Defeat?

Today is beautiful. I am outside, enjoying the weather and yet, I’m fighting feelings of defeat. This morning we had our third visit with the psychologist who has recently begun working with C. We have been waiting several months to see this doctor, as is common with most of the pediatric specialists our kiddos need to see.

I know there are no quick fixes for what he is dealing with, and that this is a marathon and not a sprint, but I guess I let myself get my hopes up. I was under the impression that this new doctor would, not only be the one who would be able to help C with his behavioral issues that are connected to his gut issues, but also help with the other behavioral issues he deals that are connected to his ODD and anxiety. Unfortunately, this doctor only works with the mind/gut connection.

We had our first meeting with her last week. After filling her in on all that we were hoping to accomplish, she basically told us that she felt that we’d be better off seeing a different psychologist to focus on the ODD, anxiety and other issues before treating the gut issues. Though I’m terribly disappointed, I understand her point. If he is defiant and oppositional towards the suggested treatments, then we will be at a standstill. He must be cooperative for the therapies to work. However, she’s still willing to see us for a time and see how it goes.

For the second appointment, C met her for the first time but spent most of the one-hour session with his face buried in my lap or in a pillow on the couch, and then went out and sat in the hallway with my phone while I finished the appointment. Not really a rousing success. We did, however, come up with an initial plan.

First, C needs to wear underwear during the day and, second, practice sitting ‘properly’ three times a day. The underwear is a tough one simply due to habit. C hates being dirty in any way and yet hates bathing. We have tried having him wear regular underwear before. It becomes an issue though because he doesn’t feel the urge to go, then he leaks through the underwear into his clothing– especially when we are giving him stool softeners and laxatives. He is, understandably, hesitant to return to this situation. Despite that though, he has willingly gone along with this change. We’ve set the bathroom up with plenty of clean underwear for him and a special bin for his soiled clothing. The reward for telling us each time he notices that he needs to be cleaned up is a sticker on a chart and a reward after a certain number of stickers. For now, he is still allowed pullups at night. We are not ready to fight that battle yet.

Sitting properly means sitting up straight (rather than slouched over with his head on his knees) and using the ‘Squatty Potty’ Stool (rather than letting his feet hang). This sounds simple, and it is, in concept. But C has a hard time sitting up straight on the toilet, saying that it makes his legs hurt. With his sensory issues, this ‘hurt’ may simply be discomfort because he is not used to the position, or it could actually be pain. We don’t know and he can’t find a way to describe it other than it hurts. For now, the sitting position is our big hurdle. We have previously provided toilet seat covers and cushions to ease his discomfort, but he still won’t sit properly. We are even considering buying a new toilet seat just to see if the shape makes a difference. His anticipating that it will ‘hurt’ when he sits leads to anxiety which makes him tense; being tense is not conducive to our goal. So, between having to convince him to sit properly and his resisting, this stage may take a while to accomplish.

Meanwhile, we still don’t have definite answers to his lack of feeling urgency other than that his intestines are so stretched out that the nerves aren’t firing the proper messages, if at all. The goal of these therapies is to heal and shrink his gut back to normal, yet that won’t happen until he can have regular movements. Not being able to poop regularly causes things to back up and the gut to stretch and the cycle continues. I feel like we are in a holding pattern. We keep getting the same ineffective advice and remain in the same situation. At some point, something must change.

(I feel like I need to point out to various readers that yes, we’ve tried removing gluten from his diet. We limit sugar and dairy. We increased his fiber intake. We even tried essential oils. There are some situations that must be dealt with using modern medicine. This is one of those times.)

So, I am defeated today. I want to throw in the towel. I want to run away and not have to face these tough decisions anymore, but I won’t. I will fix myself a grownup beverage and sit in the sun on my deck. I will pretend for a short time that I’m somewhere free of worry. Then, I will step back into reality and try again. I will go to the next appointment with my head held high, knowing that we are doing everything in our power to help our child, and I will fight for something new to be tried.

More Cowbell

We’ve been very busy lately and it has been a few months since I updated everyone on what is going on with C.

Before I do, I want to share this… One of my very favorite Saturday Night Live skits that I recently rediscovered.(Here) Now that’s done, on with the updates.

