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
5 comments:
The absolute sweetest picture! A picture to cherish.
We are hoping and praying for some answers for Braden and Mom and Dad. There just has to be an answer somewhere. But in the meantime enjoy each and every moment and take pictures, pictures, pictures. There is just nothing sweeter than a little baby.
Much love, hugs and prayers,
Aunt Jeannie, Uncle Dave and the cousins
I'm with everyone- that photo is just beautiful!!
Love, Nicki
I love this picture. Mommy loves Braden and Braden loves mommy as he holds on to your finger. Soooo cute! I pray that the additional medication stops his seizures.
Cousin Becky says she calls him Jordan and says to tell you that that is her name for him.
I put out an inquiry to the Shriners and should have a contact for you soon to see if they can help in any way. If not they should be able to refer us to someone who can help. If you do have to go to Houston don't forget that Regina should be able to get you a good deal on a hotel room. We are headed to Denver this weekend for Lance's 4th birthday party. We'll give him a hug from you and Braden.
Love and lots of prayers,
Gram
What a precious baby! I hope and pray for the best for Braden. "The LORD hears good people when they cry out to him, and he saves them from all their troubles." Psalm 34:17
Thank you for keeping us posted on all the news. I trust that there is an answer out there and hope that you find it quickly. God Bless all of you!
Love,
Steve, Kathy Shane and Shannon
What a treasure of a picture, Kodi --- it's beautiful! We continue to hold you close in thought and prayer. We praise God for opening doors for you with the specialist in Houston - that is great news! We pray for you safe travel, much reassurance and guidance as you seek "the best" for sweet Baby Braden. Keep the pictures coming - we love them! And, WE LOVE YOU ALL! Tonya and Co.
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