Phila mom looking for treatment

[cfamily]

Our Daughter has had what we suspect to be pandas since 07. The "kidsfirst" doctors have been fine with strep tests and the abx. We have been unable to get into chop to see the Dr. Elia and Dr. Latimer is not taking new patients.

 

Our recent recurrance started about 6 weeks ago and we have had a course of augm. and weekly cog beh therapy for intrusive worry thoughts. Now we have suicidal thoughts and scratching, pinching and hurting herself. This prompted us to go to er at chop phila.

 

 

Let me just share that chop made me feel like an idiot.

 

The initial nurse at the er was sweet

 

the "learning doctor" looked irritated and annoyed as i tried to explain pandas and wouldn't make eye contact.

 

the attending peditrician basically said that I shouldn't be fooled by doctors who think they can help my kid. (I gave her a print out from Dr. K's Website) They take money from parents who can barely afford to eat.

 

So was she saying that Dr. K is bamboozling people? That all of his case studies are not valid?

 

How insulting.

 

The Pychiatric Doctor "Lam" said that the infectious disease doctors at chop aren't on board with pandas, so they don't support treatments like ivig.

 

I left after 7 hours feeling horrible. They did say that Dr. Elia would fit us in in the next couple of weeks.

 

Where do we go from here?

 

Dr. K. said he will do a phone consult and he was so prompt in answering my email! Should we just try to go to illinois and get an ivig? What is the pattern of treatment that most follow and if anyone can suggest, pediatric docs or other specialists in philly we should see it would be greatly appreciated.

 

Looking for a little support today.

Thanks

[dcmom]

I would suggest Dr B in CT.

 

We see DrL, but if I couldn't, I would go straight to Dr B.

 

CHOP are close minded docs, that would rather stick to their comfortable theories than help kids.

[Kayanne]

I didn't realize that Dr. Latimer was not taking new patients. Did you call her office recently?

[cfamily]

I didn't realize that Dr. Latimer was not taking new patients. Did you call her office recently?

[cfamily]

I didn't realize that Dr. Latimer was not taking new patients. Did you call her office recently?

Called on Thursday

[EAMom]

Our Daughter has had what we suspect to be pandas since 07. The "kidsfirst" doctors have been fine with strep tests and the abx. We have been unable to get into chop to see the Dr. Elia and Dr. Latimer is not taking new patients.

 

Our recent recurrance started about 6 weeks ago and we have had a course of augm. and weekly cog beh therapy for intrusive worry thoughts. Now we have suicidal thoughts and scratching, pinching and hurting herself. This prompted us to go to er at chop phila.

 

 

Let me just share that chop made me feel like an idiot.

 

The initial nurse at the er was sweet

 

the "learning doctor" looked irritated and annoyed as i tried to explain pandas and wouldn't make eye contact.

 

the attending peditrician basically said that I shouldn't be fooled by doctors who think they can help my kid. (I gave her a print out from Dr. K's Website) They take money from parents who can barely afford to eat.

 

So was she saying that Dr. K is bamboozling people? That all of his case studies are not valid?

 

How insulting.

 

The Pychiatric Doctor "Lam" said that the infectious disease doctors at chop aren't on board with pandas, so they don't support treatments like ivig.

 

I left after 7 hours feeling horrible. They did say that Dr. Elia would fit us in in the next couple of weeks.

 

Where do we go from here?

 

Dr. K. said he will do a phone consult and he was so prompt in answering my email! Should we just try to go to illinois and get an ivig? What is the pattern of treatment that most follow and if anyone can suggest, pediatric docs or other specialists in philly we should see it would be greatly appreciated.

 

Looking for a little support today.

Thanks

 

CHOP is bad news for PANDAS kids/families. Also, Dr. Elia (unfortunately) really doesn't do much to treat PANDAS...realistically not that helpful.

 

Dr. B. (Ct) would be a good choice. Also, Tantrums recently saw "Dr. Boo" in PA http://www.latitudes.org/forums/index.php?showtopic=5023&pid=93899&start=&st=#entry93899 so that might be someone else to consider. You could send Tantrums a pm.

[abbe]

I won't get into my long, long story about CHOP in Phila but let's just say they almost killed my son. (literally) go to Dr. Chung in Moorestown NJ and tell him Abbe sent you.

[PhillyPA]

Good 'ol CHOP. And you saw Dr. Lam too? Dr. Lam thought my son had pandas but the titers were low so of course they assumed childhood schizophrena. You know - because that is what most 5 year olds have when they have a complete overnight personality change.

 

Run run run from CHOP.

 

You can try Dr. Legados (spelling?) at St. Christophers Hospital in Philly. He says he is open to IVIG and believes in Pandas. I don't know anyone who has actually seen him. He is a neurologist and his wait list is three months.

 

His office manager is Marlene Roddy. Try calling her to schedule an appointment. 215-427-5506.

[philamom]

Another wonderful Mom here gave me the name of a DAN doctor in Montgomery County who accepts insurance. He knows some about PANDAS & Lyme, and is willing to work with other doctors on treating. He is a very sweet doctor...fantastic with children! PM me if you would like his info.

 

We see Dr. B in Connecticut for PANDAS.

Edited December 20, 2010 by philamom

[browneyesmom]

I called this morning and made an appointment with Dr. B in CT - Feb 3. Next available, I was told is Feb 17. Don't feel badly - a lot of docs still are not ready to accept the research and new medical info about PANDAS; it does not mean you are wrong. Doctors are not infallible. Don't go back - focus on docs who can help your child... you'll get through this.

[browneyesmom]

Dr. B's website that I found via Google: http://www.advanced-allergy.com/

[tpotter]

I'm PMing you