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

Update of the boys - Not screaming today - Persistent 5th Aortic Arch?

Expand Messages
  • lawblond7@AOL.COM
    Yesterday we took Clay to the new cardiologist at Dc Children s for a second Opinion and at the referral of the hematologist. On a good note Clay s heart
    Message 1 of 20 , Feb 1, 2007
       

      Yesterday we took Clay to the new cardiologist at Dc Children's for a second Opinion and at the referral of the hematologist. On a good note Clay's heart function appears to be normal and working well. He does have an extra aortic arch. Now get this the Dr. we saw is a major researcher now at NIH and only seeing patients one morning a week at DC CHildrens and she and the other cardiologist (head of the echo lab) both said they have never seen before what they saw in Clay - that is what appears to be a persistent 5th aortic arch (but left side dominant - almost always they are right side dominant and then 99.9% they form a vascular ring around the esphagus neccessitating surgery). However, based on the ultrasound they do not believe it is going to need surgery BUT they also cannot be sure as they have never seen this particular defect before - lol. As such he is scheduled for a MRI on February 14th.  In addition, based on this defect and no clue why, how, etc. they have sceduled Cole for an appointment (EKG, Echo) on February 28th. Just my luck they will both have it - hahaha- See - my boys are STRANGE. Clay has something they have never seen before - wonderful and is even more rare than the rare occurence of a double aortic arch. We are doing Cole first rather than Jake as Cole is Clay's twin. We will eventually take Jake to see her too. At least it was nice to have an appointment where we did not get an immediate new diagnosis.  We knew about the extra arch since he was about 2- but it needed to be reaccessed as he gets older.

      She also did say she wanted us to see a pulmonologist to access Clay's lung function.

      As for Jake is not fairing so well with his restricted diet and eating even less than normal. At least he has the tube.

      hugs,
      Sharon. Southern MD (Outside of DC - Chrons) - Mom to 3 wonderful boys - Jake, 13 (gifted, mito, severe ADD with associated mood disorder, FTT - malnourished , EE/EG/EC, G-TUBE, kidney stones & kidney issues, delayed puberty, severe fine motor delays, significant bone age delay. Currently on concerta, risperdal, clondine, prilosec, sodium bicarb, miralax, melatonin and elecare, and now allergic to peanuts, tomatoes, potatoes - white, milk and Latex), and the twins 9 - Cole (ADD - on concerta, FTT and has lost 4 pounds in the last 2 months, spiking fevers, and migraines and he was my NDA child for a long time :( , and most likely mito too) and Clay (mito, FTT, ADHD (on the patch Daytrona) DD, & apparently eos again., post g-tube, fine motor delays, PDD and allergic to peanuts, latex and shellfish and eating most other food now, double aortic arch and internal bleeding issues now - platelet dysfunction of some sort and waiting to find out about the heart issues too)http://www.caringbridge.org/visit/jakeski
    • ilikemonstertrucks
      Ugh... the last thing you want to hear at hte docs is interesting ... Hope the MRI gives them the info they need and he doesnt need surgery! Any news on the
      Message 2 of 20 , Feb 1, 2007
        Ugh... the last thing you want to hear at hte docs
        is 'interesting'...

        Hope the MRI gives them the info they need and he doesnt need
        surgery!

        Any news on the bleedin gissues?




