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Thread: OK So this is my new, great idea!

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    Default OK So this is my new, great idea!

    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna))))))

    I like Dr. Kleinman's 8 questions. As I ponder them, I feel that I can say that those questions have been addressed typically with regard to my boys through the years. And definitely more so as they aged, and I became more educated in medical terminology and side effects. If the doctors don't pursue the answers to those questions, I offer the answers before they ask.

    But I definitely think that those questions are applicable to non-immigrant situations. Just because we speak the same language doesn't mean that we comprehend the terms or messages the same way.

    I'll be interested in Dr. Kleinman's response to you.

    As always, thank you for your advocacy and your important, thought-provoking topics.

    How is Nick feeling today? I hope these episodes aren't returning. What is prompting them?! I understand so well your frustration, and I'm praying that the new neuro can figure it out.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Hi Rose, well, Nick didn't have a good day today - or yesterday or the day before. Today and yesterday, we just lay in bed together cuddling and we both fell asleep - I don't know what is going on and I've been googling brain stem seizures thinking maybe it's that... not sure. He has nausea, vertigo, headache and then falls asleep. Sometimes low body temp. So, not sure what this is. I'll keep you posted on what Kleinman says - I find his questions so simple and fascinating - the language of biomedicine can be so opaque! And the power structures of medicine!!! Anyway, I think I really like Dr. Kleinman. I hope you guys are doing well - how is Jon??? xoxoDonna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Sorry to hear Nick is not feeling well again...hope his doctors can figure out the cause! Caitlin had 2 seizures tonight...it's been 2 months since her last one-a bit of a bummer to as she has a neurosurgery annual follow-up appt this friday and I was looking forward to going in for a good visit. So frustrating this random seizure stuff is! Anyway, great blog post! I love reading about medical ethics. I really do think that even though we're all english speakers, talking with medical professionals without knowing their language (jargon), can result in big miscommunications. I also look back at various situations we've been in over the years and think, if only I knew then, what I know now! The more experience I get the more comfortable I feel speaking as an equal to her doctors. It was interesting when Tyler had his tonsil surgery tuesday, when we were in the prep area, the nurse had a bunch of paperwork for us and one of the things was that I had to describe in my own words the procedure being performed and she had to write down exactly what I said. I wonder what they do if you can't describe it?! It said, adenotonsillectomy on the sheet and she wrote my words under that...."tonsils & adnoids taken out". I actually knew the real name of the procedure...should've tossed that out for the answer! LOL! I think about that often though, how it must feel to try and navigate the maze of the medical industry when you don't know how. I used to work for an insurance company so when we first had Caitlin, I was not shy about calling up and questioning billing stuff. I remember getting over $400 back in wrong charges! It took awhile for me to learn how to talk with the doctors though....

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    ((((((Donna))))))

    I'm so sorry to hear that Nick's still dealing with this mysterious "thing." Two thoughts I have: hypothyroid and hypothalamus. The sub normal temp is one clue to both of those hypos. It might be worth a blood draw to check his thyroid. The hypothalamus is the body's thermostat in the brain. It's also the location from which gelastic seziures emanate. I wouldn't rule out abdominal seizures either.

    In addition to wondering what the cause is for these episodes, their occurrence then remission then recurrence is something to ponder. Why the same time of day? Why did he go for 3+ weeks without these symptoms, and then they appear suddenly? This may sound odd ~ but it seems rhythmic in a way. Or is there a specific trigger?

    Would Dr. Kleinman's questions be useful for the new neurologist? Have you tried answering the questions as if they are being asked of you about Nick's episodes? If not, give it a whirl, and if so, please share your findings.

    Thank you for asking about Jon. He is doing well. He's fine, so we're fine.

    Prayers continuing ~

    ((((((Lisa))))))

    Oh, I'm so sorry to hear that Caitlin has had 2 seizures. How is her Depakote level? Could that be a potential reason for these breakthrough seizures?

    In a way, it is fortuitous that you're seeing the neurosurgeron, so that you can report the good news that Caitlin was seizure free for 2 months, but that she had these 2 seizures, and then you can ask for an opinion on the possible reasons for the 2 seizures. The sooner you have an idea as to the cause, the sooner you can address it.

    Of course, I wish with all of my heart that Caitlin didn't have those 2 seizures, but if she was going to have them, it's better that she had them before the neuro visit than after.

    Experience is the best teacher.

    Praying for no more seizures.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Hi guys, Oh Lisa, I 'm so sorry about Caitlin's seizures. Rose is correct though (sad face here) that it's better she had them before the doctor's appt. Well, I've been thinking about that blog post and I'm hoping that people don't read it that I feel WE need the eight questions to reveal our own poor understanding of the 'good' or the 'better' biomedicine! The point I want to make is that we need a dialogue and sometimes the power structures and the language of the biomedical culture make that almost impossible. Anyway, I hope people get that because I would really like to talk about that. Sending lots of love to you both and of course your gorgeous families xoxoDonna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member andromeda31's Avatar
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    I am struggling with that (needing dialogue) with Caitlin's new neuro. Her former one moved out of state in May. We just switched to a different one within the same practice. It's been ok, but he is not as good of a communicator as our former one was. Same with the nurses....our nurse that worked for the last one, I was able to email. The nurse for the new one, I spoke on the phone one time with her this summer and I asked for her email (I prefer that as then there is a written record) and she flat out said no. Hmmm. The hospital is currently switching to electronic records, this month I believe as I got a letter about possible longer waiting times for appts while they learn new system. I hope it is similar to what our local drs have where I can send an electronic message (not email) and they have people check them daily and it becomes part of the electronic record. That would be fine with me. I just hate the phone calls, they always seem to get me when I am not at home or busy with kids...it's just plain inconvenient for me! Anyway, I talked with another local mom whose son saw the new neuro also and she had the same impression, she said he seems like the quiet mad scientist...just quiet and not very talkative and when he does it is over your head. I feel in our case, he didn't really explain much to us, mostly let the (female) PA (physician assistant) talk. Personally I don't much care for the team up and talk to the patient (and mom) approach. (there was also a nurse or 2 if I remember right). New neuro sat in a chair in the corner while the 3 ladies talked at me (this was when we started felbatol this summer). IMO, he should have been explaining this stuff. I prefer direct dialogue not going thru layers of underlings. We'll see how this works out! I think it is always a bit rough when starting over with someone new. We see new neuro at the end of this month so it works out good that we see neurosurg this week. We've been with him since 2005 so I feel more comfortable speaking up. I could go on all night about communication troubles with providers! I agree, it shouldn't all be placed on our backs, they need to make sure families understand everything in plain english (or whatever language!) not just talk at us for 5 min and leave the room.

