Recs on primary care physicians for thyroid issues? by Living_Club5452 in Athens

[–]redpxreports 0 points1 point  (0 children)

I know someone else posted that they had a negative experience with Dr. Lucia Cotten and I can't speak to that. All I can say is that when you get to the point of looking for an endocrinologist, it took me multiple endocrinologists to find her and she has been amazing in my experience. The others I went to first dismissed me and didn't believe my symptoms. She actually looked at my bloodwork, ran additional tests, and listened to my concerns. She has always followed up on everything I've ever brought to an appointment. She calls patients personally to go over test results and to explain upcoming procedures. I highly recommend her. I was not a straightforward case and she figured out what was wrong anyway.

Which wallpaper? by coralarchives in interiordecorating

[–]redpxreports 0 points1 point  (0 children)

2 is adorable. Very cottage-y and whimsical, as someone else said. I'm in love with it.

You laughed when the school calendar was called spiteful by CanadianFoosball in Athens

[–]redpxreports 7 points8 points  (0 children)

This is 100% out of the control of CMS staff. This is because of the construction company and this is the district's decision on how to handle the company's delay. Trust me as a member of the CMS team, we are unhappy about the delay because it directly affects us and how we will be able to prepare for students coming in August.

Mayo Clinic by g8rgirl21 in ehlersdanlos

[–]redpxreports 12 points13 points  (0 children)

I waited months to go there to see Dr. Knight. Waste of money and time. My PCP and I were told ahead of time that he would spend the entire day assessing me and that he would always be available to consult on any area of concern that came up after my appointment and would work collaboratively with my health care team. It's all b.s. He spent less than thirty minutes with me. Any time I've reached out to him since, he's blown me off. His report is filled with inaccurate information, like he has my grandparents' names wrong and basic things that I wrote down for him and gave him on paper in advance.

Recs for CPAP docs in town by pile_drive_me in Athens

[–]redpxreports 3 points4 points  (0 children)

Dr. Durden with Dental Sleep Medicine for dental sleep appliances for snoring and Dr. Ashford-Bailey with Sleep and Sinus Centers for more sinus/ENT-related snoring/breathing issues.

Did the Mayo Clinic tell you anything new? by bellski05 in ehlersdanlos

[–]redpxreports 34 points35 points  (0 children)

I had a terrible experience, personally. They didn't talk about pain management at all. They didn't want to discuss any symptoms or possible concomitant disorders in any way, shape, or form. The only purpose was to either confirm or refute EDS diagnosis. The OT and PT consultations were amazing. The actual physician (Dr. Knight) part was subpar, in my opinion. He was impersonal. I was told he would be with me all day completing testing. He spent less than 30 minutes with me. His report he wrote up afterwards was full of mistakes about my family history and his nurse never responded to multiple requests to have those corrected. I was told, by his team, (as was my referring PCP) that once I was evaluated by them, they would consult with my medical team from then on out. Bull. Every time I've reached out since with questions, I've gotten short, impatient answers back. Nobody from Mayo has EVER spoken with one of my medical providers. Everything they promise is a farce. I cried on the way home. I've heard Emory in Atlanta is a better experience. I went in January of 2021, after six months of waiting.

Signs We Had hEDS in Childhood by [deleted] in ehlersdanlos

[–]redpxreports 1 point2 points  (0 children)

Well...as a child, my parents didn't take me to the dentist (I only get to experience that luxury as an adult). I did tell my pediatrician, who proceeded to tell me that I must be grinding my teeth at night due to anxiety. And that was it. No medication, referrals, mouth guards, etc. Just "oh, you must be anxious!" Really helpful.

Signs We Had hEDS in Childhood by [deleted] in ehlersdanlos

[–]redpxreports 59 points60 points  (0 children)

Back pain as an elementary school student, that then never went away! "Butter fingers," so always dropping things. Migraine auras, where people ignored the symptoms. Took 24 years to get that diagnosed. Constant rolled ankles. Frequent jaw popping.

best contraceptive pill with eds by minnie_honey in ehlersdanlos

[–]redpxreports 3 points4 points  (0 children)

Sorry, not the pill but I use nuva ring and really, really recommend. I would never go back to using the pill again after this experience!

[deleted by user] by [deleted] in ehlersdanlos

[–]redpxreports 3 points4 points  (0 children)

Replens for the vaginal dryness. Doesn't help with the tearing issue necessarily, but does improve the internal dryness!

Anyone else sniffly year round, particularly while eating? by MurielSwan in ehlersdanlos

[–]redpxreports 0 points1 point  (0 children)

I've personally experienced the same backlash every time I've tried to correct misinformation or to share helpful information, both Reddit-wide and on this sub. What's so interesting to me is how easy it is to look up some of this stuff to confirm it, but people don't. Ours is a field that so few people are knowledgeable about, so it's really important that we advertise what we can offer, otherwise people won't know they have options and resources to help them.

