MARGARET OMOQUI

@maggieomoqui
hi my name is Maggie Omoqui. I am 16 year old . pader will syndrome, autism , ocd , sensory processing disorder
Jessica Patay

How to Deal With Hyperphagia in Prader-Willi Syndrome

The air he breathes. It’s his very own. It’s not like yours and mine. He thinks about it. All the time. Our air gives us life and breath and oxygen and helps us grow. His air could lead to death. In Prader-Willi syndrome, at some point in childhood, hyperphagia sets in. Hyperphagia is experienced as a chronic hunger, or never feeling full. It’s an obsession with food, which leads to excessive overeating, and a host of medical issues, if not carefully supervised. Children and adults with PWS die every year from choking to death, and from ruptured stomachs due to eating binges. It could look like this: A 5-year-old who sneaks into the pantry in the quiet of the night and opens all the cans. And eats. And eats. The kid at elementary school who takes a look into others’ lunchboxes and takes their food. The teenager who steals money from her parents to use the vending machine at school when no one is watching her for 20 seconds. Jessica’s son. It could be my 11-year-old who was eyeing Luke and Kate’s food as they packed their school lunch bag, or prepared some breakfast. I’ve had to become the Kitchen Bodyguard, a role I never fathomed would be mine. I want to describe a week in our life with Ryan, where his food drive went from zero to 60 overnight. We had this 7-day “episode” of intense hyperphagia, and then his food preoccupation returned to as it was. We have always kept a food schedule, watched his diet, and made adaptations along the way, as his food interest has increased. He has become more and more preoccupied with food, but it’s been manageable. It’s been a slow burn. Yet, what I will describe is not uncommon in the daily lives of most persons with PWS. One Sunday morning, all Ryan wanted was food. He was already a bit out of sorts (due to illness and the house remodel), so it was very difficult to use logic and the clock to explain when and what he would eat. I did my best to hold off and risked his aggression for not adhering to his demands and requests. I accelerated the schedule, but did not give in, no matter how much he told me he was hungry. Nothing could distract him. Not the TV, the iPad, reading, his workbooks, music, the backyard swing, nothing. In his state of mind and with his fragility, I couldn’t leave home with him. If he wasn’t sleeping or crying, Ryan was asking for food. Monday morning, he woke up in the same mindset. With coaxing and cajoling to do his before-breakfast-routine first, he did get to breakfast time. I gave him the usual choices and portions. Then he wanted to eat his snack and lunch. Right then. I had to talk him “off the ledge.” He got mad when Luke or Kate were eating their breakfast and he wanted more. He starting to become aggressive, so I had my husband watch him while I scooted out with Luke to get him to school. When I returned, he kept asking me to give him his lunch. I had already taken it out of his backpack, so he couldn’t get at it. I relented and gave it to him because his agitation was rising and I really did not know what to do. This was new territory. He ate his entire lunch box contents in less than five minutes. It’s a wonder he didn’t choke he inhaled it so fast. We are used to Ryan inhaling his food, but this was an all-new pace. It felt frightening to watch Prader-Willi have such a hold on my son. After he left for school with the help of school staff, I called my friend and mentor, Lisa Graziano, at the Prader-Willi California Foundation. I am sure she receives hundreds of these calls, yet she always makes you feel listened to, and doles out her expertise with such patience and a calm disposition. Lisa reminded me, “Food is like air to them. You cannot take it away.” She let me know “the natural consequences that he ate his lunchbox before school, and therefore doesn’t get anything else till his afternoon snack, will not work.” (Consequences aren’t often effective in children with PWS anyway.) She told me I must bring to school the same lunch, nothing special, but exactly as packed before. And I was to lower the calories rest of day. Kids with PWS have low metabolism, so their diet must be regulated carefully. So, you are hungry all the time, and you get less than everyone else, that sounds like a winning combo double whammy. Vent over. Lisa also reminded me to never give food outside of the schedule. Although it seemed like I was pacifying Ryan’s anxiety, it actually increased his anxiety. When you give extra food, you are showing them there is no schedule to rely upon, and to give them “food security” as we call it in PWS-land. Kitchen Bodyguard was my role the rest of that week. I put spiral combination locks from Rite-Aid on the fridge and pantry. Ryan was not happy about this, but I kept telling him it because I cared for him and wanted to protect him. All of it was for him. If I was prepping food, I had another adult there to stand watch. I thought about all the PWS moms, dads and caregivers out there who have been dealing with this level of intensity for their child’s desire for food. Think about how many times a day you open the pantry and fridge, especially if you have other children to care for. Not to mention play-dates, parties, family get-togethers. I joked we would all lose weight because we just didn’t want to bother with the locks so many times a day. I seriously wondered if this was going to stabilize, or if this was going to be the new normal with Ryan. By Monday night, Ryan’s cold and cough were completely resolved. And therefore, Ryan was returned to us. Just like that. It was over. I know it sounds difficult to believe, but it’s true. His food drive was just as it was before the crisis, manageable. I kept the locks positioned in the kitchen for the next few days, just to be sure. The intense obsession faded, and my job as Kitchen Bodyguard was shelved. And what must it feel like for Ryan and all persons living with PWS and struggling with insatiable hunger? How does it feel to them to worry constantly whether they will get their daily meals and snacks without interruptions or changes? We can easily imagine the anxiety and panic we’d feel if we were short of breath or suffocating. So, if we can imagine that food equals air to those with PWS for just a moment, we can see the struggle they must face with every breath. Follow this journey on Jessica Patay

