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looking for best Dr. to treat a toddler


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I know this is subjective because everyone will have their favorite but I was wondering if people could give advice on which Dr. might be the most open to helping me with my 2 1/2 yr old daughter. We've had some bad experiences lately with dr's refusing to believe my daughter has any problems and I don't want to waste my time with any more of that nonsense. :) Our primary physician has been very helpful and he was the first person to bring up the PANDAS issue but I really think I need to see someone who specializes in PANDAS. We have been using azithromycin for almost 2mos now and are seeing moderate results, which I'm grateful for, but I kinda feel like I want to make sure we are doing everything we can. Our Dr. suggested we consult with Dr. Gupta here in SoCal but I haven't heard the best reviews on him. Any advice would be greatly appreciated.

-Amber

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Where are you exactly? I have just met Dr. Thomas Lin in Irvine (irvinekidsmd.com). He is a DAN doc, and has seen lots of PANDAS cases. We are on azithromycin and awaiting next step. I like him and think he is very educated in the PANDAS stuff. He has a child with autism, so I think he treats from the heart, which is also good, as you already know. Glad you have the confidence to say goodbye to all those unwilling to help you! Best wishes...

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Since your pediatrician is supportive, do you think he would follow the directions of Dr. K.? If so, Dr. K. does phone consults. He won't prescribe unless he has actually seen your child, but he will tell your ped. what to do. The other option (and many of us have done it,) is to hop on a plane and go see him, or Dr. B. I would recommend Dr. L, but if you have been following the posts, she is out until August. You definitely won't go wrong with Dr. K., and from what I have read and heard from others, apparently Dr. B., too (I haven't personally met him or spoken with him.) Dr. T. does not treat with more than abx, and a lot of people (including myself) have found that he does not return phone calls.

 

Maybe you can start with a phone consult with Dr. K, and then decide from there.

 

Good luck. I'm so glad for you that your pediatrician caught it early, and is so supportive. Dr. K. is a pediatrician, by the way, and maybe your pediatrician would be willing to learn a lot from Dr. K., and start treating more kids out that way like Dr. K. did. Just a thought.

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We saw Dr. Gupta a few years ago and found him quite unhelpful.

 

I would look elsewhere.

I know this is subjective because everyone will have their favorite but I was wondering if people could give advice on which Dr. might be the most open to helping me with my 2 1/2 yr old daughter. We've had some bad experiences lately with dr's refusing to believe my daughter has any problems and I don't want to waste my time with any more of that nonsense. :) Our primary physician has been very helpful and he was the first person to bring up the PANDAS issue but I really think I need to see someone who specializes in PANDAS. We have been using azithromycin for almost 2mos now and are seeing moderate results, which I'm grateful for, but I kinda feel like I want to make sure we are doing everything we can. Our Dr. suggested we consult with Dr. Gupta here in SoCal but I haven't heard the best reviews on him. Any advice would be greatly appreciated.

-Amber

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I live in Mission Viejo, Dr. Lin is my dd's pediatrician. we love him! Our DAN! is Jerry Kartzinel and the two of them are good friends and sort of work as a team on my daughter. She needs a team the way things have been going. Those two dr's have been awesome, we're having trouble getting a gastroenterologist to help us and all the negativity has sort of given me a bad attitude lately. I just wasn't sure if I should be getting an opinion from one of the top PANDAS guys? After I wrote the message, Dr. Jerry e-mailed me saying he was thrilled the zithro was helping . I had asked him if we should do some blood work before our next appt. like anti-dnase or anything else and he didn't think we needed too because the fact that she was responding to therapy was good enough proof. We have some other tests we need to work on first I guess..... dd has autism and a stressed liver. I did e-mail Dr. Cunningham's office though to ask about getting a kit. I just want to make sure I'm doing everything possible for my daughter.

 

-amber

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My dd has autism so we went through several pedi's before we found anyone willing to help us. We now have an awesome pedi and DAN! I'm just one of those people that likes to get a second and sometimes third opinion. So I think I may go ahead and make a phone consult with Dr. K just to make sure we are on the right track. It's only money right? :P I do think both of our dr's would be willing to work with Dr. K, they don't seem to have big egos. Thanks for the help.

-Amber

 

Since your pediatrician is supportive, do you think he would follow the directions of Dr. K.? If so, Dr. K. does phone consults. He won't prescribe unless he has actually seen your child, but he will tell your ped. what to do. The other option (and many of us have done it,) is to hop on a plane and go see him, or Dr. B. I would recommend Dr. L, but if you have been following the posts, she is out until August. You definitely won't go wrong with Dr. K., and from what I have read and heard from others, apparently Dr. B., too (I haven't personally met him or spoken with him.) Dr. T. does not treat with more than abx, and a lot of people (including myself) have found that he does not return phone calls.