We got the results back from the anorectal manometry procedure that I previously wrote about and it indicated that he does, in fact, have proper muscle function in his lower gut, but that they are not being used properly; this is likely related to his Executive Function delay. The results caused our GI doctor to recommend behavioral therapy with biofeedback which has had success in other patients but, as of right now, we are still waiting for a referral to someone that provides this service.

Hearing the word ‘behavioral’ connected to his gut issues is, yet again, hard to swallow since we’ve heard it so often over the years. However, if you look at it in the proper context, with the proper explanation (something we had not been previously given), it makes sense. It is not behavioral in the sense that he is defiant, it’s behavioral in the sense that he needs to learn how to use that part of his body properly, and behavioral in the sense that he needs to be more proactive in his health. He needs to take the vitamins and medicines we offer, eat the correct foods, go to therapy, practice what he learns, and spend time on the toilet. In theory, all these things will lead to his being able to get out of his pull-ups, wear normal underwear, and not worry about accidents.

The drawback to all of this is that I lack complete confidence in this assessment. One thing that stood out to me, during the procedure, is the final test that they performed. They are supposed to inflate the balloon until he feels it but, the doctor just zipped through the test and I don’t think C felt it at all. Which would be consistent with what he’s told us all along of not feeling the urge to go, and not feeling it when he does go.

Meanwhile, we have been seeing his psychiatrist and working with him to balance the medications used to treat C’s anxiety, depression, and ADHD. So far, we’ve found a good balance, although he still struggles with agoraphobia. Just getting him outside to play is a battle.

We have also been trying to figure out what might be causing an idiopathic low-grade fever. He has been fighting this fever for at least 6 months. He complains daily about being tired and, when he does feel good enough to do something active, it’s short lived because his legs ache or he quickly becomes tired. We have asked doctors and they all seem to agree that it not linked to the constipation. We’ve had blood tests drawn. Everything seems normal. Recently we were referred to a pediatric rheumatologist. Thankfully, she ruled out rheumatism as an issue for us to worry about.

One thing that the rheumatologist did say that we found useful and interesting was that he should be taking vitamin D daily. Where we live, there are a lot of overcast days, especially in the winter (the American Pacific Northwest and the UK have nearly identical climates). Most people in this region are vitamin D deficient. Without running a blood test, she felt confident that a daily vitamin D regimen could help his achy, tired body issues. She also felt that all his symptoms are linked together: his anxiety keeps him in a flight-or-fight state which causes constant stress. Constant stress and anxiety keep the body tense, which makes it hard to relax enough to potty. You can’t go potty, so you get stressed. It’s this cycle of stress feeding itself. Many times, a body reacts to stress with a fever. Of course, this led me to do a search for low-grade fever issues and came up with a term called Psychogenic Fever. One of the articles I found on the National Institutes of Health website described it this way:

Psychogenic fever is one of the most common psychosomatic diseases. Patients with psychogenic fever have acute or persistent body temperature above normal range in psychologically stressful situations.

Another interesting but technical medical article about Psychogenic Fever can be found here. Lastly, another article about schoolchildren developing fevers during testing times was also interesting and can be found here.

It all fits what we see in him, yet we can’t seem to find a resolution that works. We have tried bowel-specific physical therapy. We have tried medication, stool softeners, a high fiber diet, vitamins and so on. He still can’t grasp the process to defecate. Hubs and I will be meeting with a psychologist this week to see if she feels that she can help us work with his needs, and then C will meet with her a couple days later. Hopefully, she will have an idea of how to improve things for him. If she is unable to help, I have a strong feeling we will end up looking into a Cecostomy. It’s not ideal but, at this point, we are looking to provide him with any form of relief so that he has less stress and improved mental health.

Maybe once his gut is healed, he will have a fever of a different kind. A fever for more cowbell!Cowbell

Autism, Anxiety and more oh my!

As most of my readers know, my family and I have been on a tumultuous trip to find a diagnosis of our youngest kiddo. Early on, we knew he viewed life a bit different, but we couldn’t figure out if his behavior was unique, or if he was emulating his older brother, who is on the autism spectrum. He seemed neurotypical most of the time but had, what seemed like, behavioral and sensory issues.

