I’ve been able to find lots of information on baby’s with Sandifer’s but not as much about our growing little ones.
My son is 21 months old & only nurses to sleep these days…so solid foods are his main source of nutrition.
He’s been through a lot, which you can find in my introduction post. information post
Recently, after almost 3 full months on the Prevacid 15 mg Solutabs 2x a day, he has started having “breakthrough symptoms” as his Pedi Gi (Dr.K) calls them.
They started a little over a week ago with some MINOR twitches.
Now, he is twitching almost constantly. He is refusing to eat anything but hot dogs (which he hadn’t even ever had until this week) and a few bites of rice chex or fruit (bananas, cherries, watermelon). He is crying in pain. During dinner last night, he covered his mouth and MOANED in pain and refused to take any more bites. (He feeds himself.)
His twitches are presenting in many different ways:
full body twitches where he spasms (looks like infantile spasms)
just his eyes, where they’ll dart to the side & glaze over
his whole face will scrunch up in an agonized look & he’ll shudder
he’ll throw his arms out to the sides, lock his jaw & “vibrate”
his head will drop to his shoulder, his leg will go one direction, and an opposite arm will go the other direction in a spasm
He’s also coughing during meals & he’s got a lot of gas, burps & toots.
We’ve gone back to no dairy, gluten, or soy for him, though I haven’t removed them from my diet. We are giving him 1 tsp (per his GI) of Mylanta every 4 hours to help with the pain.
According to Marci-kids he can have up to 1/2 a pill more of the Solutabs, so I’m going to ask his GI about adding that in first thing in the morning (right now he gets his pills 30 minutes before lunch & dinner).
His GI also recommended an endoscopy 3 months ago & we’re ready to go ahead with that.
My biggest concern is why did the medicine seem to stop working after only 3 months?
What can we do to help him not be in pain?
He has “the runs” now from so much Mylanta & his little bottom is raw from have liquid poo.
Anybody who has BTDT with an older child with Sandifer’s I’d love to hear from you & either connect on here or on Facebook.
Thanks!
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