Surgery

Oh, the ignorance of my parenting. I should have known things would not change as easy as it seemed.

C was terrified with the concept of this surgery. He did not want an extra hole in his body. The Fear of the Unknown plagued him. He spent nights awake out of fear. We spent days trying to talk it out, explaining how wonderfully easy the surgery would be for him, how much better he would feel when it was done and his body could heal, how much happier he would be out of pull-ups and into regular underwear.

It was the beginning of July when the hospital called. We finally got a surgical date for Mr. C. and it was only 2 weeks away! Plans were set in place, arrangements were made. Before we knew it, the week of surgery came. I drove, along with my mom, the three hours to the hospital. After a couple of nights awake, C was tired, and it was not long before he was asleep in the car. We stopped for a bite to eat around lunchtime but could not rouse him.

After lunch, we had to take C to take a COVID test before the hospital would admit him. We found the testing location and drove up to the line. A nurse in full bio-hazard gear approached to confirm our identity then went back to the shade of their tent to grab his test. C was still sleeping fairly sound. I talked to him, attempting to wake him; his eyes fluttered but he was too drowsy to wake. At the nurse’s request, I climbed into the back seat to help hold C still while she gathered the sample. She pulled out what, resembled a long-handled mascara brush or miniature bottle brush. This could be bad. Having sensory issues, he is particularly sensitive with his nose; he will not blow it, just wipe, and gets frequent nose bleeds. She explains how nice and quick this test is and proceeds to shove the brush (aka Daggers on a Stick) up C’s nose to the back of his sinus cavity and twirls it around for 10 seconds. He woke with a start and jerked his head back, crying about how it hurt. I had to hold him down, restraining his head and he’s now screaming, Nana is crying (it’s torture to watch this happen) and I’m trying to keep it together; this was the longest 10 seconds of my life! Finally, the sample is gathered and we are sent on our merry way. C was wide awake after that. He explained how much it hurt but didn’t overreact as he has been known to do. He was amazingly brave.

We find the hotel that the hospital provided for us and check in. It’s mid-afternoon and we have no where to go.

It is strange traveling during this pandemic. You can mask up and sanitize and still go out in public. However, if you are immune-compromised, elderly, or about to have surgery, you’re advised to avoid going out. With C and Nana, we struck two out of three on that list and needed to remain in our hotel room for the duration of our stay. No going to the pool, no hanging out in the cozy lounge off the lobby, no eating in the restaurant. We settle in for a long evening of tablets and television. C was perfectly happy. It was harder for the adults.

Another fun day one activity was the administration of pre-surgery antibiotics. At three specific times, C had to take two different antibiotics which were known to make some people nauseated. They, of course, did make C feel horrible and, on an empty stomach because he slept though lunch, he was miserable. When the restaurant opened up for room service that evening, we ordered food and hoped that would help. Unfortunately, C had fallen back into a restless sleep. You could see on his face that he was having stomach cramping. He slept until 11:00 when we had to wake him for his last dose of antibiotics. He didn’t want the food we had ordered for him, but I was able to get him to snack on some crackers, which helped avoid more vomiting. He stayed awake again all night.

On day two, we checked into the hospital and were rapidly taken to a room to be processed. The hospital felt so empty; it was weird. In the surgery prep room, C’s fear really skyrocketed. The poor kid was terrified and just wanted to go home. We met the nurses and the surgeon, and one of the last to come in was the anesthesiologist. He was an older gentleman, and we were his last patients of the day. He spent a lot of time trying to talk to C and calm his fears. He noticed C’s anxiety and suggested that I could go back with them to the operating room and be with him until he fell asleep from the sleepy gas. This was good, and C accepted the offer but, I was frustrated because the surgeon and I had previously made other plans. The anesthesiologist must not have read the notes. This was my first hint that the day was veering off course. My plan with the surgeon had involved pre-medicating C with an anti-anxiety medication that would calm and relax him, making the whole process easier on the kiddo. He typically doesn’t react well to anesthesia and that was just one more thing to be afraid of.

