SN kids who act up at medical appointments--what do you do?

[Ottakee]

I am becoming frustrated (and embarrassed) by the behavior of my kids at medical appointments. They are otherwise very well behaved, never get complaints about behavoir, etc. but at medical appoitnments it is terrible.

 

My 16 year old is the worst. She has a cognitive impairment, bipolar, seizures, anxiety and some PTSD. It is esp. bad at doctors that are new to her. Tuesday we had to get labs drawn--that was EASY as she knows the tech well and can go in by herself and get her 4 tubes drawn. The urinalysis frustrated her but she did that.

 

Then it was on to ultrasound for her kidneys. Newly built Chidren's hospital so new place. She does NOT like this and was crying, yelling she wanted to leave, etc. but she did cooperate enough to get the test done.

 

THen it was on to the nephrologist's office--again new office due to new hospital with a new doctor. She was complaining and just being a big pain in there most of the time as well.

 

Today was the eye doctor where she was yelling, crying, hit the doctor when they put eye drops in, yelling they were making her blind, etc. Again, new eye doctor (insurance reasons) but she hates the eye doctor and eye drops. PIcking out glasses was terrible as well.

 

How in the world do you deal with this type of behavior? It is very anxiety driven as she is a child I could send into a small store on her own to get stuff, pay, and come out. I get compliments on her behavior and manners from the people at Subway/convience store, youth group, etc.

 

She has anxiety over the visits themselves but also she is becoming more and more aware of all of her special medical needs and is very worried about ANYTHING we talk about that might be wrong.

 

She had a FIT when she heard that the nephrologist called and said she had a rather severe bladder infection (they cultured) and said, "I TOLD them it didn't hurt to pee and they are just stupid" etc.

 

While autism isn't an official diagnosis she under great stress can look autistic. SHould I just say she is autistic as people would understand that better?

 

I hate that she is so stressed over these appointments but she has to see quite a few specialist as she has a host of medical issues which can be life limiting/threatening so we can't just "skip" them.

[rafiki]

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[prairiewindmomma]

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Edited November 10, 2021 by prairiewindmomma

[laundrycrisis]

If she had a lot of medical experiences when she was very young, these may have been pretty traumatic for her, because young children feel so powerless. If those feelings aren't processed, the person relives that emotional experience every time a medical situation reminds them of it. Our son needed play therapy with a professional to help him get over his early childhood traumatic medical experience (emergency surgery and a week in the hospital for a ruptured appendix and very critical illness afterward).

[Laurie]

So far, my dd has let medical/dental people do what they need to do, but the waiting room is the part she can't take. So...when I call to schedule appointments I explain the situation and why we would like to have the first appointment of the day. This way, she gets up and doesn't have a long time to complain about having to go to the appointment, and once we get there we spend very little time in the waiting room, the office isn't as busy, and the doctor isn't running late.

 

For us, it's better to go to the eye doctor one day and then pick out glasses another day. Thankfully we live close to all these places so it's no big deal to separate the trips.

 

For dental visits, I ask for a "quieter" time of day when we schedule appointments since it's just one big room with several chairs for things like exams/cleanings. And I make both of my dc's appointments for the same time so I know we're taking up two of the chairs.

 

My ds hates eye drops, too. He's better now, but I used to just tell the assistant up front that I would help hold him still, and I think they appreciated letting mom be the meanie who will get the job done. Sometimes the sweet young things just out of school don't know how pushy they should be with a difficult patient. ;)

[Tap]

I would second a lot of what has been said here.

 

1. Medication can help with the fight/flight response she is showing. A small dose of Clonodine, Ativan, Xanax etc can really help to take the edge off. Honestly, her having this response to dr's makes a bit of sense (vs the grocery store clerk) because drs get into a person's personal space. They ask private questions. They cause discomfort and or pain. They can sometimes be in a hurry and a bit blunt.

 

2. Social Stories can help to alleviate some of the stress. It is amazing when you talk to someone about their perception of events. She may have fears that you don't know about. Break it into small chunks and ask her to identify the steps. Little details may bother her more than others. Like getting weighed or sitting in a cold room in a gown. If those bother her, ask to not do them unless absolutely necessary.

