July 2014 Moms
mamatomp
member
*UPDATE* Thoughts and prayers needed... NBR
mamatomp
member
I don't post a ton but you ladies really seem to reach out when others need support, and I know how strong the power of prayer can be sooo... Sorry in advance for the novel- not really sure how to shorten it!
We have what we have always known to be a perfectly healthy 21 month old boy. Last Friday morning his daycare called me very alarmed that his hands were shaking uncontrollably and his fingers were purple, but not cold... Then it ended in a matter of seconds. Of course I called our pediatrician and took him in right away. He was puzzled and after examining him determined that he was very hyper reflexive, which indicates that some type of neurological activity did occur. He did blood work which came back normal (thus ruling out anything metabolic), and ordered an EEG for Monday morning.
We went in Monday for the EEG and I was less than pleased to say the least. DH and I had to hold him down very forcefully to hold him still while she attached 26 electrodes to his head. It's probably the saddest thing I've ever done to one of my kids. He was throwing a FIT and crying "home..home", I was crying, it was horrible. She started the test but he wasn't being still enough to get a reading... Then 7 minutes into it he ripped everything off. She said his hair was too sweaty to hook him back up and sent us on our way, telling us to call and reschedule. I was furious that I just tortured my baby and paid hundreds of dollars and got no answers bc Nurse Ratchet didn't want hook him back up.
Fast forward to Wednesday... DS was at home with DH and his eyes start rolling back in his head, and then he would just go back to normal like nothing happened. This happened multiple times over the course of the night. Our pediatrician told us to come in first thing this morning. We happened to catch it on video so we could show him and he's diagnosed it as focal seizures. He's consulting with a pediatric neurologist, and we have an MRI and EEG scheduled for tomorrow morning... His eyes have been rolling back throughout the day today and the episodes seem to be getting longer. I'm so nervous for my baby and I just want some answers... Please keep him in your prayers tomorrow as he undergoes testing tomorrow.
**Not a complete update as we still don't have answers, but the tests went well this morning. They put him completely under for the MRI and were able to do the EEG while he was coming out of sedation, which had him awake enough to get a good reading but not awake enough for him to fight it. Within 20-30 minutes of the anesthesia wearing off he was in my arms, and his eyes started rolling back, but he seemed okay for the rest of the day. The results of the MRI were normal, which is fantastic... Now we are hoping the EEG is really able to tell us what we need to know. Thank you all sooo much for the thoughts, prayers, kind words and true concern. It means a lot!
We have what we have always known to be a perfectly healthy 21 month old boy. Last Friday morning his daycare called me very alarmed that his hands were shaking uncontrollably and his fingers were purple, but not cold... Then it ended in a matter of seconds. Of course I called our pediatrician and took him in right away. He was puzzled and after examining him determined that he was very hyper reflexive, which indicates that some type of neurological activity did occur. He did blood work which came back normal (thus ruling out anything metabolic), and ordered an EEG for Monday morning.
We went in Monday for the EEG and I was less than pleased to say the least. DH and I had to hold him down very forcefully to hold him still while she attached 26 electrodes to his head. It's probably the saddest thing I've ever done to one of my kids. He was throwing a FIT and crying "home..home", I was crying, it was horrible. She started the test but he wasn't being still enough to get a reading... Then 7 minutes into it he ripped everything off. She said his hair was too sweaty to hook him back up and sent us on our way, telling us to call and reschedule. I was furious that I just tortured my baby and paid hundreds of dollars and got no answers bc Nurse Ratchet didn't want hook him back up.
Fast forward to Wednesday... DS was at home with DH and his eyes start rolling back in his head, and then he would just go back to normal like nothing happened. This happened multiple times over the course of the night. Our pediatrician told us to come in first thing this morning. We happened to catch it on video so we could show him and he's diagnosed it as focal seizures. He's consulting with a pediatric neurologist, and we have an MRI and EEG scheduled for tomorrow morning... His eyes have been rolling back throughout the day today and the episodes seem to be getting longer. I'm so nervous for my baby and I just want some answers... Please keep him in your prayers tomorrow as he undergoes testing tomorrow.
**Not a complete update as we still don't have answers, but the tests went well this morning. They put him completely under for the MRI and were able to do the EEG while he was coming out of sedation, which had him awake enough to get a good reading but not awake enough for him to fight it. Within 20-30 minutes of the anesthesia wearing off he was in my arms, and his eyes started rolling back, but he seemed okay for the rest of the day. The results of the MRI were normal, which is fantastic... Now we are hoping the EEG is really able to tell us what we need to know. Thank you all sooo much for the thoughts, prayers, kind words and true concern. It means a lot!
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Re: *UPDATE* Thoughts and prayers needed... NBR
I study medications in school and the one thing I'd ask my doctor about if this was my child is what type of medication to administer at home (in addition to maintenance meds to keep him seizure free) in case of a seizure. I don't know that it's the right choice in this situation, but if I needed something for a child this age and wanted to stop a seizure right away, I'd choose rectal diazepam for home use, no question. It's weird and awkward, but it's a really the best drug for home use in the right types of seizures.