After two weeks of seizures and 11 days of the ACTH, we have not seen any significant improvement of Braden's seizures. At this point we are very concerned about them, because early intervention and cessation from all we have been reading is the key to a positive outlook for his future.
I sent his logs to the neuro nurse, since the doc is out on vacation this week. She called the neuro to ask about my suggestion about adding or switching to another medication. The doc decided we should add one of the medications I suggested (from all the research studies I have read on the subject), and last night we added topiramate to his regimen. Once a day for the first 4 nights, and then twice a day thereafter. I am hoping that this combination will provide some relief and we will see improvement... if we do not see significant improvement when we see the nuero again on Monday, Brad & I will be looking to get to Houston in a hurry to see a specialist we have been reading about who is considered a 'guru' in this area, he is the chief at Houstons' Childrens Hospital (a leading center for pediatric neurology), and is a specialist on seizures and infantile spasms, and has authored many papers and conferences on the subject. He was recommended by one of our home nurses, as Dr. Angus Wilfong was able to help her nephew with great success.
We are hoping medication works, because they say that once you have tried 3 medications without success, then your next alternative is brain surgery, and obviously we don't want to go down that road if we don't have to.
I am currently interviewing ladies to take care of Braden, and think we are close to finding the right solution for us - we will certainly keep you posted as things progress there. Thank you for all your prayers, and please continue to keep us lifted there, as we are on a difficult road and need all the support we can get.
"Bless the Lord, O my soul, and all that is within me, bless His holy name. Bless the Lord, O my soul, and forget not all His benefits: He forgives all your iniquities, He heals all your diseases." Psalms 103:1-3
After two weeks of seizures and 11 days of the ACTH, we have not seen any significant improvement of Braden's seizures. At this point we are very concerned about them, because early intervention and cessation from all we have been reading is the key to a positive outlook for his future.
I sent his logs to the neuro nurse, since the doc is out on vacation this week. She called the neuro to ask about my suggestion about adding or switching to another medication. The doc decided we should add one of the medications I suggested (from all the research studies I have read on the subject), and last night we added topiramate to his regimen. Once a day for the first 4 nights, and then twice a day thereafter. I am hoping that this combination will provide some relief and we will see improvement... if we do not see significant improvement when we see the nuero again on Monday, Brad & I will be looking to get to Houston in a hurry to see a specialist we have been reading about who is considered a 'guru' in this area, he is the chief at Houstons' Childrens Hospital (a leading center for pediatric neurology), and is a specialist on seizures and infantile spasms, and has authored many papers and conferences on the subject. He was recommended by one of our home nurses, as Dr. Angus Wilfong was able to help her nephew with great success.
We are hoping medication works, because they say that once you have tried 3 medications without success, then your next alternative is brain surgery, and obviously we don't want to go down that road if we don't have to.
I am currently interviewing ladies to take care of Braden, and think we are close to finding the right solution for us - we will certainly keep you posted as things progress there. Thank you for all your prayers, and please continue to keep us lifted there, as we are on a difficult road and need all the support we can get.
"Bless the Lord, O my soul, and all that is within me, bless His holy name. Bless the Lord, O my soul, and forget not all His benefits: He forgives all your iniquities, He heals all your diseases." Psalms 103:1-3
Kodi, Brad, & Braden