Clobazam

Friday, November 12, we woke up at home after a much-needed restful night's sleep. But the work was not over. Michael and I had forms to fill out and fax and people to call in order to get Rayleigh's Clobazam prescription filled out.

Clobazam is an anti-convulsant, seizure control medicine that is not approved in the USA. Because it is not approved here yet we are using Mark's Marine Pharmacy in Canada to receive the medicine. We have to pay every bit out of pocket because insurance doesn't cover any prescriptions for non-FDA approved medicines.

We had to get a written prescription from Dr. Hernandez (epileptologist at Cook's) along with a letter explaining why she needs the medicine signed by Dr. Hernandez. Both of these need to be faxed to Mark's Marine Pharmacy along with a form filled out by us and a letter signed by us stating that Dr. Hernandez has prescribed Clobazam as seizure control for Rayleigh.

After we fax all the information we have to call them and give them payment information. We chose to only order 1 month's supply this time. You can order up to 3 at a time to save on shipping costs. But, with us not knowing if it will work we decided to do one month first so if it doesn't work out we didn't waste extra money.

Each month's supply of Clobazam is $18.99 and shipping is $15.70 for 1-3 boxes/months supply. Money well spent if it controls the seizures.

Clobazam is a pill tablet that is intended to be swallowed whole for adults. For infants and small children you must crush the pill. It can be taken with or without food or water. 

Dr. Hernandez prescribed a weaning process onto the pill for higher tolerance. Her full dose prescription is 1 pill a day, given 1/2 pill twice a day. She is still to take 12ml Phenobarbital at night. The weaning for Clobazam goes as the following:

Week 1: 1/4 tablet at bedtime
Week 2: 1/2 tablet at bedtime
Week 2: 1/4 tablet in morning, 1/2 tablet at bedtime
Week 4+: 1/2 tablet in morning, 1/2 tablet at bedtime

We had to try several different methods of giving Bug her Clobazam before we figured out the best way she liked. This pill taste like the driest, most bitter aspirin ever :(

First, with just a 1/4 of the tablet we would crush it and put it on a spoonful of applesauce or rice cereal. That worked for the first 3 days then she starting catching on and spitting it out.

Next we tried to crush it super fine and mix it with Pedialyte. She took this fine the first night we tried but then spit it out completely the next night. We also tried formula one night but she wasn't having any of that either.

Once we were on the 1/2 tablet dose I tried to just crush it up and rub it dry onto her tongue and let her drink formula to wash it down. This kind of worked, she hated the process but at least she was getting all of it down this way.

Lastly, as suggested by Michael's grandmother, we crushed up the 1/2 tablet of Clobazam and mixed in a little bit of sugar and just rubbed it dry onto her tongue (or let her suck it off my finger if she liked the sugary taste) and then wash it down with a little squirt or 2 of Pedialyte or sugared water. She continues to take it this way now and seems to enjoy it best.

The good news with this Clobazam is that she has gone from 1-2 seizures each day to 1 seizure every 3-4 days! We have already ordered 2 more months worth. We really hope that this is the solution and that it's not just another "honeymoon phase" like when Phenobarb gave us 16 days seizure-free in a row.

We have to give the Clobazam another week before we see full results. Let's hope the seizures continue to dwindle away!