The time came to walk to the operating room. C was finally resigned but was encouraged that I would be there with him. He walked with the nurses down the halls to the room, the doctor and I trailing behind. He’s very mechanically inclined and, in the OR, he was fascinated with everything, asking questions about what things were for and how they worked. He amiably got on the table and cooperated with everyone. I was so proud!

Time for the gas. He was given the option of different scents for the anesthetic gas to make it smell  more pleasant. The gas itself had a somewhat unpleasant smell along the lines of gasoline. C asked for one scent after another but found them all too strong for his sensitive nose. At this point the anesthesiologist is irritated and dismissive of C’s gagging, insisting that he was just trying to get out of the surgery. I tried to explain C’s sensory issues, his strong gag reflex… only to be ignored. I may have been allowed in the room, but I was not listened to. This “doctor”, annoyed and, presumably, ready to be done for the day, forcefully held C’s head still, encouraged four or so nurses to hold him down, had one nurse turn the gas on full, and shoved the mask onto C’s face until he passed out. I was shocked beyond words.

I felt like a failure as an advocate. The surgeon and I had a plan to make this as easy as possible, but it was ignored. Maybe I should have run over to this man and yanked him free of C, chewed him out perhaps, telling him to read the bleeping chart, that he was working with a special needs child. But I just stood there, shocked that this was happening.

In moments, C was asleep, his lips slightly blue. I was told to kiss him goodnight and leave the room. I leaned down and kissed his dry, blue lips, tamping down the feeling that he was dead. He sure looked dead. I followed the nurse back to the prep room where we had left Nana and our things, and I lost it. I cried at the injustice of it, my feeling of helplessness, and the fear that C likely experienced. After a while, I pulled myself together, held my head up high and walked into the waiting room. Now I was livid. My tears had turned to steam! How dare this happen?! I am C’s advocate. If he can’t or won’t speak up, then I will.

Nana and I wandered the gift shop, and then headed back down to the waiting area. There, I called my husband and relived the trauma of seeing our son forced to sleep. He was livid too and agreed that I needed to speak up. Our son may be past the point of no return with this “doctor,” but we could not let that happen to someone else’s baby if it was within our power to help.

When we finally saw the surgeon, I was pissed off, however, I knew she was not the one at fault. I calmly explained how unhappy I was with what happened, asked and answered questions, and was finally satisfied that she would deal with said doctor.

Thankfully, the surgery went well, but C took a very long time to wake up. Poor kiddo woke up about 9:30p and was awake until about 4 or 5 am. Once we were settled and quarantined in the room with him, we realized how exhausted we adults were. C was fine, entertaining the nurse, making suggestions on how to provide his care, and watching shows on his tablet. The next days were a bit monotonous. C was doing great, having only light pain which kept him off narcotics and on basic pain killers. He ate well and healed well. Two days after surgery we were sent home.

C was happy, feeling good and things seemed on an even keel. We were told to wait a week before we used the port or let him bathe or shower. All was well until he woke up in the middle of the night a day later, vomiting. After vomiting for almost 24 hours, every couple of hours, unable to keep anything down, we made the decision, along with the surgery center, to take him to the local ER. Thankfully, his surgical site was perfectly fine and he had no fever. When his vitals were taken his blood pressure was high and his oxygen a bit low. Of course, my worried mind goes straight to the what-ifs, but completely unnecessary; it was determined that C had gastroenteritis coincidentally. We had gone straight home from the hospital when he was released, and nowhere else. Where he caught a stomach bug is beyond me. The good news was that, after he was treated for dehydration and given some anti-nausea medicine, we were allowed to go home later that night.