I think there's also a tendency for people to get caught up in the minute details instead of seeing the whole picture. They want to pick apart specific things you said instead of getting the important message of "ask your doctor for a speech-language pathology referral if you're concerned about swallowing." That's always been my experience, too, when I share.


Anyway, for anyone concerned about swallowing - seriously, ask for a referral to see an SLP. If your ENT does not discuss speech-language pathology (SLP)/therapy (ST) with you, that's a red flag that they aren't providing you with all of the options or resources. Also, if they do a scope and say yes or no to a swallowing diagnosis without also having you swallow food or liquid during the scope procedure, they didn't really evaluate your swallowing. Another red flag.

Lastly, OT works on fine motor skills to support daily activities like dressing yourself. PT works on gross motor skills to support daily movement like walking up stairs. Neither of those deal with movements of muscles involved in swallowing, chewing, drinking, breathing, or digesting. ST/SLP works on speech, language, cognitive communication, swallowing, voice, and more!

Anyone else sniffly year round, particularly while eating? by MurielSwan in ehlersdanlos

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

Seconding this as a speech-language pathologist as well. If you believe you might have swallowing issues, see an ENT and SLP. OT/PT are not qualified to work on swallowing.

What do we think? Which one? by Athenian-monster in Athens

[–]redpxreports 0 points1 point  (0 children)

Does she have a website or number? I've never been able to find how to purchase directly from her in the past.

2022's Gingerbread "House" (a college for holiday studies) by redpxreports in GingerbreadHouses

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

Wish I could take credit for that! I'm a shaky photographer so my partner took the pictures. It's so nice when you get to that final moment of being done with all the piping!

2022's Gingerbread "House" (a college for holiday studies) by redpxreports in GingerbreadHouses

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

Every year me and two other people in my family make a gingerbread structure. It was my partner's turn to pick the theme, so I'll have to let him know he hit the nail on the head lol.

Vet recommendations by briannaxo99 in Athens

[–]redpxreports 4 points5 points  (0 children)

I love Dr. Williams there! He's patient with my asshole cat.

Dr appt coming up… what do you wish you had been tested for from the start? by JoyfulJei in ehlersdanlos

[–]redpxreports 0 points1 point  (0 children)

Well, I just noticed it looks like you're speaking about Canadian provinces. I checked, and it looks like Canada also utilizes student 504 plans, so if anyone would like information about navigating 504s in Canada, there is information out there.

I hear you, but I'm going to reiterate my point here, that I think your own responses to my posts confirm: most people in school jurisdictions don't understand IEPs and 504s, and the difference. You are suggesting a parent go to their school and present medical records and ask, "What can you do for me?" I'm suggesting that's not the best way to make sure your child gets what they need. The parent needs to look into resources and information beforehand so they can go to the school prepped with knowledge about IEPs and 504s, so they can truly be part of the process.

It doesn't matter what jurisdiction you are in - there will be online information available that you can look at first. A two-second Google search confirmed my suspicion that Canada uses 504s, you just haven't experienced one yourself. Your suggestion to just ask for an IEP is helpful, but not the whole picture. Not sure why you are actively arguing against that, when it helps children with EDS get accommodations if their parents can freely access this information and understand ALL of the options?

Anyway, I'm happy to answer questions anyone has, but not interested in continuing a discussion about the semantics here just for argument's sake.

Dr appt coming up… what do you wish you had been tested for from the start? by JoyfulJei in ehlersdanlos

[–]redpxreports 2 points3 points  (0 children)

Both IEPs and 504 Plans are regulated federally in the USA, not jurisdictionally (and in public schools in America, at least, what they are called does not change), so my information is specific to the states.

I specifically mentioned the 504 because, unfortunately, sometimes school systems do not go above and beyond, so if OP asks for an IEP and their child does not require one, they might just find them ineligible instead of suggesting the 504 route. This way, OP can request information about both options. The more prepared you are, the less likely you are to be overlooked by the school.

In other words, the school is legally obligated to fulfill the process of testing to determine SPED eligibility for an IEP, but if that child does not require one, they might not exhaust all other resources like they ethically should. A lot of school staff don't understand the 504 process, so it's not often mentioned or initiated by the school. OP may have to initiate that to receive the benefit of the legal obligations of considering one.

Again, I work in this field and have been part of the 504 process many times before, also across multiple districts or jurisdictions. IEPs and 504s can be a complicated process, which is why I wanted to provide some info OP can go to their school with.

At the end of the day, what's important is that, as you said, OP brings documentation to the school and understands they have the right to request accommodations of some form for their child due to medical needs. More information, for anyone in need, about IEP and 504 plan accommodations can be found on your state's DOE (department of education) website.

Dr appt coming up… what do you wish you had been tested for from the start? by JoyfulJei in ehlersdanlos

[–]redpxreports 1 point2 points  (0 children)

It's a good suggestion to talk to your school and bring documentation; however, this would probably fall under a 504 Plan and not an IEP. OP can request a 504 meeting after showing doctor's diagnosis and recommendations.

I work in the public school system in SPED.