Ashley had her first follow up EEG and the results are very promising. They tried to induce a seizure and were unable to, this is great news and is a clear indication of the medication having a positive result.

She continues to gain weight. She now weighs 95 lbs up from 70 lbs at diagnosis.

We got some bad news today. Due to changes in international drug import regulations, Rare Disease Therapeutics, the company in Tennessee that has been providing the medication for Dr. Salen’s study is no longer able to provide the medication to us for the study. This will bring a close to the study and is another roadblock in getting fda approval for CDCA as a treatment for CTX.

We are now to begin getting the medication directly from Internationale Ludwigs-Apotheke, the pharmacy in Germany that distributes CDCA to the United States. Thankfully we don’t have to travel to do this, we only need to send the prescription to the pharmacy and the credit card info to order the medication. This is a small bump in the road, maybe it’s time to learn German 🙂

Ashley continues to gain weight and is looking better than she ever has.

We noticed that Ashley is putting on weight, to us this is a good sign, in retrospective, she was thinner than she should have been, she is now getting much of the nutrients that she was previously lacking. This is a positive sign.

Ashley had cataract surgery and is seeing better than she has in a long time, she makes comments as to how clear her vision is. We are very happy with the results. Dr. Bock is the man.

Ashley begins CDCA(Chenodeoxycholic Acid) therapy. We are anxious to see the results.