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Regan's story

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  • rachel_wrigley
    Regan s story Hi I m Rachel, Regan & Marconi s mum and this is the story of Regan My second son, I have 3 boys Jordan aged 7, Regan aged 2 years and 8 months,
    Message 1 of 4 , May 6 2:48 PM
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      Regan's story

      Hi I'm Rachel, Regan & Marconi's mum and this is the story of Regan
      My second son, I have 3 boys Jordan aged 7, Regan aged 2 years and 8
      months, and Marconi aged 4 months, both Regan & Marconi were born
      with problems, we still don't know what it is, but we and the
      doctors suspect it's XLMTM, you may have already read Marconi's
      story, this is Regan's story.

      My son Regan was born on the 01/10/2002 he was so beautiful, I was
      only in labour a short time and one push he was out, my mother then
      noticed his colour and alerted the midwife, she then gave him some
      oxygen and handed him back to me, we laid there together just
      looking at each other then my mum and I cried, she held him I
      noticed she kept pulling back his blanket, she then told me that he
      wasn't a well baby but not to worry (she had noticed he was loosing
      his colour), she then went to get help, there where about 4 doctors
      around his bed all I could do was cry and ask is he going to be ok.

      He was then taken to I.C.U
      I went to see him, when I got there he was laid on his tummy with a
      tube in his nose (NG tube) they told me he was floppy which was
      because he was born quickly, they also said he should be ok in 24
      hours at 1 day old Regan went into special care (SCBU) where he
      stayed until day 3, he was then taken back to I.C.U, I was also told
      at this point that he had been but on a ventilator, when I got there
      he was on CPAP he was on that for another day, they took him off
      when he went for his MIR scan, when he came back to my surprise he
      was taken to special care again where all the nurses and I could do
      was care for him, I tried to breast feed him but due to him not
      being able to suck he couldn't latch on, we tried the bottle every
      time he drank from the bottle his sats would drop and he would need
      oxygen, then they had to give him the rest of the feed through the
      NG tube,
      I thought he would never drink from a bottle but he did within a
      week and half he was away drinking slowly but he managed it, I went
      to see him one day and nurse showed me a first aid video, I then
      knew he was due to come home, I was so pleased when he came home
      aged 18 days.

      He was doing fine at home up until the age of 8 weeks when he had an
      attack of bronchiolitis, I took him to the doctors, all they gave
      him was nose drops, 4 hours later he ended up in hospital his skin
      was nearly grey, his nostrils were flaring, he was very ill, he
      ended up on a vent, NG tube and drip as he was so dehydrated, all I
      could do was ask the doctors about his chances, all they said its
      too early to tell it depends how he reacts to the antibiotics.

      He was put on children's I.C.U it was a very scary time for me as I
      had never seen him like that before, the vent was doing most of the
      work for him, as the days passed I noticed he was awake more and
      breathing a lot better, he was on the vent for 4 days then he was
      put on a ward where again he was struggling with his bottle, he had
      thickener in his feeds so he could keep them down, on day 8 I took
      him home again only to be faced with the illness again a week later
      (Christmas eve)he was taken to casualty again, there they checked
      him over and said I could care for him at home, I was pleased but
      scared at the same time, I was glad to have him home for xmas, I had
      to feed him 1oz every hour which was very tiring but it helped him
      he soon got back to his normally jolly self.

      As the months passed I was so frustrated as he was ill every month
      with one thing or another mainly chest infections, but still no
      answers as to why this was.

      As he hit 1 year old the illnesses seemed to lessen, Regan has had
      physiotherapy, occupational therapy and speech therapy, he seemed to
      come on well after the age of one as before with his illnesses he
      was right back to square one again and had to reduce all the things
      we did with him.

      He crawled at the 13 months, it was commando style for a while I was
      shocked as I got told he'd never do all the things he was doing, he
      took his first steps at 18 months.

      He's 2 years and 8 months old now, he cannot talk he tries to
      communicate with me by pointing at the things he wants.

      He is a little unsteady on his feet, he keeps falling over and
      hasn't got the reflexes to catch him self when he falls he falls
      flat on his face and knees ouch!!!