At age 5 and 6 he was observed twice by the autism clinic that had diagnosed his brother, due to the increased chance of a younger child having autism when a sibling does. Both times that the doctor saw C, she felt that he was “too social” to merit a formal evaluation and/or diagnosis. Considering that underdeveloped social behavior is often a key in diagnosis, we felt that this result meant that we could move on from autism and proceed in another direction.

As he got older, he seemed to socialize appropriately, although minimally, with preschool kids and other friends. He asked to have playdates with friends, something we hadn’t yet encountered with E. He excelled in his preschool environment. At home, he still had many behavioral issues though. He was extremely sensitive emotionally, and to things like food textures and loud sounds. Red flags started showing up in my mind, making me suspect that the negative autism diagnosis was wrong.

Potty training seemed to go well enough and he did so well in preschool that he started kindergarten as planned. This is when things got really difficult. He started having potty accidents at school followed by emotional meltdowns from the embarrassment. He felt like no one liked him. It was too loud and busy. It overwhelmed him. The teacher tried his best and felt like C was just a little more emotional than other students but that he’d grow out of it. After-school pickup became the worst part of my day. He’d completely fall apart at home, often as soon as he got in the car. Then morning drop-off became a challenge. He started resisting getting dressed, getting out of the car and so on. His teacher reported that he often would curl up and cry under one of the tables during snack time, rather than choose a snack. Soon, our family life began to suffer. Hubby and I were so stressed and overwhelmed. We were struggling to find the tools to help E with his many issues, as well as figure out what was going on with C.

We made the decision to homeschool. We had already started homeschooling E, due to his intense anxiety. It seemed to help and make things easier for him. We joined an alternative school program where the boys did their work at home, led by me, then met with their official teacher weekly to review what they were learning and make sure that they were progressing. Eventually, C started to fight even going to this weekly meeting. When he did go, he wouldn’t talk much or share with the teacher, especially if I was in the room. Some days, I couldn’t even get him to leave the house.

As time went on, we tried to meet with another pediatric psych doctor for some sort of evaluation. He did a perfunctory evaluation and was very unhelpful, indicating that we were not strict enough as parents and we needed to do better, claiming that there was nothing wrong with our child; there was no need for evaluation or intervention. Looking for a second opinion, we found a local family psychologist who, right away, noticed ADHD symptoms and recommended we get him occupational and physical therapy evaluations. We were able to connect with a wonderful place, several hours away, that did evaluations and recommended therapy for both of our boys. They even caught an eye issue that C had, and sent us for a formal visual therapy evaluation.

After all this time we were finally getting some help. The drawback was that it was quite a distance for us to reach these therapies; about 3.5 hours each way. We would end up staying away from home (including travel days) for three days, every other week. This took a toll on us all. Especially the boys. They would suffer from a “sensory hangover” for days afterwards, which led to less school and activity. Every other week was a wash. It was expensive and time consuming. It was exhausting to me, being the chauffeur so that dad could work.

On top of all that, we realized that C was not using the bathroom as expected. Once it dawned on us, we started keeping track and noticed that he often would go a week to three weeks between bowel movements. At one point, he became so impacted that he couldn’t urinate, requiring a trip in a helicopter to the nearest hospital. Other times, we would end up in a children’s ER (A&E), which was another impressive distance from home.
Because of how far away we lived from advanced medical facilities, we made the decision to uproot and move to a city 300 miles (480km) away. We sacrificed a lot to make that move happen but, if it helped the boys, it would be worth it.

Even in our new home, C’s behavior continued to deteriorate. His anxiety took over. His self-esteem crashed. His GI issues became worse. We found a great pediatrician who gave us referrals to specialists. We started working with a pediatric gastroenterologist (GI doctor). After three hospital stays for bowel cleanouts in a year and a half, we were able to get a referral to a psychologist who performed a neuropsychological evaluation. We were given tentative diagnoses. Tentative doesn’t work for insurance, so we decided to pursue a more official diagnosis.

