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gagging & reflux & phobias... oh my...
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Wendy
Posted 2008-11-18 11:05 PM (#35526)
Subject: gagging & reflux & phobias... oh my...



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Hi everyone,

I'm a bit perplexed with a "new" situation -- and thought I'd post to see if any of you have any experience w/this or if you can offer any suggestions!?!!

Alex is suddenly gagging at the site of "stick-like" objects that "typically" go in/around the mouth... For example, just the site of a medicine dropper on the table had him gagging... A discussion about juice boxes & the straw caused him to throw up a bit... Seeing the toothpaste tube disgusted him and he gagged... A straw for milk=gag... A toothpick with fruit - no way! And, now he's also grossing out about things like wrappers (on his chili dog) or the box his Lunchable came it... It all causes him to get nauseated and want to throw up!!!??? He looses his appetite, starts to turn "green"...

This wierd phobia has come on suddenly - since his last surgery... Which is now about surgery #20... He's always been very "gaggy" and lately it has been worse, even before surgery... The docs all attribute it to reflux, since it is often worse in the morning time... He's usually really gaggy post-op for a few weeks... So all this leads me to think he's developing some strange psychological aversions due to all the intubations/surgeries... I've emailed our hospital's Child Life specialist for Surgery... Thinking I should call our Ped again to talk w/her -- since this week he's REALLY not eating much and getting so freaked out about these "sticks"!!!

Arrrrgh! What is going on??? Does he need to start going to a Shrink???
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mom2cole
Posted 2008-11-18 11:44 PM (#35527 - in reply to #35526)
Subject: Re: gagging & reflux & phobias... oh my...



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wow never heard of this before, sounds quite perplexing. Definitely not good if not eating much now as I am sure he is like others who need all the food they can get to not be sooo skinny. I hope you find some answers soon on this. Keep researching and I too would talk with Ped to see her opinion on what to do. Have you tried researching online? Not sure how to search for something like that tho. Have you tried talking to him yourself and explaining things on his level? Tho that too sounds confusing as to what to say as sounds like he definitely isnt faking or just somewhat gagging. Turning green and getting sick somewhat..yuk! not good Hopefully somebody here will have some advice as seems everyone is so useful there is always advice for so many issues here. Shrink? I wouldnt go that far yet. Hopefully just a phase that will pass.
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Carmell
Posted 2008-11-19 12:06 AM (#35529 - in reply to #35526)
Subject: RE: gagging & reflux & phobias... oh my...



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Hi Wendy,

This sounds odd to me.  Some type of oral aversion.  I'm sure there is a therapist/counselor or someone who specializes in oral aversion.  Have you asked him why he gags?  Maybe he needs to talk with you about something?  Maybe he doesn't know why he's gagging and having these issues with certain foods/sticks?  I wouldn't take it lightly.  I'd be contacting someone who knows about this stuff who can help him directly.  Sometimes the parent-child relationship gets in the way of helping them.  I don't think it's behavioral (at least not consciously, maybe sub-consciously) so finding the real problem is necessary.  Maybe this is his way of acting up because he has NO control over many decisions in his life?

Is his reflux well controlled?  It sounds more like an aversion, not reflux to me.  Reflux is reflux.  Period.  Aversion is more what he's experiencing.  Does he act this way at school?  When he's NOT with you?  Thinking out loud here...

Good luck and let us know what you find out.

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Wendy
Posted 2008-11-19 12:11 PM (#35530 - in reply to #35529)
Subject: RE: gagging & reflux & phobias... oh my...



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Yes, this happens to him at school, too -- when we're with him and without... Alex says its getting worse, happening at lunchtime, not just breakfast... We do talk about it alot and I explain that i'm trying to understand so we can help... Our Child Life specialist is suggesting he may need to see an Eating Disorders person... (is that an occupational therapist)? I called our Ped and can't get in until 12/3. I have a feeling it is in part, related to reflux... The icky feeling from reflux -- added with his aversion -- just makes for an all-around unpleasant tummy... I also wonder, if in part, it is related to his curvature... Could there be a twist or turn that is affecting his "pipes" so to speak??? His rib hump is not getting any better, and in fact there was very little improvement post-op -- and I wonder if something inside is getting squashed??? His poor body is so small and so overdeveloped on one side... And then, there is still the issue of lingering pain from surgery... Is he taking too much motrin/tylenol??? Could pain be triggering something??? Aiyeee... It's all so strange and stressful...
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Zoes Nana
Posted 2008-11-19 12:30 PM (#35532 - in reply to #35526)
Subject: Re: gagging & reflux & phobias... oh my...



