Nothing EVER goes as planned, ever

I had a 45 minute discussion with Gavin’s teachers this morning to make sure we were all on the same page.  Gavin is continuing to decompensate and I needed to update them on the seizures,  medications and what is currently going on. 

Basically,  Gavin getting sick after breakfast at school.  By sick I mean nauseous.   I know what he’s eating and it shouldn’t be a problem.

We aren’t seeing this as much at home but that could be because he doesn’t complaints to us.  I watched today as he ate. Breakfast and became so tired that he literally couldn’t stay awake.  As he went to throw his trash away,  I saw him walk into the wall at least twice and then drop nearly everything he was carrying.

Something is not right and we need to finally get to the bottom of this.

We basically,  called the doctor this morning and he is now waiting to be seen.  Something has to give.  We have to figure out what’s going on with him and fixed it.  He’s already been tested for issues with food and nothing was ever found. His meds have been the same for a long time now,  with the exception of the Depacote,  but he was on that before and he was fine.

His blood work always comes back clear.  We’ll see thing like anemia but that’s quickly fixed.

I’m really getting worried because we have literally run out of places to go for help.  No one knows what to do anymore. Despite that knowledge,  we continue to push and push for any information that could lead to a diagnosis or even an explanation for what he is going through.

Please say a prayer that we can find him the help he needs.

The school has reported that his behavior is going downhill.  He’s experiencing what are most likely seizures during the day.  He sits at his desk and has little puppet shows with his hands,  while carrying on a conversation with himself..

His speech and handwriting are going downhill as well. He’s also having a harder time tracking.  For example,  he can’t seem to track the words on a page and is frequently losing his place. He tired all the time and his stomach aches have him in so much pain that he cries for his Mommy and Daddy.

I’m so friggin tired of feeling helpless and heartbroken.  We need to find him some frankin’ relief and fast.

**Thanks for reading**

       -Lost and Tired

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Posted from WordPress for Android so please forgive any typos as auto-correct and I don’t see eye to eye. 🙂

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Silachan

All I can think of is keep a log of what he eats, when he eats, and any reaction afterwards. You might find a link that you didn't know existed. And make sure he's not eating anything that he's not supposed to (including inedible objects like plastic etc).

Lanie Litwin

I am so sorry to hear you are going through yet another bout of "figure it out". I hate that game. I wish I could offer some advice, but I have none. Just sympathy and support. Fingers crossed and a prayer said. Luck and hugs to you and your kiddo!
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