tag:blogger.com,1999:blog-4863417462909147257.post2194154111812290428..comments2024-01-01T20:33:52.554-08:00Comments on a moon, worn as if it had been a shell: Blog CallElizabethhttp://www.blogger.com/profile/03313726816776097840noreply@blogger.comBlogger54125tag:blogger.com,1999:blog-4863417462909147257.post-22727432860803546352012-10-02T08:14:19.281-07:002012-10-02T08:14:19.281-07:00Wow. This is good stuff. I just peaked at your blo...Wow. This is good stuff. I just peaked at your blog and saw Max and the first grade segment, it brought tears to my eyes. <br /><br />As for the home visit, I will look into the Children's Hospital here to see if they have a similar program or can put me in touch with a willing family. <br /><br />And the local resources for parents, I will remember that. Thank you!Neuro Chick- Kid Dochttps://www.blogger.com/profile/03126571465841640755noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-87236684564380159602012-10-02T07:58:17.548-07:002012-10-02T07:58:17.548-07:00The families are beautiful... I am so truly blesse...The families are beautiful... I am so truly blessed that this will get to be my profession. Thank you!Neuro Chick- Kid Dochttps://www.blogger.com/profile/03126571465841640755noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-64943920406489989432012-10-02T07:56:48.216-07:002012-10-02T07:56:48.216-07:00I see your point. I can "work on my empathy&q...I see your point. I can "work on my empathy" and seek out opportunities to spend extended periods of time with children like Sophie and Pearlsky (what a beautiful name, btw) but I don't live it every day and so you are right. I can't truly "get it". But I can read your blogs and solicit advice and when I see patients try to be the best doctor possible, the one that SEES the patient for all of herself and just not what she cannot do. That is what I am striving for. Thank you for your candid response. I am happy to read your blog, and I am making my way through it now from the beginning... I'll comment there when I'm done. Neuro Chick- Kid Dochttps://www.blogger.com/profile/03126571465841640755noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-28292736024057267702012-10-01T12:41:07.742-07:002012-10-01T12:41:07.742-07:00I have a very simple request: accept Medicaid.I have a very simple request: accept Medicaid.Christynoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-6253137369641184632012-09-30T21:20:12.017-07:002012-09-30T21:20:12.017-07:00I am here, I am reading all of the comments and ta...I am here, I am reading all of the comments and taking it all in. Such love and caring and I am so honored that you have all posted your advice and experiences. Thank you Elizabeth for making this a post. If you want to contact me personally my email is spiceislandqueen at gmail dot com I can then reply and give you my address. I am always happy to read a book. Just another reason I SO love this blog.<br />Thank you everyone and especially Elizabeth! Hugs. <br />-spice island queen (aka Regina)Neuro Chick- Kid Dochttps://www.blogger.com/profile/03126571465841640755noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-5544839117490790682012-09-30T21:09:37.140-07:002012-09-30T21:09:37.140-07:00Thanks Anne. To care, I hope and pray that I never...Thanks Anne. To care, I hope and pray that I never forget to do that. I do think that many doctors still do and if that is lost along the way then I should no longer be allowed to be a doctor... <br />On a more personal note, I hope that you surround yourself with those that do care. I don't have words to express how sorry or sad I am for your son and his so many things, at the tender young age of 3! Thinking of you and your son. Neuro Chick- Kid Dochttps://www.blogger.com/profile/03126571465841640755noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-61482882626602027472012-09-30T21:05:00.816-07:002012-09-30T21:05:00.816-07:00Thank you, I will look into this...Thank you, I will look into this...Neuro Chick- Kid Dochttps://www.blogger.com/profile/03126571465841640755noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-88811499579564527952012-09-30T21:03:02.757-07:002012-09-30T21:03:02.757-07:00Thank you Grady Doctor, it was you that led me to ...Thank you Grady Doctor, it was you that led me to Elizabeth's blog! It means so much to be part of such a loving, encouraging and beautiful blog community.Neuro Chick- Kid Dochttps://www.blogger.com/profile/03126571465841640755noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-64506428874331548632012-09-30T21:01:15.544-07:002012-09-30T21:01:15.544-07:00Going there now, thanks for spreading the word.......Going there now, thanks for spreading the word....Neuro Chick- Kid Dochttps://www.blogger.com/profile/03126571465841640755noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-49090890880313987692012-09-30T21:00:24.523-07:002012-09-30T21:00:24.523-07:00Thank