Friday, August 19, 2011

Little Surfer Update

Mikan catching a sand wave

Diluting Mikan's high-calorie Pediasure seems to have helped curb his gagging. He still coughs on secretions and doesn't eat much of anything, but at least he has stopped the wretching. I took him to see a pediatric GI doc this week who said that the difficulty eating is probably one of three things:

1) a stricture (narrowing of the esophagus) that leads to discomfort swallowing
2) continual reflux because his nissen wrap has come loose
3) a hypersensitive pharynx which is common with children who have neurolgical impairments like cerebral palsy.

He thinks the most likely cause is the hypersensitive pharynx, which will only improve with therapy and time; however, we are taking him to get an upper endoscopy done next week to rule out the other two possibilities.

I have also heard that ataxia is closely associated with feeding difficulties, so we are looking into seeing his neurologist soon and possibly sending him to an intensive feeding therapy clinic to discuss how else we can provide a more successful feeding environment for him.

Coming up in the next few weeks is another appointment with his developmental pediatrician and the psychologist she works with who will evaluate whether Mikan's continued delays will place him somewhere on the Autism Spectrum. John and I are encouraged by his continued progress despite persistent delays and doubt any diagnosis will be in the moderate-severe range if he gets one. We are uncomfortable with labeling him this early, but if a label provides him with more services he needs, then we are open to it.

Today is Mikan's first day back at school. Pictures to come. Hopefully without tears.

1 comment:

DevonLeah said...

Interested in the findings of the endoscopy. Not sure if you read, but Camden's nissen is too tight. Been a nightmare over here. Also, for some time a milk allergy had him retching/gagging horribly. (this was when we had a loose nissen) But, not sure if youve had an allergy blood panel ran, but those allergies can make people so ill! SOrry if Im saying things youve already known, just thought Id share ;o)