      He's such a happy little boy always smiling he's the light of my
      life, it makes my day just to see him smile.

      I have uploaded some photos of Regan and Marconi for you to have a
      look at.

      Thank you for reading our story Rachel & Moz
    • badboymoz2004
      Regan s story Hi I m Rachel, Regan & Marconi s mum and this is the story of Regan My second son, I have 3 boys Jordan aged 7, Regan aged 2 years and 8 months,
      Message 2 of 4 , May 7 5:09 AM
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        Regan's story

        Hi I'm Rachel, Regan & Marconi's mum and this is the story of Regan
        My second son, I have 3 boys Jordan aged 7, Regan aged 2 years and 8
        months, and Marconi aged 4 months, both Regan & Marconi were born
        with problems, we still don't know what it is, but we and the
        doctors suspect it's XLMTM, you may have already read Marconi's
        story, this is Regan's story.

        My son Regan was born on the 01/10/2002 he was so beautiful, I was
        only in labour a short time and one push he was out, my mother then
        noticed his colour and alerted the midwife, she then gave him some
        oxygen and handed him back to me, we laid there together just
        looking at each other then my mum and I cried, she held him I
        noticed she kept pulling back his blanket, she then told me that he
        wasn't a well baby but not to worry (she had noticed he was loosing
        his colour), she then went to get help, there where about 4 doctors
        around his bed all I could do was cry and ask is he going to be ok.

        He was then taken to I.C.U
        I went to see him, when I got there he was laid on his tummy with a
        tube in his nose (NG tube) they told me he was floppy which was
        because he was born quickly, they also said he should be ok in 24
        hours at 1 day old Regan went into special care (SCBU) where he
        stayed until day 3, he was then taken back to I.C.U, I was also told
        at this point that he had been but on a ventilator, when I got there
        he was on CPAP he was on that for another day, they took him off
        when he went for his MIR scan, when he came back to my surprise he
        was taken to special care again where all the nurses and I could do
        was care for him, I tried to breast feed him but due to him not
        being able to suck he couldn't latch on, we tried the bottle every
        time he drank from the bottle his sats would drop and he would need
        oxygen, then they had to give him the rest of the feed through the
        NG tube,
        I thought he would never drink from a bottle but he did within a
        week and half he was away drinking slowly but he managed it, I went
        to see him one day and nurse showed me a first aid video, I then
        knew he was due to come home, I was so pleased when he came home
        aged 18 days.

        He was doing fine at home up until the age of 8 weeks when he had an
        attack of bronchiolitis, I took him to the doctors, all they gave
        him was nose drops, 4 hours later he ended up in hospital his skin
        was nearly grey, his nostrils were flaring, he was very ill, he
        ended up on a vent, NG tube and drip as he was so dehydrated, all I
        could do was ask the doctors about his chances, all they said its
        too early to tell it depends how he reacts to the antibiotics.

        He was put on children's I.C.U it was a very scary time for me as I
        had never seen him like that before, the vent was doing most of the
        work for him, as the days passed I noticed he was awake more and
        breathing a lot better, he was on the vent for 4 days then he was
        put on a ward where again he was struggling with his bottle, he had
        thickener in his feeds so he could keep them down, on day 8 I took
        him home again only to be faced with the illness again a week later
        (Christmas eve)he was taken to casualty again, there they checked
        him over and said I could care for him at home, I was pleased but
        scared at the same time, I was glad to have him home for xmas, I had
        to feed him 1oz every hour which was very tiring but it helped him
        he soon got back to his normally jolly self.

        As the months passed I was so frustrated as he was ill every month
        with one thing or another mainly chest infections, but still no
        answers as to why this was.

        As he hit 1 year old the illnesses seemed to lessen, Regan has had
        physiotherapy, occupational therapy and speech therapy, he seemed to
        come on well after the age of one as before with his illnesses he
        was right back to square one again and had to reduce all the things
        we did with him.

        He crawled at the 13 months, it was commando style for a while I was
        shocked as I got told he'd never do all the things he was doing, he
        took his first steps at 18 months.

        He's 2 years and 8 months old now, he cannot talk he tries to
        communicate with me by pointing at the things he wants.