        --- In Mito@yahoogroups.com, lawblond7@... wrote:
        >
        >
        >
        > Yesterday we took Clay to the new cardiologist at Dc Children's
        for a second
        > Opinion and at the referral of the hematologist. On a good note
        Clay's heart
        > function appears to be normal and working well. He does have an
        extra aortic
        > arch. Now get this the Dr. we saw is a major researcher now at NIH
        and only
        > seeing patients one morning a week at DC CHildrens and she and the
        other
        > cardiologist (head of the echo lab) both said they have never seen
        before what
        > they saw in Clay - that is what appears to be a persistent 5th
        aortic arch (but
        > left side dominant - almost always they are right side dominant
        and then
        > 99.9% they form a vascular ring around the esphagus neccessitating
        surgery).
        > However, based on the ultrasound they do not believe it is going
        to need surgery
        > BUT they also cannot be sure as they have never seen this
        particular defect
        > before - lol. As such he is scheduled for a MRI on February 14th.
        In
        > addition, based on this defect and no clue why, how, etc. they
        have sceduled Cole
        > for an appointment (EKG, Echo) on February 28th. Just my luck they
        will both
        > have it - hahaha- See - my boys are STRANGE. Clay has something
        they have never
        > seen before - wonderful and is even more rare than the rare
        occurence of a
        > double aortic arch. We are doing Cole first rather than Jake as
        Cole is Clay's
        > twin. We will eventually take Jake to see her too. At least it was
        nice to
        > have an appointment where we did not get an immediate new
        diagnosis. We knew
        > about the extra arch since he was about 2- but it needed to be
        reaccessed as
        > he gets older.
        > She also did say she wanted us to see a pulmonologist to access
        Clay's lung
        > function.
        > As for Jake is not fairing so well with his restricted diet and
        eating even
        > less than normal. At least he has the tube.
        > hugs,
        > Sharon. Southern MD (Outside of DC - Chrons) - Mom to 3 wonderful
        boys -
        > Jake, 13 (gifted, mito, severe ADD with associated mood disorder,
        FTT -
        > malnourished , EE/EG/EC, G-TUBE, kidney stones & kidney issues,
        delayed puberty,
        > severe fine motor delays, significant bone age delay. Currently on
        concerta,
        > risperdal, clondine, prilosec, sodium bicarb, miralax, melatonin
        and elecare, and
        > now allergic to peanuts, tomatoes, potatoes - white, milk and
        Latex), and
        > the twins 9 - Cole (ADD - on concerta, FTT and has lost 4 pounds
        in the last 2
        > months, spiking fevers, and migraines and he was my NDA child for
        a long time
        > :( , and most likely mito too) and Clay (mito, FTT, ADHD (on the
        patch
        > Daytrona) DD, & apparently eos again., post g-tube, fine motor
        delays, PDD and
        > allergic to peanuts, latex and shellfish and eating most other
        food now, double
        > aortic arch and internal bleeding issues now - platelet
        dysfunction of some
        > sort and waiting to find out about the heart issues
        > too)_http://www.caringbridge.org/visit/jakeski_
        (http://www.caringbridge.org/visit/jakeski)
        >
      • Jenna
        things I hate hearing from doctors: she s a puzzle I m not really sure what to do about that I ve never seen a kid like her before does her heart always
        Message 3 of 20 , Feb 1, 2007
          things I hate hearing from doctors:

          "she's a puzzle"
          "I'm not really sure what to do about that"
          "I've never seen a kid like her before"
          "does her heart always beat like that?"
          "well it must be working for her becuase she's still here (aka not
          dead)"
          "mildly abnormal" (enough to conern you, not enough to diagnose)
          "cyanosis is not an issue as long as her lips regain color in a few
          minutes"
          "you need to talk to neurology about it" meanwhile neuro. says "you
          need to go talk to {insert pervious dept} about it"
          "that really concern me" (with no plan of action or answers)
        • karen brubaker
          I hear you on that! We should turn the tables on them and ask them if it were their child and the doctor was saying that to them what would they do? Would
          Message 4 of 20 , Feb 1, 2007
            I hear you on that!  We should turn the tables on them and ask them if it were their child and the doctor was saying that to them what would they do? Would they demand answers or would they want a more thoughtful answer like " I really am not understanding what is going on with your child but i am going to consult with another specialist and see what we come up with" at least then it appears they are trying to be proactive in our childrens care. Granted I know our children can throw them for a loop but they need to put themselves in the parents shoes before they say anything.
             
            Okay down from the soapboxLOL.
             
            Jenna, I hope you can get some direction as to what is going on woth your daughter. You are in my prayers.
            Karen

            Jenna <sjkassis503@...> wrote:
            things I hate hearing from doctors:

            "she's a puzzle"
            "I'm not really sure what to do about that"
            "I've never seen a kid like her before"
            "does her heart always beat like that?"
            "well it must be working for her becuase she's still here (aka not
            dead)"
            "mildly abnormal" (enough to conern you, not enough to diagnose)
            "cyanosis is not an issue as long as her lips regain color in a few
            minutes"
            "you need to talk to neurology about it" meanwhile neuro. says "you
            need to go talk to {insert pervious dept} about it"
            "that really concern me" (with no plan of action or answers)




            Karen, Ryan 17 asthma, coq10 deficiency probable mito, Justin 8 Complex IV
             


            Never miss an email again!
            Yahoo! Toolbar
            alerts you the instant new Mail arrives. Check it out.

