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Everything posted by Cmama

  1. Yeah- he's actually been on reflux meds. his entire life (since 1 years old anyway). He's had many scopes, ph studies throughout the years. At some points, there was evidence of reflux at other times it looked perfect. They have taken him off 2 times. The GI at Mayo Clinic does not think it's reflux which is interesting. The previous GI also feel this way. So we just took him off again in May 2020. They scoped him the day after an episode in January 2020- esophagus and lungs- just wondering what it looked like in there- and it was perfect. No signs of irritation or inflamation. So weird. It seems to tighten just be at his larynx area- the trigger is the mystery.
  2. Thanks for your comments and thoughts. He has gone through allergy texting at a few times in his life and is allergic to absolutely nothing. Although, when he has his episodes it looks almost like anaphylaxis and Recemic Epi does tend to open him up. He's also had a sleep study and other than being wiggly- it's normal. They did the Tilt Table test to diagnose the POTS at Mayo Clinic- his heart rate jumped from 60 to 104 when being tilted at 70 degrees- so met that criteria. It answered the questions of why when he stands up his legs and arms get discolored and the occasional fainting, dizziness and frequent nausea that he experiences. Water intake and salt has been very helpful for him since we have learned about POTS for all of these things. He's feeling much better. But, at Mayo- he was assessed by Neuro, Pulm, GI, Immunologist, and ENT. The ENT explained that she believes the visceral nervous system his over-sensitive (which she thinks is tied to POTS possibly) and may be the cause of a Laryngospasm for whatever reason. As a child he gaged all the time- if he saw someone chew gum, eat certain things, or in sports when kids wore mouth guards. He'd run our the gym to vomit- that was not awesome. He also could not eat certain things. He's had to work through that issue- and had really done really well- a victory that he now actually chew gum. His lungs have always been good- it's just this throat that will suddenly close and it's always tied to some kind of cold symptom- but he can also have colds and not have an episode.
  3. I'm a new member on this forum and I can not tell you all how grateful I am to have found this thread. I'm a mom of a really great 16 year old boy- I love this kid! But, he's gone through a lot in his life that was never understood but began at 10 weeks old. His first year of life, we were in the ER about 1 time a month with "severe croup." I have 3 kids and my others had croup too, but nothing like his. We often dealt with his airway closing and when he was 8 y/o we had 2 calls to 911 as he was turning blue. This happened again with needing to call 911 again in 7th grade (he lost consciousness) and this past Jan. 2020. He most often opens up a bit with Racemic Epinephrine which were have at home (inhaled with nebulizer) and we also have an Epi Pen for backup, if it's not enough. He's had to be transported from one hospital to another because they could not get him to open up enough as well. He's a bit old for "croup." He's nearly 6'3" and 205 lbs., so they began to call it "Laryngeal spasm." He was on reflux meds. his whole life- thinking maybe that was trigger, had scopes multiple times to rule out structural issues and tonsils out. He would also have dizzy spells, faint, nausea, strange coloring on limbs when he'd stand up. Most people though would never know he had any health issues at all- he's athletic, but when problems hit, they hit hard. We flew out to Mayo Clinic in MN this March (before the country shut down for the pandemic) and met with a team of doctors- learned he has POTS (discovered this by chance when talking about the non-airway issues). Now, they are thinking the airway is connected to POTS as well. My biggest fear was that if his throat closed he'd die- but the Dr. said- if he passes out his body should take over as it will naturally relax. For me, the greatest comfort was hearing from the doctor that his body would likely kick in to relax his airway if he passes out. I've never met anyone who had anything similar. My goal is to get to the point where he can go away for college safely- these emergency situations are very scary for him and also for us as his parents! They only have happened in the middle of the night and when he wakes us- it has often escalated to an emergency in about 10 minutes.
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