Discussions By Condition: Ears, Nose, Mouth & Throat conditions

1 yr old with severe dysphagia and aspiration please help!

  • Posted By: loveryan1
  • July 26, 2009
  • 06:14 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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  • Please take my advise. I hope you are still checking since I realize this was posted several months ago. First and foremost, you have a very strong and brave little girl! She is actually pretty healthy if she has endured all of this since birth w/ only one incidence of aspiration pneumonia!! Now, pls search for a website for "VitalStim" therapy. It is neuromuscular electrical stimulation that targets the muscles of the swallowing mechanism which strengthening. See, your child apparently has oral dysphagia but more importantly right now, she also has pharyngeal and esophageal dysphagia!!!!!!!!! The VitalStim website will list therapists in hour area who are trained and certified in this modality. I have witnessed it do AWESOME things!! Your therapy plan would be most effective if it were comprehensive to include oral-motor exercises, pharyngeal/laryngeal ex, feeding/swallowing therapy, compensatory swallowing strategies to increase safety while eating/drinking, possible positioning strategies, possible modified utensils/cups/spouts/straws, etc. Why are you still working on bottle when she's not safe w/it now and u want her to use a cup anyway? Straw training can be very hard! Now, I am sorry to say that many dr's do not understand aspiration or dysphagia and most do not know that there is therapy available that can help or possibly even remedy this. That includes pulmonoligists and neurologists! Next, your therapist took a huge risk advancing diet without a swallow study. There is a reason it is called " silent aspiration". There are NO overt signs of adpiration. Yes, sometimes there are some signs to look for, but you will never hear coughing and choking!! Your child should have begun therapy in the first few weeks of life when aspiration was first noted. Sorry this didn't happen. Pls tell me that you are using a GI doc. They need to be sure no surgery needs to be done, possibly stopping the reflux. The ph probe does not stand alone. Now, you have visited the children's hospital. So I am sure that those guys toldyou that there are children who only have swallowing issues! This is more reason for them to continue to search for the physiological reason for what is happening. This is not just a general developmental delay if all else us ok across the board. BUT pls be aware that your child IS AT RISK for speec and language delays, weight/nutrition problems, and oral aversions because of all of this negative stuff she is experiencing when eating/drinking. Pls check that website and see if there us anyone in your area who can facilitat faster mire efficient progress. You have the right to cgane any provider at any time-- within insurance restrictions ofcourse! That includes dr, therapist, pharmacy, hospital, anyone. Dr's usually refer to their friends or those in the same building or with the same company/ hospital or those who pay big$$$ for marketing to them!! It pays to do your own homework snd check around. Ask other parents and dr offices after u check that website. I hope you get thus info and it helps. I will check back and follow to see if you respond. Ask more questions or pls give me an update. God bless. Good luck. Hope things are better for her...and you now. QUOTE=loveryan1;190913]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
    Anonymous 42789 Replies
    • December 12, 2009
    • 06:59 AM
    • 0
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