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1yr old dysphagia/aspiration help!
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Jade0621 posted:
My daughter was born at 37 weeks without any complications. She was diagnosed with reflux at 2 weeks and was put on Reglan and Zantac. We started noticing that she frequently chocked while drinking mainly from the bottle and sometimes while breastfeeding. She got so bad that a few times her eyes would begin to glaze over and almost roll back in her head while choking. We spoke to her Dr. and he ordered a swallow study. At about 2 months old she was put on honey thick liquids using hydra aid or simply thick thickners, because the study showed deep penetration, pooling, and residue. She did well on the thickner but her reflux got worse after about a month. At about 5 months old they did a repeat study and she showed deep penetration, pooling and residue on the honey thick and she had reflux going into her nasal passage during the study. She was then put on pudding thick liquids. Her reflux seemed to get better almost right away and the chocking on liquids has almost stopped. She still chokes on the liquid medications she takes for refulx. At about 9 months they did another study and she still showed deep penetration, pooling and residue on the pudding thick so she was left on that thickness and we were told to try getting her into oral motor therapy. At about 11 months she started therapy, around the same time she had choked on her reflux meds again this time worse then normal and i thought she may have aspirated it. About 1 1/2 weeks later she was diagnosed with aspirated pnemonia. After she recovered from the pnemonia the speech therapist began decreasing the thickness of liquids until she got to drinking between a nectar and honey thick with a straw and honey thick in a bottle with little to no choking. At 12 months she had her latest swallow study and they began the study at a honey thick and she had deep penetraion, pooling, residue and aspirated a small amount. Then they did yogurt thick and she also had deep penetraion, pooling, residue and aspirated. They switched back to pudding thick and she aspirated while using a bottle, but did better with a straw and sippy cup, still showing signs of penetration and pooling. During the one study she aspirated four different times. She also showed that all four times she never coughed or reacted to the aspiration so they said she was a silent aspirator. She had a PH probe down to see how severe her refulx is and the results showed it was no worse than an average person and she is being taken off of her reflux meds. The dr.s and her speech therapist seem to be a little lost because they all tell me they have never had a child that is normal in every aspect except for her swallowing. They said she has a delayed swallow and that she doesn't start swallowing until the liquid is sitting on top of her epaglotus causing her to aspirate. The keep telling me that she just needs the oral therapy and she will get better, but it seems to be getting worse. I don't know if there is a different type of dr that deals with dysphagia in children or where else to begin trying to get help. She has an appt. 2 months from now with a pulmonologist at children's hospital and another in one month with a neurologist at childrens hospital. Tonight I had to take her to the ER because we think she aspirated a solid which she hasn't done before that I know of. They said we have to watch her close to see if she gets sick and then they will have to go in and remove the food from her lung. If anyone can give me advice on dr.s, dysphagia, delayed swallow, silent aspiration, damage other then pnemonia that aspiration can cause or anything else that me help me get my daughter on the way to drinking regular liquids please help. Thanks
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DAB1975 responded:
My first question is where do you live? I find that local docs tend to be good with routine things, but when you have something unusual like this you are really better off going to someone affiliated with a LARGE teaching hospital. And I mean this for anyone treating your child for this unusual problem including the speech therapist. You can also consider a developmental pediatrician, and definitely a pediatric neurologist.

It does sound like she will progress with speech therapy, but it is a long process. I commend you for wanting to get answers, aspiration and dysphagia is a serious problem, and aspiration pneumonia can be dangerous.

I would be calling the pulmonologist's and the neurologist's office every day to see if there is a cancellation, and they can get you in. Heck, show up a few times even. See if your pedi can call and get you in sooner, bec 8 weeks is a really long time. Tell the people at the pulmonologist's and the neurologist's office that she is silently aspirating and having aspiration pneumonia and make sure they know you are not just coming in for a simple asthma eval. Sometimes if they know it is serious they will try to get you in sooner. Same with the neurologist.

Good luck.
 
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patsonln responded:
My grandson is having problems swallowing liquids. No problems at all swallowing solids. He holds his head back and lets the liquids slowly go down his throat as he sound like he is gurgleing and its almost like he is holding his breath or cannot breathe while he is trying to drink., He strangles if he drinks like a normal swallow. I have never seen anything like it. He is always thirsty. He really doesn't urinate much. My daughter has had her first appoint ment at childrens hospital, they seem to think its gerds but he only does it on anything liquidy. Apples sauce, yogurt, milk. I am very concerned, although he seems like a very healthy and happy child. He constantly wants to eat. Childrens hospital will be running test on the 21st, so we will find out more. You are the only other person that I have found that has the similar problem. Thanks
 
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mom2seven responded:
My son is experiencing the exact symptoms as your daughter, he is now 1yo and I am just wondering how you guys made out. It is very little informatuon available on aspirating pneumonia, but my boy has been hospitalized 3times now for it. Hopeful for any answers or advice you can offer. Thank you


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