Loading ...
Sorry, an error occurred while loading the content.

New here

Expand Messages
  • mrs_g2005
    Hi, I m new to the group (and I apologize in advance for being so long --- I just don t know where to turn anymore & am hoping someone reading my story can
    Message 1 of 5 , May 4, 2004
    • 0 Attachment
      Hi, I'm new to the group (and I apologize in advance for being so
      long --- I just don't know where to turn anymore & am hoping someone
      reading my story can help me out here). My 5 mo. old son has been
      recently diagnosed with arthrogryposis... sort of... they think...
      <sigh>>>>>

      At birth none of the doctors who saw him (our ped practice has 7
      different doctors, we've seen almost all of them at one time or
      another) noticed anything wrong with him. When he was 3 days old
      (and we were being seen in the office for his jaundice) I brought to
      the doctor's attention that his feet were turned in and that his
      knees didn't straighten out completely. The doctor looked it over &
      said he'd refer us to an orthopedist for a consultation... after we
      get past the jaundice, etc.

      At his one month checkup, I pointed this out again to the doctor (and
      why didn't the doctor notice it himself?? Any of them???)and he
      referred us to an orthopedist (at Hospital for Joint Disease in NYC).
      We saw the orthopedist when the baby was 8 weeks old & he didn't seem
      overly concerned --- showed me stretching excercises to do with the
      feet & mentioned that if it didn't get corrected then eventually
      (like in another 6 mos.) he might prescribe special shoes. For the
      bent knees (at that time, about 20 degrees one leg, & 25 degrees the
      other leg) he prescribed PT & casually mentioned that the baby is
      hypotonic besides (again, didn't seem overly worried) and gave a
      referral to Early Intervention.

      We got started with EI and went back to my ped. with this info ---
      they looked him over, called in the topmost guy in the practice, who
      also looked him over, agreed that yes, he does seem "a bit floppy"
      and agreed that we should get PT through EI. Again, nobody seemed
      particularly worried.

      A couple of weeks later he developed pneumonia & a UTI(3 other kids
      in the house were coughing & had high fevers that week, no wonder!).
      He didn't nurse too well that week, but that didn't surprise anyone.
      But the following week, not only didn't he nurse well --- he totally
      stopped sucking altogether --- at this point they ran another million
      blood tests, etc... no, he's not sick, no we don't know why he
      suddenly stopped sucking!

      At that time they did notice that he *also* has a high arched palate -
      -- which apparantly didn't bother him until then..... I had to
      syringe feed him for the next 2 weeks, he was very weak... finally I
      found a nipple he could use --- wider "bump" at the base (regular
      nipple just shot right out of his mouth, he couldn't grip it -- weak
      facial muscles & high palate together) and a larger hole so he didn't
      have to work too hard. (Currently I am pumping every 3 hours, bottle
      feeding him my milk, supplementing with formula if need be... did I
      mention that I have other kids and that my son is getting married in
      less than 3 weeks????)

      That was when they decided he needed a feeding therapist as well, so
      they rushed it through (that was the week of the IFSP [or whatever
      the initials are] meeting for EI). He got approved for 3x a week PT
      and 3x a week ST(feeding therapy, actually).

      That was also when they referred us to a neurologist.

      Took another 2 mos to get in to see him, he took a whole panel of
      bloodwork, and though he talked a lot, he didn't say much in terms of
      what it might actually be (though he talked at length about a million
      things he didn't think it was...)

      Last week we went back to the neurologist. Thankfully all of the
      genetic testing came back normal as did the muscle enzymes. He now
      wants to take some more tests (nerve/muscle conduction, brain MRI,
      etc.) (We go back to the orthopedist next week, we'll see what he has
      to say about additional testing.) While he did go on mentioning
      another 50 possible diagnoses (none of which did he actually seem to
      think it might be...) he did sort of mention arthrogryposis ---
      *without* saying "...but I don't really think its that..." --- that's
      what leads me to believe that this might be what he's leaning towards
      LOL!

      The pediatrician doesn't know much on the subject. The PT seems to be
      the only one who seems to know anything about anything here (and
      she's concerned enough to be doing research.)

