Wednesday, September 26, 2012

It could always be worse!

This is what I told myself in the midst of doctor-visits-and-medical-mystery-a-palooza over the summer.  

It could always be worse!

Everything seemed to go cuckoo with the boys’ health toward the end of the summer. Nothing was clear cut about their situation, and no one seemed to know what was going on.   
The boys both had weird skin lesions that developed a few days after coming back from a camping trip. We did everything humanly possible to figure out what could be going on. Was it contact allergies? Were they bug bites? Was it some other condition? We had no idea and neither did the doctors. And after several days, when Monkey seemed to be getting better, Prince Charming was much worse and literally swelling before our eyes.

No one could tell us what was going on. The pediatrician didn’t know. The doctors at a second clinic didn’t know, even after 3 hours of them talking, researching and conferring with other doctors in the practice. No one knew.
Even after 10 (yes, TEN!) vials of blood taken between the boys for tons of tests, no one knew. (Getting the blood draw is a whole other story that requires consumption of a stiff drink – or several – before I am able to speak about it…)

The skin issue remains a mystery to this day, but thankfully the rashes are now gone. After about a week of not knowing what to do, making lots of phone calls, visiting various doctors, and doing endless research on the internet, I figured out a simple cure without any help from the doctors.
The secret is activated charcoal! I stuck a little pile of charcoal on top of the lesions and covered them with a bandage overnight. By morning my swollen Prince Charming was much less puffy. It was a messy miracle that took about 2 days, cost all of 3 bucks, didn’t hurt, and didn’t have any side effects. I wish I had figured it out sooner!

In and among the mystery skin issue, we were also dealing with some additional symptoms and concerns in Monkey. Cardiac symptoms.
Yes, you heard that right. In particular, tachycardia. If you are not sure what tachycardia is, it’s when the heart rate becomes accelerated for no apparent reason.  

You could have knocked me over with a feather when we figured out he was having heart issues. It was so unexpected.
When it first started happening, we thought it might have been an upset stomach, possible cold/flu, or even food poisoning. I was starting to feel like I was on Dr. House’s team with all of the research and differential diagnosis I was attempting.

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Each time Monkey would get his strange symptoms he seemed to recover quickly (within minutes or hours). There was only one time that his symptoms lasted for more than a day. He never developed any other symptoms of illness. It seemed strange that he apparently kept coming down with something but then the sickness never materialized. We knew something was up.
It was by accident that I figured out his heart was racing. From that point forward, we began documenting all of his symptoms and even found an app for our smart phones that would monitor heart rate. Then we got in to see a pediatric cardiologist.

Never in my wildest dreams did I expect one of my children to have a need for a cardiologist!
She sent us home with a portable heart monitor that we used to record any incidences as they occurred. Monkey was still being monitored when school started, so then I had to have a long discussion with the school nurse and his teacher to go over the details of the heart monitor in case he had tachycardia at school. What fun.     

After all of that, and a couple of visits to the naturopath, we still have a lot of questions about the boys’ health issues over the summer. We don’t know exactly what happened with either of them. We don’t know if the skin issues were related to the cardiac issues. We don’t know if any of the symptoms will come back.
The cardiac symptoms began going away once I started on a supplement protocol given to us by our naturopath to help Monkey’s immune system, focusing heavily on natural anti-virals. I did that for two weeks and as a result he stopped having his cardiac episodes.

We had a follow up appointment with the pediatric cardiologist to go over the heart monitor results. I reported the information about the naturopath’s treatment protocol and how the episodes tapered off and then stopped. Much to my surprise, she told me that since the naturopath’s protocol seemed to work, I should immediately begin doing it again in the future should Monkey’s episodes return.
What? A mainstream medicine person agreed with my naturopath and that natural methods worked and should be used again? I was happily shocked. Usually, information like this is met with disdain in the traditional medical community.

In our first visit with the cardiologist, she said there was a chance that his heart symptoms were being caused by some kind of virus. We were never able to pinpoint an exact virus from the myriad of tests run with the blood draws. So, she felt that success of the anti-viral supplements through our naturopath proved that Monkey’s heart issue was definitely being caused by some unknown virus. And, it could happen again. So, I will keep anti-viral supplements on hand for such an occasion.
All of this is to say, that during this time of health uncertainty, I really felt the stress of not knowing what was wrong and feeling helpless to fix it. Keeping that in mind, I know that it can always be worse.

Someone else always has a worse situation than you.
I better understood that I should not take my boys’ good health for granted. They have come a LONG way in their journey with autism and are much healthier than they were when they were younger! We have made a lot of changes, including the GFCF diet and proper supplementation. My boys are better because of it. I recognize that my life is much different now than it otherwise would have been had things not changed and I hadn’t been open to visiting a naturopath and doing other sorts of non-traditional treatments.  

