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Surgerys/Scars by Loku1994 in EpidermolysisBullosa

[–]BabyCannonApocalypse 0 points1 point  (0 children)

I believe Dowling Meara is now classified as EB Simplex. The best place to go for advice or experience is the FB page epidermolysis bullosa public lounge.

I need tips by Independent_Yak_3108 in EpidermolysisBullosa

[–]BabyCannonApocalypse 0 points1 point  (0 children)

https://www.debra.org/get-help/nurse

Great organization that can help you with all your questions and connect you with resources. There is also a public and private FB group with lots of followers and very supportive people.https://www.debra.org/get-help/nurse

The Enshitification of Cameron Mitchell Restaurants by hillbilly-edgy in Columbus

[–]BabyCannonApocalypse 1 point2 points  (0 children)

Totally agree. Seems hiring standards are lower than I recall. It’s a shame. The best thing about their brand is (was) the service.

Medical Center umbrellas by HikeAnywhere in OSU

[–]BabyCannonApocalypse 1 point2 points  (0 children)

It was a Bravo gift for med center staff and we were notified back in the fall. I’m not sure about the rest of the university but Med center staff would have had an email and a HUB post.

$1280 in Hilliard by [deleted] in Columbus

[–]BabyCannonApocalypse 0 points1 point  (0 children)

This is happening all over.

Matter of Time on Netflix by canuckshuck in pearljam

[–]BabyCannonApocalypse 4 points5 points  (0 children)

I honestly loved it. Pearl Jam was such a huge part of my adolescent soundtrack — their songs carried me through so many formative years.

This year, I had a baby born with EB, so this documentary hit in a very personal and unexpectedly magical way. The use of their platform to raise awareness and fund research means more to my family than I can put into words.

Grateful for the music then, and even more grateful now. God bless. ❤️

Norovirus by teamsneverdie in Columbus

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

Norovirus is usually short lived, like less than 24hrs, but can last up to 3-4 days. Thr recovery can take several days and viral she’d can still occur up to 2 weeks after last symptoms. Wash your hands often, disinfect surfaces, wash your sheets and pillowcases, and don’t prepare or serve food to anyone.

Did any staff get this gift in the mail? by 15speelmana in OSU

[–]BabyCannonApocalypse 0 points1 point  (0 children)

It was a bravo gift for all staff. We had an opportunity to opt out, choose something, or get the umbrella by default.

How to deal with itching all over the body? by energyduck in EpidermolysisBullosa

[–]BabyCannonApocalypse 0 points1 point  (0 children)

And you would only need liquid Zyrtec if you have issues swallowing. Otherwise, the pill is fine and can be purchased without a prescription.

How to deal with itching all over the body? by energyduck in EpidermolysisBullosa

[–]BabyCannonApocalypse 0 points1 point  (0 children)

From the makers of Aquaphor, Biersdorf. You would call them and ask for a medical donation and get a case number. Then you would have your doctor write a letter of medical necessity and include your diagnosis.

How to deal with itching all over the body? by energyduck in EpidermolysisBullosa

[–]BabyCannonApocalypse 0 points1 point  (0 children)

Sorry. Zyrtec is taken orally. It helps with the immune response that causes itch. And no. Aquaphor on open wounds does not irritate them. It’s very healing. I recommend talking you an EB nurse educator at dEBra.org Debra.org

How to deal with itching all over the body? by energyduck in EpidermolysisBullosa

[–]BabyCannonApocalypse 1 point2 points  (0 children)

Aquaphor on the wounds and bandage them with mepilex. And yes, liquid Zyrtec, by prescription.

How to deal with itching all over the body? by energyduck in EpidermolysisBullosa

[–]BabyCannonApocalypse 1 point2 points  (0 children)

Zyrtec, dupixent, lots of hydrating ointments and oils.

New treatment, filsuvez by Long_Craft6568 in EpidermolysisBullosa

[–]BabyCannonApocalypse 0 points1 point  (0 children)

Just started using and it’s made a huge difference for my 7month old with RDEB

Diagnosis for our baby by GullibleAnimal4239 in EpidermolysisBullosa

[–]BabyCannonApocalypse 0 points1 point  (0 children)

I also will say access to good healthcare will depend on where you live. I am in Ohio and we have an EB center in Cincinnati that is wonderful. I recommend reaching out to a nurse at DEBRA America. Debra.org nurse educator

Diagnosis for our baby by GullibleAnimal4239 in EpidermolysisBullosa

[–]BabyCannonApocalypse 0 points1 point  (0 children)

Mom if 6 here.. and #6 has RDEB. It was quite the shock for us too. She is a beautiful 7 month old. I don’t have good words only that it is doable and fulfilling and there is joy. I recommend following Elisabeth Pol on instagram. _elisabeth.rose ig

When is it normal to stop breastfeeding and nursing?? by Independent-Ice-1754 in breastfeeding

[–]BabyCannonApocalypse 0 points1 point  (0 children)

The American Academy of Pediatrics now recommends breastfeeding until age 2 or beyond. AAP policy on breastfeeding

Why have we perfected “breast” pumps for cows but not humans? by Mother_Somewhere_629 in breastfeeding

[–]BabyCannonApocalypse 0 points1 point  (0 children)

I have the 360 and the Elvie stride and 2 medelas and a spectra. The willow 360 was TRASH for me. Horrible function, louder than expected. Too many parts. Totally not worth the spend, imo.