      She feels that the more she researches, the more he seems to fit the
      profile for arthrogryposis. She feels that he should be getting
      orthotics ASAP because his feet (mostly the left one) seems to be
      getting worse (not just turning in, but curved downward, big toe
      pointing down, as well). She also feels that he needs some device to
      hold his hips in "neutral" --- instead of just letting them flop
      outward. (We're working on rigging up up something with a velcro
      strap). She also feels we should be looking ahead to some device to
      hold him standing --- while he can't pick his head up when prone, he
      does have good trunk control when held upright, which she says is
      typical in arthrogryposis.

      So anyway, we seem to be going symptom by symptom here, we have a
      sort of diagnosis and I'm wondering if any of you have any other
      suggestions? Anything else we should be doing? Anyone else we should
      be seeing?

      Again, my apologies for the great length of this post. I hope someone
      can help us out here!

      Thanks,
      Margaret
    • Michelle Hagen
      mrs_g2005 wrote:Hi, I m new to the group (and I apologize in advance for being so long --- I just don t know where to turn anymore & am
      Message 2 of 5 , May 5, 2004
      • 0 Attachment
        mrs_g2005 <mrs_g2005@...> wrote:Hi, I'm new to the group (and I apologize in advance for being so
        long --- I just don't know where to turn anymore & am hoping someone
        reading my story can help me out here). My 5 mo. old son has been
        recently diagnosed with arthrogryposis... sort of... they think...
        <sigh>>>>>

        At birth none of the doctors who saw him (our ped practice has 7
        different doctors, we've seen almost all of them at one time or
        another) noticed anything wrong with him. When he was 3 days old
        (and we were being seen in the office for his jaundice) I brought to
        the doctor's attention that his feet were turned in and that his
        knees didn't straighten out completely. The doctor looked it over &
        said he'd refer us to an orthopedist for a consultation... after we
        get past the jaundice, etc.

        At his one month checkup, I pointed this out again to the doctor (and
        why didn't the doctor notice it himself?? Any of them???)and he
        referred us to an orthopedist (at Hospital for Joint Disease in NYC).
        We saw the orthopedist when the baby was 8 weeks old & he didn't seem
        overly concerned --- showed me stretching excercises to do with the
        feet & mentioned that if it didn't get corrected then eventually
        (like in another 6 mos.) he might prescribe special shoes. For the
        bent knees (at that time, about 20 degrees one leg, & 25 degrees the
        other leg) he prescribed PT & casually mentioned that the baby is
        hypotonic besides (again, didn't seem overly worried) and gave a
        referral to Early Intervention.

        We got started with EI and went back to my ped. with this info ---
        they looked him over, called in the topmost guy in the practice, who
        also looked him over, agreed that yes, he does seem "a bit floppy"
        and agreed that we should get PT through EI. Again, nobody seemed
        particularly worried.

        A couple of weeks later he developed pneumonia & a UTI(3 other kids
        in the house were coughing & had high fevers that week, no wonder!).
        He didn't nurse too well that week, but that didn't surprise anyone.
        But the following week, not only didn't he nurse well --- he totally
        stopped sucking altogether --- at this point they ran another million
        blood tests, etc... no, he's not sick, no we don't know why he
        suddenly stopped sucking!

        At that time they did notice that he *also* has a high arched palate -
        -- which apparantly didn't bother him until then..... I had to
        syringe feed him for the next 2 weeks, he was very weak... finally I
        found a nipple he could use --- wider "bump" at the base (regular
        nipple just shot right out of his mouth, he couldn't grip it -- weak
        facial muscles & high palate together) and a larger hole so he didn't
        have to work too hard. (Currently I am pumping every 3 hours, bottle
        feeding him my milk, supplementing with formula if need be... did I
        mention that I have other kids and that my son is getting married in
        less than 3 weeks????)

        That was when they decided he needed a feeding therapist as well, so
        they rushed it through (that was the week of the IFSP [or whatever
        the initials are] meeting for EI). He got approved for 3x a week PT
        and 3x a week ST(feeding therapy, actually).

        That was also when they referred us to a neurologist.

        Took another 2 mos to get in to see him, he took a whole panel of
        bloodwork, and though he talked a lot, he didn't say much in terms of
        what it might actually be (though he talked at length about a million
        things he didn't think it was...)

