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Re: [avenues2] speech and language

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  • Beverly R Hanset Burch
    Bonnie has trialed the Leo by AI, and also the Mercury. She uses them a bit, then gets angry and just wants to use her mouth. She also trialed the Dynavox. And
    Message 1 of 11 , Jul 1, 2006
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      Bonnie has trialed the Leo by AI, and also the Mercury. She uses them a bit, then gets angry and just wants to use her mouth. She also trialed the Dynavox. And a tech talk. These are the ones I remember off the top of my head. We have two sitting in their boxes in her room now. They just make her angry. They do, however, get her trying to use her mouth more. She has a contracture at the TMJ. It isn't so bad though and it is getting better. She sees a couple of speech paths for augmentative communication, and then a couple for eating. However, I am now getting mixed messages. I have one therapist wanting to do another swallow study, and I have another therapist and doctor saying it is too soon. The last one was over 18 months ago. Bonnie can use the sign for more. But signing also makes her mad. She is a very opinionated little girl. (I don't know where she gets that from lol) Her neurodevelopmental pediatrician does not want us to do much orally until she has a safe swallow study. I guess I am getting rather impatient at this juncture. I want both speech and feeding! I want it all!

      So what do they have you doing at home? With Bonnie I exercise that TMJ a few times a day. I think I will up that. Then I also push on her tongue, up and down, and on her palette, and basically mush her face. Supposedly this passive muscle movement will make the active muscles stronger. I don't see how this can help much. I have a cat that mushes my fat thigh and it isn't getting any stronger. They tell me it takes a long time.

      Then for feeding, they have me put whatever in front of her, have her take tastes, etc. So far she has no oral aversion.

      It just doesn't seem like anything is making much of a difference. She does still require suctioning, but usually only when she is ill these days.

      Oh, we also try to get her to laugh each day. Might sound funny, but it has to be good for her muscles. She can only do it for so long. If the dogs are playing/fighting, this cracks her up. And if her middle brother tosses her in the air.... he doesn't really let go but I cannot watch anyway... she laughs a lot.

      I guess I just want to know what they have you doing at home, what they do in sessions, and what kind of improvement you have seen. Bonnie has been drinking water out of the bath lately, I know, disgusting but she is drinking and then blowing bubbles too. So it seems crazy to think a swallow study shouldn't happen soon.

      I know I should just be happy that she is doing so well and has come so far, etc. But I just want it all good now.
      ----- Original Message -----
      From: beki@...
      To: avenues2@yahoogroups.com
      Sent: Friday, June 30, 2006 9:54 PM
      Subject: Re: [avenues2] speech and language


      My son Jason just turned 6. He is G-tube fed and he has a contracture in his jaw making speach difficult for him. He uses a vantage box to speak with at school sometimes (think that computer Stephen Hawking uses to talk) He also uses sign. Jason can eat some, but his jaw tires out before he can get a full meal in. We are working on that part. Jason's speach is becoming more andmore intelligible every day.

      If there is one in your area, you should take her to a therapist that specializes in feeding issues if your main thing is to get her off of the tube. Eating and speaking do go hand in hand because the excersize of eating helps develop the mouth muscles to talk. Jason saw GayLloyd Pinder at Children's Therapy Center of Kent for the first 3 years of his life. She does awesome work with feeding issues. She doesnt do much regular "talking" type stuff and she generally will only see pre verbal children as she is deaf. Let me know what sort of questions you may have, and I will give it a whirl to answer.

      Beki

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    • beki@comcast.net
      I dont see how 18 months for a swallow study is too soon. Jason had them every 6 months or so until he passed. When Jason was little, we would rub his gums and
      Message 2 of 11 , Jul 1, 2006
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        I dont see how 18 months for a swallow study is too soon. Jason had them every 6 months or so until he passed. When Jason was little, we would rub his gums and push down on them or up depending on which set we were rubbing. We would also put a dollop of baby food on our fingers when we did this. That was to get some taste sensation going on in there. We also bought a little itty bitty vibrator with different attachments to rub on his face. We never did any facial mooshing or anything like that. Jason has a facial aversion due to having an NG tube strapped to his face for the first 3 months of his life. He has to really trust you to let you get near his face. He doesnt have an oral aversion. He LOVES anything with spice in it. Pico de gallo is one of his favorite things.

