#Autism, Epilepsy, Dysautonomia and new problems

 

For those of you that have been following my blog for a little while, you are aware of Gavin’s ongoing health situation. His list of health issues continues to grow steadily with the latest official diagnosis being epilepsy. Dysautonomia is pending diagnosis but that’s more of a technicality at this point.

Last week we had a scare in regards to his current antibody levels. Oh yeah, Gavin also has common variable immunodeficiency as well. Thankfully that turned out to be somewhat of a false alarm, although his IVIG dosage is going to increase from 15grams to 20 grams beginning with his next infusion.

I swear I’m not looking for things to go wrong. Gavin has such a complex and ever changing health related landscape that something new is always rearing it’s ugly head. It seems like there is always something to worry about.



Today is no different. Lizze and I noticed that Gavin seems to be choking when he eats or drinks. We had sorta assumed that it was because he literally inhales whatever is put in front of him. However, after watching him a bit closer today, we realized that it has nothing to do with how fast or slow he eats or drinks. After focusing on this a bit today, Lizze and I remember something that was said during Gavin’s last hospital stay, about a month or so ago.

One of the specialists expressed concern over Gavin’s ability to swallow.

You may recall that one of the things that has happened to Gavin over the past year or so, is a decreased ability to move his tongue. He can no longer lick something off his upper lip or even touch this tongue to his nose. This is a newer symptom.

I hadn’t occurred to us just how important his tongue is to swallowing his food and we are suspecting this is responsible for his choking or gagging during meal times.

We will be calling the neurologist in the morning to let him know about this. My guess is that he will need a swallow study to determine if his ability to safely eat and drink is compromised in any way. That call will be among the 4 or 5 other Gavin related phone calls I have to make in the morning.

It’s going to be one of those weeks.

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As an Autism parent, do you think you've become so used to the high levels of stress in your daily life that you've normalized it or no longer realize it's there?


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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  

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