        Last week we went back to the neurologist. Thankfully all of the
        genetic testing came back normal as did the muscle enzymes. He now
        wants to take some more tests (nerve/muscle conduction, brain MRI,
        etc.) (We go back to the orthopedist next week, we'll see what he has
        to say about additional testing.) While he did go on mentioning
        another 50 possible diagnoses (none of which did he actually seem to
        think it might be...) he did sort of mention arthrogryposis ---
        *without* saying "...but I don't really think its that..." --- that's
        what leads me to believe that this might be what he's leaning towards
        LOL!

        The pediatrician doesn't know much on the subject. The PT seems to be
        the only one who seems to know anything about anything here (and
        she's concerned enough to be doing research.)

        She feels that the more she researches, the more he seems to fit the
        profile for arthrogryposis. She feels that he should be getting
        orthotics ASAP because his feet (mostly the left one) seems to be
        getting worse (not just turning in, but curved downward, big toe
        pointing down, as well). She also feels that he needs some device to
        hold his hips in "neutral" --- instead of just letting them flop
        outward. (We're working on rigging up up something with a velcro
        strap). She also feels we should be looking ahead to some device to
        hold him standing --- while he can't pick his head up when prone, he
        does have good trunk control when held upright, which she says is
        typical in arthrogryposis.

        So anyway, we seem to be going symptom by symptom here, we have a
        sort of diagnosis and I'm wondering if any of you have any other
        suggestions? Anything else we should be doing? Anyone else we should
        be seeing?

        Again, my apologies for the great length of this post. I hope someone
        can help us out here!

        Thanks,
        Margaret



        Yahoo! Groups SponsorADVERTISEMENT


        ---------------------------------
        Yahoo! Groups Links

        To visit your group on the web, go to:
        http://groups.yahoo.com/group/arthrogryposissupportgroup/

        To unsubscribe from this group, send an email to:
        arthrogryposissupportgroup-unsubscribe@yahoogroups.com

        Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


        . Have your Drs. Heard of club foot? I guess it is pretty common with Arthrogryposis. My daughter had club foot surgery when she was 7 mo. old. After months of casting her feet. It does sound like your son could have Arthrogryposis. I don't know where you are from but I know the Shriner's Hospital in MN has an Arthrogryposis clinic every year and they have wonderful Drs. They have seen many cases of Arthrogryposis. If you can make an appointment to be seen there or call to find a place close to where you are here is the number 1 888 293-2832 hours are M-F 8:00-4:00 Central time. I hope this helps. Michelle

        ---------------------------------
        Do you Yahoo!?
        Win a $20,000 Career Makeover at Yahoo! HotJobs

        [Non-text portions of this message have been removed]
      • Tricia Decker
        I m sorry to hear that you are having such a hard time. I have a 7 year old girl with bilaterial clubfeet and arthogryposis. We are original from New York but
        Message 3 of 5 , May 6, 2004
        • 0 Attachment
          I'm sorry to hear that you are having such a hard time. I have a 7 year old girl with bilaterial clubfeet and arthogryposis. We are original from New York but now reside in Tennessee. The doctor that we used for the first 6 years of my daughters life was great. His name is Dr. Damon Delbello. He is located in Rye, NY. He has partners and other offices too. Don't know how far that is from you. We also had takin her to the Shriner's in Boston, Mass. Let me know if you want addresses and phone numbers. A lot of what you said in your letter sounds like the things we went threw. I'll be glad to talk to you drop me line if I can help. praying for you and your family.
          Trish and Trisitian(my daughter) from Tennessee

          mrs_g2005 <mrs_g2005@...> wrote:
          Hi, I'm new to the group (and I apologize in advance for being so
          long --- I just don't know where to turn anymore & am hoping someone
          reading my story can help me out here). My 5 mo. old son has been
          recently diagnosed with arthrogryposis... sort of... they think...
          <sigh>>>>>

          At birth none of the doctors who saw him (our ped practice has 7
          different doctors, we've seen almost all of them at one time or
          another) noticed anything wrong with him. When he was 3 days old
          (and we were being seen in the office for his jaundice) I brought to
          the doctor's attention that his feet were turned in and that his
          knees didn't straighten out completely. The doctor looked it over &
          said he'd refer us to an orthopedist for a consultation... after we
          get past the jaundice, etc.