        He is a little unsteady on his feet, he keeps falling over and
        hasn't got the reflexes to catch him self when he falls he falls
        flat on his face and knees ouch!!!

        He's such a happy little boy always smiling he's the light of my
        life, it makes my day just to see him smile.

        I have uploaded some photos of Regan and Marconi for you to have a
        look at.

        Thank you for reading our story Rachel & Moz
      • kristin cypher
        Hi Rachel! I only have a minute, but I wanted to reply to your email. My son, Sebastian is currently 25 months old, and he and Regan sound SO much alike!
        Message 3 of 4 , May 7 10:40 AM
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          Hi Rachel!
           
          I only have a minute, but I wanted to reply to your email.  My son, Sebastian is currently 25 months old, and he and Regan sound SO much alike!  Their developmental milestones are almost exact, and Sebi has the same problems with being a little unsteady on his feet and falling 'badly'.
           
          I would love to talk to you more - it feels unsatisfying to write so little.  Please take a look at Sebastian's photos on the message board, and I will write more later today.
           
          Regan sounds so sweet!!
          Kristin

          badboymoz2004 <badboymoz2004@...> wrote:
          Regan's story

          Hi I'm Rachel, Regan & Marconi's mum and this is the story of Regan
          My second son, I have 3 boys Jordan aged 7, Regan aged 2 years and 8
          months, and Marconi aged 4 months, both Regan & Marconi were born
          with problems, we still don't know what it is, but we and the
          doctors suspect it's XLMTM, you may have already read Marconi's
          story, this is Regan's story.

          My son Regan was born on the 01/10/2002 he was so beautiful, I was
          only in labour a short time and one push he was out, my mother then
          noticed his colour and alerted the midwife, she then gave him some
          oxygen and handed him back to me, we laid there together just
          looking at each other then my mum and I cried, she held him I
          noticed she kept pulling back his blanket, she then told me that he
          wasn't a well baby but not to worry (she had noticed he was loosing
          his colour), she then went to get help, there where about 4 doctors
          around his bed all I could do was cry and ask is he going to be ok.

          He was then taken to I.C.U
          I went to see him, when I got there he was laid on his tummy with a
          tube in his nose (NG tube) they told me he was floppy which was
          because he was born quickly, they also said he should be ok in 24
          hours at 1 day old Regan went into special care (SCBU) where he
          stayed until day 3, he was then taken back to I.C.U, I was also told
          at this point that he had been but on a ventilator, when I got there
          he was on CPAP he was on that for another day, they took him off
          when he went for his MIR scan, when he came back to my surprise he
          was taken to special care again where all the nurses and I could do
          was care for him, I tried to breast feed him but due to him not
          being able to suck he couldn't latch on, we tried the bottle every
          time he drank from the bottle his sats would drop and he would need
          oxygen, then they had to give him the rest of the feed through the
          NG tube,
          I thought he would never drink from a bottle but he did within a
          week and half he was away drinking slowly but he managed it, I went
          to see him one day and nurse showed me a first aid video, I then
          knew he was due to come home, I was so pleased when he came home
          aged 18 days.

          He was doing fine at home up until the age of 8 weeks when he had an
          attack of bronchiolitis, I took him to the doctors, all they gave
          him was nose drops, 4 hours later he ended up in hospital his skin
          was nearly grey, his nostrils were flaring, he was very ill, he
          ended up on a vent, NG tube and drip as he was so dehydrated, all I
          could do was ask the doctors about his chances, all they said its
          too early to tell it depends how he reacts to the antibiotics.

          He was put on children's I.C.U it was a very scary time for me as I
          had never seen him like that before, the vent was doing most of the
          work for him, as the days passed I noticed he was awake more and
          breathing a lot better, he was on the vent for 4 days then he was
          put on a ward where again he was struggling with his bottle, he had
          thickener in his feeds so he could keep them down, on day 8 I took
          him home again only to be faced with the illness again a week later
          (Christmas eve)he was taken to casualty again, there they checked
          him over and said I could care for him at home, I was pleased but
          scared at the same time, I was glad to have him home for xmas, I had
          to feed him 1oz every hour which was very tiring but it helped him
          he soon got back to his normally jolly self.

