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September 2011 Moms
ALF222
member
Update on Seizures - kind of sad
ALF222
member
Several of you have asked for an update on Julia's seizures, so here goes... She has progressively gotten worse over the last few months. We are under the care of a neurologist, who has prescribed a bunch of different meds, with very little improvement. We finally asked for a second opinion and got some action with the new doctor. She has had a bunch of additional tests (two 24-hour EEGs done, genetic testing done but results due next week, and a high-powered MRI scheduled for next week). He gave us an initial diagnosis of moderate to severe epilepsy. Moderate would be ok, prognosis is ok but not great (developmental delays, but generally functional). Severe is very bad - big developmental delays with regression and cognitive impairment for life. The biggest problems with the severe epilepsy are that the seizures are very resistant to medication (hers are) and the shear number of them is just too much for their brains (she had 27 1-second seizures during her 24-hour EEG).
So, we are taking one day at a time and trying to just think as far as the next test and results. We are starting a new drug tomorrow, so we are hopeful that will help. If it doesn't she is headed towards a Ketogenic diet (like Atkins on steriods), that has shown to help some people with seizures. After the MRI, we will know if she is a surgery candidate and the genetic testing will determine whether this is a genetic issue (which will guide treatment, as well) and also whether one of us passed this on to her. No one can really tell us what her future life will be like, so we just hope for the best and appreciate the good days.
I'm a little MIA these days just because it is hard to read about everyone's milestones - Julia is a bit behind, could be because of her three week hospital stay with RSV, but could be damage to her brain, as well. She is still not reliably sitting on her own and definitely not anywhere near crawling.
If you've read this far, you deserve a medal. I appreciate everyone's good thoughts and support.
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Re: Update on Seizures - kind of sad
So there's this boy. He kinda stole my heart. He calls me "Mom"
Voted "Mom of the Year" 2012 Sweetpea Mom Awards
I don't even know what to say
Im so sorry your family has to deal with this, especially beautiful Julia.
I hope the medication you start tomorrow does some good and pray for good test results in the future. Thinking of you and your family
"What did my fingers do before they held you? What did my heart do with it's love?"
I'm so sorry to hear this
I hope you guys get some good news soon. T & Ps to you, Julia, and your family.
Oh gosh, I'm so sorry to hear this! I'm glad you got a second opinion and this doctor is looking at things differently.
I hope you find some answers in the weeks to come, I'll be keeping you and Julia and your family in my thoughts.
? Voted Cool Cat ~ 2012 Sweetpea Mom Awards ?
No-No-No! The two of you ladies deserve the medal! Looking back at the times I have seen you post shocks me! You are going through a lot of testing, hearing difficult feedback, and still being a damm good mother. I will not even pretend to understand what life is like for you now, but I would like to tell you how impressed I am with your tenacity of getting to the etiology of Julia's medical qualms.
I wish I was in school right now so I could have more resources to help you in any way. I worked with quite a few neuroscientists who are absolutely incredible!!!! I have heard of the ketogenic diet! What does that look like for an infant? Do you have a strong support system? Can I do anything for you or your family?
You and Julia are doing a GREAT job!
Thanks. We are getting a lot of help from my mom and our nanny is a life saver. There is a formula version of the keto diet so I'm thinking we will be using that with some solids as we can (although she really isn't interested yet). It has been hard to learn when to push back on the doctors but my mom is a nurse so that helps. I truly believe Julia was sent to us bc we have the resources (emotional and financial) to get her the best outcomes possible. Thanks for your kind words.
This is inspiring, you are a beautiful person with a great heart. Julia is so lucky to have a mommy like you. I will be praying for sweet Julia and for you to continue to have strength to face this head on. We're here for you anytime you need to talk!
I'm so sorry. I hope the test results show the best possible outcome.
((Hugs))
Big (((HUGS)))
I will keep your family in my thought and pray for some good outcomes for you. Hopefully this new medication will do what it needs to for her.
"Because when you stop and look around, this life is pretty amazing."
~Dr. Suess
Thanks everyone for your kind words.
Not out of line at all... We have found one epilepsy support group, but we went before we knew how bad things were going to be. At the time, it seemed like they were so much worse off than us. But, now it seems like it is where we belong. However, their kids are all older than Julia, so their issues are very different than ours. I do think they will be a great support group once we have a diagnosis and know what we are dealing with.