Confession of a Special Needs Mom: Do you know what it’s like?

Confession of a Special Needs Mom: Do you know what it’s like? (via http://mylifebeyondlabels.com)

While in the Emergency Department with Rob and Gavin last week I had the chance to speak with one of Gavin’s treating physicians while Gavin was having his MRI. Without meaning to, I stunned him into an uncomfortable silence. I don’t think his years…

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upliftingfam

This is a very stressful process and I have had to do this with my own health.  It is frustrating but I think doctors rather send you some other place than to tell you that they don’t know what is wrong or they don’t know how to help your child.  Sometimes dr hoping is the best thing even though it is frustrating.  I finally found a dr who would listen to me and my complaints and finally figured out the root of my issue to some degree.  I still have other issues going on now and probably will end up dr hoping.  Hang in there everything will work out and stay strong no matter how frustrating it is.

Gilda M Sanchez

I read Lizze’s blog. Going from doctor to doctor is such a stressful process. I really feel some doctors should analyze case histories in depth. This is so crucial because the physical (medical) conditions overlap the psychiatric conditions. Brain and body need to be looked at comprehensively. If Gavin’s cognitive regression and autonomic problems persist, shouldn’t his overall medication be adjusted? Too many meds (polypharmacy) can complicate matters. If you do get Gavin to John’s Hopkins, I hope they can go over his entire case history, especially when he first started taking medications. The Clozapine could aggravate heart rate (noradrenergic effects) and cause cognitive blunting (dopamine blockade in the pre-frontal cortex). Can you ask the specialists about these two problems? As quoted from Stahl’s Essential Neuropsychopharmacology 3rd ed., “Clozapine has the most complex neuroreceptor binding profiles in all of psychopharmacology” and “it’s binding properties are constantly being revised and updated.” Ask tons of questions to the docs there… 🙂

Gilda M Sanchez

I read Lizze's blog. Going from doctor to doctor is such a stressful process. I really feel some doctors should analyze case histories in depth. This is so crucial because the physical (medical) conditions overlap the psychiatric conditions. Brain and body need to be looked at comprehensively. If Gavin's cognitive regression and autonomic problems persist, shouldn't his overall medication be adjusted? Too many meds (polypharmacy) can complicate matters. If you do get Gavin to John's Hopkins, I hope they can go over his entire case history, especially when he first started taking medications. The Clozapine could aggravate heart rate (noradrenergic effects) and cause cognitive blunting (dopamine blockade in the pre-frontal cortex). Can you ask the specialists about these two problems? As quoted from Stahl's Essential Neuropsychopharmacology 3rd ed., "Clozapine has the most complex neuroreceptor binding profiles in all of psychopharmacology" and "it's binding properties are constantly being revised and updated." Ask tons of questions to the docs there… 🙂

Raynette Jones

understand completely. My child/adult is chronically ill – long story – I am sorry for the drs and social workers that had to work with me. I was so overwhelmed and they couldn’t figure anything out and when you hear “have you talked to his oncologist and then the oncologists says have you talked to his rheumatologist” it is like going in circles that I can’t get out of. I cant take him to a regular dr as he will definintely say go to the oncologist (who can’t do anything) or the rheumatologist (who is doing everything he can) and in the meantime the oncologists are trying to see their active cancer patients and the rhuematologist can’t see him for a sore throat (I understand because he is very good and very booked) I always feel that I am letting him down. What if his throat hurting is not throat ulcers and is strep (he usually doesnt have strep symtoms when he has strep) ? I am afraid I will miss something all the time. I know drs went to school, gave a lot up etc., but look I am paying you to listen to me. At my job if I don’t like what comes with the job, guess what, I have the option to go get another one because no one is forcing me to be there. This is America. They have the option to go into research and not ever see a patient.

Alicia Cross

I love this, and after a 20hour stay in the er yesterday with no sleep (over the night), no food, I think you are on to something, these drs have no clue what its like. I too have seen almost every mental health provider in my area and either they will not help or cant. So in the mean time I have a 14 year old child that I cant handle or get the care he needs. Without the right help I have had to put him in the hospital as of yesterday 11 time since july 2011 all for the same thing – he is not safe at home because he either wants to hurt himself or others. Yet I still get no help, they take him for a while can send him back to the people that are not able to help him, so we end up back in the hospital. I hate this!! I am glad you made the dr uncomfortable maybe he will think some more about this issue.

