Last month, Tiara’s neurologist prescribed her a new seizure medication that just came on the market, called Potiga. Even though Tiara is only having a few seizures each day, which is super fabulous for her, she is so sedated she can’t do much until the afternoon each day. Our plan was to add this medication and if it appeared to work, we could take away one of her more sedating seizure meds such as the clorazepate. I was a little nervous to add a 6th seizure medication on to her regimen, plus I don’t ususally mess with her meds if she is have only a few seizures each day but I decided to get the prescription filled anyways.
Of course, the insurance caused a big fuss about the new super expensive drug and it eventually took 5 weeks until they would give it to her. I will admit I wasn’t stalking anyone to get the prescription filled because I was still on the fence about giving it to her. I picked it up from the pharmacy on Saturday and couldn’t bring myself to give it to her until Sunday night. I was supposed to give her a half of pill at the night the first week and increase by a half a pill each week until she was taking one pill each morning and night. This is a typical titration schedule. Once she reached her goal we could then start backing down on another medication. Because I always try to listen to my intuition I decided to make my own schedule that differed from the doctors. Monday night I gave her half a pill but also took away half a clorazepate, it felt like the right thing to do. You may think I am crazy, but I have learned when I listen to the doctor and not my intuition it always goes wrong for Tiara.
Monday morning she woke up and seemed fine except her diaper was dry. She never wakes up with a dry diaper and if she does it is soaking within 5 minutes of being awake. I kept waiting for the flood and it wasn’t until 2pm on Monday that she finally urinated. So weird. Ohhh, and then I remembered what her neurologist had told me. She mentioned that some child experienced the side effect of holding their urine while on Potiga. What does that mean? Can they not urinate, or is just painful so they hold it in? Apparently they can go to the bathroom but it is painful so they avoid going. Oh fun!
I decided to give her the dose again on Monday night just to confirm that this was a side effect and not just a fluke. Sure enough Tuesday morning went the same as Monday and I didn’t need to change her night time diaper until well after lunch. I told Lou what was going on and asked if he agreed with me that I should stop the medication? He looked horrified and said “of course you should stop it.” “Ok, that is what I thought I just wanted to confirm it with you.” I had emailed her doctor but received an automated response that she was out of the office and would only be checking email sporadically, so once again I knew I had to figure this out on my own. I just kept imaging if one little half a pill caused this to happen so quickly what would happen if she took the full dose? Kidney infections, toxicity, who knows?
Anyway, I didn’t give her the dose last night and this morning she woke up with a super wet diaper. Yeah!!! I was so happy to see that big soggy astronaut diaper. Funny how you can be grateful for something as gross as a dirty diaper.
Happy Thursday!!!
p.s. Any TSC family reading this that needs some Potiga let me know because the copay was $60, and I hate to waste another bottle of valuable medication. Yes, I know this is probably illegal, but TSC families share meds all the time, if need be. 