          As the months passed I was so frustrated as he was ill every month
          with one thing or another mainly chest infections, but still no
          answers as to why this was.

          As he hit 1 year old the illnesses seemed to lessen, Regan has had
          physiotherapy, occupational therapy and speech therapy, he seemed to
          come on well after the age of one as before with his illnesses he
          was right back to square one again and had to reduce all the things
          we did with him.

          He crawled at the 13 months, it was commando style for a while I was
          shocked as I got told he'd never do all the things he was doing, he
          took his first steps at 18 months.

          He's 2 years and 8 months old now, he cannot talk he tries to
          communicate with me by pointing at the things he wants.

          He is a little unsteady on his feet, he keeps falling over and
          hasn't got the reflexes to catch him self when he falls he falls
          flat on his face and knees ouch!!!

          He's such a happy little boy always smiling he's the light of my
          life, it makes my day just to see him smile.

          I have uploaded some photos of Regan and Marconi for you to have a
          look at.

          Thank you for reading our story Rachel & Moz




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        • hughesdewy
          Hello Rachel, I m Wendy and have a son (age 9) with XLMTM. We are a UK based family and while Zak met all of his milestones at the late end of normal, he
          Message 4 of 4 , May 9 3:25 AM
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            Hello Rachel, I'm Wendy and have a son (age 9) with XLMTM.

            We are a UK based family and while Zak met all of his milestones at
            the late end of normal, he suffered lots of respiratory problems as
            a baby but fortunately never required trach. I am very happy to
            communicate with you and support you if you would like, as obviously
            we have a lot of experiences with Zak and sometimes things are
            different in the UK to USA in terms of medical treatment, schooling,
            etc. There are some very good UK based MTM specialist doctors, both
            in the north and south of England and Zak has been involved in
            research projects in the UK.

            Zak didn't have a diagnosis until he was 18 months old and we were
            told that it was a "benign hypotonia" as well as all sorts of other
            conditions. Although Zak was 6 months when he has is biopsy, back
            then they had only just found the faulty gene so it took ages to get
            the results - it's a lot quicker today I think. Reading the
            characteristics of MTM it was so obvious that he had this condition
            and not something else! Another thing to look for is a large
            armspan as children with MTM tend to have unusually longer arms than
            other children!. Zak had his muscle biopsy at 6 months, and was
            only under anasthetic for 20 minutes which he tolerated very well.
            He's had another short operation too since (for one undecended
            testes) which he tolerated well and so long as the anaesthetist is
            aware that they have MTM and they are a specialist hospital and have
            PICU unit, your sons should be fine. Zak didn't need anything
            special after his surgeries. If your sons have undecended testes, I
            strongly suggest that if your sons are going to have a muscle biopsy
            then they do this at the same time to save them having another op at
            a later date!

            I'm sorry to hear that Regan is falling all the time - Zak did this
            too when he was 2-3 years and we had a leather helmet made for him
            (by NHS) which protected his head. He quickly learnt to save
            himself with his hands and falls maybe only occasionally when he's
            tired these days. Also, we make sure that Zak has shoes with very
            soft soles. We were given NHS ones to begin with (a bit like Dr
            Martins) and they were so rigid he tripped over them all the time!!

            Zak is very happy and strong these days - and nowadays our life is
            stress-free and normal. He is a different child today than the weak
            baby that he once was and is fully integrated in mainstream school
            with full-time helper. This is something I can help you with too -
            as Zak had full-time help from nursery age and it's important that
            you accept nothing less than this from an early age!! (Another
            story!)

            Take care and hope you get a diagnosis soon. If you wish to contact
            me, email and I will give you my phone number if you like.

