Transfer Newsletter 2 by rekgreen

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                                                               Newsletter of
                                                               Galactosaemia Society Of Australia, Inc.
                                                               11 Marlborough Street, College Park,
                                                               SA. 5069
                                                               AUSTRALIA
                                                               Telephone: (08) 3629219 Fax: (08) 332 7446


 Issue 2                                                                                                                      October 1994
Welcome to "Transfer" No.2.                                                                    all need to ask our specialists, "Would you
   Many more of you have made contact                                                          consider a research project into some
and we now have a healthy mailing list.                                                        facet of galactosaemia, in your
Please continue to write for publication,                                                      department?"
using a pen name if desired.                                                                      We are very lucky, and grateful, to have
   Our Contact Register of all who have                                                        the excellent medical supervision that we
contacted us is going to be sent out in a                                                      have here in Australia.
month's time. Those who don't wish to                                                             Nevertheless, there is endless
appear in this, please contact us.                                                             competition for the research dollar, and it
Addresses only will appear - no phone                                                          does not hurt to speak up for the cause
numbers.                                                                                       which we all have namely, an improved,
   Research into galactosaemia is the                                                          optimal outcome for those with
issue that is on our minds at the moment.                                                      galactosaemia.
   Our metabolic specialists are of course,                                                       Funding, of course, is the burning
well aware of the pressing need to                                                             question and is an issue we need to
undertake such research. In his article                                                        address.
"The Challenge of Galactosaemia", * Dr                                                            Thanks to all who have contributed to
Stanton Segal, summarises why the                                                              Transfer No.2.
research need is great, and in which areas
research should focus.
   Perhaps, with the interests of                                                                Elizabeth Craven                                       Wendy Reeves
galactosaemic people as our priority, we                                                             * lnt Pediatr. 1993; 8(1):125-132



                                                                             Index
      Editorial .................................................................................................. Page 1
      Letters ..................................................................................................... Page 2
      Pictorial .................................................................................................... Page 7
      Information Exchange ............................................................................ Page 9
      Diet .........   o ............................................................................................................................   Page 13
      Article Information ................................................................................. Page 16
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Sue Bevington
Chairperson,                                                                                                                                                                                                                                    •


U.K. Galactosaemia Support Group,
31 Cotysmore Road,
Sutton Coldfield,
West Midlands
England.

March 1994

   Many thanks for your letter and very many apologies for my great delay in replying.!
am currently awaiting the birth of our third child(due next week). I am now desperately
trying to catch up on the delayed letters before he/she decides to put in an appearance.
   Congratulations on setting up your group I know how much work that entails.Many
thanks for your cheque.We would obviously wish to become a part of your group and
receive your newsletters. Please let me know the cost. You certainly have our permission
to reproduce any of our Newsletters.
   I am currently putting the final touches to our next Newsletter (No.5 it is 14
months since our last) which I shall send. Thankfully we have recently had an offer from
one of our members to take over the producing of the Newsletter which will help
considerably. With the ever-growing membership and all the other enquiries I get daily
(plus the growing family) there are not enough hours in the day.
   In answer to your questions: you are quite right when you say there never seems to
be a consensus between doctors Andy and I went to a Galactosaemia Workshop in
Germany in November last year.Attending were top doctors from America and Europe
and we were amazed at how differing their opinions were.!t was almost frightening to
see how much they disagreed on the diet and treatment of the condition.
   Doctors in England have never had much faith in Uridine'! don't think it has ever
been used in this country.
   I gave the support groups (Germany,Austria,Switzerland,Holland and U.K.)
Combined Report in Germany at the Galactosaemia Workshop.I was pleased to hear
recently that Dr Holton (a leading bio-chemist at Southmead Hospital,Bristol,U.K.) has
arranged a meeting between the professionals from around the country to try and
answer some of the questions posed in our Report.
   There was a lot of discussion last year about the galactose in fruit and vegetables and
the final decision was to keep them in the diet.As Michael virtually lives on fruit and
vegetables I don't know what else I could have fed him.The diet is restrictive enough
without taking away the few things he is actually allowed and loves.
Keep in touch and best wishes.

