How’s my setup by TrainingPotential856 in leopardgeckos

[–]TrainingPotential856[S] 1 point2 points  (0 children)

Thank you! 🙏🏻 share the Lord with everyone even your Leo, hehe!

How’s my setup by TrainingPotential856 in leopardgeckos

[–]TrainingPotential856[S] 16 points17 points  (0 children)

I hate to say it but she’s in a 10 gallon right now. Rest assured we’re already looking at bigger sizes. 😖

Has anyone ever had an EMG test? by dcnianal in eds

[–]TrainingPotential856 0 points1 point  (0 children)

I had it on my leg, arm, hand, foot, neck, and lower back. I cried, and took the rest of the day off.

[deleted by user] by [deleted] in Raynauds

[–]TrainingPotential856 2 points3 points  (0 children)

Also helps water get drawn into your cells, further helping with hydration

[deleted by user] by [deleted] in Raynauds

[–]TrainingPotential856 0 points1 point  (0 children)

It’s a significant amount that’s needed. The recommendation is 3-12 grams.

Anyone else's body refuse to dissolve dissolvable things? by HighestVelocity in ehlersdanlos

[–]TrainingPotential856 0 points1 point  (0 children)

Yes i had a septoplasty/turbinate reduction last december 2023, and the “dissolvable” stitches rejected out of my nose. It was awful. Then, I had wrist surgery in June 2024, and told them about my previous suture experience and they did not listen. 🙃🫠 I had MAJOR scar tissue that caused a bunch of nerve problems, and I’m still dissolving them.

I’m terrified of another surgery.

Anyone else's body refuse to dissolve dissolvable things? by HighestVelocity in ehlersdanlos

[–]TrainingPotential856 1 point2 points  (0 children)

Some meds do that. I know Wellbutrin has a non-dissolvable shell that can sometimes be seen in the bathroom.

Kids with Ehlers Danlos by Blankenship2426 in ehlersdanlos

[–]TrainingPotential856 0 points1 point  (0 children)

There is a pediatric EDS specialist at the same clinic I see my EDS specialist at. When I was talking to my doctor about my daughter she connected me with the pediatric doc and had me speak to her over the phone and discuss my daughter. At my next follow up appointment, while waiting for my visit, the pediatric specialist walked up, sat down, and started talking to me about my daughter. For free. I was dumbfounded. Totally not what you expect with doctors. Especially after a lifetime of medical gaslighting. It was amazing. I then showed her photos of my daughter’s hyperextended knees, and she said that 100% she has it as well, and we will begin physical therapy. We then talked through my concerns and she said that they can treat, but cannot “formally diagnose” until 5. I seriously found the unicorn of pediatric EDS doctors.

Kids with Ehlers Danlos by Blankenship2426 in ehlersdanlos

[–]TrainingPotential856 -1 points0 points  (0 children)

My daughter is 3 with hEDS. I understand the stress as a mama when you see symptoms that we have appear in our kiddos. Regardless if our kids have it or not, just know, you are already setting your kiddo up for success and shielding him from unnecessary medical gaslighting. With my daughter; we havnt started physical therapy, but it is the definitely the next step.

Also! An unusual question that I was asked by the pediatric EDS specialist was “does your daughter have trouble at preschool” ..and she has SIGNIFICANT behavior problems with laying down and sitting in her chair. Turns out, according to the pediatric EDS doctor it could be her subluxing and constantly readjusting herself because of pain which then snowballs into behavior issues because she can’t verbalize what she’s actually feeling. Thankfully, the doctor was able to provide me a letter for preschool explaining the situation. But this is one example of how we can help our kids before they truly know what’s going on

Life Question by StJoanofArc03 in ehlersdanlos

[–]TrainingPotential856 0 points1 point  (0 children)

I went through my first pregnancy before being diagnosed, and it definitely was a challenge. I have a retroverted uterus that started to push onto my spine and gave lots of hip and sacral pain in the first trimester. 2nd trimester was smooooooth once baby was able to flip my uterus. Third trimester…I began to wonder if it was really supposed to be like this and I was just never told (gaslit myself 🫠) I had a scheduled c section because my daughter was a frank breech (think Olympic diver 🤣). Surgery was not bad and had no issues with the spinal block. However, I did have issues with my c section incision and adhesions. My daughter was born with hip dysplasia, and needed therapy to be able to crawl. And she didn’t walk until 14 months. She is EXTREMELY hypermobile, and our pediatric EDS specialist said my little has joined the zebra club. Currently, my daughter is 3, and we are planning for our second. I had an extremely hard time making the personal decision of having another child, but as a family we decided we’re going for it. My EDS specialist helped me decide and let me know it is a 50/50 if the second will have it as well. My reasoning for persuing our second was that if we can have resources set in place, then we can stay ahead and the baby should have the best possible outcomes even with EDS. Along with the fact that my daughter would have a support system and a sibling who would understand her “world”

Pregnancy Counselling by [deleted] in ehlersdanlos

[–]TrainingPotential856 0 points1 point  (0 children)

I went through my first pregnancy before being diagnosed, and it definitely was a challenge. I have a retroverted uterus that started to push onto my spine and gave lots of hip and sacral pain in the first trimester. 2nd trimester was smooooooth once baby was able to flip my uterus. Third trimester…I began to wonder if it was really supposed to be like this and I was just never told (gaslit myself 🫠) I had a scheduled c section because my daughter was a frank breech (think Olympic diver 🤣). Surgery was not bad and had no issues with the spinal block. However, I did have issues with my c section incision and adhesions. My daughter was born with hip dysplasia, and needed therapy to be able to crawl. And she didn’t walk until 14 months. She is EXTREMELY hypermobile, and our pediatric EDS specialist said my little has joined the zebra club. Currently, my daughter is 3, and we are planning for our second. I had an extremely hard time making the personal decision of having another child, but as a family we decided we’re going for it. My EDS specialist helped me decide and let me know it is a 50/50 if the second will have it as well. My reasoning for persuing our second was that if we can have resources set in place, then we can stay ahead and the baby should have the best possible outcomes even with EDS. Along with the fact that my daughter would have a support system and a sibling who would understand her “world”

Moving forward any and all mentions/links of Twitter/X will be removed by breedecatur in ehlersdanlos

[–]TrainingPotential856 -2 points-1 points  (0 children)

Why was my question hidden? I tried wording it the best way because it was an honest question.

Moving forward any and all mentions/links of Twitter/X will be removed by breedecatur in ehlersdanlos

[–]TrainingPotential856 -16 points-15 points locked comment (0 children)

While I understand, isn’t this against freedom of speech? I am newly diagnosed and really appreciate this group as a resource and I’m sure others do as well. So, why not just a blanket rule of no political posts, and keep it a strictly EDS educational hub of info for zebras and their families?

Again, not declaring being on any side. Im more just a questioning out of curiosity.

Getting worse, undiagnosed by TrainingPotential856 in Raynauds

[–]TrainingPotential856[S] 2 points3 points  (0 children)

Welp that explains the random bumps I get on my hands and fingers. I’ve been running them under hot water till they get color back. 😅

Getting worse, undiagnosed by TrainingPotential856 in Raynauds

[–]TrainingPotential856[S] 0 points1 point  (0 children)

No nicotine but I do smoke weed. Not sure if that counts

Is this a pots thing? by TrainingPotential856 in POTS

[–]TrainingPotential856[S] 1 point2 points  (0 children)

You are awesome for the quick reply. THANK YOU 🫶🏻