Jordan's diagnoses, Medication, PT schedule & appointments/referrals

March 18th 2009 after an MRI & EEG, Jordan was diagnosed with Myoclonic Seizures, a form of Epilepsy. She has been on different medication but her seizures are still not yet controlled. Her type of seizures, she may grow. October 2009 we started hearing that she might have Ataxia, but thought it was due to the seizures or medications. Which still MIGHT be the case. Yesterday we were told she might have Ataxia Telangiectasia. The only true way to know for sure is genetic testing for Jordan, Nick & myself. Me & Nick would have to both be carriers of a gene to have passed this on to Jordan. We did blood work yesterday to check her AFP levels which were 11.1 and normal ranges are less then 8.1 and her IGA Immunoglobulin A levels which was 30 and normal rages are 24-192. Both tests were also ran a year ago and her AFP was normal & now isn't, and her IGA was more mid range. They are running other tests too but these are the ones I can remember.

Last night Jordan started Keppra http://www.rxlist.com/keppra-drug.htm. She is taking 1.5ml twice a day. This is while we decrease her Depakote Sprinkles http://www.drugs.com/mtm/depakote-sprinkles.html. Each Depakote Sprinkle is 125mg at her max Jordan took 8 a day. Today we are at 5 a day & will drop one more off each week until she is off Depakote. She will continue to take Clonazepam http://en.wikipedia.org/wiki/Clonazepam .25mg daily and Zonisamide http://en.wikipedia.org/wiki/Zonisamide 200mg even days & 100mg odd days (very other day 200, then 100, then 200...) She is also on Carnitor http://www.rxlist.com/carnitor-drug.htm .5 ml twice a day. They first tried her on Lamictal http://www.rxlist.com/lamictal-drug.htm Jordan was allergic to it and we ended up at the ER with a rash.

We will keep you posted on Jordan results to these meds.

Jordan started Horse Therapy through Santa Ynez Valley Equestrian Center off Refugio Road this past week. She will continue with them once a week. She also has PT & OT twice a week with Heather & Fran through CCS (California Children Services). Plus PT & OT once a week through Early Start.

Jordan's PCP (Primary Care Physician) Pediatrician Dr. Brennan has approved for us to start going to see a Pediatric Epileptologist (Pediatric Neurologist who specializes in Epilepsy) down at UCLA. We have also confirmed that if CCS approves the referral they will cover the cost. It might still take 3 months for an appointment but I will work on speeding that one up.

This is an open blog & facebook page. If any of our information, situation, resources can help, comfort or encourage anyone else then PRAISE THE LORD.

PRAYER: God created Jordan, He loves her even more then we do, she is His child, and His child before she was ours. We are trusting in faith that the LORD does heal, He is the ultimate Physician.