Wednesday, March 11, 2009

Paige's Knowledge of Her Own Medical History

Over the past 2 years we've covered the topic of "how much should you tell your preemie about their medical history" a few times. I believe it's a personal decision but with Paige we have made her a part of her own care since day one. She has heard her medical history countless times and can pretty much repeat it on her own. She knows her current meds including dosage. We never drilled this information into her head. She has just heard it so many times that it is 2nd nature.

If you would like to read the previous blog posts/comments on this topic, you can do so here and here.

Recently we changed doctors from a family practice doc to a pediatrician. I filled out all of the paperwork ahead of time (it's not a simple task when you have a preemie) and was less than thrilled when the doctor proceeded to ask all of the same questions that I had answered on the extensive paperwork. I was answering them as cheerful as possible, as to not start off on a bad note with the new doc, when Paige spoke up...

"Wait Dr. XYZ, I do have an allergy to medicine. Mom, why did you tell her that I'm not allergic to anything?"

I tried to hush Paige with the usual finger to the mouth but it didn't work.

"Mom, duuuuuh! I can't believe you missed something! hehe" (she always thinks it's funny when she realizes that I have made a mistake-loves to rub it in my face too-lol)

I shot her the glaring eyed mom look and then put my finger up to my mouth to hush her again. I figured she was talking about a reaction she had to a seizure medicine where she lost the ability to walk and see colors-after only one dose. "Paige, your reaction to the carbamazepine was due to an overdose on the doctors part. It was not an allergic reaction."

I looked up at the doctor, still trying to smile through the questions that I've already answered.

"Mom, I'm seriously allergic to Omnicef! DUH! Remember my full body hives? Remember those steroid shots I needed? Remember the doctor telling you to make sure I never have any 'cillins'? Remember Mom? " She then breaks out into hysterical laughter, turns to the doctor and says, "Maybe you better ask me the questions from now on."

At that moment I was reminded of why we have always included her in her care. I was proud of her (even her snarky attitude-lol). I watched, in awe, while she answered the rest of the questions on her own (completely accurately I might add). She is such an amazing child!

I beat myself up over the fact that I forgot such an important bit of information. My facial expressions must have made it obvious too because the doctor leaned over, patted my shoulder, and said, "It's ok. You taught her well."

Ok, yes I learned a lesson. Asking those questions, despite the fact that I had answered them already on the intake form, was a good thing. I will never complain about that again!

22 comments:

Anonymous said...

Helen Harrison writes:

Whenever Ed corrects me on *anything* -- like the date we went to that restaurant on top of the chairlift up in the mountains back in 1996, and exactly what he ordered -- I totally let him prevail, because he is *always* right.

You have to wonder how they can do it...

Helen

medrecgal said...

My situation was always a little weird, because almost from day one I had this natural curiosity about most all things having anything to do with medicine; the funny thing was that even at a fairly young age, I almost always knew more about talking to the medical types about my rather "sordid" history. I could take it to a level that my parents couldn't, which usually intrigued the doctor(s) involved.

What's even stranger is that I remember all sorts of crazy things that happened over the years, and oftentimes I can't remember something simple like what I had for lunch yesterday or where I set down the TV remote. Such are the joys of surviving hydrocephalus, LOL!

Katie said...

That's too funny! And adorable at the same time

Sarah said...

I think you guys have done a really good thing letting Paige be so involved in her medical care - she will go into adulthood much better prepared to advocate for herself in a medical situation than most people do, that's for sure!

Even if she does suffer from Terminal SmartyPantsNess (that's what we call it in our house - or I just call the kid "Hermione Granger - and she's only 4!).

Sheila said...

