Wednesday, April 19, 2017

Come, fly with me!

 by MJH
The question of whether certain things are just too stressful for my son with PWS is one that I frequently contemplate.  When is it better to limit his experiences to improve his chances of happiness?  Will repeated exposure to certain stressors really make them easier for him to cope with or do they just condemn him to the same suffering repeatedly?

Flights are a good example.  I never liked the idea of bringing my son with PWS on flights.  The thought of airports delays and changes to routine were enough to turn me off.  Still, airports and flying seemed like something he should get used to so when he was 4 years old we decided to start small.  Very small.  We brought him on a flight to a nearby island.  Total journey time: 5 minutes.  OK, it was not exactly a conventional flight.  For a start everyone had to be individually weighed beforehand so we could be appropriately dispersed to ensure balance in the tiny aircraft.  Also we got to chat to the pilot throughout the flight.  Still, it was a flight and it was successful and we went on to have (and sometimes enjoy) adventures much further afield.  

For the last several years, however, I have come home from each holiday involving a flight vowing "never again".  Up until now the time between the conclusion of one holiday and the planning of the next has always been sufficient for me to forget my past concerns.  Last year's airport meltdown, however, is taking longer to forget.

It began, like so many of its predecessors, when I was particularly ill-equipped to deal with it.  Our holiday routine (mum, dad, 13 year old with PWS and 6 year old sister) is big on the mantra of carers worldwide: we "share the care".   In other words, one parent gets to mind the child with PWS one day and the other child the next (on the second day ice cream gets eaten).  It does mean that mum and dad and the two siblings get to spend very little time together, but we have concluded that this is a price worth paying.

Last year I was minding my son for the outgoing journey when he abruptly stated that he had dreamt our plane was going to crash.  By now we were through security and I was lugging his bipap machine*, along with his various medications, appropriate snacks, activity books and miscellaneous essential extras towards the gate.

I tried reassurance: "lots of people get nervous before flights".  I tried distraction: " you can start your new Sudoku book now if you like".  I may have even tried humour.  But he was having none of it.  Instead he started shouting that by trying to get him to board the plane I was trying to KILL him as he KNEW that our plane was going to crash.  This quickly led him to assert (repeatedly) that parents don't try to kill their children.  Naturally his mind then jumped to the conclusion that I must not be his mother.  Oh no, he was being kidnapped and everyone in the departures lounge was going to know about it.  So there he went, storming ahead of me shouting that he was being kidnapped ("SHE IS NOT MY MOTHER" while I struggled (those bipap machines weigh a lot) to catch up, gather the items of clothing that he was discarding, and prepare the speech I thought I was going to have give to the police.   Of course the airport was also jam-packed with throngs of nicely-dressed and apparently relaxed people who got to observe the lengthy unfolding spectacle. 

While, of course, this falls squarely within the realm of first world problems and is inconsequential compared to what many people have to deal with it, it really was not fun.  And it was probably made worse by my knowledge that it could so easily have been avoided if we hadn't picked a holiday requiring a flight.

Of course I had long beforehand used up my full lifetime quota of embarrassment so that wasn't a problem.  Rather, the problem was that I had also used up most of my energy and quite a lot of my patience too.  

So this year we'll be driving somewhere on holidays. With two cars.  And if the going gets particularly rough whichever parent is "on" that day will be bringing the meltdown straight back home.

Looking back I find the incident more amusing than depressing.  That probably means that by this time next year I'll be ready to attempt a flight again.  Did I mention that when we finally got to our destination last year it also rained nonstop for 3 days out of 5?

 *Bipap machine: for sleep apnoea, used to help breathing during sleep

Tuesday, March 28, 2017

"Near enough is NOT good enough"

We are the Crowe family from Canberra; Vanessa, Richard, Sophie (22) and Angus (19).

Angus was diagnosed with PWS at the tender age of 8 weeks of age. Even after 19 years I can still remember receiving the phone call from our Paediatrician telling me our beautiful baby boy has PWS. I was looking at my darling, innocent son the whole time I was on the phone and I wondered what the future held for him; would he have friends?  Would he learn to drive?  The phone call brought devastating news for us and the information I was given over the phone by a previous PWS NSW spokesperson was not so great, in fact was so upsetting and heartbreaking, I decided at that moment I would do anything to give him the best chance ever. 

