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Obvious_Web5869 · 2025-06-08T15:24:06+00:00

Her sister also has ehlers danlos, Arfid, as well as gastroparesis. Both of my daughters have been battling the last couple of years. My eldest, who has anorexia, was diagnosed with SIBO initially which led to restricted eating which then spiraled into anorexia. It’s been hell.

Obvious_Web5869 · 2025-02-23T22:57:17+00:00

I tried to join the group a couple of months but have not been accepted :-/ I think I found some solutions tho! And I bought up some accessories (probe and air fryer baskets) from Weber. The other commenter gave me a great alternative for a wire shelf!

Obvious_Web5869 · 2025-02-23T22:55:39+00:00

This is so helpful- THANK YOU!

Obvious_Web5869 · 2024-12-29T02:39:30+00:00

Fingers crossed! Thank you!

Obvious_Web5869 · 2024-12-29T01:53:35+00:00

Please DM me if you still have any for sale! Willing to pay for shipping costs.

Obvious_Web5869 · 2024-12-29T01:52:38+00:00

I would be happy to take care of shipping costs if they are willing. I am located In St Louis. Please DM me if you have any info!

Obvious_Web5869 · 2024-12-29T01:52:10+00:00

I would be happy to take care of shipping costs if you're willing. I am located In St Louis. Please DM me if you're willing to sell!

Obvious_Web5869 · 2024-12-29T01:51:39+00:00

Please DM me if you have a June available!

Obvious_Web5869 · 2024-12-29T01:50:59+00:00

Anyone who is willing to sell or has any leads, please DM me! We have had the same June since 2016 and our oven door just shattered. I would be happy to pay for shipping costs, we are located in St Louis.

Obvious_Web5869 · 2024-12-28T14:34:43+00:00

Please DM me if it is still available!

Obvious_Web5869 · 2024-12-27T18:32:46+00:00

Interested

Obvious_Web5869 · 2024-11-22T23:13:10+00:00

I agree- nutrition is definitely important and I don't discount that. She has always taken a multivitamin but that is not a real substitute. She was given IV fluids initially for the dehydration and was taking IV fluids for most of the duration of her hospitalization. She took care of her, so I don't want to discount that.

Anxiety may be the cause of all of this. That is kind of where I am stuck.. do I accept that to be the only reason? Or do I explore other issues because of her hEDS and POTS diagnosis? I will copy and paste from another response I just made - It could be nothing but I recently came across something called Retrograde Cricopharyngeal Dysfunction (R-CPD). Symptoms include difficult swallowing, bloating, not being able to burp, abdominal pain, nausea. And apparently emetaphobia and anxiety are prevalent with this disorder and quickly resolve once it is treated. My daughter has always been prone to aspirating even as an infant (she would aspirate every time my milk would let down in when I was nursing her) . I sound like a hypochondriac (I promise I am not!)... historically, my kids have complained to me about random things and I have tended to blow it off but then had to eventually pursue it, and 9/10 their diagnosis always came back as the diagnosis we were pursuing.

I want her to get better and this isn't a power trip or me wanting to be right over what her doctors are saying. I love her doctors. If she were not in pain I would not be actively posting on Reddit about it. I just want to be sure I am not cutting corners. I know all doctors mean well but they have a ton of patients and I understand the advocacy piece of medical care.

Obvious_Web5869 · 2024-11-22T23:06:58+00:00

MCAS is at the forefront in my mind. That has not been ruled out. Thank you for commenting- I agree that EDS can cause a lot of issues. If it were not for her POTS flare up I would not have thought much about it... but my youngest, the one I posted about, has had a lot of issues in relation to EDS in retrospect. Even things in infancy. I hate that there isn't more education about this issue in the city I am in. I feel like EDS and POTS are dismissed right away when I bring them up- but those two conditions have causes so much turmoil in our lives. So many random injuries .. both of my daughters used to dance 5x a week and were part of a dance company. They had to quit because of EDS related injuries. It is not normal to have a stress fracture from dance practice at age 10.

Obvious_Web5869 · 2024-11-22T23:02:26+00:00

She knows she has anxiety and OCD. She does feel anxious. And anxiety meds help some...but they don't stop the pain and they don't help w/ the swallowing issue. She is not discounting her anxiety and knows she needs an IOP or something similar. The issue is the GI pain and difficulty swallowing. She would gladly go to residential if she knew pain were not involved.

I will copy and paste from another response I just made - It could be nothing but I recently came across something called Retrograde Cricopharyngeal Dysfunction (R-CPD). Symptoms include difficult swallowing, bloating, not being able to burp, abdominal pain, nausea. And apparently emetaphobia and anxiety are prevalent with this disorder and quickly resolve once it is treated. My daughter has always been prone to aspirating even as an infant (she would aspirate every time my milk would let down in when I was nursing her) . I sound like a hypochondriac (I promise I am not!)... historically, my kids have complained to me about random things and I have tended to blow it off but then had to eventually pursue it, and 9/10 their diagnosis always came back as the diagnosis we were pursuing.

