I feel bad about all the medical procedures that are forced on DD

[isisreturning]

A co-worker was talking about how he's used tickling games to help his children learn concepts around consent and ownership over their own bodies and setting limits on when touch is or is not welcome (by following his kids' lead - who totally enjoy being tickled -when they say "go" or "stop" to the tickling game). It is such a lovely and elegant parenting technique - and such a valuable skill to teach children. 

And then I had to step away from the conversation because I became so overwhelmed by sadness that DD's experience has been so different. She had an aggressive form of cancer as a baby and went through intense treatment for it, and now has various side effects. She's endured so many heinous, intrusive, painful, traumatic medical procedures that have been foisted on her, against her will, in the name of her best interest (repeated NG-tube reinsertions, injections, IV sticks, hearing aid ear mold fittings... even taking her temperature or blood pressure aggravates her now). She has endured this since she was a baby, and has severe language and communication problems to boot, so we haven't been able to really explain this to her, nor is she able to communicate choices back to us about how to perform the procedures in the least disturbing manner. We just have to go in and do what needs to be done, temporarily ignore her protests, and soothe her during and afterwards. 

Now some language is emerging, and she's beginning to know the meaning of "Stop" and "No" and "I don't like that" and has used those phrases during procedures. And we do it to her anyway. I feel awful about it. 

For those of you with DC's who have low communication skills and high medical needs... have you figured out ways to give your children a sense of choice/consent about medical procedures? I worry that DD is already vulnerable to being abused or manipulated because of her cognitive and communication delays... and we've essentially eradicated any sense of entitlement to determining what happens to her own body. Ugh. Help.

[mammal_mama]

I'm so sorry that I don't have any advice, I just want to give you a virtual HUG. You are such a great momma! I don't know all the solutions to this but I do really believe that since you are seeking, you will find the best path to walk in for you and your precious dd!

[LovnMyBoys]

Your post brought tears to my eyes.  I had the exact same thoughts during ds2's most recent hospital stay.  He too has had to endure many medical procedures, and during the last couple stays many invasive tests were met with "Don't touch me" and "I don't want you to do that".  I believe in respecting my child's opinions and it was so hard to have to assist in overriding those opinions. That and I want him to know he does have the right to say no.  He is very verbal and quite understanding about his medical issues and required treatment, but it breaks my heart everytime.  I try to talk through the process with him before and after and try to view the "what if we didn't" side with him too.  I can see how it would be very difficult to not have that option.  Either way I want to ensure that he does know he has ownership over his body.

[AbbieB]

Hugs from another mother that is going through this.

DS is 3, he has leukemia and down syndrome. He is about 5 months in to 3 years of chemo.

We just went through a month of heavy oral meds that we had to give 2 and 3 time a day. He resisted to the point where I had to lay him on his back, straddle his kicking flailing limbs, and hold his face to get just 1 ml of the stuff in him (he was taking much more than 1ml). There were many times that I just cried while holding him as DH gave him his meds because he was protesting so much.

I have done my best to talk him through everything that is going on. What each medicine is, why it's important, what I or he can do to make it easier, etc...

I have found that giving him event the smallest bit of choice has helped. "Do you want mommy or daddy to hold you?" Do you want to lay on the bed or on the floor?

When we are in the hospital I insist on restraining him rather than a nurse, when possible. I talk him through what is going on. I fight pretty hard to make the number of interruptions or uncomfortable things minimal.

A huge thing has been letting him put on his "safe" shirt or other clothing after a procedure so he knows that no one is going to poke or prod him anymore.  So after he has his port accessed he gets to put his shirt back on fast. When he wakes up in the recovery room and is able to move about I get him dressed pretty quick. It's kind of an "it's over" thing plus he knows he is back in charge.

I have also stepped back from my pre cancer thinking of the less drugs the better. I ask and fight for appropriate pain management and sedation every time. Thankfully the children's hospital we work with is on board with his stuff. I also ask for specific drugs, ones that have proved to be the easiest for him to clear from his system. Most anesthesiologists and other doctors have been great about this. The only folks I really have to stand up to and fight with are the blood and IV teams. Some of the techs are great, some are all business and won't use freezy spray or allow me to hold him for all the begging in the world.

