Home › Forums › Special Topics › Sandifer's Syndrome › Sandifers Syndrome
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February 10, 2006 at 3:28 pm #1301AnonymousInactive
Mandi! What a horrible experience for cole and your family. I watched the video, and it is heart breaking. Has he been seen by a ped. GI? Has there been an endoscopy? I hope he gets put on a PPI like prevacid or zegerid soon! Lots of info here. Glad you found this site! sarah
February 10, 2006 at 3:40 pm #1306AnonymousInactiveMandi! I can’t believe all that you and your son have gone through! What an awful experience. I watched the videos and looked at his site, and it makes me so sad that you have all suffered for so long. I really can’t believe that after looking at those videos, a medical professional could not see that your poor soon was trying to clear something from his throat/airway.
I really am mortified that your son was diagnosed with severe reflux so long ago, but that no one ever thought of Sandifer’s! How can that be? How was he diagnosed with his reflux? Was it through a scope or a PH probe? I really just find it so terrible that a doctor never suggested Sandifer’s before now at 4 years old. My daughter also has Sandifer’s which is sometimes controlled better than others. I have yet to see a medical professional who has taken us seriously regarding the Sandifer’s or the reflux. I am also in Canada- in Toronto. I often wonder if our health care system is a detriment to getting help for our children in Canada.
I am so glad that your son finally has a diagnosis, and that you can hopefully get some relief. How do they plan on helping him…it is my understanding that Sandifer’s is a pain response, so what do they plan on doing to control this for him. I admire your ingenuity and dedication in seeking answers for your son, as I have found that sometimes this can be very difficult to do. I only hope that things continue to improve for you all.
s&h’s mum2006-2-10 15:44:17
February 10, 2006 at 11:25 pm #1325hellbenntKeymasterhug to you, your son & your entire family!
No words can tell you how I feel after seeing your site! You have fought the fight!
March 1, 2006 at 12:07 pm #2754AnonymousInactiveThose videos look Just like my son when he was that age. My son had/has massive silent reflux. However, he did not make the retching sound with it (it was more of a gasping for air sound). My son looked more in pain and had more trouble swallowing it down. He would do that every 10 minutes or so all day long. Have you read/heard anything about Laryngomalacia? My son also had/has Laryngomalacia and Tracheomalacia – they cause serious problems with eating, reflux, and the ability to get over a common cold. However, doctors tend to “ignore” the ‘malacias’ because they usually resolve themselves by the time the child is 2 years old. I have posted some things aobut Laryngomalacia under the “respitory” topic on this forum, I think you’ll find it interesting. I’m not saying that your son doesn’t have sandifer’s I’m just telling you these these things all may be linked together. I’m not sure if my son has sandifer’s or not, my understanding was that it involved jerky seizures and he didn’t have that. He did however, twist and arch his body a lot – which I now know was from him trying to get an open airway to breath because the reflux comes up all the way to the larnyx and I believe he had trouble blocking the liquid from going down his trachea, that why he’d stop breathing for a bit when he’d reflux. Hope that helps you. Wow, I have no video of my son refluxing and that really brings me back and my son is only 2-and-a-half years old. By the way I wanted to mention that my son sleeps much better (and through the night!!) and I no longer hear/see him gulping/refluxing since I’ve put him on Prevacid in the AM and and H2 Blocker (pepcid ac) in the PM – instead of Prevacid twice a day. The h2 Blocker really helps him at night. I highly recommend it and wish I had known about the combo earlier.
March 1, 2006 at 1:47 pm #2765AnonymousInactiveMandi
Welcome to this site. After seeing the videos and reading ColeĀ“s story, i can barely write anything. Please let us know what tests they are doing, what meds they are putting him on etc and how he develops. We would all love to help. This is a wonderful site and hopefully we will be able to help you with our experience.
Cole is such a cute baby — i am praying that the worst is over and that you will finally have a healthy boy!
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