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After 3 horrible months of Accredo, we were able to switch to another specialty pharm. One (only one!!) 20 min phone call later, and her med is all set. Correct copay was calculated, and the rep was very educated about the process. Amazing job Giant Eagle Specialty Pharmacy!

Please read and share. We need to expose the terrible practices of insurance companies that are overruling doctors and harming patients.

I will never get tired of seeing her run! She ran the 1600m (1mile) and 800m (1/2mile) at track. This is a feat for any 12yr old. But, knowing that she spent 44 days total in the hospital over the course of 2021 (and had major surgery) - I am beyond proud. #IBD

Double trouble with #IBD. With these two on different infusion intervals, they overlap infrequently!

I am having the darnedest time getting medical records transferred. On one phone call I learned that the records are “with the copy service”. I guess I don’t know much about transferring records…but they are electronic…what is a copy service doing?

A possible sign you have an #IBD kid: My 7yr old refused a snack from someone by saying, “No thank you, that has maltodextrin in it.”

Just met a family at their son’s first med infusion for #IBD. Watching the apprehension on the mom’s face made me feel a bit emotional - I know the feeling all too well. Hoping for a cure, or better treatment options, for kids with #IBD.

When your #IBD kid feels ready to do her own medical paperwork…

I worry a lot about my girls’ mental health, especially given their #IBD challenges. One found this chart to fill out this year for fun (their words). I love it, because get a peek of their feelings over time - without having to poke a teen too much!

“Draw a picture to help you solve the problem.” Not sure this was what her math teacher had in mind! 😂 (Not an #IBD post - just made me smile)

Just two sisters with #IBD at a track meet together! So proud of them!

We’ve had a weird #IBD week. My middle started to have nausea, stomach pain, and complete lack of appetite. This was a case of it looked (mostly) like a duck, quacked like a duck….but wasn’t a duck! Not her IBD we think, but constipation. Not what I was expecting, for sure.

I had a wonderful day Cleveland Clinic for the Kaplan Pediatric IBD Symposium with this former Pittsburgh resident. Several great talks, including Sandra Kim MD on the power of the “omics” in clinical IBD care.

This was an exciting find for our house. My girls LOVE Lego. Finding a set with a figurine that has an ostomy really made our day. #IBD

My daughter is away from home visiting her cousins. This may not seem like a big deal - but for our #IBD kid - it is! She is doing her own ostomy bag change. She is managing her diet. My sister is doing her med injection. She has come so far in 3 years since her surgery! ❤️

Infusion time = serious crafting time! #IBD