Friday, June 5, 2015

PTSD and Dizziness -How we recently discovered Mr Boy feels dizzy and how far he has come.

It's a bit ironic that one of my last posts was entitled "Cracking the Code of Fear." I boasted that we were finally figuring Mr Boy out and conquering his fears and need for control stemming from his traumatic/painful medical events which rendered him terrifyingly out of control. But what we learned then, compared to the facts to which we have just become enlightened, pailes in comparion.

In March, David "randomly"met or to put it more accurately, "divinely" met a PTSD therapist at work. They chatted about Mr Boy and Dave mentioned that when Mr Boy gets upset about things, he says they are, "Spinny (like spinning)." She replied, "oh yeah, he feels vertigo." This realization blew our minds. The first thing we did when Dave got home from work was simply ask the kid, "When you say things are 'spinny' is it because you are feeling dizzy?" His answer of "Yes, spinny and dizzy like a carousel," broke my heart.  We had recently been brushing off his "spinny" comments and telling him, "No…. that thing is not spinning. You are fine, it is not hurting you." A flood of apologies and hugs followed.

He never had the language to explain it all to us, and only in the past few months had he been using the term "spinny" so we never put it all together.

After 2 years and LOTS of therapy, medicine and work on our part at painstakingly trying to desensitize Mr Boy to his fears, we finally discovered just how valid those fears truly were. Sure, we always believed that the fears originated from the traumatic medical procedures and that he was grapsing to control all the unpredictable things in his environment (specifically things that blow in the wind or rock, fly or run around), in an effort to feel safe after so many moments being completely out-of-control while having painful things done to him. And on some level this is still accurate, but suddenly a light has been cast over Mr Boy's inner-workings, giving us a better understanding of his 'fears.'

As soon as we found out about the dizziness, we got Mr Boy into mental health therapy as well as Neuropathy, to rule out any inner-ear issues and as expected, he does not have any. The Neuropathist (who is on sabatical but came in specifically just to work with Mr Boy as she is the child expert), explained his dizziness this way: Until the age of 15, our brains and inner ears are still learning to work together to balance us automatically. As children, a lot of the information our brain uses to balance us, comes from what we see or how we see our bodies within the space around us. In Mr Boy's case, because his body is naturally off balance with his shorter leg/smaller foot, and scoliosis, he already has to tilt his head to be balanced and his brain has extra work to do. When Mr Boy would become upset, in a hypersensetive state, his brain would have a hard time processing the information needed to keep him balanced and if a curtain were to blow in the wind (the very first trigger he ever had) or a noise (not sure how it works, but random noises are triggers as well), this would be enough to make his brain think he was also blowing/swaying, and have a hard time balancing. Thus he would feel dizzy and this would increase the terror of the moment.

It would also increase his nausea. When we switched Mr Boy to a blended diet and got him off the formula 2 years ago, his vomiting decreased from 5 times a day to about once a day, but that once-a-day vomiting still persisted. I knew it didn't have anything to do with what he was eating, but everything to do with his emotions. I now feel quite justified in my thinking.                        
Anxiety and dizziness ---> nausea and vomiting.

It all makes so much sense now. It makes sense why he wouldn't let me dance… why he wouldn't let me hold him during his panic attacks (because I rocked back and forth)… or why he would beg for us to stop the curtins from blowing from the air conditioner.  It hurts so much to know that Mr Boy was suffering in this way for 2 years and we were so clueless. There is so much more I could have done or said or comforted, had I known. But in the Lord's redeeming love, He has made it known now, enabling him to find more healing and process all this out with us. It has certainly lifted a burden off all of us. Now Mr Boy is vindicated and we can be much more sensitive to his feelings and needs.

At least once a day Mr Boy will still say, "mom, take off your dangling earrings, they are spinny," but he has recently clarified that statement slightly with, "I think they will make me feel dizzy." And there is no more fear in his voice when saying it because he knows I am fully supportive. Before, I would say, "You are ok, they are fine, they won't hurt you." But that wasn't the point and I didn't understand.  He didn't have the language to defend himself. But now he doesn't have to.