Katie has little awareness of what happened to her over the years health-wise other than sport related ortho trauma ... she has a VERY vague notion that the scars on her body are NICU souveniers, but she doesn't remember ITP, serious pneumonia's and of course the scary waltz through the NICU (though she's retained a life long fear of the smell of certain hospital or institutional cleaners and antibacterial scrubs (we recently had a "moment" with her in this regard when her sister was at Childrens Hospital last year, she came with the entire Dance Guard (who all adored her little sis Ali) - but when Kate walked into the room, I could tell in an instant that she was having a PTSD flashback due to the smell - she hugged on her sister and the Guard covered her in gifts, games and flowers and Katie said with panic in her eyes - Mom .. I HAVE to go. I said, no worries sweetie ... I knew you wouldn't be able to stay - that's why I didn't invite you in the first place.

While Katie has no interest in her medical history - with Ali, I never talk about the details in front of her because she's a COMPLETE worrywart ...she'd OBSESS over every word and detail and she's never be able to just let it go, so while I'd tell Katie anything she might ask - she has ZERO interest, and Ali who has a million questions, I tell her that if there was something impoortant, I would tell her but otherwise - don't think about it. Every once in a while she'll start to obsess and thank G*d we've reached a place in technology where I can tell her if she's so freakin obsessed- she can google it if she really needs to (sometimes she does, sometimes she doesn't). When she recently wound up waiting for the ortho - she filled out the basic info form and she said "do I put my heart medications ?" I laughed, I said, I don't think your DCM has anything to do with the fact that you fell off your feet because for a ballerina you can be a klutz from time to time LOL. Her obsessive personality is why I didn't follow-up about the neurocardiogenic syncope, once we realized that the beta blockers they put her on for her chest pain basically resolved the most annoying of the vasovagal symptoms. This is the downside to the internet - when she was reading about neurocardiogenic syncope, there are internet sites that talk about that type of problem, but as part of the larger (rarer and completely unrelated) family of dysautonomia issues. When she brought up what she'd read on the internet to her MD, he laughed at her and said "you know Ali, you really ought to check with me about internet resources" ... Dsyautonomia is a serious, serious genetic defect that is incredibly rare, and you wouldn't just pup up with symptoms at 12. He told her about his medical school experience, the hospital in NYC that had a special program for these kids was a scary place, and these were sick, sick, sick kids. NOT just kids who faint when they stand up and have fluctuating vital signs. He said, it's OK to read, but DON'T read stuff that scares you ! Fortunately, that was the right way to handle Ali - because she would have disregarded him had he said "don't read/research" ... but because he said "go ahead and read - but don't be stupid about it"... LOL. My kids know that I will research their questions - and I've shown them both how to vet research - how to find good science. What peer reviewed journals are, and why it's important... how to make sure the structure of the study is sound and that the researchers take the tine to detail confounds and study limitations. They know that one study is pretty much useless... the data becomes relevant when results are repeated. They know how to evaluate anecdotal data.

Recently, Ali and I had a harsh text interchange while she was at school because they were doing an experiment that involved sulpha ... and Ali has completely freaked out...she said "Mom, should I go to the office - I'm allergic" ... I had to get really harsh with her to get her to stop having a breakdown ... Ali ... you aren't EATING the experiment ... and we have ZERO idea if you are still allergic !! You haven't had a sulfa antibiotic since you hived over and wheezed your way into back to back breathing treatments when you were 2 for pete's sake !! This kind of anxiety is why I had to change my "open door" policy that I had with Kate. Each spawn requires their own set of operating instructions. Doesn't seem fair - you finally get a hint of competency and wham ... the rules change.

Sorry for the book Stacy - but this has been a MAJOR topic at our house for the last three weeks.

Anonymous said...

To Sheila:

"I don't think your DCM has anything to do with the fact that you fell off your feet because for a ballerina you can be a klutz from time to time LOL."

Actually, she should put her cardiac meds and history on ALL medical forms. Doctors won't assume a 12yo is on a beta blocker. What if they wanted to prescribe something or have her do something that would be contraindicated because of her medications or other seemingly unrelated medical conditions? That's not something either of you should be guessing about, ever.

sheila Brown said...