Anonymous

I understand completely. My child/adult is chronically ill – long story – I am sorry for the drs and social workers that had to work with me. I was so overwhelmed and they couldn't figure anything out and when you hear "have you talked to his oncologist and then the oncologists says have you talked to his rheumatologist" it is like going in circles that I can't get out of. I cant take him to a regular dr as he will definintely say go to the oncologist (who can't do anything) or the rheumatologist (who is doing everything he can) and in the meantime the oncologists are trying to see their active cancer patients and the rhuematologist can't see him for a sore throat (I understand because he is very good and very booked) I always feel that I am letting him down. What if his throat hurting is not throat ulcers and is strep (he usually doesnt have strep symtoms when he has strep) ? I am afraid I will miss something all the time. I know drs went to school, gave a lot up etc., but look I am paying you to listen to me. At my job if I don't like what comes with the job, guess what, I have the option to go get another one because no one is forcing me to be there. This is America. They have the option to go into research and not ever see a patient.

Lost and Tired

Don't forget that you can now use Facebook Comments as well. 🙂

lostandtired

Alright. This was one of those situations where a parent who’s desperate for their child just crumbles and a flood of emotion comes out. This doctor was awesome and this was NOT a but down in any way shape or form. 
While I wasn’t a doctor, I was a paramedic for many years and I worked with many ER doctors. This was one of those times that helps a person, doctor or not, gain perspective. The doctors at Akron Children’s Hospital are all amazing and I think the point was that while he didn’t know how to respond, he listened and let her vent. He knew she wasn’t upset with him but instead frustrated by the fact that we can’t help our son to get better.
I will also add that there are plenty of doctors in the world that need to gain perspective sometimes. I’ve worked with some doctors, that while good at their job, need to be knocked down to reality sometimes. As a medic, I treated countless people and after awhile, I became sorta mechanical. A moment like this would have reminded me why I did what I did. 
I’m really surprised by the defensiveness here.

Tammymcgann

I hope it WAS a resident or a fellow, because that experience will change them for the better.  It will encourage them to look ‘outside the box’ for answers; to be willing to move past their comfort zone and truly embrace medical experiences they would’ve otherwise never had the opportunity to experience.  It will make them better doctors.  And since autism (and everything that goes along with it) is becoming so unbelievably common, it’s making them better doctors.  Yes, it’s a humbling experience for residents and fellows to NOT have all the answers, but their more educated counterparts don’t have the answers either.  Hopefully, we’re helping to create a new specialty of “unwitting specialists” who can help our children.

A_person

I speak from a view of a wife of a doc, who was also a resident, almost half of our marriage. These people live and breathe hard work, dedication and discipline for years and years. There are lots of sacrifices that are made by their families and themselves to be there, where they are. They all live and come over the daily obstacles that normally/most people do and still excel at a very arduous job. So overwhelming that guy with your overwhelming problem was not a huge task to do. Plus he definitely showed you respect and his training, patience, by being silent and stepping out. These are still human beings, not gods, who we come to believe, because of their handwork, intelligence and discipline, that they show are almost unreal.
If you sat down some day, and do some research, into what all goes into being a doc, from the time they start elementary school, all the handwork from a parent/family, themselves, girlfriend, wife, kids, I bet you will be as dumbfound as he was, when he spoke to you.

dotdash

lostandtired dotdashI’m married to a resident.  That’s where it’s coming from.  Any time a person “looked at the ground” and “slipped quietly out of the room” you can be sure they didn’t feel exactly wonderful.  Of course, I wasn’t there, but “stunned him into uncomfortable silence” is not part of “the doctors job”.   Don’t they do enough already, working 80+ hours a week to help others?  They are human beings, too, that’s all I’m saying.  We all get to be human beings.  
There is always another perspective. That’s what Lizze was pointing out, I think, and I am just pointing that out as well.

dotdash

I’m married to a resident.  That’s where it’s coming from.  Any time a person “looked at the ground” and “slipped quietly out of the room” you can be sure they didn’t feel exactly wonderful.  Of course, I wasn’t there, but “stunned him into uncomfortable silence” is not part of what doctors are trained to welcome.  They are human beings, too, that’s all I’m saying.  We all get to be human beings.

lostandtired

dotdash I think you missed the point. She wasn’t shaming the doctor. It was more venting about the situation and that’s part of the doctors job.  They listen to their patients and caregivers. 
This happened in a private room and was between Lizze and the doctor. There was nothing public about it and no one was shamed.  
I’m not entirely sure where you are coming from on this one dot.

dotdash

It’s so interesting.  I wonder if you consider what it is like to be that resident?  What you describe doing is taking out your years of frustration and helplessness on a trainee who has been working 80 hours a week doing their level best to learn how to be a good doctor.  This person has a lot of book smarts but (having been in school his/her whole life and having had to pass numerous board exams), but perhaps not so many people smarts.  They are trying to learn to be a good doctor.  And they are trying really hard to help you in a medical situation that you *know* is really tough.   It sounds (from the resident’s reaction) that what you did was to shame the resident in front of his/her co-workers.  I know from your other posts that you don’t like to be shamed in public; I’m curious about why you think that is okay (even admirable) to do it to the resident.

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