        I say work on both the speach and the feeding as much as possible. Jason will get frustrated and put his hands on his hips and say I SAID and then repeats whatever it is he was telling you. I think they just get frustrated and they want you to know all about it :)

        If your daughter will let you work with her mouth muscles, its great. It is g oing to take a while, but if you can avoid an abductor its all good. They wont use one on Jason because his mouth doesnt open that far. Jason is in school, so we dont get to see a lot of what they are doing. I find it rather frustrating because the school folks arent as communicative as I would like. I email them all the time from work, but I often wish they would send home hand outs so we can do a lot of the same stuff.

        Anyways, it sounds like you are doing the right things. I would push for another swallow study though. But I am anal like that ;)

        Beki

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      • Beverly R Hanset Burch
        What is an abductor? Bonnie got her g-tube at 6 weeks. Everyone is shocked how much I can do with her face. Heck, she does it herself too. I plan to volunteer
        Message 3 of 11 , Jul 1, 2006
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          What is an abductor?
          Bonnie got her g-tube at 6 weeks. Everyone is shocked how much I can do with her face. Heck, she does it herself too.
          I plan to volunteer in the schools. I am a SAHM. At this point, anyway.
          I'll see what the ENT specialist has to say. She hasn't been to one yet, but I think it would be interesting to get another opinion.
          ----- Original Message -----
          From: beki@...
          To: avenues2@yahoogroups.com
          Sent: Saturday, July 01, 2006 12:24 PM
          Subject: Re: [avenues2] speech and language


          I dont see how 18 months for a swallow study is too soon. Jason had them every 6 months or so until he passed. When Jason was little, we would rub his gums and push down on them or up depending on which set we were rubbing. We would also put a dollop of baby food on our fingers when we did this. That was to get some taste sensation going on in there. We also bought a little itty bitty vibrator with different attachments to rub on his face. We never did any facial mooshing or anything like that. Jason has a facial aversion due to having an NG tube strapped to his face for the first 3 months of his life. He has to really trust you to let you get near his face. He doesnt have an oral aversion. He LOVES anything with spice in it. Pico de gallo is one of his favorite things.

          I say work on both the speach and the feeding as much as possible. Jason will get frustrated and put his hands on his hips and say I SAID and then repeats whatever it is he was telling you. I think they just get frustrated and they want you to know all about it :)

          If your daughter will let you work with her mouth muscles, its great. It is g oing to take a while, but if you can avoid an abductor its all good. They wont use one on Jason because his mouth doesnt open that far. Jason is in school, so we dont get to see a lot of what they are doing. I find it rather frustrating because the school folks arent as communicative as I would like. I email them all the time from work, but I often wish they would send home hand outs so we can do a lot of the same stuff.

          Anyways, it sounds like you are doing the right things. I would push for another swallow study though. But I am anal like that ;)

          Beki

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        • beki@comcast.net
          I might have the spelling wrong, but basically it lifts the pharynx? I think that is what the therapist said. She doesnt like them much, but it would get that
          Message 4 of 11 , Jul 1, 2006
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            I might have the spelling wrong, but basically it lifts the pharynx? I think that is what the therapist said. She doesnt like them much, but it would get that particular muscle moving. Jason doesnt use that particular part of his mouth. It's used to form consonants. I could be misremembering what the thing is called and what muscle it works on.

            It's good that she lets you play with her face. I suspect she does it as a game. Let me make funny faces at mommy! :) Jason was quite a bit older (an old man at 3 months) when he got his tube. I dont care much for the GI clinic at Children's. They didnt want to touch Jason because they couldnt do his surgery endoscopically. Finally, his surgery specialist had had it with them and said the heck with you, I will do it myself.

            Just keep plugging away at it. She will get there.

            Beki

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          • Beverly R Hanset Burch
            They insisted on doing Bonnie s endoscopically. She had to get to 5.5 pounds. That is why it took so long because she was only 3 lbs 8 ozs at birth. They were
            Message 5 of 11 , Jul 1, 2006
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              They insisted on doing Bonnie's endoscopically. She had to get to 5.5 pounds. That is why it took so long because she was only 3 lbs 8 ozs at birth. They were sure they would find something 'odd' and of course didn't. Now I have doctors wanting to do the muscle biopsy and the nerve conductivity tests that I refused at birth to do. I wonder, anyone with AMC ever have either of those tests tell them anything?
              I'm in Oregon. Where are you? I am down near Portland.

              ----- Original Message -----
              From: beki@...
              To: avenues2@yahoogroups.com
              Sent: Saturday, July 01, 2006 3:10 PM
              Subject: Re: [avenues2] speech and language


              I might have the spelling wrong, but basically it lifts the pharynx? I think that is what the therapist said. She doesnt like them much, but it would get that particular muscle moving. Jason doesnt use that particular part of his mouth. It's used to form consonants. I could be misremembering what the thing is called and what muscle it works on.

