People often ask about Gannon. He’s my 3 year old son who has a diagnosis of hypermobility spectrum disorder (HSD), pending a diagnosis of hypermobile Ehlers Danlos syndrome, a defect in the connective tissue/collagen that effects the skin, ligaments and joints, blood vessels and internal organs. From the day Gannon was born, I could argue even before he was born, there’s always been some kind of medical issue we’ve been dealing with Gannon.
It started with undescended testicles at birth, followed by a big swollen belly, followed by a few misdiagnosis, then started the painful defication, then came the vomiting, then it was difficulty swallowing/choking, then it was swallowing too much air, then it was delayed mile stones, the list goes on.
While Gannon has seen more specialists, had more surgeries and procedures than most adults, Gannon leads a fairly normal life with a few exceptions. I wanted to share how HSD effects our daily lives.
Here’s a glimpse into a week with Gannon:
Day 1: Down to Cedar Rapids to the Hangar Clinic to get Gannon fitted for SMOs. These will help stabilize Gannon’s ankles and knees. Gannon’s ankles often collapse in on themselves and is very knock kneed. Hopefully these will help stabilize his legs and he won’t trip and fall as often as he does. Gannon got to pick out the colors and designs of his braces. We have always had such a wonderful experience with Hangar clinic.
Day 2: We hear back from Hangar clinic and we will end up paying $1,200 out of pocket for Gannon’s braces. They are only covered after we meet our $4,000 family deductible. I research shoes that will best fit SMOs, all pretty expensive and not super cute starting at $50 per pair.
Day 3: Gannon gets bloody noses pretty easily. Carver hits him in the face during rough play at bedtime and soon enough the sheets, carpet, pillows, and blankets are covered before we can get it under control. Easy bruising and bleeding are a very common symptoms of EDS. This follows an incident he had at the park last week with my mom where she almost considered taking him to the ER because of how badly his nose was bleeding.
Day 4: More appointment coordination, this time with a specialty we haven’t seen yet who can hopefully give us some insight on Gannon’s joint stability, Gannon’s torticollis (crooked neck), and his frequent falls. They can fit us in the closer outreach clinic next week! This NEVER happens, I’ll take it as a win. Over nap time Gannon snores and coughs and keeps me awake during my pre-night shift nap. He’s going to have a sleep study here before the year is over to see if he needs to get his tonsils out to help with his breathing at night.
Day 5: I’m woken to a sharp barky cough – ah yes, our monthly bout of croup/stridor! It’s pretty bad this morning, I can hear the tightness when he breathes (stridor). The clinic doesn’t open for another 20 minutes or so, I ask him if it is hard to breathe and he says no. Whew, I scramble downstairs to see if I can find a dose of our PRN steroids and thankfully, there is ONE dose left! That saves us at least one clinic visit for the day. I get a video of the stridor to show them at our sleep study/ENT visit in Iowa City in October.
There’s a ton of videos and pictures on my phone to “prove” Gannon’s symptoms when we meet with specialists. I’ll share the clip here so you can see what I mean – this happens on a pretty regular basis. we’ve gone through 3 doses of steroids since May so it’s a pretty regular occurrence. This is common in kids with EDS/HSD because his upper airway is made of connective tissue. This is something we will explore more when he sees ENT at his sleep study in October.
Day 6: Driving in the car, I check on Gannon in the back seat and find his leg like this: A pretty classic sign of hyper-mobility are arms and legs that bend far beyond what they are supposed to as the defect in the collagen causes “extra stretchy” joints. Gannon seems extra clumsy today, he falls and trips several times a day usually but some days are worse than others.
So when people say “how is Gannon doing?” He’s doing GREAT! He is currently pain free, he is happy, healthy and HILARIOUS. He always has us cracking up! But hyper-mobility spectrum disorder does effect his life on a pretty regular basis.
That’s all I have for today! Thanks for reading!
Check out my latest posts:
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- Times Have Changed – Post Partum Edition
- A Week in the Life with Hyper-mobility Spectrum Disorder….
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