Alex and the dangers of Miralax (PEG 3350), told by the parent.

Hi everyone,

Below is a story about Alex, a 9 1/2 year old boy, and the day he almost lost his life because of Miralax (PEG 3350). This has been shared by a concerned parent (I have been given permission to also share this) to create awareness about this. Here is Alex’s story:

Alex (awarded by Make A Wish Foundation = PEG 3350). Age = 9 1/2 years old

 

Alex awarded by Make-A-Wish Foundation……………
It all started:
2-14-11 Alex barely made it into the ER before going into septic shock and then
cardiac arrest twice. We are thankful to the St. Frances ER for stabilizing Alex
after 18 minutes of CPR. He was then rushed to Mary Bridge Children’s Hospital and
operated on with us being told he may not make it. In order to save Alex’s
life…they removed his entire colon, appendix and several inches of his small
intestines.
Since Alex was 18 months old; he was placed on Miralax…. After being on doses of 17mg twice or more
a day…. It took until he was 9 1/2 until the unthinkable happened above.

Alex missed a ton of school from not feeling well… He stayed home the week before from just not feeling well. I took him to a naturalpathic doctor to have him tested for food allergies and visited the nurse practitioner who ran the special clinic
on constipation that Friday. What did they do…The nurse practitioner sent us home with a prescription of 17 capfuls at 17 mg of MIRALAX for an at home treatment….You read this right…17 entire doses at 17mg of Miralax within a day or two…that weekend !!!
As soon as we got home from school he started vomiting profusely dark brown substance. We found out later from the ER doctor he was vomiting his stool. Later that night…Alex seemed lethargic and
his eyes started rolling back into his head. His stomach felt like it was going
to explode. I rushed him into the nearest ER only for him to hang on until I
wheeled him into the Hospital for Alex to go into cardiac arrest.
We were then told that there was a strong chance that Alex may not survive during the transportation to The Mary Bridge Hospital. During his transport…once again needing to help him breath…Alex made it to the hospital for the everyone to pray that he would survive his surgery. They said Alex had gone septic and his entire Colon was black and had to be removed along with part of his small intestines that showed partial damage as well. They hospital had to place Alex in a coma since his he was so swollen and the doctors were going to have to go back in for more surgery. My baby…

2-17-11 Alex was then operated on 2 days later…also pulling through surgery.
He is my tough cookie! His blood pressure has been extremely low and recently
stabilized on 2-18. The hospital had to do several kidney dialysis to help
stabilize Alex due to renal failure. He has a couple more surgery’s to undergo before we know what the outcome will
be and to determine him mentally.

For years….I had a terrible feeling that something was just not right with my
son on so much Miralax. I have been reading all the side effects and never realized that the
way my son was acting had anything to do with this medication. Alex was depressed and overwhelmed. He would often be in a good mood and then suddenly the meanest little stinker in the world. He would be loving one moment and then
totally distant the next. Alex had tons of gas he just couldn’t release. My sweet little boy became more challenging as the years went by.

We consider Alex our miracle child…He basically died and was brought back
and survived!

If there are any other cases out there similar to ours…Please help us. I want
to make sure that the nurse practitioner does not make this mistake on any
other children out there.

*For more information and talk to other families, join the Facebook group: Parents Against Miralax (PEG 3350). Link here: https://www.facebook.com/groups/209540745755798/?hc_ref=NEWSFEED 

Or you can share your concerns on this form confidentially  here:

https://docs.google.com/forms/d/e/1FAIpQLScoHP2Mn_5PgSLwNDCIG0C3FdhMjKKL_cRPv9HZ5iUcd7ht7w/viewform

If you are interested in the FDA Petition Update: Polyethylene Glycol 3350 Laxatives and Children, click here:

https://docs.google.com/document/d/1oA9dKatIQW7Lo3uLpP_7Oh3bFc5nC-ryNl3BBSB9IgA/edit

Dimity

Guest Blogger: IMPRESS (Incontinence Management and PRevention through Engineering and ScienceS)

Hi everyone,

How are you? Today is my first ever Guest Blog post. Thank you to the team at IMPRESS (Incontinence Management and PRevention through Engineering and ScienceS) for all your hard work and dedication with #Incontinence research, and I look forward to collaborating with you more in the future. Here is what they’re all about and where you can find out more information.