She's 14 and of course she'd put the daily atenalol that she takes, under the column "daily medications" ... she'd put tylenol there if she took it every day. The poorly articulated point that I was making is that she tends to stress inappropriately about things she has heard are "wrong" with her - it's good for her to know to listen to her body if for instance, she is having chest pain -she might want to mention that she had a DCM history .... but she needs to learn to compartmentalize a bit and not leap to the worst possible thought every time. And for what it may be worth anon ... you would be surprised at the number of teen girls on beta blockers :-) ...

Tamara Coburn said...

It's so funny, because it's my 4 year old who knows the most about her little 18 month old brother. I have to drag her to all his Dr. appointments. She has a medical vocabulary bigger then most adults now as she explains what pulmonary hypertension is, what an IVH or ROP stands for, what a mic-key button is and more. All in that sing-song 4 year old toddler voice. Her favorite pretend game is... hospital, of course. As she pretends she's inserting IV's, puts on oxygen masks, inserts NG tubes and more. I'm hoping this means she'll be a doctor. :)

Mom to Lilike (Lily) Locke and Anjeni-Katalin said...

I think its good for children to know of the medical history and care they about to go through/discuss when dealing with medical procedures. Helps them understand what is needed to help benefit them and remain calmer and less stressed. Where as with a sick child they have no understanding of the procedures/choices needed when medical staff are looking at/deciding as the best treatments they are putting the sick child through causing the child with no idea whats going on around them to become easily stressed at even painless procedures like looking in an ear or down the throat to say ahhhhhh.



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__________________
"Take care of flowers And open up your heart Because if you love them Your soul must be nice Sandor Petofi Hungarian Poet"
Lilike & Lockes Webpage
dirtydiaperclub.com/sylviessweeties

Sheila said...

I agree that everyone (including kids) should have some concept of their medical history. I think the challenge for some parents is how much is enough, and how much is too much, based on the child's ability to deal with and understand the history. Some people (kids included) are natural born worry-warts. They have enormous difficulty (sometimes impossibility) letting go of their worry and stress over their medical, psychological and emotional issues. Some people (kids included) are great at addressing a specific issue and then putting it out of their minds. I think preemies are different because their medical history probably needs to be regurgitated over and over because a lot of it remains relevant. My kids are weird in the sense that my "preemie" is the queen of Hakuna Matata - she's an extreme example of minimizing - and she'a also lucky that wasn't a serious preemie child - at 33 weeks, she's in that weird zone between pre-term and premature. If it weren't for her pneumothoraces /RDS she could have had an uneventful NICU stay or avoided it altogether. Her school issues, were pretty typical of preemies, but again, as has been mentioned here so many times - some things which are found in preemies are found in the FT population (I only put Katie's in the "preemie" causation) because her little sister doesn't have any of them (which of course could happen if they were both FT so ... not a scientific basis).

My younger daughter has been difficult for me, because I've never known anyone who worries for "nothing" - my entire family was the type to say say "walk it off" unless your injury had actual bones poking through the skin :-) ... it is one of the things which caused me to listen to and have enormous respect for Stacy right from the beginning. She has extremely wonderful instincts on how to balance Paige's need for knowledge with her emotional/psychological stressors. I don't have half the issues she deals with since Ali wasn't a preemie like Paige, and while she certainly has hyper-vigilance ...it's nothing like Stacy copes with in Paige, and yet Stacy is serene ... at 10 percent of that, I get completely irked LOL... Katie and I had a sort of funny conversation this weekend on the way to a drumline comp about Ali - Katie doesn't understand how she could be so different from her. I said, she was different from day 1. I think that is the hardest thing about being a parent - is trying to find the right set of rules for each child and not attempting to apply a generic set of house rules.

ThePreemie Experiment said...

Sheila wrote: "She has extremely wonderful instincts on how to balance Paige's need for knowledge with her emotional/psychological stressors. I don't have half the issues she deals with since Ali wasn't a preemie like Paige, and while she certainly has hyper-vigilance ...it's nothing like Stacy copes with in Paige, and yet Stacy is serene ... at 10 percent of that, I get completely irked LOL."

