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Thyroid

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  • Julia31528@aol.com
    Do any of your kids have thyroid problems? Is it part of their mito or separate? How about a specific thyroid disease called Selective Pituitary Thyroid
    Message 1 of 26 , Oct 1, 2002
      Do any of your kids have thyroid problems? Is it part of their mito or
      separate? How about a specific thyroid disease called "Selective
      Pituitary Thyroid Hormone Resistance" or "Thyroid Hormone Resistance"?

      We knew Emilie had antibodies to thyroid, so an endocrinologist has been
      following her. Now her latest blood work indicates she might have this
      rare genetic disorder. They are going to repeat her tests in six months
      and see what things look like then.

      If there was a silver lining to Emilie being diagnosed with mito earlier
      this month, it was that sense of relief that at least we finally knew
      what was going on and could quit trying to figure it out and, hopefully,
      get on with finding a way to make her feel better. Now I'm confused
      again about what's causing which symptoms and how it all fits together.
      Sigh!



      Julia -- Mom to:
      Emilie (16), mito--complex IV, cp, ld
      Kaitlin (16), cp, asthma, a few autonomic symptoms
      Ian (20) migraines
      ...and wife to Tim, who has a heart of gold
    • Jeannine and Curtis Sawyer
      Julia, This is just my opinion, but I think there seems to be a greater incidence of pituitary dysfunction, or endocrine problems (with the exception of
      Message 2 of 26 , Oct 1, 2002
        Julia,

        This is just my opinion, but I think there seems to be a greater
        incidence of pituitary dysfunction, or endocrine problems (with the
        exception of diabetes) with complex IV.

        It seems that the only other families that I have heard of, that have
        panhypopituitarism, or any significant type of pituitary dysfunction are
        complex IV. Could just be a coincidence, but it sure seems strange.
        Especially when we've been told that this type of pituitary dysfunction
        is not that common with mito. Certainly pituitary dysfunction can be
        impacted by mitochondrial disease and energy shortage, because the
        pituitary requires a large amount of energy. It is also known as
        "unforgiving", in that, when there is an injury or insult to the
        pituitary it rarely recovers, unlike other organs and glands.

        Both of my girls, and myself have some degree of pituitary dysfunction
        and both are growth hormone deficient. My youngest has what is known as
        panhypopituitarism. The pituitary is the master gland and helps control
        the other glands. But in her case, it does not do it's job and we have
        to supplement with replacement hormones, all the things that the
        pituitary would normally tell her body to do. She takes several
        hormones to replace what she is not producing.

        On the other hand there is also a type of hypothyroidism that occurs
        when the body's own immune system produces antibodies and attacks the
        thyroid gland. Autoimmune disease also comes with mitochondrial
        disease, and I actually think this type of hypothyroidism may be a
        little more common than the other. The fact that she has thyroid
        antibodies makes me wonder if she fits into the second category rather
        than the first. Does she have any other endocrine symptoms?

        As far as your confusion, and the silver lining. It is nice to have a
        name, a diagnosis, but in our experience, the investigating, and
        challenge continues on a daily basis, to try to find out what's going
        on. As time goes on, we do have more clues, but just about the time we
        think we have everything figured out, and things are stable, something
        else crops up. It is frustrating, but history tells me that we'll get
        through, as we always have gotten to the bottom of things before.

        Good luck,
        Jeannine
      • waislandgirl@aol.com
        In a message dated 10/1/02 5:59:12 AM Pacific Daylight Time, sawyerjc@cox-internet.com writes:
        Message 3 of 26 , Oct 1, 2002
          In a message dated 10/1/02 5:59:12 AM Pacific Daylight Time,
          sawyerjc@... writes:

          << On the other hand there is also a type of hypothyroidism that occurs
          when the body's own immune system produces antibodies and attacks the
          thyroid gland. Autoimmune disease also comes with mitochondrial
          disease, and I actually think this type of hypothyroidism may be a
          little more common than the other. >>

          Interesting that I have that-it's called Hashimoto's thyroid disease.