We were put in touch with a facility that works exclusively with pediatric mental health. After evaluations by a psychiatrist and a psychologist, and much waiting and uncertainty, we finally have results. C has officially been diagnosed with High Functioning Autism, ADHD, Anxiety and Depression; a potent combination of issues. One of the things I suspect got in the way of a true diagnosis for so long was Masking. Masking happens with kids on the spectrum who are aware of their differences and are skilled at hiding them so that they appear normal, helping them avoid social stigma.
Along with this, we realized that our GI doctor was convinced that C’s issues were simply behavioral, with no physiological cause. Since C is very distressed by his bowel issues and tries, without prompting, to do what he needs to do, we decided to get a second opinion. Something that has worried me, is how much medication the previous GI doctor had C taking. Most of the medications are not meant for long-term use due to dependency issues. Were we making things worse?

Our new GI doctor was amazing. He is the head of the pediatric GI department and is a professor at the medical school. Apparently, he doesn’t often take patients but, C’s issues intrigued him (maybe he just felt sorry for us). He took what we already had gone through and moved forward, rather than rehashing everything. He had us take C off all the medication the prior GI doc has prescribed and agreed that there is a good chance that there is something more than simply behavioral withholding going on. He had us meet with a GI psychologist and GI dietitian to see if they could offer any additional advice. Both felt that we have been doing the right things and didn’t offer much in the way of help. Disappointing, but it was worth a shot. Now we are approaching the day that C is to have a small procedure called an Anorectal Manometry. This uses a catheter and a balloon to measure the rectal muscle contractions to see if they are functioning properly. Hopefully this will help us determine how to proceed and let our wonderful nine-year-old boy enjoy a normal life in normal underwear. Until then, all we can do is take it a day at a time.

The Imagined Fear

snarlA German proverb states: “Fear makes the wolf bigger than he is.”

Fear presents itself in our lives in many ways. It can be anywhere from mild to severe. It can seem silly or it can feel so intense that we shut down. Where does this fear come from?

In our brain, there is a small region called the amygdala. This small region is responsible for our fight-or-flight response and other intense emotions. An article from Smithstonian.com,What Happens in the Brain When We Feel Fear? describes it really well:

“This almond-shaped set of nuclei in the temporal lobe of the brain is dedicated to detecting the emotional salience of the stimuli – how much something stands out to us.

For example, the amygdala activates whenever we see a human face with an emotion. This reaction is more pronounced with anger and fear. A threat stimulus, such as the sight of a predator, triggers a fear response in the amygdala, which activates areas involved in preparation for motor functions involved in fight or flight. It also triggers release of stress hormones and sympathetic nervous system.

This leads to bodily changes that prepare us to be more efficient in a danger: The brain becomes hyperalert, pupils dilate, the bronchi dilate and breathing accelerates. Heart rate and blood pressure rise. Blood flow and stream of glucose to the skeletal muscles increase. Organs not vital in survival such as the gastrointestinal system slow down.”

All of this works to keep us safe from a perceived threat. What happens, though, when that perceived threat is not actually a threat? Or not perceived but imagined. Your body fb9da28e9e733228171c5b79d542704cstarts reacting, your feelings of fear rise, and you feel anxious. If you realize that you are safe and not in immediate danger, your system should revert to a calm state. In essence, you experienced the “wolf bigger than it was” for a brief moment. It’s an amazing response system.

However, there are times when our amygdala gets things wrong. We get this sense of fear than ends up taking over and becoming larger than needed. This is the case with both of our boys, but today I’m focusing on Mr. E. He has high anxiety and has developed Entomophobia. Wikipedia states:

Entomophobia (also known as insectophobia) is a specific phobia characterized by an excessive or unrealistic fear of one or more classes of insect… entomophobia leads to behavioral changes: the person with entomophobia will avoid situations where they may encounter the specific type of insect.

Way before we knew he had anxiety or autism, he presented with typical toddler behavior when it came to playing outside and exploring. We took frequent walks. He Lizard-Brain_whitewould stoop to look at this puddle or that bug. Then came the day of the bee attack on his younger brother. E was probably 4 years old at the time and C was about 19 months. The kids were outside playing with their cousins, who had come from California to visit. C got to exploring (as kids do) and found a wasp nest under our deck, which he proceeded to pull apart. There are discrepancies as to the number of times C was stung before we could get him in the house to safety but, it was more than a few. E saw it happen from a distance and has forever been traumatized by it. Since then, C has been stung twice more and yet, still has no issues with bees. Thank goodness he was not allergic!