Now, while I will gladly take credit when credit is due... it may not be 100% deserved in this case. lol Serene may not always be used to describe my personality. lol

Sheila, it was your parenting style, and the fact that you were open throughout the years that has helped me to try to relax and look at the big picture. I still remember when your daughter complained of chest pain and it stopped her from going to a party. I was freaking out and it wasn't even my daughter. Yet, you were calm. I have tried, over the years, to change my behavior to match that of yours. It has helped me tremendously.

Yes, there are times when I am serene. Take for instance what happened on Thursday. We were getting ready to leave for a 9 day vacation (we are in the middle of it right now) and she was feeding off my less than serene mood. We were at Costco (large warehouse where things are sold in bulk) and Paige was having a hard time with her OCD. The word "homicide" was stuck in her head (thanks to her watching Monk while she was not with us-not something I would have allowed). Whenever she would see a knife she would have the overwhelming thought that she was going to pick it up. Well, right there, in the middle of Costco was a display of fancy knives. She sat down on the floor, completely exhausted from dealing with the OCD thoughts, and quite loudly said, "Mom, I am thinking about homicide all of the time. I'm afraid I'm going to use those knives and hurt someone."

Now, anyone who has ever dealt with OCD in childhood knows that she wasn't ever going to actually attempt to hurt someone. She simply could not get the thought out of her mind. I calmly looked back at her on the floor and said, "Up you go." and I kept walking. Oh boy you should have seen the look on people's faces.

At that moment I was serene. I'll take credit for that. But, I could easily give a million examples when I would have earned the title of "Neurotic Mom".

Anonymous said...

TPE wrote: She sat down on the floor, completely exhausted from dealing with the OCD thoughts, and quite loudly said, "Mom, I am thinking about homicide all of the time. I'm afraid I'm going to use those knives and hurt someone."

Now, anyone who has ever dealt with OCD in childhood knows that she wasn't ever going to actually attempt to hurt someone. She simply could not get the thought out of her mind. I calmly looked back at her on the floor and said, "Up you go." and I kept walking. Oh boy you should have seen the look on people's faces.


Let me add a word of caution to this. You know YOUR child. You are reasonably certain that PAIGE would never pick up a knife and hurt someone. I don't think that it would be a good idea to out and out dismiss that statement with a "I know what he/she really meant". PROBABLY your right. But what about the times she ran out in the parking lot because she "had" too - or the times she was rough with her brother because she "had" too - or when she was picking bloody scabs all over her arms and legs because she "had" too. In other OCD kids, the compulsion could run even stronger. What if picking up the knife were the only way to silence the thoughts?

ThePreemie Experiment said...

Oh without a doubt we are on guard with her. I NEVER let my guard down. But, in this instance the entire trigger is around the word "homicide" not the action. It's hard to explain but there is a clear distinction.

As for her sitting on the floor-most of that was for effect. I was running her everywhere that day and she was putting out a bit of drama. Yes, she was tired of dealing with the thought but she was giving her best performance too.

Again, it's hard to get the emotions across in a blog post but I was really not that concerned during this episode.

Thankfully, now that we have the distraction of vacation, she is much better. I'm hoping the word is gone from her head when we return.

Sheila said...

Anon wrote:
In other OCD kids, the compulsion could run even stronger. What if picking up the knife were the only way to silence the thoughts?


Hello Anon -

I'm confused as to your point here ? Paige didn't do anything inappropriate, and Stacy immediately addressed this issue with a clear direction - up you go and they moved on. What is your concern ? In you mind, should Stacy cage Paige 24/7 with periodic breaks for elimination, nutrition and cleaning ? The OCD walk amongst us every day - you've undoubtedly passed them in the mall, perhaps at your workplace or in a theater or park - we don't require them to wear stars on their clothing or have signs over their heads declaring their issues. It is true, that almost every year, parents of kids who are dangerous to themselves or others place them in a safe setting - I've never read anything from Stacy's family that indicates that they are at the end of their tether - or feel afraid to sleep at night (or fear for the safety of their sleeping son).