          Dena
        • LMelby1000@aol.com
          Julia, My 6 year old son Lucas developed hypothyroidism due to pitiuitary malfunction at the age of 4. Lucas had a frozen biopsy that was suggestive of mito
          Message 4 of 26 , Oct 1, 2002
            Julia,
                   My 6 year old son Lucas developed hypothyroidism due to pitiuitary malfunction at the age of 4.  Lucas had a frozen biopsy that was suggestive of mito disorder but no definite confirmation.  At the same time he developed severe reflux and is now J-tube fed.  Prior to that he was a complete oral eater.  The hypothyroidism is actually one of our stronger reasons that we feel he leans more to a mito diagnosis.  Prior to this the metabolic doctor felt he was just developmentally delayed possibly more apt to be a mild variation of some other symptom.  An excellent website i recently discovered regarding thyroid issues is www.thyroid-info.com.  I also am hypothyroid and really would like to know if their is some connection with it and Lucas' problems.  Hope this helps, Loriann (mom of 3 boys)
          • Julia31528@aol.com
            ... Me, too. Hmm. Julia -- Mom to: Emilie (16), mito--complex IV, cp, ld Kaitlin (16), cp, asthma, a few autonomic symptoms Ian (20) migraines ...and wife to
            Message 5 of 26 , Oct 1, 2002
              >Interesting that I have that-it's called Hashimoto's thyroid disease.

              Me, too. Hmm.

              Julia -- Mom to:
              Emilie (16), mito--complex IV, cp, ld
              Kaitlin (16), cp, asthma, a few autonomic symptoms
              Ian (20) migraines
              ...and wife to Tim, who has a heart of gold
            • Julia31528@aol.com
              Jeannine, Thanks for your reply. That s really interesting about complex IV. I take it your girls have complex IV?? ... We ve known she had antibodies for a
              Message 6 of 26 , Oct 1, 2002
                Jeannine,

                Thanks for your reply. That's really interesting about complex IV. I
                take it your girls have complex IV??

                >On the other hand there is also a type of hypothyroidism that occurs
                >when the body's own immune system produces antibodies and attacks the
                >thyroid gland. Autoimmune disease also comes with mitochondrial
                >disease, and I actually think this type of hypothyroidism may be a
                >little more common than the other. The fact that she has thyroid
                >antibodies makes me wonder if she fits into the second category rather
                >than the first. Does she have any other endocrine symptoms?

                We've known she had antibodies for a couple of years, but she's never
                tested either hypothyroid or hyperthyroid. What brought up this new
                possibility is that her recent bloodwork showed elevated free T3 and
                total T3 (for the first time), but normal TSH and T4. Apparently, it's
                unusual to see the elevated T3 with a normal TSH, and that's enough to
                make the doctor suspicious of the thyroid hormone resistance.

                Not sure what you mean by endocrine symptoms. I did look at the symptoms
                last night for hypothyroidism and hyperthyroidism, and she's got both.
                Good trick. :) But then, the symptoms are also mito symptoms, like
                heat intolerance, cold interolerance, fatigue, so it's hard to say what's
                from what.

                >As far as your confusion, and the silver lining. It is nice to have a
                >name, a diagnosis, but in our experience, the investigating, and
                >challenge continues on a daily basis, to try to find out what's going
                >on. As time goes on, we do have more clues, but just about the time we
                >think we have everything figured out, and things are stable, something
                >else crops up. It is frustrating, but history tells me that we'll get
                >through, as we always have gotten to the bottom of things before.

                Good point. I guess I thought we were done with the diagnosing part, at
                least, but I can see where there will always be challenges, especially
                since Emilie continues to add symptoms.
                >
                Take care,

                Julia -- Mom to:
                Emilie (16), mito--complex IV, cp, ld
                Kaitlin (16), cp, asthma, a few autonomic symptoms
                Ian (20) migraines
                ...and wife to Tim, who has a heart of gold
              • waislandgirl@aol.com
                ... Since being diagnosed 7 years ago, I ve had to have periodic increases in Synthroid dosage, now taking 0.2 mg daily. Dena
                Message 7 of 26 , Oct 1, 2002
                  In a message dated Tue, 1 Oct 2002 3:17:09 PM Eastern Standard Time, juhlmann@... writes:

                  > I sure hope they do not become thyroid hormone resistant
                  > too.

                  Since being diagnosed 7 years ago, I've had to have periodic increases in Synthroid dosage, now taking 0.2 mg daily.

