Treatment

It's hard to believe we are approaching the three week mark since we met Dr Ashley and got the answers we had been looking for.

That same day Nolan was given a large dose of IV steroids (Solumedrol) and IV Rocephin (antibiotic). He was a trooper, as always, and didn't even flinch for the IV insertion. The steroid infusion left a very bad taste in his mouth (literally) and was hard to get through. He was gagging and just generally not a happy camper. Many peppermints, an IV antibiotic, and an hour later we were on the way back to Tallahassee. 

For continued treatment at home, he put him on oral prednisone, oral clindamycin, and oral acyclovir and some special probiotics. He told us to check back in within a week to let us know if we saw any improvement. The following Thursday, I let him know we had not seen any. Dr Ashley kept him on the acyclovir and prednisone and changed the antibiotic to Azithromycin. After 5 days on that we noticed what we felt like might be the tiniest bit of improvement, but he felt like that wasn’t really adequate, so again, we kept taking the antiviral and  steroid and moved on to Keflex. We finished the two week course of steroids and antivirals last Saturday. Yesterday was check in day with Dr Ashley and sadly we had to report no improvement again. Unfortunately, penicillins are not an option to try due to Nolan being allergic. Tonight, Nolan will begin doxycycline as one last oral antibiotic Hail Mary, while we wait for the steroids to leave his system. After 14 days off the prednisone, Dr Ashley will run some labs, which may or may not prove helpful in painting a picture of what’s next for treatment. He said if the treatments we tried have not worked then we are likely dealing with  Lyme and or co infections also. He recommended when we do labs we also do a specialized kit that tests for those. Based on those results, then we can look into whether mold may be an issue. IVIG infusions would be the next option but they are VERY costly and insurance will not always cover. Dr Ashley does not file with insurance either, so it would come down to paying out of pocket for him to treat (which would be about $18,000 per infusion) or try to find a doctor willing to complete a prior authorization with Aetna and pray they cover - with a hefty copay. There is no guarantee that the IVIG would work with just one infusion either. Some kids require one and I have seen some report needing ongoing maintenance with it. The lyme testing is also expensive and an out of pocket cost, but is a dream compared to the cost of IVIG. 

Below I will post a little education for anyone interested (the science nerd in me can’t help myself).

If you are the praying kind, please pray for Nolan. Pray that the doxycycline is what he needs and he will show improvement. Pray for wisdom for Steve and I as we make decisions and try to hold onto hope for our sweet boy.

Several have asked me about a clearer picture of Nolan’s symptoms; I will try to post about that this weekend.