you Cassandra for reading and replying, I am...Thank you Cassandra for reading and replying, I am absorbing these words and I love the final sentiment, "we'll be okay, together", it says so much!Neuro Chick- Kid Dochttps://www.blogger.com/profile/03126571465841640755noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-6356824061672022242012-09-30T20:56:34.179-07:002012-09-30T20:56:34.179-07:00Thank you, I think that Elizabeth is correct in th...Thank you, I think that Elizabeth is correct in that we should have some formalized training so that we can get a small glimpse of your "reality" because you are right, the 25 minutes in the office cannot do justice to what you must have to do every moment of every day., or even the ordeals you face in coming to the office. Thank you for your reminders of the work involved, but also the love. I appreciate your candid thoughts and kind works. Neuro Chick- Kid Dochttps://www.blogger.com/profile/03126571465841640755noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-67282362289792215172012-09-30T20:51:39.872-07:002012-09-30T20:51:39.872-07:00Thank you for sharing, I appreciate your comments,...Thank you for sharing, I appreciate your comments, I truly do!Neuro Chick- Kid Dochttps://www.blogger.com/profile/03126571465841640755noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-57740172481672180032012-09-30T09:33:20.313-07:002012-09-30T09:33:20.313-07:00Dear Future Neurologist,
I am an adult with epile...Dear Future Neurologist,<br /><br />I am an adult with epilepsy. I am a poet. I am a violinist. I write about being a poet and a violinist but I don't write or talk about the epilepsy much because I have found that when I mention it I am either treated like an invalid (meaning in-<i>valid</i> as well) or like a girl about to be pounced up by Salem witch hunters. My epilepsy is well under control now thanks to Better Living Through Chemistry but I still feel shame about it. I don't know what else to tell you except to keep going forward doing your good work and I wish you all the kindness you can find.<br /><br />Rebecca LoudonRadish Kinghttps://www.blogger.com/profile/06534752971317927559noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-27743000783221843282012-09-30T04:26:49.129-07:002012-09-30T04:26:49.129-07:00I have a 17 year old daughter who began having epi...I have a 17 year old daughter who began having episodes of status epileptus at 16 weeks of age and though her seizure frequency has inproved since she was a young child, she continues to have them and she also has been diagnosed with severe cognitive impairments and severe Autistic Disorder (meaning she's labeled "low functioning" on that big ole spectrum) .<br /><br />I agree with many of the others that open communication and empathy are key - i don't care so much how you treat ME, but treat my DAUGHTER like a person even if she is non-verbal, in a diaper, not making eye contact, drooling profusely and doesn't seem to understand. I have had great doctors and not so great. The not-so-great don't look at me, write notes during our entire session to save time, don't encourage me to communicate, offer no empathic responses. the best doctors explain what they are doing and why, write their reports after i leave not during, and act like human beings. At the end of the day i want someone who has expertise, but i also want someone with a bedside manner :).<br /><br />The fact that she is asking these questions means she's already destined to be great! :)Alicia Dhttps://www.blogger.com/profile/06244714478310893367noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-75588479372895060472012-09-29T20:31:13.353-07:002012-09-29T20:31:13.353-07:00About 4 years ago I participated in a "Dear F...About 4 years ago I participated in a "Dear Future Physician" letter writing campaign initiated by a first year medical student. As the parent of a medically complex child, I shared my thoughts in my "Dear Future Physician" letter and from that letter I created a program called "Touchstones of Compassionate Care". Touchstones of Compassionate Care has been implemented at Johns Hopkins Children's Center, CHOC and as a teaching tool at several other Children's Hospitals across the country. I encourage you to go to the website, read my letter and listen to my message. Thank you for asking! <br /><br />Touchstones of Compassionate Care: www.touchstonesofcc.blogspot.com<br /><br />Annhttps://www.blogger.com/profile/10834197308019791700noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-20602074752201894952012-09-29T16:32:58.730-07:002012-09-29T16:32:58.730-07:00please read calvin's story—epilepsy and beyond...please read calvin's story—epilepsy and beyond: A mother's journal of the anguish, grief, joy and triumph shared with her son.