Megan Hammer

Prader-Willi Syndrome, Halloween, and the Teal Pumpkin Project

It’s no secret that kids and candy go together like peanut butter and jelly. At no time is this more obvious than on October 31. Who doesn’t have blissful childhood memories of filling a pillowcase with rich, sugary treats? Who doesn’t remember the pleadings of parents to “just have one piece, and save the rest for later,” followed by the inevitable resigned sigh as empty wrappers settle into colorful piles all over the living room? Halloween and the accompanying feasting upon everything unhealthy is so ingrained in our culture that to imagine October 31 without it just seems… wrong. But what do you do for Halloween if your kid can’t have candy? The fact of the matter is, ever since trick-or-treating has been a tradition, there have been some kids who have been left out of the festivities. A few years ago, a clever proposal was put forth to allow non-candy eaters with food allergies to participate in trick-or-treating. The initiative, called the “teal pumpkin project” was started by food allergy advocates, who encourage families to place a teal-colored pumpkin on their porch in solidarity of those with food allergies. Children know to go to these houses because instead of candy, they will be given a small toy or other non-food trinket (glow stick, plastic ring, etc.). Sounds like a great idea, right? Unfortunately, and without fail, every year around this time I begin to read articles about the project, which include comments like, “Why should my kid have to suffer just because yours can’t eat peanuts?” or “Just pick the candy out that they can’t eat.” As hurtful and ignorant as those sentiments can feel, I think many people genuinely do not understand that there are many children who cannot eat candy for a variety of reasons, not just food allergies. My son Kyler, for example, is on a strict medical diet due to his rare genetic disorder, Prader-Willi syndrome (PWS). You see, as Kyler grows older he will likely develop an insatiable appetite, something called hyperphagia. Jessica Patay, a fellow PWS mom, highlights in her article, “Why Food is Like Air To My Son With Prader-Willi Syndrome,” how this is not your run of the mill hunger. Hyperphagia is caused by a malfunction in the hypothalamus of the brain. The effect is that a person with PWS feels like they will starve to death if they do not constantly eat. Coupled with an inability to vomit and extremely high pain tolerance, this means Kyler and others like him can eat until their stomachs physically explode. This heartbreaking possibility haunts the dreams of every PWS family. Halloween is a devastating holiday for many PWS parents. We think fondly of our own childhood memories, sorting and trading candy while recovering from sugar comas the next morning. Unfortunately, many kids with PWS cannot carry around a bag of candy without experiencing overwhelming anxiety and fear that they will lose control and eat the entire bag. It is just too tempting. Many of us also choose to put our children on strict ketogentic or low-carb, high-fat diets in an attempt to stave off some of the symptoms of PWS. For these people (such as Kyler), candy will never, ever be on the menu. When you really think about just how many holidays revolve around food in our country, you realize that holiday overindulgence is inescapable. Gluttonous quantities of turkey and stuffing at Thanksgiving, pies at Christmas. Hell, even chocolates on Valentine’s Day are something we’ve come to recognize as mandatory. Sadly, many PWS families eventually choose to avoid family gatherings and holidays altogether because it is just too stressful and heartbreaking. And I know we are not alone. There many kids with stories like Kyler’s. Whether they are on strict diets due to a medical condition like epilepsy, have food allergies, or another condition, the teal pumpkin project allows our kids to feel “normal” in a world where they are so often misunderstood. So before you interject with a quip about peanuts or gluten, please understand that teal pumpkins aren’t just about candy. They’re about allowing our children to share in a tradition that is ingrained in our culture, our families, and the spirit of who we are. To have this one seemingly meaningless tradition back, where my kid can fill his treat bag and not have to worry about his diagnosis… that means the world. Image via Facebook – Teal Pumpkin Project We want to hear your story. Become a Mighty contributor here .