                  Dena
                • Anne K Juhlmann
                  Julia, Interesting! Zach and Sam also have pan hypopituitary disease and get many hormones replaced, including thyroid hormone. They too have had high free T3
                  Message 8 of 26 , Oct 1, 2002
                    Julia,
                    Interesting! Zach and Sam also have pan hypopituitary disease and get many
                    hormones replaced, including thyroid hormone. They too have had high free T3
                    levels and low-normal Free T4 and low TSH. (low TSH is common when
                    hypothyroidism is caused by pituitary dysfunction - it means the pituitary
                    is not stimulating the thyroid to make thyroid hormone anymore).

                    Their reverse T3 is normal. As I understand it T4 has to be converted into
                    T3 and if the body is becoming resistant then it will kick it back and the
                    T3 drops and the reverse T3 increases. So it is interesting to me that what
                    you are hearing is that a high T3 = resistance.

                    I asked our endo why the High Free T3 and he said it is odd but he think it
                    has to do with variations in protein binding. (HUH? is what I said). We are
                    seeing him in a few weeks so I will get a better explanation and let you
                    know. Zach and Sam have are well on their way to being Growth hormone
                    resistant - I sure hope they do not become thyroid hormone resistant too.

                    Anne
                    ----- Original Message -----
                    From: <Julia31528@...>
                    To: <Mito@yahoogroups.com>
                    >
                    > We've known she had antibodies for a couple of years, but she's never
                    > tested either hypothyroid or hyperthyroid. What brought up this new
                    > possibility is that her recent bloodwork showed elevated free T3 and
                    > total T3 (for the first time), but normal TSH and T4. Apparently, it's
                    > unusual to see the elevated T3 with a normal TSH, and that's enough to
                    > make the doctor suspicious of the thyroid hormone resistance.
                  • Jeannine and Curtis Sawyer
                    ... Yes, the middle one was actually diagnosed when she was a toddler with Dysautonomia, and referred to NYC, but my youngest was biopsied by Dr. Shoffner, and
                    Message 9 of 26 , Oct 1, 2002
                      Julia31528@... wrote:

                      > That's really interesting about complex IV. I
                      > take it your girls have complex IV??

                      Yes, the middle one was actually diagnosed when she was a toddler with
                      Dysautonomia, and referred to NYC, but my youngest was biopsied by Dr.
                      Shoffner, and dx'd with Complex IV. Dr. Shoffner felt after reviewing
                      all three of the kids records that they all had a complex IV deficiency.

                      Jeannine
                    • Julia31528@aol.com
                      ... One of Emilie s pre-mito diagnoses was dysautonomia. Sounds like our girls have a fair amount in common. Julia -- Mom to: Emilie (16), mito--complex IV,
                      Message 10 of 26 , Oct 1, 2002
                        >Yes, the middle one was actually diagnosed when she was a toddler with
                        >Dysautonomia, and referred to NYC, but my youngest was biopsied by Dr.
                        >Shoffner, and dx'd with Complex IV. Dr. Shoffner felt after reviewing
                        >all three of the kids records that they all had a complex IV deficiency.
                        >
                        One of Emilie's pre-mito diagnoses was dysautonomia. Sounds like our
                        girls have a fair amount in common.



                        Julia -- Mom to:
                        Emilie (16), mito--complex IV, cp, ld
                        Kaitlin (16), cp, asthma, a few autonomic symptoms
                        Ian (20) migraines
                        ...and wife to Tim, who has a heart of gold
                      • Julia31528@aol.com
                        Anne, ... What I understand the doctor said is significant is not that the T3 is high but that it s high in conjunction with a normal TSH. So, I don t think
                        Message 11 of 26 , Oct 1, 2002
                          Anne,

                          >So it is interesting to me that what
                          >you are hearing is that a high T3 = resistance.

                          What I understand the doctor said is significant is not that the T3 is
                          high but that it's high in conjunction with a normal TSH. So, I don't
                          think he's exactly saying "T3 = resistance", but "T3 + normal TSH =
                          possible resistance". But why would a resistance syndrome mean she would
                          be hyperthyroid rather than hypo (he said he would treat for
                          hyperthyroidism)? Boy, am I clueless on this thyroid stuff!
                          >
                          >I asked our endo why the High Free T3 and he said it is odd but he think it
                          >has to do with variations in protein binding. (HUH? is what I said). We are
                          >seeing him in a few weeks so I will get a better explanation and let you
                          >know.

