Hello Docs ~ I was wondering if you have ever covered LaryngoMalacia? I have a 15 month old son who was diagnosed at three weeks of age, admitted to the Sacred Heart Childrens Hospital and underwent a supraglottoplasty. After his surgery he was sent home able to drink thickened liquid while hi...
Hello Docs ~ I was wondering if you have ever covered LaryngoMalacia? I have a 15 month old son who was diagnosed at three weeks of age, admitted to the Sacred Heart Childrens Hospital and underwent a supraglottoplasty. After his surgery he was sent home able to drink thickened liquid while his throat healed properly. He was also treated for reflux. Since three weeks old he has slept on a wedge in a relux sling to keep him at a safe poition.We were told to keep him upright always as an airway precaution. The few times he has been laid flat he has either turned blue aound the mouth or extremely pale faced. He does not like to lay on his back and will crawl over to pillows to lay on them. He also gets very agitated if he is laid down by the doctor or rolls onto his back as he can not roll back over on his own. A few days later we were back in the ER again. Chest xrays confirmed he was aspirating the thickened liquid and was admitted to have a florascopic swallow study done. After trying many different consistencies of formula an NG tube was inserted and our son was sent home NPO. Three months later that was switched to a G tube. In the past year he has come very far with learning to swallow some foods and knowing what is not safe for him (amazing), however he still can not drink and sometimes chokes on his saliva. We don't know if the Dysphalgia is due to the LarnygoMalacia or something else all together due to the lack of info and research. After many swallow studies were done by our speech therapist, the ENT wanted to take another look at his anatomy to see what was going on in our sons throat and did a scope procedure in the OR. The findings were that his epiglottis is in the wrong position and this is creating a 90 degree turn in his airway. If she were to correct this then he would loose the ability to eat the little bit of food he is able to and never drink. We then were given the chance to a 2nd opinion at Seattle Childrens and was told the same thing by them with the suggestion of having him seen by a nuerologist for an MRI. This has yet to happen as we were only in Seattle a few months ago and they have not sent the referral.
The ENT that my son sees says there are hundreds of babies out there born with LaryngoMalacia, however after months of trying to start a group and posting stuff on line I have only found one other mom out there with a child who is now nine and did not have the surgery that was recommended for our son she grew out of the stidor breathing around age two. Her case was not as severe as we were told without the surgery he would come home on sleep and oxygen monitors.
Please do a show on this subject to help the other parents out there that also want to help their children but are running out leads and options. Hopefully we can raise enough awareness to get some research done on LaryngoMalacia.