C appears to be great these days, physically. Mentally, he is taking everything in. He has no memory of the trauma with the anesthesiologist (thankfully), but having surgery for the first time, and having your body physically changed takes a toll. He’s needy and emotional, but I don’t mind. Right now, I’m soaking up the hugs and snuggles. I know that, one day in the not too distant future, he will not ask so often for hugs and snuggles. I will miss these days.

Wait you think that’s the end? Oh no! Now we address the fact that everything seems to overwhelm C now that he’s processing all that he’s been through. He’s terrified again, this time about using his new port. He is afraid it will fall out, something will leak out, or something unknown will go horribly wrong so refuses to cooperate with us in using it. We have been trying to work with him each day; talking about things, try to reason with him. Maybe he just needs extra time to process the new sensations and become brave and use it. Maybe not. He has stated it hurts less as the days march on.

For now, we are happy with baby steps, continuing his previous regimen to keep him regular, and continuing to build his confidence. Aside from the refusal to move to the next step, he is doing well. I doubt we could ask for much better than that.

The Danger Spiral

An ongoing topic in our home is Mr. C’s current poor gut health. There are a lot of things that can possibly be at the root of everything. Recently something new popped up on my radar. Pediatric Abdominal Epilepsy.

This is a fairly new topic, even in the medical community. My mother-in-law has told stories of often being in the hospital as a child due to a “nervous stomach.” Since not much was known at the time about gut health, simply managing symptoms with diet and/or medications has been the main process for many children’s ‘tummy ache.’ Then studies taught about allergies and irritable bowel, now common household terms. For a while now, it has not been uncommon to hear of the ‘brain-gut’ connection, many times in association with issues like gluten intolerance. This can be especially true when you have children with autism. Many times they do suffer from gluten intolerance or other diet issues. Our family tried going gluten free to attempt to manage both boys’ symptoms before they were officially diagnosed, with no noticeable changes. At times friends, who are learning of our circumstances, try to be helpful and suggest trying gluten-free. This is a nice gesture; however, we’ve been there, done that.

An article found on Johns Hopkins Medicine, which I highly recommend reading, said regarding the brain-gut connection:

“Hidden in the walls of the digestive system, this “brain in your gut” is revolutionizing medicine’s understanding of the links between digestion, mood, health and even the way you think. Scientists call this little brain the enteric nervous system (ENS)… The ENS may trigger big emotional shifts experienced by people coping with irritable bowel syndrome (IBS) and functional bowel problems such as constipation, diarrhea, bloating, pain and stomach upset. “For decades, researchers and doctors thought that anxiety and depression contributed to these problems. But our studies and others show that it may also be the other way around,” Pasricha says. Researchers are finding evidence that irritation in the gastrointestinal system may send signals to the central nervous system (CNS) that trigger mood changes.”

This is fascinating to me. This could have a huge impact on our family. C’s mental health has been plummeting the longer his gut is ignored. As his parents, we felt that he had so much going on that we needed to resolve just one thing to try to lighten his load mentally and decided to focus on figuring out his gut health. That has been our focus. Maybe, oddly enough, we are on the right track after all to helping other aspects of his health as well.

What does this have to do with Abdominal Epilepsy? Children’s Health Hospital defines abdominal epilepsy as:

“…an extremely rare, chronic (ongoing) condition that causes recurrent seizures that are not the result of another medical condition. The seizures can happen in the stomach and intestines and are more likely to occur in children than adults. “

Spectrum News mentions that:

“Autism frequently co-occurs with any of a long list of other conditions. But none may be more closely linked than epilepsy. Nearly half of all autistic people have epilepsy, according to some reports, suggesting that the two conditions share underlying biology. For example, both conditions are characterized by overly excitable brains…People with epilepsy are also more likely than others to have autism: A Swedish study of more than 85,000 people with epilepsy found that autism is 10 times more common in those individuals than in the general population…Several studies suggest that children who have both autism and intellectual disability are more likely to have epilepsy than other autistic children.”