After visiting our Paediatrician the following day, the next stop was to visit the ACT Genetics Service. We met a wonderful geneticist, Dr Anne Turner, who gave us the best advice ever which even today I am so grateful for. Through our tears, she told us to take one day at a time and not to keep looking too far in to the future otherwise we would miss Angus’ milestones; she was so right. Our first PWS NSW (New South Wales) meeting was on our 5th wedding anniversary when Angus was 3 months old.

The piece of advice I would give a newly diagnosed family is (I can’t stress enough how important therapy)  speech, physio and occupational therapy. I did everything that was asked. Yes, it was hard work and was a constant reminder that we had a child with a disability but I truly believe Angus is the man he is today as a result of all the support he received as a baby and young child. 

Our mantra for Angus is “Near enough is not good enough”. Even when Angus was still in the NICU after being born he started speech and physiotherapy. He then had regular therapy from 8 weeks of age right up until he started school and then some. Angus attended therapy sometimes up to 3 times a week. I remember one year clocking up 50,000kms in my car between therapy and medical appointments. 

Angus is very active in Special Olympics. He attends swimming and plays basketball, football and cricket which is also a wonderful way of continuing to get physical therapy in to this life. I highly recommend Special Olympics.  Angus also played mainstream basketball -  it was such a thrill to see him play cricket and football; it meant he could now really be like his childhood heroes of sport.

Growing up, Angus was amazing. His long-term memory used to fascinate people. For example, he would ask friends what all the keys on their keyring would be used for and then each time he would see them he would go through each key and tell them what it was. His love of sport was his passport to the world. He still loves to find out what team you follow and will recall games and scores especially games against his beloved Raiders and St George or Sydney Swans. He has brightened our lives. We now follow cricket, tennis and darts and all types of footy; male and female teams. He is well known in Canberra and we can’t go anywhere without someone recognising him.

We were fortunate to be able to send Angus to Turner Primary here in Canberra. This is a School that runs a special education program alongside a mainstream program. We loved the fact that Angus had his own classroom with 6-8 other students to get the intense schooling he needed but also had the opportunity to be part of a mainstream school where acceptance of students with a disability was just the norm. 

He then went on to a special education high school until Year 9 when  it was suggested he attend a mainstream high school from Years 10 to 12. This filled us with fear as we now had to deal with a canteen!!! The support we had at Marist College, Canberra was brilliant. Yes, we had daily challenges and yes, Angus’ tiredness really made it hard for him not to be grumpy during the day, but we were so grateful that he was able to have the opportunity of being part of this community which focuses on social justice. It was a community that not only accepted him fully but also challenged him beyond our wildest dreams. Needless to say, we were so proud of him when he completed the Year 10 Outward Bound Program and especially when he graduated Year 12.

PWS is not only devastating for the individual but also for their families – there is no way around it. They are some of the most discriminated people in the world – unless you are immediate family or specialise in PWS, no one understands PWS as much as they would like to say they do. You are your son or daughter's advocate at all times. 

I still check in regularly to the PWS NSW and PWS Australia websites and follow the PWS USA Facebook page. They all keep me up to date with what is happening in the world of PWS. I still have times where getting out of bed each day can be a challenge but Angus has brought love and light to our whole family in ways we would never have thought possible. The promise we made to Angus when he was a baby still exists today. We recently bought a workwear and promotional business so Angus has a meaningful and structured working environment. Angus embroiders caps and weeds vinyl for pressing (where you peel the excess vinyl away from a printed logo and then work on the finer details of the logo with a vinyl picker to ensure it is ready to be pressed on to garments) and each day he is learning new skills on how to work in an office. During that phone call 19 years ago, I couldn’t imagine Angus learning to drive but Angus passed his Learners Licence and is now driving me to and from work. Getting his full licence will be a challenge but in the meantime, he is driving. We have come a long way on this journey and we still have a long way to go. We are currently looking into long term supported accommodation for Angus.


Monday, March 20, 2017

A Population-Based Profile of Prader-Willi Syndrome in Ireland

On March 9th the Irish Minister for Health, Simon Harris, launched a detailed report based on research commissioned by the Prader-Willi Syndrome Association Ireland (PWSAI).  The primary aim of the research was to map the support needs of families with a person with PWS throughout the life stages and to make recommendations regarding support provision.

PWS in Ireland
The Republic of Ireland has a population of 4.7 million including about 100 people who have been diagnosed with PWS.    Most of these are known to the PWSAI and 61 families in which there is a person with PWS participated in this research.

Two PWS-specific multidisciplinary clinics led by paediatric endocrinologists operate in Ireland and Growth Hormone Therapy, which was first licensed for use for people with PWS in Ireland in 2001, is now widely available.

