PEAP - Physician Education Awareness Program

Our state has an organization whose mission is to support families with children with special care needs. It is called Family Connections of SC.  While they have many programs, one that I particularly like is their Medical Education Programs:  Medical students and pediatric and family practice residents engage with families in home visits and connections outside the role of physician/patient to better understand family-centered care and the medical home.

Our local upstate chapter of Family Connections works with parents and 3rd year USC med students doing their residencies at Greenville Hospital System to provide PEAP - Physician Education Awareness Program.  I have hosted this twice at my house, and hope to do it many more times in the future! It's a wonderful opportunity to get young doctors in the homes of our "incompatible" children, and show them what they are REALLY like. I also get to explain how seeing a child in the hospital, or even for an office visit, does not give any medical professional an accurate picture of who the child really is and what they can accomplish.

This is from the Jan 2013 PEAP session. These 3 doctors hopefully have a more positive view of trisomy 18 in their careers.

This is Maddie, she as a 2q microdeletion and tag-teamed a PEAP session at my house in March 2012.

Our March 2012 session had a total of 6 med students. Here are four of them.

Here are the other two med students with Rebekah, my son - Jeremiah, and Family Connections' Michelle Johnson who coordinates this program in our area.

I polled my special needs families and trisomy families for input on what they would want to tell doctors and medical professionals about our children. This is what we came up with...

PEAP – Physicians Education Awareness Program

What Do You Do When You Have A Pediatric Patient With Multiple or Life-Threatening Disabilities?

1.  This is a child first and foremost 

• Use People-First Language (I included some PFL handouts which was already part of what Family Connections gave the Med Students.)
• People First Language (PFL) represents more respectful, accurate ways of communicating. People with disabilities are not their diagnoses or disabilities; they are people, first. PFL is not about "political correctness," it's about good manners and "the golden rule." 
• http://www.disabilityisnatural.com/
• Use the child’s name.
• Speak of an unborn child as a person, not a thing.
• Do not make assumptions about the capabilities of a child that you have only spent 5 minutes or less with. Ask to see pictures of the child in his/her home environment. Ask what milestones the child has reached. Ask how the child communicates. Children may be “nonverbal”, but still communicate effectively!
• Even if managing care for a child that has 10% chance to survive, that child still DOES have a chance. They are not “incompatible”, care is not “futile”.

2.  Be Open To Interventions And Care Options

• Parents (and doctors) can be realistic AND hopeful at the same time. Being realistic would include surgery recovery times, more aggressive and proactive care, etc.
• Parents want choices – do not force or assume palliative care or hospice is always in order for a specific child.
• Tell the WHOLE truth – not just the medical books truth. Give options and realistic expectations. If you don’t know what those are, don’t make assumptions. Be honest about it, or seek out documentation to support your views.
• Intervention is not always wanted to prolong life. Sometimes intervention is necessary to improve the quality of life a child has – regardless of how long they will be here.
• Give parents the information they need to make informed decisions. Don’t assert your personal opinion into the mix.
• SUPPORT A PARENT’S DECISION, whether you agree with it or not. Don’t question why a child is full code.

3.  Each Situation Is Unique

• Treat the child, not the syndrome. Each child is unique. Two children with the same syndrome will not have the same outcomes and issues. Don’t treat them with cookie-cutter care.
• Treat the family, not the medical issue. Each family is unique. The care path that one family takes will not be the same as another family facing a similar situation. Adjust your care to the needs of each family and child.
• Do not speak down to the parents, or treat them like they are idiots. For parents with an unborn child or infant, be compassionate. For parents with older children, they are probably far more aware of their child’s condition than you are.

4. Educate Yourself - Be Willing To Learn

• What you learned in school does not necessarily reflect “reality”.
• Listen to the parents – they will no doubt have insight into their child and maybe even the condition if it is something you have not had extensive experience with.
• Network with families so you can grow beyond book and clinical knowledge to understand how families manage caring for a child with disabilities.

5. Be Compassionate

• While you may see a child with a hopeless future, the parents see a child they love and cherish – no matter what. Don’t discount that love. A child cannot be replaced (“you can always have another baby”). One child is not more “valuable” than another (“save your time/effort/money for your other children…”).

6. Be Willing To Share

• Families of children with disabilities need long term care and access to resources. Familiarize yourself with programs and support systems so you can pass that on.
• Be willing to search and provide medical journal articles and supportive research papers that will help the family cope with their child’s specific issues.
• Help connect families with similar disorders – peer support is critical!