                          Great! Thanks! I'm with you on the protein binding...huh?! :)

                          BTW, Emilie's twin's thyroid tests are back now, too. Her free T3 isn't
                          above normal, but it is in the high end of normal. So now the doctor is
                          wondering about her, too, and is talking about doing a radioactive test.
                          Anyone know what the test might show--sorry, can't remember the exact
                          name.

                          BTW, do Zach and Sam have Complex IV?

                          Thanks for sharing!




                          Julia -- Mom to:
                          Emilie (16), mito--complex IV, cp, ld
                          Kaitlin (16), cp, asthma, a few autonomic symptoms
                          Ian (20) migraines
                          ...and wife to Tim, who has a heart of gold
                        • Anne K Juhlmann
                          Julia: Yes, Zach and Sam do have complex 4 - less than 5% functions. They also have 0 complex 1. Like Emilie they have dysautonomia - in Sam it is very
                          Message 12 of 26 , Oct 1, 2002
                            Julia:
                            Yes, Zach and Sam do have complex 4 - less than 5% functions. They also
                            have 0 complex 1. Like Emilie they have dysautonomia - in Sam it is very
                            significant & getting very scary. I wish there were better ways to treat it.
                            Anne


                            ----- Original Message -----
                            From: <Julia31528@...>
                            To: <Mito@yahoogroups.com>
                            Sent: Tuesday, October 01, 2002 6:30 PM
                            Subject: Re: Re: Re: [Mito] Thyroid

                            > BTW, do Zach and Sam have Complex IV?
                            >
                            > Thanks for sharing!
                            >
                            >
                            >
                            >
                            > Julia -- Mom to:
                            > Emilie (16), mito--complex IV, cp, ld
                            > Kaitlin (16), cp, asthma, a few autonomic symptoms
                            > Ian (20) migraines
                            > ...and wife to Tim, who has a heart of gold
                            >
                            >
                            >
                            >
                            > Please contact mito-owner@yahoogroups.com with any problems or questions.
                            >
                            > Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
                            >
                            >
                            >
                          • Julia31528@aol.com
                            Anne, ... What kinds of things does Sam have with his dysautonomia that are of concern? Emilie has tachycardia, but some of the other symptoms she has are
                            Message 13 of 26 , Oct 2, 2002
                              Anne,

                              > Like Emilie they have dysautonomia - in Sam it is very
                              >significant & getting very scary. I wish there were better ways to treat it.

                              What kinds of things does Sam have with his dysautonomia that are of
                              concern? Emilie has tachycardia, but some of the other symptoms she has
                              are more of a nuisance or even a curiosity--like her hands turning purple
                              after she eats a meal. I've wondered for a while what serious
                              implications there are with dysautonomia.

                              Do they try to treat the dysautonomia at all in your boys?

                              Thanks,

                              Julia -- Mom to:
                              Emilie (16), mito--complex IV, cp, ld
                              Kaitlin (16), cp, asthma, a few autonomic symptoms
                              Ian (20) migraines
                              ...and wife to Tim, who has a heart of gold
                            • Anne K Juhlmann
                              Julia: Sam has terrible blood pressure problems. Mainly it is hypertension and he is maxed beyond adult doses on 4 different meds right now. We are adding a
                              Message 14 of 26 , Oct 2, 2002
                                Julia:

                                Sam has terrible blood pressure problems. Mainly it is hypertension and he
                                is maxed beyond adult doses on 4 different meds right now. We are adding a
                                5th tomorrow. The scary thing is that at times he drops quite low so the
                                meds have to be dosed and changed frequently. I'm just feeling quite scared
                                that his BP is getting worse by the month. Diastolics of 100-120 are the
                                norm these days and he has already had strokes when he was younger.

                                He is increasingly having a neurogenic bladder and needing more and more
                                cathing - this they attribute to dysautonomia.

                                His complete failure to tolerate feeds due to pseudo obstruction (GI
                                dysmotility) has made him IV nutrition dependent and this is attributed to
                                dysautonomia.

                                Increasing problems with temp regulation - so that the drops are lower and
                                the highs are higher.

                                heart rate is getting up to 180 while asleep and dropping as low as 40 -
                                thankfully the rhythm is sinus. this is supposedly due to dysautonomia.

