Hello from San Antonio!

[texascatholic]

Hi There...

 

I am a homeschooling mom of 5 daughters here in San Antonio. My eldest dd who is 8 seems

to have PANDAS or PITANDS. Her strep titres have always been negative, so I am guessing

PITANDS?

 

Her symptoms started at the age of 4 with OCD and tics. I don't remember if it was related

to a particular illness (the initial onset) because we were sick so often during that time.

We saw psychologists and psychiatrists, puzzled at her out-of-the blue changes. One of them suggested

we investigate PANDAS, but we didn't due to the symptoms disappearing.

 

They've disappeared and reappeared over the past 4 years. Our last big exacerbation started around Christmas

and has continued to this day with a few minor remissions. It is characterized by OCD (always having to check things,

asking about wiping things due to germs, religious issues like at one time when she asked me if she was "going to ######" every 5 minutes - thankfully this one has abated, telling me she thought she peed on the floor when she did not, constanting confessing things, etc.), minor tics (mouth tics, some phrases that get repeated, grimaces, hand motions - these come and go and are not all the time excepte a mouth tic which she does frequently), and lately rages/age-inappropriate temper tantrums. We've had some nice breaks in between where I thought things were gone, but after any

illness, even a virus, they reappear.

 

We did the Cunningham test and she had an elevated Dopamine1 (2000) and a slightly elevated CamKinase II (139). Do these sound like PANDAS

style numbers? Dr. Cunningham seemed to imply on the phone that although they were low-level, they were still PANDAS scores.

 

We are trying to find a good doctor to help us out. The Air Force hospital in town (we are military) won't do a thing (except offer SSRIs and CBT). Anyone heard of Dr. Rao in Plano? We have an appointment to visit him at the end of this month, but he is 5 hours away and it would be nice to find someone closer.

 

Thanks for reading this long post!

 

God bless us all on this journey!

Holly

[thereishope]

Welcome. Low titers does not mean strep wasn't present. Also, a lot of kids on here will start to react to viruses, allergies and even mere exposure to strep so what you are now seeing isn't uncommon. It is also a reason to rule out strep in every family member, even if no symptoms are present.

 

As for a doctor, here is a doctor list http://www.latitudes.org/forums/index.php?showtopic=6428

 

btw..there are others from Plano area on here. If you search "Plano" some threads will pop up like this one http://www.latitudes.org/forums/index.php?showtopic=8318&st=0&p=68610&hl=plano&fromsearch=1entry68610

Edited August 12, 2010 by Vickie

[EmersonAilidh]

Wait. Are you in Plano or San Antonio?? I live RIGHT by Plano. Dr. Rao wasn't covered by my insurance, so we looked into Dr. Goebel, who is a P.A.N.D.A.S. specialist in Plano. I'm seeing him in six days but I think that he would be a good option.

[texascatholic]

Hi There...

 

I am in San Antonio. We could not get insurance to give us a referral to Dr. Rao, but we may just pay for the initial visit

to see what comes out of it. Hoping all goes well! Thanks for the info on Dr. Goebel!

[EmersonAilidh]

Hi There...

 

I am in San Antonio. We could not get insurance to give us a referral to Dr. Rao, but we may just pay for the initial visit

to see what comes out of it. Hoping all goes well! Thanks for the info on Dr. Goebel!

 

 

You too! Happy to help.

[DebC]

Hi There...

 

I am in San Antonio. We could not get insurance to give us a referral to Dr. Rao, but we may just pay for the initial visit

to see what comes out of it. Hoping all goes well! Thanks for the info on Dr. Goebel!

 

 

You too! Happy to help.

 

Just a quick note that Dr. Goebel can diagnose but doesn't offer any type of treatment. He diagnosed our daughter a year and a half ago and won't do any sort of prophylactic antibiotics. We see our ENT for those. I've heard good things about Dr. Rao and there are several families in our Dallas area support group who are seeing a pediatrician by the name of Dr. Ashworth, I believe.

[texascatholic]

Good to hear nice things about Dr. Rao. Other docs that we were trying to get the referral from were not comfortable

with him and said he had a lawsuit on his record concerning chelation therapy for autistic children. They claimed he

diagnosed and treated metal toxicity as if it were heavy metal poisoning and diagnosed it based on urine test rather than

blood serum. Anyone know about this? It seems like they are complaining about nothing, but I don't know a whole

lot about the subject. Hmmmm... a lot to think about.

 

God bless!

[lss]

Holly,

 

I sent you a pm.

 

Linda

[saidie10]

I sent you a PM...

[texascatholic]

Hi Sadie...

I sent you a PM, too!

 

Holly

[EmersonAilidh]

Hi There...

 

I am in San Antonio. We could not get insurance to give us a referral to Dr. Rao, but we may just pay for the initial visit

to see what comes out of it. Hoping all goes well! Thanks for the info on Dr. Goebel!

 

 

You too! Happy to help.

 

Just a quick note that Dr. Goebel can diagnose but doesn't offer any type of treatment. He diagnosed our daughter a year and a half ago and won't do any sort of prophylactic antibiotics. We see our ENT for those. I've heard good things about Dr. Rao and there are several families in our Dallas area support group who are seeing a pediatrician by the name of Dr. Ashworth, I believe.

 

Well. That's disheartening. :/