<br /><br />http://www.calvinsstory.com<br /><br />thank you,<br />christy shake<br />calvin's momChristy Shakehttps://www.blogger.com/profile/00106761191160700997noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-61804376560411041002012-09-29T10:55:40.850-07:002012-09-29T10:55:40.850-07:00Right back at you. Right back at you. Heatherhttps://www.blogger.com/profile/04209967185741239050noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-5273671869824321222012-09-28T21:49:10.825-07:002012-09-28T21:49:10.825-07:00Doctor! What a remarkable question. Here's m...Doctor! What a remarkable question. Here's my advice. 1) Whether in private practice, a medical group or a larger hospital setting, make sure your patients have access to an awesome "front of the house" staff. I don't need to wait with a wiggly, mysteriously genetically impaired, autistic 10-year-old to see you. And gee, having someone on staff with a razor sharp knowledge of the insurance biz to help and refer appropriately to specialists would be...well, miraculous. 2) Have a jolly attitude and a bouncer on staff to pin down children who need a shot or some sort. And have some candy around. 3) Don't ask mothers about what tests they had or didn't have during pregnancy, even if it is on the intake form. It makes most mothers irritable, one way or another. The horse, as they say, is out of the barn. 4) Get in the child's face and say HELLO! Years ago I had prominent Ear, Nose and Throat doc HUG my daughter goodbye after an exam! Afterwards I wept in the car with joy at his genuine affection for her. 5)I hope that you are a happy sort. Even the most well-adjusted, economically secure family, has dealt with (and/or are dealing with) pervasive, ongoing problems and fears. Having a positive, can-do, "let's try it" attitude is refreshing. Because well-adjusted, economically secure families with a neurologically challenged child are a rarity... 6) Once a month, make a house call to a regular patient. Don't tell me you can't manage it. You just did a million years of sleep-deprived medical school--you can manage a few hours a month to trek across town and see a child. I guarantee you will be enlightened. 7) Be broad-minded. Because when one is a hammer, everything looks like a nail. 8) Spend some time at a school with a disabled population. Reflect on it. 9) Have a rudimentary understanding of the political scene for the disabled and cast your vote. 10) Have the confidence to say, "I don't know." You are in the most mysterious of specialties and we all know it. Finally, I wish I could convey to you how much I appreciate BEING ASKED. No physician has ever asked me this question. My heartfelt thanks.Suzie, Helene's Momnoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-36919158895780775792012-09-28T20:24:23.591-07:002012-09-28T20:24:23.591-07:00Love you HeatherLove you Heatherkrlrhttps://www.blogger.com/profile/14392064691347464660noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-85044817969869585652012-09-28T19:56:17.343-07:002012-09-28T19:56:17.343-07:00Dear Future Neurologist,
It sounds like you are g...Dear Future Neurologist, <br />It sounds like you are going to be an amazing doctor, and your community will be very fortunate to have you. For what it's worth, I will share my wish for the work you will do. Please know that we, parents of patients, are not just moms and dads, but whole people with stories and experiences and fears and strengths and questions. Please remember, as I can tell that you will, that jumping to conclusions about people is not fair. I say this because the first neurologist I went to with my son told me the whole world is divided into only two types of people, types she can identify in everyone within a minute. I should have left before she finished that sentence, which showed me that despite many degrees, honors, and books, I could not trust her, but she had been highly recommended and had a fancy office and I'd already paid my copay, and so I stayed so long that she told me the following: she could "tell" I had breastfeeding issues, that my son only needed a rocking horse to stimulate his brain, that television can cause autism, and that my own history of seizures as a child caused me to worry irrationally about my son. That kind of talk does harm, so I hope you will be a role model for the other docs in your community, because it is clear you have a great many gifts to share. Thank you for all the good work I know that you will do. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-62216547270336460362012-09-28T18:51:47.489-07:002012-09-28T18:51:47.489-07:00I love that you took up the challenge, and so did ...I love that you took up the challenge, and so did all of these other people. I used to have a lovely internist who, on doing my first annual gynecology exam, told me that as a doctor doing his gyn training in Canada, he was asked by some of his female colleagues to get up on the exam table, put his feet in the stirrups and slide his butt down to the end of the table until he was certain he would fall off. Then he was asked to imagine himself completely naked - exposed. He was one of the most compassionate, funny, gentle docs I ever had. Nothing like that "walking a mile in their shoes" training.kariohttps://www.blogger.com/profile/10150537989886423212noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-8200939315207511422012-09-28T14:51:00.665-07:002012-09-28T14:51:00.665-07:00Please, pretty please, do not look my child as a m...Please, pretty please, do not look my child as a medical anomaly when you meet her. Please do not look at her chart and see multiple diagnoses such as: Down syndrome, stroke in utero, rare blood disorder, seizure disorder, leukemia, feeding tube etc and then look at me, a mother at 'advanced maternal age' and think to yourself or utter what has been uttered a few times to my face:" What were you thinking having a child in your forties."<br /><br />Please look at this child as a miracle, if you believe in such things. And if you don't believe in miracles at east look at her with wonderment and awe, that she has defied all medical prognoses placed upon her. Please see her has a human being with worth and value and with a plethora of lessons to be taught to those wiling to listen to her. Even though she lacks the words to speak them.<br /><br />Please, when you say, 'Mother's know their child best and we are 'partners' in this.", please mean that and know, that although I do not possess a medical degree, I fasted tracked it through the University of Learn Fast or be Lost, and I really do know a thing or two.<br /><br />Please realize that although you are probably hands down intellectually smarter then I, this is my child. A child 100% dependent on another human being, usually me, and at the end of the day, I live this 24/7 and it is neither an obligation nor a burden. I am honored to care for my daughter for she has not taken from the life I once envisioned having in my later years but on the contrary, she has gifted me beyond measure. Not just words spoken by a mother who has no choice. I have choices. Lots of them. And had a choice 5 and 1/2 years ago and I chose this life.<br /><br />Please know that more often then not, I appreciate what you do and have deep respect for those who lend not only their brilliance to this vocation, but who bring their heart to it as well. I see with crystal clarity, the ones who bring both.<br /><br />Please understand that without people like you, I know, that my daughter would not be here today and for all that you do, gratitude does usually accompany that giant chip on my shoulder that I walked into your office or hospital with. Promise. Heatherhttps://www.blogger.com/profile/04209967185741239050noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-34139154390452963312012-09-28T12:12:56.606-07:002012-09-28T12:12:56.606-07:00I have a 22 year old son with severe autism. I ha...I have a 22 year old son with severe autism. I have had a wonderful experience with his doctors. Things that help are that they don't make us wait in the waiting room, we get taken to a room right away; don't question why I need a letter to get a service and do it right away; ask how I am doing!; remember my other son during an appointment; once a nurse even came out to my van to give my son his flu shot because he was too upset to come inside the building! Little things like this make our lives a tiny bit easier.Melhttps://www.blogger.com/profile/13961743154341902225noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-63118948834919050662012-09-28T11:56:39.431-07:002012-09-28T11:56:39.431-07:00When we walk into your office, (hopefully not thre...When we walk into your office, (hopefully not three hours after the scheduled appointment time), please look my daughter in the eye, call her by her name and say "hello..". Comment on how nice she looks and include her in the conversation, even though she really can't talk that well. Please, please don't act like she's furniture in the room and that she doesn't know that you are talking about her.Clairehttps://www.blogger.com/profile/13070297384173508509noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-59827002310574059082012-09-28T10:42:44.873-07:002012-09-28T10:42:44.873-07:00My advice would be to see my daughter as a feisty,...My advice would be to see my daughter as a feisty, beautiful person who is as deserving of respect as any other person. Treat her epilepsy (and brain tumors, and blindness and deafness), but try to see through those things to the person she is. Respect her (and by extension, me) and she will respect you.Ashley's Momhttps://www.blogger.com/profile/05621835327282616218noreply@blogger.com