Since having this new knowledge, I have personally only seen him feel dizzy (and it was obviously terrifying) twice and it was when he was in a very emotional state. All his other daily worries are because he remembers the dizzy feeling, knows the things that triggered his dizziness in the past, and is afraid those items will make him feel dizzy once more.

With advice from the therapists, we are helping him work through this by talking it out which helps immensely. When neccessary, we give him firm pressure on his sholders with our hands and plant his feet firmly on the ground to give his brain extra physical input to know he's not spinning.  And we give him a safe place to go if he is nervous. His room is his safe spot. For instance when Skittle's baby toys make noise as she randomly hits them, he sometimes doesn't like it and thinks it might make him feel dizzy. But we don't want to ban Skittle from playing with musical toys, so Mr Boy excuses himself to go lay down on his bed until he feels better and can come back and play. Last week he started going into the pantry as a safe place as well.  But we already rarely need to utilize these techniques. He has matured so fast it's crazy. And then he runs around pretending to fart on me and I remember he's a kid. :)

Mr Boy has made so many incredible leaps and bounds in conquering the fear of his past triggers since we have known about the dizziness and become more supportive.

One HUGE blessing in all this has been Mr Boy's decreased vomiting. He vomits maybe twice a month since we have learned all this. That was 5-10 times a day for this first 2 years of his life, then 1-3 times a day for 2 years and now virtually no throwing up at all. He is so happy and content with life and his surroundings that his anxiety is almost non-existent and thus his vomiting is almost non-existent.

After only 3 visits, Mr Boy's mental health therapist actually told us we didnt need to keep coming. And after only 2 visits, the Neuropathist told us we only need to see them twice a year to check-in.  Mr Boy has almost no negative affects from his trauma that would be treatable in therapy. They said therapy can only do so much and all the tools they would teach us to help Mr Boy on a daily basis at home, we are already employing.  I guess I needed the therapy process so see how great he's been doing! One year ago today I would never have dreamed of such a blog post. But for the past few months Mr Boy has come a long way toward complete PTSD healing. We continue to pray that there is no recurrence of issues later on in life, but will be poised to take them head-on with this new knowledge and with an army of prayer warriors behind him. Praise the Lord!

Through processing this all out with Mr Boy, he has begun to bravely go where he has not ventured before and play with things which were dizzying triggers in the past. All these new things in the past few months: 

He now bathes every day!!! And last week I was allowed to add bubbles! Huge steps!!
Water has been such a HUGE obstacle his entire life and now he's a tadpole.

In our kiddie pool in the backyard. We had this pool 2 years and he is finally happy to get in it!

 In physical therapy 3 weeks ago, I mentioned to his PT that the only thing Mr Boy still would not do, is swing. He just knew it would make him feel dizzy so he refused. His PT took that as a challenge and asked Mr Boy to hop on this swing. Mr Boy was scared and tense, but agreed to get on as long as he didn't move it too much. After a few minutes, Mr Boy said, "Hey! I don't feel dizzy! I want to go faster! Mom, I want ride a swing everyday!" 

On our way out of therapy that day, the PT also got Mr Boy to try out a tire swing, the epitome of dizziness. Mr Boy said, "I feel a little dizzy, but the good kind of dizzy." Amazing!

So naturally, the first thing we did was go to a park and swing!

I could go on and on and on and on about all the new things he is able to do and all the triggers which have been rendered harmless. The simple fact that he went to Disney world and enjoyed it with no fears, is a true testament to how far he has come. Even today, Mr Boy told me we should go to his playroom and put all the batteries back into his noisy toys, and we had a dance party!

We always thought Mr Boy was just going to be the very anxious one in the family, and carry on the tradition of scaredy cats in our family line (me included), but this is not the case. He is the most courageous boy I have ever met and will always be my inspiration. The Lord bessed him with bravery, at which I can only marvel. We could not be more thankful to the Lord for his mercies. It feels like we literally got our son back.


  1. Crying like a baby, as always. Your.posts! God is sooooo good!!! Thank you for sharing.

  2. I just discovered your blog, my daughter was born with cloacal exstrophy in 2013 and she sounds very similar to Asher, especially with the vomiting. Thank you for your insight! My email is if you ever wanted to chat with a fellow exstrophy mom, although I'm afraid I'd learn more from you:)