Take care everyone,

Dimity

IMPRESS (logo)

About IMPRESS

IMPRESS (Incontinence Management and PRevention through Engineering and ScienceS) is a UK research project funded by the Engineering and Physical Sciences Research Council (EPSRC) and the National Institute of Health Research (NIHR). We are based in the School of Mechanical Engineering at the University of Leeds and co-ordinate IMPRESS in collaboration with the Applied Biomedical Engineering Group at University College London.

Our aim is to bring about a radical change in the research and development activities in incontinence technologies.

Why are we doing this?

Firstly because incontinence impacts significantly on quality of life for thousands of patients and it places a massive burden on the UK National Health Service (NHS). Secondly because where many areas of medical engineering share a growth in the engagement of research engineers and scientists to push forward the exploitation of emerging technologies, incontinence receives little attention within this sector and consequently current technological interventions remain limited in their function and effectiveness.

How are we doing this?

Since IMPRESS began in 2014 we have been facilitating the education of 20 Incontinence Technology Advocates, researchers chosen from the engineering and science community, about the current clinical challenges faced in treating and managing incontinence. We are using their knowledge and interactions to create a Self-Sustaining Network of patients, healthcare providers and engineering and science experts that will stimulate collaborations towards novel technological solutions for incontinence. To feed these new collaborations we have funded a first round of five pilot projects whose concepts encompass both urinary and faecal incontinence and may ultimately lead to a next generation of treatments and management products for this condition.

Where are we going next?

IMPRESS recently received further funding to continue its work until 2018 with a substantial budget to support more pilot projects, to develop selected projects into early-stage research work and to fund an IMPRESS Research fellow.

Results from our FI Workshop

In February 2016 IMPRESS ran a faecal incontinence workshop which focussed on ‘Technologies for Incontinence: What can we do better?’ Our delegates were a mixed audience of healthcare professionals, academics, patients, carers and industry representatives and we asked them to bring their personal experience and expertise to discuss this topic to help identify areas where we should focus future research. Four basic themes emerged.

PEOPLE who could benefit from new technology

Children, young adults and those with physical impairments are not well catered for. Many products don’t consider the complexities of designing for children and there are few options for those with limited dexterity or spinal cord injuries.

TECHNOLOGY how it influences people’s quality of life

It has the ability to empower, to address stigma and taboo with discreet solutions, and it has the potential to make assessment, treatment and management methods less invasive.

PRODUCTS where technology could be improved

Many products have seen little innovation for decades and issues such as skin irritation, smells and leaks are still a significant factor for patients.

POTENTIAL area for new technologies

It’s clear that much could be done to incrementally improve existing products through improvement in materials, applying smart systems that could sense, monitor and feedback, and by developing data collection tools that can assist patients and inform healthcare professionals.

Website: http://www.impress-network.com

Twitter @IMPRESSleeds

 

The Right To Go campaign (school toilets and Encopresis)

Hi everyone,

How are you? I hope you’re all going well, and returning to school life (for those that do). I found this picture recently on Facebook about a comic strip of a school and a pass to be able to go to the toilet during class time, as an excuse to do something less constructive. See diagram below:

School Hall Pass for toilet breaks (found on Facebook, 14th February 2016)

I’m not sure if this is meant to be humorous, however it did get me thinking. During my time as a student, going to the toilet during recess/lunch wasn’t a positive experience. The few times I went in there (especially in High School) made me want to get in quick and get out. Bullies in the classroom are hard enough to deal with on a normal day to day basis. Students laughing, gossiping and pressuring me into smoking cigarettes isn’t something that I was comfortable with. It was easier to go at home in peace and quiet. Already self conscious and low self esteem because of living with Encopresis meant that doing anything other than a tinkle was out of the question. Unfortunately neither  of the schools that I attended was aware of Encopresis, and how to treat their students with it.

