What Gives on #GivingTuesday?

This holiday season, The Coalition Against Pediatric Pain is thankful for all of the support that allows us to continue our mission to improve the quality of life for children living with complex pediatric pain.  Your donations have enabled us to host physician Think Tanks, send care packages, provide education and information to families and physicians, and helped found the first ever FREE pediatric pain summer camp! We have passionately worked to raise awareness, improve diagnostic time and help families navigate the challenges of finding effective treatment. 

This #GivingTuesday, we would like to thank you for your support and introduce you to some of the people whose lives have been touched by your generosity and ask you to help continue to spread the word.

TCAPP is proud to share the stories of so many of our friends on Tuesday November 29th in a unique inside look at “A Day In The Life…”

Stay tuned into our Facebook Page on Tuesday November 29th #GivingTuesday – We will be broadcasting live all day!

You’ll see first-hand of what it really means to live with complex pediatric pain.  We ask for your support by tuning in, commenting, sharing and donating! 

Here is our schedule of Facebook Lives we have planned:

9:15-10:00 Natalia Rijos
16 year old with RSD/CRPS, Gastricparesis, EDS

11:15 – 12:00 Abby McElroy
25-year-old 4th year veterinary student with EDS, POTS, Gastroparesis, Chiari Malformation and Tethered Cord (Has been released)

12:15 – 1:00 Rosemary Wiser
20 something nurse with RSD/CRPS, EDS, POTS/Dysautonomia and Lyme

1:15 – 2:00 Emma Parcells
14-year-old with RSD/CRPS, EDS, POTS, & MCAD

2:15 – 3:00 Emily Doyon
26-year-old with CRPS/RSD, Mitochondrial Disease, EDS, MCAD, POTS/Dysautonomia and HKPP

3:15 – 4:00 Lucky Eschauzier
11-year-old with EDS, POTS, MCAD, Gastroparesis and Tethered Cord

4:15 – 5:00 Sawyer Horcher
7-year-old with EDS, POTS, Ketotic Hypoglycemia and Hashimotos

5:15 – 6:00 Sammie Barrett
20 something with CRPS/RSD, EDS, POTS and MCA

TCAPP has big plans for 2017!

We are excited to be starting a research project dealing with Ehlers Danlos Syndrome, a major pediatric pain condition affecting up to 1 in 500 people in this country. We are also working on a documentary film that will give the rare community a voice, and talk about the progress in treatment and identify the continuing need to help bring EDS kids and other rare disease groups out of the margins of mainstream medicine.

We can’t continue our great work without the support of everyday individuals (many of whom suffer from pain themselves), corporations, groups, and physicians that have decided to support our cause.  We are incredibly thankful to all of you, and look forward to working even harder next year to help make life better for kids living with complex pain. 

What A Patient Advocate And Medical Ethicist Wants NBC To Know

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To The NBC Television Network,

As a patient advocate and medical ethicist that works with patients in the Mitochondrial Diseases community, I am writing to express my extreme concern and dismay regarding the “Chicago Med” episode that aired last night of February 2, 2016, on your network.

This episode covered a patient who presented with a diagnosis of “mitochondrial disease”, a category of rare and difficult to diagnose metabolic disorders, which was then determined by the lead physician on the show to actually be a case of “Munchhausen’s Syndrome by Proxy”, also known as “Medical Child Abuse (MCA)” which is an extremely rare, and controversial, form of child abuse. The producers of “Chicago Med” behaved very irresponsibly in the way they scripted this episode:

 First, they referred to mitochondrial disease as a “wastebasket diagnosis”, and implied that it is not a true and legitimate medical condition. In fact, mitochondrial diseases have been recognized as real medical conditions since the 1960s, and they are an important area of research involving hundreds of prominent research institutions around this country, including the National Institute of Health.

Second, mitochondrial diseases are a category of hundreds of very serious metabolic disorders, which according to the United Mitochondrial Disease Foundation[1], together result in more pediatric deaths in the US than all childhood cancer deaths, combined. In other words, these are devastating illnesses that claim the lives of children and adults every day. They are not trivial, and are not an appropriate target of medical “shaming” by actors on a television drama.

Third, the producers of “Chicago Med” conflated the diagnosis of a category of very serious, and sometimes fatal, metabolic diseases, with a diagnosis of a vanishingly rare and controversial form of child abuse, and very clearly implied to their viewers that children with mitochondrial diagnoses are appropriate targets for child abuse investigations.