          • Mom24wildboys
            I agree. I can add: looks so good though. is a difficult case. Shelly
            Message 5 of 20 , Feb 1, 2007
              I agree.
              I can add:
              ' looks so good though.'
              'is a difficult case.'


              Shelly


              On Feb 1, 2007, at 11:07 AM, Jenna wrote:

              things I hate hearing from doctors:

              "she's a puzzle"
              "I'm not really sure what to do about that"
              "I've never seen a kid like her before"
              "does her heart always beat like that?"
              "well it must be working for her becuase she's still here (aka not
              dead)"
              "mildly abnormal" (enough to conern you, not enough to diagnose)
              "cyanosis is not an issue as long as her lips regain color in a few
              minutes"
              "you need to talk to neurology about it" meanwhile neuro. says "you
              need to go talk to {insert pervious dept} about it"
              "that really concern me" (with no plan of action or answers)


            • uzma butt
              He s doing so well under the circumstances.... He s extremely rare. Is it a seizure? Don t know what they look like!!! Uzma Safiyah (3.5), Hussan 10 months
              Message 6 of 20 , Feb 1, 2007
                He's doing so well under the circumstances....
                He's extremely rare.
                Is it a seizure? Don't know what they look like!!!
                 
                Uzma
                 
                Safiyah (3.5), Hussan 10 months undiagnosed

                karen brubaker <karenbrbkr@...> wrote:
                I hear you on that!  We should turn the tables on them and ask them if it were their child and the doctor was saying that to them what would they do? Would they demand answers or would they want a more thoughtful answer like " I really am not understanding what is going on with your child but i am going to consult with another specialist and see what we come up with" at least then it appears they are trying to be proactive in our childrens care. Granted I know our children can throw them for a loop but they need to put themselves in the parents shoes before they say anything.
                 
                Okay down from the soapboxLOL.
                 
                Jenna, I hope you can get some direction as to what is going on woth your daughter. You are in my prayers.
                Karen

                Jenna <sjkassis503@ yahoo.com> wrote:
                things I hate hearing from doctors:

                "she's a puzzle"
                "I'm not really sure what to do about that"
                "I've never seen a kid like her before"
                "does her heart always beat like that?"
                "well it must be working for her becuase she's still here (aka not
                dead)"
                "mildly abnormal" (enough to conern you, not enough to diagnose)
                "cyanosis is not an issue as long as her lips regain color in a few
                minutes"
                "you need to talk to neurology about it" meanwhile neuro. says "you
                need to go talk to {insert pervious dept} about it"
                "that really concern me" (with no plan of action or answers)




                Karen, Ryan 17 asthma, coq10 deficiency probable mito, Justin 8 Complex IV
                 

                Never miss an email again!
                Yahoo! Toolbar
                alerts you the instant new Mail arrives. Check it out.


                New Yahoo! Mail is the ultimate force in competitive emailing. Find out more at the Yahoo! Mail Championships. Plus: play games and win prizes.

              • cuznj@juno.com
                AMEN and DITTO for me!!! Jane
                Message 7 of 20 , Feb 1, 2007

                  AMEN and DITTO for me!!!

                  Jane

                • Jenna
                  definately well she looks good and I want to say yah she does right now..except for when she s looking and acting really sick for no reason...I think
                  Message 8 of 20 , Feb 1, 2007
                    definately "well she looks good" and I want to say yah she does
                    right now..except for when she's looking and acting really sick for
                    no reason...I think smetiems they know how sick our kids really are
                    but want to try to be "reassuring" (especially since they don't have
                    any clue about how to help)- maybe not everyoe feels this way but
                    I'm much rather just hear it how it is.