Lastly, Wikipedia describes the most common symptom as:

“…abdominal pain followed by uncontrollable vomiting, usually preceded by lethargy. Symptoms also include generalized tonic-clonic seizures followed by sleep, confusion, and unresponsiveness.”

Now, I am no doctor, but I am a concerned mother. As a concerned mother, I research and read a lot of articles looking for clues that might help my child. This has proven beneficial in that I have aided in getting his diagnosis; however, it can also backfire and cause numerous nights of sleeplessness as I worry about the what if’s.

Mr. C has been struggling so much lately that we meet with his developmental pediatrician monthly as we try to find a good balance in medications and mental health. He has been wonderful in only adjusting one thing at a time, but as we do that, are we missing a bigger issue? Is his gut so unhealthy or getting unhealthier as days go by which then makes his mental health unstable?

After his past medication adjustment, we have seen an increase in an “upset tummy” or even full-on nausea, which leads to vomiting a few times and then fatigue for the rest of the day or even a nap shortly after. I’m not saying he has abdominal epilepsy, in all likelihood he just needs to take his medication with food, but the symptoms are similar enough that I plan to bring them up at his next appointment.  Maybe, his doctor will agree it’s worth a test or two, to rule things out. I like knowing one way or another. It gives me peace of mind and maybe we can find an answer with an easy treatment.

In my research on abdominal epilepsy another new term popped up on my scope: Absence seizures.

The Mayo Clinic describes absence seizures as:

“Absence seizures involve brief, sudden lapses of consciousness. They’re more common in children than in adults.

Someone having an absence seizure may look like he or she is staring blankly into space for a few seconds. Then, there is a quick return to a normal level of alertness. This type of seizure usually doesn’t lead to physical injury.”

And Wikipedia states:

“Absence seizures are brief (usually less than 20 seconds) generalized epileptic seizures of sudden onset and termination. When someone experiences an absence seizure they are often unaware of their episode. Those most susceptible to this are children, and the first episode usually occurs between 4–12 years old. It is very rare that someone older will experience their first absence seizure.[citation needed] Episodes of absence seizures can often be mistaken for inattentiveness when misdiagnosed, and can occur 50-100 times a day. They can be so difficult to detect that some people may go months or years before being given a proper diagnosis. There are no known before or aftereffects of absence seizures”

Of note, is that these types of seizures can be set off by a period of hyperventilating. One thing that C does often is loads of heavy breathing while amid a meltdown or tantrum.  At times he does in fact hyperventilate.

I personally have not noticed anything that could lead me to believe C has absence seizures, but considering the commonality of co-morbid diagnosis with autism and other learning delay’s, as well as C’s long list of issues, I feel strongly this is something I would want to watch for. Maybe even have the doctors test for. I hate not knowing things. I need to know, for C’s sake, for all our sakes. What does his future hold? Did I find something worth following through on, or am I spiraling in the “know enough to be dangerous” type of mothering?

Sum up

I cannot believe it has been almost a year since I last posted something. I would love to say that everything is great, and that we took time off to enjoy life but, sadly, we have had a lot going on over the past year.

A little over a year ago, we helped move my parents to a condo near us. With their advancing age, they began to need services that required long drives to bigger cities, and this was becoming difficult for them. We wanted to help, so we suggested that they consider moving nearer to us. While their health is not terrible, they do have challenges. My dad has diabetes and some severe mental health issues. My mom is a strong fighter but has struggled since a battle with breast cancer several years ago. They are doing well now, in their condo in a senior community that is only minutes from us. Mom has been a big help for us because she loves being “Nana,” and is generally available to help with the kids when I have needed a break or had a doctor’s appointment.

Other than that big change, things were pretty good for us and the kids. Surprisingly, everything seemed to even out for a while… and then E became a teen. I had read many times over that puberty mixed with autism is a whole new game– that it can feel like you’re starting from scratch, trying to figure your child out. Despite knowing that this was a possibility, I was woefully unprepared for what to expect.