                                he too can get the purple hands and feet, the sweating and flushing
                                episodes......he does feel pain though and I know other kids do not,
                                including his own brother.

                                We do treat the symptoms if we can - but there is not one specific treatment
                                for dysautonomia. (Kind of like Mito) In other words we manage the
                                dysmotility as you would any other kid . WE manage the BP with meds. Valium
                                has been especially helpful in combination with Zofran for vomiting/gagging
                                episodes.

                                I don't think dysautonomia necessarily is a progressive thing though. My
                                daughter Abby and son Zach were both dx at NYU Med Ctr when they were
                                toddlers. Abby's has improved and Zach's has only gotten mildly worse.

                                Anne
                                ----- Original Message -----
                                From: <Julia31528@...>
                                To: <Mito@yahoogroups.com>
                                Sent: Wednesday, October 02, 2002 5:49 AM
                                Subject: Re: Re: Re: Re: [Mito] Thyroid


                                > Anne,
                                >
                                > > Like Emilie they have dysautonomia - in Sam it is very
                                > >significant & getting very scary. I wish there were better ways to treat
                                it.
                                >
                                > What kinds of things does Sam have with his dysautonomia that are of
                                > concern? Emilie has tachycardia, but some of the other symptoms she has
                                > are more of a nuisance or even a curiosity--like her hands turning purple
                                > after she eats a meal. I've wondered for a while what serious
                                > implications there are with dysautonomia.
                                >
                                > Do they try to treat the dysautonomia at all in your boys?
                                >
                                > Thanks,
                                >
                                > Julia -- Mom to:
                                > Emilie (16), mito--complex IV, cp, ld
                                > Kaitlin (16), cp, asthma, a few autonomic symptoms
                                > Ian (20) migraines
                                > ...and wife to Tim, who has a heart of gold
                                >
                                >
                                >
                                >
                                > Please contact mito-owner@yahoogroups.com with any problems or questions.
                                >
                                > Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
                                >
                                >
                                >
                              • Mary R
                                Hi everyone, Cameron s surgery went well. The doctor did several biopsies of the Duodenum, stomach, and esophagus. She took pictures and gave them to me.
                                Message 15 of 26 , Oct 2, 2002

                                  Hi everyone,

                                  Cameron’s surgery went well.  The doctor did several biopsies of the Duodenum, stomach, and esophagus.  She took pictures and gave them to me.  There were some abnormalities.  I have a picture of the aberrant subclavin artery.  It is restricting the size of the esophagus, but the doctor said she could puff air into it and it would open, so she thought it might not be a problem.  Hello!  He has severe dismotility of the esophagus, so food travels slowly; it gets hung up in that narrow opening.  His primary care phys. is going to talk to a thoracic/cardiologist to see if there is anything we should be concerned about.  She also discovered nodules, they are white and soft.  She thinks they could be fat or calcium deposits.  Let’s hope she biopsied them.  We will get the pathology report back next Tues. or Wed.  I will keep you posted.  

                                  I am very tired and dealing with a lot of other issues besides Cam right now.  Those of you who will keep me in your thoughts and prayers it would be appreciated.

                                  Update you as results come in,

                                   Mary

                                  PS  Anyone who has had similar findings with the nodules please give me your feedback.  Thanks.

                                   

                                  -----Original Message-----
                                  From: Anne K Juhlmann [mailto:juhlmann@...]
                                  Sent:
                                  Wednesday, October 02, 2002 9:40 PM
                                  To: Mito@yahoogroups.com
                                  Subject: Re: Re: Re: Re: [
                                  Mito] Thyroid

                                   

                                  Julia:

                                  Sam has terrible blood pressure problems. Mainly it is hypertension and he
                                  is maxed beyond adult doses on 4 different meds right now. We are adding a
                                  5th tomorrow. The scary thing is that at times he drops quite low so the
                                  meds have to be dosed and changed frequently.  I'm just feeling quite scared
                                  that his BP is getting worse by the month. Diastolics of 100-120 are the
                                  norm these days and he has already had strokes when he was younger.

                                  He is increasingly having a neurogenic bladder and needing more and more
                                  cathing - this they attribute to dysautonomia.

