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Dr.an Extreme Disappointment!


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Hi T.Anna   that is such a gracious response from you....thank you.   I am personally appalled that health care workers would ridicule a child under any circumstances. And as someone who had to h

My last comment on our visit with Dr.N...I hope ; )   Yes, DS's attire reflects his severe OCD. Unfortunately, we are beyond CBT at this point.   I don't feel the comments about "dressing your chi

So sorry for your experience! Keep pushing.   The nurse's empty apology is not good enough. Very unprofessional! Thank goodness your son didn't witness it. You should write them a letter.

I was doing steroids. I had planned IVIG but I wanted to put it off until the summer when I'm off. I'm a teacher. His protocol is 2.g for the first couple and then 1.g for a couple months thereafter. It all depends on the individual. I was concerned because I read on here that 1g was pro-inflammatory, but then he showed me the science. It's absolutely incorrect. 1g is used in autoimmune diseases all time and he said had great success with a lower maintenance dose than nothing.

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Well I talked to my mom who is a nurse and she said that nurses should NEVER EVER do anything like that with the socks incident. She said they should understand with children (who can be rather insistent) and especially children suffering from ocd, besides that there should always be respect and care coming from them.

 

But she also mentioned that a lot of patients won't listen to the doctors she works with and often times (not always) the doctors are correct.

 

So sorry you had a bad appt. I've had some really bad ones and went nuts one time after an appt. in Miami with a so called "top cfs specialist and researcher" - ended up weeping for hours in the car until I became too exhausted, but other people have gotten so much help down in Miami and love the doctors. I guess it just varies from patient to patient, what kind of experience we have, who we connect with, who can eventually actually help. Just sucks!!!!!

 

@laurenK good luck with ivig treatment / I sent Dr. N plenty of labs and records (very expensive labwork I had done at UM) so he should know after reviewing what I sent in, whether or not I am a candidate for his treatment and if it's auto-immunity (my mom will insist on knowing before we go up there, my mom's a smart lady)

QUESTION - how long before you heard back and were able to set up appt? She wanted me to ask.

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(Quote)

'Originally, T. Anna made a comment about the nurses and socks, but my personal opinion is dress your kid right if they can't dress themselves. I'm sorry, but that's how I feel.'

(Unquote)

 

Lauren, you have stated previously you have a son who is going through your same protocol, but, 'had more going on'

Does your son, or you, have OCD? How is he doing on this protocol?

Can you imagine a child who has crippling OCD around their clothing?

I can. Been there, done that.

Trust me, there is no 'dress your kid right' when in the worst of episodes, in order to get them out the door.

You do the best you can to get them out the door without a complete nervous breakdown, literally.

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Of course, I go through the CBT with him along the way because I've been through it myself. It works. I don't let the OCD win. ever. You get up, you do what you have to do, you fight or you wait until the episode is over and then try the CBT. If you let the OCD win once, then you've lost. That's how I get through. I realize what I said could be a little harsh and I do apologize.

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Of course, I go through the CBT with him along the way because I've been through it myself. It works. I don't let the OCD win. ever. You get up, you do what you have to do, you fight or you wait until the episode is over and then try the CBT. If you let the OCD win once, then you've lost. That's how I get through. I realize what I said could be a little harsh and I do apologize.

 

But I think the issue is the nurses making fun of a child's attire. As I mentioned before, my mom who is a nurse said they should understand especially with patients with ocd + other mental disorders, and should never ever treat a patient this way.

 

Also, I don't have a child so I am only speaking for myself but CBT does not work for me at all. I've been doing it with a very good psychologist for the past 5 years and it literally doesn't help. I just lay in bed battling thoughts with "CBT" for hours and it never lets up. I don't really have compulsions though to relieve it, it's all magical thinking, and nothing I say, or anyone else says can take away the constant bombardment of thoughts. And when I finally "win" it literally just switches to something new like instantly and then I have to start the battle again. Only thing that helps is distraction but b/c I'm literally bed-bound most of the time from CFS fatigue, yea can't really distract myself with my eyes shut. I guess I said all that to say, perhaps CBT won't work for every patient.

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My last comment on our visit with Dr.N...I hope ; )

 

Yes, DS's attire reflects his severe OCD. Unfortunately, we are beyond CBT at this point.

 

I don't feel the comments about "dressing your child" are harsh, just misinformed.

 

I just read Howard Hughes: The Untold Story by Peter Harry Brown and DS is in "good" company.

 

This thread and hurt feelings will also pass. Let's remember that there are already thousands of people who judge our disease/disorder and tell us it doesn't exist, let's not act like them.

 

S&S, thanks, yes it is really, really hard.

 

T.Anna - turning the other cheek and moving on in positive directions.

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Hi T.Anna

 

that is such a gracious response from you....thank you.

 

I am personally appalled that health care workers would ridicule a child under any circumstances.

And as someone who had to help a child work through some very severe OCD times, despite the positive impact of CBT, I deeply sympathize with anyone who knows just how debilitating it can be, and how often one needs to pick the battles wisely...with socks ranking really low on that battle list imho.

 

Kudos to you again for taking the high road here.

And on that positive note, I am thinking perhaps we should just close your thread as you have indicated you have made your last comment here.

Feel free to message me if you would like it re-opened.

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