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WENDY,
DOES ALEX HAVE A PED. GI?
I WOULD BE CONTACTING HIM...JUST TO MAKE SURE IT IS NOTHING
"MECHANICAL"...ESP. SINCE HE JUST HAD ANESTHESIA...
WITH BEING VENTED, I KNOW MYSELF ONCE I HAD TROUBLE WITH MY THROAT AFTER...ALMOST LIKE A SWELLING AND BRUISING...JUST A THOUGHT...
ZOE HAS A VERY SENSITIVE "GAG REFLEX" AND WHEN HER REFLUX WASN'T UNDER CONTROL, EVEN IF SHE SAW SOMEONE
SNEEZE, OR SAW A KID WITH A RUNNY NOSE...SHE WOULD GAG TILL SHE PUKED, AND SHE WOULD LOSS HER WHOLE DAYS NUTRITION...
PLEASE KNOW THAT ALEX, AND YOU ARE IN OUR THOUGHTS AND PRAYERS...

GOD BLESS....
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Carmell
Posted 2008-11-19 1:48 PM (#35537 - in reply to #35530)
Subject: RE: gagging & reflux & phobias... oh my...



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Hi again, Wendy,

Thanks for the additional details.  Most "specialists" who deal with food aversion are speech therapists, I think.  Or OT.  The ONLY thing that may be a negative factor is that MOST people who work with kids who have food aversions believe it is ALL behavioral.  They don't even consider structural issues.  For Alex, structural issues are a DEFINITE possibility.

I agree 100% with Jobey - find a GOOD ped. GI doc who is willing to look at the whole picture.  Has he had an endoscopy/esophagram lately?  That's a start.  I do know that reflux can certainly aggrevate food/texture aversions.  The key here is to find someone willing to listen to the issues you've described, and take them all seriously.  Not poo-poo it and say it's behavioral.  You must rule out structural things before resorting to behavioral issues.  Good luck.



Edited by Carmell 2008-11-19 1:49 PM
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Wendy
Posted 2008-11-19 8:00 PM (#35544 - in reply to #35537)
Subject: RE: gagging & reflux & phobias... oh my...



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Thanks for the feedback Carmell and Jobey. Interesting about Zoe's gag thing -- that is very similar to Alex... What or how is her reflux/GERD treated to get it under control???

I did internet searching today (don't the docs just LUV that! ha!) and got some messages back from our Ortho folks -- and so I'm feeling strongly that this is a two-fold issue. GERD/reflux AND possibly an pyschological reaction to the numerous surgeries -- perhaps like post-op stress/anxiety...

Interestingly, even though he is a VACTERL kid, Alex has never had any extensive testing for his reflux or any esophogeal studies done -- they say because everything has been functioning normally. Last Peds visit, we discussed the reflux and the gagging, but it wasnt anything too major to warrant testing... Now, it seems we need to address it!

The Ortho folks have given us the name of a ped psychiatrist, whom has worked with many of their patients... Hmmm??? First we'll go see the pediatrician 12/3 and start from there...

Sheesh... Poor kid... He can't eat well and he still can't make it through a full day at school yet due to the armpit pain...

Wendy



Edited by Wendy 2008-11-19 8:03 PM
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tmsuggs01
Posted 2008-11-19 8:44 PM (#35546 - in reply to #35526)
Subject: Re: gagging & reflux & phobias... oh my...



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Praying that you can find some answers soon!
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mom2cole
Posted 2008-11-19 9:22 PM (#35547 - in reply to #35526)
Subject: Re: gagging & reflux & phobias... oh my...



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Poor kiddo, hope things get better soon for him. Sounds like you are now on the right track. Cole was diagnosed with Gerd and hyetial hernia years back and now does have a Ped GI doc but that only happened when he did have issues with vomiting. So I can understand how you dont yet have one as never had the issues. Cole's Ped also helps us if need be with meds for the reflux if it acts up. The GI doc said he could have these issues due to his severe curvature. He had an endoscopy done, never needed hernia operated on as was very mild (I too recently diagnosed with same thing). It does sound like two issues combined here with Alex and some GI work ups might be in store just to see what is actually going on inside that tummy of his.

