One of the most difficult things about chronic illness is the lack of answers, both about diagnosis and treatment. More frustrating? Differing opinions. Doctors, like people, view everything with their own eyes, so sometimes you can get two different answers from the same information. That’s what happened to us yesterday.
Rosie was diagnosed with Laryngomalacia a month ago when she had a sedated scope to figure out what was collapsing in her airway when she sleeps. Ehlers-Danlos syndrome patients have floppy airways. We needed to figure out if she’d be able to use a CPAP machine to keep her airway open or if she’d need surgery. The ENT that did the scope thought the problem was her airway closing around her larynx which is very rare. He referred us back to an ENT at our local children’s hospital.
Yesterday, we saw that ENT and he watched the video of the procedure. He does not think the primary problem is around her larynx. He thinks it’s with her tongue and epiglottis and what the first doctor viewed with the larynx is secondary. It’s a reaction to not being able to breathe and thinks that CPAP will work for Rosie. My teenager, of course, was frustrated. All of the years of no answers and now we finally get one and we’re told it’s wrong. I was a little relieved. She’s had trouble bouncing back from surgery with increased migraines. If we can avoid another procedure, it’s for the best.
Now, we’re left with another dilemma. It could take us 3-4 months to get back into the sleep lab at the children’s hospital and our neurologist has a lab at his practice. If we go there, he’ll be able to get her a CPAP much quicker. While the ENT thinks we need to meet with a sleep specialist and then have another study, we can’t wait months to treat a problem that we know she has if it potentially can help. This morning, I emailed the neurologist’s office to ask our next steps. They’ve already messaged back that they’ll get the pre-certification process started.
I’ve also reached out to a new chiropractor and we have that appointment on Friday. Since I didn’t want to take my teen through the entire pain management clinic process to get acupuncture, I found a caring woman who I feel will really help my teen. After surrounding her with doctors for years, I think it’s wise to find someone who has a vested interest and really wants to help her. I’m keeping my fingers crossed.
And finally, if you don’t think mother’s intuition counts for a lot, I demanded that they run blood work yesterday since Rosie was sluggish and her heart was racing. She’s severely anemic. Always trust your gut people.