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Medical Historian

Ronan and willemBy Cathy Jameson

About 3 weeks ago, Ronan’s little brother told me that he was having headaches while reading.  Willem has been in glasses before.  But that was back in 2nd and 3rd grade.  He’s passed eye exams since then, but it was important for me to get him back to the eye doctor.  I thought we may be revisiting his need for corrective lenses.  I was right.    

For Willem, it was a quick fix.  For his big brother Ronan’s medical issues, many of which began post-vaccination, it’s been a complicated, trying, expensive, disheartening, and sometimes overwhelming process to get doctors to listen to us and to help us.  I’m prepping for a slew of follow-up appointments for Ronan right now.  Part of me is ready – I get to fight for Ronan! But the other part of me is dreading them – it’s work to do this, hard work! 

With how many of his systems are affected, and with how many people it takes to oversee his medical care, I end up doing a lot of studying as I get ready to talk about Ronan’s health.  I told a dear friend in a phone call last week that whenever I prep for these every 4- to 6-month appointments, I feel like I’m getting ready to take a final exam.  Before I sit down and catch everyone up on what’s worked, what hasn’t, and also share what I’d like to see changed, I have a lot of reading and organizing to do.  Right now, I’m reviewing recent lab test, therapy notes, Ronan’s seizure calendar, and other pertinent information that I believe is helpful to share.  I’ll meet with the doctor’s individually, but some of what one doctor shared last time may need to be relayed to another doctor this time.  Thankfully, some of Ronan’s team already communicates well with each other, but I don’t mind being the matchmaker for those who haven’t caught on that some of the medical problems we’re trying to tackle are related. 

Since Ronan can’t chime in at his appointments like his siblings can, I make lots of notes.  I won’t share everything that I write down, but I have found that mentioning things in date order, and including events that happened both before and after an episode we’ve been concerned about, helps.  Four months ago, we noted …a change in behavior, sleep pattern, decreased ability to complete an already achieved milestone.  Right before that time, we saw these changes … his appetite, his sleeping schedule, his behaviorThen, 2 weeks later we saw a rash of seizures right before …a fever, a change in the season, an increase in aggressive behavior…  

Willem must have picked up on that method because the other day, when it was his turn share some medical history and tell the eye doctor what was going on, I listened to him advocate for himself – “Yeah, it kinda hurts.  It was a few weeks ago that I noticed it.  Sometimes it started to bother me right here on my head at school.  But most of the time now, I feel it after school at home when I’m reading a lot.  When it’s bad, I have to put my stuff down, close my eyes, and sometimes rest my head to make the ache go away.”  He looked at me and waited.  I looked at him, gave him a thumbs up, and beamed.  He spoke clearly, confidently and gave just the right details.  I was so proud of him for being able to do that! 

After he offered personal insight into the type of pain and problems he was having, I interjected with more information about Willem’s past eye issues.  I also mentioned some of his brother’s medical problems, namely that he had mitochondrial dysfunction.  I felt it was important to share that because we’ve been warned that Ronan may have severe vision issues later in life to include loss of sight.  I told the doctor that I wasn’t worried that Willem’s health would follow suit, “…but since the boys are related, well, I feel it necessary that you know a little bit about his brother and about his medical issues.”  She nodded her head, jotted down some notes, and said, “Someone has to be the historian.”  I smiled and agreed.  

I didn’t share our full family history during that visit, but past history shows that I made some poor medical choices for my children.  I didn’t know then what I do now.  I didn’t know then what I should have either.  I never want to repeat that ignorance.  That’s why I’m driven to be present with Ronan now.  I do that even though my efforts to engage with him are not always reciprocal.  They aren’t reciprocal with the siblings either.  They may never be, but we’re not going to give up on hoping for something better for Ronan’s future. 

I’m not the best at planning for the future completely, but I know that some of what Ronan’s going through right now isn’t working.  I see that.  Willem and the other siblings see that as well.  We want a change, and we want it to happen sooner than later.  So, before I head out to the next few appointments Ronan has, you’ll find me reading the seizure calendar we keep and cross referencing it to changes in behavior, the weather, the moon cycle, and recent illnesses.  I’ll be reviewing the protocols were using and brainstorming alternative ones to try instead.  I’ll be looking up and printing off information that friends, as well as several AofA readers, have asked me to check out.  I’ll be pulling up the color-coded Excel spreadsheet I have that lists past medical events and lists interventions we’ve tried.  If I have time, I’ll finish the 2 books I’m reading now, too.  One is about autism and the other is about genes.  Neither book is what a typical mom may see as a “reading for pleasure” sort of book, but I find joy in books that help me learn and understand more about what’s happened to my child.  I find even more joy in the potential to positively change the course of my child’s future because of the simple knowledge I gain from reading a book. 

If I’ve learned anything about being the parent of a special needs child, it’s that you never stop learning.  What worked last month may not work next month.  What used to be helpful before is an irritant now.  Special needs parents never stop learning.  That holds true to typical parents also.  Parents have to know everything!  They may never use all the information that they’ve gathered in one sitting, but it’s always good to keep learning – including learning from the past. 