ERIC UK (The Children’s continence charity) started a campaign in 2014 called, “The Right To Go” to highlight every child’s right to good care for a continence problem at school and to access safe and hygienic toilet facilities. Here is the link to their campaign for more information: http://www.eric.org.uk/Campaigns/TheRightToGo . I truly support this campaign, and plan on collaborating with the schools to help educate them on living with the condition, so other students don’t have to suffer a similar experience. Here in Australia and around the world.

Here is also a link to the “Toilet Tactics Kit” that the Continence Foundation of Australia have available as a resource. Link here: http://www.continence.org.au/pages/-toilet-tactics-kit-411.html .

 

Let me know what your thoughts are on this, or if you have anything else to share. Enjoy the new week ahead. Stay true to yourself, keep smiling and be authentic. @TheEllenShow #BeKindToOneAnother .

Dimity

Beauty Personified

Hey everyone,

How are you all? I hope that you are all doing very well and enjoying the new week ahead.

I received a beautiful poem written from a fellow Incontinence (Encopresis) survivor that I have been corresponding with for several years. Let me know what you think about it. Here it is:

BEAUTY PERSONIFIED

Looking around in wide and breadth

I went in search for a place where beauty had no dearth;

Found myself on a museum called ‘earth’

Below whose bower laid beauty well covered

 

I noticed the beautiful ocean, ‘so blue’!

But the beauty of blue was not so true!

The sky never did give us a clue….

But without the brocade over it, never the ocean had the ‘true blue ’

 

Came after the cozy night, appeared there the golden moon!!

Shining bright, but I don’t fall for it that soon

Wondering at the moon I discovered, she is filled with scars,

She was just trying to brazen staying that far

 

My search took me around the globe

Tired I was full of grief, singing in my lament;

I closed my eyes, after which mother earth opened her latch,

My questions all answered, I found a beauty for which had not match

 

I was scandalized but finally had a reason to smile

I felt like I just came out of exile!

This search left me satisfied

Oh! Mother Nature you are a beauty personified!

Encopresis survivor communication

Hi to all my readers out there,

How are you all doing? How is your weekend? Thank you for the e-mails, comments and posts and sharing your family story and experiences. I really appreciate it, respond and am here for you. As an Encopresis survivor myself, I know what it feels like to feel so alone with no one to talk to whom has gone thought it and open to talk to. Someone existing and real, someone that soils underwear with no idea why, someone that I can relate to. I’m here for you all.

I am available, open and interested in talking to your child/teenager/adult. Whether it’s on the phone, e-mail, writing a letter and creating a video message on YouTube. It doesn’t matter whether your child is 4, or in his/her 60’s. If receiving a personal letter from Santa Claus at Christmas time brightens up your child’s life, I know what it would be like to receive letters though out the year from a fellow Encopresis survivor.

I will give my postal address/phone number for the families that request it. The best ways to contact me are posting on my blog directly,

e-mail: naturegirl015admin@themagicwithinus.com

Facebook: https://www.facebook.com/helpencopresissurvivorseeellen

Twitter: @naturegirl015

YouTube: https://www.youtube.com/user/naturegirl015

Enjoy the weekend everyone. Stay strong, be yourself and never give up.

Dimity

Encopresis and beyond (4 Questions asked)

Hey everyone,

How are you all doing? I wish to give a huge warm welcome to all my new subscribers (and Thank You).

I was asked recently via e-mail from a parent, about my experiences with Encopresis with a different angle. Below are the questions, and after that will be my responses to them. I hope it helps you all, for those that need it, and feel free to post your thoughts to them or e-mail me: naturegirl015admin@themagicwithinus.com

