Medical issue that requires testing?

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Hi. I was wondering if any of your children have a medical issue that requires testing or monitoring. My 6 year old son has a congenital heart defect and has to have an annual EKG and echocardiogram. With his sensory issues it has been a nightmare. He also has a lot of anxiety about doctors and testing. Our next appointment is two months away but I am already stressing about it. They basically told us if he won't lay still for next echocardiogram he will have to have anesthesia (which I really don't want to have to do). Any suggestions on how to help get through this next appointment and these tests? I have used bribery in the past and although I know he wants the toy or reward, once we are in the moment of the test he can't control himself. We are also going to a new hospital this time because his other cardiologist was a real jerk and not patient at all with my son. It's a children's hospital but worried that it being unfamiliar will make it harder as well. I am losing sleep over this. Not only is it scary situation (he may need surgery at some point) but also just getting through the tests is anxiety producing for everyone. I have a fear of putting him under anesthesia for simple testing like this.

We have had to put our son under to get dental work done. Not check-ups, but cavities being taken care of, and that kind of thing. I was so worried, and I can't imagine how you feel, with having to worry about the medical testing results, too.

I know this is not a comparable situation, but my son did have severe have doctor's office anxiety.

Changing locations could help, actually, depending on circumstances. My son hated the first pediatrician's office b/c he remembered the frequent baby vaccinations. When we switched, it was like a brand-new start and the anxiety went away. (The old pediatrician was not very nice, with a child who cried, excessively, either, so changing was good on that front, too.)

I would go a little early, so you take him around to look at things, and let him play with the toys for kids which I am guessing they might have at a children's hospital. That helps for regular check ups with us, as he still worries about shots.



I am so sorry you have all this to worry about.

Thanks so much for the reply. Maybe the new doctor and facility will be a better experience. His old doctor really was very impatient and not good with kids (tons of similar reviews online). Maybe my son sensed that. Also the office was not decorated bright and no toys. Sort of felt like an old office. You brought up another topic---dentist. I feel like such a bad parent. I still have yet to take my son to the dentist and he is 6. Brushing teeth was another nightmare when he was younger. We are in a pretty decent routine now although he won't use toothpaste because of texture. We have improvised and use a fluorinated mouthwash diluted with some water and dip the brush in that. I have to tackle the dentist appointment soon. Everything is so stressful I feel like I am going to crack. I did tell pediatrician we hadn't been to dentist at last visit and she understands why but also brought up anesthesia for that. I am going to at try to get him in for a simple check up (even if it ends up they just looking in his mouth). That will be my next hurdle. I will wait until after cardiology appointment, because I want to ask them about premedication before dental appt (antibiotics because of his heart condition I believe is recommended). I am an anxious person too so it doesn't help the situation. We ended up pulling him out of kindergarten halfway through the year to homeschool. Things have really improved at home. I am exhausted though.

You might ask if the hospital has any way he can come visit the rooms where he will have the testing done and have someone show him the equipment and explain what will happen. Our local children hospital has people who are trained in this sort of thing -- there's even a name for it that escapes me, not social worker exactly but something similar. When DS was hospitalized for pneumonia and had to have surgery to put in a chest tube, the therapist gave him a doll that had a tube and an IV and talked about everything beforehand.

You might also try asking him for his opinion of things that would help to make the procedure less scary and unpleasant.

From what you describe, I do think a change of scenery will be very beneficial. It may not take all the fear away, but I think it might help a lot.

We waited longer than we needed to for the dentist also, for those exact reasons you are. Our son was defensive enough with us trying to brush his teeth, we could not imagine he would let a stranger in his mouth. Make sure you pick a really good dentist. We lucked out in that regard, truly. Not every pediatric dentist is going to be a good fit, even being a pediatric dentist. My niece, who is not on the spectrum, but who I suspect has mild sensory issues, had a terrible time with her first pediatric dentist. He was impatient and annoyed. You ideally want to try to get a recommendation from someone whose opinion you trust.

We didn't have a resource at the time, but we called around at pediatric dental offices and made sure the person had experience with kids on the spectrum. I was very honest about the severity of my son's tactile defensiveness, and we were lucky and got a dentist whose own son has these issues. We have to drive out of town, but that is OK.

