I’m just on lithium now and am adjusting some. Not having my ADHD meds is a struggle, but if I’m stable for 3 months then we’ll experiment with other types of ADHD meds because of the caution around triggering mania.
I just have to stay on top of my hydration.
I’m seeing a pain doctor this week and a neurologist in June.
I have EDS.
Glue allergies run in my family.
I’ve read (and can link later if someone cares enough to request it) that because our tissue can be more friable (tears easily) that stitches can result in worse scarring (keloid scars?). I’ve known people who have suffered from excessive scarring after surgeries before they found out they had EDS.
I chose glue for the tongue tie release since I’ve found I generally am fine the first use of a glue (mostly taping for joint support or bandages) and then move on to rash the second or third time and then I can discontinue use. I think the glue was mostly gone by the first day or two, definitely faster than they expected, but it healed up nicely.
I had dissolving stitches post-partum, getting the stitches was the only thing I needed pain meds (nitrous oxide) for. Getting those stitches in 2015 was the most pain I’d ever felt until I got punched in the nose in Dec. 2023. No, the lidocaine didn’t help reduce the pain of the stitches at all. Another EDS thing – metabolizing medications differently.
I had some cysts removed from my scalp during quarantine – one had gotten infected and ruptured so it went from “cosmetic” to “medically necessary” according to insurance. The dermatologist used non-dissolving stitches. I took the front one out on my own when it started itching and it healed up nicely. I tried to leave the one in back in until my appointment to remove them. I tolerated an extra day or two of itching and then couldn’t stand it anymore and removed that one too. I regretted waiting because that one took forever to heal while the one I took out earlier was fine. Partially the delay in healing was because it kept trying to form a keloid scar – turns out skin picking can cause scarring, but can also reduce scarring.
So far the Patch bandages and hydrocolloid acne patches are the only ones I haven’t developed any reaction to.
OT question:
Does your child:
Close one eye or tip his or her head back when looking at something or someone?
My answer:
Huh, I do, it’s related to my convergence insufficiency. Especially when I’m tired. I can only wink with my left eye.
EDS ligament laxity – muscles need to compensate – convergence insufficiency therapy
Life changing chiropractic for about $20:
Dr. Ruch’s books (WAY cheaper than an adjustment):
Knees: AmazonSmile: GOT KNEE PAIN? Where is Your Tibia?: 9781977224149: Ruch, William: Books
Hips/pelvis (as important as the spine since they mess up everything else if they are off – it’s not just for birthing): The Level Pelvis Method: for Pregnancy and Birthing Ease – Kindle edition by Ruch DC, Dr. William J.. Health, Fitness & Dieting Kindle eBooks @ AmazonSmile.
Infographics video – processed foods taste good when eaten quickly and not so good when eaten slowly. I would guess that eating slowly makes it easier to taste the various additives.
Chew a bite of food 10 times (aim for 5-10 seconds) – it can reduce the desire for processed food. Unprocessed foods – chewing for at least 10 seconds helps unlock more nutrients and makes it easier to digest the food.
Obesity wasn’t a thing until 1800s, recognized as deadly mid 1900s? Ted Ed
1 hour activity daily kids?
average time daily eating 1.75 hr (ex. Spain meals 1 hour usually, up to 2 with family)
If meals are an hour – and you chew thoroughly and slowly – then you have time for questions and stories. Ask a question, take a bite, chew slowly and focus on listening to the answer. This avoids interrupting, eating with mouth open (small bites make it easier to close mouth), or talking with food in your mouth.
We use “chew, chew, swallow” to encourage finishing a bite before talking. We also wait until the person is done to say or ask anything to reinforce that slowing down didn’t cause them to lose their train of thought or their place in the conversation.
Small bites, lots of chewing. Put down utensils between bites. Wipe hands on napkins. Sip water between bites. Chewing slowly preps your digestive track – if you swallow before food is completely crushed and mixed with saliva, it won’t digest as well and could lead to heartburn, constipation, indigestion. Lack of chewing can lead to gastroparesis because there wasn’t enough chewing to signal stomach acid production. Or it can contribute to SIBO (small intestine bacterial overgrowth) because things don’t get moved through as quickly as they should either because the system wasn’t revved up or the food was harder to move. Things moving through the system slower also leaves it more open to fermentation or contributing to gut permeability and inflammation.
TLDR; Take small bites, chew at least 10 times and aim to completely liquify the bite by thoroughly mixing it with saliva before swallowing.
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):
If you do have Ehlers-Danlos, while there is a HUGE host of symptoms (comorbidities), one of the most commonly identified is joint subluxation.
Joint – I would define this as: where two or more bones are connected by ligaments (tendons attach muscle to bones and can cause issues too). Stub – list all joints, especially less common ones, like between each vertebra in the spine. Today I’m just focusing on educating myself on the thumb so I can address my pain.
Subluxation: https://youtu.be/zQh0PeyZvxY
Stub
Mast Cell Reaction (histamine dump)
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.
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.
Great Blog post so I don’t have to reinvent the wheel:
This is the document I put together to convince my spouse to go along with the release – after I had already had mine done. https://docs.google.com/spreadsheets/d/1Zk2vooxxK_8Zqszn64r0F5Y9qw8Pzq4Ye4IjSwy3Mr0/edit?usp=sharing
The Kathy from the Breathe Institute (SO GOOD with kids!) spent five minutes at the start of zoom checking out the kiddo’s function/status, then spent the rest of the time working with me to teach or develop new activities to achieve the goal for the coming week. Then it was on me to do the activities (Kathy also sent documents I could use to track) – rinse and repeat until ready for the surgery.
Kiddo has had multiple fillings and other than the burny stink from the laser and the nasty tasting topical anesthetic, it was way easier than any filling. The kiddo definitely either had more pain or lower tolerance for the exercises after. The first few days were spent just holding the boundary of not doing anything else until exercises were done. By the end kiddo was doing some of them with just supervision. The worst was the one where my nails kept poking, so I’d suggest two of those fingertip baby/pet toothbrushes.
UARS or Sleep Disordered Breathing & bed wetting: Upper Airway Resistance Syndrome (UARS) (lucohybridosa.com)
Breathe Institute: Lecture Files from The Breathe Institute (Dr. Zaghi)
Log March 11, 2022:
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:
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).
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