Research roundup #2
Hi everyone! Today, I have another research roundup, with some brand new amazing research!
A brand research paper was just published, and the topic is very interesting. This paper talks about the correlation between ARFID patients in PHP and the amount and types of sleep disturbances they experience. When I was in PHP, I definitely had my fair share of sleep issues, like staying asleep, falling asleep, and nightmares. I guess I wasn’t alone, because this new article shows that more than 75% of parents said that their children experience some kind of disturbance in their sleep.
Please check it out, I would highly recommend reading it. Have a great day!
Hi everyone! We have some exciting news for you! The Ask Arfid website is going to have some great new changes, with recurring types of blog posts, like Research Roundup, Mental Health Monthly, and much more! I am so excited to share more about my story, other people’s stories, and different ways to help people who have or know someone with ARFID. We hope you are excited!
Hi friends! I stumbled upon this great video ( https://www.youtube.com/watch?time_continue=441&v=hojezDpcC4E ), that was produced by Duke Health. While I am not advocating nor promoting them, I did think that this video was worth sharing. For someone with ARFID, this can be a great means to show friends and family about the struggle you or someone you love is undergoing. So often, when my son was ill, people would ask me what ARFID was. And even when I tried explaining ARFID to them, I still received many blank looks. When I said that the risks are similar to those with anorexia, suddenly everyone could relate, but educating people about ARFID was certainly challenging at times.
I think this video, while a bit drawn out, and does not cover all aspects of ARFID (i.e. fear of choking or vomiting), it does a great job of simplifying what ARFID is and how it may affect one's everyday life. I loved how it mentions that this boy does not like birthday parties, for example. My son hated attending birthday parties when he was younger and probably still does. Yet now he understands why and others do too. This helps to mitigate some of the social awkwardness amongst friends. When my son declines an invite made by his friends for a party of big event, they take it with a grain of salt and do not take it personally.
To conclude, I think this video would have helped me a great deal while my son was in treatment. Check it out and let me know what you think, below in the comments section!
Dear Parents of Ed,
Thank you for reaching out. This is an excellent question and is also an extremely difficult one, because either way you feel like you lose. If you admit your child into a hospital, your child will likely “hate” you, berate you, and make you feel like the worst parent in the world. Yet, if you don’t admit your child, you might very well be putting their life at risk, depending on how ill they are. In my opinion, if you are even questioning the topic of admittance, then you probably know what you need to do but you are hesitating to do it, which is completely understandable. Sometimes one parent believes treatment is needed but the other parent thinks you might be blowing things out of proportion and/or that hospital treatment is unnecessary. When parents feel divided on the topic, it complicates things even further.
What makes the decision even harder, is your child is likely to have tons of anger toward you. This is very typical when the brain is starved. It is the cognitive portion of the brain that is often affected when the brain is starved. This affects things like, memory impairment, attention, and executive functioning so it is unlikely that you can sit down and talk logically about the need for more intensive treatment, with your child.
For us, it was our son’s psychiatrist as well as his pediatrician that had, independently of one another, advised us to seek hospital treatment. At first we admitted him to a partial hospitalization program (PHP), where he was in intensive therapy for 12 hours of the day, 6 days a week. We felt like this was less of a drastic decision than to admit him into the inpatient program. We also were hopeful that the PHP would be able to resolve our son’s issues with eating and that he would begin to gain weight.
Within the first week of PHP, we were called in by the hospital and told that we should urgently admit our son into the Denver inpatient hospital (within the next 48 hours). Apparently his vitals were not looking good (ie his heart rate was showing signs of distress and his bloodwork showed signs of malnutrition). We had not anticipated this escalating further then it already had and we felt like our heads were spinning out of control. In hindsight it is amazing how quickly the downward spiral happened with our son and therefore felt utterly unprepared for what was to happen next. 12 hours a day, 6 days a week felt like overkill to us and maybe we were being to rash with our decision?
We had no choice and we were on a plane the very next morning. I remember questioning whether we made the right decision by bringing him to another state for medical treatment, or if we were making things worse for him by taking such “drastic” measures. After that we continued to question just about every decision we made. Once we admitted our son into the hospital, doctors said they needed to urgently install a feeding tube into his intestine so that they can get nutrients into his body and of course we questioned whether or not a feeding tube was necessary (even though it was). Then after seeing very little progress for the first several weeks, we once again we questioned if he would have gotten better on his own had we not admitted him in the first place. We questioned if we should remove the feeding tube because our son was becoming dependent on taking the food through the tube and was not eating any "real" food orally. Each time we relied on our son's team at the hospital to help guide us with the decision making even if we questioned it throughout the entire process.
