About a week into Miles' short life the neurologists at Seattle Children's did an EEG to see if he was already having seizures. What they saw indicated he would start having infantile spasms within a couple months - they said it would be a miracle if he didn't. You know the story, we researched, we studied, we advocated and finally we got Miles started on Vigabatrin preemptively in a sort of Hail Mary pass. The cutting edge study we were referencing is only starting to go to clinical trials now and in it over half the kids that started taking vigabatrin as soon as their EEG started spiking still had seizures within their first year of life. Furthermore, statistically, 2/3 of patients with TSC develop seizures in their first year, and nearly 100% of patients that show spiking on their EEG develop seizures within a couple months if the spikes go untreated. So we were fully expecting them to start and anxiously on guard. However, we knew if we could make it a year without any type of seizure, he had a much greater chance of having a positive developmental outcome and possibly being able to one day live an independent life.
A few months back our neurologist felt Miles was likely having SMA seizures based on a description I provided of a movement he was doing and our hearts dropped because we felt that we had missed a seizure type and had lost our statistical advantage. We increased his meds and they seemed to go away. Then the week after we got back from our San Diego and Disneyland trip we weaned Miles to whole milk since he had just turned one year and suddenly those movements were back in full force along with other movements frighteningly similar to infantile spasms. After three days in the hospital, the doctors were basically wringing their hands worrying about Miles but at a loss as to what was causing the movements. The team decided it was most likely severe reflux manifesting itself as Sandifers Syndrome and not neurological in origin but seemed pretty unsure and we were extremely nervous heading home with a maximum dosage of Omperazole. Of course no pharmacy on the island had the medication Miles needed so it took three or four days after we got home before we could start him on the medication and during that time I nearly booked us a trip to Cincinnati Childrens Hospital which is apparently the top children's hospital for TSC for a second frantic opinion. I was beside myself with anxiety. Then ONE day after starting Miles on his reflux medication, ALL of the movements disappeared. We tried weaning him about three weeks later and the movements immediately returned but as soon as he was back on his full dose they were gone again.
Surpassing every expectation Miracle Miles has not had any seizures. I cannot begin to tell you of the burden I feel lifted knowing all those strange movements we had seen over the course of his life are attributed to reflux. The odds are in our favor now and though there are stories of kids who have poor outcomes even after starting seizures later in their life, those are few and far between. Plus, as icing on the cake, controlling Miles' reflux has made him such a happier baby and his babbling has really taken off. It seems he says "Hi, Mama, Dada, dog, vroom vroom, woo hoo, again, yea" and "All done." He is cruising along furniture, can stand for 10+ seconds on his own and can climb as well as a three-year old. He is globally a little delayed, and he won't point or consistently say his words, but he gets his point across, and he is so very social. We are overjoyed with how well he is doing.
Our next round of specialists starts back up in September so I'm sure they will be stoked to poop all over my optimism but for now I'm feeling pretty giddy about our month away from the hospital, the incredible summers on Bainbridge Island, and our Miracle Miles.
A few months back our neurologist felt Miles was likely having SMA seizures based on a description I provided of a movement he was doing and our hearts dropped because we felt that we had missed a seizure type and had lost our statistical advantage. We increased his meds and they seemed to go away. Then the week after we got back from our San Diego and Disneyland trip we weaned Miles to whole milk since he had just turned one year and suddenly those movements were back in full force along with other movements frighteningly similar to infantile spasms. After three days in the hospital, the doctors were basically wringing their hands worrying about Miles but at a loss as to what was causing the movements. The team decided it was most likely severe reflux manifesting itself as Sandifers Syndrome and not neurological in origin but seemed pretty unsure and we were extremely nervous heading home with a maximum dosage of Omperazole. Of course no pharmacy on the island had the medication Miles needed so it took three or four days after we got home before we could start him on the medication and during that time I nearly booked us a trip to Cincinnati Childrens Hospital which is apparently the top children's hospital for TSC for a second frantic opinion. I was beside myself with anxiety. Then ONE day after starting Miles on his reflux medication, ALL of the movements disappeared. We tried weaning him about three weeks later and the movements immediately returned but as soon as he was back on his full dose they were gone again.
Surpassing every expectation Miracle Miles has not had any seizures. I cannot begin to tell you of the burden I feel lifted knowing all those strange movements we had seen over the course of his life are attributed to reflux. The odds are in our favor now and though there are stories of kids who have poor outcomes even after starting seizures later in their life, those are few and far between. Plus, as icing on the cake, controlling Miles' reflux has made him such a happier baby and his babbling has really taken off. It seems he says "Hi, Mama, Dada, dog, vroom vroom, woo hoo, again, yea" and "All done." He is cruising along furniture, can stand for 10+ seconds on his own and can climb as well as a three-year old. He is globally a little delayed, and he won't point or consistently say his words, but he gets his point across, and he is so very social. We are overjoyed with how well he is doing.
Our next round of specialists starts back up in September so I'm sure they will be stoked to poop all over my optimism but for now I'm feeling pretty giddy about our month away from the hospital, the incredible summers on Bainbridge Island, and our Miracle Miles.
***
No comments:
Post a Comment