We are allowed to bring in our own toothpaste which he prefers. (If your son will not tolerate mint, try watermelon or bubble gum or some other flavor and just put a whisper of it on the brush at first to see if he will tolerate it.) They do not make him do x-rays, and they use a regular toothbrush instead of the usual spinny one as it makes him feel weird.. If they found something of concern and he needed x-rays, they would need to put him under.

As you said, I would also defer dealing with this until after your other issues are done, unless you have to for a dental emergency. We have to brush our son's teeth, although lately we have been letting him do one of the two daily brushings, himself.

People may flame me for not letting him work on this adaptive skill himself, earlier, but we tried letting him do it when it was developmentally appropriate for an NT and he got a ton of cavities. He does not even drink soda or eat many sweets. I don't feel bad about this amount of helicoptoring b/c it is a health issue, and it is risky to be put under and therefore it is important to avoid cavities.

Zette- Thanks for the reply. I will look into that. We still are two months out from appointment so maybe we could set something up. I actually considered trying to buy gel similar to what they use during echocardiogram and try and get him use to it. That seems to be one thing that really gets to him.

ASDMommyASDkid- How old is your son? Your son sounds a lot like mine and you remind me of myself in a lot of what you say. I also brush my son's teeth. Because we haven't tackled the dentist and I know he would probably need anesthesia for any dental work, I need to make sure that a good brushing is getting done. Don't you homeschool as well? I think you responded to an old post of mine when I was considering homeschooling. I sometimes question myself and how I handle my son, maybe I am too overprotective. I think mainly so because most people don't agree with my type of parenting. It's so hard.

I don't know much about your situation, but I do know that I am afraid of anesthesia.

Its a parents job to be protective of the child in their care, and when that child has issues that make the regular world extra hard then the parent has to be extra protective in some areas to give the kid a fighting chance. Its ok to do things differently than the norm, all parents get judged by someone no matter how they parent, and theres no agreed right way to bring up kids anyway. So dont stress about what other people think if what you're doing is working for your family.

I have huge issues with dentists and medical stuff and no amount of bribing,willpower,threats,shaming etc is powerful enough to overcome these physiological based issues. I'm also wheelchair dependant because my legs dont work properly and people dont expect bribery,threats or "trying harder" to change that, and sensory issues are no different. Your son "cant" control his reactions and behaviour at those points, because he doesnt yet have the skills to manage these disabilities. He needs to be taught how to manage them because they wont just magically go away when its inconvienient for everyone that he has them. And while bribery is a useful parenting technique for getting a child to do something they dont want to, it can't make a kid do something thats beyond their ability to do.

There isnt one single thing you/he can do to help him, but several littler things that each help a bit can add up to enough help for him to manage these procedures. One of the things that helps me is weight on my lap/middle/legs,because it gives deep pressure input that helps my brain connect and anchor with my body so it can tolerate the other sensations that are going on higher up. This works kind of like swaddling does for newborns,or wrapping a blanket round the shoulders of a traumatised (physiologically aroused) adult, so its a natural way of lowering arousal and calming people,and it can be exaggerated to help those of us with sensory processing issues. Its a bit trial and error to find out how much weight/pressure is good and where its needed, but it can make a big difference to calmness and tolerance levels. It might be that if your son has a weighted blanket from his waist down it'd be easier for his brain and nervous system to handle cold,squishy,feathertouch gel on his chest. And squeezing hard knobbly/spiky things in his hands is another thing that might override the sensations he's getting from the gel, as well as giving his conscious mind something to focus on,if thats a sensation he can tolerate.

I struggle with laying on my back, so keeping the time I have to do that to a minimum is important for me. Theres often a lot of faffing with medical/dental procedures and an agreement that the patients default position should be upright can help make the time in the stressful position more tolerable.

Knowing in advance whats going to happen, warnings during the procedure about where touch is about to happen, and people asking me if I'm doing ok rather than trying to reassure me that its ok are all helpful things too. Sometimes other people being "reassuring" can increase our stress/arousal levels because our brain quite sensibly concludes that if people are trying to comfort and reassure us about whats happening then whats happening must be scary or painful or bad. But if its done in a more matter of fact way to check that the coping strategies are working to keep the unpleasant sensations manageable,then its more empowering because its focusing the brain on its success at handling the scary situation.

Headphones with particular music or spoken word stuff or audio soundtracks of tv shows can be helpful too. For example if theres an episode of a show that your son watches over and over for comfort then playing that through headphones can help his brain retrieve the pattern for calming him.