Like most milestones in his life, E started puberty earlier than most, with the first signs of it starting around age 9. By the time he turned 13, this winter, he was a hot mess of boy adolescence. We have attitude, smells, and shaving. He no longer enjoys showers, and it is a fight to get him to bathe. We also have constant anger coupled to a hair trigger. I swear, I can no longer talk to my sweet boy without pissing him off somehow; I feel that he has been captured and locked away for the next several years, replaced with an unknown entity. The hardest part of all this is not the regression, the talking back, or the smells, but seeing this kid not understand “what he did wrong” or “why everyone seems mad at him.” He has always keenly sensed that he is different and, unfortunately, with autism’s social disadvantages, he struggles to see the issues, even if they are pointed out to him. He is extremely domineering to the dogs and his brother, leading to constant fights and hurt feelings.

Now we circle around to C. This poor child; I can’t even figure out what to begin with. He has been professionally diagnosed with ADHD, ASD, ODD, EFD, SPD, 2E, Functional Constipation, Encopresis, Binocular Convergence Insufficiency, and poor Gut Health, all of which I have mentioned before at some point. We are fairly certain he also deals with Auditory Processing Disorder or a slow processing delay, but doctors have not confirmed those.

The more urgent of his issues, however, is his gut health. Last year, I wrote about how we had connected with a great new GI doctor and things felt so positive. C had a small procedure called an Anorectal Manometry. This procedure would tell us if his rectal muscles were functioning properly, and to rule out a condition called Hirschsprung’s Disease. The results of the test showed that the rectal muscles are working properly. However, nothing was said about Hirschsprung’s. C previously also had an MRI on his lower spine to rule out Spina Bifida, which was negative.

So, at this point, our wonderful new doctor was stumped. Due to the fact that he was still creating a Motility Program for his hospital, he decided to send us to Seattle Children’s where they have an entire department with doctors very well versed in issues like this. So, we again go through the process to see a new doctor.

Our first appointment at Seattle Children’s is arranged, and they want to do another anorectal manometry because they have access to a more informative test. Again, the test seems to be inconclusive for Hirschsprung’s. Moving forward, the doctor then orders a Sitz Marker Test which should tell us how long things take to enter and exit the colon. All this test requires is for C to swallow a capsule full of tiny radio-opaque markers and, in a week, get an x-ray to see where the markers are. Theoretically, they should have passed out of his system. However, the x-ray showed that all 25 markers were still in his colon. Counterintuitively, this is a positive result: it shows that he isn’t eliminating at the rate he should.

I could have gone all snarky with this poor doctor, but I didn’t. I mean duh, he only has a BM every other week or so, even while taking medications to help. Obviously, he wasn’t going to eliminate the markers. The next test was a contrast enema. It’s about as fun as it sounds. C gets filled up with saline and barium, and then has a series of scans. This was actually fascinating for to watch. Shockingly, he was able to hold 3+ liters of fluid. After they were done, he was supposed to eliminate the contents, and everyone was shocked that he didn’t need to use a bathroom immediately. In fact, I think it was another day or two before he actually went. This test showed us he had a large, stretched out colon, with a comorbid redundant colon (extra loop or bend).

The next test was to be a colonic manometry which is just like the rectal manometry but measures the muscle functionality of the entire colon. The test was scheduled for early March but, the week before the appointment, the hospital called to postpone the procedure due to insurance refusal. So, the hospital pushed the procedure out a few weeks to allow them to negotiate with the insurance company. Unfortunately, that date was also cancelled, this time due to the COVID-19 lockdown. This actually worked out in our favor, because my mother got really sick with pneumonia, and I was able to help with her care, also giving me time to attempt to convince the insurance provider that we actually needed this procedure.

We are now up to May and, in the mail comes the final decision on our insurance appeal. The answer was still no. They highlighted that the requested procedure is investigative in nature and that they don’t cover investigative procedures. So, our doctor has decided that they can get by without the procedure because of how expensive it would be. Amazing!