Then when our son finally turned the corner, with his recovery, we questioned whether our son was ready to be transferred from inpatient to outpatient care. And finally we questioned if he was ready to face the “real world” once he was released from the hospital.
We walked blindly through this mess and put our trust into the doctors that were treating our son and followed our gut instincts. At the end of the day, the treatment our son received was top notch and the advice provided was amazing. Yes, there were a few times we didn’t follow the advice and there were many mistakes we made along the way, but our son’s team and my husband and I together, moved forward in recovery while we trepidatiously walked the path toward a better life for everyone in our family.
Even after we got home, there remained so many questions such as what do you do if a relapse occurs? Will we need to re-admit our child? Will our son ever get better? The list of questions is endless and the only thing I have learned to answer, with certainty, is that it is best to take one day at a time. Once you make a decision, trust it and trust yourself.
I decided to end today’s blog with an excerpt from my journal that I kept during the time our son was in the hospital. It was during the first 2 months when he was refusing to eat just about every piece of food that was laid before him. It was at a time when he was in Denver and we were in Austin. You will see how fearful I was on whether or not we had made the right decision on admitting our son.
The pain sears through my body
Not hearing his voice
Not seeing his face
Not holding his hand
Perhaps we jumped the gun?
Should we not have admitted?
Are we killing our son?
Did we do this to him?
No, I remind myself
he was so very ill.
His brain was starving
And his life, so dark
This was no easy path,
but the right one, I’m certain.
September 9, 2019
Hi and welcome to our blog. I thought I would make my first blog about some of the signs, or “red flags” that you or your child may need medical/therapeutic attention for ARFID, based on our own experience. An important sign for us, that our son was becoming critically ill, was when he was classified as “failing to thrive,” by both his gastroenterologist and pediatrician. In an attempt to understand why he was faltering in his growth, his endocrinologist ordered a growth hormone test if he was deficient in growth hormone. When the results came in low but “normal,” the doctors blamed his lack of growth on malnutrition.
Malnutrition can be revealed in a variety of ways, such as through a low weight gain, weight loss, or insufficient growth. A doctor that checks a child’s growth chart can see that the curve is not progressing along the same path as it had previously been moving on. Malnutrition can also be detected through bloodwork, often through signs of anemia or hormones levels, or deficiencies of nutrients within the body. A child’s heart rate can be affected too. These are things that a pediatrician can test for should they suspect that your child is not thriving and/or suffering from malnutrition.
More overtly, a clear sign that your child may be more than just a "picky eater" is a blatant refusal to eat food or certain categories and textures of food. You might notice that there there are many foods that you or your child used to enjoy but no longer will eat. You might observe that your child appears to be in “pain” when eating. He/she may be increasingly using supplement as a crutch to replace eating solid food. Maybe his/her doctor has gone so far as recommending you or your child have a feeding tube installed.
Often, as ARFID progresses, the above signs are revealed through non-medical ways, such as your child becoming more forgetful (as a result of a starved brain). For my son, this would happen often. He also would “lose time” when he was talking to us. In the middle of a conversation, he would suddenly stop and stare blankly at the wall, then once we gently nudged him a bit, he would “wake up” and ask us what just happened. This is probably in more severe cases of malnutrition, but it is something to take seriously and seek urgent medical care.
There are also more subtle signs that one can look out for, such as heightened isolation or an increase in depression/anxiety. The problem with the more subtle signs of ARFID is that it is easy to blame some of the above on your child being a “typical hormonal tween or adolescent” and therefore may get written off as a “normal” behavior.
My son exhibited all of the above and more. Additionally, we had tried less intensive therapeutic techniques such as occupational therapy and regular therapy in conjunction with a psychiatrist. In hindsight, it is difficult for me to believe that I did not see so many of these symptoms. As a parent, I think we instinctively want push problems away because if we don’t admit them, they do not feel as real. We want to see our kids as being healthy and happy and when we don’t, we feel helpless and blame ourselves.