                    --- In Mito@yahoogroups.com, Mom24wildboys <mom24wildboys@...> wrote:
                    >
                    > I agree.
                    > I can add:
                    > ' looks so good though.'
                    > 'is a difficult case.'
                    >
                    >
                    > Shelly
                    >
                    >
                    > On Feb 1, 2007, at 11:07 AM, Jenna wrote:
                    >
                    > > things I hate hearing from doctors:
                    > >
                    > > "she's a puzzle"
                    > > "I'm not really sure what to do about that"
                    > > "I've never seen a kid like her before"
                    > > "does her heart always beat like that?"
                    > > "well it must be working for her becuase she's still here (aka
                    not
                    > > dead)"
                    > > "mildly abnormal" (enough to conern you, not enough to diagnose)
                    > > "cyanosis is not an issue as long as her lips regain color in a
                    few
                    > > minutes"
                    > > "you need to talk to neurology about it" meanwhile neuro.
                    says "you
                    > > need to go talk to {insert pervious dept} about it"
                    > > "that really concern me" (with no plan of action or answers)
                    > >
                    > >
                    > >
                    >
                  • elicia rivera
                    my docs want me to rember when and what blood test are needed and when and what doc. she needs to see so I go to the pedi and they ask me what needs to be done
                    Message 9 of 20 , Feb 1, 2007
                      my docs want me to rember when and what blood test are needed and when and what doc. she needs to see so I go to the pedi and they ask me what needs to be done and then i have to call her neuo to give hime the results and if something is not right he wants me to ask the genetics clinic what to do she is a medicaid paitent so shoffner dont follow her so it is up to me

                      Jenna <sjkassis503@...> wrote:
                      things I hate hearing from doctors:

                      "she's a puzzle"
                      "I'm not really sure what to do about that"
                      "I've never seen a kid like her before"
                      "does her heart always beat like that?"
                      "well it must be working for her becuase she's still here (aka not
                      dead)"
                      "mildly abnormal" (enough to conern you, not enough to diagnose)
                      "cyanosis is not an issue as long as her lips regain color in a few
                      minutes"
                      "you need to talk to neurology about it" meanwhile neuro. says "you
                      need to go talk to {insert pervious dept} about it"
                      "that really concern me" (with no plan of action or answers)



                      Have a burning question? Go to Yahoo! Answers and get answers from real people who know.

                    • elicia rivera
                      my docs want me to rember when and what blood test are needed and when and what doc. she needs to see so I go to the pedi and they ask me what needs to be done
                      Message 10 of 20 , Feb 1, 2007
                        my docs want me to rember when and what blood test are needed and when and what doc. she needs to see so I go to the pedi and they ask me what needs to be done and then i have to call her neuo to give hime the results and if something is not right he wants me to ask the genetics clinic what to do she is a medicaid paitent so shoffner dont follow her so it is up to me

                        Jenna <sjkassis503@...> wrote:
                        things I hate hearing from doctors:

                        "she's a puzzle"
                        "I'm not really sure what to do about that"
                        "I've never seen a kid like her before"
                        "does her heart always beat like that?"
                        "well it must be working for her becuase she's still here (aka not
                        dead)"
                        "mildly abnormal" (enough to conern you, not enough to diagnose)
                        "cyanosis is not an issue as long as her lips regain color in a few
                        minutes"
                        "you need to talk to neurology about it" meanwhile neuro. says "you
                        need to go talk to {insert pervious dept} about it"
                        "that really concern me" (with no plan of action or answers)



                        Now that's room service! Choose from over 150,000 hotels
                        in 45,000 destinations on Yahoo! Travel
                        to find your fit.

                      • oldevillage2003
                        It s so nice to know that we are not the only ones who deal with this... she looks great is one of the most annoying ones and passing the buck to another
                        Message 11 of 20 , Feb 1, 2007
                          It's so nice to know that we are not the only ones who deal with
                          this..."she looks great" is one of the most annoying ones and passing
                          the buck to another doctor is a close second...what can we do about
                          it?

