Plan C

Gracie once again awoke in a great mood and was a busy girl this morning. She was very tired through the day (effects of the Vigabatrin) and took a number of naps. We saw fewer spasms today, under 20.

I talked with Gracie's pediatric neurologist today as we needed to come up with Plan C as the Vigabatrin is not working. With Infantile Spasms, you don't have the luxury of waiting long to see what happens, you need to try something and if it doesn't work, move fairly quickly to the next plan. Our goal is to stop the spasms before brain damage occurs.

Plan C is prednisone. Gracie will get fairly high doses of prednisone twice a day for a week. If the spasms continue, on week two she will get even higher doses three times a day. We will lower her dose of Vigabatrin, but will not discontinue it. We do get to discontinue her ACTH injections immediately as both ACTH and prednisone are steroids, so the endocrinologist has indicated that the prednisone will more than make up for the ACTH. We will continue monitoring Gracie's weight, blood pressure, and blood labs. She must continue taking the Zantac three times a day and the antibiotic (Bactrim) twice a day on Mondays, Wednesdays, and Fridays. She will also continue taking Topamax twice daily to manage her epilepsy.

We hope and pray that Plan C will work. We have Plan D waiting in the wings -- that would be to put her on the ketogenic diet. This would require a week stay in the hospital to get her started and a two year commitment to the diet. The diet is very strict and is 75% fat and 25% protein and carbs. I don't look forward to having to measure and weigh everything that goes in Gracie's mouth, but needless to say if that is the answer, we'll do it.

We tried out Gracie's new helmet today. She doesn't love it, but tolerates it. I think it gives her a little more confidence so she is a little braver and although I still follow her around, I don't feel like I have to be catching her at the sign of her losing balance, so she is actually learning to catch herself more often. The apron strings just got a little looser.

Gracie and mommy had a battle of wills today. Gracie is attracted to electrical outlets, we have replaced all of them in our house so that she can't be harmed by touching them, but I still want her to know they are not to be touched. Today she kept going for the one in her bedroom and would laugh when I would tell her "no, no" and remove her hand. Finally I just removed her from the area. This happened a second time, same thing, but I took her away from it and moved her to the middle of her bedroom. She was not happy about this and she immediately crawled out of her room into the living room and pulled herself up on the gate that is across our stairs that goes to the front door. She stood there and shook it as if to say, "I want to escape." She is a sweet girl with a strong will and strong streak of independence.

Please keep the prayers coming -- we would like to see success with the prednisone.

Love,
Lisa, Jeff, and Gracie