Gannon Update – Summer 2022

I wanted to give a little update on Gannon. All is well, he’s growing and happy and healthy but we are seeking some expert consultation on a few things.

For the past year, Gannon has grown and blossomed in leaps and bounds. All of his tummy issues have resolved, he’s fully potty trained, we kind of just accepted Gannon for all the quirks he has. There are a few things that remain that we’d like some clarity on. Gannon will have a few specialty appointments coming up.

Gannon still walks on the inside of his ankles and it causes hindfoot valgus. This is very common with kids who are on the hypermobility spectrum. The ligaments and tendons that connect his joints and bones are very loose and flexible causing several problems. He will need braces on his ankles again like he had when he was just 1-2 years old. We will be taking him down to Cedar Rapids to the Hanger Orthotics clinic to be fitted for braces again here soon. So begins the hunt for shoes that will accommodate his orthotics again.

We also reached back out to genetics at the University of Iowa. They are the ones who can evaluate and officially diagnose him with Hypermobile Ehlers Danlos Syndrome (HEDS) or hypermobility spectrum disorder. They are also apart of the connective tissue disorder clinic, all in the same group of disorders. Again, Gannon has been formally ruled out for genetically detectable forms of EDS but cannot be diagnosed with hypermobile EDS or even properly assessed with it until he’s over age 3. He’ll be close to 4 at the time of the appointment. They can also resubmit his genes to be evaluated again to see if there are any new discoveries.

Gannon has also been snoring A LOT and coughing during his sleep. His snoring gets better when I roll him on his side which means he may have sleep apnea. He is being referred for a sleep study at the University of Iowa. We are also going to test out some allergy medication to see if that helps. If a doctor suspects a kiddo needs their tonsils out, it has to be proven by a sleep study or recurrent strep throat or it won’t be paid by insurance, this was news to me.

Gannon also has been having random frequent bouts of croup. We have an “as needed” dose of steroids at the pharmacy because he gets upper airway swelling/tight coughing about once a month. So far we’ve stayed out of the ER since that scary episode last March, we are wondering if this has to do with allergies or with his snoring? It’s also common in EDS kids to have issues with their larynx? We will just have to see what the sleep study looks like.

We are also following up with the Center for Disability and Development who initially evaluated and got the ball rolling on several referrals at the U of I including cardiology and urology and genetics. Our doctor at CDD actually has HEDS so she’s an awesome resource. We need to ask her about Gannon’s neck, he has torticollis and he’s unable to touch his left ear to his left shoulder. We also think this is an EDS thing so maybe there’s nothing we can do about it, either way she will know what to do. We will follow up with her in October.

SO lots and lots of appointments and referrals: Orthotics, CDD, Genetics, Sleep Study, follow up with Urology, none are very urgent but I’m looking forward to maybe finding another piece of Gannon’s puzzle. We met with Gannon’s PCP today and he assured me that I’m not crazy, there’s just something just different about Gannon, we’ve both seen it since the day he was born. He’s been so wonderful sending all of these referrals and answering my many, many questions.

That’s our Gannon Joseph! (or as he told the nurse today, Gannon Free-man Jo!)

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1 Comment

  1. Hedy
    July 2, 2022 / 1:04 pm

    Sorry he has these issues but you are on top of everything so Iā€™m sure it will work out OK eventually. I will say one thing: he sure is one sweet looking little boy!

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