              It's good that she lets you play with her face. I suspect she does it as a game. Let me make funny faces at mommy! :) Jason was quite a bit older (an old man at 3 months) when he got his tube. I dont care much for the GI clinic at Children's. They didnt want to touch Jason because they couldnt do his surgery endoscopically. Finally, his surgery specialist had had it with them and said the heck with you, I will do it myself.

              Just keep plugging away at it. She will get there.

              Beki

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            • beki@comcast.net
              I am up in Seattle. Howdy neighbor! Do you go to Dorenbecker (or however you spell it) Or do you come up to Seattle? Seattle does have an actual Arthro clinic.
              Message 6 of 11 , Jul 1, 2006
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                I am up in Seattle. Howdy neighbor! Do you go to Dorenbecker (or however you spell it) Or do you come up to Seattle? Seattle does have an actual Arthro clinic. I dont think any of the hospitals in Oregon do.

                Jason had a muscle biopsy and a nissen done when he had his G-tube install. The most likely reason they want the muscle biopsy is to make sure your child doesnt have spinal neural atrophy. Kids that have that do qualify for MDA aid. But I understand that there can be a lot of nerve damage for that. They may also check for neurogenic arthrogryposis as opposed to amyoplasia (the most common type). I suspect that the tests do help some folks. Being as there are a couple of hundred sub types of arthro, it may or may not help to decide on some courses of treatment. However, I am not an expert.

                Beki

                -------------- Original message --------------
                From: "Beverly R Hanset Burch" <b.hansetburch@...>

                > They insisted on doing Bonnie's endoscopically. She had to get to 5.5 pounds.
                > That is why it took so long because she was only 3 lbs 8 ozs at birth. They were
                > sure they would find something 'odd' and of course didn't. Now I have doctors
                > wanting to do the muscle biopsy and the nerve conductivity tests that I refused
                > at birth to do. I wonder, anyone with AMC ever have either of those tests tell
                > them anything?
                > I'm in Oregon. Where are you? I am down near Portland.
                >
                > ----- Original Message -----
                > From: beki@...
                > To: avenues2@yahoogroups.com
                > Sent: Saturday, July 01, 2006 3:10 PM
                > Subject: Re: [avenues2] speech and language
                >
                >
                > I might have the spelling wrong, but basically it lifts the pharynx? I think
                > that is what the therapist said. She doesnt like them much, but it would get
                > that particular muscle moving. Jason doesnt use that particular part of his
                > mouth. It's used to form consonants. I could be misremembering what the thing is
                > called and what muscle it works on.
                >
                > It's good that she lets you play with her face. I suspect she does it as a
                > game. Let me make funny faces at mommy! :) Jason was quite a bit older (an old
                > man at 3 months) when he got his tube. I dont care much for the GI clinic at
                > Children's. They didnt want to touch Jason because they couldnt do his surgery
                > endoscopically. Finally, his surgery specialist had had it with them and said
                > the heck with you, I will do it myself.
                >
                > Just keep plugging away at it. She will get there.
                >
                > Beki
                >
                > [Non-text portions of this message have been removed]
                >
                >
                >
                >
                >
                > [Non-text portions of this message have been removed]
                >
                >
                >
                >
                >
                > Yahoo! Groups Links
                >
                >
                >
                >
                >
                >
                >

                [Non-text portions of this message have been removed]
              • Beverly R Hanset Burch
                We went to Doerenbecker once.... and they had crazy advice with a surgery to break her jaw and bring it out... mandibular something osteotomy... her other docs
                Message 7 of 11 , Jul 1, 2006
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                  We went to Doerenbecker once.... and they had crazy advice with a surgery to break her jaw and bring it out... mandibular something osteotomy... her other docs said no right away. The one told me it would cure everything, make her able to nurse, not need the tube, etc. She was way too young for that and it was too good to be true... Cricket can tell you more about it when the kid is older. I go to Shriners with Bonnie. And Providence Neurodevelopmental Center for Children. And she is still in EI. Dollars to donuts Bonnie doesn't have amyoplasia. She looks classic positional. And she had a couple of other kids in utero that didn't make it. So there were space issues. And with two uteri, she decided to be partial in both. They couldn't move her. My first was one of three, and he picked one side, and life was good...but others didn't make it. Second kid decided to attach low, where they meet... he was nine weeks early. Third kid, my only vaginal birth, was in the other uterus. Went in, had him on due date when water broke, came home same day. That is the way to have a kid. Fourth kid, Bonnie, emergency c-sec. I lost her one twin at about 13 weeks, the other I don't know, it wasn't all formed well at her delivery.