7. Always Remember That You Are Not Seeing A Child At Their “Best”

• There is a huge difference between seeing a child critically ill in the hospital, or sick in the doctor’s office, and seeing that same child in their home environment surrounded by comfort, familiarity, and love.
• There are many children who react differently around “strangers” than they do at home.

8. What Parents Want You To Know

• I love my child with fill-in-the-blank as much as I love my “normal” children.
• My child loves me back.
• My child communicates.
• My child experiences joy, love, happiness.
• My child with disabilities is special in many ways. They all have different needs.
• Ask yourself, “What would I do if (insert name) were MY child?”

MiraLAX Users - Caveat Emptor!

Users of MiraLAX and other generic polyethylene glycol products need to be aware of potential harmful side effects from using this constipation medication!  Generics for MiraLAX include brands such as Clearlax, GlycoLax, Healthylax, Purelax, Dulcolax, and many other products containing polyethylene glycol 3350 (PEG) as an active ingredient.

Many people, especially special needs children, suffer with chronic constipation, reflux, and slow motility issues. Most doctor-prescribed "remedies" are prescription or over-the-counter drugs designed to mask the symptoms and address the problem with a man-made chemical solution.  In our own household, we are guilty of using these remedies time and time again. In fact, for Rebekah, we use a daily regiment of reflux and constipation medications. One popular drug, Nexium, has received a lot of heat for bone depletion issues and I mention this topic in this blog post about the dangers of Nexium and other PPI-type medications.

I was recently made aware of the following link which explains why MiraLAX (and any laxative using Polyethylene Glycol 3350 (PEG for short) as their active ingredient) is not good for you.
http://www.gutsense.org/gutsense/the-role-of-miralax-laxative-in-autism-dementia-alzheimer.html
It is comforting to know that the main ingredient of these laxatives is a chain of ethylene glycol molecules - commonly used in brake fluid and antifreeze. There is evidence showing extremely concerning potential side effects. I try not to be an alarmist, I know there are many websites out there that tell similar stories about many products we use (like corn syrups, artificial sweetners, etc). But it becomes increasingly alarming to think that all of our advancements in chemistry have just led us to create unnatural products that are harming us more than helping.

According to this particular miralax claim, there is supportive evidence that shows that polyethylene glycol (PEG) is associated with neurotoxicity, nephrotoxicity, urticaria, and esophageal perforations. As an osmotic laxative, it blocks absorption of nutrients in the small intestine and leads to dysbiosis (lack of intestinal bacteria). The FDA's Adverse Event Reporting System (AERS) has included reports of serious kidney, rinary, bowel, blood, skin, and neuropsychiatric symptoms.  What I appreciate most (despite this not being a "medical" paper) is the appropriate links to actual medical journal papers that support the claims.

I did my own quick search and here are just a few of the things I found that support the article:

• WebMD says that common side effects of use are nausea, cramping, and gas (many of the symptoms we are trying to fix in the first place!), and that caution should be used if you have certain stomach & intestinal problems / obstructions (isn't constipation a form of obstruction and chronic constipation a stomach/intestinal issue?) or irritable bowel syndrome.
• The New York Times posted an article last year that states that there is no warning about use of MiraLAX with children despite lack of studies. Even more troublesome is that pediatricians are prescribing MiraLAX for long-term use despite the warning labels not to use it more than 7 days (my generic brand says 14 days).
• Even ehow.com states that long term use of MiraLAX can lead to diarrhea, dehydration, and mineral imbalance. (Given how many of our kids are on this as a long term regiment, how many of them are even having their blood checked for mineral imbalances?)

I don't know what to think anymore when you come across these websites that scare me into not using things. But it works! I have been thinking for a long time now how I can better help Rebekah and get her off of all of these unnatural medications for motility and bowel issues. We will be exploring blenderized diets and natural supplements, but I would be kidding myself if I said we are switching to all natural products and food. I can't put that kind of pressure on myself - I don't have the time or resources to do it all the "right" way. But I do know that educating myself helps me make better decisions and better choices for all of our family members, not just Rebekah.

So if you have something easy and affordable that works well, PLEASE share it with me! You may be able to help many other families besides mine.

Perfection

PERFECTION

by Michael Budd

(Written in honor of Rebekah Faith Budd- Full Trisomy 18 / Edwards Syndrome)

You play with toys, smile, laugh, and giggle;

You flap your arms, click your tongue, and wiggle.

You yell for joy, boredom, or disdain -

You want attention or to explain.

To a stranger it is unrecognizable noise;

To us it is cause to rejoice with the boys!

There is adoration in your eyes when you touch my face

And it shows me unconditional love and grace.

