PANDAS OR LYMES

[Wilma Jenks]

When my girl was on Vanco. and Diflucan, she was more clear minded during the day and psychotic thoughts were less. At that time, her OCD at night was out the roof though! She is now on low dose seroquel, and the severe OCD is a bit better at night, but her racing thoughts are so severe and terrifying to listen too. Anyway.... I was thinking that adding the Vanco back in for the severe racing thoughts may help. Last night she had me say the same sentence over for 1 whole hour until I said it right and the intonation was correct. She finally got so mad at me 4 not getting it right that she through a glass of water at me. Not a good night. We see Dr. Beals this Wed. to see if Lymes plays a role in this. I have a gut feeling its PANDAS though, but I am not an expert. This is what we have to go on:

 

Agitated as a new born and it got worse...

Lump under her ear, the size of walnut, at ten days old.

An MRI that showed only a sinus infection

Abnormal EEG, but no seizures

Restless Leg Syndrome

Super acky ankles since she could talk

High Clostridia

Cam Kinase is 166

Ingenix test was questionable. I have to get numbers to post again, sorry.

 

I had strep throat all the time as a kid, and had to have tonsils out.

What are your thoughts?

[LNN]

Wilma,

Having followed some of your posts, I wouldn't be surprised if your daughter were battling more than one issue. Some of us have kids who look "text book" Pandas but don't follow the "script" and don't respond they way they're supposed to to treatments. That's when we end up finding out that there's more than one battle going on.

 

I'm not sure if you should focus on a name for the disease so much as on what works and what doesn't. Since a lyme protocol of combo abx isn't so different than a Pandas protocol of one broad-spectrum abx, Dr B may be able to put you on a treatment that would be helpful for both. You should also discuss how tick co-infections could be muddying the waters. It's an onion and I'd make sure you were able to give him a clear picture of what you've tried and with what results.

 

I'd recommend a timeline. For example...

Jan 1- Jan 10 - abx 1, seroquel, diflucan...then what behaviors were better or worse

Jan 11-Jan 30 - list of medications...behaviors

 

Also bring all of the lab work you may have.

 

One of the biggest mistakes I made was being "married" to a diagnosis (in our case, Pandas) and ignoring or rationalizing things that didn't fit, such as a spike in symptoms that didn't occur due to illness that I blamed on exposure to strep, when in fact it was probably due to lyme/bartonella. I think having a name or diagnosis is helpful, but an incomplete diagnosis can cost you a lot of time and money. I'd suggest laying out all of your information in an organized, concise manner and let Dr B review it all as a clean slate. Organization and making him aware of important data is key.

 

Good luck!