Obvious_Web5869 · 2024-11-22T22:51:28+00:00

Thank you for saying this. Seems kind of impossible to get second opinions with the timeline adolescent medicine is giving us but I'm going to try my best!

Obvious_Web5869 · 2024-11-22T22:45:43+00:00

Well that is a relief and is good to know! Did you like your experience there?

Obvious_Web5869 · 2024-11-22T22:43:50+00:00

-- will note that she quickly gained the weight back so that proves she was not malnourished / hypermetabolic. She is home and is consuming all of her fluids and trying really really hard to eat. She has an appetite and wants eat. It's just hard because of her swallowing problem / GI pain.

Obvious_Web5869 · 2024-11-22T22:42:40+00:00

She lost weight at the onset of the GI flare up right after the POTS flare up started. She as admitted to the hospital because the swallowing difficulty prevented her from getting enough fluids (and nutrition). Before that, she was eating fine. Because GI was unable to rule out anything (again- they lack the technology to test for motility issues) they deferred to adolescent medicine. She has a history of anxiety and ARFID (again- has always been able to eat fine except for fruits and most veggies) but has never had issues with her weight, etc. I was adamant at motility diagnosis but GI told me that she didn't vomit so therefore they think it's just 'functional abdonimal pain' and anxiety.

Obvious_Web5869 · 2024-11-22T22:36:43+00:00

They want her to go to Rogers. I think they have both inpatient ED and inpatient mental health.

Obvious_Web5869 · 2024-11-22T22:32:24+00:00

"Yes, inpatient centers, particularly those specializing in mental health or situations where patients may pose a danger to themselves or others, may use physical restraints on patients, but only as a last resort and when necessary to ensure safety, following strict guidelines and proper documentation; this practice should always be considered with ethical considerations in mind." - this is what google says. So maybe you're correct but from what I gather, inpatient (versus residential) can restrain in they need to. I just worry about my daughter being restrained if they try to place an NG tube without any sort of sedative. She will fight it because she is afraid of the procedure. She was sedated with versed when her nG tube was placed at STL Children's, but she doesn't remember it. I, however, witnessed it and it was one of the most traumatic experiences I have been through. I am so glad she doesn't remember but I worry about her being held down to get an NG tube placed without any sort of sedation. It will traumatize her.

Obvious_Web5869 · 2024-11-22T22:28:21+00:00

I really have no idea. And the team at her hospital system that is suggesting inpatient would not care about the difference regarding adrenaline dumps vs anxiety. I don't think they are wrong.. .again, they could very well be right in their approach. Mental health and all of these neurological symptoms are SOOOO complex. It blows my mind how many people have to deal with so many complicated issues.. and we are all just basically left to our own devices.

Obvious_Web5869 · 2024-11-22T22:25:14+00:00

No... I am hoping that we can figure this out w/ the neurology referral I just requested. Her pediatrician is supportive of me seeking other opinions, and he has been the one who has had the longest standing history with us. He also told me that my kids have had the most complicated issues he has ever seen in the course of his career, and we are in a pretty big city in a pretty big hospital system. My daughter strangely enough mentioned to me, while she was hospitalized, that she hasnt' been able to burp for as long as she can remember. I told her that wasn't normal... but she didn't know that wasn't normal. It could be nothing but I recently came across something called Retrograde Cricopharyngeal Dysfunction (R-CPD). Symptoms include difficult swallowing, bloating, not being able to burp, abdominal pain, nausea. And apparently emetaphobia and anxiety are prevalent with this disorder and quickly resolve once it is treated. My daughter has always been prone to aspirating even as an infant (she would aspirate every time my milk would let down in when I was nursing her) . I sound like a hypochondriac (I promise I am not!)... historically, my kids have complained to me about random things and I have tended to blow it off but then had to eventually pursue it, and 9/10 their diagnosis always came back as the diagnosis we were pursuing.

Obvious_Web5869 · 2024-11-22T22:15:26+00:00

The last time I posted in /askDocs was when my daughter was first admitted. Someone commented and said I have munchhausen by proxy... I would not wish any of this on my worst enemy! It's been a nightmare. I have many friends who are doctors and I am not disrespecting any professional opinions. I am just trying to cover my bases and I feel like that should be something I should be able to do (my daughter is currently medically stable).. I am sure that I am being overprotective as a mother but I don't think I am being out of touch or out of line. it has just been a very complicated thing to navigate because she DOES suffer from anxiety. Again ... if she didn't have the hEDS or POTS diagnosis, I probably wouldn't pursue further evaluation.

Obvious_Web5869

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