The first and only PWS-specific group home in Ireland was opened in 2003.   

PWSAI was established in the 1980s as a support group for people with PWS and their families.  In 2002 it became a limited company and gained charity status.  PWSAI has no paid staff and is run entirely by family members of people with PWS.

The Findings
The research showed both positive and negatives.   One positive is that the age of diagnosis has been steadily decreasing in recent years with children born between 2012 and 2016 receiving their diagnosis within 4 weeks on average compared to 19 weeks for those born between 1999 and 2003.  The research also showed a significant decrease in the age at which children with PWS commence using Growth Hormone Therapy.  Children aged from 0-4 who were reported on in the study commenced using growth hormone at 1.7 years on average compared to 3.6 years for children aged 5-12 years.

The statistics in relation to the education and employment of people with PWS were less encouraging.  They showed that the majority of adults with PWS in Ireland have left school without any educational qualifications and that only one adult with PWS reported on in the study is currently in paid employment.

The report highlighted gaps in services too.  16 respondents reported that their family member with PWS would require full time residential care within 5 years.  A majority of respondents across all age groups also indicated that they required respite, but in most cases this was not available.  Among families with adults with PWS living at home only 25% reported receiving any respite.

As well as showing the many medical, psychiatric and behavioural challenges faced by people with PWS, the research also highlighted that PWS takes a heavy financial, physical and emotional toll on families and has a negative impact on siblings and family relationships.  The gendered distribution of care was also highlighted by the research - 50 of the 61 survey respondents were mothers of people with PWS, 3 were siblings and 8 were fathers.

Two professors from Trinity College Dublin (a psychiatrist and an endocrinologist)  generously gave of their time and expertise to oversee this research.  As part of the survey design they included questions and scales that had been developed around the world.

PWSAI  was fortunate to have received funding for the research from the Galway Cycle and relied on its own members and supporters for most of the work associated with promoting and instigating the project. 

While it is too soon to say if this research will lead to improved services for people with PWS in Ireland, the media coverage generated as a result of the research has already succeeded in shining a spotlight on the lives of people with PWS and their families.

If you are interested in reading the full research report you can access it here.   PWSAI is active on Facebook and Twitter and any queries about the research can be sent to

Monday, February 13, 2017

Chronic Sorrow

Losses are an integral part of chronic illness and disability. The term chronic sorrow,can be described as  "long-term periodic sadness" when you experience ongoing times of grief.   I know that it happens to us as we try to raise our son or daughter with PWS in a world that doesn't seem to notice or care.  It can also happen to our sons and daughters too, as they travel life's uneasy path.  They too, experience sadness for themselves as they see contemporaries fulfilling their lives in ways our kids can never do.

Chronic sorrow can hit you at any time without warning; it doesn't need  prompts or reminders, although these are around us all the time; it can just well up inside and make you feel vulnerable, alone, misunderstood, and cause sudden and intense grief.  Often it is cyclic and occurs when another son or daughter or just a random child you see, surpasses the ability of your child with PWS and you realise that no matter how hard you try, you cannot cure your child.

Having said that, I am not for one moment, not for a milli-second, saying you should ever stop trying to help and support your child, learn as much as you can about PWS, advocate, teach others, and never stop hoping and working towards a better understanding and even a cure.  What I am saying is that it is ok to grieve, ok to accept that grief doesn't ever go away, and ok to be kind to yourself when it hits.  I hope that the following article helps.

Chronic Sorrow is a term coined by sociologist Simon Olshanshy to describe the long-term reaction of parents who have a child with a disability. This pervasive reaction is often not recognized or understood by those around the parents--professionals, family and friends. These feelings of chronic sorrow are normal and to be expected and accepted, given the life-long implications for the family and child. 
Many factors can affect the intensity and exhibition of chronic sorrow: the parent's personalities, the severity of the disability, the nature of the disability and the adequacy of support and services provided. 

Chronic sorrow does not mean that the parents don't love or feel pride in their child. These feelings, and many other feelings, exist alongside the sadness. It is as if many threads are woven side by side, bright and dark, in the fabric of the parent's lives. They co-exist; they do not blend into one color, or feeling.  

Because ours is such a "can do" society, there is pressure on parents to quickly put their feelings of sadness away or deny them. Parents are told to "think positively" and "to get on with your lives." They are told that God has "selected" them to receive this special child because they are such strong people.  

