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Re: [Mito] Re: Cassie's Modified Barium Swallow Study

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  • Elf808@aol.com
    In a message dated 1/31/02 10:57:45 PM Central Standard Time, mkeogh@wo ... Rachel, My nine year old had to have yet another surgery (so sorry to have to tell
    Message 1 of 4 , Feb 1, 2002
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      In a message dated 1/31/02 10:57:45 PM Central Standard Time, mkeogh@... writes:


      Can anyone related to this type of problem in the throat?

      Thanks for listening
      Rachel


      Rachel,
      My nine year old had to have yet another surgery (so sorry to have to tell ya that!!) to remove his tonsils and adnoids. Not because of infections or such but because they were very LARGE coupled with Microcephelia (sp?? pretty much everything is micro for him from Head to feet ... though he is tallish)... leaving only about a 3cm of free space. So his choices were to either eat/drink OR breath ... so much of what you've shared sounds similar. Such as taking multiple swallows to get "a bite" down, not too much asperation (only 1 known case that apparently lead to Upper Resp. pnumo), *pockets* of trapped/stalled food down the pathway.

      We were seriously considering going the G-tube route but after the ENT received the report from the Modified Barium Swallow Study he suggested that we hold off and see how the T&A-ectomy went. Granted due to the boys/disease progression we will probably still have to go that route sometime in the future but for now it's in the "far far off" future. Cory did really well with the surgery (had a cheeseburger from McD's that afternoon) and recovery was just a tad tedious, not so much as painful (both the boys have HIGH pain tolerances) but more due to him being bored and missing school and all of his friends. It's been over a year and I can count on one hand how many times he's choked/gagged on food at dinner time which is a huge improvement from before which was 5-10 times each meal. We pretty much always thought that he was just a "thirsty" kid but realized that we (the parents/caregivers) were using the gulping as a cue to continue to tip the cup for him to drink ... little did we realize that it took him 2-3 swallows just to get the first sip down so we were *almost drowning* him in liquids without knowing it. Hindsights a real witch sometimes. He still has the tendency to need 2-3 swallows for liquid stuff so we have to take precautions such as keeping the sippy cups (Dollar General has some great one that don't look like "baby" items that are a dollar a peice and you can close the spout for no spill transportation YIPEE and are dish washer safe) for him to drink from, and not allowing straws in the house. Other than that it's almost normal meal times around here.

      Good luck and best wishes
      Romona
      mom to Tori (age 13, CAPD), Zach (age 12, multichallenged eyes to toes), Cory (age 9, multichallenged eyes to toes) and wife to Tony (my hero)
      Cory and Zach are suspected of having mitochondrial issues ... more
      specifically Complex 1 defect/OXPHOS defects with Neimann Pick Type C
      testing pending which might explain the "defects" results from the testing
      done in Atlanta by Dr. Shoffner.

    • sassynlexnzac
      I am glad the study went well. Unfortunately they had to mess up and she had to endure one more bite! I think she did great and u should be proud of her. She
      Message 2 of 4 , Feb 1, 2002
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        I am glad the study went well. Unfortunately they had to mess up and
        she had to endure one more bite! I think she did great and u should
        be proud of her. She sounds like a great kid only asking for a
        balloon. Most kids would have wanted the whole store;) Zach had
        something similar on his video. It also took him a few swallows
        to get his food down. He did out grow it but zachs disorder isnt
        progressive. I hope that it comes out well. Maybe speaking to an ent
        will be a good idea. We saw one after the video because our speech
        pathologist was relentless and wouldnt give up asking.
        Maybe they'll be able to tell you what to do to help her. I know that
        all our specialists are 45 minutes away and its a pain to go to them.
        I try to avoid them when i can:). I am starting to wonder though if
        we should go back to an ent because of zachs trouble w/ speech.
        I bet she is glad that this ordeal is overw/. Now she can relax for a
        bit.:)