So, E has been afraid of bees since. Unfortunately, he has not been able to conquer this fear with logic and it has morphed into a phobia (Apiphobia ). This, in turn, has morphed into a fear of all bugs and insects.

His phobia has become so intense that he struggles to go outside for any reason. He is unable to walk the 50 feet (15m) to the mailbox by himself. Unable to enjoy riding his bike or playing outside with the dogs. He even struggles just getting to the car if it’s parked in the driveway. He has not given up on trying to overcome it but, he has struggled to find success.

"Eeuuuggghhhh! These humans get bigger every year."
“Eeuuuggghhhh! These humans get bigger every year.”

After a recent meeting with his new psychologist, we now have a plan. E desperately wants to crush this phobia into a thing of the past. With his willingness, we are about to take on what is known as Exposure Therapy. From what I understand, there are generally two schools of thought regarding “treating/curing” phobias.

The first is call Flooding”. This type of exposure therapy can be a faster approach to ending a phobia but, it can also be more traumatic to begin and many people give up before they succeed. For example, if we were using Flooding to treat E’s apiphobia, he would be subjected to sitting in a room full of bees. This would go on for a duration and over time, and most likely several sessions, his amygdala would learn that he is not going to be hurt and his fear diminishes; essentially, retraining his fight-or-flight response to seeing a bee.

However, we have decided to go with the Fear Hierarchy method. This is slow and steady; the ‘turtle’ method as opposed to the ‘rabbit’ method of flooding. With E’s anxiety levels we felt this was the better course of treatment.

Our plan has started with identifying his fear (bugs), what he believes will happen (they might cause harm), and then creating a list of, at minimum, ten activities that he is willing to work at over time in order to desensitize himself to bugs. We’ve used a scale of 1-10, with 1 being easy, and 10 being very challenging, to itemize his list of activities. We will start with an easy item; something that he scored as a 1. We will spend 30 minutes a day doing that activity until he scores it as 0. Basically, it is no longer causing fear or anxiety. For E, his first activity is looking at pictures of bugs. That’s it. Knowing that it makes him slightly uncomfortable, but is something he can manage right away, we, ideally, will spend just a few days doing this before moving on to the next level. Other items on the list register at a 10 on the comfort scale. Something like holding a bug or having one land on him, is very uncomfortable and may take weeks or months of work. Time is not the important thing but, going slow, keeping him comfortable, and, building his confidence. These things are what’s important to taking that next step and retraining his amygdala to not react.wolf pup

So, if the German Proverb states that fear makes the wolf bigger, then we are trying to take that fear away and make the wolf a puppy.

Box of Chocolates

Today, I have no profound news to share but, I want to tell you the story of my day.

We live in the Pacific Northwest and, as you may or may not know, we have been under a blanket of smoke for quite some time due to various wild fires in just about every direction. The air quality has been deemed unhealthy for select groups, like those with asthma and so on. Not surprisingly, E falls into that category so, we have mostly remained indoors.

Today, the air was clear and the temperature was cooler. It just screamed, “Go Outside!” After a successful doctor’s appointment, we decided to go to the zoo; enjoy the animals, get some good exercise and, generally, just breathe in fresh air. Both of the boys were on board with this idea, which is rare. Usually, one wants the opposite of the other.

As we exit the freeway, we are already seeing a long line of cars, slowly creeping towards the zoo parking lot. Then we see signs at each lot, stating that that parking lot is full. I cannot stress enough how crowded this place was. People were everywhere! Normally, I’m a person that thinks, “ugh, people…” and would head home and come another day. Today, however, probably spurred on by a feeling of cabin fever, and the boys still wanting to go, we circle the lots and head for the overflow parking. As, we are driving, E is getting quieter and quieter. We park and hop on a school bus that’s being used as a shuttle. E, still quiet, sits by the window and stares out, while C is a wiggle-worm on my lap thanks to an over-full bus. I ask E if he is okay. He mumbles that he’s fine, just tired. A typical canned response. But he is not fine. He is overwhelmed by the thought of all the people at the zoo and those riding on the bus with us. C’s activity and noises irks him. He gets grumbly.