You roll, stand, and even, occasionally, we share a dance

Once this was only a dream and not even a chance.

You are designed as God wanted you to be -

Created in His image for all the world to see

That life is more about who you are

Than to what height you reach or what bar.

You are my amazing and precious little princess.

I cherish every moment we share and every success.

Some may treat you with rejection;

But we praise God for your perfection!

Everyone Poops

When you have four boys, rarely does a day (or a dinner) conversation pass without someone bringing up "poop". It inevitably is a part of our everyday conversation along with the other fun boy words like fart, belch, butt-head, smelly poopy-head, and the list goes on...

If it isn't the boys bringing it up, it's Rebekah's poopy diapers and poop explosions that seem to occupy my time. We just need to face it, POOP is a part of our everyday lives! If you don't believe me, then you obviously haven't read the book Everyone Poops by Taro Gomi.

Well, Tuesday was no different. Somehow, I expected it to be a grand day. Rebekah was getting her spica cast off! So on the way to the orthopedist's office, what happens? One last poop explosion up and out the back of the cast. That made for a lovely mess while they tried to cut the cast off.

To make things even better, I had orders to soak her in the tub until she was a prune to help her leg soreness. She wouldn't stay still in her bath chair and kept sliding down, so that wasn't working. I couldn't put her in a bath seat for babies because she had been casted at a 45 degree angle for 6 weeks and wanted nothing to do with sitting up fully. So I finally relented, put on a bathing suit, and sat in the tub with her. She was getting really irritable and started coughing. Well, with the coughing inevitably came... poop in the tub! I managed to hand her off to the nurse and started to drain/clean the tub so I could take a shower and clean myself off.

But there it was, at the bottom of the tub, as if mocking me... or perhaps just reminding me that I cannot escape my life doomed to poop at every turn. But living a sitcom kind-of-life, I didn't let a little poop bring me down. It can at least be washed off! So I did the only thing that I could do in a situation like this. I laughed and grabbed my phone and took a picture.  As the water continued to drain, another blob of poop formed a sad face, as if saddened, because it did not get the best of me!

"But there it was, at the bottom of the tub, as if mocking me...
or perhaps just reminding me that I cannot escape my life
doomed to poop at every turn."

"As the water continued to drain,
another blob of poop formed a sad face, as if saddened,
because it did not get the best of me!"

I promise that I did not "arrange" the poop in some sort of perverted manner. I just think God sometimes has a sense of humor.

Birdie, birdie in the sky,

Why'd you turdie in my eye?

I don't worry, I don't cry,

I'm just glad that cows don't fly!

And if you want to read more about poop, here is a link to Interesting Facts About Poop. My favorites from the list -

• The average human poops 1/2 pound per day, while an elephant poops an average of 80 pounds of poop per day!
• Poop can be classified into SEVEN groups. 

1. Separate hard lumps
2. Sausage-shaped but lumpy
3. Sausage-shaped with cracks
4. Sausage-shaped but smooth
5. Blobs with clear cut edges
6. Fluffy pieces, very mushy
7. Watery

Disclaimer: No poop was harmed in the creation of this blog post.

My Little Warrior Princess

The Warrior Princess Foundation - The Warrior Princess Foundation was founded by Michael and Chrissy Whitten after their precious daughter, Lilian Grace, earned her wings Thursday, August 5, 2010. She was born with T18, Edward’s Syndrome, on Sunday, April 25, 2010, and fought a daily battle for 103 days. Her parents realized the need and desire to help other families going through this similar journey due to the large costs and grueling daily battles this syndrome creates on a daily basis.  They wanted to create a way to help families, and so they began an annual fundraiser to help in that effort.

The foundation held it's second annual Trail Run fundraiser this past April 2012. They choose trisomy 18/13 children to recognize during the race. Rebekah was one of the these children honored both the first year of the run (2011), and the second year (2012).  We feel very blessed to receive an official Warrior Princess Medal which arrived for Christmas time.  Many thanks to the Whittens for honoring our trisomy children and for helping families in need! 

This is the medal that Rebekah received. The message reads,
"A small token/gift for your grace  & fighting spirit
through your true Trisomy Race. This medal is from the
2nd  Annual Warrior Princess Trail Run 10.3 miles, 10.3K &
Fun Run/Walk 1.03 miles races on April 25, 2012.
Love from Michael, Chrissy, Piper & Lilian (Angel)

Rebekah is totally thrilled at the honor of receiving an official Warrior Princess medal!

Navigate the slides to see more of Rebekah's funny faces. :-)