Grace went in for her swallow study. It was very interesting to watch. The OT in charge was incredibly nice, and she was so willing to think on her feet when Grace couldn’t eat the barium cookie. We didn’t know if it was gluten-free. An aside: A barium cookie? GROSS!!!
The big issue with Grace’s swallowing difficulties is the Abilify. Grace takes 15 mg of Abilify per day to control her psychosis, and this drug works really well for her when combined with Lithium. It’s the best combination we’ve found. One side effect, however, of Abilify is swallowing difficulties so Dr. Awesome was on high alert when I observed that Grace was losing weight due to her inability to swallow her food.
What Nancy the OT observed during the swallow study is that Grace’s swallowing “mechanism” works. What doesn’t work well is her tongue. When I think of swallowing, I usually always think of my throat. You know, the action of swallowing. I don’t really think about my tongue, but swallowing food begins in the mouth with the act of the tongue pushing the food down into the back of the throat. This was Grace’s problem. Her tongue has low tone. Plus, it was noted that she has a high palate. Her tongue is not able to reach the palate, make contact, and complete the action of pushing the food into the esophagus. It was noted that she chews her food for a bit too long, and she attempts to swallow her food twice before being able to successfully do this. There is food left on her tongue and palate after the initial swallow. Why is this important?
It’s making a stronger case for Ehlers-Danlos. One of the markers for EDS is a high palate as well as hypotonia, low muscle tone. I’ve been reading about EDS and hypotonia. It’s funny because I’ve not seen anyone mention a hypotonic tongue, but that’s possible. (Hypotonic Tongue…that sounds like some kind of band name.)
So, why write post this? Well, when you have a child who presents with something as complex as schizoaffective disorder-bipolar type, the first thing a doctor or clinician will tell the child and the parent when the child says, “I can’t swallow” is that the child is most likely anxious. Not being able to swallow one’s food appears to be a somatic complaint. Even adults get anxious and don’t want to eat. Children often don’t have the self-awareness to describe how they feel in their bodies so they’ll complain of tummy aches, headaches, and weird sensations in their throats particularly if they are anxious. Anxiety disorders are often co-morbid with bipolar and schizophrenia spectrum disorders because, well shit, wouldn’t you be anxious if you were a kid with such a big diagnosis? All the adults in your world are most likely anxious now because of you.
The problem is that the side effects of the medications used to treat these Axis I disorders have some nasty side effects like tremors and tics…and swallowing difficulties. So, even if a child expresses themselves and their issues through somatic complaints, it’s important to pay attention. The other problem is that a child could actually have an unrelated health problem that is masked by the symptoms of her mental health problems. When a child is psychotic, manic, clinically depressed, or in a mixed state, hypotonia and swallowing problems do not make the Top Ten. When that child is stable, then you can go back to wondering why your kid has always walked like Shaggy from “Scooby-Doo”. Here is something to think about: if your child has early-onset schizophrenia or a schizophrenia spectrum disorder, then pay attention to other neurological issues and family history. Schizophrenia is a genetic, neuropsychiatric disease, and it can be tied to 22q11 deletions on the human genome. Strangely enough, studies are beginning to find that there is a genetic link between schizophrenia and autism, and that is certainly true in our family. I have a daughter with autism and another with a schizophrenia spectrum disorder.
All this is to say, don’t dismiss somatic complaints in your child. Look back on their history and behaviors. Grace used to chew her food and spit it out when she was very little. I thought she was just being a kid. Then, I looked back over my own childhood. I was the same way. I, too, had a very hard time swallowing certain foods. During the swallow study, Nancy the OT asked if she could look in my mouth to check out my palate. I told her she could, but she would see the same thing. I know I have a high palate. She did indeed check, and she nodded: “Yep. Your mouth looks the same.” I’m not hypotonic, but Grace’s joint hypermobility problems are similar to mine. Her shoulders aren’t dislocating randomly, but the kid is like Gumby. That was me as a kid. It’s why my swimming coach loved me. Swimming is definitely a sport that exploits hypermobility. If you’ve ever watched the Olympic swimmers warm up their shoulders before a race while watching the Olympics, note that their weird flexibility and strange floppiness is not normal. They will all end up in an orthopedist’s office someday for “blown shoulders”. And, when the orthopedist looks at their x-rays with that crinkled brow that says, “WTF,” they’ll need only say, “I used to swim competitively.” The orthopedist will then say, “Oooooh! That explains it. Well, no more swimming for you. I’m sending you to Helga, our shoulder PT. Have fun and work hard.” I digress…
You, your child, or a child you know might present with many symptoms, and you might be seeing a specialist or many specialists. Perhaps you feel that something is still not being addressed. You feel it in your bones. Go with your gut on that. Do your research. Find a doctor who will collaborate and listen to you. Dr. Awesome has been very helpful to us. She has been prodding us on to get to the bottom of what is absolutely not psychiatric, and, most important, she believes Grace. She doesn’t just tell her that it’s all in her head. Also, just because it’s rare doesn’t mean it’s impossible. EDS is rare, but I may be the carrier of it. So, while Grace is being worked up for it, I have to be worked up for it. Get in there and do your due diligence.
Lastly, don’t give up. Things get better. They do. So, keep going, and…don’t forget to take care of yourself.