                                                                                                                                                                                              Sue Bevington




Issue 2                                                     Page 2                                                                                                            Oct. 1994
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Tanya Connor                                        I don't sit back in life. I have goals and
Birregurra, Victoria.                            do my best to achieve them.
   (Tanya is 25 and has galactosaemia.              I will try anything once.
She has a daughter, aged 2, who is not              What I'm trying to say is - Parents,
galactosaemic. She has recently had              please hang in there and be patient, it's
another healthy little girl.   Ed.)              worth everything in the end. And to the
   As far as we know, my mother is the           ones with galactosaemia - never give up
only woman in New Zealand to give birth          and don't believe people when they say you
to two galactosaemic children. My                can't do it. Go out and do what you feel is
paren ts' first-born daughter died of            right. I did and I have no regrets.
galactosaemia when she was 18 months                Last September I did a 5 day "disabled
old. The doctors told Mum and Dad they           voyage" on the sail training ship Leeuwin.
would never have another, but I have it          This was my second voyage.
too.                                                The different people on board were
   I was told by my metabolic doctor that I      amazing - the spirit and ability to work as
would never have children naturally I            a team. We had deaf people on the voyage
have certainly proven that theory wrong.         and a fully-blind person - nothing stopped
   I have never had any speech                   them. The thrill of climbing up the sails in
impediments but have had to have my eyes         30 knot winds and not falling, or not
tested regularly as we were told                 having a fear of falling because your team
galactosaemia could cause cataracts.             is working with you, is unreal.
(When I was pregnant I had to watch my              I didn't have any problem with sea
diet carefully so the baby didn't get            sickness. I was one of the lucky ones!
cataracts).                                                                  Tammey Fiorini
   I hope I can be of further help to you all.
                             Tanya Connor        Wendy Alderson
                                                 Mitcham, Victoria.
Tammey Fiorini (19)                                  I really enjoyed the letters from other
 Stoneville, W.A.                                parents who went through similar trials
   (Tammey is legally blind through              and tribulations as I did. It makes you feel
cataracts (not common in treated                 like there are others who understand you
galactosaemia). Her achievements and             getting a little tense in certain situations.
wonderful spirit speak for themselves. -         I find children's parties and school "bring a
Ed.}                                             plate" days are the worst. Even though
   When I was young, through a lot of            teachers know there are dietary limits
people's attitudes I was restricted in doing     they cannot watch your child every .
things. People would say "You can't do           minute. I send a large "doggie bag" with
that, you can't see".                            Christopher each time but it's sometimes
   My parents have always been very              hard for Christopher to stay totally away
positive and supportive I don't know how         from sharing with all his peers. So far he's
they do it sometimes. lowe them                  been great but I still worry. Children's
everything.                                      parties are difficult because most of them
   I make the most out of my life. I do          are conducted at fast food places. I again
modelling,      waterskiing,      aerobics,      send all his food with Christopher but he
swimming and do work-outs at the gym.            feels very out of things. At home the



  Issue 2                               Page 3                                                                       Oct. 1994
                                         LETTERS
  family tends to all be on Christopher's diet    Ruth Haynes,
  so he doesn't need to feel different in his     Alexandra Hills Qld.
  own environment. We also feel it's such a          Philip and r have a 4 1/2 year old son,
  healthy diet that we all benefit in one way     Edward who was diagnosed with
  or another.                                     galactosaemia on the 6th day of his life.
     When Christopher was born he                 Edward was born in the Mater Hospital in
  appeared quite normal and healthy. It           Brisbane and we believe he is the first
  wasn't until r began his breast feeding that    baby at our clinic to be born in the
  he became really ill and after 3 days he        Brisbane Metro area. Edward progressed
  was taken from the hospital we were at to       very well for the first 18 months until he
  rcu at the Royal Women's Hospital               started to fall behind with his speech and
  Neonatal unit in Melbourne. He was              language development and fine motor
  actually pronounced dead twice but              skills. Edward's blood level tests had
  resuscitated and it was a further 5 days        always and still are very good. His
  before he was diagnosed. They were the          readings were always low so it is
  longest days of my life as r was not            disappointing that he has these problems
  admitted to that hospital but was still out     despite strict diet control. However
  at the private hospital. When he was            Edward started speech therapy at 3 and he
  finally diagnosed and we learnt that the        attends every week. His progress is slow
  condition was controllable with diet r was      but sure and he is presently using sign
  so relieved. It took time to change habits      language to express himself. We are
  and read all labels and double check            finding this of great benefit in easing his
  recipes etc, but now it is all second nature.   frustration at not being able to speak
  Christopher attends the Royal Children's        properly. The idea is that eventually the
  Hospital in Melbourne regularly for             sounds will accompany the signs, which is
  genetic/metabolic checkups and so far is        now happening. r would be interested to
  really well.                                    know if any other children have tried this.
     He often works with blocks or on abacus      r would also be interested to know to what
  to do maths and this seems to help.             extent the children's diet has been limited
  Christopher is actually repeating grade 2       in other States as we have quite a lot of
  at primary school this year and is doing        fruit and vegetable restrictions in our
  really well. He will be well ready to tackle    Brisbane clinic. r would welcome any
  grade 3 in 1994 thanks to the extra year in     phone calls or letters from other parents. r
  grade 2. His self confidence has grown and      enclose a photo of Edward and his sister
. he is pushing himself to do better each day.    Kristie.
     He reads at Grade 8 level and his
                                                                                Ruth Haynes
  spelling also improved greatly.
     Christopher will probably always need
  extra help at school but with ours and his      Beryl Copping,
  teacher's help he will be able to bring out     Brookton, WA
  his best. Christopher is a constant joy to        My second daughter Sandra Marie was
  our family and because of him it has made       born 1117174 and was a very pretty baby
  his older brother Luke and all his friends      who did nothing but sleep, so much that
  much more accepting of people who are           she had to be woken and fed. At about one
  special.                                        week old she looked jaundiced and was re-
                             Wendy Alderson       admitted to hospital. From then on it was