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Agree, Lisa!!!! In fact when I was in LOndon and we had the most marvellous palliative doc from the hospice managing the pain, he made home visits and stayed for over an hour sometimes, just hanging out and he would NOTICE so much about Nick. His idea was to join up with a specialized team at the London School of speech and drama to do a training module for palliative docs on how best to deliver bad news to patients. It was such a great idea and even a great starting place for a great idea. we need more like him, eh? xox
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    ((((((Donna))))))

    I didn't mean to imply that the 8 questions were for us, when I asked whether you had applied the questions to Nick's mysterious episodes.

    But I do think that they give us a good guideline to frame our questions and our responses to the doctor with whom we're discussing our child's condition/issue. Anything, which helps us to communicate better with the doctors, is a benefit, I think.

    I don't know how we get doctors to be better communicators. Neuros, in my experience, are especially poor communicators. They have very large egos, because they deal with the B R A I N (imagine that word being said in an echo chamber). And since the brain controls everything, they think that they are the head honchos of medicine. My boys have seen so many neuros through the years in various states, various hospitals, exclusively for seizures, that I've lost count. It has to be dozens or more. And I have never met a single neuro, who had good interpersonal and communication skills.

    On the other hand, the Chief of Cardiology happened to draw the on-call straw for the Step Down Unit, the last time Jon was in the hospital. Of course, Jon is not a cardiology patient, but the doc knew us from 2009, when he did a bedside scope to check out Jon's heart. Jon had had an echocardiogram this time around, so the doc came into Jon's room and explained everything to me about it, while going through Jon's chart with me on the computer. Then, he just started chatting like we were old friends, and I thought, "doesn't he have other patients to see?" And then he hugged me!

    Doctors are people, and they're scientists, and they're overloaded with patients, and their minds are on the go constantly diagnosing, treating, and making decisions about their patients. Sometimes they become distracted by all of that and forget how to be a person.

    I've watched doctors in ICU giving the bad news to families so many times, and each time I realize how hard that must be for that doctor to tell someone that their loved one is dying. And how hard is it on them that they cannot save their patient. Or that they can't figure out what is wrong with their patient or what to do to cure their patient. The frustration must be immense.

    I also know that doctors can change over time. That was proven to me this past June, when the intensivist/pulmonologist, who has said some pretty hurtful things to me in the past more than a few times, and has shown me a lack of respect and compassion, suddenly changed into a kind, caring man, who approached me with a softer tone, and a willingness to hear my side.

    That was likely the result of a few factors ~ I suspect a couple of nurses, a nursing manager or two, Jon's previous intensivist/pulmo from 2009 (who moved to a different group which doesn't take Medicaid patients), and maybe the social worker and nutritionist might have said something to him about lightening up on me a bit. They see my stress daily, and they understand it. They hear me gripe about the docs, who mistreat me and don't show an interest in Jon, and they agree. They know that he isn't a good communicator, so they're trying to show him the way to better communication.

    Another factor might have been the tearful meeting I had with this doctor and the nursing manager ~ the meeting that sent me home that evening with a sick headache. I think he finally recognized the magnitude of Jon's condition and its impact on me as his mother.

    He was a changed man with me. He always cared about Jon, but I was like an irritant with my questions and my refusals of certain meds. He seemed to understand me better, and he approached me as a member of the team.

    And this is a relief, because the next time Jon returns to the hospital, and let's be honest, there will be a next time, this doctor and I will have ironed out all of our issues, and that will reduce the stress of Jon's illness a million percent for me. My heart won't start pounding out of my chest when I have to talk to him, and I won't be afraid to ask questions. And I'll know that he now accepts humor as part of our deal. That is very important to us in surviving a crisis.

    Well, I think I've derailed here ... gotten off on a tangent ... ! But I hope I have a point in here somewhere.

    Thinking of you both and your sweet children and sending healing prayers your way ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Thank you for your reflections Rose (which are full of truth and wisdom as ALWAYS!!!!) I wanted to let you know as well that yesterday we had a big meeting with the staff at Rotary and the two things we are going to investigate are (you said it first) Thyroid and also vasovagal response. The latter, the nurse said she had seen before in Long term care when people are on a lot of bowel stimulants. Both of these are very possible culprits for Nick's symptoms which are continuing every day. We have an appt with the neuro on the 27th and he's new. Our lovely old one retired so I hope this one has better manners than the gastro doc we saw the last time!!! Sending love and cyber hugs, xoDonna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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