My heart is breaking once again for my son

I explained in a previous post that we got some worriesome news today when I picked up the boys from school.

What’s happening is that Gavin’s having Autonomic issues in the mornings at school, after he eats breakfast.  These issues are manifesting themselves as dizziness, sleepiness and an unsteady gait.

image

When I mentioned in the previous post that this made sense to me, this is why. 

The very moment food reaches Gavin’s stomach, his body dumps his blood supply to his digestive system.  He happens to such an extreme that he gets really cold, dizzy and oftentimes falls asleep for hours afterwards. 
Because Gavin’s vascular system lacks the ability to constrict and compensate like yours and mine, he destabilizes. This is a well known thing with him.  Having said that, he’s not had issues with this in a very long time and we had under the notion that he was stabilizing.

Unfortunately, that’s no longer the case, at least right now anyway.

I’m not sure why we weren’t told about this sooner than now.  However, now we know and we’re all on the same page.  That’s what really matters the most.

What I’m finding most disconcerting is Gavin’s reaction to this whole thing.

While in the past he wouldn’t react to things like this, now he panics.  He’s almost become most self-aware, which is something that he’s always struggled with. Now he’s become terrified of going into a crisis and having to go to the hospital.

One of the only blessing that we had in all these health issues is the fact that Gavin was not very self-aware. 
He never really seemed to know that he had very serious health problems. To my knowledge, Gavin has never recognized just how fragile his health actually is. That seems to have changed now and I’m not sure what this is going to mean for him got forward. 

This site is managed almost exclusively from my Samsung Galaxy Note 3. Please forgive any typos as auto-correct HATES me. 😉

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Girl in Sacremento

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Diana S Fair-Dickins

I am sorry your son has to go through this. This is a picture of my son, he is 15.. I took this past Thursday. The top pictures are while I was preparing his lunch, I noticed his face was clearing up, and thought I would snap a shot, thank goodness I did, so I had something to show the doctors.. The bottom pictures were 15 minutes after he finished eating. (approximately 45 minutes later..) Incoherent, angry and in his world of living with his anime characters.. My son is on a strict GFCF and limited protein as his body doesn’t process ammonia appropriately..(We are guessing, from months and months of strict food diaries..As noone can pinpoint the problem..)
Though no child is a like, I understand your heartache.. Our children need to eat.. however food is their enemy.. And we are helpless witnesses.. I am sorry I don’t have answers, but wanted to let you know you aren’t alone, thoughts are with Gavin as well as you and your family..

BeckyRogersWiren

Meaghan1985 BeckyRogersWiren  You probably live a little closer to Ft Wayne. We do have therapy, dr appts and food right in Bryan. Sorry you have to go so far. But getting real help, such as an employment network for jobs, Jacob may have to go to Toledo. We will see. The rural area is pretty and peaceful, but lacks a lot of help.

Meaghan1985

BeckyRogersWiren  I am from NW Ohio too, Van Wert County. I have to drive for half an hour just to attend doctor appointments or therapy sessions, or even to get a gallon of milk for that matter.

BeckyRogersWiren

Rob, I’m sorry. As a loving father you probably suffer as much or more than Gavin over his problems. Sorry he is so upset right now, so sorry he is so sick. I hope you have someone close to help you with your family. I know as a chronically ill mom with disabled sons, that I am often more upset than my sons. I wish we all lived close to give each other even more support. Where I live in NW Ohio is rural, so I have to drive an hour for groups and up until lately, that wasn’t possible. ((HUGS)) God bless you for being the loving, caring empathetic person you are.

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