To be cognizant of what happened in the past, to be aware of what’s going on in the present, to decide how I want things to be in the future, as long as history doesn’t repeat itself, we have a chance.  Ronan has a chance!  Reading, organizing, preparing, and keeping track of everything I need to takes a lot of work.  I have to remember so much.  For these upcoming appointments, I’ll carefully prep and quietly pray about what I need to say because what I say and how I present the latest progress and problems we’re having can make a big difference.  With as many providers we’re about to visit, I have a chance to make Ronan’s tomorrow a little bit better than today.  Out of everything I’m doing, that’s the most important thing I need to remember. 

Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

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Jeannette Bishop

I've heard that close-up work is suspected as playing a role in developing myopia (don't know if that applies to Willem's situation), but I did a lot of close up work pretty young (mostly reading, music rehearsing, some computer use) and was probably misled when told that I should wear my near-sightedness correcting glasses while I was reading. I think that maybe I should have been told the opposite and to break up my reading into smaller segments, 15-20 minutes max and give my eyes breaks with ideally something much different in distance to focus on (...maybe, since I didn't do this until my vision was pretty poor...I can't say from good experience. I have had one period where my extreme myopia improved subtly when I put some energy into focusing further in the distance more frequently and not reading with my glasses, which I had found pretty uncomfortable as a pre-teen, young woman).

Anyway, I noticed after having to get new prescriptions for glasses every time I went in to an optometrist that the wonderful corrected vision I had with a new pair would last less than 2 weeks and move functionally in just that time to where it was right before I got the new pair, a little blurry but functional in terms of far-sighted vision and essentially stay that way for months. I decided it was most likely the act of getting corrected glasses over and over that worsened my not-so-bad-at-first (if not great) eyesight and led ultimately to pretty severe myopia (where without glasses I can't now read the computer monitor or piano music--especially completely new music--without leaning in too close to function well with both types of keyboards, and I can't wear my glasses for other health reasons so I lean in and squint all the time), the eventual selling of contact lenses and accompanying exposure to thimerosal in the late 1980s, developing an allergy to thimerosal, and my own eye proteins in the name of "slowing" my eyes from changing shape which maybe marginally slowed things, but I only had one appointment where they said to use the same prescription. I also developed some astigmatism somewhere along the way that they can't quite fix with glasses (LOL, a straight parting of my hair looks crooked in different ways with or without glasses).

Though I'm not sure what started the process...my current speculative query, reinvigorated by Forrest Maready's theories of cranial nerve palsies and facial asymmetry, is how much credit do medicinal/dental metals deserve for vision difficulties? (Sorry, another long post.)

Cathy Jameson

Thanks again for the comments. I'm happy to share where we are in the hopes that our story can help someone else. I always appreciate the encouragement from readers near and far - thank you! Peggy, Willem's optic nerve looked perfect, so I breathed a big sigh of relief over that. He was prescribed glasses for reading, but now I’m wondering if what Tim has suggested will help him (and me - I also wear corrective lenses) instead. I’ve never heard of Rehm’s work. It’s such a learning process! I’ll be checking out the book he suggested and will look at that dietary/supplementation, too. I’ll do that to educate myself and to see if there are other (better) options for us. xo, Cat

annie

Thanks to the benevolent brilliance of the great Cathy Jameson, and Shelia Lewis Ealy, and Ginger Taylor, and the LATE GREAT MARIANNE GODBOLDO, and Polly Tommey, and Kim Rossi, and Jenny McCarthy, i don't have to figure out how to keep my kid alive. i don't have to figure out how to bridge the divide between allopathic and natruopathic. Someone did that for me. Someone for whom i am forever grateful.

i am forever gratefully humbled.

Tim Lundeen

@Cathy you might check out Rehm's work on vision and treatment, it seems sound to me and doesn't involve wearing glasses the rest of one's life.

https://www.amazon.com/gp/product/096084760X/ref=oh_aui_search_detailpage?ie=UTF8&psc=1

There are also a sunlight and nutritional components. Getting natural full-spectrum sunlight has been shown to be protective and restorative. You could also check his Vit D levels, make sure his K2 intake is at a good level, and that Vit A intake is not too high. Also check that he isn't taking any supplements or eating any food that contain retinyl palmitate, as that could cause problems all by itself.

MamaBear

"I’m not the best at planning for the future completely" ...

No you're not. But oh sweet girl, I love your attitude to try your best now for that unknown future. The best tool in your bag? The enormous love you and your family have for Ronan. God bless you always.

go Trump

Thanks Cathy,

However, I would somewhat doubt you have made very many “poor medical choices for your children.”

The medical professionals that have been trusted with the care of our children have been bought off for decades and harming children is now simply a part of the their business model supported by the CDC and those who make ungodly amounts of money from the process.

Most of what little is known to help our children comes from the endless medical study by the parents.

Peggy Jaeger

And tho I'm intensly interested in Ronan and his 'history', since this started out about his brother Willem, I'd like to know how this doctor responded and what was the report on Willem...?? As a matter of history and as a matter that may be related to the sibling of our Autistic grandson. Thank you Kathy for sharing details...all So needed by caregivers new to this path and valuable to those fellow travelers now.

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