This is extremely inappropriate and detrimental to the thousands of families caring for children with mitochondrial diseases in the U.S. As has been recognized over the last three years, medical professionals unfamiliar with mitochondrial problems have frequently targeted patients with mitochondrial diseases for investigations of medical child abuse. The tragic case of Justina Pelletier out of Boston Children’s Hospital in 2013-2014[2], provided national coverage of one such case. The New York Times editorial by Professor Maxine Eichner, in July 2015[3], documented that hundreds of similar false child abuse allegations against “mito” families have been reported to rare disease groups across the US. As a patient advocate, I also have personally witnessed this terrible phenomenon, and in the last five years have advocated for over 60 families of children with mitochondrial disorders who experienced false accusations of medical child abuse.

If “Chicago Med” wanted to explore the diagnoses of Medical Child Abuse or Munchausen’s Syndrome by Proxy, there was no need to link this type of child abuse to mitochondrial diseases. There was absolutely no need to include this patient population in a show on child abuse, and there was no excuse for further harming a community of rare disease patients that has already been devastated by medical, and public ignorance.

What Chicago Med producers accomplished on February 2nd’s episode was to irresponsibly contribute to the ignorance and suspicion wrongly surrounding mitochondrial disease patients, and to further the suffering and harm generated by the false child abuse accusations that many of these families have experienced. I am ethically and professionally disappointed by how this thoughtless behavior by “Chicago Med” inflicted harm on a group of vulnerable children and adults, and by how NBC contributed to this harm by airing the February 2nd episode. Please be accountable for the harm your network has caused, and issue an apology to the thousands of children and adults who suffer with mitochondrial diseases in the United States.

Sincerely,

Jessica Shriver, M.A.

Patient and Family Advocate, and Medical Ethicist

Jessica.e.shriver@gmail.com 

Worcester, MA

[1] “United Mitochondrial Disease Foundation: Mito 101” United Mitochondrial Disease Foundation. (http://www.umdf.org/atf/cf/%7B858ACD34-ECC3-472A-8794-39B92E103561%7D/Metabolic%20Precautions%20and%20ER%20Letter.pdf)

[2] Swidey, Neil. And Wen, Patricia. “Justina Pelletier heads home after judge ends state custody: Ruling caps 16-month battle over diagnoses and parental rights of Conn. Teen” Boston Globe June 17, 2014 (http://www.bostonglobe.com/metro/2014/06/17/judge-orders-custody-justina-pelletier-returned-parents/mDWtuGURNawSuObO0pDX4J/story.html)

[3] Eichner, Maxine. “The New Child Abuse Panic” Sunday Review: Opinion. July 11, 2015. New York Times. 

Why Child Abuse Allegations and Ehlers Danlos Syndrome Can Create 50 Shades Of Grey

While most of us that are familiar with EDS wish it was as entertaining as the book Fifty Shades of Grey, one thing we can all agree on is that it can be just as controversial with all of the real shades of grey we find ourselves wading through. With proper diagnosis often taking years, and even longer to find experienced physicians to help properly manage our care, many in the EDS community sadly share frustrations and even horror stories of things that happened to them because their condition was not recognized or completely understood. This past week, ABC’s 20/20 did a special report on EDS and featured the Ross family whose struggle is an extreme, but sadly not rare, example of one of the most serious shades of grey that EDS families can face – accusations of child abuse. Their youngest child has sustained several fractures triggering an investigation.  While the safety of the child must always be first and foremost, since EDS is involved, the following grey shades can make this case even more difficult for all involved parties to sort out:

  • There is not a genetic test for all types of EDS. 
     
  • There are additional subtypes of EDS that are thought to be discovered, but lack money for studies to complete confirmation. In fact, there have been several studies noting a possible EDS/OI (Osteogenesis Imperfecta) overlap.  (For the record, TCAPP has several EDS kids in our support group who have had several fractures and struggle with bone density issues.)
     
  • EDS is a connective tissue defect. Connective tissue is the building blocks of many body parts, not just joints. Therefore, a defect in the connective tissue can affect anything from the joints to the spinal column, to the gastrointestinal tract, to one’s vessels, and much more.  These defects can lead to certain nutritional deficiencies (due to absorption issues through our connective tissue in the gastrointestinal tract) that can lead to lower bone density, or predispose one to “brittle bones.” I often tell people to think of a house that was built on a faulty frame (the body being the house and the connective tissue the frame); there are so many parts of that house that can fall apart and cause a cascade and fixing it piece by piece is just that, the infrastructure is still faulty so there is always the potential for collapse.
     
  • While contortionists may be able to exhibit what EDS can do to the bodies and joints, people tend to focus on the artistry of contortionism. They do not realize that with repeated dislocations, etc., there is internal damage being done and many will suffer from chronic arthritic or nerve pain at a very early age for the rest of their life.

