DRUGS OF CHOICE FOR WHOM?

   

Piyush Diwan (picture from article, photography not acknowledged)

  

My son has had a friend sleep over tonight as a last hurrah with his favourite mates before we leave this town.  They are 10.

My son's friend is a particularly bright boy intent on his surrounds and an absolute handful to have around, but his joy in living virtually pulsates from him as he undertakes his activities with typical male gusto.  I've had to berate the pair of them several times but secretly laughed at their antics when they weren't looking.

After dinner my son's friend dutifully took his medication just as his mother instructed before she left him with us.

I have grave misgivings about parents, teachers, doctors, psychologists and the source of the push - the major drug companies - giving a child medication just so they are more compliant.  As a parent who is asked to give medication to her child on a daily basis for major medical difficulties I wonder if any of these parents, teachers, doctors, psychologists, etc, care about the long term effects of conformity drugs?

It was suggested to me that I take my daughter off singular on a daily basis because of the long term side-effects in continual use.  I refused. 

My little lady only progressed once she was on Singulair to mitigate eczma of the oesophagus being constantly gouged out by acid from (gastro) reflux.  Her reflux incidents were so violent it could be heard reaching her throat and her gagging was constant.  She never slept for more than 2 hours for the first 5 years of her life.

The paediatrician and I compromised, and she now has 5mg every second day instead of daily.  (Singulair is actually a drug prescribed for asthma, but asthma and eczma are linked).  I didn't care that her life was possibly to be shortened, I just wanted her out of pain so intense that sometimes she was bathed in sweat battling the acids rising at the back of her throat....burning and burning and burning....or sometimes pain so intense that she would bang her head against the nearest solid surface just to divert the pain to somewhere else for a while.......or being so stiff trying to resist what was going on inside of her that picking her up was like picking up an old fashioned porcelain doll - completely rigid.

I looked at my son's favourite daredevil friend and almost cried for him. Within 30 minutes of dutifully taking his pill, he was asleep completely bombed out.  He slept like a drunk person - or someone coming down from heavy drugs gained from the nearest dealer.

What a waste of zest for life.

How would these parents cope with children with genuine issues?

THE LONER - THE THEORY OF OTHERS

During a recent camping trip, I was invited to sit down around a camp fire to join a friend of mine.

My lovely friend had other friends with her, people who had grown up in the same town together and possessed staunch but narrow views on what constitutes normal and abnormal.

One member of the group looked at me with disdain when I first sat down and launched a series of questions to her familiars, asking as to whether they thought loners should try to join a group simply so they could say they were "a member".  She continued on to say perhaps loners should realise that trying to be like members of a particular group was a mistake because wanting be just like them would never work.  Parental influence was discussed and how social skills are developed.  The consensus by those present was that loners were who and what they were because of bad parenting.

From personal experience I am now a loner but not by choice.

My daughter has Cornelia De Lange Syndrome and with all of her autistic tendencies, her strange facial features, her inability to talk and her rather bizarre way of walking when in an unfamiliar environment has forced me to become a loner simply because society in general is in a quandary on how to act around human beings that do not fit 'the norm'.  They don't really know what to do or say, so therefore they reject any interaction at all.

A loner because of my parent's upbringing?  Pff!  I don't think so.

I didn't even have my daughter with me at the time. I wonder what her theory about certain persons invading a group's presence would have been if my daughter was there with me?  Any more compassionate perhaps?

I doubt it.

RESPITE FOR ALL

Respite for the family of a child with disabilities is a godsend for family relations.

Eungella, 70 kilometres or so west of Mackay in Queensland is truly a wonderland of beauty - valley views right to the ocean, gorgeous rainforest complete with orchids dripping from the trees, waterfalls, platypus viewing ..... and leeches!

We recently spent a weekend at home without our little weenie kid and partied hard! 

My husband and I can go out.  I can choose what I want to do for the day and I get an extra 2-3 hours of leisure simply because I don't have to sit next to her and help her feed herself.

Our children can have friends over without answering endless questions like "What's wrong with her?  Why can't she talk?  Why does she walk like that?" or simply dismissing the shocked look on their friend's faces the first time they meet her as a method of defense.  They are weary of filling in the details and wary of new friends' reaction. 

The past weekend was heavenly.

ENTHUSIASM OF THE NEW PARENT

 http://theumbrellanetwork.org/

Recently I attended a general session for anyone to turn up at the newly opened branch of the Umbrella Network.

Although it was gratifying to spend time with others discussing ways to improve one's own life within the constrictions that looking after special needs children bring, I almost envied the sense of hope that parents of young children with syndromes or disabilities still possess.  My daughter with Cornelia De Lange syndrome is 15 now and I am waaaaaaaay past believing in the fervent promises of all the therapists about all the things I can do to make my child better, or perhaps even "normal".

Even worse, I am sceptical to say the least in all of their "therapeutic" claims.  I know for a fact that one physiotherapist put back my daughter's progress toward walking by at least two years.  She walked at 7.

I found it very difficult not to instill wariness in wasting spending all that time, effort and money toward a goal that more often than not is unattainable for a child with a syndrome.  I just couldn't pass the baton of hopelessness and heartbreak on to the next person in the relay.

HAPPY LITTLE PEOPLE

If you're going to end up with a child modified by a Syndrome, Cornelia De Lange is a good one to deal with.

My girl always smiles.  If she isn't, she is some sort of pain.

I've met many Cornelia De Lange kids, and most of them are happy.  In a way, I'm glad that my girl doesn't talk, because about the only Cornelia De Lange kid I met that could talk very well chose to sing .......... nursery rhymes......... all    the    time!   And another thing I noticed when meeting others with Cornelia De Lange, although the boys often ended up with limb deformities, they could often speak some words.  The girls more often than not were 'whole' (if not quite the usual shape the rest of are) but I have never met one who can talk. 

The largest number I have met at any given time was an international convention in 2004, Sydney, Australia.  There were hundreds from all over the world.  It was truly comforting to speak to others in the very same predicament as we were.  It's a silent parallel world that we parents of 'disabled' kids have to live in and there are very few people who really understand the idiosyncrasies of a syndrome - and that goes for professionals as well.  I used to have to carry a folder around to any appointments with any information I could find so they had some guide as to what they were dealing with.  Thank God those days are over.  My girl is healthy, happy and well these days.

Cornelia De Lange

 

American Journal of Human Genetics

Welcome to my journey as a parent of a child with Cornelia De Lange Syndrome.

It's lonely.  

It's difficult.  

It's strange.  

It means to become an outcast along with your child as they grow older and bigger and their difference to others becomes more and more noticeable.

I find myself shrinking away from face to face contact with others simply so I don't have to face their pity, or their disgust, or sometimes even their fear of catching my misfortune.

My girl is now 15, so I have been through a heck of a lot of adversity over the years - medical, social, psychological, physical, educational.......

I'm reaching out to others in an effort to enter dialogue with others who are going through similar episodes in life to me. Please feel free to add anything you please even if your child is simply 'different' rather than suffering from this syndrome.  We need to support each other!