            Best wishes, Wendy


            --- In Myotubular_Myopathy@yahoogroups.com, "badboymoz2004"
            <badboymoz2004@y...> wrote:
            > Regan's story
            >
            > Hi I'm Rachel, Regan & Marconi's mum and this is the story of
            Regan
            > My second son, I have 3 boys Jordan aged 7, Regan aged 2 years and
            8
            > months, and Marconi aged 4 months, both Regan & Marconi were born
            > with problems, we still don't know what it is, but we and the
            > doctors suspect it's XLMTM, you may have already read Marconi's
            > story, this is Regan's story.
            >
            > My son Regan was born on the 01/10/2002 he was so beautiful, I was
            > only in labour a short time and one push he was out, my mother
            then
            > noticed his colour and alerted the midwife, she then gave him some
            > oxygen and handed him back to me, we laid there together just
            > looking at each other then my mum and I cried, she held him I
            > noticed she kept pulling back his blanket, she then told me that
            he
            > wasn't a well baby but not to worry (she had noticed he was
            loosing
            > his colour), she then went to get help, there where about 4
            doctors
            > around his bed all I could do was cry and ask is he going to be ok.
            >
            > He was then taken to I.C.U
            > I went to see him, when I got there he was laid on his tummy with
            a
            > tube in his nose (NG tube) they told me he was floppy which was
            > because he was born quickly, they also said he should be ok in 24
            > hours at 1 day old Regan went into special care (SCBU) where he
            > stayed until day 3, he was then taken back to I.C.U, I was also
            told
            > at this point that he had been but on a ventilator, when I got
            there
            > he was on CPAP he was on that for another day, they took him off
            > when he went for his MIR scan, when he came back to my surprise he
            > was taken to special care again where all the nurses and I could
            do
            > was care for him, I tried to breast feed him but due to him not
            > being able to suck he couldn't latch on, we tried the bottle every
            > time he drank from the bottle his sats would drop and he would
            need
            > oxygen, then they had to give him the rest of the feed through the
            > NG tube,
            > I thought he would never drink from a bottle but he did within a
            > week and half he was away drinking slowly but he managed it, I
            went
            > to see him one day and nurse showed me a first aid video, I then
            > knew he was due to come home, I was so pleased when he came home
            > aged 18 days.
            >
            > He was doing fine at home up until the age of 8 weeks when he had
            an
            > attack of bronchiolitis, I took him to the doctors, all they gave
            > him was nose drops, 4 hours later he ended up in hospital his skin
            > was nearly grey, his nostrils were flaring, he was very ill, he
            > ended up on a vent, NG tube and drip as he was so dehydrated, all
            I
            > could do was ask the doctors about his chances, all they said its
            > too early to tell it depends how he reacts to the antibiotics.
            >
            > He was put on children's I.C.U it was a very scary time for me as
            I
            > had never seen him like that before, the vent was doing most of
            the
            > work for him, as the days passed I noticed he was awake more and
            > breathing a lot better, he was on the vent for 4 days then he was
            > put on a ward where again he was struggling with his bottle, he
            had
            > thickener in his feeds so he could keep them down, on day 8 I took
            > him home again only to be faced with the illness again a week
            later
            > (Christmas eve)he was taken to casualty again, there they checked
            > him over and said I could care for him at home, I was pleased but
            > scared at the same time, I was glad to have him home for xmas, I
            had
            > to feed him 1oz every hour which was very tiring but it helped him
            > he soon got back to his normally jolly self.
            >
            > As the months passed I was so frustrated as he was ill every month
            > with one thing or another mainly chest infections, but still no
            > answers as to why this was.
            >
            > As he hit 1 year old the illnesses seemed to lessen, Regan has had
            > physiotherapy, occupational therapy and speech therapy, he seemed
            to
            > come on well after the age of one as before with his illnesses he
            > was right back to square one again and had to reduce all the
            things
            > we did with him.
            >
            > He crawled at the 13 months, it was commando style for a while I
            was
            > shocked as I got told he'd never do all the things he was doing,
            he
            > took his first steps at 18 months.
            >
            > He's 2 years and 8 months old now, he cannot talk he tries to
            > communicate with me by pointing at the things he wants.
            >
            > He is a little unsteady on his feet, he keeps falling over and
            > hasn't got the reflexes to catch him self when he falls he falls
            > flat on his face and knees ouch!!!
            >
            > He's such a happy little boy always smiling he's the light of my
            > life, it makes my day just to see him smile.
            >
            > I have uploaded some photos of Regan and Marconi for you to have a
            > look at.
            >
            > Thank you for reading our story Rachel & Moz
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