Musings of a Marfan Mom

Holy Tantrum, Batman!


As many of you may know, the Menininho has been sick since mid last week. It’s actually the first time he’s really been sick, unless you count that bout of cellulitis. Even then, though, M didn’t act sick. This stomach bug has just knocked him over, poor guy. Since Wed. night he’s been huddled in a ball on the end of the couch, occasionally asking for “ee-vee”, “wahh”, or “eat.”

Saturday I could tell my toddler was dehydrated. We’d been trying to get fluid in him for days and he just wasn’t willing. I called the pediatrician on-call to confer. She wasn’t one we’ve really seen, so I cut her some slack when she suggested my son should be able to tell me where he hurt and that I ought to be able to force him to drink. (Really? Who can force a 2 year old to do anything? Plus, that whole autism thing sort of gets in the way of communicating more complex ideas like pain.) In the end, it was decided that he should make a trip to the ER.

My very capable husband took him while I stayed home with Baby J, which just about killed me. IV fluids and some dextrose for his low blood sugar later, M was doing a lot better.

Cut to today. The pediatrician we spoke with wanted me to bring in M for a follow-up visit this morning. The pitiful looking toddler made me carry him on one hip while carrying the baby in his carseat on the other (don’t tell my cardiologist!). Once at the doctor’s however, M was all smiles…playing with toys in the sick waiting room and walking all by himself to the exam room.

It all went downhill fast. The pediatrician ordered a blood pressure check, which M has seen me do on myself plenty, and doctors do to this brother, but has never had it done on himself. The nurse was trying to explain but she was being too complex for him to understand and M flipped out once the cuff tightened. Then the baby started crying, which he hates, and this new doctor he didn’t know came in and that set him off head-banging, thrashing, and screaming. I eventually got him calmed down, but he started back up again when I explained it was time to go home (transitions are difficult).

M tried clinging to my leg and crying.

Then he threw himself on the floor. I left him there, took Baby J to the waiting room, and then came back to half walk/half drag M. I knew he could walk and I really needed him to; carrying him, the baby, the carseat, and the diaper bag is at least 45 lbs and that is a Marfan no-no.

Well, we made it as far as the front desk. There the Menininho jerked himself free, fell down, and lay flat on his belly screaming.

Yep, I took a picture

Normally, I go sit down and let him wear himself out. After a minute or two though, I realized this was impeding the receptionist’s ability to make phone calls. Luckily she took pity on me when she saw me scoop up the Menininho and carried Baby J to the car for me. This was a lifesaver, as M decided to go stiff as a board. Once I tried to get him into the carseat he jumped up and twisted himself such that he looked like he was being exorcised.

It was REALLY hard not to laugh.

Anyone else have super fun doctor stories? Parents of kids on the spectrum: anything you do to help prepare your kiddos for surprise doctor visits? I emailed M’s new behavioral therapist about it, but I’d love to hear what works for you!

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  1. H isn’t on te spectrum but we have these high level tantrums at times too. Always more when she isn’t feeling 100%. Hope he and J are back to normal soon!


  2. Unfortunately, we are bribers. If Chaela starts to act out in public I offer her a) candy b) a hamburger (if it’s mealtime) or, most frequently c) time to play games or watch a movie on mommy’s iPod.
    I know it’s not something a lot of people approve of, but hey, it works, and since we’re pretty strict parents at home, I don’t mind giving her something for good behavior every once in a while. (And buying “treats” from bulk candy=extremely cheap, so why not?)


  3. Bless you for that last sentence!! Glad you could say “laugh” and not “cry.” Been there, esp in the grocery store and those gd candy checkout aisles. I too do the “let him scream it out” but yeah, not always a lot of support from onlookers. As they’ve gotten older, I tell them they may choose ONE small treat – either a hot wheels or candy bar etc, and nothing else. That has much derailed the store tantrums.

    Hope M is feeling better. February was not kind to us. Two of my boys are likely going to be scheduled for tonsillectomies soon.


    marfmom Reply:

    Oh no! Will you be able to at least spread out the surgeries so you don’t have two kids recovering at once?


  4. Been there, just remembered, going to my happy place, um, um, …….Now for you my love, you did exactly what you should have done, minus the carrying M and J into the drs office. I so suggest a baggie with different bribes in it. You have enough to worry with so anything that works is worth it.


  5. I remember the time your pediatrician asked you to open wide and you said no. I said, open your mouth, and when the dr tried to hold your chin, you hit him. And you were not two!


  6. Obviously I have no advice or stories, being as I don’t have a kid to take for doctor’s visits…but I had to comment because I LOVE that your mom commented on this with a story about you. I’m am LOLing. :)


  7. We don’t have a kid on the spectrum, but we do have a kid who HATES doctor’s visits. She would start to scream the second we hit the parking garage for the doctor’s office and not stop until we were buckling her in to go home. We asked her pediatrician for ideas (I was desperate!) on ways to make visits a little easier. Her best suggestion was a doctor’s kit. We got the little Fisher Price doctor’s kit for her and it was worth every penny. She takes it with her to doctor’s visits and gets to “help” the doctor with various things. Maybe something like that would help M too? We also found a few books about doctor visits and she loves those.

    Also, I love that you took a picture of him lying on the floor during his tantrum! Hilarious!


  8. Sounds very similar to what I dealt with when Zachary was born. The double stroller helped a lot. Sometimes it was hard to get Landon buckled in when he was throwing a fit, but once I did he could scream all he wanted and I would just walk a little faster.


  9. Bless your heart! My only advice is to take another set of hands for doctor’s appointments. All of my kids have thrown tantrums like that in public. You are not alone!


  10. Social stories work wonders. I know he won’t understand everything, but if you tell it like a little fairy tale type of story, it will prepare him for the transition better. Also, you can try “talking” about something that fixates him before it starts to escalate. For example, Mad is obsessed with dinosaurs, so we start talking about T-rex, and triceratops etc and “looking” for them. You can also start using your BP cuff on his sometimes at home. You might be able to desensitize him to the feeling of pressure while in his more comfortable environment. Or you know, maybe none of this will work for him, since they are all so different. Never can tell :)


    marfmom Reply:

    Those are some great ideas! Thank you so much! :-)


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