I'm going to attempt to relay all of this information the best way I can. When you have three medical conditions and 4 different doctors things get complicated and hard to explain but I'll do my best.
We just got back from Houston for follow up visits with Braydon's oncologist and neurologist. Everything went well. Braydon's lab work and physicals went great. One doctor commented that outside of the seizures now, Braydon is "healthy as a horse"! We did do an EEG to see what the current seizure activity looks like and it looked "about the same" as the last one, which was done three months ago. However Braydon is having less seizures than he was three months ago. He is now down to one seizure a day. This is so great considering there was a time that he was having 6-10 a day. Although we are so thankful for less seizures, our goal is ultimately NO seizures!
We have been unsuccessful this far and finding the treatment that will cease all seizure activity. We have tried 3 medications so far....Keppra, Tripletal and Depakote. We have seen the most results since starting the Depakote but we knew he was on a pretty high dose and we were still seeing at least one seizure a day.
On a recent visit to Braydon's homeopathic doctor we discovered through lab work that his medication level for the Depakote was too high. It should never be over 100 and it was 136. We reduced the dosage and checked the level again in four weeks. That time the level was even higher....147. So I spoke with Braydon's doctors at MD Anderson and we decided that since the medication is only helping somewhat and not completely alleviating the seizures, we should start weening him off the medicine completely. This took a full week to do. He is now taking NO SEIZURE MEDS. The best part is...the seizures did NOT increase when we stopped the medicine. He is still only having one seizure a day even without meds. THIS IS A MAJOR PRAISE!!! This means that the decrease in seizures was not due to the Depakote but another miracle!
We are seeing an epileptologist the 2nd week of December and will be admitted into Hermann Hospital in Houston for 5 days for Braydon to undergo an epilepsy study. This will hopefully give the doctors more insight as to why there have been so many inconsistencies and rarities on Braydon's EEG reports and hopefully aid in finding the right "treatment" for the seizures. In his neurologist's words: "to say Braydon's seizures and the information surrounding them have been rare is an understatement". So....we are on to our next journey in hopes to find answers soon. Right now our biggest concern with the study is the fact that I will be with Braydon and away from Deacon for the five days. That is going to be so hard. I seriously will need prayer about that. But I know Braydon needs me more at that time. Jacoby will be home with Deacon.
As if that is not enough to have going on medically, there is one more thing we are addressing with Braydon at this time. On another visit to Braydon's homeopathic doctor, we did some extensive lab work that showed toxins in Braydon's blood. To determine what they are we did a metals test. The report showed that Braydon has too high of levels on three different metals, two of which are toxic. Two of them are also related to contrast and machinery used in medical testing. (No suprise there). He has had about 30 MRI's. We are now doing Kelation therapy to try and rid his body of the toxins and metals that were present. We are traveling to Rowlett twice a month for these treatments. We will do this for 60 weeks. :-)
We appreciate your prayers on all of this and we thank you for continuing to care about and follow our family! We love each of you!
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