So, this moves us into the next phase of our effort to help C. He is now on the wait list to have a cecostomy. This surgery will mean that finally, at age 10, C can have daily, regularly scheduled, successful bathroom visits, and never have to wear pull-ups again; allowing him to be a physically normal kid. Yet again, there appears to be a light at the end of the tunnel. Time will tell.

ADHD

“ADHD is the most poorly-named affliction ever. Like ‘Hi, do you have a profound physical inability to accomplish your goals specifically because they’re your goals and also the thought of your friends not liking you makes you want to die? You may have Trouble Sitting Still Disorder.’” Premed with ADHD 

This made me chuckle. It is a confusing diagnosis for sure. It’s very similar to the autism saying: “If you’ve met one person with autism, you’ve met one person with autism.” No two people or diagnoses are alike.

The CDC defines ADHD this way:

“… one of the most common neurodevelopmental disorders of childhood. It is usually first diagnosed in childhood and often lasts into adulthood. Children with ADHD may have trouble paying attention, controlling impulsive behaviors (may act without thinking about what the result will be), or be overly active.”

It’s normal for kids to be easily distracted, restless or impulsive. That doesn’t merit an automatic diagnosis of ADHD. KidsHealth.org points out that ADHD is a medical condition with differences in brain activity and development, making it harder for these kids to sit still and so on.

Hubs and I used to be very opinionated about parenting and conditions like ADHD, feeling like we would know more and do better if we in those parents’ shoes. Maybe those parents just want to drug their kids because they are active… <sigh> We had no clue what we were talking about.

Years later, I’m a parent of two children with medical and psychological diagnoses of ADHD. Both boys struggle, but in different ways, and they are both medicated, but with different medications. Again, no two diagnoses are the same.

ADHD is separated into different categories: Impulsive, Hyperactive, Inattentive, or Combination. (Again, a great definition of these was found on KidsHealth.org) E, was first diagnosed with ADHD when he was 7, prior to his autism diagnosis. His ADHD is a combination: Inattentive/Impulsive with a little Hyperactivity. He struggles to follow multi-step directions, procrastinates, is absent-minded, and often loses track of things (Inattentive). Without his medication he is almost wild. He acts without thinking, is over-emotional in his reactions and, many times, he hits or pushes when playing and may hurt someone but, “wasn’t meaning to”. When he was younger, he was a bit of a risk taker, climbing things and unaware of dangers like being cautious of cars in a parking lot and such (Impulsive). He will also interrupt conversations, tell others how to play their video games, talks excessively, and fidgets constantly (Hyperactivity).

Now C, also diagnosed with ADHD before his autism diagnosis, also has a combination type, but it’s very different, being more Inattentive/Hyperactive with a little Impulsivity. One of the biggest issues we deal with is his constant feeling of boredom. Very few things keep his attention and he wants to be entertained all the time; he seems unable to entertain himself and this is very hard on the family (Inattentive). While he is less on the move now, he was the kid that never stopped moving (Hyperactive). He is still minimally aware of what’s going on around him and often interrupts conversations or is unsafe in parking lots and so on (Impulsive).

So, while each boy has their differences, they both deal with similar issues and have multiple comorbidities. We made the choice medicate them in order to help manage some of the side effects of their brain chemistry differences, to help them be more successful in their lives. In moments of clarity, they used to be so frustrated with themselves, and feel so down on themselves, regretting how they acted earlier, saying that they don’t know why they acted that way, and that they must be bad people. Now, with appropriate medication and therapy, though they still struggle with their issues, they are less intense and easier to deal with, not only for us as parents, but more importantly for them personally. They are not drugged-out zombies who sleep all day or do everything we say. The medication simply takes the intensity off of their ADHD, letting their true personalities shine through. They are much happier with themselves, and the family is, as a whole, too.