I am completely OK with DS letting everyone in ear shot know that he does not like something. He is in no way discouraged from telling the nurse/doc/tck that he does not want something to like something. I echo his sentiment, "You don't like having your temperature taken, I know." and let him know it's almost over.

Since he is forced to do so much in a medical setting I'm really protective of his autonomy everywhere else. So if he don't want to put his shirt on right no, than he does not have too.

[anj_rn]

I know what you mean.  We very frequently experience the same situations.  I am also a pedi nurse, so I have been on the other side of the bad stuff.  I would start with open and honest communications with the nurses and docs about what works best for your child (less people, giving choices, time outs, clustered care).  Also, giving as many choices as possible, which arm do you want the BP cuff on, do you want me to take your temp in your ear or under your arm?  I am also very upfront with the bad stuff, my daughter is very difficult to stick, so we tell the staff upfront, if you need and IV, you have to call the vascular access team.

As a nurse I would also strive to explain that I did not want to hurt the child, but the pricedure had to be done for this reason.  I would also do things like tell them, you can scream as loud as you want, but you need to hold your hand still.  It was amazing how wonderful kids did when given permission to scream.

HUGS to all the mamas out there who deal with this.

[skyblufig]

The only folks I really have to stand up to and fight with are the blood and IV teams. Some of the techs are great, some are all business and won't use freezy spray or allow me to hold him for all the begging in the world.

My littlest was in and out of the hospital twice in the past 2 months and my dd has JRA, so no stranger to blood draws and such.  That being said, there is NO EXCUSE for them to not use freeze spray or allow you to hold your own child -- these are basic methods of pain management for children and are highly recommended.  In fact, at our city's largest children's hospital they have posters up in every room describing different "holds" parents can do to help their littles through procedures.  It's been proven to help them manage their pain, and those techs should know that if they don't already.  Take it up with the patient reps dept at your hospital if that continues, please!

[PatchChild]

Hugs mamas. It's horrible enough to get adults to accept that painful things need to happen. With DS, sometimes I add in that I know this hurts, but it is the way to make him better, then we get in as much snuggle time afterwards as we can. In these situations, I'm also all in favor of bribes. We just call them rewards. After you do something painful or no fun, you reward yourself with something good. At that point, they've earned the candy, or a video, or a game.

[Treece]

Originally Posted by AbbieB 

A huge thing has been letting him put on his "safe" shirt or other clothing after a procedure so he knows that no one is going to poke or prod him anymore.  So after he has his port accessed he gets to put his shirt back on fast. When he wakes up in the recovery room and is able to move about I get him dressed pretty quick. It's kind of an "it's over" thing plus he knows he is back in charge.

I really like this. I am not in the same boat, but my dd was hospitalized for 10 days when she was 2 wks old for RSV. No she wasn't a premie, she was just a little baby (not tiny, 6 lb 8 oz). Both my ds2 and dd got it. DS2 was lucky got to stay home, dd not so. The hospital let me do as much as I could during the 10 days. I held her during the very occassional blood draw, when the IV was reinserted, during the one injection, and I did some of her breathing treatments. They helped me not go mad in that time span.

That being said, one hospital stay isn't comparable to what many of you have experienced. I want to give all of you a B~I~G group hug .

[philomom]

My dd is 17 and has dealt with JRA much of her childhood. The medicines, physical therapy, serial casting, blood draws and now the Iv infusions once a month are tough to deal with. While I no longer have to "hold her down" I feel it has affected her personality in some ways. Other teens seem so much more carefree.. my child is so serious. It does give me some sadness for her.

[AbbieB]

Originally Posted by philomom 

My dd is 17 and has dealt with JRA much of her childhood. The medicines, physical therapy, serial casting, blood draws and now the Iv infusions once a month are tough to deal with. While I no longer have to "hold her down" I feel it has affected her personality in some ways. Other teens seem so much more carefree.. my child is so serious. It does give me some sadness for her.

I'm sending you some love. That feeling is awful.

I worry all the time what this experience is doing to my little man. I die a little each time he becomes "used to" a new procedure. I hate that he struggles at times, but his acceptance hurts my heart. I don't want him to be used to hospitals.

I know that all of the drugs are changing him. Some rapidly, dramatically (I really hate steroids!) and temporarily, others are known to have wildly variable, lasting side effects that will not be fully apparent until he is an adult.