                          --- In Mito@yahoogroups.com, "Jenna" <sjkassis503@...> wrote:
                          >
                          > things I hate hearing from doctors:
                          >
                          > "she's a puzzle"
                          > "I'm not really sure what to do about that"
                          > "I've never seen a kid like her before"
                          > "does her heart always beat like that?"
                          > "well it must be working for her becuase she's still here (aka not
                          > dead)"
                          > "mildly abnormal" (enough to conern you, not enough to diagnose)
                          > "cyanosis is not an issue as long as her lips regain color in a few
                          > minutes"
                          > "you need to talk to neurology about it" meanwhile neuro. says "you
                          > need to go talk to {insert pervious dept} about it"
                          > "that really concern me" (with no plan of action or answers)
                          >
                        • Becca Loscar
                          when we were trying to get Jennifer diagnosed I hated hearing There is something wrong but its not in my area Now its the She looks so good or just the
                          Message 12 of 20 , Feb 1, 2007
                            when we were trying to get Jennifer diagnosed I hated hearing
                            "There is something wrong but  its not in my area"
                            Now its the  "She looks so good" or just the opposite "Does she always do that?"
                            She always falls asleep in the dr office
                            Becca
                            ----- Original Message -----
                            Sent: Thursday, February 01, 2007 5:05 PM
                            Subject: [Mito] Re: comments I hate hearing from docs

                            It's so nice to know that we are not the only ones who deal with
                            this..."she looks great" is one of the most annoying ones and passing
                            the buck to another doctor is a close second...what can we do about
                            it?

                            --- In Mito@yahoogroups. com, "Jenna" <sjkassis503@ ...> wrote:
                            >
                            > things I hate hearing from doctors:
                            >
                            > "she's a puzzle"
                            > "I'm not really sure what to do about that"
                            > "I've never seen a kid like her before"
                            > "does her heart always beat like that?"
                            > "well it must be working for her becuase she's still here (aka not
                            > dead)"
                            > "mildly abnormal" (enough to conern you, not enough to diagnose)
                            > "cyanosis is not an issue as long as her lips regain color in a few
                            > minutes"
                            > "you need to talk to neurology about it" meanwhile neuro. says "you
                            > need to go talk to {insert pervious dept} about it"
                            > "that really concern me" (with no plan of action or answers)
                            >

                          • slpwoman@aol.com
                            Wow-that list made me laugh because it hit so close to home, with Rina sick I think I have heard almost all of those in the last 2 weeks. stacy
                            Message 13 of 20 , Feb 1, 2007
                              Wow-that list made me laugh because it hit so close to home, with Rina sick I think I have heard almost all of those in the last 2 weeks. stacy
                            • Meagan
                              I have to second all of those. I hate being sent in a complete circle from one specialist to the next because no one wants to be responsible for handling her
                              Message 14 of 20 , Feb 1, 2007
                                I have to second all of those.  I hate being sent in a complete circle from one specialist to the next because no one wants to be responsible for handling her care or knows what to do. 

                                slpwoman@... wrote:
                                Wow-that list made me laugh because it hit so close to home, with Rina sick I think I have heard almost all of those in the last 2 weeks. stacy



                                Meagan, mom to Sophia, 2, Complex I, III, & IV deficiencies  www.caringbridge.org/ky/sophiesong
                                 


                                Don't be flakey. Get Yahoo! Mail for Mobile and
                                always stay connected to friends.

                              • Garcie74@aol.com
                                This made me laugh because I think I have heard all of these comments from Drs also. The best was after she spent 3 months in the NICU doing tests, the
                                Message 15 of 20 , Feb 1, 2007
                                  This made me laugh because I think I have heard all of these comments from Drs also.  The best was after she spent 3 months in the NICU doing tests, the attending finally said "well, Kayla is just a mystery to us".  I have also been told may times by her neurologist that I need to discuss her central apnea with pulmonary because its related to her lungs, but pulmonary says since it is central apnea, its related to her brain, so I need to talk to Neurology. 
                                   
                                  Also, every test she has always seems to be abnormal, but not abnormal enough to be conclusive. 
                                   
                                  My favorite Drs appt was when I was talking about all of the frustrations I have with her not sleeping at night and another Dr. came in and asked what time she usually goes to sleep and I said about 2am and the Dr. looked at me horrified and said that I should be putting her to bed by 8pm because that is the time that most kids her age are asleep by.  Duh, do you think I am keeping her up until 2 on purpose?
                                   
