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

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!

An Encopresis Survivor’s guide to Social self confidence (Part 1)

Whenever it was recess/lunch time at school I spent the majority of time by myself, or I would talk to the teachers when they were doing their walk around on duty. “Why don’t you go hang out with your friends?” they would ask. “What friends?” was my constant reply. I could hang out with the bullies…plenty of them around. When the kids at school went to a party, school dance or ball..guess who wasn’t invited? Being treated as a loner for no other reason than “just because”, isn’t going to do anything good.

Having Encopresis with the uncontrollable soiling of underwear (and NO urge) is hard enough, having any chance of a social life is a long distant dream. When I see the “popular kids” or anyone with the huge self confidence or a social butterfly, I admit I’m envious. I cried a lot because of the bullying, being stabbed, work stolen and things thrown at me. Neither of these are related to having Encopresis, only I wasn’t self confident enough to not let it upset me.

The teenage years are where the affects of peer pressure and peer influence take hold. I was able to invite a few friends to my birthday, but rarely was I invited in return. Sometimes in the movies/TV shows there are scenes where the teenagers are hanging out with their friends (both guys and girls), dates and all the other fun stuff. When you have Encopresis (including myself), it isn’t a cliche but real. It can be so painful to watch other teenagers be happy and do “normal” things, but can only view it from the outside and no idea what it’s like to actually experience it for his/herself.

Once I left school after Graduation and no longer in contact of people from school life (especially the bullies), I am more able to gain my self confidence, and with it a sense of social confidence. Performing and books (writing, reading and the library) are always a part of me. I am my most happiest doing what I love, and no longer allow bullies to take control. I won’t be somewhere if the bullies are there. I always stayed true to myself, my family and my interests.

Being on stage, on set or writing and hanging out with like minded people means a lot to me. The more I know about myself and push my comfort zone, the more I can stand up for myself. I can walk down the street with a  spring in my step and talk to people. To tell someone I know that I had Enco isn’t easy, but it really is freeing. Here is a quote from a recent e-mail that a fellow Encopresis survivor sent me:

“I told my few friends in class that I had a disorder called Encopresis and for the first time in my life I no more feel shallow for myself and that they took it lightly now I feel much better around them.
Initially I repented telling them but I found that its better to let them know than hiding inside and killing my social life, I even discovered that its considerably a better experience than being sympathised. I am really doing good at this now and I am always thankful for your dedicated efforts towards enco veterans. I may be healing in a real slow pace but I found it as a healthy development and I am sure that my leap of faith did not go in vain”.

Understandably not everyone is ready to open up to someone they trust about this condition (myself included at the time). Opening up about this to someone you trust (close friend, teacher, family) is hard initially but is something I suggest you do. If suffer from Encopresis while at school for example, a trusting friend that knows what is happening and on your team, can hint that you need to change and be there for moral support. The first step is always the hardest.

Keep posted to my blog for Part 2 of this post. Don’t forget to subscribe, write/e-mail to The Ellen DeGeneres Show and give the Facebook page a LIKE ( https://www.facebook.com/helpencopresissurvivorseeellen?ref=hl ), and let me know how you go.

Do you have any suggestions? Have you shared your story with anyone else and was it helpful in gaining confidence in yourself and social confidence? Take care,

Dimity

What to pack for Encopresis emergencies

Hi everyone,

How are you today? As school has returned for the year (in Australia), I thought I would share with you some of my suggestions of things to keep handy for Encopresis emergencies. These tips may need to be adjusted accordingly for your son/daughter and be age appropriate.

A plastic container (as above) is portable, discreet and easy to clean.

When I was at school, I had a plastic bag handy (in my school backpack) that held:

  • 1 spare pair of clean underwear
  • a spare plastic bag to hold the soiled underwear separately
  • spare change of clothes,
  • spare women’s sanitary pads/pantie liners

My main problem was at my worst with Encopresis, I would change my soiled underwear for the clean one…and that would get soiled with no spares. To make sure you don’t get stuck with this I would highly suggest that you keep several pairs handy. I always got changed in the bathroom and wrap any soiled underwear in toilet paper before putting in plastic bag and disposing (or wait til come home and soak/wash it). Another tip is after changing (or doing any “number 2” bowel movements), wash hands thoroughly and put on some perfume/cologne (as mentioned earlier this may change depending on the age of the child/teenager/adult. Encopresis smell does linger, so ideally get changed as early as you can.

If the soiling is light/medium, changing Sanitary pads (or pantie liners) can be really helpful to remove any initial mess. If the stool is runny/soft it would leak around it occasionally. I personally prefer the ones with “Wings” on them (it holds it in place on the underwear and stops leaking). Still change the underwear when convenient.

School and especially bullies can become tricky around this area. If your parents can advice the school/school nurse of what is happening I would HIGHLY suggest that (and make sure they are aware of it throughout the year, incase they forget). Neither of my schools was aware of this condition (in a previous post I shared the story of my worst day with Enco and how the school handled it). ERIC UK have done school awareness programs, something I’m grateful for and hope that other countries do the same. Keep it discreet and the Encopresis pack discreet also. No one knew that I had the pack, apart from close family. One thing the bullies never knew about or had access to.