                                  His complete failure to tolerate feeds due to pseudo obstruction (GI
                                  dysmotility) has made him IV nutrition dependent and this is attributed to
                                  dysautonomia.

                                  Increasing problems with temp regulation - so that the drops are lower and
                                  the highs are higher.

                                  heart rate is getting up to 180 while asleep and dropping as low as 40 -
                                  thankfully the rhythm is sinus.  this is supposedly due to dysautonomia.

                                  he too can get the purple hands and feet, the sweating and flushing
                                  episodes......he does feel pain though and I know other kids do not,
                                  including his own brother.

                                  We do treat the symptoms if we can - but there is not one specific treatment
                                  for dysautonomia. (Kind of like
                                  Mito) In other words we manage the
                                  dysmotility as you would any other kid . WE manage the BP with meds.  Valium
                                  has been especially helpful in combination with Zofran for vomiting/gagging
                                  episodes.

                                  I don't think dysautonomia necessarily is a progressive thing though. My
                                  daughter Abby and son Zach were both dx at NYU Med Ctr when they were
                                  toddlers. Abby's has improved and Zach's has only gotten mildly worse.

                                  Anne
                                  ----- Original Message -----
                                  From: <Julia31528@...>
                                  To: <Mito@yahoogroups.com>
                                  Sent:
                                  Wednesday, October 02, 2002 5:49 AM
                                  Subject: Re: Re: Re: Re: [
                                  Mito] Thyroid


                                  > Anne,
                                  >
                                  > > Like Emilie they have dysautonomia - in Sam it is very
                                  > >significant & getting very scary. I wish there were better ways to treat
                                  it.
                                  >
                                  > What kinds of things does Sam have with his dysautonomia that are of
                                  > concern?  Emilie has tachycardia, but some of the other symptoms she has
                                  > are more of a nuisance or even a curiosity--like her hands turning purple
                                  > after she eats a meal.  I've wondered for a while what serious
                                  > implications there are with dysautonomia.
                                  >
                                  > Do they try to treat the dysautonomia at all in your boys?
                                  >
                                  > Thanks,
                                  >
                                  > Julia -- Mom to:
                                  > Emilie (16),
                                  mito--complex IV, cp, ld
                                  > Kaitlin (16), cp, asthma, a few autonomic symptoms
                                  > Ian (20) migraines
                                  > ...and wife to Tim, who has a heart of gold
                                  >
                                  >
                                  >
                                  >
                                  > Please contact mito-owner@yahoogroups.com with any problems or questions.
                                  >
                                  > Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
                                  >
                                  >
                                  >



                                  Please contact mito-owner@yahoogroups.com with any problems or questions.

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

                                • Hollyorn@aol.com
                                  Mary, Maya has the soft, white nodules too. They never did tell me what they were so if you find out I would be interested too. I can t remember if they did
                                  Message 16 of 26 , Oct 3, 2002
                                    Mary,
                                    Maya has the soft, white nodules too. They never did tell me what they were
                                    so if you find out I would be interested too. I can't remember if they did a
                                    biopsy of them or not, but I have pictures and she noted them in the report
                                    and also commented on them. I was there when Maya had her scope so I
                                    remember her saying that they could have been a fat or cholesterol deposit.
                                    Holly
                                  • Cindy
                                    Mary... glad to hear it went well. I know it s hard to wait for the biopsy results and frustrating. Hang in there. I don t have experience with the nodules
                                    Message 17 of 26 , Oct 3, 2002
                                      Mary... glad to hear it went well.  I know it's hard to wait for the biopsy results and frustrating.  Hang in there.  I don't have experience with the nodules really...  Take care...  Cindy (mom to Seth and Ben)
                                      Mary wrote:

                                      Hi everyone,

                                      Cameron’s surgery went well    PS  Anyone who has had similar findings with the nodules please give me your feedback.  Thanks.

                                       

                                    • VisibleWorship@aol.com
                                      Mary Will be praying for you...waiting for results it he worst. I don t know anything about the nodules (altho I have heard of lipid being there I think) and
                                      Message 18 of 26 , Oct 3, 2002
                                        Mary

                                        Will be praying for you...waiting for results it he worst.  I don't know anything about the nodules (altho I have heard of lipid being there I think) and the abberant subclavian is not in the same place as Andrew's was but I think you should push to have it removed...it is fairly simples surgery...they wanted us to go home th enext day but Andrew' had had a lost of respiratory issues in the night and I wanted to a have a good night before we went home, so we stayed two nights.  I think I would push to get it removed...

