child with mouth and throat pain

[jamiels11]

My daughter for the past month and a half now has complained about her throat burning when she swallows.  She says when she swallows her salivia makes her choke, and burns her throat really bad, the other symptoms that go along with it is her mouth and teeth and hurting really bad.  She does have Asthma and also Narcolepsy with severe cataplexy.  I have taken her to an ENT specialist they have done a scope and confirmed everything looks good and it might be acid reflux, we have been treating with Zantac and Prilosec now for a month, and it hasn't helped.  We went today to see an oral surgeon (since her teeth are hurting) I figured maybe there is something in her gums that could be causing this, like a stone in her gland.. He looked at her mouth and said her teeth are fine, but her 12 year old molars are coming through???  Can molars coming through cause all of these symptoms??  What worries me, is she will not swallow instead keeps sticking paper towels in her mouth to avoid swallowing, she is not eating and drinking much as she says it makes it worse sometimes.  I am at a lost as to what to do next???  I have her on Ensure (so she keeps the vitamins in) and give her nothing but gatoraide and water to drink... This sometimes gets hurting her so bad that she cries and begs me to do something for her... I have taken her to all the specialist suggested.. If anyone can help me out with this or give me any suggestions, that can re-assure her, it would be greatly appreciated...   Thank you...

[David Tinkelman, M.D.]

You have provided nicely detailed information and I am so sorry that you and your daughter have had this agonizing experience.  I regret that I can offer no further suggestions about the possible cause of your daughter’s symptoms than those offered by the physicians who have seen her.  That her mouth and teeth are “hurting really bad” it could be helpful if her doctors would venture an opinion as to whether that pain is referred from another site in her mouth or throat or that her mouth/teeth may be the site of origin of her symptoms.  This may require further testing, for example, an MRI of her throat or more specific testing or direct examination to resolve the question of acid reflux as the primary cause.

The best advice that I can give you is that you ask her doctors, especially the oral surgeon, to be a resource for you.  By that I mean that another expert opinion be obtained and that they recommend the specialist most qualified to establish a diagnosis.  It is likely that such an individual would be found at the nearest academic (university) medical center.  It is not enough for them to say, in effect, that they have done all they can do and that they are unable to provide a diagnosis and/or relief.

One possibility to consider is that this is a problem that involves the nerves that serve the areas of her pain and thus a neurologic problem that might be defined by a Neurologist.  Another consideration might be consultation with a Gastroenterologist with a special interest in the swallowing mechanism, given that one of her primary symptoms continues to be pain with swallowing.  

One final thought.  The surface of her throat might well appear normal in the circumstance that the disease process lies beneath the surface, for example what is called peritonsillar disease or deep neck infection, disease that might be evident on a CT Scan.

Do not hesitate to seek another expert opinion and your daughter’s doctors should be able to assist you in the search for such a person.

Good luck

[jamiels11]

Thank you for the advice, luckily after I posted this, I called her ENT doctor and he did order a Swallow Study and Sinus CT, she does have reflux according to the swallow study.  The CT scan showed us a more complicated problem of stenosis of the frontal recesses and maxillary ostia.  I have no idea what this exactly means, but we do have a follow up with him next week to go over the results...  Thank you again for advice, I really appreciate you getting back with me.