          At his one month checkup, I pointed this out again to the doctor (and
          why didn't the doctor notice it himself?? Any of them???)and he
          referred us to an orthopedist (at Hospital for Joint Disease in NYC).
          We saw the orthopedist when the baby was 8 weeks old & he didn't seem
          overly concerned --- showed me stretching excercises to do with the
          feet & mentioned that if it didn't get corrected then eventually
          (like in another 6 mos.) he might prescribe special shoes. For the
          bent knees (at that time, about 20 degrees one leg, & 25 degrees the
          other leg) he prescribed PT & casually mentioned that the baby is
          hypotonic besides (again, didn't seem overly worried) and gave a
          referral to Early Intervention.

          We got started with EI and went back to my ped. with this info ---
          they looked him over, called in the topmost guy in the practice, who
          also looked him over, agreed that yes, he does seem "a bit floppy"
          and agreed that we should get PT through EI. Again, nobody seemed
          particularly worried.

          A couple of weeks later he developed pneumonia & a UTI(3 other kids
          in the house were coughing & had high fevers that week, no wonder!).
          He didn't nurse too well that week, but that didn't surprise anyone.
          But the following week, not only didn't he nurse well --- he totally
          stopped sucking altogether --- at this point they ran another million
          blood tests, etc... no, he's not sick, no we don't know why he
          suddenly stopped sucking!

          At that time they did notice that he *also* has a high arched palate -
          -- which apparantly didn't bother him until then..... I had to
          syringe feed him for the next 2 weeks, he was very weak... finally I
          found a nipple he could use --- wider "bump" at the base (regular
          nipple just shot right out of his mouth, he couldn't grip it -- weak
          facial muscles & high palate together) and a larger hole so he didn't
          have to work too hard. (Currently I am pumping every 3 hours, bottle
          feeding him my milk, supplementing with formula if need be... did I
          mention that I have other kids and that my son is getting married in
          less than 3 weeks????)

          That was when they decided he needed a feeding therapist as well, so
          they rushed it through (that was the week of the IFSP [or whatever
          the initials are] meeting for EI). He got approved for 3x a week PT
          and 3x a week ST(feeding therapy, actually).

          That was also when they referred us to a neurologist.

          Took another 2 mos to get in to see him, he took a whole panel of
          bloodwork, and though he talked a lot, he didn't say much in terms of
          what it might actually be (though he talked at length about a million
          things he didn't think it was...)

          Last week we went back to the neurologist. Thankfully all of the
          genetic testing came back normal as did the muscle enzymes. He now
          wants to take some more tests (nerve/muscle conduction, brain MRI,
          etc.) (We go back to the orthopedist next week, we'll see what he has
          to say about additional testing.) While he did go on mentioning
          another 50 possible diagnoses (none of which did he actually seem to
          think it might be...) he did sort of mention arthrogryposis ---
          *without* saying "...but I don't really think its that..." --- that's
          what leads me to believe that this might be what he's leaning towards
          LOL!

          The pediatrician doesn't know much on the subject. The PT seems to be
          the only one who seems to know anything about anything here (and
          she's concerned enough to be doing research.)

          She feels that the more she researches, the more he seems to fit the
          profile for arthrogryposis. She feels that he should be getting
          orthotics ASAP because his feet (mostly the left one) seems to be
          getting worse (not just turning in, but curved downward, big toe
          pointing down, as well). She also feels that he needs some device to
          hold his hips in "neutral" --- instead of just letting them flop
          outward. (We're working on rigging up up something with a velcro
          strap). She also feels we should be looking ahead to some device to
          hold him standing --- while he can't pick his head up when prone, he
          does have good trunk control when held upright, which she says is
          typical in arthrogryposis.

          So anyway, we seem to be going symptom by symptom here, we have a
          sort of diagnosis and I'm wondering if any of you have any other
          suggestions? Anything else we should be doing? Anyone else we should
          be seeing?

          Again, my apologies for the great length of this post. I hope someone
          can help us out here!