 

3. If she is afraid of new people, maybe a trip on a day when you aren't seeing the doctor, just to meet the staff would help. Go see the room and pick a room that she is comfortable in. If she gets the first appointment of the day, maybe she will be able to dictate which room she can go in. Giving her a bit of control over the situation, would help her.

 

4. I am sure that you have tried rewards. But have you tried rewarding her coping skills along the way. If she has some coping skills like taking deep breaths you can reward that instead of the goal of finishing the appointment. Rewarding the little things she does right, can be more powerful than a big reward at the end of day. Chocolate chips are a common mini-reward here. :D

 

5. We use a lot of sensory tricks with dd4. We let her tromp up and down the stairs a few times before an appointment. I have brought a special blanket, way past baby age, for her to cuddle and smell in the office. We bring electronics to offer noise distractions for during the appointment. Etc.

[Ottakee]

Thanks for the ideas and suggestions. We might ask her psychiatrist about a PRN med for such occassions--but we would have to make sure that it wouldn't affect any testing they might need to do--like neurology, etc.

 

We try the little rewards, have her MP3, CD or DVD player with us.

 

I might ask next time about a child life specialist to be there to see if that helps.

 

There are reasons from her history why these things are more traumatic than they are for most kids and we have done some therapy but it is also harder as she is mentally impaired with autistic tendencies so traditional therapy doesn't always work great.

 

We did find out that she has quite a severe bladder infection (NO symptoms or complaints though) and just having an infection can make her more irritable/sensitive, etc. The PA at the Nephrologist office was great and just ordered a reculture in 14 days but we picked up the specimen cup and wipes and I can just have her do it here at home and then I will run it to the lab so she doesn't have to go in at all.

[Slipper]

My oldest is 11 yrs old and severely autistic. When she feels out of control, she urinates and then strips off her clothing. It doesn't matter where we are at, Wal-Mart, clothes shopping, doctor's office, etc.

 

When she has a medical appointment, I also try to get the first one in the morning or after lunch, etc. If not, I call an hour ahead of time, explain my situation and ask if the doctor is running behind. Sometimes, especially sympathetic staff have offered to call me and let me remain in my car with the dvd player going. Sometimes, if it's especially bad, I can call and they will tell me to come in and go straight to room 11 (or whatever). I try to build relationships at medical offices through thank you notes and using their names whenever possible.

 

I carry an IPAD (I try to find a new free or cheap app before we go) and her Nintendo. I turn the volume down to not disturb others.

 

I try to go alone with her and leave my other two home with family.

 

Sometimes I bring food/drink with me if I know the staff will look the other way.

 

When she mis-behaves, I apologize and tell anyone around that she has autism. The majority of time I'm met with kindness. If she urinates on herself, I clean it up if I can. If I can't, I send a thank you note (and sometimes drop off some cookies or muffins) for the staff/person that had to clean it up. I always carry a towel, dress and panties in a backpack that I take to doctor's appointments.

 

Right or wrong, I've taught my 10 yr old to use our debit card and the PIN number. If my oldest tantrums, we leave and she checks out and meets me at the exit. (We live in a very small town so most people already understand the situation and don't blink when a 10 yr old buys $100 in groceries).

 

We don't stack too many appointments in one day. That's asking for trouble. ;)

 

For YOU, I would schedule appointments on days when you have a crockpot meal going. I don't know about you, but I arrive home with a headache and a sense of overall discouragement. To have dinner already done is a sanity-saver. And absolutely, tell people that she has autism. Most of the people you would explain to are probably those you will never see again. (When people comment on my middle daughter's size, she is very, very small - I just tell them she is small for her age without going into the fact that she has Celiac Disease). We tell teachers and friends, etc but the average person will not interact with her enough to need to know all the details. It just seems simpler. KWIM?

 

Oh, and if you don't have a handicap hang-tag, get one. My daughter is a runner and we have one so we can get in and out of buildings quickly and safely.