     Issue 2                              Page 4                         Oct. 1994
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    a downward slide, rushed from country                                                                                                                                    I have found that basic common sense
    N arrogin to Princess Margaret Hospital                                                                                                                               will see us through any trying times and
    at two weeks, there for a week undergoing                                                                                                                             maintaining the milk free diet isn't really
    all tests known to try to find a cause to her                                                                                                                         hard as they can eat almost all fruit and
    problem. We were advised to have Sandra                                                                                                                               vegetables and meat which give a good
    baptised as she was now very ill and                                                                                                                                  base for menus. Cooking is easy by using
    nothing could be found. Doctor Formby                                                                                                                                 a milk free margarine (costs twice as
    (now head of PMH) said not to give up, he                                                                                                                             much) and substituting water for milk I
    would repeat all the previous tests and                                                                                                                               make up any recipe I fancy and often get
    keep trying to find a cause. This he did                                                                                                                              complimented on my cakes (I'm not
    and in a simple urine test found an excess                                                                                                                            boasting just trying to show that other
    of sugar, from this lactose intolerance was                                                                                                                           people can't tell the difference between
    diagnosed and after Sandra's diet was                                                                                                                                 milk and milk free foods). My children are
    altered she improved dramatically. Within                                                                                                                             very healthy and apart from the odd cold
    a few days she was home, feeding well and                                                                                                                             and usual childhood illnesses and trips to
    gaining weight. The chemists at PMH                                                                                                                                   Perth for blood sugar counts they live very
    used to make up a special formula for                                                                                                                                 normal everyday lives the same as other
    Sandra that tasted ghastly and was                                                                                                                                    children. I must point out that I'm a
    mostly vitamins and minerals as there                                                                                                                                 chocolate lover and do not go without, the
    was no soya or like products available                                                                                                                                children have learnt from an early age
    then. No looking back! Apart from slight                                                                                                                              that they couldn't have milk etc. and we
    language problems when younger Sandra,                                                                                                                                still have milk and all its fattening by
    is a normal very healthy teenager. The                                                                                                                                products in the home. Milo, ice-cream,
    only time I had trouble with her and the                                                                                                                              bought biscuits etc. The first word they all
    milk-free diet was Easter and those                                                                                                                                   learnt to read was "milk" and if anything
    chocolate eggs. Nowadays they make                                                                                                                                    had that on its packaging they weren't to
    candy ones no problem with the boys.                                                                                                                                  have it, if they are not sure if it's milk or
       David Charles was born 6112/82 and on                                                                                                                              not don't have it. There are plenty of
    a milk-free diet from birth (diagnosed                                                                                                                                other foods available to substitute with
    these days from cord blood). Much easier                                                                                                                              and the children know it's for their own
    this time round, they had soya isolates                                                                                                                               health and well being.
    that just needed water added. Terrific                                                                                                                                   I am very proud of all my children but
    baby, strong and healthy. In a normal                                                                                                                                 especially of my three milk-free diet ones,
    class at school with some Special Ed                                                                                                                                  they never complain and are willing to
    support for language. Maths are his                                                                                                                                   under go all sorts of tests to further
    "thing" and he does very well. Mixes with                                                                                                                             research on Galactosaemia. It was
    other children and belongs to Cub Scouts,                                                                                                                             because of them, mainly Sandra, that the
    goes off camping etc.                                                                                                                                                 routine baby heel prick test now includes
       Thomas Alfred was born 4/10/84. This                                                                                                                               lactose tolerance.
    one was a surprise as I really expected                                                                                                                                  It is interesting to note that when
    him to be OK as the odds are 1-in-4 and I                                                                                                                             Sandra was diagnosed she was No. 3 in
    had two in five so I thought everything                                                                                                                               Australia, the others being in S .A. and
    would be normal. He is a bright young                                                                                                                                 Qld.
    man doing fairly well in school though a                                                                                                                                                         Beryl Copping
    speech problem tends to hinder his
    progress.