        sarah
        mom to zach 18 months ga2/madd
        alexis 3 unaffected
        --- In Mito@y..., "RALPH KEOGH JR," <mkeogh@w...> wrote:
        > Hi Sarah, Jeff and all,
        > Well, its finally over. Cassie was a brave soldier in doing all
        that we asked. Have to confess though, that we now use bribery.
        Cassie has endured so many tests (ya'll know the road), that now it
        takes doing this to help her face and be willing to do what we need
        to ask of her. Today, she earned a mylar balloon, video and $5. A
        bit more then intended, but let me tell you how the day went and then
        you may agree. We got in there, Cassie was aware that she will be
        offered foods from home (told her all of the them, she was delighted
        to here them), but that the folks in radiology will have to put a
        special dye in them so they can see it on the x-rays. She was
        disappointed to hear that. Before she started her rounds of
        sampling, her Dad and I showed her that we were also tasting the
        barium. It had a pinacolata(?) taste and smell, but the usual chaky
        texture. But, we were just doing a dip of the finger to get our
        sample of it, we weren't so brave. Cassie likes split pea soup, so
        that was attempted first, then salsa on chips, applesauce and even
        sweet tea that had the barium in it--thats what they wanted to do.
        Thankfully, we had another container of tea that was not altered with
        barium. As each bite progressed, the more difficult it was for
        Cassie to tolerate the taste/texture of the barium. I believe they
        also gave her barium straight. As the sampling became more
        difficult, thats when I started asking Cassie what she would like to
        buy at Wal-Mart (one of our favorite places to shop). I was hoping
        that if I could get her to focus on the delight of a purchase at Wal-
        Mart, she may in turn manage to get through this difficult moment.
        She commented that she wanted a mylar balloon, I in turn said she can
        get that and something else, like a video. Goodness, I felt she
        certainly deserved a maylar balloon and something else to go through
        all this. When we were getting to the very end of the sampling, it
        was mentioned that this would be the last time being asked to eat--so
        I in turn was saying this to her to help her get through the last
        request. Here's the killer--on the last bite, it was noted that the
        video taping failed to remain on or simply was not turned on. My
        husband and I looked at each other, we are NOT going to ask Cassie to
        do this again. The individual that supposedly turn on the video
        machine had left the area we were in, my question is WHY??? She
        should have been keeping an eye on this the whole time. The
        radiologist and speech pathologist commented that they have been
        having problems with the video tape shutting off. At that moment I
        didn't think of what I about to say here--If you are having problems
        with it, then why didn't she stay with the machine to make sure it
        didn't turn off in the first place!!!!! Damn it! Give the video
        person a TALL glass of barium to gulp down herself. They asked, after
        all was said and done, if they could get some still shots. This is
        when I, grudgingly, ask my daughter, after I had already told her she
        had already taken the last mouthful, to take another bite and swallow
        of barium for the @#%@ medical staff to get, at least, 3 seperate
        shots. To help her get through this added request, I then offered
        the $5. Needless to say, we tried to get ahold of a survey form to
        VOICE our feelings about this. We were unable to obtain one today,
        but somehow I hope to accompolish this added task. After all was
        done, we told Cassie what a brave soldier she was and reminded her of
        her rewards.
        >
        > OK--what did we learn, so far, as of today. The speech pathologist
        commented there is a chance we may hear from an ENT. They were
        puzzled by what they saw on the shots. It appears that Cassie is
        having food collect in her throat, all of it is not going down when
        she swallows, it takes about 4-5 swallows to clear her throat of most
        of it. What was unusual in the shots was what appeared to be small
        pockets that food would collect in. On the front shots there were
        areas on both sides of her throat that appeared to have these small
        pockets that the food would get trapped in. But, from the side view,
        you would see one at the front of her throat. I'm no ENT,
        radiologist, or speech pathologist, but I wonder if there is any
        chance that her esophagus is prolapsing within itself. Therefore,
        creating the pocket-like appearance. If this is it---GOOD GRIEF! We
        want to know what is going on, but we will not put her through
        anymore surgeries--she can't handle anymore. The only time, that we
        Might consider it, is if it becomes a life threatening situation.
        The speech pathologist commented that she is not aspirating any into
        her lungs or had any penatration
        > (where it goes down the wind pipe and then comes back up). But,
        she said that is difficult to say for sure because of the limited
        amount of eatting. She stated that Cassie is at high risk for it
        though.
        >
        > So this is the story for today--I don't look forward to hear more
        from it. I'm afraid from what they found that they are going to ask
        to do futher testing. Not sure where we want to be with that. I
        want to be able to hopefully improve things for Cassie, but only the
        non-invasive route. So this is where we sit for now. Very
        discouraging.
        >
        > Can anyone related to this type of problem in the throat?
        > Thanks for listening
        > Rachel
      • Anne K Juhlmann
        I can t say for sure but it sounds similar to what my son s esophograms looked like. His showed that he had esophageal ballooning - pockets of food created
        Message 3 of 4 , Feb 1, 2002
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          I can't say for sure but it sounds similar to what my son's esophograms looked like.  His showed that he had esophageal ballooning - pockets of food created which caused the esophagus to bulge out. 
           
          It took a lot of water to get it down and many times it just did not ever make it to the stomach and he would vomit even an hour later.  Very cold or very hot foods worked a little better but nothing seemed to help completely. He usually vomited 1-3 times/day from  food being hung up in the esophagus.  I was always shocked at the amount of food that could pocket in the esophagus.  When it was stuck there he would progressively feel as if he could not breathe though his O2 sats were just fine - it just felt so strange I guess.   The episodes were heart wrenching and they were daily for 5 years because no one could tell us what was wrong or how to fix it.
           
          He had a nissen fundoplication which complicated things and I don't know if your daughter has that.  Eventually we learned that without the fundoplication or if it was looser the food would still pocket but would eventually move down.  With he fundo we had worsened his esophageal dysmotiloty unknowingly.
           
          For Zach the only solution was when they unwrapped the fundo and put it back together looser. Now his still ahs esophageal dysmotility but it is much improved and he never vomits because it does not get hung up on top of a tight fundoplication wrap.  The surgeon did a beautiful job of wrapping enough to prevent reflux but not too tight.  
           
          Unfortunately the surgery to fix that made him worse overall so I would agree with your feelings about surgeries. At the time I felt the best thing I could do was help him to stop vomiting with each meal but in hind sight that was much better than the horrible disease progression that followed the surgery.
           
          The choices are never easy and we make the best ones we can at the time.
           
          Anne
           
           
           
           
           
           
           
           
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