Once again I am having heart failure over the national drug shortage of Caroline's medication. Last week I called to get her next shipment and it was scheduled to be delivered tomorrow. Today I got a call from the mail order pharmacy (Curascript - the specialty division of Express Scripts) alerting me that the medication - DDAVP 10mL vials - is on back order until May 31. It had been scheduled to arrive in their warehouse on April 27 but was just pushed back.
I inquired about the rhinal tube as that was our back up plan and was told that they do not carry that in their inventory at all. (Our local pharmacies also do not have either product available.)
We see our pedi endo next week and were supposed to put together a new medication plan at that time but what do we do if both forms of DDAVP are unavailable? Currently the rhinal tube isn't even listed on the FDA drug shortage list - which means no one even knows the problem exists!
There is a nose spray and a pill form but babies cannot take either. If we could break open the nose spray bottle we could make that work by giving it to her under her tongue - but I am not sure how feasible that is. A mom I have befriend online is going to try it out and let me know before the appointment.
And to top off the craziness, DDAVP nose spray is now being sold online as a memory enhancing drug! Why any healthy person would risk seizures (from hyponatremia) to improve their memory is beyond me... it seems very unsafe.
To report a drug shortage to the FDA you can email drugshortages@fda.hhs.gov. You can also ask your pharmacist to report drugs on back order to the ASHP (prof. organization for pharmacists).
I wish I could end with some sort of call to action but I can't. I have no idea how to fix this problem...
I inquired about the rhinal tube as that was our back up plan and was told that they do not carry that in their inventory at all. (Our local pharmacies also do not have either product available.)
We see our pedi endo next week and were supposed to put together a new medication plan at that time but what do we do if both forms of DDAVP are unavailable? Currently the rhinal tube isn't even listed on the FDA drug shortage list - which means no one even knows the problem exists!
There is a nose spray and a pill form but babies cannot take either. If we could break open the nose spray bottle we could make that work by giving it to her under her tongue - but I am not sure how feasible that is. A mom I have befriend online is going to try it out and let me know before the appointment.
And to top off the craziness, DDAVP nose spray is now being sold online as a memory enhancing drug! Why any healthy person would risk seizures (from hyponatremia) to improve their memory is beyond me... it seems very unsafe.
To report a drug shortage to the FDA you can email drugshortages@fda.hhs.gov. You can also ask your pharmacist to report drugs on back order to the ASHP (prof. organization for pharmacists).
I wish I could end with some sort of call to action but I can't. I have no idea how to fix this problem...
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| Too bad neither of them can help me with the laundry! |
Oh no! There is no way to somehow grind up the pills?
ReplyDeleteI wish Sara... the pills are too strong and if you break them up you don't get an accurate dose. :(
ReplyDeleteWhen will you run out of your supply? I'm sure you've tried the hospitals?I'm speechless at the thought that the pharmaceutical companies can run out of this medication. I;m sure they never run out of botox. Ridiculous. And heartbreaking for the families who rely on it.
ReplyDeleteWe have 2 months right now. North Country Hospital has one vial in stock in case we need it... Last time we tried Dartmouth, NC, and Boston Children's with no luck. And you are right, they won't run out of injectables like Botox because they make too much money off of them. :(
ReplyDeleteHope you are able to solve getting the prescriptions you need for Caroline, Aimee. I feel your frustration!
ReplyDeleteBoo! I hate this story, it makes me scared and sad and angry. Stay strong Aimee, you'll find a solution, I know you will!
ReplyDeleteOh, Aimee!! That is awful!! I'm so sorry you are going through this... I would be going crazy with frustration and fear. I hope your doctor is able to develop a new plan for her medication at your appointment!! Keep us posted!
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