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.


Image Source
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.    

8 comments:

Kate Policani said...

I'm so glad you could find a solution to your weird problems even if you didn't pinpoint the cause! We are no stranger to weird rashes in this family. I'll keep you in my prayers!

Caffeinated Autism Mom said...

Thanks, sweetie. I sincerely appreciate that.

Shell said...

I'm cringing at the 10 vials of blood!

You are so right- things could always be worse. Even though whatever we may go through seems hard in and of itself, in the bigger picture: it's really not all that bad. Though this is something I have to continually remind myself when I'm in the middle of it!

Judith said...

So sorry that your world got so scary. Glad it has calmed down(relatively). Please don't take this wrong, but it made me feel better that it wasn't just happening to me. :/ Hope for you all that it's really over and NEVER resurfaces!

Where does one find activated charcoal?

Judith said...

OMGosh - forgot to say that I loved your reference to House! I miss that show! :)

James said...

Hi – Will you please post a link to your important Blog at The Autism Community at vorts.com? Our members will really appreciate it.
Members include: Those living with Autism, parents of children with autism, their families, friends, support groups, etc.
It's easy to do, just cut and paste the link and it automatically links back to your website. You can also add Articles, News, Photos, and Videos if you like.
Email me if you need any help or would like me to do it for you. I hope you consider sharing with us.
The Autism Community: http://www.vorts.com/autism/
Thanks,
James Kaufman, Editor

Mama said...

Hi,

coffee addicted mum of 2 autistic boys... reading your profile made me think of me :)

Tami, mom of a PANS kid, in WA said...

Howdy, Tachycardia can happen due to PANDAS- (autoimmune version of strep gone wild), and PANS (same kind of thing, but caused by H1N1, mycoplasma, lyme, etc). You might want to mosey on over to PANDASNetwork.org for a list of other symptoms, including possible tests. PANDAS/PANS kids have lots of sensory issues, mood disorders, and weird symptoms. Mitochondrial issues can cause tachycardia and "POTS". (Might want to look up dysautonomia-while you are at it.)

Related Posts Plugin for WordPress, Blogger...