I don't really know where to put this so I will put it here and you all can move it if needed.
I have scheduled Mike with an ENT who evidently has a knowledge base of people/kids with swallowing issues and g-tube. Has anyone seen a doctor like this for dysphagia? My local ENT doc took his tonsills and adenoids out but seemed clueless at the lack of swallowing?? I hope there is something out there to help him and this guy knows about it.
I'm also convinced something is up with his ears. We have had his hearing checked once and they say he passed the test. However, every time he goes to the doctor he says there is evidence of fluid in one ear or the other but no redness or infection. I'm assuming any fluid would hinder sound and therefore speech?
I don't know maybe a shot in the dark but I have to keep trying. Know what I mean? I just feel like there has to be something out there to help him and if I stop looking I will kick myself.
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Mommy to Michael 3 years old with GERD , Apnea, Speech and global delays, Oral aversion, Sensory disorder, swallow dysfunction, asperations, Self starver=FTT.
Tonsills and adenoids remove 6/09
Gtube Aug 2009
Meds: Prevacid 30mg, mylanta , E'Mycin Elecare
We live in West Texas but travel to Fort Worth to the Childrens Hospital for all of Mike's care.
An ENT is an awesome doctor to go see for Dysphagia!!!
It's a smart move for sure!
My sons Dysphagia and painful swallow actually were because of his tonsils and adenoids thankfully (I only wish I would have gone sooner to see an ENT). But an ENT could look at so many reasons behind it and it sounds like you have a good one lined up.
I think you may just get somewhere with this.
Good Luck
__________________
Minnie
Proud Mother of Emilia age 14
and Eric My almost 6 year old GERDling
GERD, Constipation, SIBO, DGE, Gastritis, Duodenitis, Esophagitis, Right sided Colitis, and kidney stones
Current meds: Nexium, Pepcid, Pentasa for inflamation,
Benefiber, Miralax, Probiotics, Periactin as an appetite stimulant, E-Mycin for DGE,
Potassium Citrate to help inhibit stone formation,
and periodic courses of Flagyl for inflammation and SIBO.
I also give him Fish Oil gummys twice a day
You might want to also try to get an appointment with a speech therapist. My son had dysphagia and I had to thicken everything to nectar consistency so that he would not aspirate. The therapist can work with him to help correct the dysphagia. Have you had a swallow study?
I am sort of bummed. He was pushing more towards reflux and fear being the issue and nothing else 'physical'. He wants to put him to sleep and 'look around'? Said he will look to see if his wind pipe is in anyway connected to his esophagus, look at his voice box and make sure it goes up and down properly and look at his swallow. hhhmm I don't know? Wouldn't his GI doc have already seen abnormalities during his scopes? Or even when placing the tube since they went down his throat? I want to find answers but am worried about putting him under again.
He said he thinks if there is nothing else going on in the throat other than reflux Mike should get the nissen? No idea what this is. He asked me if his GI doctor had talked about reflux surgery with us and I said no because they always tell me his reflux is mild and should not be causing this many problems. THe ENT looked at his tube and said This is what you call mild?
My brain is whirling in every direction. Long road trip today, screaming toddler and information overload. I always hope to go to these things and find answers to his problems, instead I get blank stares and no hope. I have no idea what to do next? must comtemplate....
__________________
Mommy to Michael 3 years old with GERD , Apnea, Speech and global delays, Oral aversion, Sensory disorder, swallow dysfunction, asperations, Self starver=FTT.
Tonsills and adenoids remove 6/09
Gtube Aug 2009
Meds: Prevacid 30mg, mylanta , E'Mycin Elecare
We live in West Texas but travel to Fort Worth to the Childrens Hospital for all of Mike's care.
First off I want to say that GI issues are NOT this doctors specialty so he has no reason to suggest a nissen( Nissen fundoplication, fundo, reflux surgery). To me he stepped over a line and made you uncomfortable and question his care without any right to do so.
(easier said than done, but) Try not to take what he said about your sons reflux to heart. It's great that he understands your plight, has knowledge about reflux, and how difficult and complicated reflux can be, but he is in no way the man that should make a call like that.
I have had plenty of docs ask about the fundo, "Does Eric's GI feel he is a good candidate for the fundo?" and only one actually say that he should have the surgery and he didn't know why it was never offered as an option. well... let's just say this doc didn't earn many points with me. I could right a novel on this, but I won't, and I will stop myself from ranting.
Just as this doctor's specialty isn't the GI tract, the GI's specialty isn't Ear nose and throat. If your child's possible throat problems were WHAMMO! in their face during the endoscope, they might notice and take note. I think there were a few floppy airways discovered this way. But what the ENT wants to scope for is much more subtle, easily missed by endoscope, and much more specialized.
with that said...I question
If he really is interested in his swallow and thinks maybe it's an issue, why not do something less invasive and even more specialized? How will he check his swallow if he's under? Why not order a swallow study?
Maybe he thinks something more structural is going on or something? Which really could be a possibility.
I know Eric's ENT (when we discussed it) thought a swallow study would be too difficult for a 2 year old. Nah! It's totally do-able. There's been even non oral eaters here that have been able to get the job done.
Maybe this ENT is slightly unfamiliar with this test as well?
__________________
Minnie
Proud Mother of Emilia age 14
and Eric My almost 6 year old GERDling
GERD, Constipation, SIBO, DGE, Gastritis, Duodenitis, Esophagitis, Right sided Colitis, and kidney stones
Current meds: Nexium, Pepcid, Pentasa for inflamation,
Benefiber, Miralax, Probiotics, Periactin as an appetite stimulant, E-Mycin for DGE,
Potassium Citrate to help inhibit stone formation,
and periodic courses of Flagyl for inflammation and SIBO.
I also give him Fish Oil gummys twice a day
HOLY CRAP Like Minnie said, he WAY WAY stepped over a line suggesting a fundo. NOT what you went to him for. If it were me, Id be looking for a new ENT asap