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headaches/eating problems

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  • serenabirtwistle
    Hi our son Adam is now 13 years old and has the x-linked form of MTM, he is doing great physically but we are having problems with headaches especially in the
    Message 1 of 3 , Feb 5, 2006
      Hi our son Adam is now 13 years old and has the x-linked form of MTM,
      he is doing great physically but we are having problems with headaches
      especially in the mornings, I have a feeling that this could be his
      oxygen levels at night does anybody have any others ideas? I know
      that it is not his eyes! Next problem is that adam is leaving all of
      his food and I dont know if I should have his swallowing assessed
      again? I am a bit confused about this because he seems to be able to
      eat sweets and crisps ok although he takes ages. We have had to put a
      lock on the door where all the choc bars and crisps are kept because
      he was leaving all of his food and then we found a stash of wrappers
      under his bed. Even though we have done this he is still leaving his
      food - if I give him a dish of spaghetti he is happy and he will eat
      it but that is not a very good diet when he needs to gain weight. Is
      anybody else having this problem? Any advice would be appreciated.
      Thanks
    • Maurizio
      Hi Serena Adam is now 13 and that is an awkward age for any young man, I remember I was the same with eating at his age, is he loosing a lot of weight? It is a
      Message 2 of 3 , Feb 5, 2006
        Hi Serena

        Adam is now 13 and that is an awkward age for any young man, I
        remember I was the same with eating at his age, is he loosing a lot
        of weight? It is a good idea to try and keep his weight up as much
        as possible at this time as sudden growth spurts around the age of
        puberty can cause other problems such as scoliosis of the spine
        which can lead to breathing difficulties, it is well worth having an
        over night oximetry done, is he drowsy in the day time? His head
        aches could be caused by his oxygen levels falling in the night, or
        it could just be all the chocolate and junk food he's been eating
        lately.

        I cant really give any advise from first hand experience as my boys
        are only 1 year and 3 years old, there are some other parents on
        this site with boys around the same age, hopefully they will have
        some ideas.

        Hope you and Adam are well

        Moz, Rachel & Boys

        --- In Myotubular_Myopathy@yahoogroups.com, "serenabirtwistle"
        <serena.birtwistle@...> wrote:
        >
        > Hi our son Adam is now 13 years old and has the x-linked form of
        MTM,
        > he is doing great physically but we are having problems with
        headaches
        > especially in the mornings, I have a feeling that this could be
        his
        > oxygen levels at night does anybody have any others ideas? I know
        > that it is not his eyes! Next problem is that adam is leaving all
        of
        > his food and I dont know if I should have his swallowing assessed
        > again? I am a bit confused about this because he seems to be able
        to
        > eat sweets and crisps ok although he takes ages. We have had to
        put a
        > lock on the door where all the choc bars and crisps are kept
        because
        > he was leaving all of his food and then we found a stash of
        wrappers
        > under his bed. Even though we have done this he is still leaving
        his
        > food - if I give him a dish of spaghetti he is happy and he will
        eat
        > it but that is not a very good diet when he needs to gain weight.
        Is
        > anybody else having this problem? Any advice would be
        appreciated.
        > Thanks
        >
      • Wendy
        Hi Serena Sorry to hear about Adam. I would almost certainly say that his morning headaches are due to nighttime hypoventilation and I don t know if he s
        Message 3 of 3 , Feb 5, 2006

          Hi Serena

          Sorry to hear about Adam.  I would almost certainly say that his morning headaches are due to nighttime hypoventilation and I don’t know if he’s having regular checks for his breathing.  It might just be that he is “borderline” because Zak too had headaches for a while (but “grew” out of them) and was at the normal end of “abnormal” – so they decided to wait and see before giving any oxygen overnight.  Fortunately it improved.  However, the other thing is that Zak has a BREAS machine which he uses for 20 mins every day to exercise his lungs and increase his lung capacity, he just has a mask on and reads or plays PS2 – even since the summer this has improved his lung capacity by 13%!  Also because his lung function is so good they have decided not to give him sleep studies, as he is clearly doing okay.  It could be that because Adam is growing so rapidly (puberty) – his muscles are taking a while to catch up in growth and tone – you are wise to think about getting him checked out.  Other signs of hypoventilation are poor circulation, snoring, extreme tiredness during the day.  Also if he’s been suffering lots of colds over the winter, this could be a contributory factor.