Even when one can manage to sort through the shades of grey above, there are still the other shades of grey those with EDS live with:

  • The shades of grey in treatment of EDS: Many hospitals, physicians, and even families judge successful treatment by a cure. There is no cure for EDS and until the standards of success are changed to judge the quality of life of an individual and EDS is looked at as an illness that needs to be under the realm of palliative care, we run the risk that many will continue to be denied treatment (for fear of failure), or constantly be disappointed in outcomes.
     
  • The shades of grey in living with EDS: How does one learn how to live their life to the fullest or allow their child to live their life to the fullest when the slightest motion, movement, such as opening or closing a car door can result in a catastrophic event that medically disables that person or child for months or years at a time?
     
  • The shades of grey in advocating for a child with EDS: How do parents manage to support their family and care for their child afflicted with EDS when the medical community itself doesn’t fully understand the disease or its ramifications? There is no treatment plan or guidelines to follow and yet so many of us seem to follow similar challenges. How do families juggle the added finances of multiple out-of-pocket expenses, such as medical travel just to keep the quality of the life of their child optimal, and, how do they juggle the other everyday issues of raising a child in today’s world?

The “shades of grey” for EDS go on and on. So, in cases like the Ross family that ABC’s 20/20 featured, before one is quick to judge, jump to conclusions, or, consider one guilty BEFORE being proven innocent, perhaps some extra time, due diligence, and digging should be done before a family already condemned to live with a lifetime of shades of grey, has to go through more heartbreak.

You Can’t Touch This! Easing Social Anxiety For Kids Living With CRPS

When a child has Complex Regional Pain Syndrome, keeping them active and socially plugged in is an important strategy for emotional wellness. However, it can also be one of the more difficult, if not sometimes impossible things to do.

Who wants to go out or make conversation when you feel like your limb is on fire?   

We are eleven months into the CRPS nightmare with my eleven-year-old son. Thanks to Xbox, Minecraft and Face time, he has managed to keep up some of his friendships from the comfort of our couch.  But after a surgery and recent pain flare, he has been home a lot more than usual lately and has been unable to return to school.  While we have had enough family time to keep us from missing each other for the next ten years, it has been a bit isolating for all of us.  So when we were recently invited to a New England Patriots playoff party in our neighborhood – I saw an opportunity and JUMPED on it!  

My son would normally have been excited to go, but when I told him about our plans, I noticed he was less than enthusiastic. As we got closer to party-time, his mood seemed to sour and he started closing down.  “Don’t you want to go and see all of your friends?” I asked. And as his eyes welled up, I realized it wasn’t that he didn’t want to go, it was that he was afraid to go.   

In our insular world, we are all very well versed in how to handle “the leg.” We are careful not to bump or touch him as the Allodynia is excruciating and will set off an overwhelming few moments of pain.  We know even the slightest vibrations, a ride in the car or something as simple as loud music; can sometimes cause problems for him. The family dogs also need to be kept away when he is up and walking on his crutches.   

Now I don’t want you to think we are the Hovercraft family.  My husband and I work hard to enforce a positive attitude towards pain, and we try to keep it in the background of our everyday life encouraging our son to be active and keep up with normal activities as much as he can in spite of how he is feeling. 

However, I could see that this social anxiety was starting to get ahead of us. I realized that if I was ever going to get my buffalo wings and party-dip on, we needed to come up with a plan: 

  • Communicate Your Needs: I called and talked to our hostess about my son’s anxiety. I wanted to make sure she understood that I would take full responsibility for everything, but just wanted her to know in advance that we would be looking for safe and contained places for my son to sit throughout the evening.  
  • Enlist Help:  Most of my son’s friends have a pretty good understanding of his pain, but let’s face it, there is always some kid who is a bit unpredictable or has boundary issues that might get a little too close.  I talked with his best buds about how they could help by being aware and respectful of my son’s leg and making sure other younger kids don’t get too close during the party.  Those pint-sized bodyguards were more than happy to help out, and I think it helped my son to feel better knowing he had allies to help ward off any unwanted physical contact. 
  • Shared Duty: Since my hubby and I were also in need of a mental break, we decided to take turns being “on duty.”  Just knowing for a full hour and a half that I was “off the caregiver clock” gave me a chance to really relax and engage with friends without being preoccupied.  It felt really great! 
  • Code Word: I wanted my son to know that he always had an out. If his pain became unmanageable or he wasn’t able to enjoy himself, I wanted him to know that he would be able to exit – no questions asked. So we came up with a safety word. Gronkowski! If my son decided to throw it, we agreed in advance we would not stall or ask for more time, or talk to him about his pain, (because he said that would embarrass him) we would just head home. 