My son was nothing but skin and bones when we urgently admitted him to the hospital. He was literally dwindling away right before our eyes and yet we couldn’t see it. Yes, we saw that he was skinny, but when you see somebody day in and day out, you don’t notice the changes that are happening right in front of you. It’s like when your kid is a year older, they still look exactly the same to you as the year before. It is not until you look at a picture from a year ago, that you are like, wow, look how much he has changed! When we were bringing my son to the hospital, we suddenly were able to step away from the situation and truly examine his emaciated body. It was then that we were horrified that we hadn’t noticed it sooner.
All the above signs are easy for me to point out now and I hope that I would more easily identify them, should my son or any of my children exhibit these signs in the future. But as I said, it is easy to have blinders on. Hopefully, this article can help you to be more attuned to some of the red flags of ARFID.
August 29, 2019
BOOK REVIEW: HELPING YOUR CHILD WITH EXTREME PICKY EATING: A STEP-BY-STEP GUIDE FOR OVERCOMING SELECTIVE EATING, FOOD AVERSION, AND FEEDING DISORDERS BY KATJA ROWELL MD AND JENNY MCGLOTHLIN MS CCC-SLP (2015) .
In my opinion, this is an excellent self-help book that speaks to all people that have a child or loved one that is a picky eater. It is skewed to a younger audience (ages 2-8) and while it says it speaks to ARFIDs, I believe it is more suitable for picky eaters whose health is not yet in danger of malnutrition or failure to thrive. In fact, I had tried some of the techniques in the book when my son was around 3 or 4 years old and they really worked!
I love how this book places an emphasis that your child’s eating disorder is not your fault because so many parents, like myself, carry so much guilt about “causing the disorder.” The fact is, it is counterproductive to blame yourself. Instead, focus your energy on seeking out the help that may be needed to help fight this disorder.
The book details sensory processing disorder (SPD) and how it can affect your child’s ability to eat. The author reviews tactics that may backfire and are ill-advised and can increase your child’s anxiety. In fact, the book places a significant emphasis on anxiety and how it can make problems with eating even worse. The importance of remaining calm at the table helps to keep anxiety levels down.
The importance of routines and structure, which ultimately help to reduce anxiety, is highlighted in this book. This, in my opinion, is so important. For children with an eating disorder, they may feel like their life is spiraling out of control due to high anxiety. The more that you, as a parent, can provide consistency around eating, the better off your child may be. Having flexibility in your routine, however, will be dependent on your child’s level of anxiety and on your own family’s routines.
The book also stresses the importance of having family meals together, as often as possible. I am also a big fan of having family meals as often as is feasible. Showing how dinner time can be a social activity where the family shares stories, laughs, and engage in interesting conversations can be very helpful in teaching your child the role that eating plays in the social world.
Additionally, the author reviews various symptoms that might be displayed when your child requires more intensive treatment. Lastly, the book summarizes various types of therapy, as well as short and long term goals to have in order to have a more successful connection with your child, as it pertains to eating.
i highly recommend trying some of these techniques, in conjunction with professional treatment, because you never know what will resonate with your child.
Hi I'm Adele and I am a service dog. I wanted to share some info with you about who I am. I was a rescue dog before I was lucky enough to be picked up by an amazing service dog organization. Since I was found on the streets, I don't know who my mom and dad were so I cannot tell you what breed I am, other than some sort of terrier mutt. I have learned to do many cool tricks but the best ones are those that help my owner to feel less anxious. I am trained to provide distraction, redirection, and can even apply deep pressure therapy. Sometimes I go to school with my owner on days he needs more support. Other days I just chill at home. I have been acting as a service dog for around a year now and I am really "digging" it!
Here are some other fun facts about me. I like to go to the off leash parks where I meet lots of new friends, run around, and play. I love pretty much everyone I meet, but I hate baths, pools, showers, rain, pretty much anything that involves water, bleh! I've traveled on airplanes, taxi's, kayaks, even gondolas! On my free time, I love to hike, chase frogs and squirrels, and eat the occasional beatle that crosses my path.
I almost forgot, my absolute favorite treat is a "pup-acinno" at Starbucks. If you haven't tried one yet, you are seriously missing out! Sometimes my human sister pretends she's getting a pup-acino for me and then gobbles it all up herself. So uncool!
Ps- I dont really consider myself a dog, by the way. I think I am more like a human, only much cuter and definitely smarter! Oh and bark if you liked my blog!