Also, there is a new mom posting this wk named Leanna about her son Ty and when reading a new post from today it mentioned aversions when describing his medical probs. Maybe you could PM her to see if anything similar to what you are experiencing. Good luck!!!!
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stees
Posted 2008-11-20 12:27 AM (#35548 - in reply to #35526)
Subject: Re: gagging & reflux & phobias... oh my...


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Hi Wendy,
I just tuned in. This really bakes the cake! Malcolm has a strong gag reflex that seems to have abated in recent years since his surgeries. He has a rod on each side of his spine, which helps with the kyphosis. We still have lots of problems. Right now he has a sore back and protuberance but no one can guess why. We're seeing surgeon on Dec 2.
But back to Alex. I agree that an investigation of his gi tract and the effect of his scoliosis is in order. The mind and the body are linked nd there are constant reinforcements going on. The sooner it can be addressed the better, as if it is partly psychological, it will be easier to treat.

Are his bowels moving okay?

Just another random thought... we have bowel issues with William and he loses his appetitie if he gets too clogged up.

Keep us posted as it helpful to hear about all the resources people are suggesting, and how you're navigating the system.
And GOOD LUCK.
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Zoes Nana
Posted 2008-11-20 11:37 AM (#35551 - in reply to #35526)
Subject: Re: gagging & reflux & phobias... oh my...



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WENDY,
ZOE HAS GONE THRU THE "WRINGER" WITH THIS GAGGING, AND REFLUX...SO I KNOW HOW FRUSTRATED YOU ARE FEELING...
ZOE IS NOW ON "PREVACID" MOST OF TIME 15, BUT SOMETIMES HAS TO BE BOOSTED TO 30MG...
ZOE AS I THINK YOU KNOW UNFORTUNATLEY HAS GONE ON TO DEVELOP THIS LOUSY "CYCLIC VOMITING SYNDROME"...
NOTHING TO DO WITH HER STRUCTURE, BUT IT CAME WITH A "VIRUS"...
HANG IN THERE, AND TAKE IT A STEP AT A TIME...HOPEFULLY THERE WILL SOON BE A EASY FIX TO ALL OF THIS...

GOD BLESS....
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Diane17
Posted 2008-11-20 8:20 PM (#35556 - in reply to #35551)
Subject: Re: gagging & reflux & phobias... oh my...



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Wendy, I hope you and Alex get some help at your peds appt. I know Noah does this with liquid pain meds, but I'm pretty sure his is behavioral. It's so frustrating when our skinny kids are aren't able to eat much.
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Wendy
Posted 2008-12-01 5:37 PM (#35650 - in reply to #35526)
Subject: RE: gagging & reflux & phobias... oh my...



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just a little update... actually, not really an update, but another strange thing that only adds to my worries and stress... we were in hawaii for thanksgiving break, actually there to attend to my grandmother's funeral. on thanksgiving nite, Alex developed a fever. he began to complain about his side/hip area hurting, too... fever persisted up n down for the next 48 hours and the pain in hip area went away, but increased in his armpit area again... since then, he's been running a low fever (about 100) and still experiencing alot of pain in armpit... occasionally his hip area hurts... In addition to all this, his gagging and aversions came on with a vengeance, too... So, instead of waiting to see the ped on 12/3 -- we're headed there in a few hours. When Alex is loaded with tylenol and motrin, he can get around and be somewhat normal -- but the pain, and lingering fever have me worried... sigh... i hope he doesn't have an infection!!!! wondering what it could be??? Are they all related or just random things happening??? He's sort of walking around like he was when his rod was broken... Leaning to one side, arm in protective manner... Since his expansion on 11/4, he sure has not been himself... It's so upsetting to see him like this...

Wendy
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Maggie's Mom
Posted 2008-12-01 7:08 PM (#35651 - in reply to #35526)
Subject: Re: gagging & reflux & phobias... oh my...



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Keep us updated Wendy, I have been following your postings about Alex's gagging and reflux. I agree with Susan. Thinking of you both. Hugs, I know that you have had a rough year.
Susanne
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mom2cole
Posted 2008-12-01 8:23 PM (#35652 - in reply to #35651)
Subject: Re: gagging & reflux & phobias... oh my...



