I'll try to keep this quick but comprehensive. Naomi had another episode on Wed, which started with her getting weak and then she had a seizure. When we called 911, she was already coming out of the seizure, but was transferred to Sarasota Memorial Hospital. We had spoke with her neurologist previously about the possibility of going down to Miami to meet with a geneticist there. They were unwilling to transfer Naomi to Miami because of the distance, so she was transferred immediately to All Children's Hospital. Unlike the other hospital trips, this time they began an EEG within an hour of arriving at ACH. This was the quickest EEG after an episode we have had... before this the earliest had begun 24 hours after the episode began. As we expected, the EEG showed nothing abnormal. Essentially nothing was "found" but some of the question marks were more definitively ruled out. They discharged Naomi last night and Caleb and I picked her and Shannon up from the hospital.
At this juncture we have a couple of things left to pursue. The geneticist at All Children's was not a specialist in metabolic genetics, so we still need to meet with the geneticist that our neurologist wanted us to consult in Miami. This is to rule out a couple of different possible genetic metabolic disorders. In addition to this, our neurologist at All Children's thinks there is a possibility that Naomi may be struggling with something called Alternating Hemiplegia of Childhood. It is a rare neurological disorder with less than 250 diagnosed cases worldwide. There is little research done but all indications are that it is not terminal and does not lessen life expectancy. The range of experience for people diagnosed with this is extremely varied, but many of them experience episodes that last for days or weeks (which is not the case with Naomi). There are several things that don't totally connect with this diagnosis, but will be researching a bit more about it and will bring it up to the geneticist when we see him.
We're kind of kicking ourselves for not following the food sensitivity diet more strictly during Easter, because then we could have ruled that out as a significant factor. As it stands, we feel strongly that we're on to something with the LEAP food sensitivity results. It may not be that any particular food is "causing" these issues, she may very well have some type of neurological disorder that we can't pinpoint. However, the LEAP test measures the reactivity of her immune system to particular foods. It may be that in exposing her to foods that weaken her immune system, it allows for more severe manifestations of this disorder... who knows? In either case, this provides us with a stronger motivation for sticking to these findings. The dietitian that was sent in to us at All Children's had never heard of LEAP but encouraged us to stick with it strictly if we noticed two months straight with no episodes or symptoms.
Thank you all so much for your prayers! We have felt strengthened throughout this particular event. We're a bit stressed but don't feel like a crash is coming, so please keep praying. After these hospital visits it normally seems like it takes two weeks for life to "reset". We're not feeling like that's the case right now, as we're doing pretty good right now and we're hoping it won't be like that this time but please keep praying. We are in Orlando right now for probably our last visit with many supporters and friends. Please keep praying as we press on towards Brazil and remain diligent in following out the process of obtaining all that we need to in regards to these issues with Naomi. Shannon and I were just remarking as she began walking around this morning sharing new toys with her brother, deciding which of her new toys could go to which of her friends when we leave for Brazil, and asking us significant, meaningful questions about these recent events; that each time she goes through this, she comes out more mature and stronger than before. It still scares the poop out of us when it happens, but we're thankful for Jesus' mercy in the midst of it all. As she was coming out of the seizure at the hospital, she began to cry out for Jesus to come. She's so young and has been through so much, but it is a mercy to know that in the midst of this she's already learning where to turn as she lies in the depths of darkness!
We love you all and are thankful that we have so many wonderful people who are choosing to live life with us -
The Mersingers
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