I think creating awareness, assigning his allies and giving him some control over his situation, really helped my son to feel like he had more control. As expected, once we arrived and he spent some time with his friends, he eased up and really enjoyed himself. We all did.  It will be interesting to see if lightening will strike twice as we head into the Super bowl this weekend. I made my party dip - here’s hoping!!! 

Does your child exhibit increased anxiety about going to school or out in public when their pain is higher?  Do you have any experiences or recommendations that you can share with other families that might help to ease the situation? 

 

 

 

Merry Chronic Christmas! Finding The Spirit For Kids Living With Pain

That most wonderful time of the year is upon us. The frantic frenzy of holiday shoppers, and manic mamas digging deep, forgoing sleep with baking, and picture taking, and decorating and finding new and outrageous things to do with that Elf on A Shelf.  What I wouldn’t give to be part of that madness.

Yet as I watch this merriment unfolding all around me, I fight hard not give in to the melancholy. My child’s pain and suffering does not temper to any calendar. The limitations, unpredictability and home-bound isolation is still a daily challenge.  We are working hard to seize the spirit of the season, and as always, keep that positive face for our kids. But the fact is, the 12 Days of Christmas DO look a little bit different if you have a child who is not well. So I will share a snapshot of pre-holiday to do list, as my family’s seasonal situation is the reality of so many other TCAPP families this time of year.

The Christmas Tree:  Where to put it this year is a no-brainer. My 11 year old son has been sleeping and living on the recliner in our family room for weeks.  His CRPS makes even the simplest movements a challenge. The chair is the only place he can get sleep. No-brainer - THAT is where the tree will go!

Decking The Halls: When is the question.  One again, we are again on the verge of another hospitalization. We are also on the waiting list for a rehab program. Should we deck the halls before he leaves for the hospital? Or wait until his pain levels are down so that he can enjoy and take part in the decorating? Would the tree comfort his sisters while mom is away? Or serve as a sad reminder?

Holiday Cards: Smile kids. We may be a bit battered, but we are not broken. I have no idea what picture I am going to pull out for this, but I will resist the urge to send out something sarcastic. Lol!

Twinkling Lights: Although admittedly not his favorite activity, my husband does take pride once the outside Christmas lights are up. There IS something magical about coming home to tiny bright lights twinkling in the darkness and illuminating the snow. It makes the house look cozy and inviting.  This year my husband had to dig deeper because truth be told, with all the worry over the kids, who feels like decorating or doing anything merry?

Holiday Parties: It’s hard to go out and be social, when you know your child is struggling. The experts say it is important for mom and dad to keep normalcy, so we give it a try.  But like strangers in a foreign land, it is a bit hard to truly relate to many of the conversations and merriment as our life feels quite different right now.  But if I am being completely truthful, the spiked eggnog did help.

Religious Services: The sole purpose of the season and yet half of us is unable to attend. God is well aware of our situation. 

Family Get-Togethers:  We are blessed to have a family that is supportive, so for us these gatherings are a welcome respite.  But for many, these invitations can be real reason for pause if there are well meaning family members who don’t understand your child’s condition. Or worse yet, who do not treat you or your child in a kind and supportive way.  

Holiday Shopping: 1 word…. Online!  

Ok, so perhaps we are having a bit of an “adaptive” Christmas this year, but the fact that we are all together is what truly matters. An idea that I keep hammering into my kids, as I am acutely aware that many families struggle with loss this time of year.  We are still so very blessed. 

We may have to dig a little deeper for that seasonal spirit, but we are determined to seize the holiday magic in any way we can.  Cookie baking and card making certainly helps to set the mood. Elf, The Grinch and other TV specials and inviting friends over is a great way to get our cheer on.  Sending packages to the troops or others in need spreads goodwill and helps the kids to feel good. And what the heck, let’s build a gingerbread house smothered in candy…. or launch a few snowballs at each other in the house. Bend the rules, the laughter is worth it!

If it turns out we are inpatient for the holiday, I have a special bag packed with all kinds of holiday treats to help pass the time in a festive way. (I hope the nurses are cool with the new door basketball net!)

I have met so many amazing and resilient families this year, who push forward with hope and optimism in spite of medical obstacles. I would love to hear what you are doing to bring the spirit of the season to your kids.  Please share your ideas and tell us how your family is coping with the added demands of the holiday season.

Wishing Everyone A Happy And Healthy Holiday!!