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Oh boy sorry for all this you guys have gone thru. Hoping it is nothing serious. keep us updated when you can.
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Wendy
Posted 2008-12-02 12:57 PM (#35661 - in reply to #35650)
Subject: RE: gagging & reflux & phobias... oh my...



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Alex's peds appointment gave me no answers... However, she IS prescribing prevacid (or was it prilosec?) for his gagging (reflux) -- which is having some difficulty clearing my insurance for some Irritating reason -- so I can't get him started on it yet... She feels whatever is causing Alex's fever -- we need to wait and see... Since it isn't high, she wants to give his body time to do it's job... If it gets over 101, she wants him to come in for blood draw/labs to check crp, sed rate and counts, etc. As far as the pain -- not sure what or why, but it does seem when the temperature goes up a degree or two, his pain increases... So, for now, I just continue to give him tylenol/motrin and just hope an pray it all goes away! Doc is hoping that once his gagging and nausea are controlled, he will stop having the wierd aversions to "stick" things... If it doesn't, we'll look into behavioral specialists... I'm really mostly concerned right now with the fever and pain... Yesterday he began to complain of his shoulder now hurting... it's his whole left side where the implants are. he's not his usual active self and it's getting very frustrating for him... He's getting alot more emotional about everything right now... The slightest thing sets him off...

W.
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mom2cole
Posted 2008-12-02 4:22 PM (#35662 - in reply to #35526)
Subject: Re: gagging & reflux & phobias... oh my...



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Hi Wendy,
I am surprised your Ped did not have some samples to give you for the reflux. Cole's reflux isnt bad anymore so when we did see her for it recently she (the ped) gave us samples of prevacid I believe. I dont even think we needed to get an RX. I read online recently that we consumers should always ask for as many samples as we can as the Docs get lots of them. I have an appt tomorrow for my reflux and am asking for samples myself. OUr medical grp is good with this and sometimes we dont have to even ask. Regarding ins, I had issues with trying to get nexium so got switched to protonix last yr. Insurance companies frustrate me to no end! I hope it gets resolved and Alex can get the meds he needs asap.

Have you talked to Skaggs about everything? Sometimes tho it seems even the Docs cant figure it out for awhile. So very frustrating for you all. OUr ped always says how low grade fever is not too bad but I know Cole;s regular temp and so when he gets even low grade I know something is up.

Good luck and I hope he is feeling better real soon.
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Maggie's Mom
Posted 2008-12-03 7:37 AM (#35667 - in reply to #35526)
Subject: Re: gagging & reflux & phobias... oh my...



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Wendy- what is your (no pun intended) gut feeling? Do you feel like there is something more to this? From what I have read in your posts I am getting the feeling that you are not buying what the Peds is telling you. When I get that feeling I find I have to get really pushy to get a good work up, sometimes I am exhausted (which I know you are) and it feels like I am being overprotective but I have to say that if I go with my gut it usually is right. Wish I could reach across the country and give you a proper hug and cuppa of tea. Susannne

Edited by Maggie's Mom 2008-12-03 7:39 AM
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joshuas mom
Posted 2008-12-06 4:53 PM (#35679 - in reply to #35667)
Subject: Re: gagging & reflux & phobias... oh my...


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Wendy_ My son Joshua had (past tense) very severe oral aversion since birth. It was directly related to the fact he was intubated immediately after birth and for months afterwards. He had so much suctioning and negative oral stimulation that he had very similar symtoms to what you are describing with your son Alex. Josh would toungue thrust, gag, wretch, drool excessively and even vomit if anything went in his mouth. Even the sight of certain things... water and dried rice/beans specifically would cause him to react. It is a very real syndrome! Ovbiously Joshua was fed supplementally, via gtube. SO... We took him to the University of Virginia to a clinic called Kluge, spent two weeks there and many many months after with at home follow up but it worked! It has been 6 years and he now eats everything in sight. The only foods he cant handle are cottage cheese and applesauce. But hey, he can live without those things! The director of the program is Polly Tarbell. Not sure if this will help but your story sounded so familiar I thought I would at least pass it along. Best wishes! Stephanie
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