Dr. L or Dr. T?

[SAND9417]

We will be planning a trip to a specialist to have our daughter evaluated for autism and possible PANS. If she does have PANS it would not be a "textbook" case, but we really need someone who is willing to think outside the box about what might be the underlying cause of her challenges and how we might treat them. We are leaning toward Dr. T because he seems willing to leave no stone unturned and consider all possibilities. However, Dr. L's location is much more convenient for us. Visiting either one will be a sacrifice for us, so I want to make it count. In order to make the best possible decision for our daughter, I would truly appreciate any input about what we might get out of an evaluation with these two doctors in terms of the tests each typically runs, the types of treatment each is most likely to prescribe, how conservative each is in making diagnoses, or general recommendations. Please feel free to PM me if you prefer. Thank you in advance for your help.

[Gpookie]

I don't know about Dr. T, but Dr. L works for us because: if it's PANDAS, she'll see it right away, if it's not, she'll tell you (she's a neurologist and can spot other issues, too). Also, she works wonderfully with other doctors/specialists as she respects their specialty as she wishes hers to be. Her assistants and she are very responsive once you are an established patient, by phone and email and if you need a prescription...

 

No experience with Dr. T, but Dr. K is also good, though very different from Dr. L

Edited September 7, 2016 by Gpookie

[KLW]

My son was not a text book case, either, but Dr. L diagnosed PANDAS after seeing the results of his Cunningham panel that she ordered. At our first consult with her and before the results she honestly wasn't 100% convinced, but after his high CAMKII and his response to initial prednisone burst she was confident it is PANDAS. I feel she has been straight down the line of treatment options. My son was already on antibiotics for years when we began seeing her as well as subcutaneous Ig infusions (for hypogammaglobulimia), but when that was not producing adequate results she said it was time to do High-Dose IVIg, which she gladly sent recommendation to our local immunologist so we could pursue local options and insurance payment as opposed to travelling to DC for infusion (we are eight hours away). Most recently she sent recommendation for Solu-Medrol pulsed-dosing while we wait the months to see if the three HD IVIgs we did produce the results we want. We are going back to DC in Oct to see her in person, but the Facetimes in the interim through the year are a wonderful way to keep things going.

[dasu]

My sister's P-kid (adult, with severe depression, cognitive issues, bi-polar; who also went through multiple lyme infections) saw Dr T. They did a series of expensive tests that showed infections, which they treated. His condition improved some then deteriorated. He then did more genetic testing which netted nothing. They were disappointed and dropped him without pursuing further treatment. As far as I know he advocates IVIG but I have not read of many patients of his who have done PEX or Rituximab. If others have seen any contradictory information please correct me - there are some very devoted patients of his who may know better.

 

We have used Dr L. She treats traditional strep mediated PANDAS but is open to PANS, although she herself will not treat other infections. If you use her I would also get Lymes and coinfection test as well other PANS drivers. Dr L is great.

Edited September 8, 2016 by dasu

[SAND9417]

Thanks for all of the input. Dr. L seems to come highly recommended. I am, however, concerned about Dasu's comment that she diagnoses traditional PANDAS and does not treat infections other than strep. My daughter's biggest flare came with a coxsackie and EBV infection, so we would want someone who readily diagnoses PANS but also knows how to treat viral infections (if needed).

[Gpookie]

One of my kids only flared with allergies. Dr. L treats his PANS and referred us to someone to treat his high IgEs (1800+!!). She is very very good at working alongside specialists and pediatricians...

 

Thanks for all of the input. Dr. L seems to come highly recommended. I am, however, concerned about Dasu's comment that she diagnoses traditional PANDAS and does not treat infections other than strep. My daughter's biggest flare came with a coxsackie and EBV infection, so we would want someone who readily diagnoses PANS but also knows how to treat viral infections (if needed).

[dasu]

That is correct - she works well with other providers. This can often work well as the other providers use insurance.

[HopeinHIM]

Thanks for all of the input. Dr. L seems to come highly recommended. I am, however, concerned about Dasu's comment that she diagnoses traditional PANDAS and does not treat infections other than strep. My daughter's biggest flare came with a coxsackie and EBV infection, so we would want someone who readily diagnoses PANS but also knows how to treat viral infections (if needed).

