Musings of a Marfan Mom

Holy Tantrum, Batman!

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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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