Other products available are Snap Lock bags (very useful), which you can substitute for the plastic bag initially mentioned. Baby wipes (and other wipes) are also something handy to have in the pack to wipe up any messes/hands. Soap & water is preferred but wipes are a suitable alternative. Just make sure that they don’t dry up (over time the alcohol dries up). There are small and large packs available. Remember to include a small portable hand sanitiser bottle/cream.

When I had Encopresis and at the comfort of my own home, I would sit on the toilet and read a book/play video game (or course wash my hands after and make sure the product is clean/sanitary). I’m not someone that can pee/poop on demand/under pressure. I love to be able to read or think about something else and just give the body time to do it’s “business”. Might take half an hour, might be more or less. However long it took, while relaxed and focusing on something else..trust me, it makes a world of difference. Positive difference. Perhaps in your Encopresis pack you/parent can supply a book/iPad (small). Just a suggestion.

If you haven’t created an Encopresis pack before, I highly recommend that you do now. Have you done this before? Do you have any recommendations for other parents out there? If there was a pack available (or a customisable pack), would you buy/use it? I’ll organise it if there’s enough demand for it. Don’t forget to Subscribe to this blog for more tips, tricks and inspiration. Also don’t forget to LIKE the Facebook page (and share it around): https://www.facebook.com/helpencopresissurvivorseeellen?ref=hl

Take care everyone and have a wonderful weekend ahead. I’m always available via e-mail: naturegirl015admin@themagicwithinus.com

Dimity

P.S. “With an open mind, and an open heart…anything is possible”

Does Encopresis mean bad parenting?

For many of the parents whom have children with Encopresis, a common thought that I hear a lot of is wondering if it’s a result of bad parenting. It breaks my heart when I hear this. My own parents have also been accused of being a bad parent or to not have brought me up right. This is a majorly bad assumption. My parents raised me correctly and I’m proud to be their daughter (only daughter).

Due to the many different (and many unknown) triggers of Encopresis, it’s very hard to pinpoint what exactly is the individual’s trigger. For some families it’s a food sensitivity, moving house, death in the family (or other traumatic experiences) or simply something wrong with the body. Sadly not many people (including fellow survivors) open up publically about the condition, leaving others in the dark and feel so alone. Myths and misconceptions breed including false accusations from people that don’t truly understand Encopresis. Everyone’s story and experiences are unique.

Each child responds differently in different situations, and respond accordingly. Parents do as best they can with all the love and support within them. Encopresis isn’t a result of bad parenting, and it never will be. As a vocally proud Encopresis Survivor, I will support all parents through this condition as best I can (including supporting fellow battlers and survivors). If you as a parent is reading this blog, please be rest assured that you are NOT a bad parent. Encopresis does not mean bad parenting and I stand by that. It’d be easier if my parents knew what was happening, but that’s not what happened. They aren’t bad parents. They love me and support me. This is what a parent does. It’s not their fault my body wasn’t working properly. Only a small percentage of people in the world are diagnosed (and not diagnosed officially) as having Encopresis. If I’m not at a certain developmental point in my life as I “should” be, how come I have been measured with a societal standard that doesn’t know anything about personally having Encopresis?

You are not bad parents (nor are the parents that have raised you if you are an Encopresis Survivor/battler with this). I’ll go onto The Ellen DeGeneres Show (if she’d have me) and verify that Encopresis does NOT mean, or result from, bad parenting. I’m here for you. There is light at the end of the tunnel.

What are your thoughts on this? Have you been accused of being a bad parent because of Encopresis? How does it make you feel?

You can always e-mail me: naturegirl015admin@themagicwithinus.com

Encopresis in Adults (even you aren’t alone in this)

I have recently received several e-mails from other Encopresis battlers whom are in their 20’s. Their identities are withheld, and I honour and respect their wishes. My heart goes out to each and every one of them and their families. Some are embarrassed to talk about it to others, understandably, and feel so alone.

A recent e-mail from a 20-something Encopresis-battler asked me about Encopresis and if it affects fertility or not. Whomever sent this (and you know who you are), you can be rest assured that as far as I know (and researched) Encopresis doesn’t negatively impact fertility because I know of someone who is also a 20-something Encopresis-battler and his girlfriend (that doesn’t have Encopresis) is pregnant!! I have also received e-mails/Facebook chats from parents whom have children with Encopresis but suffered similar incontinence problems as a youngster too. If I do find evidence of Encopresis affecting fertility (or Cancer) I will definitely let you know, my fellow readers.

The suggestions I have for parents whom have children with Encopresis are also useful things to consider if you are an adult with Encopresis. Drinking plenty of water (or Tea), daily probiotic, exercise regularly, check for any hidden dietary allergies (such as Gluten or dairy), have fibre in the diet, remain positive, don’t yell/punish (if you are the parent), have open and loving communication and never let Encopresis determine you or your life. Encopresis doesn’t last forever. Yes it may seem like it, and I too have often felt it to be a curse. Now I’m turning it into a blessing and helping you guys and everyone else I can about this condition (and the professionals too, if you wish to collaborate).

“Encopresis in adults” has been a common online search name, and with the recent e-mails I have received lately I thought it was something worth writing about today.

If you have any comments/feedback or suggestions, you are welcome to post your thoughts below, share my blog around or e-mail me: naturegirl015admin@themagicwithinus.com

Stay strong. YOU are NEVER alone with Encopresis. I am here for you all (and my love).

“With an open mind, and an open heart…anything is possible!” – Dimity. T