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

The Fly

The other day we had a fly get into the house. For most, this would not be a big deal. Most people would just swat at it or ignore it until it leaves or dies on its own. No, we don’t like them in our house, but for three of us, they aren’t a big deal… until they are.

The Fly ScreamSo, we had a fly buzzing around. Now E, with his entomophobia, was not pleased with this situation. Although he has been working on this phobia with his therapist, using exposure therapy, he went straight into panic mode this time. He begged us to ‘get it,’ frantically pointing to where it was every 30 seconds. Dad grabbed the electric fly swatter that we bought, hoping it would give E a feeing of control and power over the flies. So, while Dad is trying to track this small thing, E is panic stricken and loud which then feeds into the dogs’ excitement and they start going crazy. Needless to say, the whole house was in uproar. Everything stopped until that fly was dead. E got banished to his bedroom to hide and calm down. Dad kills the fly, Ethan comes out of his room, things return to normal… until we had a second fly a few minutes later. Panic sets in again. Dogs go crazy, E and C are yelling, and there is no reasoning with anyone until the fly is gone. Eventually Dad was able to talk to E and explain that it is much harder to catch the fly when everyone is yelling and jumping around towards the fly to point it out. Each time that happened, the fly would move. It’s much more effective to sit still and track the fly with your eyes and tell Dad where it is so that he can slowly stalk it. We got the dogs outside, and E goes to his room again, only to come out later, explaining that he can’t stand not knowing what’s happening. Eventually, Dad traps the fly against a window with the curtain and has E smush it. It was a gross goopy mess on my curtains but a good experience for E in personally defeating something so scary to him.

To us, it was just a small fly. It would buzz around a bit and eventually, after a few days, die (if the dogs didn’t eat it first). To him though, this fly was a huge horrible monster bug that scared him because it was unpredictable.

The next visit to the therapist brought a new strategy. We were advised to purchase a small package of fake rubber flies. Allow E to use these flies to prank other members of the family. Then we in turn prank him and so on until he is more comfortable. We were also to just place random flies around the house – if he finds them, he gets a small reward. This may help with desensitization with incidental exposure to real flies.

So, we purchase the flies online. E is aware of this new plan and agrees with it. The day the flies arrive in the mail, Dad and I are too excited to remember that E was supposed to have control of them at first and we decide to have a bit of fun with him, subtly placing one on the table next to his water bottle. He doesn’t notice right away but, when he does, he jumps, yells, and gets angry at us. We talk it out, he feels better, and we surprise him with another fly at another time. Again, it doesn’t go great, but he seems less mad. It seems that we are on track with this new program. Later that evening, we remember that we were supposed to let E play with the flies first. Oops.

Eventually, this plan involves the use of real flies in a jar to be studied. When that becomes less scary, we’ll release it into a small room like the bathroom, and sit with him while he sits, aware that the fly is in the same room and, eventually, move that idea to the whole house. The idea is to desensitize him to the stress of surprise. Personally, I see this phase taking a long time. I’m not super excited about purposely setting flies loose in my house, but if it helps my son, I’m game.

Stomatitis

This past winter felt especially hard on our family. In addition to relentless dark, grey skies with limited snow, the hubs lost his job, had kidney stone surgery, then had complications from that surgery that put him back in the hospital for a few days. It seems like everyone had been fighting illness or some form of or another.

One of the weird illnesses that made its way into our house was Stomatitis. A ‘scary’ sounding name for a mouth virus in the herpes family. Closely related to canker sores or cold sores, stomatitis makes the mouth and tongue itch.

You can read about Stomatitis via Wikipedia here, but a simple explanation can be found at the Encyclopedia of Children’s Health where it states:

Stomatitis is an inflammation of the mucous lining of the mouth, which may involve the cheeks, gums, tongue, lips, and roof or floor of the mouth. The word “stomatitis” literally means inflammation of the mouth.
Depending upon its cause, stomatitis may or may not be contagious. Herpes stomatitis is considered contagious. Children may be exposed through kissing, sharing food, or playing in close contact with others who have an active herpes infection, such as a cold sore. Aphthous stomatitis is not contagious.

Poor E had been dealing with an itchy tongue for several weeks. However, he only mentioned it to us once or twice during that time. Then, one night, it got bad. We tried allergy medication, we tried numbing cough drops; after lots of commotion he finally fell asleep many hours past his bedtime, only to wake up again after just three hours of sleep. The next day, we had to cancel our family plans for the day due to his limited sleep and, after trying to get through the day, took him to urgent care.

With fresh diagnosis in hand, he was prescribed a lidocaine-based mouthwash to numb the tongue and mouth as needed. Basically, since it’s a virus, it must run its course.

Unfortunately, the sensations of itching and numbing pushed E into sensory overload for days. There was much more stimming, tempers and overloads; so much so that his ability to focus and follow directions as normal was just about non-existent. It was challenging, but we survived, and it passed.

One of my favorite sayings that is all too familiar in our house (although I don’t know the author) is:

“This too shall pass. It’ll pass like a kidney stone, but it will pass!”

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