                                        deb
                                      • Julia31528@aol.com
                                        Anne, Thanks for sharing about your kids dysautonomia syptoms. Boy, the stuff Sam is dealing with is really scary. Emilie has several of the things Sam has,
                                        Message 19 of 26 , Oct 3, 2002
                                          Anne,

                                          Thanks for sharing about your kids' dysautonomia syptoms. Boy, the stuff
                                          Sam is dealing with is really scary. Emilie has several of the things
                                          Sam has, but not as intense.

                                          BTW, one of her doctors mentioned he sometimes uses Gabitril for
                                          autonomic symptoms. Has Sam ever been on this? I have no idea how
                                          effective it is.



                                          Julia -- Mom to:
                                          Emilie (16), mito--complex IV, cp, ld
                                          Kaitlin (16), cp, asthma, a few autonomic symptoms
                                          Ian (20) migraines
                                          ...and wife to Tim, who has a heart of gold
                                        • Anne K Juhlmann
                                          ... From: ... Julia, do you remember way back wne on the Our Kids List we would sometimes coorespond about the similariries between Zach
                                          Message 20 of 26 , Oct 4, 2002
                                            ----- Original Message -----
                                            From: <Julia31528@...>
                                            > Thanks for sharing about your kids' dysautonomia syptoms. Boy, the stuff
                                            > Sam is dealing with is really scary. Emilie has several of the things
                                            > Sam has, but not as intense.

                                            Julia, do you remember way back wne on the Our Kids List we would sometimes
                                            coorespond about the similariries between Zach and Em? i think that was 5
                                            years ago or so before Zach had a diagnosis though he did have the
                                            dysautonomia part. I always though Emilie seemed so much like my kids.

                                            > BTW, one of her doctors mentioned he sometimes uses Gabitril for
                                            > autonomic symptoms. Has Sam ever been on this? I have no idea how
                                            > effective it is.
                                            >
                                            he is not on that and no one has ever recommended it. Hmm, something to
                                            look into. he takes elavil (amytriptilline), neurontin (gabapentin) and
                                            periactin (cyproheptadine) for the "autonomic" symptoms. they have seemed to
                                            all 3 work together to decrease the frequency of his abdominal migraines
                                            that lead to typical migraines but have not completely eliminated them.

                                            Thanks for the suggestion. Any more news on the thyroid issues?

                                            Anne
                                          • Julia31528@aol.com
                                            Anne, ... Yes!--though I didn t make the connection until you reminded me. In fact, I archived some of your messages because I was so struck by the
                                            Message 21 of 26 , Oct 4, 2002
                                              Anne,

                                              >Julia, do you remember way back wne on the Our Kids List we would sometimes
                                              >coorespond about the similariries between Zach and Em? i think that was 5
                                              >years ago or so before Zach had a diagnosis though he did have the
                                              >dysautonomia part. I always though Emilie seemed so much like my kids.
                                              >
                                              Yes!--though I didn't make the connection until you reminded me. In
                                              fact, I archived some of your messages because I was so struck by the
                                              similarities between Zach and Emilie. Guess we were right about how much
                                              alike they were, weren't we?

                                              >Thanks for the suggestion. Any more news on the thyroid issues?
                                              >
                                              No. The girls' endo is on vacation for a couple of weeks, so we'll just
                                              have to wait for now.

                                              Take care,

                                              Julia -- Mom to:
                                              Emilie (16), mito--complex IV, cp, ld
                                              Kaitlin (16), cp, asthma, a few autonomic symptoms
                                              Ian (20) migraines
                                              ...and wife to Tim, who has a heart of gold
                                            • Mary R
                                              Holly, They do not know what the nodules are. The biopsy shows extreme amounts of cells that indicate allergy, so I wonder if they are an allergic reaction
                                              Message 22 of 26 , Oct 9, 2002

                                                Holly,

                                                They do not know what the nodules are.  The  biopsy shows extreme amounts of cells that indicate allergy, so I wonder if they are an allergic reaction of some kind?  I will post a group email about the biopsy results, after I hear about a course of action.

