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Dx Lyme - after PEX for PANDAS


RNmom

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Well ds14 is three days post Bicillin shot #2 and ready for shot #3 tomorrow. He is progressing in a "mixed fashion." For simplicity sake I will make one list for what has looked better over the past three days and one for what is not looking so great:

 

Better:

The red rash is no longer dominating his face and cheeks. Now, it is mostly "pink" and mostly located on his face.

The "startle reflex" is now at a #3 on a scale of 1 - 10 (with 10 being extreme).

His speech is more fluid and his thinking is more flexible.

He has had periods of "relaxation." We have not seen this in a while.

His history teacher e-mailed me that he "was better able to track the lesson today." :-) (I have not heard something like that all year.)

Tonight he asked why he could not have the shot today.

 

Not so great:

Very anxious.

Brief but intense bouts of rage.

Both associated with a flare up of that red rash on his face.

OCD is worse.

Tonight (red rash burning bright on his cheeks) he asked why he could not have the shot today!

The OCD item really worries me. I will be really watching the response to shot #3 tomorrow.

Edited by RNmom
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Well... that is definitely a mixed bag of reactions. Let's hope you start seeing more of 'not so greats' gradually improve in time.

 

Wish I could say we've seen improvement in the 8 months my son has been treated, but honestly we haven't.

 

So, I guess some improvement is better than none.

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RNMom, sounds like your son is making progress. How often is your son getting the Bicillin shots. My DS, 11, is getting 2.4 million units once a weeks, but I have read that the optimal dose is 1.2 million twice a week. Bicillin is definitely the treatment of choice for Borrellia. Has your son been tested for allergies. My son has bright red cheeks which can be tied to two things, wheat allergy and HHV1?? the version for roseola that he is active for. Sounds like he is wanting to get the shots which can only be a good thing, because they are painful. Keep us posted and hopefully we can all navigate this journey together!

Cobbie

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