I dug more into the fascia stuff I decided I needed to try the release to see if it helped with those and my rib pain. https://www.youtube.com/watch?v=w3SPxFR7wcA
I did a month of exercises and stretches to prep for surgery – mostly practice for after surgery and isolation/awareness/control exercises for my tongue. Surgery itself was super easy and fast, I think applying lidocaine (I need more than most due to the Ehlers-Danlos Syndrome) took as long as the surgery. I parked at 10:37 in Walnut Creek (he comes up regularly) and was back in the car at 11:07. We did laser and glue due to my concerns about scissors and sutures with the EDS and the only bad part was the burning smell. I only did one day of ibuprofen and then ice pack under the chin the second day.
As soon as I stood up out of the chair my posture was drastically improved and my ability to tip my head back with chin up and to twist as well. I haven’t had rib pain since the surgery even with only having one adjustment a month (instead of at least 2) and my cervicogenic headaches went from 3 solid days at least twice a month to a few hours in the evening and the next morning prior to my period (when I usually get one).

Water

“Water allows your kidneys to function properly and filter everything they need to, and allows us to eliminate effectively and not be constipated,” Melton says. “People who don’t get enough fluids in their diet tend to be constipated.” And that’s not all. The single biggest cause of painful kidney stones is chronic dehydration. When you don’t get enough water, calcium and other minerals build up in your urine and are harder for your body to filter out. They can form the crystals that make up kidney and urinary stones. Doctors who specialize in pediatric kidney problems report seeing more kidney stones in children in recent years, and they believe it’s because of a combination of factors. Many kids aren’t drinking enough water. Also, many kids are overweight and eat a poor diet. “I’ve been in this field for over 30 years, and I’d say that until about the last 10 to 15 years, you almost never saw stones in kids,” says Robert Weiss, MD, chief of pediatric nephrology at Maria Fareri Children’s Hospital of the Westchester Medical Center in New York. “Lately, the frequency is increasing dramatically.” How Much Water Do You Need? How can you know if you’re getting enough water to keep your metabolism cranking at peak efficiency and your digestive system functioning? The formula used to be “one size fits all” — eight 8-ounce glasses of water a day. But that’s changed, experts say. “It depends on your size and weight, and also on your activity level and where you live,” Nessler says. “In general, you should try to drink between half an ounce and an ounce of water for each pound you weigh, every day.” For example, if you weigh 150 pounds, that would be 75 to 150 ounces of water a day. If you’re living in a hot climate and exercising a lot, you’d be on the higher end of that range; if you’re in a cooler climate and mostly sedentary, you’d need less.” https://www.webmd.com/diet/features/water-for-weight-loss-diet#:~:text=Water%20allows%20your,you%E2%80%99d%20need%20less.