Megan Hammer

It's OK to Talk About How My Son Is 'More Affected' by Prader-Willi

If you’re the parent of a child with special needs, I’m almost 100 percent certain you heard the same thing I did upon diagnosis. I’m willing to bet my right arm that a doctor, nurse or social worker urged you to “avoid comparisons between your child and ‘typical’ kids.” “He’ll reach his own milestones,” everyone said. “Don’t compare little Kyler to little Johnny because Kyler has a different set of challenges.” Sounds like solid enough advice. But what happens when little Kyler and little Johnny have the same disorder, and little Kyler is still developmentally way behind little Johnny? This is my experience. Kyler, my amazing little superhero, falls on the “more affected” end of the developmental spectrum for his age and disorder. Maybe your child does too. Maybe you’re also frustrated that we tend to almost exclusively hear, “beating the odds” type stories and few that reflect experiences like ours. Here are some of my personal challenges and survival strategies for this less-publicized (but not uncommon) situation. I knew what our Prader-Willi syndrome (PWS) diagnosis meant — or at least I thought I did. I was told Kyler would be delayed but with the advent of new medications, diets and supplement regimes, none of that would matter! Well, let me tell you: Kyler is on just about every remedy, shot and snake oil known to the PWS world, and he’s still not developing on par with his PWS peers. While some 2-year-olds with PWS are walking, talking, running and chomping chunks of steak with ease, Kyler is nonverbal, cannot ambulate on his own and is still eating small pieces of soft foods. PWS and Kyler’s “more affected” status affects my life in ways I never would have been able to predict. Take social media, for instance. Platforms like Facebook have allowed me to not only connect with fellow PWS parents but also help me to stay up-to-date with the latest and greatest treatments. Unfortunately, Facebook can also be a breeding ground for insecurity. Like many people from my generation, I occasionally spend time jealously flipping through friends’ pictures of milestones, parties and exotic vacations. However, I also find myself compulsively analyzing pictures of toddlers with PWS who are singing the alphabet and climbing up and down stairs. I can’t help but wonder, “What the heck am I doing wrong?” I try so hard to swallow my bitterness, and I’m genuinely happy for those kids who are doing awesome, but… man. I want my kid to beat the odds, too! We haven’t even encountered the later (and worse) stages of Prader-Willi syndrome, and I’m absolutely terrified those will hit Kyler just as hard. As new medications are developed, I hear things like, “Swallow your negativity, Megan! A cure is on the horizon!” The real truth, however, is that no pill, syrup or shot is going to replace Kyler’s missing piece of chromosome 15 (105 genes, to be exact). Besides, what happens if those medications don’t work for us just like everything else we’ve tried? I think what much of my experience as a “more affected” parent reflects is the desire for a modicum of control. Our lives have a tendency to become crazy at a moment’s notice, and having something, anything as a constant is required to keep us from completely snapping and running around naked in public. I can attend college, maintain a 4.0 and act as full-time mom, caregiver and advocate. What I cannot control is how Prader-Willi syndrome affects Kyler or how various treatments affect (or don’t affect) his PWS. That’s so difficult. I’ve been told by many in the special needs community, and even in my own family, that I have an overly negative or pessimistic outlook. It’s not that I don’t have hope for Kyler’s future — I’m excited by every milestone my little guy approaches with his characteristic methodical pace. However, I find that directly addressing Kyler’s current and potential limitations helps me make the best decisions for my family. Also, I’ve found that approaching PWS with a healthy dose of realism and skepticism has helped to minimize the stress and anxiety common to many special needs families. It’s taken me a long time to come to terms with this, but Kyler’s disorder is Kyler’s disorder, and no one else’s. He may never recite Shakespeare’s sonnets or walk with ease (or who knows, maybe he will!). Our lives will always have a certain level of stress resulting from his disorder, but Kyler is smart, strong and amazing. He’s not just a little boy with Prader-Willi syndrome. Kyler is a superhero. And after all, is it really fair to compare a superhero to a mere “typical” human?