                                                Mary

                                                 

                                                -----Original Message-----
                                                From: Hollyorn@... [mailto:Hollyorn@...]
                                                Sent: Thursday, October 03, 2002 10:24 AM
                                                To: Mito@yahoogroups.com
                                                Subject: Re: [Mito] Cameron's biopsy/endoscopy

                                                 

                                                Mary,
                                                Maya has the soft, white nodules too.  They never did tell me what they were
                                                so if you find out I would be interested too.  I can't remember if they did a
                                                biopsy of them or not, but I have pictures and she noted them in the report
                                                and also commented on them.  I was there when Maya had her scope so I
                                                remember her saying that they could have been a fat or cholesterol deposit.
                                                Holly



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                                              • Mary R
                                                Deb, I really need to know more about the subclavin artery. I know it is obstructing the esophagus, but I was told by his doctor that it is major surgery and
                                                Message 23 of 26 , Oct 9, 2002

                                                  Deb,

                                                  I really need to know more about the subclavin artery.  I know it is obstructing the esophagus, but I was told by his doctor that it is major surgery and we do not know what course of action to take.  When you have the chance let’s talk.

                                                  Mary

                                                   

                                                  -----Original Message-----
                                                  From: VisibleWorship@... [mailto:VisibleWorship@...]
                                                  Sent: Thursday, October 03, 2002 12:03 PM
                                                  To: Mito@yahoogroups.com
                                                  Subject: Re: [Mito] Cameron's biopsy/endoscopy

                                                   

                                                  Mary

                                                  Will be praying for you...waiting for results it he worst.  I don't know anything about the nodules (altho I have heard of lipid being there I think) and the abberant subclavian is not in the same place as Andrew's was but I think you should push to have it removed...it is fairly simples surgery...they wanted us to go home th enext day but Andrew' had had a lost of respiratory issues in the night and I wanted to a have a good night before we went home, so we stayed two nights.  I think I would push to get it removed...

                                                  deb



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                                                • Mary R
                                                  Thanks Cindy, Murray did the biopsy and it came back abnormal. I will post to everyone when I know more. Mary ... From: Cindy [mailto:rella19@earthlink.net]
                                                  Message 24 of 26 , Oct 9, 2002

                                                    Thanks Cindy,

                                                    Murray did the biopsy and it came back abnormal.  I will post to everyone when I know more.

                                                    Mary

                                                     

                                                    -----Original Message-----
                                                    From: Cindy [mailto:rella19@...]
                                                    Sent:
                                                    Thursday, October 03, 2002 11:04 AM
                                                    To: Mito@yahoogroups.com
                                                    Subject: RE: [
                                                    Mito] Cameron's biopsy/endoscopy

                                                     

                                                    Mary... glad to hear it went well.  I know it's hard to wait for the biopsy results and frustrating.  Hang in there.  I don't have experience with the nodules really...  Take care...  Cindy (mom to Seth and Ben)

                                                    Mary wrote:

                                                    Hi everyone,

                                                    Cameron’s surgery went well    PS  Anyone who has had similar findings with the nodules please give me your feedback.  Thanks.

                                                     



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                                                  • VisibleWorship@aol.com
                                                    Mary I am happy to talk to you anytime...it is major surgery...this was our first experience with a serious medical condition and they took me on a tour of the
                                                    Message 25 of 26 , Oct 9, 2002
                                                      Mary

                                                      I am happy to talk to you anytime...it is major surgery...this was our first experience with a serious medical condition and they took me on a tour of the ICU and said he MIGHT go there...it was a cardio-vascular surgeon who did it and it was considered heart surgery...

                                                      he did much better than we did seeing out little 11month old with all those tubes and such...they tol dus to plan to stay a week...the first night he had some respiratory issues and they resp therapist spent the evening in our room, but he was basically fine.  The next morning the surgeon came in and was ready to discharge us...I asked him what would I do if he had the problems that night he had the night before and he wasn't that concerned but I was nervous I would miss something...so he kept us there b/c he felt I was too emotionally incompetent to take care of him (that's what he said)...which was fine with me so we went home the next day...he recovered great...of course, he didn't have  mito then...

                                                      if you wanna call me, you have my number right?  I am up from 6.30a to 12.30p every night...Central time...I'd be happy to chat with you...
                                                      deb
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