These kinds of comments, while well meant, deny the validity or parental long-term grieving. The discomfort of observing pain in those we care about can be part of the reason for such comments from others. 

Grieving, however, is a process that takes time, often years. It's a prickly bush that one must go through, not jump over. However, there are ways to support the process of grieving. Most parents find support in a community of people who understand because they, too have lived the experience. It is lonely to be the only family on the block with a child with a disability. Being part of a support group or organization helps to combat feelings of isolation. 

Engaging in personal activities that do not center on the family member with a disability can help increase feelings of competency and self-worth. Counselling, especially at times of significant stressful milestones, can be useful. 

Chronic sorrow becomes a permanent part of the personality structure of most parents who have a child with a disability. It's a normal response. Its thread narrows and widens depending on life situations; most often it is accepted with courage. And, although permanent, if is not the dominant force in interactions with our children.  
The dominant forces are love and feelings of connectedness to them.  


The article comes from the Hydrocephalus Association Newsletter, Spring 1998, page 9, and was originally adapted from Meeting Ground, a publication of the Courage Center and is used with the stipulation that the original source be credited. 
For more information on the Hydrocephalus Association: 
870 Market Street # 955 San Francisco, California 94102  
            (415) 732-7040        

Friday, February 3, 2017

Gastrointestinal problems - the hidden enemy

Gastrointestinal problems – the hidden enemy
By Linda Thornton

(please note I am not a physician; I am a parent whose daughter with PWS has had some severe gastrointestinal problems which some of you may also have experienced or been unsure about)
In 1999 The Gathered View included an article about the discovery by PWS specialist Rob Wharton, M.D., of what he termed Acute Idiopathic Gastric Dilation. What Dr Wharton saw in his patient was that for some unknown (idiopathic) reason the stomach (gastric) was quickly (acute) pushed out (distended), causing the stomach tissues to die. If not immediately treated with surgery, this condition may lead to death.

Recently a great deal has been written about the issues around GI problems.  This is something that as a parent, I read and thought, “well, I’ve not seen any of this, so we’ll be fine”.  How wrong was I?  It’s not an easy topic to discuss among friends… (“well, now, tell me how many times do you poo a day and what do these look like?” is the best starter, but probably not a conversation-opener for many.)

I have always checked to see that my daughter is at least regular in her bowel movements and it’s always seemed so.  Looking back, and hindsight is a wonderful thing, I realise that she has had many bouts of diarrhoea which I put down to food that she had obviously stolen, or secreted away somewhere and eaten too much of, or she hadn’t been washing her hands thoroughly and has caught a bug.  
After all, we’ve always been told that people with PWS don’t vomit and that if there is a bug going around, it’s more likely to present as diarrhoea.  My daughter is now 31, and I started to notice the trend for diarrhoea about 10 years ago now.  And as I say, I always just put this down to her theft of foodstuffs.

I think I was wrong.

The PWS Diet
Diet in PWS has always been a corner-stone of how we manage the syndrome.  We’ve been told for years that the best way to help a person with PWS is to bulk up the meals, to add high-fibre foods that take longer to digest and stay in the tummy longer, thus keeping the notion of being ‘full’ more pronounced.  So, over the years I’ve happily watched my daughter eat the cores of apples (only the stalk was thrown away), the skins of Kiwi fruit, the gristle from chicken bones, nuts, seeds, berries, and I’ve loaded her plate with coleslaw, salads, tomatoes and similar.  I’ve been delighted at her ability to cheerfully eat broccoli stalks, the thick part of a cabbage, carrots, and other raw vegetables and fruits.  

I’ve counted calories, I’ve placed high-fibre foods in front of her all the time thinking I was doing the right thing.  Willingly she has eaten the skins, stalks, seeds, pips, of just about anything I have put in front of her, raw, or cooked.

I think I was wrong.

Suddenly in the past year, she has developed very scary acute abdominal pain.  So bad that she had more than once taken herself off to the Emergency Department of the local hospital – along with a staff person carrying all relevant information about PWS.  She has spent hours in the waiting room, patiently and painfully wanting to see a doctor.  She has been admitted overnight on several occasions and tests done for appendix, constipation, and various other extraneous things.  All of which have had no conclusion and all of which resulted in her being discharged from hospital, mostly with painkillers and laxatives.  On one occasion she was crying out for morphine to help with the pain, and this was put down to ‘attention-seeking’.  It didn’t matter how much information on PWS was taken for doctors to see, it simply was skimmed over, or disregarded.  Both her staff person and, on the occasions when I travelled down be with her, were ignored.   It is the greatest put-down you can experience… that knowing look from the medical expert when you try to tell them about PWS.  They’re not interested.  They are merely the ambulance at the bottom of the cliff.

