I know I haven't updated in a while, but we've been stuck on this dose for the last month. Claire has had a few reactions, one severe. The thought of increasing her any sooner was out of the question. It's honestly a little frustrating (we are almost to a peanut) but her little body is just taking a little longer to acclimate to the changes. We will continue to be patient, God is good.
Since we have been on the same dose for 4 weeks and were only sent home with 2 weeks worth of capsules, we had to have more shipped to us. The compound pharmacy is in Frisco (no they will not do it at any of our local pharmacies). The thought of driving 3 hours one way to pick up meds was not something I wanted to do. Thankfully JaNae Wilson Carroll lives right there! She was sweet enough to pickup the capsules and overnight them to me. This sounds small, but it was truly HUGE. She has 2 small children, and was willing to load them up to help me out. So grateful!!!!
The package arrives early the next day - so happy to just have them appear on my doorstep. I put them in my purse and we go to dinner at a seafood restaurant (because we can now!!!!! no more shellfish allergy!!!). Afterwards Claire wants to stop at Nana's to have her hair trimmed a little shorter. We stop and while Claire is getting her hair cut I decide to get her dose ready. Keep in mind, this is the new shipment and I have not opened one yet. I get her Hershey bar (don't judge) and open the capsule to poor it on there. It's white, like white white. It has always been peanut color. Through the whole capsule process it has been the same color. We all taste it and it's salt. All you taste is grainy salt. To say that I'm unhappy is an understatement. I immediately call Dr Silvers and explain the situation. He is more upset than I am believe it or not. He has us go to Kroger to get PB2 (it's a powder peanut butter) to use as her dose until he can straighten it out. Thankfully there was something to do, I was worried we were going to have a real setback.
I speak to the pharmacy Monday morning and she wants to know how I know the capsules aren't right. "Because they taste like salt and are bleached white, what do you mean how do I know?" She asks if I want her to make a new batch or just send more from the same batch. Are you kidding me, Why oh why would you send me MORE of the wrong thing. I feel like I'm going crazy at this point. I "kindly" ask her to make a new batch and ship them to Dr Silvers. She does and he calls the next day confirming that these were NOT correct. Yay - I'm not stupid after all!!! And I didn't overreact!!! Small victory.
Several days later he calls back to say there actually is peanut flour in the capsules. It's a different bleached formula that the pharmacy used this time. The physicians were not aware of the change and were not at all happy about it. If something that huge is going to change, they should be alerted to it. This is truly life and death they are dealing with here. It matters. Needless to say I asked Dr Silvers if we could stay on the PB2 until our next increase, I still don't trust the other capsules. So, here we sit at 250 mg (1/8 tsp). We leave in the morning to increase to our last capsule (500mg), next stop....single peanut twice a day.
I don't think I'm ready for that. The peanut is a big deal. Everything else has been "medicine," but now it's for real deal peanut. Craziness. She is super excited about all the things she will be able to do; airplane, amusement parks, sleep overs, etc. I'm the one (Adam too) who is nervous and somewhat anxious about what is to come. God has brought us farther than I thought possible.....we are almost there! We just have to continue to trust.
Thank you again for all the prayers!
