Sunday, September 4, 2016

Horrible Pain for my boy with Autism

Warning:  Some of you may know what I’m talking about right away, others may not.  If you haven’t experienced the horrible pain some kids with autism may go through, this post may be more than you can handle.  Heck, I can barely handle it myself; but here it goes.

Guess which one is Dante, at one week old.  
Dante has lived with pain for as long as I can remember.  I call it pain but I really don’t know what ‘it’ is.  What I do know is that he cries real tears, he hits or slaps his head, or tries to bang his head against anything hard, he thrashes on the floor or against his bed and it is very hard to control him.  He seems to be in an agony that he only wants to exacerbate with more agony.  I’m sure some of you know exactly what I am talking about.

I first started describing it as ‘fussy’ in my notebook, dating back to the month he was born.  I took daily notes of his habits:  when he slept, breastfed, had formula, was fussy, or pooped. Soon enough the pattern emerged that I would write down ‘fussy’ – and this fussy period would last until he did ‘caca’ (poop, BM). 

My notes for 1-month-old Dante
And hence our obsession with poop began.

Notes, at 4 years old
I don’t intend to re-tell everything we have tried to help stabilize Dante so that he doesn’t go through these fussy, eventually-to-turn-into horrible pain periods.  Our story is already detailed in my earlier posts.   What I would like to say is that these symptoms are at the core of his issues and that healing them helps Dante become more fully the young man he is.

The irony of healing has hit me so many times during this child’s lifetime.  I’m sure you may have seen in your kids that, as you make changes to help them heal they only succumb to more periods of pain, or even seizures like in our case, before you can claim a mere ounce of progress.  And so I have taken notes since he was born and transferred the highlights to monthly calendars so that I may assess how he is changing overall, and what patterns emerge from what we have been doing.  And eventually I learned about the moon cycle, and added the different ‘moon days’ to the calendar.

I then noticed how, around different moons, his symptoms would get worse.  This pattern would change after a few months, but when I went back to previous months or years, the pattern was definitely there.  Horrible pain on the days surrounding the New Moon, for example.  Horrible pain around the moon that happened to be on Christmas day, and Thanksgiving, and my birthday.  Not only did this happen in 2015, I noticed, but exactly a year before – same exact symptoms at exactly these special dates in 2014.  Sadly my parents were visiting on two of those occasions, both during my birthday, when the day turned into a huge crisis with both of Dante’s parents arguing whether or not we should take the boy to the hospital.

The point is, the pain is cyclical.  So I can at least look back on my calendars and try to figure out when to expect it to happen.  The last time I spoke to his pediatrician about this, he said it reminded him of IBS (Irritable Bowel Syndrome).  If you google IBS, it does mention that it is cyclical as well.  My husband, who suffers from IBS, also stated that the Dante’s pain reminded him of it.  Something else the pediatrician told me is that the drugs used for IBS are too strong and not suitable for children.

And so it is that I began to list what things seemed to help, and keep a post-it visible in case the thrashing began:  ibuprofen, Burbur, a bath, food, activated charcoal, an enema.  Each of these solutions discovered through the different protocols we have tried, all imperfect.  Baths have always been the most effective for Dante, but none of these prevent the pain from starting in the first place. 

Sometimes the episodes come frequently throughout the day, sometimes they are short, sometimes they last up to a half hour. Often, the pain episodes are offset by very hyperactive periods – so he goes from frantically happy and unstoppable to thrashing in pain.    Sadly, the only thing that seems to stop these pain/hyper periods is, well, a seizure cluster.    It’s hard to say which of all these I prefer.

Through the years I have felt so alone dealing with this because, it seems, everyone else’s kid with autism doesn’t seem to experience this horrible pain.  With every protocol I try I vent my frustration with other parents but I hardly hear a peep about this situation.  Some time back I took Dante to school one day, to his old school which specializes in kids with all sorts of medical issues.  In the middle of the hallway we encountered a young man who was being helped to his room and whose hands were covered with bandages, almost like boxer gloves.  Someone explained to me how the bandages were the only way they could keep him from harming himself.  I can still recall the deep sorrow I felt, realizing that yes, there are other kids in horrible pain, and they are harming themselves day in, day out.

So this topic has been brewing inside me for a long time.  I’m sure there are other families also suffering with this.  I remember one family in particular whose older son had become more and more violent as he got older.  The mother presented how they dealt with the situation at the AutismOne conference in 2016.  I don’t know if that violence comes from pain or discomfort, but I wouldn’t doubt it.  Because Dante responds so strongly to all the healing protocols we have tried, this last time I chose to try what seems like a gentler approach, with the hope that it would help with the horrible pain.

I read the book Medical Medium, by Anthony William, and began to re-assess Dante’s diet yet again.  After being on a Ketogenic diet for years, seizures were now somewhat controlled with CBD oil but the problem with constipation continued.  Since I had the CBD oil supporting him, I decided that re-instating fruit in his diet may actually be okay.   This follows Anthony William’s guidance on the importance of glucose for the brain.  He states that our kids need glucose to form connections in the brain.  So from eating no fruit at all, we went to a fruit smoothie once a day, along with a celery-cucumber-apple juice to start the morning, and additional fruits as snacks during the day.  Dante started to poop several times a day.  He has also been in a consistently better mood since then. 

