Appointment with Anel

Yesterday we had our first appointment with Bobath physio Anel. Last week after seeing Dr. Zivny we altered the seizure medication Sierra is currently on and have allowed any changes from doing this to occur (7 days). We agreed to start Sierra on the new epilepsy medication as of yesterday evening so that Anel can obseve her this week, along with us, and see if there are any changes in the level of seizure activity. We are only on half dose because you have to ease in to the drug but anyway fingers crossed...

Appointment with Tereza

We saw the Vojta physio Tereza on Thursday after she attended and helped translate the eye appointment with Dr. Zobanova on Wednesday. It is always better to have Tereza with us at appointments where possible because she is able to give a deeper cut to whatever the Prague doctor has been able to communicate. Both our doctors have amazing English but Tereza will say it again and somehow it helps with extra detail.

Tereza is very concerned about Sierra's seizures. She has always worried that they were brought on by the stem cell therapy that Sierra had. Dr. Zobanova assured her this is not the kind of seizure activity you would see from an after effect of stem cell. Although she is an eye doctor and not a neurologist, this is what is so SO amazing about the doctors in Czech Republic, they are not narrow in their knowledge. Dr. Z has made it her business to stay informed about stem cell and knows a lot about seizures because both can affect vision.

Tereza took it upon herself to call a couple of other well known neurologists she has worked with to ask about the new drug we have been recommended. She heard from them that it is a good drug and there is probably a 50% chance of it being effective.

Appointment with Dr. Zobanova

We saw Dr. Zobanova on Wednesday after seeing Dr. Zivny on Monday. Unfortunately she said that Sierra's vision has regressed. She had previously gone from zero ability to focus to normal vision through training the muscles in her eyes with contact lenses and due to seizures she is unable to focus (within short distance) again.

As long as we are able to get the seizures under control Sierra should learn to focus again but this was obviously a disappointment.

We have begun using the contact lenses again...

Appointment with Dr. Zivny

We had the appointment with Dr. Zivny today. He has given a diagnosis of a type of epilepsy that Sierra is developing and has recommended a new drug that is available in Europe that he thinks will control these new seizures.

He says the drug is not available in America and Australia because it always takes 10-15 years for epilepsy treatment to reach these countries.

I am so SO thankful we came. However, Sierra is currently not in very good condition because she has had at least 8 weeks of heavy seizures and we have been treating this with Valium. Sierra is weak and it will take time for her to recover.

Thank you to everyone who is helping us raise money for this trip. We are not there yet but we are very, very thankful for the support.