Anonymous said...

Shelia wrote:
I'm confused as to your point here ? Paige didn't do anything inappropriate, and Stacy immediately addressed this issue with a clear direction - up you go and they moved on. What is your concern ?

In truth, I don't think I expressed my point well at all, sorry. No, I was not saying that I feel Paige needs to be confined, nor do I think that those with OCD (or for that matter ADHD, ODD, or other mental or behavioral difference) need to be branded. My point was that I think it is not a good idea to gloss over or dismiss a statement of potential violence, especially when it is made by a child with a history of lack of impulse control. And, yes, Paige DID do something inappropriate. If she had made that statement in a school setting for instance, it could have had major consequences. Do I think Stacy handled the situation correctly? I wasn't there, but yes. Stacy seems to have an excellent understanding of her daughter, and was probably totally right in her interpretation of the event. The only reason that I commented in the first place was this quote from Stacy:

"Now, anyone who has ever dealt with OCD in childhood knows that she wasn't ever going to actually attempt to hurt someone."

I just didn't want anyone coming away from reading these comments with the idea that violent fixtations in kids should not be considered a serious issue.

Anonymous said...

Anon wrote:
especially when it is made by a child with a history of lack of impulse control. And, yes, Paige DID do something inappropriate. If she had made that statement in a school setting for instance, it could have had major consequences.

Hi Anon,

Perhaps you are fortunate to have your children in private school, but unfortunately, generic, non-specific violent speech would not warrant intervention in most large public school districts. A child with fanciful (if violent) speech may have their choice of words questioned by a teacher, but they aren't sent to further discipline, unless they make a specific, personal threat to another student or group of students. Even then, if the "threat" is verbal, it is very questionable that anything tangible would be done. One could say that this is why that tragedy after tragedy continues to unfold at our schools, but on the other hand, ADA supporters bristle at the infringement on the rights of those with any kind of disability. Where does free speech intersect with threats. Your "neurotypical" 5th grade boy probably says "I'm going to kill you if you do that again to their playground pals dozens of times a year" ... do they actual MEAN they are going to "kill anyone" .. it's doubtful that anyone considers it a legit threat. But ... as the ADA advocates point out - who gets to be the judge and jury ?

When I read Stacy's post, I didn't read any glossing over, I think she described Paiges struggles with obsessive thoughts - but as the defacto judge and jury - she has to be the one to determine, these are merely words (regardless of how scary the words might be to Jane Q Public)

Mom to Lilike Judith (Lily or LJ) Locke and Anjeni-Katalin said...

I congratulate Paiges mom on doing such a great job parenting Paige and guiding her through lifes obstacles. Paiges mom knows of her daughters needs and cares. Or steps she can take to bring calm and peacefulness into Paiges life when the need arises. She knows her daughter is a wonderful intelligent sweet little girl a real blessing. With moms support, support of Paiges family and society Paige has so much to look forward to, life for Paige is to be enjoyed and with so much to offer, in the way of her kindness and thoughtfulness and achievements/goals that brings a joy to others. You can ne amazed when you get down to the level of kids work on there confidence help them see the right path/action to choose life can be a gift to that child and to others.

Anonymous said...

I think it's like suicide, how many people know someone depressed or going through a hard time and hear them mention suicide. There are more people out there that talk about it then the number of people out there that actually follow through and commit suicide.
Just my two cents.
Tammy

Sheila said...

Tammy
Your point and example is excellent. Depressed people kill themselves (and sometimes others), but percentage-wise, the odds are with you to disregard "suicide talk" even in a person you know to be depressed because, it is just that "suicide talk" - if you want to be a really good person and ethically pure, it would be good to grant the suicide speaker some time, TLC and support, and suggestions for improving their status quo. I don't think you'd have their best interests in mind nor a resonable impact on system resources to call the authorities to enforce a 5150 hold on someone. I know there are people out there who have NEVER had a thought about how much easier it might be if they didn't have to consider tomorrow - I just don't know any personally. Violence towards self or others *typically* has an evolutionary path from whimsical fancy to detailed plan and chosing a weapon :-).