The book recommends a series of supplements for children with autism.  Because I wanted more specific guidance for Dante’s needs, I set up an appointment with Dr. Nicole Galante, who is dedicated to this healing protocol.  I told her I needed to implement what was most important for Dante, and not a million things that I would not be able to keep up.  So the additional things we implemented at the start of July 2016 were:
  • ·        Reduction of meats and fish, use more sweet potato, coconut oil, and avocado
  • ·        B12 vitamin
  • ·        Zinc
  • ·        Spirulina
  • ·        Barley Grass
  • ·        Dulse
  • ·        Ambaya Gold Detox & Renew
  • ·        Ambaya Gold Super Ionic Conductive Minerals

What followed were six weeks of a very stable, happy and pain-free child with minimal seizures.  I especially loved that he had no detox symptoms at all from these changes, so we only got the positives.

Dante, at the start of this school year
A huge test for these changes was the New Moon week in early August.  He had really bad pain during the New Moon before the changes, and we noticed considerably less pain after we implemented these changes. 

One last recommendation from Dr. Galante that I had not implemented was: 

So when the New Moon period started again last week, and I started seeing Dante in some pain, I decided to buy the tea.  I prepared a cup for him and cooled it down with ice.  Every day I gave him the tea he would have a much better day the next day, minimal and totally manageable short pain periods.  But the cherry on top, the best part of it, is that my son was able to focus and study during the week.  Continued focus and being “on” has always been a challenge for him, especially when anything potentially ‘healing’ is going on.  I think the tea really helped him focus, as he was answering most of my questions correctly as we studied the different types of rocks.
At this point in time I am sure I don’t have all of the answers.  I am also sure there are things that help our children heal in such a way as these periods of horrible pain may be minimized.  Some children tolerate some approaches better than others.  I’m sure that a clean healthy diet that promotes appropriate detoxing (poop!) must definitely help.  The additional supplements mentioned above are supposed to help detoxify heavy metals naturally and heal the nervous system.  Per what I’ve been reading, this ‘pain’ stems from a very sensitive nervous system that reacts to the pull of the lunar periods.  The more our kids heal, the less sensitive they will be to these variations.

As I said, I’ve been thinking about this topic for a very long time.  This post is just to summarize what seems to be helping Dante at this point in time.  I hope to be able to offer more detail and more progress in the near future. 

Thank you for reading and may God guide and bless your healing journey.


Gabrielle Olko said...

Thank you for this beautiful article. I am a 33 year old woman. And I know my case is not the same at all, but there are traces of what you have posted that give me hope. I got in a moped accident 3 years ago and from accident they scanned my head to make sure there was no injury and happened to find a brain tumor. I had never had a symptom. I ended up doing a biopsy to discover what type it was. And even though it was in an unremovable spot, I was convinced having them surgically go in and do a biopsy was a good idea. NOT SO MUCH. Since the brain trauma of the biopsy I have suffered from seizures and many other things. Luckily there is no growth of the tumor, but the seizures have gotten more intense and more frequent. I started to notate when I felt the most pain (headaches/sinus issues) and more frequent seizures and it seems its either around the new moon or full moon. So in relation to you article I found that interesting that things come in cyclical waves. I will have a break from this pan and seizures and then it will comes back. I have tried many things over the years, who knows if they help or not. I just got back on the ketogenic diet. I thought the idea of fruit once a day was interesting so perhaps I will explore that. Anyways thank you!

Rethink Captivity said...

Thank you so much for posting such a thorough and well documented post. I am a pediatric SLP, but have a slew of my own health issues which lead me to the Medical Medium and Anthony as well! I have many clients that I think would really benefit, but struggle with professional boundaries. As an SLP with a vast knowledge of nutrition, but no certification, I question how much I should get into nutrition, but to me it is a huge piece of the puzzle. I am saving this post as a reference for families who may be interested in looking into the MM protocols.

Anonymous said...

You are an amazing Mom! Don't forget that. Nice writing job as well. I hope your son continues to heal and with you on the task I have no doubt!

Mom Connected said...

Thank you for sharing your story with me, Gabrielle. I really feel for what you've gone through. I don't wish seizures for anyone. The CBD oil has been a blessing for Dante, so much better than meds any day, but there are some tricks to it. I would like to write about that soon. I'm delighted to hear your tumor is not growing and wish you the best!

Mom Connected said...

Oh, Shana, I so relate to your predicament! That's a tricky thing to do. I think having them "look into" something that "seems to be working" for some kids you know of? I mean, from all my years at this I will say that diet is the one thing the vast majority of kids respond to. Sometimes parents report no impact but IMO that may still be because their diet still has some hidden no-nos. Diet is huge, and very tricky because there are a lot of contradictions out there. Good luck with your health and hope to hear from you again!

Mom Connected said...

Thank you so much for your kindness and wishes! 🙏🏼