Stopping One to Start Another

Yesterday afternoon we saw Bug's pediatric neurologist, Dr. Coleman, for a regular follow-up visit. We're all trying to figure out why Rayleigh Bug continues to have 3-5 seizures a week.


We still have about 3 weeks before we will see the full results from the increase of Clobazam that Dr. Hernandez has prescribed.
Dr. Coleman agrees with my husband and I that the Phenobarbital really contributing anymore to her seizure control so we're starting to wean her completely off of it. She is on 9ml each night right now and we will take it down 1ml a week until its gone. Dr. Coleman advised that her seizures could get slightly longer as we get her off the Phenobarb so let him know if they do and we might start weaning more quickly so she can start Trileptol.

That's the other big thing we discussed this meeting. Trileptol is used to control Partial Onset Seizures which is when the seizure activity begins or happens in one part of the brain. When Rayleigh had her 3-day EEG down at Cook Children's Hospital they concluded that Rayleigh's seizures begin in one lobe of her brain and spread after a few seconds to the whole brain. We haven't tried Trileptol earlier because the side effects are higher in infancy. So it's nice to know that there is still a medication out there that we haven't tried that might control the seizures fully. She continues to have 3-5 a week about 20 minutes into her nap.

If the Trileptol doesn't work after we get her on an appropriate dose we will begin the Ketogenic Diet at Cook Children's Hospital.

We see Dr. Coleman late in April so we will know by then if Clobazam is going to get them under control again by then. She will also be just about done with Phenobarb, I think we did the math and she will still have 2ml a night then. Coleman will go ahead and write the Trileptol prescription at the appt if the ClobazamPhenobarb down.

PS: Rayleigh Bug will be 1 year old 2 weeks from today!!!

Rayleigh's Birthday is Getting Close

For those of you who have been asking for gift ideas for Rayleigh's 1st Birthday, I have created an Amazon Wish List. Amazon lets you add items from any online store (Target, Baby Gap, Amazon, etc) so it makes it easy to add all the different things that Rayleigh likes!

You can view the Wish List at http://amzn.com/w/2RBBAJ8JNFPWU

If the link doesn't pull it up you can locate the wish list by going to WWW.AMAZON.COM and clicking the Wish List button and search for "Rayleigh". Her picture and wish list will appear to select.

Happy Shopping!!

Can't wait for her party, it will be a great celebration and huge milestone in all of our lives!

Clobazam Dose Change

Rayleigh is continuing to have 3-5 seizures a week. Each is still under a minute long. We see Dr. Coleman, her pediatric neurologist, on Friday to ask a few questions, get her weighed and have her physical.

We talked to Dr. Hernandez, her pediatric epileptologist from Cook Children's Hospital, about checking her Clobazam levels. He said that based on her current weight of 19 lbs we can go ahead and raise her dose to 1 full pill twice a day. Dose changes take a long time to take effect on her body so we need to allow 4 weeks. If she is still having seizures in 4 weeks we call back and he will have a blood test ordered through the local DLO lab to check her Clobazam levels to see if we have room to up the dose.

If there is not room to increase we may need to wean her off the Clobazam or try it in combination with a different medicine.

We will ask Dr. Coleman about Topomax (an anti-convulsant medication) and explore more about the Ketogenic Diet. Hopefully we find a medicine/dose that will get the seizures under control fully so we can avoid the Ketogenic Diet altogether. But if that diet works, we can't say no!