          Thanks,
          Margaret



          Yahoo! Groups SponsorADVERTISEMENT


          ---------------------------------
          Yahoo! Groups Links

          To visit your group on the web, go to:
          http://groups.yahoo.com/group/arthrogryposissupportgroup/

          To unsubscribe from this group, send an email to:
          arthrogryposissupportgroup-unsubscribe@yahoogroups.com

          Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



          ---------------------------------
          Do you Yahoo!?
          Win a $20,000 Career Makeover at Yahoo! HotJobs

          [Non-text portions of this message have been removed]
        • kelli peasley
          Hi Margaret, You sure sound like a typical AMC mom or dad going through the first stages of finding the right hands for your child. We went through so many
          Message 4 of 5 , May 7, 2004
          • 0 Attachment
            Hi Margaret,
            You sure sound like a typical AMC mom or dad going through the first stages of finding the right hands for your child. We went through so many ignorant, arrogent doctors that I cannot even count how many we saw. Finally we have found one doctor 7 hours away for my childs feet, another doctor in a completely different location 5 hours away for his scoliosis, and another one for AMC in general who is 4 hours away, thus this shows you what we have gone through to find the right doctors. This group will be great to lead you down the right path and not make the same mistakes so many of us have due to these often ignorent or overzelus doctors who want to use our children as guine pigs through unnecessary blood work etc. We made the mistake of doing what our neurologist suggested an electro. This was a horrible test. They stick needles that are incredibly thick into different muscles in the child to see how the nerve responds in certain areas. The only use of this test is to find out
            if there is nerve damage done, which is often the case of AMC children. After meeting other neurologists who were much more competent they told me that this test is not needed. You can visually tell often if there is nerve damage. The child often does not have the moores reflex (when the child is about to fall they instantly put there hands out to protect themselves) they usually are not to sensitive to certain types of touching or scratching on the feet or legs, etc. In other words there are many ways to get around doing electros on AMC children. Through PT your therapist through time will also be able to tell if the evolution is slower then usual. They also wanted to do the muscle byopsy when Santiago was first born, luckily we refused, but our doctor was really really insistant on it. I used to not disagree much with doctors I thought they knew it all, but after all my investigating of AMC I believe that most of us on this group know more then they do. You have to stand
            up and tell your doctor when you disagree on something. AMC is rare enough that there is a lot of ignorance in the medical field, thus learn all that you can, there is some great stuff writen about AMC right here in the internet. You will be so much more prepared to deal with this ignorance that you will encounter.
            You mentioned that your child has little flexability on her knees. Santiago also started out with 40 degrees on one and 60 on the other, through intense PT and stretching he now has 100% on both. I know each case is different with AMC and we shouldn�t compare one to the other, but keep the faith and keep up the hard PT, it really does pay off. I was doing stretching 4-5 times a day and a few inbetween for the first 10 months, then Santiago started crawling and his knees took over the work. Now at 2 years old I still do a lot of stetching and movements to increase muscle tone, hoping that he will be able to walk in the next year or so, but not like I had to before. Swimming is also a great thing to look into, it built up his back and his butt muscles a great deal. Keep up the great work Mom, and your child will excel more then you ever imagined. Write me if you have any questions, I too am new to the group but I sure have learned a lot in this short time, wish I had found it
            earlier.
            Take care,
            Kelli and Santiago






            ---------------------------------









            ---------------------------------
            Do you Yahoo!?
            Win a $20,000 Career Makeover at Yahoo! HotJobs

            [Non-text portions of this message have been removed]
          • calprest
            Hi, my name is Carrie and I am the mother of a one year-old girl with AMC. She has contractures mainly in her lower body, but has muscle weakness in her upper
            Message 5 of 5 , Feb 12, 2005
            • 0 Attachment
              Hi, my name is Carrie and I am the mother of a one year-old girl with
              AMC. She has contractures mainly in her lower body, but has muscle
              weakness in her upper body and adducted thumbs. She is going in next
              week to have her first surgery, on her knees and her right foot, which
              is clubbed. She cannot sit unnassisted yet, but her surgeon believes
              she'll be able to walk within the next year or so. Our family lives
              in Wisconsin. I just wanted to introduce myself, and say that I am
              very grateful you are all here.
            Your message has been successfully submitted and would be delivered to recipients shortly.