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My doughter is two. Few months ago, she had G-tube placed because of aspirations. She cannot have anything by mouth, not even some water. She is otherwise healthy toddler. Does anybody has tha same or similar child. What can we expect? Is there any MD who specializes in aspiration issues?
You should see a GI for the aspiration issues, and possibly a pulmonologist (lung doctor) as well because aspiration can cause lung damage and breathing problems, even apnea. Between the two they should be able to effectively manage your daughters problem. Swallow studies can help show why she is aspirating, and then her docs can suggest appropriate therapy to help resolve the problem. My son ended up having a Nissen Fundoplication to stop his reflux and aspiration. This surgery prevents anything from coming back up into the esophagus, so it eliminates the possibility of aspiration. What goes down into the belly stays there. Surgery may seem extreme, but aspiration can be a serious problem and if nothing else helps, the Nissen can be a lifesaver. Placing the g tube will help, but even though she's not swallowing her food doesn't mean she may not still aspirate it. Best of luck to you and your daughter, I hope this info helps some.
A speech pathologist can also help with dysphagia.I'm not real sure what they do for little ones,if you like I can can ask mine for advice for you.I know she has a 3 yr old patient she works with.
Hi. I happen to have the exact same 2 year old. He is unable to have anything by mouth because he will choke and aspirate as well. They put in a GTube about 5 months ago and he is finally gaining weight. They also did a Nissen Fundo which only helped the feeds to not come back up. If he swallows anything including a significant amount of saliva he will choke and he will aspirate if he gets something in his mouth. His problem is not with swallowing though. On the swallow studies he can swallow perfectly. His muscles in his esophagus do not contract to move the food to his stomach. Therefore, food backs up and chokes him and then he aspirates. He has been hospitalized several times with aspiration pneumonia so we have to be very careful. The doctors have done every test known to man and can not tell us why this is happening.
This is the first I have heard of another child like him.....
I'm on a mission now to get him on soy free formula........
Our son went to a speech pathologist who specialized in a procedure called Vital Stimulation which retaught him to swallow more efficiently. He also was aspirating his food and coughing alot during eating until he had a series of Vital Stim treatments. They did have to be repeated later once so far, but were covered by Medicaid and were done outpatient at a rehab facility where the speech pathologist worked. She mainly used the technique with the elderly with aspiration issues, but they were very effective on our son when he was in his teens. Perhaps your child is too young just now, but maybe it's worth asking about. Not every doctor knows about this method, but it really does work for many people. Also Reglan is a good drug for helping regulate swallowing so it is done properly. Hope this helps someone else.
Marilyn
My daughter also just turned two and has dysphagia, or difficulty swallowing food, liquids, and even saliva. We have no idea why she is the way she is either but when she was born, a preemie, she wAsn't able to suck either. He has been through lots of diagnostic testing from genetics to ct scans of jaw joints (tmjs) and swAllow studies. We are fortunate that she hasn't aspirated and her swallowing is getting better. We are working on thick baby foods but most of her nutrution is by gtube (pediasure). It is very frustrating not to hve answers or a direction other than working on eating in OT, oromotor stuff in speech, and eating several times a day. Do any of your kids have any other delays? Were they preemies?
Oh and my daughter takes reglan before every meal by gtube and Zantac twice a day and had a nissen fundo and mic-key placed when she was 2.5 months old.
My guy has no gag or swallow reflex..but really does swallow cause he is full of air, but has never passed a swallow study. !00% Gtube fed, full wrap nissen at 4 lbs.
14 years of intensive OT and and we are moving on with goals...I have orders for nothing orally, but he wants oral water and gets it himself and he hasn't harmed himself yet with drinking it.
My guys has huge delays...non verbal, low tone cp but signs well and walks. I wished I has more information on vagus nerve stimulation....are they coaching you on that?
Oh..and we did two "spit reduction" surgeries and he was the first kid at Stanford Children's to do botox for spit control (too dry). Still needs suctioning when he crys.
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