          The other thing it could be is dehydration.  Our boys need excessive amounts to keep healthy lung-function, and as they sweat a lot more than “normal” kids, need to top up their hydration levels.  Teenage boys are notorious for not bothering about having a drink. You could try getting him to increase his water/liquid intake.  Zak has a coupleof bottles of diluted squash at his desk all day.

          With regard to the eating, as you know, Zak has gone through loads of stages in his life when he’s used food as a “manipulative tool” to get our attention, for whatever reason.  These are the tips we were given when Zak was age 5 and refused to eat (more through fear of choking I think initially, but it became a habit and a way to get attention in the end.  It could also be that Adam has felt himself “choking” especially if he has grown and is feeling generally “weaker” at the moment.  This worked so well, and we’ve still have to revert back to them from time to time.  Obviously you will have to readjust for a teenager, but the principal is the same:

          -       Offer 6 opportunities to eat during the day.  Breakfast, mid morning snack, lunch, mid-afternoon snack, tea, bedtime snack.

          -       Try to incorporate fruit or protein (cheese/meat) into the snack, so that if he’s just eating a plate of spaghetti for tea at least he’s had some fruit/protein too.

          -       Offer smaller portions of food, so that he finishes them and give masses of praise

          -       Give extra vitamins (sometimes vitamin deficiency = decrease in appetite)

          -       “Hide” high calorie foods, ie add butter to potatoes, double cream, etc.

          -       Limit eating times to 20-30 minutes and no matter how much he’s eaten, take the food away without comment.

          -       Make eating times pleasurable – with the whole family if possible at the table.

          -       Try to stick to rigorous eating times.

          -       Never, ever mention that he hasn’t eaten any food.  Never argue about food.

          -       ALWAYS talk positively about food and comment on what he’s done well, ie “you’ve eaten your spaghetti quickly”!

          -       Get him involved in preparing the food (this has really helped Zak recently – he’s a master a pancakes and always wants to eat every morsel of food he’s prepared!  We have a kid’s cook night on Friday nights (when I’m organized!).

          -       Get him to choose his weekly “menu” of food, perhaps with Rebecca.

          Serena, eating is always going to be an issue with our kids who didn’t have a gastrostomy and like I said, perhaps because he’s 13 and he’s grown recently he may be feeling more tired, weaker and could be even having some swallowing issues.  If he feels like he’s choking then the advice I was given was to get Zak to put his chin on his chest (which blocks off the airway) and swallow.  Never give different textures of foods too (like cornflakes and milk (crisp and liquid) – sure to make them choke).  Try to use “softer” foods in sauces: bolognaise, pasta, ravioli, chilli and rice, etc. which are much easier to swallow than say, dry roasted meats and potatoes.

          Good luck and please phone or email if you want to chat or need more information on the above.

          Love to you all,

          Wendy xx

           

           

          -----Original Message-----
          From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of serenabirtwistle
          Sent:
          05 February 2006 12:07
          To: Myotubular_Myopathy@yahoogroups.com
          Subject: [Myotubular_Myopathy] headaches/eating problems

           

          Hi our son Adam is now 13 years old and has the x-linked form of MTM,
          he is doing great physically but we are having problems with headaches
          especially in the mornings, I have a feeling that this could be his
          oxygen levels at night does anybody have any others ideas?  I know
          that it is not his eyes! Next problem is that adam is leaving all of
          his food and I dont know if I should have his swallowing assessed
          again?  I am a bit confused about this because he seems to be able to
          eat sweets and crisps ok although he takes ages.  We have had to put a
          lock on the door where all the choc bars and crisps are kept because
          he was leaving all of his food and then we found a stash of wrappers
          under his bed.  Even though we have done this he is still leaving his
          food - if I give him a dish of spaghetti he is happy and he will eat
          it but that is not a very good diet when he needs to gain weight.  Is
          anybody else having this problem?  Any advice would be appreciated. 
          Thanks




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