                  Issue 2                                                                                                             Page 5                                                                Oct. 1994
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                                          LETTERS···
    Pip, Barry and Stacey Geard.                    Merryl Howard,
    Rosny Park, Tasmania.                           Cabramatta, N.SW.
                                                       Christopher, now 4    1/2 , is our second
       I have found talking to mothers of
    children with allergies has been helpful        son. Christopher's galactosaemia was
    (milk seems to be a very common                 diagnosed through the Guthrie test when
    allergen); one child has a very severe          he was 7 days old. He went to hospital to
    reaction and cannot breathe if milk is          check for damage but none was found.
    ingested with severe rash if he so much         We have been very fortunate in that
    as touches an empty yogurt container.           Christopher's condition has never made
    The interesting thing however is that his       him ill. His speech was slow commencing
    mother mentioned there was a similar            but is now progressing normally. No
    reaction after he (2 years old) had pea         therapy was required.
    and ham soup - milk free of course - and           In April 1993, Gregory was born. He
    lentils! I said the Galactosaemic diet          went straight on to special formula and
    excluded those things until the child is        appears to have suffered no ill-effects
    older and have sent her a list of Stacey's      from his condition.
    diet.                                              Christopher does not, so far, appear to
       This particular Mum also said that           suffer from any of the potential problems
    people will give her child a forbidden food     that I have been warned about. Gregory
    in the belief that he will get used to it!      is also doing very well.
    She watches him like a hawk (as I am               Your article on Page 7 of "Transfer",
    also Stacey's shadow) and was very              issue No.1, was interesting. My dietician
    interested in our using a creche while I        has said that the problem is that even
    work - Stacey has been attending 12             milk-free chocolate is dodgy because cocoa
    months, no mishaps - although she has           beans are one of the various beans known
    yet to join the older, more active toddlers -   to yield lactose.
    18 months to 21/2.. I believe her speech                                   Merryl Howard
    will really improve when she does but we
    are wary of accidents.
      You may be interested to know that our
    local Family/Child/Education Support
    Centre has allocated an integration
    support worker to be with Stacey when                            NOTE
    she moves to the "big" creche. This has
    reassured the Creche staff and myself
    about Stacey's contact with older kids.            This is Issue No. 2 of our
    The support will be available for the first        newsletter "Transfer."
    few weeks until everyone is prepared and
                                                       If you would like to obtain
    used to the new routine.
      Well, that's about all from us in Tassie
                                                       Transfer No.1, please lets us
    - we are looking forward to the next               know and we will send you a
    newsletter.                                        copy.
                                    Pip Geard.




     Issue 2                               Page 6                         Oct. 1994
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       DISCLAIMER:
            The information provided is for your information, and is not intended to be used to
    engage in "self care." It is important to have your metabolic doctor discuss with you any
    concerns or questions that may arise from the information presented. See your metabolic
    doctor on a routine basis.
            We invite health professionals to correct us if we have not represented any item
,   accurately.

I
             SPEECH AND LANGUAGE - A PARENT'S PERSPECTIVE

                                                                       by J. L., South Australia
             It is a shock to find that anything is amiss in your child's speech/language area    it
    certainly was for us. With no knowledge or experience at all in such matters, we had
    everything to learn.
             There are a few approaches which would have been helpful for us; while no expert, I
    am passing them on, as one parent to another.
             Difficulties in this area are frequently found in galactosaemia. It is not merely the
    result of a general developmental delay, as it is also found in those within normal I.Q. range.
    What should be done? Here are some of the conclusions I have reached, from the point of view
    ofa parent.
    First Steps
             Recognise the problem early and get help. Discuss it with your metabolic doctor. Ask
    what should be done. Have the child assessed by a speech pathologist. This is possible within
    the hospital system or privately.
             Alert the speech pathologist to the link between galactosaemia and language
    difficulties. Ask the speech pathologist to obtain and read the following two articles (and any
    others.)::
             -"Speech and Language Deficits in Early Treated Children with Galactosaemia:"
    Susan B Waisbren PhD., T.R. Norman et al.: The Journal of Paediatrics 1983.
             -"Verbal Dyspraxia in Treated Galactosemic Patients": Neil R. Buist et aI., Advances
    in Neonatal Screening 1987.
    Telling The Child
             For some time, when my child asked me why she had to go regularly to the speech
    pathologist(and I doubt if many children really want to go to any extra-curricular "lesson"
    such as this, however pleasant the speech pathologist) I used to just say People go to speech                       II


    pathologists to be taught to speak really well."
             Later, when visits to the speech pathologist become part of our life and showed every
    sign of going on for several years, it was necessary to make a better explanation to my
    daughter. It is hard to make an explanation without hurting the child because, however you
    put it, the message is clearly that the child's speech needs plenty of help. In our case, our
    daughter did not realise that her words were hard to understand so it was a case of her
    saying "I am all right' and us saying "No, you are not.                                       II


             In such circumstances there is no ideal answer. In the end we said One funny thing                              II


    about galactosaemia is that some people with galactosaemia need help with their speech
    because they say words a bit differently, and that makes it hard for other people to



