Although my optimism is increasing that we really may be on to the root cause, I’m still a realist and accept that it may not be the reasons for Sarah’s seizures. However, my hope increases day by day. Today is two months since her last event, or 60 days. This is very exciting to report! The doctors do not want to discuss the prospect of reducing her Keppra dosage. I get it. Why ruin a good thing at this point. Hopefully when we get to 3 …
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The good news is my entries are getting less and less. Today we are 54 days clear! There really hasn’t been much to update. Sarah has been in a great mood these past few weeks and I think part of it is because she is interested in a new boy whose name is Ashton. I’m sure the other part is she is feeling confident that we may have solved her issue. Still, my problem with this is it because we are on the Keppra …
Dr. Nicole suggested cutting out the B-Complex completely since her B6 was so high. I suggested we just stop the evening dose basically cutting the B-Complex in half. Excerpt of the email exchange Go ahead and decrease to 1 in the morning. Her levels should reduce by cutting the dose in half. —- On Tue, 28 Sep 2021 02:27:04 PM -0700 <Sarah> wrote — Hi Dr. Nicole, ok, should we completely stop the B-Complex? She was taking one in AM and …
Yesterday was a big day for a couple reasons. Yesterday was Ricky’s 16th birthday and it was day 30 that Sarah has been clear! She is also pooping more regularly now. To me this is a big deal. Regular pooping is an indication of an improving digestive system. Sarah has been in a real good mood these past few weeks and I think it’s because she also knows the number of days she has been clear as well. We still have not gotten …
Today is a Sunday. Coffee and continued research. Today’s focus is to assume the glutamate is still building up and what can be done to reduce/release excess. The good news is the research continues to point to many nutrients we should all be getting in our diets. Unless there is some underlying problem prohibiting absorption like candida overgrowth caused by heavy antibiotic use! I really am becoming ever so certain this is Sarah’s root cause. Only time will tell. Without proper absorption, many problems can occur …
Today I’m still very excited about the last couple days of discovering and confirmation from a licensed Dr. Camile. I’m also very anxious because we are getting in that range of 15-20 days in between events. It feels like glutamate accumulates in the body and if it is not being converted into GABA via the GAD enzyme is when it causes a problem over a given timeframe. And maybe it takes Sarah 15-20 days for Sarah to get so much glutamate in …
Today I sent Dr. Nicole and email: —- On Thu, 09 Sep 2021 07:10:02 AM -0700 <Sarah Pansegrau > wrote — Hi Dr. Nicole, A little update on Sarah. We had out 1st appointment at Stanford Children Center August 24th. Sarah had her 3rd Grand-Man on August 23rd. But as I write this today we have not had a fourth. But anxiety for parents getting high because it was 15 and 19 days in between the first two events and …
We are driving back to Stanford to get her head gear removed. She was crabby both days with that on her head. This time instead of me getting frustrated trying to have any semblance of a conversation, I decided to simply do all the talking. I talked about how I got to where I am today in life starting all the way back to kindergarten. This included successes and failures. She seemed to really enjoy just listening and hopefully there were some tidbits of …
Today is a Friday and Maelani is skipping school to head to Disney in southern California. Well, Maelani is our security blanket while Sarah is at school as the is in many of her classes and with her most of the day. For the other classes, we have put plans in place if Sarah needs any help With her early warning system, we have about 10-15 minutes before a potential event. At a minimum get her to the ground safely while trying to …
We were all up early and exhausted. I did not sleep. Got to our appointment for our first EEG at about 8:30. Our appointment with the actual doctor wasn’t until 1:30 so we spent time shopping at Stanford Mall and found a place for breakfast. Because of Covid, only one parent could accompany Sarah and it made sense that it was me. We met the doc and he spent about 30 minutes with us listening to the history of these events. He said …
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