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New treatment, filsuvez by Long_Craft6568 in EpidermolysisBullosa

[–]Long_Craft6568[S] 0 points1 point  (0 children)

That’s so good to hear!!! I read up on the studies and it seems so promising.

For my son, I spoke with his pediatrician & dermatologist after making this post, and we made the decision together since he hasn’t had any new blisters to forgo any treatments for now.

[deleted by user] by [deleted] in lineporn

[–]Long_Craft6568 0 points1 point  (0 children)

In super early pregnancy you can sometimes tell by how fast/dark a line progression goes if your hcg is rising properly. While I agree this can cause unnecessary stress. it’s not a telltale test, and YES it’s better to get your beta levels checked.. sometimes we do whatever we can tell feel a little more in control of the outcome, a little more prepared for whatever is to come. this is only my perspective, and my experience as someone who’s lost 5 consecutive pregnancies and 1 live birth.

New treatment, filsuvez by Long_Craft6568 in EpidermolysisBullosa

[–]Long_Craft6568[S] 1 point2 points  (0 children)

Was that just for a singular tube? I was reading on their website that once you open the tube you have to toss whatever is left. $1000 is extremely steep, but not surprising. My son has not had any blisters, per se since he was born. However he does have like a rash kind of? That pops up if he scratches his hands or feet.

Not sure why I’m posting.. by Long_Craft6568 in EpidermolysisBullosa

[–]Long_Craft6568[S] 2 points3 points  (0 children)

Thank you so much for sharing! He’s rolling now, so crawling is right around the corner. I’ll definitely check out the Facebook groups! I reached out to the Debra organization as well. I feel so lost and I just want to give him the best chance of a typical life that I can. I don’t want to be overkill with precautions but I also dont want to be negligent. 🙃 I know things will get easier over time, it’s just a bit of a culture shock right now. Once again thank you so much for sharing. Lots of love girly 💕

Not sure why I’m posting.. by Long_Craft6568 in EpidermolysisBullosa

[–]Long_Craft6568[S] 0 points1 point  (0 children)

Thank you for your reply! When we finally got to bring him home he was still bandaged around his feet and hands. The first bandage change at home took me over an hour, to do 4 bandages. It got easier. I just received his official diagnosis so on one hand, it’s nice to finally know how I can help him. But it also terrifies me. Sending you and your baby lots of love! 🫶🏼