We got a whole lot of big results on Tuesday regarding Emmett, and while I shared a piece of the news on Instagram, I wanted to share the details here as well. I know many of you have been following his story and sending love his way, and I have been waiting for the day when I could (hopefully) share this kind of an update with you. Here it is.
On August 9th, after a couple of days of strange but subtle head nods that for the most part appeared to be normal baby movements, this little man was diagnosed with the most dangerous type of childhood epilepsy - one that is profoundly damaging to the brain and has an incredibly poor prognosis in the majority of cases. After exactly 11 weeks, 2 hospital stays, 4 EEGS, 2 MRIs, 1 lumbar puncture, 8 blood draws/labs, over 60 injections of medication into his legs, and countless other tests/doctor visits/specialist visits, Emmett's final (for now) follow up EEG came back NORMAL. His genetic testing results (which tested for 87 genetic mutations that cause epilepsy) also came back and were NORMAL. His follow up metabolic testing after abnormal levels on 2 labs (low B12/high methlymalonic acid) came back with NORMAL B12 and much improved methymalonic acid. Emmett is also now over 10 weeks seizure free, and 3 weeks medication free. In the easiest terms, we could not be in a better place right now in terms of Emmett's Infantile Spasms. We still don't know the cause, but in the case of IS, this is actually a good thing. And there is still a 50% chance of the spasms coming back or other seizures types appearing (after 2 years, the chances will start to slowly decrease). But again, we really couldn't be in a better place. He also appears to be developing normally, but will continue to have a developmental therapist come out to work with him 1-2 times a month, which is fine by us (Early Intervention is an incredible service).
During these past 3 months, Robbie and I have learned the greatest lessons of our lives. (And yes, it sounds dramatic, but that's because it is dramatic.) We have also been reminded of something we already knew - that we are beyond lucky to have a truly wonderful group of friends and family (including here on Bubby and Bean!) who so clearly care about Emmett and our family. We will never be able to thank you enough for the kindness you all have shown through your words and actions - the comments, notes, texts, calls, letters, packages, prayers, and positive energy from all of you is what enabled us to get through the scariest time of our lives without completely crumbling. Emmett may have epilepsy, but he is a brave little bad ass with the most incredible support system of awesome people, and I have no doubt he'll get through it with flying colors and one amazing story to tell.
Finally, through this journey we have realized how important it is to us to help other parents with children who are diagnosed with Infantile Spasms. While it is quite rare (it is estimated that only 1 in 2,500 children are diagnosed with it in the US each year), we have connected and become friends with dozens of other parents with IS kids over the past few months. IS is an enigma, and more research needs to be done in order to obtain more concrete answers about its causes and how it works. It is an incredibly dangerous, potentially debilitating illness that needs to be recognized and treated immediately, but most pediatricians have either only seen 1 or 2 cases in their careers or else haven't seen any at all and are not knowledgable on how to properly treat it. Many neurologists aren't even aware of the best protocol and end up treating with the wrong medications. So in addition to making ourselves available to emotionally help other parents who go through this, we will be working on ways to help fund research and awareness. We'll keep you all posted on that, but in the meantime, if you ever come across a parent of a child recently diagnosed with IS, please put them in touch with us. We will be there for them.
Thank you again, so much. My gratitude right now is truly endless.
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