Community Voices

Tiptoe Thursday #Autism

<p>Tiptoe Thursday <a class="tm-topic-link mighty-topic" title="Autism Spectrum Disorder" href="/topic/autism/" data-id="5b23ce6200553f33fe98da7f" data-name="Autism Spectrum Disorder" aria-label="hashtag Autism Spectrum Disorder">#Autism</a></p>
9 people are talking about this
Community Voices

Tiptoe Thursday #Autism

<p>Tiptoe Thursday <a class="tm-topic-link mighty-topic" title="Autism Spectrum Disorder" href="/topic/autism/" data-id="5b23ce6200553f33fe98da7f" data-name="Autism Spectrum Disorder" aria-label="hashtag Autism Spectrum Disorder">#Autism</a></p>
9 people are talking about this
Community Voices

Tiptoe Thursday #Autism

<p>Tiptoe Thursday <a class="tm-topic-link mighty-topic" title="Autism Spectrum Disorder" href="/topic/autism/" data-id="5b23ce6200553f33fe98da7f" data-name="Autism Spectrum Disorder" aria-label="hashtag Autism Spectrum Disorder">#Autism</a></p>
9 people are talking about this
Community Voices

What Hunger Feels Like With Prader-Willi Syndrome

When I hear people say “I’m absolutely starving,” “I feel like I could eat an entire ___” or the ever so popular “I’m hangry,” it makes me twitch a little inside. The reason? For those who have Prader-Willi syndrome (PWS), such as myself, we feel hunger in a painful and never-ending way. There’s been times where I’ve had to hold my tongue, when all I wanted to do was tell people with a frustrated tone in my voice, that they don’t know what hunger feels like. However, that’s just not appropriate or accurate. Obviously, everyone all around the world knows the feeling. There are many individuals who don’t have the proper resources for food. After all, it’s not my place to take away others’ feelings, nor would I ever want to. A small part of me would love for some to understand what it’s like to eat and be starving not even an hour later. Or to be fast asleep and be rudely awoken by piercing hunger pains. To have to face this hunger every day, and constantly choose to be stronger than the starving sensation. To know that the never-ending hunger could be the deadliest thing for an individual like me. And the real kicker here? This feeling starts when people with PWS are young and it just gets worse as they get older. You could say the feeling manifests over time. Then, we have to deal with knowing we aren’t actually hungry, it’s just that our brains are wonky, and giving us the wrong signals. The troubling part of all of this is there’s not much we can do about it just yet. There’s preliminary actions that can be made, but nothing will ever subside the hunger. Each and every day is a learning curve. I can without a doubt tell you that hunger is one of my must frustrating struggles these days. Thankfully, thanks to the help of my specialist, I participate in Weight Watchers. Food has always been and will always be an uncomfortable topic for me. However, each and every day I’m trying.I’m just learning and getting stronger as I go. Follow Alexandria’s story on Facebook

Community Voices

I have parder willi syndrome

<p>I have parder willi syndrome</p>
Community Voices

I have parder willi syndrome

<p>I have parder willi syndrome</p>