 


PTSD and Chronic pain

Dealing with chronic illness and navigating the medical system can be extremely stressful on families. When a child has a condition that is not easily recognized, treatment options are not clear-cut, or required modifications are not well understood, it only adds to the pressure.  Sadly, many TCAPP kids have experienced and been diagnosed with post-traumatic stress disorder. TCAPP mom, Kelly Lucid, shares her son’s story after he experienced conscious awareness during a surgical procedure.  

Our 14 yr. old son Timothy fell skim boarding last August and fractured the growth plate in his elbow. He had a 1-½ hr. outpatient surgery that would change his life and ours.
 
Post op and 2 hospitalizations later, he was diagnosed with CRPS and Complex PTSD (Posttraumatic stress disorder) from anesthesia awareness.  Timothy not only had the physical pain of CRPS but also the mental pain of feeling his entire operation and not being able to move to alert the doctors.
 
A literal, living, nightmare.
 
Thru this entire year we have been fortunate to have a chronic pain management physician who has been our guardian angel and Timothy’s pediatrician, psychologist, psychiatrist and physical therapist that have become his Dream Team. We have learned Complex PTSD is a deeper engrained level of posttraumatic stress that is extremely difficult to control. It is a demon living under the surface and it rears its ugly head when something so simple as a smell, touch or sound sets it off.
 
Think about all the experiences you have had in your life. The smell of your grandmother’s house, your first car, and the first flowers your husband bought you, your newborn baby’s skin. So powerful that it takes you right back like a time machine. Now imagine a time you were sad or scared...A car accident and the smell of burned rubber, the inside of a funeral home or a hospital. Now imagine a time when you were terrified…..The stench of an attacker’s breathe, the smell of the ocean and diesel fuel after your boat had capsized, the scent of sweat and dirt as you hide in a tornado shelter or Timothy’s experience, the vibration, smell and unspeakable pain of a drill thru bone, the sanitized smell of an operating room, the feel of sheets on your cold legs, the ability to hear in the doctors’ and nurses’ voices that they were unfamiliar with each other and being completely powerless as you try to alert them you are in horrifying pain. This may seem unthinkable and hopefully most of you will never have to have any of these experiences but some of you may, and you will have to learn how to heal on a daily basis like Timothy does. As a parent you will have to watch your child struggle in physical and mental pain not always knowing what will help or hurt them.
 
I have learned how fine-tuned the brain is and how it remembers everything - especially if it is a threat to your safety and survival. Chronic pain is a constant reminder to the brain that it’s in danger, reinforcing the PTSD. I wish I could tell you there was a manual for PTSD and Chronic pain. There isn’t. We had to really pay attention to the little things that were triggers. We changed everything. Bath soap, dish soap, laundry detergent, perfumes, hair products, colognes, clothes, and we even moved. Anything to create new experiences and pathways that were positive for the brain.  
 
We had to figure out how to convince Timothy’s brain that the danger wasn’t life threatening anymore. At his worst, he was blacking out so his brain could hit a reset button to release the physical pain and mental pain it was feeling. He has had nightmares all night every night for the past year. His psychiatrist has tried EMDR-which is a rapid eye movement technique to help the brain forget the trauma, unfortunately with the physical pain of CRPS his brain could not forget. Timothy started going for 2 hr. hypnosis sessions about 6 months ago weekly and this has been the most effective way to control his pain and heightened hyper vigilance. He is not on any pain medications. He controls all his pain and PTSD thru hypnosis imagery and music.
 
Everyday is a new challenge and some days we can’t control his tremors or nightmares. Sometimes we have to know its ok for the body to release its pain, however it needs to heal. PTSD will never go away on its own, your brain needs help dealing with trauma. I have spoken to Veterans from our armed forces that still struggle many many years later with PTSD from their service to our country. Most of them never got the proper therapy and support needed to heal themselves. That is a tragedy.
 
As a parent, all you can do is reassure your child that you will never give up or stop trying to help them find a way to live as pain free as possible. That your love is strong enough to carry them thru and that the same power their brain uses to protect itself from trauma can also be used to heal itself.

Why The Red Band Society Does Not Completely Miss The Mark

Your body isn't you. Your soul is you and they can never cut into your soul.
Leo, The Red Band Society

FOX recently launched it’s new teen medical drama The Red Band Society. My daughter and I watched with great anticipation, because like many TCAPP families, we have spent much of her adolescence in hospitals and have met a wide range of teens, medical professionals and “characters” along the way. 

