When it came time to see a pediatric neurologist (Dr. F) after Dominic's seizure in June of this year, all I knew was that we were going to have to drive 60 miles to his office. When Dr. F was able to work Dominic into the schedule to get an Electroencephalogram (EEG) of his brain the same day we went to Dominic's first appointment because he didn't want us to have to drive two hours round trip to see him again, I thought that was pretty cool. When I got home from that appointment and found a phone message from Dr. F telling me to call him back because his EEG showed, "intermediate activity," he took the time to explain to me what that meant. When I called Dr. F after Dominic's second seizure, he highly suggested we put Dominic on an anti-seizure medication. As you can imagine, I had many questions. Every single e-mail or call I made to Dr. F was answered promptly, sometimes within an hour. After talking it over with family members, friends and Dominic's psychiatrist, we made the decision to put him on the medication. It was not a decision my husband and I made lightly, given that Dominic will have to stay on the medication for at least two years.
When Dr. F told us we had get an MRI of Dominic's brain with sedation, I asked him to redo the order so we could try it without sedation. After that was unsuccessful, Dr. F redid the order, so we could do the sedation and MRI at the hospital near us.
When the radiologist at the hospital found something on the MRI and told us that Dr. F would need to review it, he took the time to call me himself with the results. Thank goodness, it was a "non-specific finding." Whew. This past Monday, when we went for a checkup with Dr. F, we got the same nurse that we've had before. She doesn't treat Dominic any differently, just because he has Autism, she treats him just like any other 11-year old boy, which I sincerely appreciate. Gone are the days when Dominic would raise a "ruckus" about getting his blood pressure taken. The nurse explained every single thing she was doing and he did awesome! When Dr. F came in to examine Dominic, he spoke directly to him and slapped him a "high-five," every time Dominic did what he asked him to. I was so proud of Dominic, there was only one question he couldn't answer himself. When Dominic reached his hand into Dr. F's black medical bag, Dr. F didn't get upset, but rather said, "we don't need anything in there right now, Dominic." After Dr. F finished the examination, he sat down, looked at me and said, "so, do you have any questions?" After he answered my questions, he then told me that we don't need to see him for another six months! Shortly after I got back home, I sent an e-mail to Dr. F expressing my gratitude. This morning, he wrote me back telling me, "thanks for the kind words." No, Dr. F, thank you for going the extra "mile."
When Dr. F told us we had get an MRI of Dominic's brain with sedation, I asked him to redo the order so we could try it without sedation. After that was unsuccessful, Dr. F redid the order, so we could do the sedation and MRI at the hospital near us.
When the radiologist at the hospital found something on the MRI and told us that Dr. F would need to review it, he took the time to call me himself with the results. Thank goodness, it was a "non-specific finding." Whew. This past Monday, when we went for a checkup with Dr. F, we got the same nurse that we've had before. She doesn't treat Dominic any differently, just because he has Autism, she treats him just like any other 11-year old boy, which I sincerely appreciate. Gone are the days when Dominic would raise a "ruckus" about getting his blood pressure taken. The nurse explained every single thing she was doing and he did awesome! When Dr. F came in to examine Dominic, he spoke directly to him and slapped him a "high-five," every time Dominic did what he asked him to. I was so proud of Dominic, there was only one question he couldn't answer himself. When Dominic reached his hand into Dr. F's black medical bag, Dr. F didn't get upset, but rather said, "we don't need anything in there right now, Dominic." After Dr. F finished the examination, he sat down, looked at me and said, "so, do you have any questions?" After he answered my questions, he then told me that we don't need to see him for another six months! Shortly after I got back home, I sent an e-mail to Dr. F expressing my gratitude. This morning, he wrote me back telling me, "thanks for the kind words." No, Dr. F, thank you for going the extra "mile."
the doctors you have are just amazing. I consider them to be the Angels in your life. Not only is Dominic luck to have them, he is blessed to have you, Larry, and Lauren. Love, Auntie
ReplyDeleteThis should be the standard doctors are held to.
ReplyDeleteWow, 80 days seizure free is great, hope that keeps going higher! Glad you all have had mostly positive experiences.
ReplyDeleteLongest seizure free period we've seen was ~25-26 days, few years ago. Lately avg one SP a week so not too bad (no idea when most CPs happen, but catch one every six months with a few maybes during that time frame). I asked for sedation with the last MRI, my kid would not have lasted for 40-60 minutes for epilepsy protocol (haste is possible without sedation) and the staff there 'helpfully' (not!) lectured me on not using sedation, first bad experience with people being more than tone deaf there. Child's anxiety can get pretty bad at times (seems connected to poor seizure control) and stress/excitement is a very reliable seizure trigger. It's when things get more complicated that experiences tend to go badly for us (have too much of that, and the referrals and insurance approvals are becoming difficult). But in last few months the new epi has outshined all the previous neurologists, least neurology is not part of the current problems with specialists! Love hearing stories of specialists that are keepers, not all are. I also grumble about hospital administration, sometimes it isn't the docs making life hard. If they could double the people and resources for some depts, it would not be enough.