I wanted to post this email I received today. Someone I have never met, came upon Annabel's blog through another little girl with Trisomy 18 who we have met at conference. She read Annabel's post and was struck as she said by the similarities. Internet certainly has its evils, but in this case it may hold huge answers. I have deleted the names because I haven't asked her to post her email on my blog. I did ask her if I could print this out and forward/fax to our drs. She said that I surely could. If any of this could be the same issues that Annabel is experiencing, then maybe we could get some relief for her (and myself concerning my stress level). have had other suggestions and I totally follow up on them. Today we had her tonsils checked and the ENT (not pediatric) was sure it was not her tonsils. He said actually they are so small, almost like they have been removed. His comment was that it didn't look obstuctive, but more consistant with her low muscle tone there in her throat. But he agreed she needed a sleep study and that it should be done in Houston, not here at home.
Again, I am so thankful for ALL of my internet friends, some I have met more I have not. Annabel overall had an ok day and for this I am grateful!
I read your blog post this morning. I got to your site via ---- blog, where ----- posted about Anabel’s downturn in health. I hope you don’t mind me emailing you directly. I wanted to tell you that the symptoms that you are seeing is very similar to what we saw with our daughter, ------ (T18) a couple of summers ago. I can relate to your frustration (and your fears) and I wanted to reach out to you.
After reading your post, my first question was: did they tell you that the vessels in the lungs might be spasming due to the apnea? Did they do a blood gas test? Did they put her on oxygen for about 10 min to see if it even brings her sats back up?
Here’s our experience:
R______started desat for no reason, she did not have a cold. It was the middle of the summer. And her sats were in suddenly in the 70’s. She doesn’t use oxygen at home, and we had a suspicion of apnea (both kinds). We also had been using to decongestants to control the secretions, and were having some success. She also uses pulmacort daily, and albuterol as needed. Finally, after 4 months of waiting we got in to see the pulmonologist at our local childrens hospital (only 50 miles away) and he spent a whole afternoon with us. What he suspected, because her sats had dropped suddenly, and that is not typical for a pulmonary hypertension patient – they usually drop slowly over a period of years – was that the vessels in the lungs were spasming due to the apnea, and that he had some patients who had success using a CPAP and turning that around. We eventually got the sleep study done, and got a CPAP, and then we saw her sats begin to improve. Getting her to use the CPAP all night is a whole new battle, but we keep at it.
We found that R_____has Reactive Airway Disorder, a form of Asthma that can last for days. Usually triggered by the secretions, or any allergens, and now we keep her on a decongestant (pediacare 0TC) and Loratidine, to keep these spells at bay. She would develop rather quickly a cough, and you could tell she was laboring to breath. Sometimes the albuterol treatments would not give her relief. And we would have to add an oral steriod burst. Does this sound familiar? And then poof, symptoms gone. For a couple of days.
I hope that this helps. I was really struck by how similar your description of Anabel’s episodes were to R______. If you have time, I’d love to hear back from you.