My daughter watched the pilot while online with a boy she had befriended during one of her hospitalizations.  He had been brought over from Africa five years ago for medical treatment. They were both young teens, immobile and in a very dark place at the time.  A friendship blossomed over grueling physical therapy sessions, dodging the hospital psychiatrist, crafting and hanging out with Kim, the supercool Child Life specialist and taking late night wheelchair rides around the floor looking for whatever mischief they could muster.  They tortured each other like siblings at times, debating Celtics vs. Lakers and posted Justin Bieber posters on each other’s doors, but they also supported each other during that challenging time in a way that friends and family couldn’t. 

Both of them were initially a bit disappointed with the show and the Hollywood version of what hospital life is like.  From the large and fancy hospital rooms, to the fashion and freedoms that Kara, Leo and the other the patient’s exhibit, the unrealistic storyline lost them about twenty minutes in.  But while the The Red Band Society IS lacking a bit in the reality department, it does not completely miss the mark.

Being sick, especially during what is supposed to be the prime of your life, just plain sucks.  There is no way to sugar coat it.  The never-ending doctors, therapies, meds, tests, surgeries, crisis, and hospitalizations, suffering and uncertainty is a huge buzz kill to any kind of normal teenage-dom.  In spite of all of this medicalization, at the end of the day, all our teens want to do is act like teens with all of the friendships, social drama, bad decisions and rebellion that goes along with it. 

So while I have very mixed emotions with this new entertainment trend that glamourizes teen illness and suffering, I will continue to watch The Red Band Society and keep an open mind looking for glimpses of dialogue or storylines that may help others understand the double lives that many of our kids lead.  If this show helps one friend to be more supportive or better understand the added challenges that our kids must navigate, than Hollywood’s effort will be worth it. 

How do you help your child strike a balance between their medical life and normal life?  Do you have any ideas that may help other families?

 

 

 

Paving The Way! Back To School For Kids In Pain

When a child is living with pain and chronic health issues, back to school can be a time of mixed emotions and added logistics for parents to navigate. 

I woke up this morning, ignored the pit in my stomach and made THAT call.  

You know, the call to the Special Education Director to give an update on my child’s health status and to let them know that “yes, we are most likely going to be a huge pain in the ass again this year with our chronic unpredictability.”  I use my most friendly tone as I share my thoughts about potential accommodations and ideas I have to help make this year go smoother - as if ME being likable might magically make her feel more invested in wanting to help my child.  We both know that my daughter has a right to an education and is protected under the law, but exactly what that education consists of in terms of the curriculum and how it is delivered is often open for interpretation.  

Public schools are not well equipped to support children with chronic illness. We have a 504 plan, but let’s face it, so do so many other kids these days. Over the years I have found that often times the 504 isn’t always immediately shared or maybe completely understood. So my back to school routine includes touching base before school starts with the school nurse, guidance counselor and teachers to proactively explain my child’s situation. At this level, details and educating on the specifics of her condition and how it affects her both physically and emotionally seem important because these are the people who she will interact with day to day. 

When we were first diagnosed, I wanted to protect my daughter’s privacy. I quickly realized it was a mistake the day she went to the nurse complaining of high pain and dizziness and was told (in not so many words) to suck it up sally and get back to class. I now go in fully armed with information. This is my daughter’s condition and this is how it may impact her attendance and her ability on any given day. I don’t usually get into the role of medications or how hard it may be for her to concentrate on high pain days (let alone concentrate or test on certain pain meds!) because if she is going to attend public school, she is going to have to swim with the fish regardless. That is life. We are not asking for any special treatment, just flexibility. 

As my daughter has gotten older, I have had a few teachers tell me that they would prefer that she explain her condition and advocate for herself. I agree self-advocacy is an important skill for our kids to develop (and I am well aware that I am setting myself up perfectly to look like “that helicopter parent”) but I also know that her embarrassment and her desire to fit in with her peers often overrides her understanding of why detailed communication is important.  

Bottom line, I would rather risk taking the hit and having everyone on her educational team informed about how to best support her and help her succeed.  Our kids have so many challenges that they must deal with behind the scenes, is it wrong to want to pave the way and try to minimize the stress of school? 

Do you agree in paving the way? What extra steps do you have to take to help prepare your child for back to school? 

That Space Between Us

You will always be my baby, my child, my soul - you are part of me. 

Your challenge is my challenge, your illness is my illness, and your pain is my pain. 

I would give anything to trade places and take what you must endure each day. 

I would do anything to make all the struggle, fear, frustration, sadness,isolation, disappointment and obstacles go away. 

I can lay with you, hold you, distract you, cry with you, encourage you, entertain you, support you and cheer for you but only YOU know what it feels like to live each day this way.

