Since my last blog post, Sadie's seizures have gotten significantly worse - the twitching episodes are now happening every 2-5 minutes. After giving Diastat 3 times in 48 hours, we felt uncomfortable managing the seizures at home, and decided that she needed to be in the hospital. Upon our arrival to the ER, Sadie was given a dose of phenobarbitol to calm her brain activity. The medicine completely knocked her out. We were hopeful that it would give her some much-needed rest and seizure relief while allowing for the prednisolone to take effect.
Let me backtrack...after 10 days of crazy seizure activity (every 5 minutes,) we decided to start a steroid treatment, prednisolone. We had previously rejected the steroid route due to their intense side effects - suppressed immune system, irritability, increased blood pressure, weight gain, etc. Also, steroids are typically a short term treatment and sometimes the seizures come right back once treatment ends. Well, after dealing with seizures all day long, we were desperate for anything that might help.
So...back at the hospital...once the phenobarb wore off, Sadie's seizures returned. It seemed that the more mild steroid treatment (prednisolone) was not working. Time to call in the big guns. Desperate times call for desperate measures. Sadie starts her ACTH treatment tomorrow. ACTH is another steroid treatment that we had previously dismissed due to all the scary side effects listed above as well as a high mortality rate due to illnesses contracted because of a suppressed imune system. It was a difficult decision, but we feel like we need to give this a try for Sadie's sake. Our list of options narrow and the choices after ACTH are pretty shitty (excuse my french)...and would include possible hemispherectomy (removing part of Sadie's brain.)
I hope the day is close in the future when I will be able to share some positive news. Thanks to everyone for your contiued support.
P.S. The photo above is my view from my hospital chair...where I get very little sleep.
taking some wise advice from one of your facebook friends...stay strong and remember to breathe
ReplyDeletecathy, please know i am here for YOU and am only a phone call away (day or night. even if it's 3am and you need to talk or someone to listen, etc...call me).
i love you. xo
oh honey..... I am a friend of your sister Pam.... thinking of you and sadie...
ReplyDeleteYour family has been in my thoughts and prayers. I am a friend of Emily Pratt and I have a 3 y/o dau with ACC. Thank you for your blog. Your strength is inspiring.
ReplyDeleteTry to get some rest, my friends. Sending prayers your way.
ReplyDeleteWe love you Cathy and are sending happy thoughts and well wishes your way. You are strong. Adin is strong. Sadie is strong. Believe.
ReplyDeletelove you - Carolyn
I'm so very sorry to hear what you are going through with Sadie. It takes me back 8 years ago when I was sitting right where you are. Unfortunately for us ACTH did no work for Sara. She too was having constant seizures. Before she was even a year old she had a left sided hemispherectomy. It made a substantial difference in her seizures. She is currently on the keto diet which is what has seemed to give us the biggest relief. She also has a VNS. She still has seizures and I have to admit as hard as it is, I have lost hope that she will ever be seizure free. But she has come so far from where she once was. These little girls are so strong. I feel your pain and your frustration. It's so hard to sit by and watch and wait. My thoughts are with you and you are all in my prayers. Hugs and love -- Barbara Hoffman
ReplyDeleteHi, I followed the link from your post on the hemispherectomy group. I'm so sorry to hear how difficult things are with Sadie currently - we remember the worry of continuous seizures, and all the medications, and I hate that anyone has to go through it still. Your post "It gets better?" was beautiful and it resonated a lot with our own experience - the pride we have in our son's progress, despite his challenges, coming face-to-face with the effortlessness of other children just doing what they're meant to be doing, and their parents' lack of wonder at what appears miraculous to us. And a bittersweet sadness at thinking of the walks in the neighbourhood when he was newborn, before he got sick. Thank you for the link to "chronic sorrow" too, it is good to find articulate descriptions of what we sometimes feel. I wish you and your family all the very best and I send you lots of love -- J
ReplyDeleteHi,
ReplyDeleteWe aren't perhaps so far down the road as you guys as our baby Emily who has Aicardi Syndrome is only 10 weeks old. So far no luck with any meds. Keppra has been stared but like you say, after the initial loading dose we haven't had any success. Good luck
Xoxo
Emma, Paul and Baby Emily