The weight is heavy today

The weight of Addyson’s illness is winning today. I’m struggling.
She gets one of her meds from a dr in GA. (No issue there)
Except that it expired yesterday, so the school can no longer give it to her and she can’t make it through a day without it.
We found out that MD pharmacies have a law in place that they can only refill meds from States that border MD (like the borders of their state, have to touch MDs borders). So we can’t get this med compounded here in MD.
I tried PA, they don’t have that law, but aren’t licensed in GA, so they were no help.
I tried VA, they are charging 4x what we paid for the Med in GA, but right now might be our only option.
Or we drive to GA this weekend and get the refills.

Addyson’s in tears that she can’t get through school without the med, I told her she doesn’t have too…. we will figure it out. 
But honestly, Why can’t it just be simple. WHY WHY WHY do things have to be so difficult? 

Life with a rare disease. that’s all I can say today as I shake my head and crumble in the worry of the weight of getting my kids a med she needs. ———————————————————–
Then we have some push on the fact that this med is not FDA Approved. We are aware of that….we are aware that it’s in trial stage, and that some have to weigh the pros/cons to trial a med before approval is given. This is not the 1st non FDA approved med Addyson has taken. We do not take these meds lightly. we weigh our options. We look at the risk. But honestly sometimes when your fighting these rare diseases, not all meds will be approved. This particular med is almost through FDA approval and we can’t wait for the DR to receive the approval, as he’s been working on this for years.


Addyson was given a non FDA approved med from a major institute as well. And this med has proved to work. It has stopped Addyson’s fever syndrome in its tracks. It has stopped her from having 105 fevers every month. It has allowed our daughter to not have febrile seizures monthly. It’s given her a life, she wouldn’t have had without this med. And guess what, it now has FDA approval!!!!

FDA process: https://www.nichd.nih.gov/health/topics/pharma/conditioninfo/approval

Addysons on colchicine
Lots of times the meds we are given are being given for off label use.

#LifeWith Addyson
#ChronicallyIll

#RareDiseaseWarrior

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