The Following is Evie’s Sleep Treatment Story as Told By Her Mom, Jen Alge:
Read about new research that links sleep issues with cognitive, memory, language, and behavior issues HERE.
I could write a book about this. Evie’s had 7 sleep studies. Her first was at 11 months, because they were trying to rule out pulmonary pressure issues before doing heart surgery. She had mild apnea then.
We did another sleep study before her first set of tubes and they found she had severe sleep apnea. They put tubes in and took the adenoids out. She still had severe apnea. They then did the tonsils along with a tear duct probe and another set of tubes. Then her apnea was moderate so the tonsils helped a bit.
Then we did a simi MRI to get a better read on her airway. That helped the docs a ton. I highly recommend that procedure. But that showed us just how obstructed her airway is so that’s when we started the CPAP (Central Positive Air Pressure). Due to her tiny facial structure and age (she started this when she was 4) it took a while to find the right mask and pressure that she would tolerate.
Doing a sleep study to titrate the machine was the most challenging sleep study- keeping a canula in with a CPAP is rough. So they gave her ambien to get that result. Then after several months of her only wearing the CPAP for 2 hours we did another sleep study and this time with a time-released melatonin. That did the trick.
So Evie takes a pill like a champ every night along with her nasal steroid and allergy meds to open her airway. After we got her pressure where it works best and a full face mask, she wears her CPAP an average of 7 hours a night. Now, she’s on a pressure of 11, and the full face mask isn’t the best option because when she moves the seal breaks pretty easy. So we’re not at the finish line yet. But the docs are happy with her use and they want to kick us out of the upper airway clinic.
I’m holding on because, yes, she does wear it on average 7 hours a night, but that’s only because I’m in her room 5-8 times a night at least putting the mask back on. She lets me put it back on, but man is this lack of sleep going to get old someday soon. And I’ve definitely considered other options like orthodontic pieces and the surgeries they really wanted to do when she wasn’t wearing her CPAP more than 2 hours.
Those surgeries are 3 in total: 1. Cutting the back of her tongue and pulling out some tissue. 2. Cutting away her lingual tonsils at the back of her throat (this is a risky procedure with a long recovery due to the risk of her throat swelling and closing up- lots of steroids) 3. The insertion of a screw under her chin with a string tied to her tongue to keep it forward. Evie’s problem is not the tongue, the throat or the width or length of her mouth- it is all three. So only all three procedures would solve it. Oh and all three procedures only have a 60% success rate so she’ll likely still need a CPAP.
I’ve notice no behavior changes since the treatment. Evie’s always been a smarty pants and she talks all day long so I can’t credit the CPAP for any changes there. I will say she is getting more air and isn’t gasping for breath or snoring with the cpap on so that’s a relief. The behavior changes might be more long term given her age.