      Issue 2                              Page 9                                                                       Oct. 1994
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           understand everything they say. Nobody knows exactly why. The speech pathologists can help
           people with that sort of speech, and also if they have problems with any other areas to do with
           languages. "
                    Then a significant problem arose with our daughter's reading comprehension -
           where she would read a passage of information and find it difficult to answer questions on it.
           Speech pathologists also handle this sort of problem (as, of course, do Special Education
           teachers) and so again we made a similar sort of explanation to our daughter.
                    Perhaps there would have been a better way of handling this. We certainly found it a
           difficult area to handle, because our daughter was so upset about it all.
           Prolonged Speech Pathology
              If your child is having a prolonged course of speech pathology, keep in touch with the
                 speech pathologist. Ask for an assessment to be carried out at recommended intervals.
                 Ask that the assessment should be fully discussed with you, along with the speech
                 pathologist's "plan of action" for the problem areas.
                  If the speech pathology goes on for several years and the child starts to rebel about it,
                 then perhaps a course of several months each year could be adopted , rather then all
                 year every year.We also found it worked best to have a complete break in all the school
                 holidays.
    Language and Social Difficulties
            Language problems may also affect social interaction. Social language is a skill which
 . can be taught. An excellent publication in this area is "Room 14. A Social Language
't r ,'"

, . Program" by Carolyn C. Wilson. LinguiSystems, Inc. 1993.
            This is a set of 3 books (not available separately), these being an Instructor's Manual,
    an Activities Book and a Picture Book. The price is $120.00.
            Among other subjects, the books look at social language skills in the areas "Making
    and Keeping Friends", "Starting a Conversation", "Following Directions", "Taking Part in
    Discussions", and "When You're Teased".
            The books are easy to use. Parents could go through them with children, or an
    outside person could do this, such as the child's speech pathologist, a teacher at the s c h 0 0 I
    (who may even find it useful to take the whole class through the skills involved), a special
    education teacher or support aide to whom your child has access, or even an external tutor
    employed by yourself.
            If the cost is a bit steep, ask the speech pathologist if he/she would be interested in
    acquiring the set; it would certainly be useful in a professional library of that kind.
            "Room 14. A Social Language Program"is available through

                      Helios Books                              Helios Books
                      P.O. Box 307                              95 Gillies Street
                      Narabeen NSW 2101                         Adelaide SA 5000
                      Phone and Fax: (02) 905 5774              Phone (08) 232 0833
           Language and Educational Difficulties
                     Language problems may themselves create educational difficulties. Discuss this
                     with your child's teachers. Four useful recommendations for the teachers:
                           (i)    Give the student extra time to receive, assimilate and respond to all
                                  requests in teaching and other school-based situations.



             Issue 2                                                     Page 10             Oct. 1994
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                          Expect longer time for the student ifhe/she is to respond to visually
                          (ii)
                          presented material.
                   (iii) Avoid putting the student into potentially stressful situations in snappy
                          question-and-answer phases of work, except where the subject material is
                          familiar and teachers are confident that the student can achieve success.
                   (iv) Be appreciative at all times that the student has skills and abilities that
                          to some extent are masked by language difficulties.
      Computer Programs
              Listed below are some fun programs which give language skill areas a workout.
              These could be part of a multi-pronged approach to supplement the whole language
      area.
              Unfortunately, I know of no program which could assist in the useful "social language"
      area, as discussed above with reference to the "Room 14. a Social Language Program."
              A cleverly devised program along the lines of "Room 14" is exactly what would help
      many of our children.
              Being largely "self-administered", a computer program would also do away with the
      question of who should go through the social language course with the child. Parental
      "interference" in such areas can be resented, especially in adolescence.
              Aside from this, these are the programs which have been recommended; you may
      know of others:

                                                            Apple Mac                                                                                                                                                      IBM Compatible
                                                          Spell It Plus                                                                                                                                                                  Spellbound
                       My Own Stories                                                                                                                                                                                           Read a Rabbit
                 (sequencing, comprehension)                                                                                                                                                                                    (1), (2) and (3)
                                             Midnight Rescue                                                                                                                                                              Grammar Gremlins



                                                                                       Minimal Motor Dysfunction Groups
         Children with minimal motor dysfunction can be assisted by units set up to deal with this
      specifically. Actions such as skipping (with or without a rope), catching and throwing balls,
      somersaults etc are broken down into small components and taught step by step. It is most
      helpful. These units may operate in major children's hospitals. Ifno such units are near you,
      inquire from the main Physiotherapists Group or Board in your State whether they have any
...   specialists in "Developmental Gym" who do the same sort of work as the "Minimal Motor
      Dysfunction Units".
•        Regular professional physical and psychological monitoring of your child will lead to any
      problems being picked up early and the child being given the help needed at the time it is
      most useful.
        It can be very usefully socially for the child who is experiencing difficulties to be taught
      how to "run in" and skip with a rope, or how to throw a ball better. These are helpful
      playground skills.


