New health concerns for 2 of my kids with #Autism 



These sed rates have always been normal, at least when they have been tested. 

We learned that his previous lab results showed is sed rate was 19, when normal is between 0 – 12. The lab work he had done the other day, showed his sed rate to be 20 currently. 

That’s really interesting because from what we can tell, he hit a flare within the last few days. 

This is the very first time we have found any changes in his sed rates and while this isn’t a good thing, it does give us a direction to go in. 

Hopefully, this ends with a treatment that improves Emmett’s quality of life. 

Our next move is to hit rheumatology at Akron Children’s Hospital ASAP. That appointment will be made in Monday. 

In regards to Gavin, his issue appears to be new and it involves his vision. Gavin informed me yesterday that he was unable to play a game with Emmett because when he looked at the board, all he could see was black. 

It’s important to understand that Gavin is not a reliable source of information about what’s going on with his body. That being said, we have to take this seriously because it’s his vision. 

We’re waiting for an appointment with his eye doctor, also likely obtained on Monday. 

This isn’t entirely shocking because the overall state of his body is in a slow but steady state of decline. Until we get this checked out, we don’t know if anything is even happening yet, or if it can be treated. 

What’s frustrating is that we’ve had many times where we discover new problems because of something he’s told us, but we’ve also had many times where what he’s told us never pans out. 

We have to react regardless because the one time we don’t, something will be seriously wrong. 

10 comments

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  1. My son has jia and rarely does his sed rate bounce up even in active flare. Some people just don’t. I don’t always show typical signs of inflammation either. Dr. Toth with also do a c reactive protein. That’s where they usually find signs in me. As for the vision disturbance, that could be an emergency situation. You might want an ophthalmologist not an optometrist if you don’t have one already Akron children’s has a good one we’ve seen.

      • on April 8, 2017 at 8:45 pm

      Gavin normally goes to the Cole Eye Institute at the Cleveland Clinic but they’ve said we can move to Akron if we’d like.. We see Dr. Lawhawn… ☺

  2. I’m sorry. Praying for you guys.. Quercetin and vitamin C is good for lowering high inflammation. My youngest had that and we managed to bring it down using those two things. If you can get either of those, even vitamin C gummies into him, it would help. My son has PANDAS and Lyme disease and tick borne infections. This was a year before they found those infections.

      • on April 8, 2017 at 8:43 pm

      Thanks Rebecca.. ☺

  3. ::hugs::

  4. My son has jia and rarely does his sed rate bounce up even in active flare. Some people just don’t. I don’t always show typical signs of inflammation either. Dr. Toth with also do a c reactive protein. That’s where they usually find signs in me. As for the vision disturbance, that could be an emergency situation. You might want an ophthalmologist not an optometrist if you don’t have one already Akron children’s has a good one we’ve seen.

    1. Gavin normally goes to the Cole Eye Institute at the Cleveland Clinic but they’ve said we can move to Akron if we’d like.. We see Dr. Lawhawn… ☺

  5. I’m sorry. Praying for you guys.. Quercetin and vitamin C is good for lowering high inflammation. My youngest had that and we managed to bring it down using those two things. If you can get either of those, even vitamin C gummies into him, it would help. My son has PANDAS and Lyme disease and tick borne infections. This was a year before they found those infections.

    1. Thanks Rebecca.. ☺

  6. ::hugs::

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