We are starting her on a high dosage of the same type of steroid that got her to go into remission the first go around, however a large percentage of time the drug will not work. There are a small number of drugs to treat IS, so we are just praying that this will work and we won't need to seek another option.
God has a story to tell with Bug's journey and what a blessing to have her given to us to be on her journey! We don't know His ultimate plan, but we know that as long as we are a part of His plan, that is where we should be. Would you please be in prayer for our daughter? Our hearts ache at the thought of what these drugs are capable of doing to her personality...the fear for us is loosing the happy, full of life and vibrant little girl that we have-to the medicine...they did the last time, and we are just hoping and praying that perhaps they won't do that this time. Drugs don't always react to the body the same way every time, especially when the power of prayer is involved.
Thank you for taking the time to pray for our child...
Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need.
Hebrews 4:16
Hello, I have a google alert for Infantile Spasms because two of my children suffered from them as babies and after years of searching the gene responsible for their cause was found. The gene is called Cdkl5 and I am on a mission to inform other families who's little one has IS about this newly discovered gene and let them know about http://www.cdkl5.com
ReplyDeleteIf your beautiful Kate hasn't already recieved a diagnosis for the cause of the IS and she hasn't already been tested for Cdkl5 I urge you to ask for this to be carried out.
Hugs to you all.