        Issue 2                                                                                                             Page 11                                                                                                                                   Oct. 1994
•




                                        Medic Alert

       ... especially for people with a hidden                            A brand of Hib Vaccine used in
    medical condition.                                                 Australia contains lactose: - "Pedvax",
       Medic        Alert     is     recognised                        manufactured by Merck Sharp & Dohme.
    internationally by medical, health and                                However, two other brands used in
    first-aid service organisations.                                   Australia are lactose free. These are
       The relevant information is engraved on                         HibTitre by Lederle Laboratories, and
    the back of the Medic Alert emblem, which                          ActHib, by Pasture Merieux (Aust.).
    may be worn as a bracelet or necklet.                                 Always check all medications and
                                                                       vitamin/calcium supplements. Those used
                                                                       on a regular basis should be rechecked
                                                                       from time to time. The manufacturers
         D
           -
         ~~),~   E
                                             •                         should be contacted directly for a reliable
         I _, .. R
         C '"""' T
                                                                       answer. The Drug Information service run
             •
                                                                       at major hospitals will contact the
                                                                       manufacturers for you.             "Product
    How Medic Alert Protects                                           Information" documents supplied with the
                                                                       medication or supplement can be
                                                                       incomplete or superceded, hence the
               OIIo.ErES
               0.. ttoSUl '"
              "U EIt~1C
               ~"""""l1'"
                        l
                          to                                           necessity to inquire direct to the makers.
                                 -...
                tooOCIl




                               ,:!r;~
                               ,
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                                        •
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                                   •




     • Your Link with Life                    • Wallet Card        "




                                                   -..



                                                                                   IMPORTANT
                                                                                    REMINDER
    • The Hot Line to Life
                                             .Computer Life Link

        Phone (1800) 88 2222 or (08) 274 0361                                  Do not assume that any
                                                                             problem discussed in this
                                                                             Newsletter are going to
                                                                             apply in your case   some
                                                                             people with galactosaemia
                                                                             seem to experience no
                                                                             problems. Galactosaemia
                                                                             is known to result in a
                                                                             wide range of outcomes.




       Issue 2                                                     Page 12                   Oct. 1994
                                          ·


                                                        DIET
              LIST OF UNACCEPTABLE FOODS INGREDIENTS                                            * (U.S.A.)
         The foods and ingredients listed below are considered UNACCEPTABLE in the diet for children with
     galactosemia. They all contain either lactose or galactose, the two compounds which are forbidden in the
     galactosemic diet. When you are shopping for foods which are processed in any way, be sure to check that none
     of these ingredients are listed on the label.
                 Beet Powder (PGC*)                    Milk
                 Butter                                Milk Chocolate
                 Buttermilk                            Milk Derivatives
                 Buttermilk Solids                     Milk Solids
                 Calcium Caseinate                     MSG or Monosodium Glutamate****
                 Casein                                Nonfat Dry Milk
                 Cheese                                Nonfat Dry Milk Solids
                 Cream                                 Nonfat Milk
                 Dough Conditioners*                   Organ Meats (liver,heart, kidney, brains sweetbreads, pancreas)
                 Dried Cheese                          Peas
                 Dried Cream                           Sodium Caseinate
                 Dry Milk                              Sour Cream
                 Dry Milk Protein                      Soy Sauce*****
                 Hydrolyzed Protein **                 Soy Sauce Powder (PGC*)
                 Lactalbumin                           Tragacanth Gum
                 Lactose                               Whey and Whey Solids
                 Lactostearin                          Yogurt
                 Margarine***
    Note: Lactate, Lactic acid and Lactylate DO NOT contain lactose and are ACCEPTABLE ingredients.
    (PGC*) Added by PGC Food Coordinator
    *      Dough conditioners may include caseinates which are UNACCEPTABLE. Most labels specify the name
           of the conditioner which is added to the product. If not, contact the company to make sure that all are
           acceptable.
    **     Hydrolyzed Protein is UNACCEPTABLE and is commonly found in canned meats. Hydrolyzed Vegetable
           Protein, however is acceptable.
    *** A few diet margarines do not contain nonfat dry milk. Check labels before using any brand. If
           "margarine" is listed as an ingredient in any processed food, consider the product UNACCEPTABLE.
    **** MSG or Monosodium Glutamate itself is acceptable; however, some MSG's may contain lactose extenders.
           It is best to avoid MSG whenever possible.
    ***** Soy Sauce is UNACCEPTABLE ifit is fermented. Brands must be checked before including this in the
           galactosemic diet.


             * This is reproduced from the newsletter of the USA group II Parents of
                                              1I
          Galactosemic Children Inc. It is a U.S.A. list. We in Australia would include more
-                                              ll
          items on the IIUnacceptable list such as the legume (pea and bean) group of foods.
          This covers food ingredients such as cocoa beans (chocolate); soy protein (the
          commercial one often used has quite an amount of the soy carbohydrate - the "bad II
          part - along with the protein. This is different from pure-grade soy isolate, which is
          acceptable and is used in soy infant formulas); large amounts of soy flour; etc.
             Discuss any concerns with your dietician.