During this time of concern over the summer, I really began to think of everyone I know that has dealt with things far worse than I can even imagine as a parent. I have friends who have children with Down syndrome that have dealt with multiple heart surgeries in their babies. I have another friend who had a child born with a significant heart defect, and right after her baby had a procedure to essentially re-build his heart, their apartment burned down and they lost everything while their son was recovering in the hospital. I have friends who have children with autism that cannot speak and still wear diapers at ages 8, 10, or even 16.
I can think of tons of examples of families that have a different experience with their child, and in my mind and my own experience it seems almost too difficult to imagine. What I’ve dealt with in my own boys is much more challenging than many of my friends have had with their children. But, we all deal with the cards we are dealt.  

We all have different experiences, challenges and triumphs. All we can do is try to do the very best we can in each moment of crisis or moment of joy. The boys’ health scares over the summer really brought that into focus for me.
I am so thankful for everything with my boys. Even though things have been hard in many ways, they’ve also been so wonderful in others. I am grateful for the path we are on, despite the twists, turns and brick walls along the way. I am also keenly aware that it could always be worse, and I’m exceedingly glad that today is a better day.    

Monday, September 10, 2012

The saving grace of going back to school

When summer draws to a close and school starts again, I think what many of you do:

It’s the most wonderful time of the year!

I crack up whenever I see this video!

How did your summer go? Did you survive? Did your children survive?
We did okay. Not great. Not horrible. Just okay. Prince Charming lost his ESY (extended school year) services. Monkey somehow managed to keep his ESY, although they cut his hours in half. I’m sorry, but 12 hours over an entire summer isn’t super helpful. Whatever. That’s another conservation for another day… We happen to love our ESY teachers, and something is better than nothing.

Last spring I found a local Groupon-type deal for a beginner’s karate class and thought it would be a perfect summer activity. It would be a good, healthy, and inexpensive way to add a routine to our summer schedule. At the beginning of summer Prince Charming was dying to go and Monkey would launch into tears at the mere mention of it. My how things changed once they started going to the class! Monkey enjoyed himself immensely and managed to earn his white belt. Prince Charming refused to participate and would launch into a meltdown at the drop of a hat. And, that’s one more conversation for another day…   
Despite summer preparations including a newly defined reward schedule, a list of expected behaviors, and lists/charts around the house for regular routines, the break from school was not easy. It never is. I did my best to set things and prepare so that the summer would be simple and straightforward, but life has a way of changing things up sometimes.  

In fact, we saw some significant regression over the summer with Prince Charming. The words, “I told you so” (directed to the school district in regard to their removal of services) come to mind. His sensory system became quite a bit more reactive, and I found myself needing to equip him with a sensory toolkit just to leave the house each day. We haven’t had to do things to that level in a quite some time and it was disheartening to see him react so easily and quickly escalate into meltdowns.
The boys also found their brotherly voices over the summer break. And by brotherly voices, I refer to their constant bickering, yelling, screaming, fighting, kicking, and general disdain toward one another. The silver lining to that cloud is that it is all very neurotypical behavior, so I had to remind myself of that as I could feel my head wanting to explode repeatedly.

As summer wore on, there was a general shortening of my fuse. At times I possess a large amount of patience; other times, well…not so much. I have been told by parents and professionals on various occasions that they are impressed with my patience and calm demeanor around my kids when they are acting up. I am no saint, that’s for sure.
I found myself getting irritated more quickly and the general noise level began to really bother me. My house has never been a quiet place, but during the summer ear plugs should be standard issue.

Needless to say, my nonprofit work and blog writing came to a grinding halt. You may have noticed I was almost completely absent here on Caffeinated Autism Mom during the summer months. Now you know why. I can’t write or work in a chaotic environment. My brain doesn’t function that way. I can only filter so much and then at a certain point I just can’t do anything productive.
During the summer I actually had my first migraine in years, and there were also a couple of multiple-day headaches thrown in there for good measure. At a certain point I became ugly mommy with a bad attitude that could raise her voice at the drop of a hat. I’m not proud of that. It’s not a shining moment for me at all.

I hadn’t truly realized how much my attitude had changed until one day things were particularly rough. The boys were bound and determined to fight like cats and dogs and I had simply had it. I was DONE. And, I yelled. Loudly. In no uncertain terms, I laid down the law and separated them. Since they obviously couldn’t be near each other without having a problem, I took away that choice for the afternoon.
Later that day in a quiet moment when peace had been mostly restored, Prince Charming came to sit with me and said that he was looking forward to school so that I wouldn’t be mad anymore.

Knife to the heart.
Within the same hour, Monkey told me that I needed a break. He then told me that when he and Prince Charming started back to school again he thought I would be happier. That effectively twisted the knife.

I felt as small as a gnat.
I took each of the boys aside and apologized for my behavior. I talked with them about why I was having a hard time and what they could do to help so that we could all be happier.

School started the next day. I did not do a celebratory dance or take a nap or eat a bucket full of chocolate. I felt sad. I was relieved for the quiet, but I was sad that our summer ended the way it did. I can’t fix it or make it better. I can only try to do better next time.     
I will tell you that I noticed an immediate shift in my demeanor. When the boys got home from school, I was eager to talk with them about their day. I was 100% clued in, sharing the moment with them and truly happy to hear all that they had to say. I could feel my blood pressure lower and my jaw un-clench. My joy had returned, and it only took one day with a 4-hour break from the boys to do it.

It really is the most wonderful time of the year.   

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