Before I became a parent, I had strong opinions but, over many years with many difficult choices, I now have new, more realistic and educated opinions. Choosing to medicate your children is a very tough decision for parents. You doubt yourself. You worry that about doing the right thing. You worry what others might think of your choice. Until, one day, you don’t. At some point, you realize that it doesn’t matter what you did or didn’t choose to do. It doesn’t matter what others think. All that matters is that you do what you feel is best for your own children, whom you know best. You no longer judge other parents for their choices because you realize that they are likely doing their best, just like you are for your kids. Each new day brings new challenges. You learn to think differently and keep going.

“You need to give what’s best in you a chance to grow with the right gardener, one who see that you’re a special plant, not a weed.” – Ned Hallowell

 

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!

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.

So, 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!”

Excoriation

Like many diagnosed with autism, our boys have comorbid diagnoses. One that is on our radar currently is excoriation, a skin picking disorder.

Psychology Today defines it this way:

Also known as excoriation disorder, or compulsive skin picking, dermatillomania is a psychological condition that manifests in the form of repetitive touching, scratching, picking, and digging at one’s own skin. It is an impulse-control disorder and one of several body-focused repetitive behaviors (BFRB) currently classified in the DSM-5 as Obsessive Compulsive and Related Disorders. Dermatillomania affects up to 5 percent of the population and approximately 75% of those are female. The difference between dermatillomania and normal picking at skin imperfections and irregularities, is that the behavior is chronic, results in tissue damage, and causes the individual marked distress and dysfunction.

Repetitive skin picking extends to pulling, scraping, and even biting both healthy and damaged skin from various parts of the body, though most often on the face, hands, fingers, arms, and legs. This behavior, which commonly begins in adolescence but can occur at any age, often results in visible skin damage and disfigurement from lesions, discoloration, open wounds, scars, and infections.

…skin picking can also occur with dermatological conditions, autoimmune disorders, opiate withdrawal, and developmental disorders such as autism.

Unfortunately, E is a skin picker. The sad part is that he is aware he has this issue, hates the fact that he picks, and yet is completely unaware of the action when doing it.

At first, we didn’t think much of it. He had a red spot on his arm here or there, but more recently it is becoming more and more of a visible issue. His arms and, to a lesser extent, his face, are covered in red marks, scratches and scabs. E, thankfully, is not yet self-conscious about his appearance so isn’t worried about how it looks. However, people of the general public see the marks, and doctors unfamiliar with his issues have expressed their concern. Honestly, it looks like he has chicken pox scabs.

Over the years, I’ve learned to ignore strangers’ looks and judgement. What bothers me is that it causes them to worry about him spreading something infectious. I guess it shouldn’t matter, but it does. If I were a parent on the outside, and I walked past a kid, playing at the park or wherever, and saw all those red spots and scabs, I’d wonder if he was sick; if he was contagious. I wish I could just carry a sign wherever he goes that says, “He’s not sick. He’s not abused. He just picks his skin.” Do I need to make him cover his arms even in warm weather to prevent the looks and curiosity? Probably not, but the worry will hover in my mind, especially when I see the judgmental looks.

I worry (and I know he does too) about the potential issues as a result of picking. Abscesses, infection, the needing of a skin graft, or even suicidal thoughts when he gets older. We are working with a psychologist and psychiatrist to help control the picking. On one hand, if it’s a stim, I hate to stifle that, but on the other hand, his health could be at risk. It would be better to adjust his stim to another activity.

One of the ideas we tried was having him wear gloves. That lasted maybe half a day. The gloves bothered him by making his hands too hot; he felt like he couldn’t play on his tablet or hold a pencil properly; all huge issues in an autism household. So, for now, the idea is abandoned, but maybe one day I’ll find just the right pair of gloves. In the meantime, E, his dad and myself all need to be vigilant and redirect him when we see him picking.

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.