 

It is such a sweet and empowering feeling of motherhood to be able to scoop up your crying child and soothe them with a warm embrace or gentle kiss on the head.  Your very presence is comforting. Mommy magic can heal just about anything - from nasty boos boos to that mean boy on the playground, and even the monsters under the bed.  Part parent - part superhero, there is no better feeling in the world than the ability to soothe your child’s pain.

 

 But what happens when you can’t?

 

For so many families living with chronic pain conditions, this is the harsh reality.  Chronic or debilitating pain creates so many challenges, but the huge emotional divide that it can create between you and your child is one of the more difficult daily obstacles to overcome.  

Pain is isolating.  So how can a parent bridge this emotional distance?   I admit, my first response was to become a SMOTHER. 

I resolved to spend every waking moment, distracting and entertaining my child so that she would not think about her pain.  As a mom, I may not be able to cure it, but I must be able to at least make it better, right? 

Every day, I would make plans, choose crafts, schedule homework, plan movie time and just try to be entertaining because I wanted to make sure that my daughter always had something to do. I now realize that I was afraid to leave her alone, or let her get bored because then she might think about her situation, or even worse, she might feel it 

There were times when she was sad, but I was always there to hold her and we cried together – even when she didn’t want me to.  After all, we were in this pain battle together.  I was determined to dig as deep as she needed me to, to be there in “mama bear mode” 24/7 to make things better for her - somehow. 

But all this togetherness began to strain our relationship and actually even pull us apart.  I thought I was helping, but in fact I was driving us both crazy.  At times, I would snap at her and she would scream at me. I was also unknowingly becoming resentful as my household work was backing up, and the pressure of other children and life responsibilities was creating more stress. My intentions were good, but I soon realized that my forced positive attitude and continuous support and encouragement was actually irritating to her. I began to realize that what my daughter needed most was a break  - from me. 

No matter how hard I tried, the pain was hers not mine.  SHE needed to own it, she needed to feel it and she needed to grieve it.  I thought I could shield her from all these feelings. In hindsight, by trying so hard to protect her emotionally, I was in many ways, making it worse. Moms are annoying, the teenage years are tumultuous, and sarcasm and eye rolling are all part of the package, I accept that.  But chronic illness adds an entirely new dimension to the parent-child relationship. 

My need to “mother her” through this, was overshadowing her true needs – time and space to process things on her own. There is a time and value in being able to wallow in your own sadness, and let it all out. And yet there is also a time that you need a mother’s hug to reassure you that everything is going to somehow be okay. I learned that I needed to allow my child to set the emotional pace each day.  I realized that I needed to recognize her cues when she is pushing me away, and to not take it so personally. As much as I do not want it to be this way – my child has to learn how to live life with pain and that means being able to manage all of the physical and emotional challenges that go with it.  This is a bitter reality that is still hard to digest. No matter how much I may want and need to charge across that bridge of the emotional gap between us, some days I just shouldn’t. 

There IS a space between us, and it needs to be respected.  Like the toddler that must be allowed to fall so that he/she can learn to walk on their own, I now realize how faulty my initial thinking was. Children living with pain need the space to find their own way to emotionally cope with it.  We can provide some tools and resources, but we cannot do it for them, no matter how desperately we want to.  

Ironically, by stepping back a little, I may have helped strengthen our bond. If there is a silver lining to be found in all of this, it is the fact that all of the one-on-one time, and highs and lows that we have been navigating together has made us closer. We are very tuned into each other - at times it is intense. It may not always be pretty, but it is real.

 

How has your child’s health struggles impacted your relationship?  Do you have any thoughts or ideas to offer other parents on how to cope?

 

 

Surviving the rabbit hole

If you are reading this blog, chances are your child, or someone you love lives with a chronic pain condition.

Your daily life is most likely altered, and possibly has become limited. If you are fortunate, you will have found care with the many knowledgeable and supportive medical professions who understand connective tissue disorders and chronic pain syndromes. Or, like many TCAPP families, you may have stories of, misunderstood symptoms, discounted pain, multiple physicians, mounting family stress, helplessness and unfortunately a lot of disappointment. It is difficult to navigate this experience, let alone, parent a child that is hurting through it. You are a caregiver, a punching bag, cheerleader, counselor, emotional supporter and at the end of the day, a worried parent. You may have fallen into what I call the rabbit hole of pediatric pain. It can be a very dark, isolating and overwhelming place where things may not always be, as they seem.