                                  Dawn, mom to Kayla
                                   
                                   
                                   
                                  -----Original Message-----
                                  From: sjkassis503@...
                                  To: Mito@yahoogroups.com
                                  Sent: Thu, 1 Feb 2007 2:07 PM
                                  Subject: [Mito] comments I hate hearing from docs

                                  things I hate hearing from doctors:

                                  "she's a puzzle"
                                  "I'm not really sure what to do about that"
                                  "I've never seen a kid like her before"
                                  "does her heart always beat like that?"
                                  "well it must be working for her becuase she's still here (aka not
                                  dead)"
                                  "mildly abnormal" (enough to conern you, not enough to diagnose)
                                  "cyanosis is not an issue as long as her lips regain color in a few
                                  minutes"
                                  "you need to talk to neurology about it" meanwhile neuro. says "you
                                  need to go talk to {insert pervious dept} about it"
                                  "that really concern me" (with no plan of action or answers)


                                  Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more.
                                • Darla Klein
                                  Most hated common statement is, My how good she looks! and you are shaking your head inside thinking how pale she looks and how the circles under the eyes
                                  Message 16 of 20 , Feb 1, 2007
                                    Most hated common statement is, "My how good she looks!" and you are
                                    shaking your head inside thinking how pale she looks and how the circles
                                    under the eyes show up and how much better they looked just the week before,
                                    but the doc just seems oblivious to the fact, and of course they didn't see
                                    her last week to be able to compare.
                                    How about, "I just want to thank you for having such a complex little
                                    girl that I get the chance to work with as I have never been able to deal
                                    with these issues before." And I am thinking, THANK YOU? What an insult.
                                    This is my child not an experiment you get to pay with and she is the one
                                    fighting for her life.
                                    Another one: "If we give her meds for the head pain, we won't know if
                                    she is about to die!!!" Duh! What about blood pressure, respiratory
                                    changes, sat drops, mental statue changes, etc. etc. and also how dare they
                                    say that to the child's own mom!


                                    www.caringbridge.org/ia/mitomomof9
                                    www.heartbeatsformito.org (Behind the Smiles photo essay)
                                    Darla(ATP1A2 FHM/Mito): mommy to
                                    Asenath (6)-ATP1A2 Familial Hemiplegic Migraine (FHM) with Mitochondrial
                                    dysfunction, CNS Vasculitis, strokes, migraines, seizures, G-tube, dev.
                                    delays...
                                    Zipporrah (3)- ATP1A2 FHM with Mitochondrial dysfunction, strokes,
                                    migraines, G-tube, dumping syndrome, dev. delays, seizures...
                                    Luke (18)-assumed ATP1A2 FHM, SLE's- (Army guy at Fort Benning-Atlanta,
                                    Georgia)
                                    Leah (16)-ATP1A2 FHM, overall healthy
                                    Rachael (15)-ATP1A2 FHM, right-sided Strokes
                                    Isaac (12)-muscle pain, major fatigue
                                    Tirzah (10)-past bone marrow suppression, eye issues, fatigue
                                    Kezia (6)-overall healthy, leg braces and speech issues...
                                    Marquis (5)-drug affects (mostly behavioral) from birth mom
                                    Christina (3)-Mild CP, seizures, dev. delays
                                    Joseph (3)-Severe CP, hydrocephalus w/ shunt, G-tube, wheelchair, dev.
                                    delays, hip issues, a wee-bit verbal but a smarty!
                                    www.caringbridge.org/visit/joeyklein
                                  • Jenna
                                    How about, I just want to thank you for having such a complex little girl that I get the chance to work with as I have never been able to deal with these
                                    Message 17 of 20 , Feb 1, 2007
                                      How about, "I just want to thank you for having such a complex little
                                      girl that I get the chance to work with as I have never been able to
                                      deal
                                      with these issues before."