                  No, no fertility drugs.

                  Aren't we all really turning into experts, at least more so than most of the experts?


                  ----- Original Message -----
                  From: beki@...
                  To: avenues2@yahoogroups.com
                  Sent: Saturday, July 01, 2006 8:45 PM
                  Subject: Re: [avenues2] speech and language


                  I am up in Seattle. Howdy neighbor! Do you go to Dorenbecker (or however you spell it) Or do you come up to Seattle? Seattle does have an actual Arthro clinic. I dont think any of the hospitals in Oregon do.

                  Jason had a muscle biopsy and a nissen done when he had his G-tube install. The most likely reason they want the muscle biopsy is to make sure your child doesnt have spinal neural atrophy. Kids that have that do qualify for MDA aid. But I understand that there can be a lot of nerve damage for that. They may also check for neurogenic arthrogryposis as opposed to amyoplasia (the most common type). I suspect that the tests do help some folks. Being as there are a couple of hundred sub types of arthro, it may or may not help to decide on some courses of treatment. However, I am not an expert.

                  Beki

                  -------------- Original message --------------
                  From: "Beverly R Hanset Burch" <b.hansetburch@...>

                  > They insisted on doing Bonnie's endoscopically. She had to get to 5.5 pounds.
                  > That is why it took so long because she was only 3 lbs 8 ozs at birth. They were
                  > sure they would find something 'odd' and of course didn't. Now I have doctors
                  > wanting to do the muscle biopsy and the nerve conductivity tests that I refused
                  > at birth to do. I wonder, anyone with AMC ever have either of those tests tell
                  > them anything?
                  > I'm in Oregon. Where are you? I am down near Portland.
                  >
                  > ----- Original Message -----
                  > From: beki@...
                  > To: avenues2@yahoogroups.com
                  > Sent: Saturday, July 01, 2006 3:10 PM
                  > Subject: Re: [avenues2] speech and language
                  >
                  >
                  > I might have the spelling wrong, but basically it lifts the pharynx? I think
                  > that is what the therapist said. She doesnt like them much, but it would get
                  > that particular muscle moving. Jason doesnt use that particular part of his
                  > mouth. It's used to form consonants. I could be misremembering what the thing is
                  > called and what muscle it works on.
                  >
                  > It's good that she lets you play with her face. I suspect she does it as a
                  > game. Let me make funny faces at mommy! :) Jason was quite a bit older (an old
                  > man at 3 months) when he got his tube. I dont care much for the GI clinic at
                  > Children's. They didnt want to touch Jason because they couldnt do his surgery
                  > endoscopically. Finally, his surgery specialist had had it with them and said
                  > the heck with you, I will do it myself.
                  >
                  > Just keep plugging away at it. She will get there.
                  >
                  > Beki
                  >
                  > [Non-text portions of this message have been removed]
                  >
                  >
                  >
                  >
                  >
                  > [Non-text portions of this message have been removed]
                  >
                  >
                  >
                  >
                  >
                  > Yahoo! Groups Links
                  >
                  >
                  >
                  >
                  >
                  >
                  >

                  [Non-text portions of this message have been removed]





                  [Non-text portions of this message have been removed]
                • cricket_lighter
                  Bekah had both of those test when she was in NICU. If you ask me they were both a waste of time and money. We learned nothing more then we already new. Her
                  Message 8 of 11 , Jul 4, 2006
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                    Bekah had both of those test when she was in NICU. If you ask me
                    they were both a waste of time and money. We learned nothing more
                    then we already new. Her muscles were not working right, but she
                    did have muscle. As she has gotten older to a ripe age of 8 she is
                    learning how to make some of her muscle groups work. She is able to
                    kick from the L knee and is able to point her L toes just a little.