However, after each time at the hospital things looked a little better and the laxatives did their job.  So back onto the high-fibre diet we went.  

I now know I was wrong.

The first time she told me she had vomited, I thought to myself, “she’s exaggerating, she’s never vomited before, why should she start now?”  It was a cup of coffee, last thing at night.  Went all over her sofa as it was so unexpected she really didn’t know what was happening.  The second time it happened, she scared herself badly, that she and her staff person went back to ED.  The wait was too long for her to cope with so, feeling better, she simply left and went home at 3am.

The third time, she was at home with us.  She’d been complaining of a stomach ache and later that evening, she asked me to feel her stomach.  It was distended and as hard as a rock.  I was very worried, particularly so as we live way out in the country away from medical help.  I put her to bed.
Within an hour she had vomited.  Projectile, compulsive, chaotic vomiting.  Fortunately this time she had made it to the bathroom, but no further than the door.  I could see everything she had eaten that day, nothing seemed digested at all.  

This time, I was scared.

The very next day I turned to our experts for help.  Asking Janalee Heinemann first, and then being guided to Dr Jim Loker, I can only say that without this immediate support and help, we could have been in a far worse position than I ever had imagined.

The first thing I was advised to do was to get her to a gastroenterologist for tests for gastroparesis.  Then at the same time I was to reduce her meals to 6 small (palm size) per day and to make these low-fibre.  She was not to eat meat, skins of fruit or vegetables, grain bread, salads, tomatoes, onions, anything from the cabbage family, or anything with pips which could stick in the lining of the stomach.  

Within hours, I had found a paper by Kate Beaver RN, and Barb Dorn, RN CNN, with a menu suitable for gastroparesis in PWS.  I am so grateful that this had already been done!  So together with Jim Loker’s dietary advice, I  mapped out a basic plan for the new diet.  The staff were fantastic and immediately put this into action, discarding from the cupboards and fridge all the foodstuffs she could no longer have.

What causes Gastroparesis
How on earth had this happened?  Surely I’d followed the rules?  Surely I’d understood about PWS and the diet’s special needs – after all, I’d run workshops on this very topic many times in the past, encouraging high-fibre foods, and foods slow to digest in the stomach.  

How could I be so wrong?

It seems there are many contributing factors which add to the misery of PWS.  Kate Beaver, MSW, CSW,  and Barb Dorn, RN, BSN cite in their paper:

Risk factors for Gastroparesis
Risk Factors Seen in Persons with PWS
Diabetes – most common cause
Diabetes – many persons with PWS have diabetes.
Adrenal and thyroid gland problems
Many persons with PWS have been found to have low functioning of their thyroid gland.
Certain drugs weaken the stomach – many antidepressants and heart medications
Many persons with PWS take antidepressant medications as part of behavior management and some may be taking heart medications.
Neurologic or brain disorders such as Parkinson’s, stroke and brain injury
We continue to learn the effects of PWS on brain functioning.

There was an immediate result with the small meals.  Well, two, if you like.  The first was that her ability to digest the smaller amounts was much, much easier.  The second was that she thoroughly enjoyed having these snack-meals, “I feel like I’m eating all day!” and it kept her bright and happy.

Convincing the doctors
I still needed to convince the doctors.  I’d already convinced myself, and her staff were grateful that something positive was forthcoming and this could be the end of the midnight sieges of the Emergency Department.
So I made an appointment with a dietician at the hospital, and another with her GP. The dietician was dubious.  “I think you should stick to the same diet as before.  We don’t know whether your guess at gastroparesis is the right one.”  She was right about one thing; we didn't know whether gastroparesis was the right diagnosis, but entirely wrong about sticking to the former diet.

Next appointment, the same day, was with her GP.  I asked the staff person to keep my daughter occupied while I did this appointment alone.  I had taken with me the GI papers from Ann Scheiman and the latest one from Barb Dorn and Kate Beaver.  I sat down and quietly told the doctor that I didn’t plan to leave his office until he had listened to me.  I said I didn’t need a diagnosis of “over-anxious mother” as I already had that, but I really and truly just wanted someone to listen.

Younger than me (they all are, these days), he assessed the situation and probably decided it would be quicker if he listened!  He wrote notes, he read the papers.  I sat there and waited.  He looked up and said, “I believe you are on to something.  We need to organise a gastroenterologist appointment.  We need to rule out this for a start."