      Issue 2                                       Page 13                                 Oct. 1994
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                                                                                                                 so many languages. However, the idea is a
       Avoiding Diet Accidents
                                                                                                                 good one. In a restaurant, even it could
   Some of our members have experienced                                                                          often be useful to produce an official-
difficulties with unaware people giving the                                                                      looking card to accompany your "special
wrong food to young galactosaemic                                                                                diet" explanation.
children.                                                                                                           We will give some thought to planning
   At pre-school or creche, supply a large                                                                       one. Send in your ideas!
clear notice with the child's name and
"Special Diet" underlined in red, with the                                                                               Callard and Bowser Desser Nougat
details of the diet. Attach this to the wall
in a prominent position in the food
preparation area. Discuss the diet and                                                                             This is a pleasant nougat confection. We
why it is needed with all the caregivers.                                                                        wrote to the U.K. manufacturer, who gave
   At school, again discuss the diet with                                                                        an assurance that it is lactose-free.
the school's Principal, with the class
teacher and any additional teachers. Ask
that sharing food between the children be                                                                                                                         Chocolate
discouraged. Ask that your child's
classmates should be told about the special                                                                         In the UK and USA the galactosaemia
diet, and asked not to give food or drink to                                                                     diet allows some milk-free chocolate to be
your child.                                                                                                      included either in the form of milk free
   Put all this in writing to the school,                                                                        pure cocoa powders, or as block chocolate
including the fact that any medication                                                                           confectionery which dos not include any
given must be lactose- free.                                                                                     lactose component.
   For very young children, there is an                                                                             In Australia it appears to be universal
interesting practice in Holland where they                                                                       that chocolate in any form is forbidden due
have a badge pinned on them marked                                                                               to the fact that it derives from the cocoa
"Special Diet" If you do this, ensure it is a                                                                    bean. As a legume, the cocoa bean (as well
safe badge that will not hurt the child. Do                                                                      as the carob bean) yields lactose and hence
not leave a baby unattended with a badge                                                                         is avoided.
pinned on, as the badge may fall a part if                                                                          The diet for galactosaemia is always
fiddled with and cause harm to the baby.                                                                         strictly lactose-free and avoids organ
                                                                                                                 meats, but different approaches are taken
                                                                                                                 to items such as legume, gums,fruits,
                                ''Diet Passport"                                                                 vegetables, etc. Even within Australia
                                                                                                                 there are variations, eg .. in one State
  In the United Kingdom the Support                                                                              matured cheese is allowed; in S.A. it was
Group has created a "diet-passport" which                                                                        once allowed but then disallowed as
exists in a lot of languages. This makes it                                                                      analysis revealed a "trace" of lactose.
possible to go shopping and eat in                                                                                  It is confusing for parents to feel there is
restaurants everywhere in Europe (West                                                                           not one "perfect" diet which is used world-
and East), They even have an Arabian                                                                             wide.
and Vietnamese translation.
                                                                                                                    We can only be guided by our dieticians,
  Here we do not have the same need for



  Issue 2                                                               Page 14                                                                                                 Oct. 1994
                           ---   ~




and keep in touch with what is going on         in the past, but was now only added
everywhere else.                                occasionally. The maximum proportion if
                                                organ meat was added was 2%. A dietician
           Luncheon Meat                        at the Adelaide Children's Hospital
                                                commented that this is acceptable, given
    This type of product, along with items      the small percentage of organ meat and
such as "fritz", "devon" etc should only be     the fact that large quantities of fritz are
used after very careful inquiries from the      not normally eaten.
manufacturer. The inquiries should be              When question as to whether any
repeated from time to time as                   factory practice could allow milk, milk
manufacturing practices can and do              powder or any such item to creep into the
change.                                         final product, an assurance was given that
   The starting point is the ingredient list,   this could not happen.
which should of course not include any             Therefore it appears that this product is
lactose yielding ingredient.                    an acceptable inclusion in the
   Soy products, such as soy protein, are       galactosaemia diet. Your dietician or you
often listed on this type of product.           should carry out similar careful checks
Commercial soy protein is not a soy             with other products of this type to ensure
protein "isolate". The commercial product       the safety of their use.
contains a varying amount of soy
carbohydrate         the galactose-yielding                 Processed Foods
portion of the soy bean.
                                                                      by Elizabeth Craven
   Whether small amounts of soy                    Sometimes a processed or manufactured food
carbohydrate       such as in the soy protein   contains unacceptable ingredients despite the
ingredient, or in soy flour    are acceptable   ingredient list seeming perfectly all right.
in the galactosaemia diet depend on the         There are several ways this can occur.
approach taken.                                 • The ingredient should be listed but for a
   Most dieticians would say that small           variety of reasons is not.           This
amounts are acceptable.                           sometimes does occur and only rigorous
   An inquiry should now be made to the           checking will bring it to light.
manufacturer regarding use of organ meat          Sometimes it is carelessness or poor
in the product.                                   organisation on the part of the
                                                  manufacturer. It has also been known
   Some products do use organ meat, some
                                                  to occur when one company is taken
do not, and some add it from time to time.
                                                  over by another, or when labels or
If it is used, ask what percentage it would
                                                  packaging are changed, or when the
be of the total. For the purposes of this
                                                  recipe changes but the manufacturer
article, a "fritz"/"devon" product was
                                                  decides (unlawfully) to use up the
investigated in S.A. - a plastic-wrapped
                                                  backlog of existing labels or packaging
item referred to by the manufacturers,
                                                  which display the old superseded
George Chapman Pty Ltd of Nairne, S.A.
                                                  ingredient list.
as "plastic fritz" (as opposed to the
                                                • There is always the possibility, too, of
unlabelled product called "bung fritz".)
                                                  accidental or careless factory - floor
   The Quality Control department said            practices of which upper-level
that organ meat had been used routinely           management is unaware.