Mind you, the ride is likely no more than 5 minutes. However, it’s just enough time to push E over the edge towards the “Tween Attitude.” When we get off the bus, C starts skipping along ahead of us towards the gate and E starts parenting him, telling him to stop this and stop that. I, then, have to chide E and remind him that I am the parent and can handle anything C does that might be wrong.

Our first stop is the bathroom. As we wait for E, C spots the “very special” vending machine. The only place he knows of to get Dippin Dots.’ (For those who don’t know, Dippin’ Dots is an ice cream snack made by flash freezing drops of ice cream in liquid nitrogen.)  I know that eating a frozen treat will make him cold, so I tell him we will grab some on the way out so that he can have the warmth of the car after he finishes it. All is well on that front for the time being.

E seems cranky but alright, and we proceed to wander. I let the boys lead and choose what we see. E loves to stop at all the educational spots: solve all the puzzles, learn all the things. Things are going well, aside from his parenting instincts refusing to wait until he has his own child. However, as we progress, maybe ten minutes into our trip, he is starting to “act out.” Now, when E acts out, it’s not your typical bad behavior or meltdown scenario. He starts growling, walking tense, and mouthing off at every turn. This is partly due to his age and partly due to his ASD. Every time I try to chat with him and soothe him, it’s like he’s smacking me but with his words. He is cranky, and I seem to be making it worse. So, I leave him be, knowing he will soothe himself eventually.

We were able to see a few of the animals that we haven’t yet seen on this visit. Usually, they are asleep in their dens or out of sight. This time however, we saw the elusive bobcats, leopards, and tigers. Now, my boys are huge cat fans, so this worked wonders to improve Mr. Grumpy Pants’ attitude.

Danger-Will-RobinsonAfter a few hours, we were all satisfied and head for the exit. C, still skipping all over creation, but getting more and more worn out, heads for the prized vending machine. I start pulling out my wallet and find that I only have a single dollar; the Dippin’ Dots are $4, and the machine doesn’t take credit cards. “Warning! Warning! Danger, Will Robinson!”

Cue meltdown moans. Quickly, I spring into action. “Hey, lets go see if they sell any in the gift shop and, if not, maybe we will find something even better!” So, we wander around and look at everything at least twice. C starts getting wild, a sure sign he is about to go into sensory overload. He wants one of everything, and can’t make up his mind. An aspect of his executive function issues is the inability to make decisions, thus becoming overwhelmed. I step in and pick something out for him and he’s happy but, he is still hung up on what to choose. Once E makes his pick, we go to pay. I ask the cashier about cash back, which they don’t do, and am directed to the ATM outside. At this point, I’ve spent enough money, and just want to go home but, C is headed for a full-blown meltdown over those dang Dippin’ Dots so, I check out the ATM. They charge a use fee of $3 to take out money, and my penny-pinching side shows up.

“I am not going to spend almost the same amount in fees as it is for the stupid treat; I just spent more money than I planned to at the gift shop. Stop spoiling this child and go home!”

Caleb is now quite put out. He loves his new stuffed animal, but is angry that he didn’t get everything he wanted. Granted, it sounds like I’m describing a spoiled brat or a toddler, but I’m not. I’m talking about my almost-9-year-old son who, pathologically, has no control over this behavior.

As I watch him stomp down the sidewalk, arms drooping, head down, I remind myself that he is trying his best. He is not on the ground throwing a fit. He is not yelling or hitting me. He is not banging his head on a wall or my body as I’m trying to walk. He is removing himself as best he can from a situation that pushed him too far.

On the bus back to our car, he wouldn’t sit with me and he kept sniffing in his overly-dramatic way. But, in the car he said to me in a quiet voice: “Mom, I’m sorry about this. I don’t know why I act like this and I hate it.”

Oh, gut punch. He is a good kid. He is trying his best with the tools he has. He is very aware of his actions and does not like them, yet, doesn’t know how to change or control them yet. Here’ another subtle reminder of the differences of autism– no one person is the same. My two boys: case in point. One has internal meltdowns or shuts down (I recently read a post explaining internal meltdowns here) and, the other, becomes hyperactive then melts down. I guess Forest Gump was right:

“Life is like a box of chocolates. You just never know what you’re gonna get.”

box-of-chocolates-forrest-gump

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