Discussions By Condition: I cannot get a diagnosis.

1 yr old with severe dysphagia and aspiration please help!

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: loveryan1
  • July 26, 2009
  • 06:09 AM

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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  • Hi, this is the first blog I have found regarding a full term healthy child with feeding issues. My daughter has many of the same issues you are facing and we don't have an answer other then dysphagia, aspirations, hyper sensitive gag reflex, food refusal, failure to thrive & mild delays. I would love the opportunity to talk to you more about your experiences.Michele
    Anonymous 42789 Replies
    • October 3, 2009
    • 08:31 PM
    • 0
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  • Hi, this is the first blog I have found regarding a full term healthy child with feeding issues. My daughter has many of the same issues you are facing and we don't have an answer other then dysphagia, aspirations, hyper sensitive gag reflex, food refusal, failure to thrive & mild delays. I would love the opportunity to talk to you more about your experiences. Michele I haven't checked this in a while sorry i didn't write back sooner. Since I wrote last my daughter has seen nuerology and pulmonology. Her eval with nuerology showed she was "excellent" in their terms. Her eval with pulmonology showed that she had pneumonia again and they had to do a broncoscopy to make sure there was no solid food in her lungs that caused it and they were able to rule out any tears that may be causing her problems. She recovered in August from that and then last weeked suddenly got very sick again and turned out to have H1N1. They hospitalized her overnight at childrens because they thought she might have pneumonia again. She didn't so they released her and she is doing much better. They have put her on prevacid to treat her for reflux even thought we were told she didn't have it. They plan to do a repeat swallow study in Nov to see if the prevacid has helped. They also plan on having her see a Metabolic Geneticist. I hope all is well with your daughter.
    loveryan1 1 Replies
    • October 10, 2009
    • 04:10 AM
    • 0
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