                    I would find out what the dr. wants to get from the tests and see if
                    there is a different way of getting it.
                    Cricket


                    --- In avenues2@yahoogroups.com, "Beverly R Hanset Burch"
                    <b.hansetburch@...> wrote:
                    >
                    > They insisted on doing Bonnie's endoscopically. She had to get to
                    5.5 pounds. That is why it took so long because she was only 3 lbs 8
                    ozs at birth. They were sure they would find something 'odd' and of
                    course didn't. Now I have doctors wanting to do the muscle biopsy
                    and the nerve conductivity tests that I refused at birth to do. I
                    wonder, anyone with AMC ever have either of those tests tell them
                    anything?
                    > I'm in Oregon. Where are you? I am down near Portland.
                    >
                    > ----- Original Message -----
                    > From: beki@...
                    > To: avenues2@yahoogroups.com
                    > Sent: Saturday, July 01, 2006 3:10 PM
                    > Subject: Re: [avenues2] speech and language
                    >
                    >
                    > I might have the spelling wrong, but basically it lifts the
                    pharynx? I think that is what the therapist said. She doesnt like
                    them much, but it would get that particular muscle moving. Jason
                    doesnt use that particular part of his mouth. It's used to form
                    consonants. I could be misremembering what the thing is called and
                    what muscle it works on.
                    >
                    > It's good that she lets you play with her face. I suspect she
                    does it as a game. Let me make funny faces at mommy! :) Jason was
                    quite a bit older (an old man at 3 months) when he got his tube. I
                    dont care much for the GI clinic at Children's. They didnt want to
                    touch Jason because they couldnt do his surgery endoscopically.
                    Finally, his surgery specialist had had it with them and said the
                    heck with you, I will do it myself.
                    >
                    > Just keep plugging away at it. She will get there.
                    >
                    > Beki
                    >
                    > [Non-text portions of this message have been removed]
                    >
                    >
                    >
                    >
                    >
                    > [Non-text portions of this message have been removed]
                    >
                  • Beverly R Hanset Burch
                    There isn t, so why bother since we all know how it will come back? Why pain? She is not a human guinea pig. I already told them I don t want to do it. I am
                    Message 9 of 11 , Jul 4, 2006
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                      There isn't, so why bother since we all know how it will come back? Why pain? She is not a human guinea pig.
                      I already told them I don't want to do it. I am still curious if for anyone they came back with more information. I have yet to hear where they did!
                      ----- Original Message -----
                      From: cricket_lighter
                      To: avenues2@yahoogroups.com
                      Sent: Tuesday, July 04, 2006 11:35 AM
                      Subject: [avenues2] Re: speech and language


                      Bekah had both of those test when she was in NICU. If you ask me
                      they were both a waste of time and money. We learned nothing more
                      then we already new. Her muscles were not working right, but she
                      did have muscle. As she has gotten older to a ripe age of 8 she is
                      learning how to make some of her muscle groups work. She is able to
                      kick from the L knee and is able to point her L toes just a little.

                      I would find out what the dr. wants to get from the tests and see if
                      there is a different way of getting it.
                      Cricket

                      --- In avenues2@yahoogroups.com, "Beverly R Hanset Burch"
                      <b.hansetburch@...> wrote:
                      >
                      > They insisted on doing Bonnie's endoscopically. She had to get to
                      5.5 pounds. That is why it took so long because she was only 3 lbs 8
                      ozs at birth. They were sure they would find something 'odd' and of
                      course didn't. Now I have doctors wanting to do the muscle biopsy
                      and the nerve conductivity tests that I refused at birth to do. I
                      wonder, anyone with AMC ever have either of those tests tell them
                      anything?
                      > I'm in Oregon. Where are you? I am down near Portland.
                      >
                      > ----- Original Message -----
                      > From: beki@...
                      > To: avenues2@yahoogroups.com
                      > Sent: Saturday, July 01, 2006 3:10 PM
                      > Subject: Re: [avenues2] speech and language
                      >
                      >
                      > I might have the spelling wrong, but basically it lifts the
                      pharynx? I think that is what the therapist said. She doesnt like
                      them much, but it would get that particular muscle moving. Jason
                      doesnt use that particular part of his mouth. It's used to form
                      consonants. I could be misremembering what the thing is called and
                      what muscle it works on.
                      >
                      > It's good that she lets you play with her face. I suspect she
                      does it as a game. Let me make funny faces at mommy! :) Jason was
                      quite a bit older (an old man at 3 months) when he got his tube. I
                      dont care much for the GI clinic at Children's. They didnt want to
                      touch Jason because they couldnt do his surgery endoscopically.
                      Finally, his surgery specialist had had it with them and said the
                      heck with you, I will do it myself.
                      >
                      > Just keep plugging away at it. She will get there.
                      >
                      > Beki
                      >
                      > [Non-text portions of this message have been removed]
                      >
                      >
                      >
                      >
                      >
                      > [Non-text portions of this message have been removed]
                      >





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