Good luck

I have a general fear of anesthesia as well, particularly for a child that has congenital heart disease. Congenital heart disease increases the risk of mortality from anesthesia. I don't know when I would ever feel comfortable putting him under anesthesia other than for a serious surgery. The only thing that I did like about his cardiologist that we are leaving, is that they did the echo the best they could with him crying and wiggling and sitting in our lap. We sought a second opinion a couple of years ago at another children's hospital and they would not do the echo because he would not lay down and stay still. They are the ones that said to bring him back in a year for an echo with anesthesia because they needed a good baseline echocardiogram and that the other echo would not be accurate if he wasn't laying down still. So, last year I didn't go back to them, we went back to his regular cardiologist and again, they at least worked with him in the office and allowed him to sit in my lap,etc. It is such a tough situation. I realize I am rambling here. On one hand, I do not like his current doctor at all,he rolls his eyes at my son, he has no patience, I question how accurate the readings are they are getting, but I am happy they aren't requiring anesthesia. I am trying a new children's hospital locally (we traveled 3 and 1/2 hours to the other one) and hoping since he is a little older, maybe it will go smoother. Thank you for listening and allowing me to air my thoughts. I really am stressing myself over this. On top of it all, his condition is getting worse each year. As a newborn, they told us he wouldn't need surgery until he was an adult, now they are saying he is in the small percentage of cases that progress quicker and he will likely need it sooner (adolescent).

KC73- Thanks so much for your reply. You have some really good suggestions. I have looked into weighted blankets before for him. Maybe this is something I should invest in. Also, along the headphones idea, I am thinking maybe I can let him look at my iphone or something if they will allow it. Thanks again for sharing your perspective of being at doctors and procedures. I am trying to calm myself down. I just made the appointment for September so it has been all consuming my mind the past few days. I am hoping I can use the next two months to help him prepare.

I had to do similar procedures growing up. I found heavy blankets to be really helpful also if his anxiety is really bad a small dose of a benzodiazepine really does work wonders but you might want to wait till hes older for that but keep it in mind as a step before full anesthesia
also if you can find a seamstress they can make you a weighted blanket for far cheaper than if you bought one made. you can get plastic pellets for filling pretty cheaply on ebay all it is in the end is a blanket made of a bunch of filled little pockets

chris5000- I think that is why I hadn't gotten a weighted blanket before. If I remember they were pretty pricey. I thought the same thing about benzodiazepines and was surprised that no one has even mentioned that as an option. If this next visit doesn't go smooth, I am going to ask about that. I would be ok with trying a small dose of a benzodiazepine way before general anesthesia. Thanks for the reply!

lizalou,
am put under a general anaesthetic for all dental work due to severe challenging behavior and for any scans am given midazolam.

one of the things that makes medical tests of any form possible for self including ECGs [had one of those yesterday] is the use of symbols,am shown a step by step routine in symbols of what will see and what will happen,and also the nurses and doctors who will be involved assuming it wasnt unprectible/emergency.
am also allowed to touch the medical bits, the hospitals own intelectual disability nurse has visited home to bring equipment-oxygen masks for example and was allowed to keep them to get used to it all.
before any medical procedures am always given a symbol based walkthrough plan from the entrance of the hospital we will go through up to the room and surgery room itself.

used to have an old digital camcorder and back then staff used it to record the whole walkthrough from entrance onwards-the doctors gave permission for it and was allowed to play this as much as wanted a week in advance.

its possible these things might help him cope with the ECG,have had quite a few of them and they do feel very weird when the wires pull on the pads-it is overloading so can relate to his issues with it.
ask for diazepam well in advance just incase he needs it before the ECG as they cant just go and get it from the pharmacy it has to be prescribed by a doctor.

KingdomofRats- Thank you so much for replying to my post. Those are some great suggestions and helpful to hear what has worked for you to help you tolerate tests. I am going to contact the hospital and find out what they offer and how maybe they can help me prepare my son.

I also went ahead and ordered a weighted blanket as others suggested. I know this will help him with sleep and sensory issues, and can hope maybe it will make the echo go smoother too.

Thanks everyone again.

I think anesthesia is scary for anyone.. My son had to have a cyst removed when he was 14 months old. So he had to have to be sedated for the MRI and put under anesthesia for the surgery. He was very cranky afterwards to the point I couldn't really hold him until it wore down. Some kids get headaches so I wonder if that's why he was cranky. I was told children usually come out of anesthesia better than adults. Hoping the best for you!