We chose to go to a pediatric neurologist at the University of Michigan.  It was a very scary thing for me…I wasn’t sure what would happen and how I would react (I was a very protective mama bear). My horsey friend came along with me for the support.  We spent the day at the hospital, having an EEG before seeing the physician.

For the EEG, Caroline was a trooper.  The tech put her on an adult stretcher with a bump to hold her up.  She had all the leads placed and wrapped her head with gauze.  She laid on the stretcher, sucking her passy, with her eyes closed.  She looked like she was sleeping.  She wasn’t.  She was seizing and we didn’t even know.

The EEG was diagnostic and did show the specific spikes in her brain waves to diagnose Infantile Spasms (IS). We met with the pediatric neurologist, who was great.  He was very understanding of our wishes to keep our sweet Caroline comfortable and not do a bunch of labs and tests.  He was willing to treat her without all of the testing that is usually done, however, he was unsure if we would be able to use the best medications without certain tests and certain consults because of the toxicity of the medications.

I left the hospital with a lot to talk over with my husband.  I didn’t make decisions that day because none of the decisions were benign.  We had the option to use a medication for IS that was just approved in the US despite its availability (had been used in other countries) because of the severe side effects–like blindness (Sabril). I initially thought that we should use the medication but my husband was against it, and once I understood why, I was as well.  He didn’t want her to go blind.  That was the one thing that she seemed to be able to do with purpose–look at us.  He wasn’t willing to give that up, and once discussing it and realizing that was a possibility, I wasn’t either.

Another option was to continue to increase her current medications, but the doc said that it probably wouldn’t work.

Another option was to start a different medication, Topamax, continue her phenobarbital, and add clonazepam as needed for frequent seizures. That was the choice we made.

Once we added the topamax, the frequency of her seizures improved.  But the topamax was a pain in the ass.  It was not manufactured for infant doses so her medication had to be compounded and refrigerated.  There aren’t compounding pharmacies on every corner either.  My choices were a pharmacy in an unsafe area in Flint, 30 min from our house or 45 min from my job, or a family owned neighborhood pharmacy, which was also out of the way.

My husband got the first bottle from the Flint pharmacy.  He called, they said it was ready, but it wasn’t in the facility when he got there. So while these people were figuring this out, Steve was sitting in the waiting area with druggies and bums and my seizing baby.

He left there after waiting for 45 min and not getting the medication.  He was pissed and he was stressed.

So we switched pharmacies (the medication was called into the Flint pharmacy originally which is why we went there first). And after I had been in there a few times, they offered to mail me the medication in an insulated bag 🙂 This may have been a small inconvenience for the pharmacy, but it made a big difference for me, and I was grateful.

Flash forward to June 2013….

I was working as a hospitalist, the minimum number of shifts that I needed to fulfill my contract.  I was very private about my home life except with my partners and a few choice people. I didn’t want to make people uncomfortable and I didn’t want people to think differently of me.  Anyway, I had been working closely with a clinical pharmacist rounding together on the more complicated and sicker patients.  My last week working, I finally opened up to her about Caroline.  She asked about the meds, and I was stressed because I needed to find another compounding pharmacy, peds neurologist, everything.  She said, well I can at least fix one of those problems.  She said that topamax was easy to compound.  She told me what products I needed for suspension etc. She told me the types of bottles and syringes.  And she wrote out instructions on how to compound the medication myself…All I needed was a mortar and pestle.  Wow.  That was more helpful than she will ever know, I’m sure.  Thank you Bridget.