I could have kissed him.  

I asked whether I could wait until he’d confirmed the gastro appointment as I had to travel some distance home and wanted to have things sorted before I left.  He said I should hear within the next 4-5 days and to keep up with the new diet.  It seemed so much better than just a few days before.
I waited the 4-5 days – just to be polite – before I rang the hospital gastroenterologist department and asked when I would be hearing about my daughter’s appointment.  The nurse searched the waiting list and said it would be about 3 months.  I cried.  She listened.  She said she would talk to the doctors and see whether my daughter could be squeezed in.

I waited the obligatory 2 days and phoned again.  Braver this time.  The nurse said she was about to call me and that she had been able to get an appointment within 3 weeks. 

I felt as though I was walking on eggshells for those 3 weeks.  Among all of us – the staff, my daughter and myself, we had worked out a menu that was satisfactory (and full of wonderful stuff, she thought, starting with white bread and ending with custard).

During this stressful time, she had to move house.  I decided to bring her home so that she wasn’t living in a house full of boxes and packing strewn all over the place.  This was a good move as I could also see how the new menu was working out.  It did mean that I was constantly in the kitchen preparing delicious little mini-meals for most of the day, but it was worth it.  There were new rules in place:  she was to sit up to the table to eat and not sit tucked up on the sofa.  This was to help with the digestion.  She could stand up to eat, if she wanted.  This is helpful especially after soup as it doesn’t sit in the stomach so long.  She was to walk after each little meal, at least 10 minutes which could add up to an hour’s exercise each day.  A good start.

Together, and with a staff person, we went to the gastroenterologist appointment.  Three days before our appointment I wrote to the doctor and sent him the two attachments which had become like my Ten Commandments.  I had carefully couched the email so that it didn’t sound like the mad mother from hell, but unemotionally and factually centered just asking him if he could read these as I was not sure how well PWS was understood in his world.

He was grateful!  I spent my Saturday reading and researching!”  Respect!  He listened, asked questions, did a physical examination and then said he would do a biopsy of the stomach followed by a “radio active scrambled egg breakfast” to follow the movement through the digestive system.

We started with the biopsy of the stomach – she was sedated, but not anaesthetised (which was good since she has an appalling record of coming out of an anaesthetic, fighting), and said she “felt the camera going down her throat” but thankfully she managed to stay with it.  

A couple of weeks later she underwent the gastric emptying study which meant she had no breakfast, arrived at the clinic and was given a small amount of scrambled egg whites, told to wait an hour when she would have another small meal of scrambled egg whites (during this time there were plenty of phone calls to me begging me to allow her to "have something to eat"!)  She lasted the distance with great support from her staff.  

And now for the interesting part

  • The results of the biopsy show no necrosis.  
  • There was no evidence of delayed gastric emptying  - in fact if anything, the gastric emptying was on the border of slightly rapid emptying.
So just what had been causing all the endless gastric problems that she was suffering for months and months?

A clinical visit to the Gastroenterologist to review the results of her tests  brought up the possible prognosis of Irritable Bowel Syndrome (IBS).  The Mao Clinic states:

"Irritable bowel syndrome (IBS) is a common disorder that affects the large intestine (colon). Irritable bowel syndrome commonly causes cramping, abdominal pain, bloating, gas, diarrhea and constipation. IBS is a chronic condition that you will need to manage long term."

Wrapping it up

 We have looked carefully at the diet, eliminating all high-fibre and wheat.  We've eliminated onions, and all the cabbage family as these for years had been causing really revolting wind problems; eliminated all fizzy drinks; kept coffee to a minimum and introduced decaffeinated drinks, we've kept to the 5 small meals a day and very slowly we've re-introduced fruits (peeled), soft vegetables and kept away from high fibre food.

There have been no further visits to the Emergency Department, no vomiting, no constipation and no gut pain.  We have decided to follow a diet which will manage the IBS condition.

I know this is no dinner-party topic, but I thought I would blog it just in case you notice a change in your son or daughter’s gut habits and to look at the amount of high-fibre we use in their diets.  It’s not gastroparesis, but it is definitely a part of what is a critical piece of the intestinal workings for all of us.

Read "Rethinking the PWS Diet" by Barb Dorn, RN and Kate Beaver, MSW, CSW.  On the same link, read more about Constipation in PWS, and Gastroparesis.

Read more about gastrointestinal problems in PWS including constipation