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Body and mind are connected. Psychiatric evaluations and counseling are a necessary and important part of pain management, but sometimes they can unfortunately also work against the patient, family and even physicians. My daughter was hospitalized for 7 weeks for pain management following a spinal surgery. A few members of the nursing staff that had been so helpful and supportive during our post-op recovery, started to show less empathy and attentiveness as the weeks wore on. Ironically, this is when my child and I, needed their support the most. I shared this concern with my orthopedic who kindly responded, “sometimes when you can’t find the source of pain, it is easy to blame the patient.” Fortunately for us, he did not. But his words helped me to better recognize this unfair reality.

It is very unsettling when you realize that medicine is subjective and answers are not always black and white. Complex medical conditions, connective tissue disorders, RSD and other rare syndromes are not always recognized or understood. (Especially in teaching hospitals where you may be dealing with residents and less experienced physicians.) It can make you feel like an outsider, when a professional that you respect and may be counting on, fails to come up with a solution or new idea.

The stress brought on by chronic pain, worry, caregiving and managing medical information can wear you out. And then layer in the psychological assessments and well meaning counselors that can sometimes lead you to question not only your child, but also yourself.

Unfortunately, many children in this TCAPP community have had traumatic experiences because their symptoms weren’t recognized or understood. Their parents have been accused of “overmedicalizing” their children or perhaps even contributing to their pain. Most of us have stories of feeling like we are being treated as the “crazy parent” because we are fighting for help. This is one of the many important reasons why TCAPP was founded – to help educate families and physicians, and find ways to better work together to help children in need.

The recent Justine Pelletier case in Boston is a sad example of the fine line that some parents of chronically ill kids must walk. It is unfortunate and tragic, but real. But equally real, is the growing number of physicians and compassionate care doctors and psychologists who are going the extra mile, and are standing up for their patients as if they were their own children.

If you are currently struggling, please know that it is possible to survive the rabbit hole of pediatric pain and climb back to the surface. If you are here on our website, you have already taken the first step.

Would you like to Guest Blog?

Welcome to our new blog, Parents Talk! Since there is no manual for how to parent a child in chronic pain, or how to navigate the sometimes seemingly endless abyss of physical and emotional challenges, we have created this space to explore and discuss the unique parenting and family issues that so many of us face. We are not experts, just parents like you, who hope that by sharing experiences and discussing strategies we might spark ideas and provide insights on new ways to help our kids.

We invite you to submit ideas for topics or parenting challenges that you would like to explore. We also welcome guest bloggers, so if you have an area of expertise, or topic that you would like to write about, please feel free to contact us at PARENTSTALK@TCAPP.ORG.

 

Connecting

Our 10-year-old daughter who was once a beautiful and passionate dancer now sat in a wheelchair as walking was far too painful.She had lost sensation below her knee, where the excruciating pain was coming from.Her foot had become discolored, swollen and extremely cold.

While trying to get a diagnosis and treatment we took her to 2 different Emergency rooms, one urgent care clinic, 2 pediatricians, 2 neurologists, 3 orthopedic surgeons, 2 physical therapists, a holistic MD, an acupuncturist and 2 Rheumatologists.When we finally got the diagnosis of Complex Regional Pain Syndrome, we were told that our daughter would be able to regain function of her leg but that she would need to learn to live with the pain.My 10 year old would go into a Pediatric Pain Rehab Program in another state in order to learn to walk and live with her pain.

I felt as if our family had experienced a personal earthquake.Our life had drastically changed and yet our family and friends could not grasp the magnitude of the earthquake we had experienced.It’s not that our friends and family didn’t care, there just wasn’t anyway they could truly understand the helplessness, frustration and daily challenges we were going through.

We no longer had the luxury of deciding which after school programs to sign up for, whether she was ready for sleep away camp or would get a lead role in the theatrical production.We were now filling our days and nights researching rare medical conditions, exploring complimentary pain treatments, and trying to find doctors who possibly had answers and could offer us hope.

It was only when I found other mothers, who had survived the initial earthquake of parenting a child in pain, did I feel understood, embraced and truly supported.I consider these women as family, as together we celebrate our children’s successes and cry when any child has a pain flare up.We encourage each other to keep fighting.And just as we support each other, our children have come to support each other.While each of us face don’t know what the future will bring for our child, we know we won’t be alone in whatever the future may hold.

We realize there is power in numbers and that if we want to bring attention and funding to these misunderstood and under researched diseases, The Coalition Against Pediatric Pain (TCAPP) needed to be created.For the love of our children and those we have met on this journey, we have decided to take matters into our own hands and have embarked on a path to affect change: to support and unite families affected by pediatric pain, to increase awareness through education and to raise the much needed funds to find treatments and cures within our children’s lifetime.We hope you will join us on our journey.

Barbara Granoff, founding member
Newport Beach, CA