Have you looked into Dr H. Jnouchi at St Peter's in NJ. She is an Immunologist, treats PANS and Panda's and the gut!! She also fights hard for IVIG w your insurance if she thinks you need it. She is NOT an LLMD but I don't know where you will get both in one doctor. She is in MOST insurance networks and her son heads up CHOPS immunologic dept. We have been with Dr T for several years. We go to both. We find him to be knowledgeable in many areas and he IS helpful with school letters and getting anti biotics if necessary. Dr T is very very busy and after your apt, it's not easy to get the office to respond promptly. I love him and his staff but we use Dr J more regularly. Good Luck!

[Louisa]

We will be planning a trip to a specialist to have our daughter evaluated for autism and possible PANS. If she does have PANS it would not be a "textbook" case, but we really need someone who is willing to think outside the box about what might be the underlying cause of her challenges and how we might treat them. We are leaning toward Dr. T because he seems willing to leave no stone unturned and consider all possibilities. However, Dr. L's location is much more convenient for us. Visiting either one will be a sacrifice for us, so I want to make it count. In order to make the best possible decision for our daughter, I would truly appreciate any input about what we might get out of an evaluation with these two doctors in terms of the tests each typically runs, the types of treatment each is most likely to prescribe, how conservative each is in making diagnoses, or general recommendations. Please feel free to PM me if you prefer. Thank you in advance for your help.

My son had seen Dr T for 3 visits. With all the extensive blood work and expensive autoimmue test, he seemed to be confident in getting the right treatment for my son. Unfortunately, the antibiotics and the prednison later on made his OCD even worse. Dr. T and his office responded to our concerns about my son's negative reaction to medicine very late. For one or two times, they simply did not respond at all. So we stopping going.

[Louisa]

I don't know about Dr. T, but Dr. L works for us because: if it's PANDAS, she'll see it right away, if it's not, she'll tell you (she's a neurologist and can spot other issues, too). Also, she works wonderfully with other doctors/specialists as she respects their specialty as she wishes hers to be. Her assistants and she are very responsive once you are an established patient, by phone and email and if you need a prescription...

 

No experience with Dr. T, but Dr. K is also good, though very different from Dr. L

Can you give me the full name of Dr. K and Dr. L?

[TLJOHNS]

I am also new to all of this and am desperately looking for a good diagnostician (& treatment provider) in Florida or Georgia. Can you tell me the full names of these doctors and where they are located? I am questioning PANDAS/PANS with all 3 of my boys (13, 9, 6) AND my husband! Is that possible? , all have similar "symptoms" but my 9 year old is doing the worst and seems to be deteriorating further. All 3 of my boys had chronic, really bad ear infections as little guys, as did my husband as a child, all have anxiety, meltdowns & rage attacks (esp my 9 year old), bed wetting (my husband did as a child too), tics (my husband did too), ADHD, sensory issues, lots of GI issues (esp my 9 year old) etc. Psychiatric meds (for anxiety & bipolar symptoms) have never "worked" for my husband, ADD/ADHD meds never did anything for my 13 year old. We are in North Florida and have LOTS of deer even in our yard. All of my boys have had multiple ticks bites. All 3 & my husband also have MTHFR defect...it seems from what I have read, that there is some link there - possibly in the body's lowered ability to detox - ? Anyway, I am SUPER desperate to get help for all of them...esp my 9 year old who is really suffering.

 

Any provider suggestions?

[Rdw]

 

Thanks for all of the input. Dr. L seems to come highly recommended. I am, however, concerned about Dasu's comment that she diagnoses traditional PANDAS and does not treat infections other than strep. My daughter's biggest flare came with a coxsackie and EBV infection, so we would want someone who readily diagnoses PANS but also knows how to treat viral infections (if needed).

Have you looked into Dr H. Jnouchi at St Peter's in NJ. She is an Immunologist, treats PANS and Panda's and the gut!! She also fights hard for IVIG w your insurance if she thinks you need it. She is NOT an LLMD but I don't know where you will get both in one doctor. She is in MOST insurance networks and her son heads up CHOPS immunologic dept. We have been with Dr T for several years. We go to both. We find him to be knowledgeable in many areas and he IS helpful with school letters and getting anti biotics if necessary. Dr T is very very busy and after your apt, it's not easy to get the office to respond promptly. I love him and his staff but we use Dr J more regularly. Good Luck!

 

 

 

 

Do you know if he is also PANs knowledgeable? CHOP is much closer to me so I would go there if I can - but I understand that CHOP is not PANDAS friendly.

[MC2]

I realize it has been a year since your query about a provider in Florida, but thought I would make note even if late: I have heard a lot about Dr. Tanya Murphy at the Univ of South Florida. With any luck, you no longer need this information. Sorry you have been dealing with this.