1. At what age did your parents decide to let you take responsibility for managing your Encopresis on your own?

As a young child and more importantly as a teenager, I was given a plastic bag with a spare change of underwear (and can use the bag to put the soiled underwear in until home). However one spare change isn’t enough when that gets soiled literally as soon as it’s on (smell always lingered). After being constantly bullied when at the school bathrooms, I wouldn’t go in them during school hours unless absolutely necessary (ask your son/daughter about this), and never felt comfortable in there. My stools are very large (thanks to having Encopresis), that they have been known to block the toilet. Blocking the toilet in a public place is very embarrassing and highly increases low self esteem and very self conscious to the point of avoiding it. As a teenager (13 years old), I was old to put my dirty underwear in a bucket of Napisan (stain remover, in the laundry) to soak, which I would do. However when the underwear had the skid-mark type hard stools (and worse), then was yelled at and made to scrub it. This constantly made me cry my heart out to empty ears and very angry & disappointed with myself (as was everyone else). Admittedly and ashamedly this also led me to throw my underwear in the bin in secret to avoid the pain of going through it all, and survive and be a “normal” person. I was later found out (obviously had less underwear in the laundry), but it didn’t stop Encopresis or the emotional pain. Having the spare underwear handy is good and discreet at the time (not so discreet when people can smell it, except me). I wasn’t ever officially diagnosed nor had any X-rays/scans that are available now. I was also given a daily stool softener, Paraffin Oil (before dinner, and water after). It tasted yummy and makes me happy to think about it (it did from time to time give me Diarrhea or leave a oily residue). Did it make a difference? Honestly and in my personal experience, I definitely say YES! My bedroom was extended at age 15, when we did home renovations, and I was given my personal ensuite (and TV in my room), this also made all the difference…and the year I noticed my Encopresis had stopped.

2. Were you able to stop withholding cold turkey or did you still withhold and have the occasional accidents?

See above about personal ensuite/TV installed. I wouldn’t say that I “stopped withholding cold turkey” because I didn’t know that this was happening. No one, not even my parents, mentioned my clean underwear for a significant period of time. No one noticed, not even me. It was an advert on TV or a story or something I heard that when I thought about it was like, “Oh I stopped soiling…cool”, and then continued living.

3. Did you have an epiphany moment when you decided to change? What was that moment and what triggered it?

As mentioned previously.

4. Do you consider yourself to be completely free of Encopresis or do you, as an adult, still catch yourself withholding and take appropriate actions to avoid getting backed up?

Yes I do consider myself Encopresis-free..I’ve referred to myself as an “Encopresis Survivor”, and proud of it to admit it. If you or someone you know is Encopresis-free, then you’re an Encopresis survivor too. Keep in mind I will never say that I am in remission, of Enco (might explain this in another post). Admittedly I can’t pee/poop “on demand”, and this also means that I have difficulties to go successfully (go and not “get the urge but can’t physically go Now”) on the toilet on long haul flights. Sometimes I will get the pain in my abdomen for a few days (after long travel), but this eventually disappears after appropriate action has been initiated. I do continue to have large stools, although go more regularly (doesn’t have to be daily…it’s normal for me to NOT do a “number 2” daily). I prefer to poop at home/hotel.

Thank you for reading my blog. Please let me know in your comments below if you found it useful, any tips for others and what your thoughts are on this.

Don’t forget to subscribe and keep up to date.

Check out (and LIKE) the Facebook page: https://www.facebook.com/helpencopresissurvivorseeellen

or e-mail me: naturegirl015admin@themagicwithinus.com

Have a wonderful day, keep smiling and stay strong.

Dimity

Feed The Little Children

Hi Everyone,

How are you all? I’m going well here, getting busy with different projects. Recently I’ve been volunteering at a local non-for-profit charity called “Feed the Little Children”. It is a volunteer run local charity where we cook nutritious meals and deliver them to the local children whom would go to bed hungry otherwise.

I absolutely love it, and seeing all their smiling faces. The parents that I talk to are also very appreciative and welcoming. I go out and help out with the deliveries of the meals (there are other volunteers that cook the meals). At the moment we’re delivering over 300 meals in a night. At the moment it’s only run on the weekend (Friday and Saturday), but ideally FEED THE LITTLE CHILDREN want to run all year round. A lot of the houses are in badly lit areas and it can get really dark at night. Helping to feed the children and help those in need in my community is a wonderful opportunity, and feels truly humbling and amazing inside. For those that are interested in more information, here is the link to their website: http://feedthelittlechildren.org.au

Tomorrow I’ll be feeding the children. Definitely something I love to do on the weekend. Have a wonderful weekend everyone. Stay strong. Do YOU have anything planned for the weekend?

Always be kind to one another. With an open mind, and an open heart…anything is possible.

Dimity