I think one of the things which makes it REALLY hard to parent a child with obsessive thoughts is that *sometimes* the correct response is to simply ignore what is being said - paying attention to it gives it weight, importance and value it might not otherwise have. The tricky ... really tricky part is knowing or trying to know how to pick up the subtle clues to distinguish a conversation with a friend like "gee, I wish I was dead" from "I want to tell you how much you've always meant to me, would you mind taking my cat for a few days while you're coming back from a pharmacy trip picking up enough ambien and oxycotin to tranquilze a barn" ... the first one is probably just words, the second one never even mentioned the word "dead" but there's every reason in the world to throw a flag on the play.

It is MUCH harder to know the "right" things to say to someone who falls on the continuum from garden variety hypervigience to OCD ... it took me a long time to learn not to include Ali in a lot of discussions that Katie has always participated in - because if I tell Katie, here's a sticky situation, but here's what we're going to do and I believe everything will be OK, she takes my word... Ali will *obsess* until everything in fact turns out OK. Its torture for her - for Katie it was a huge prize "being included in adult conversations" .. though Ali would "like it" - I can't because it is cruel. I think telling a child you KNOW will obsess things that will trigger that is at the least parental neglect and perhaps abuse. It is a parents job to help frame things for kids who don't have internal frame generators.

Joan said...

Hi Stacy,

Maybe Paige could consider work in the medical field in some way - she already has quite a foundation of knowledge. Even if she gets more of a solid science, medical or technical background and works in research or writing - where she would have more of an opportunity to work independently or even free lance.

I realize this is years ahead but it's a thought that crossed my mind.

Joan

ThePreemie Experiment said...

I wrote: "Now, anyone who has ever dealt with OCD in childhood knows that she wasn't ever going to actually attempt to hurt someone."

and Anonymous wrote: "But what about the times she ran out in the parking lot because she "had" too - or the times she was rough with her brother because she "had" too - or when she was picking bloody scabs all over her arms and legs because she "had" too. In other OCD kids, the compulsion could run even stronger. What if picking up the knife were the only way to silence the thoughts?"

Now that I'm home from vacation I want to address what I wrote and the response from anonymous and others...

I should NEVER have made a blanket statement like the one I did above. Anonymous was correct. Paige has acted on her thoughts in the past. Many times actually. She has hurt her brother and herself, in the past.

I should have chose my words much more carefully. I knew Paige's "thoughts" were out of control that day because of my hyper mood and the fact that she was very excited about going away on vacation. I felt very confident that she would never have actually picked up a knife and hurt someone. Lately she has had great control on her actions. We have been very proud of her and how hard she has been trying. I also knew if I gave her behavior any more energy that the fixation would become stronger-which is why I dismissed her statement and said, "up you go".

Anonymous said...

TPD. Paige said she was "afraid" she was "going to use those knives and hurt someone." What is wrong with saying that? To put the focus on Paige at that point would have been the wrong response I think. Moving on and just talking later was the best response.

I am afraid I am going to hurt someone every time I pick up a knife...not afraid that I am going to do it intentionally, but knives are inherently dangerous and that's a simple fact and a good thing to keep aware of when handling them.

But Paige's confusion about knives was different - it was really a confusion about violence in general. Kids can't understand or make any sense of that sort of intentional violence, nor should they have to. How normal to be aghast at the whole idea of a knife being used to hurt someone. How normal to question why someone would do it, who would be that person, just a person like her? The normal sorts of questions any intelligent person would have when confronted with issues violence like that, issues that are WELL beyond her years to think about.

It's great that she was able to articulate such a complicated feeling so well. She's a smart girl.

I would hope that in school there would be even more compassion for the growing/learning process, not a knee-jerk overreaction.