   Issue 2                              Page 15                           Oct. 1994
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    • Factory floor practices may lead to an                                                                                             regular basis, as such lists can and do alter
       unacceptable ingredient being included. For                                                                                       from time to time.
       instance, a soy drink may be mixed in a vat                                                                                           Arnott's Biscuits produce a list of biscuit
       which has just been used to mix a cow's milk                                                                                      types "Free From Dairy Products".
       product, leading to traces of lactose in the                                                                                      • When checking it may be preferable to ask
       soy drink.                                                                                                                            for a complete ingredient list if available,
       A practice may occur where, ego in biscuit                                                                                            rather than to supply a list of ingredients
    manufacture, some "carry-over" dough from one                                                                                            which you hope the product will not include.
    type of biscuit is added to a different dough.                                                                                           The complete list may include items which
    Some lactose may thus enter a dough which, on                                                                                            require checking but which may not have
    the face of it, should contain none.                                                                                                     been on your list of unacceptable ingredients.
       For this reason, with food manufacturers                                                                                              If possible speak to the Food Technologist, or
    which produce a wide range of products - such                                                                                            to a person of importance wi thin the
    as a biscuit manufacturer - it is recommended                                                                                            company, and emphasise that the diet is an
    that your dietician or you should inquire from                                                                                           important medical diet for a rare but serious
    that manufacturer which they consider lactose-                                                                                           disorder.
    free, or dairy product free. Only products from                                                                                      It is helpful if your dietician can do this
    that list should be used.                                                                                                            checking for you. However, you may have to
       Your queries should be made again on a                                                                                            occasionally do some yourself.
         ',',' ,
.                                                                                                                                                                                                                                                                                                                            -- - - .
.                                                                                                                                                                                                                                                                                                                               -'      ---



I                                                                  ""   ..::,   '   ,."       -




Medical Articles - An easy way to obtain.                                                                                                                                  Inter Library Loan System and which
   Many of us would like to obtain and read                                                                                                                                contains a good medical library.
articles dealing with aspects of galactosaemia,                                                                                                                            (University Libraries are often good ones).
but are daunted by the thought of going to a                                                                                                                               Ask a librarian to help you if necessary.
medical library, hunting for relevant articles,                                                                                                                            Ring the appropriate library and speak to
photocopying them etc.                                                                                                                                                     the Inter Library Loans Officer. Explain
   There is an easier way to obtain articles,                                                                                                                              that you want photocopies of medical
thought it is fairly slow - weeks rather than                                                                                                                              articles. A fee will be charged per article,
days.                                                                                                                                                                      eg $8.00 to $12.00. However, if you are
   This is how to go about it.                                                                                                                                             from a charitable group (Galactosaemia
   1. Obtain a medical print-out                                                                                                                                           Society of Aust Inc., our group, is a
                                                                                                                                                                           charitable body), the fee may be reduced or
      Ask your doctor to do this for you. Give
                                                                                                                                                                           waived.
      himlher the "key-words" necessary to find
      relevant articles: suggested ones (all of                                                                                                                            Take in (or post) the print-out with the
      them       together)     are    "galactose;                                                                                                                          circled articles. If you post it, mark on it
      galactosaemia; galactose-I-phosphate                                                                                                                                 clearly the name of the Inter Library
      uridyl transferase deficiency".                                                                                                                                      Loans Officer whom you spoke to.
      You will need to give the doctor the fee                                                                                                                             The articles will be photocopied and sent
      which he has to payout to do this - it is                                                                                                                            to you. Probably you will have to cut out
      not large.                                                                                                                                                           the pages, assemble them in their proper
                                                                                                                                                                           order and staple them.
      When you obtain the print-out, photocopy
      it so you retain one copy. Then in red,                                                                                                                              Medical articles can be heavy going. At
      circle the articles you would like to obtain.                                                                                                                        the top of each article appears a
      Articles printed within the last two or                                                                                                                              "headnote" which is a summary. This may
      three years are the most useful.                                                                                                                                     be sufficient for your purpose, or assist you
                                                                                                                                                                           in understanding the difficult parts of the
   2. Obtaininli the articles
                                                                                                                                                                           article.
      Find a library which takes part in the


      Issue 2                                                                                                 Page 16                                                                                                                        Oct. 1994

								
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