Stidor and Obstructive Sleep Apnea Worse When Upright...: New Twist

Thursday, January 12, 2012

New Twist

When he was born, he had micrognathia, reflux, drooling, polyhydramnios in utero. Spoke to OBGYN that delivered my son. He thinks My child has Pierre Robin's Syndrome. Makes sense. Will have to see what ENT has to say...... Hhhmmmm.

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Stridor Baby - The Story

My child has stridor and obstructive sleep apnea that worsens when he sleeps in an upright position. He is also diagnosed with glossoptosis, laryngomalacia, arytenoid cartilage prolapse and laryngopharangeal reflux. He was on bi-pap at night until recently. His airway has finally gotten big enough to compensate with some of these issues when he is sleeping flat. However, he continues with stridor and obstructions when asleep in upright position. His condition is challenging because his sleep studies are so great when he has them (of coarse, because he is lying flat). Hence, gravity is not pulling on the arytenoids. When he is very exhausted, his stridor is significant when lying flat as well. When his nose is stuffed up, his tongue sucks up to the roof of his mouth while he is sleeping and completely obstructs his airway. I have tried to find an oral airway designed to help with this issue so that I don't have to hold his tongue down while he is sleeping during those times. Afrin will work for a few days here and there, but that is a poor long-term solution. I causes too many complications. I originally started making videos to convince the physicians that he was obstructing while sleeping upright. They didn't believe me because it is the opposite of what we learn in medical/nursing school. I don't think his problems will ever go away. I believe they developed in utero because I had significant polyhydramnios. I hope that parents will learn from me that even if your doctors don't believe you, follow your heart and do what it takes to show them the problem so your child doesn't suffer from long-term complications of sleep apnea. I also hope that one day we will find a physician that has treated a child like mine and know what to do to fix his arytenoids. I feel fortunate that I am a nurse and was so diligent with caring for him. I have been flipping him from side to side and repositioning his head and neck since the day he was born. I used to stay up all night. Now I only wake up 1-5 times (with good breathing) a night to reposition him to stop the stridor. I believe he would either be dead or have severe cardiac and respiratory complications if hadn't done this for 7 years. Unfortunately, so many parents out there don't realize that it is not normal for babies and children to snore. So many children suffer with ADHD, learning problems, breathing and heart issues, etc because of sleep apnea. It doesnt' have to be that way. There are doctors that will listen. He finally has a team of doctors that have been committed to managing his symptoms until his airway does grow big enough to compensate completely. Dr. Miriam Blum, Dr. Gary Montgomery and Dr. Elizabeth Shaw are angels to us. They have cared for and treated my son and taken the time to listen to us. Now he is growing and thriving. We are so grateful to them. I hope one day science will advance enough so that his arytenoids will be fixed and the laryngomalacia will be resolved. It's hard to always keep your child from falling asleep on a pillow, or in the car, or an grandma's lap. Until then, I will continue to search for answers and care for him like I always have so that he has a healthy long life.

Updates On His Diagnosis...

Stridor
Sturdor
Arytenoid Cartilage Prolapse
Laryngopharyngeal Malacia
Laryngopharyngeal Reflux
Hypotonia - worse with sleep
Glossoptosis

Pierre Robin Syndrome without Cleft Palate

Developed as he has gotten Older:

SVT

Bradycardia

PACs

Irregular Heart Rhythms

Junctional Rhythms

Facts:

Does not tolerate CPAP or BiPAP - obstructs airway

Complete obstructions in upright position

Age 11 - Stridor and obstructions have improved some, but still continue and are more silent since surgery, hence more obstructed.

Surgeries:

T&A

Tongue Base Reduction

Partial Arytenoidectomy

Septoplasty

What comes next:

Upper Palate Expansion

When my son is awake, you would never know that there is a problem. It is only when he falls asleep, especially in the upright position, that there is a problem. On one sleep study, he had 79 event per hour. The events included hypopneas, desaturations and obstructions. The bipap does help, but not always. And it does not stop his obstructions in an upright position.

Thursday, January 12, 2012

New Twist

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Thursday, January 12, 2012

New Twist

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