                                      Darla-
                                      or similarly at a teaching hospital like we are at it's unspoken but
                                      I can see it in the resident's' eyes especially "oh boy we're going
                                      to get to write a paper and get published about all the strange
                                      stuff" it's a kid not an "interesting case to write a paper
                                      on"...my daughter's not an animal in the zoo
                                      but in doctor's defense...they have to deal with seeing so many very
                                      sick children...they're sometimes just trying to make it through the
                                      day and if they saw the heartache of every case and didn't distance
                                      themselves and try to state the positive for their own sake, we'd
                                      have many fewer docs I believe

                                      rambling..need to go to bed...mom came to watch Rachel whose been
                                      having a lot of pain today even so it's hard for her to even
                                      sleep...if continues tomorrow may be heading to the big H again

                                      jenna
                                    • Kelly-Ann
                                      What a great topic --on eve of a new neuro appointment! LOL I do know NEW NEURO has seen alot of challenging cases, icluding several Mito....but there s the
                                      Message 18 of 20 , Feb 1, 2007
                                        What a great topic --on eve of a new neuro appointment! LOL I do know
                                        NEW NEURO has seen alot of challenging cases, icluding several
                                        Mito....but there's the "cloud" that follows us too. We don't quite fit
                                        usual molds...but then life would be boring! Can't have that!

                                        Kelly-Ann
                                      • Jen Clifton
                                        We get the he looks so good all the time. We also go to a teaching hospital for most of Connor s specialist appointments and the students that are there
                                        Message 19 of 20 , Feb 2, 2007
                                          We get the "he looks so good" all the time.
                                           
                                          We also go to a teaching hospital for most of Connor's specialist appointments and the students that are there getting there fellowship in genetics all love reading his charts. They just stand there and read and read and read. Then you see them look at Connor and go back to reading. I never really worry about it since I figure they are learning about mito, which could someday help another child, but you can see the puzzled look on their faces.
                                           
                                          We have also gotten "I am not sure what to do about that and need to speak with some of my partners to see what they would recommend". I really hated that one.
                                           
                                          Jen
                                          -Donny (7)
                                          -Mason (5)
                                          -Connor (2) Leigh's Syndrome
                                          www.caringbridge.org/visit/connorscott
                                           
                                          ----- Original Message -----
                                          Sent: Thursday, February 01, 2007 5:05 PM
                                          Subject: [Mito] Re: comments I hate hearing from docs

                                          It's so nice to know that we are not the only ones who deal with
                                          this..."she looks great" is one of the most annoying ones and passing
                                          the buck to another doctor is a close second...what can we do about
                                          it?

                                          --- In Mito@yahoogroups. com, "Jenna" <sjkassis503@ ...> wrote:
                                          >
                                          > things I hate hearing from doctors:
                                          >
                                          > "she's a puzzle"
                                          > "I'm not really sure what to do about that"
                                          > "I've never seen a kid like her before"
                                          > "does her heart always beat like that?"
                                          > "well it must be working for her becuase she's still here (aka not
                                          > dead)"
                                          > "mildly abnormal" (enough to conern you, not enough to diagnose)
                                          > "cyanosis is not an issue as long as her lips regain color in a few
                                          > minutes"
                                          > "you need to talk to neurology about it" meanwhile neuro. says "you
                                          > need to go talk to {insert pervious dept} about it"
                                          > "that really concern me" (with no plan of action or answers)
                                          >

                                        • karen_earlywine1@bellsouth.net
                                          i certainly agree
                                          Message 20 of 20 , Feb 2, 2007
                                            i certainly agree
                                            >
                                            > From: "Jenna" <sjkassis503@...>
                                            > Date: 2007/02/01 Thu PM 02:07:58 EST
                                            > To: Mito@yahoogroups.com
                                            > Subject: [Mito] comments I hate hearing from docs
                                            >
                                            > things I hate hearing from doctors:
                                            >
                                            > "she's a puzzle"
                                            > "I'm not really sure what to do about that"
                                            > "I've never seen a kid like her before"
                                            > "does her heart always beat like that?"
                                            > "well it must be working for her becuase she's still here (aka not
                                            > dead)"
                                            > "mildly abnormal" (enough to conern you, not enough to diagnose)
                                            > "cyanosis is not an issue as long as her lips regain color in a few
                                            > minutes"
                                            > "you need to talk to neurology about it" meanwhile neuro. says "you
                                            > need to go talk to {insert pervious dept} about it"
                                            > "that really concern me" (with no plan of action or answers)
                                            >
                                            >
                                            >
                                            >
                                            >
                                          Your message has been successfully submitted and would be delivered to recipients shortly.