 

Maybe you can start with a phone consult with Dr. K, and then decide from there.

 

Good luck. I'm so glad for you that your pediatrician caught it early, and is so supportive. Dr. K. is a pediatrician, by the way, and maybe your pediatrician would be willing to learn a lot from Dr. K., and start treating more kids out that way like Dr. K. did. Just a thought.

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  • 4 weeks later...
Where are you exactly? I have just met Dr. Thomas Lin in Irvine (irvinekidsmd.com). He is a DAN doc, and has seen lots of PANDAS cases. We are on azithromycin and awaiting next step. I like him and think he is very educated in the PANDAS stuff. He has a child with autism, so I think he treats from the heart, which is also good, as you already know. Glad you have the confidence to say goodbye to all those unwilling to help you! Best wishes...

 

Do you know if Dr Lin can do steroid burst/IVIG? do you know if he helps with insurance?

Is he responsive? Does he answers phone calls?

We had a bad experience with one Dr. that took a lot of money for the consultation, and after couple of weeks, stopped answering phone calls/emails.

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Amber -

 

Don't let any of the other Dr's dissuade you from finding answers. My pediatrician diagnosed our son with PANDAS a couple of months after his 2nd birthday. He's responded well to treatment so far, and we just had our first appointment with Dr. Murphy at USF and she's confirmed our diagnosis and path. Both have said that while most PANDAS behavior is common for that age group - you know when it's be blown over the top. And no one knows better than mom.

 

Unfortunately, our pediatrician and Dr. Murphy are both in Florida - so they won't be much help to you - but good luck with your search!!

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We had a consult with Dr. Lin yesterday for my new baby but we ended up talking about my dd the whole time. He seemed very interested in helping us with the PANDAS and I'm considering working with him rather than our current DAN! He has helped my friend's son quite a bit for PANDAS and I don't see why he wouldn't be able to help with a steroid burst/ ivig. We've had good experiences with his office, it's just him and one or two nurses. But we've only used him for sick visits and basic pediatrics. I rely on my DAN! for almost everything so I rely haven't had a huge need to go to Dr. Lin a whole lot. He's a super nice guy and really seems to care about his patients.

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Thanks. My dd's ocd has been horrible lately.... I think we do need to get a second opinion. I e-mailed Dr. K about a month ago and he hasn't responded. I should probably send another..... I know he's busy. But I think I may do a consult with Dr. Lin as well since we're already patients of his, I could probably get in quickly. He is friends with our DAN! so I think he's been reluctant to step on toes and give advice because we just hired him as a pedi. But he really does seem to know about PANDAS and he's offering help if we need it. At the end of the day, I just need to do what's best for my daughter. Our DAN! has been able t oget my dd pooping daily, sleeping through the night, and has gotten her reflux under control over the 5mos we've worked with him. Those were all huge hurdles to overcome even they sound so simple so I am grateful for that. He's very methodical and likes to build a good foundation o I'm happy about that but we're also really struggling with these PANDAS symptoms.

-Amber

 

 

Amber -

 

Don't let any of the other Dr's dissuade you from finding answers. My pediatrician diagnosed our son with PANDAS a couple of months after his 2nd birthday. He's responded well to treatment so far, and we just had our first appointment with Dr. Murphy at USF and she's confirmed our diagnosis and path. Both have said that while most PANDAS behavior is common for that age group - you know when it's be blown over the top. And no one knows better than mom.

 

Unfortunately, our pediatrician and Dr. Murphy are both in Florida - so they won't be much help to you - but good luck with your search!!

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Gee, let me guess who that was...

[We had a bad experience with one Dr. that took a lot of money for the consultation, and after couple of weeks, stopped answering phone calls/emails].

 

I can't say what Dr. Lin would do in any other case, but here is what he's doing in ours:

  • He put my son on 500 mg. azithromycin per day, as well as diflucan for yeast overgrowth, high dose vitamin C, and an Omega-3 capsule, as well as wanted him taking a probiotic
  • Following this, (and mild improvement), he started on a tapering, one month prednisone, starting at 40 mg. He switched from diflucan to nystatin (safer, not absorbed into circulation)

Dr. Lin answers emails, but may be late if it is not urgent. He is a very efficient person and manages his time. He has one assistant. He will order IVIg but wants to ride out the steroid therapy. In my son's case, we are dealing with a stubborn mild OCD, and some behavior issues that have resolved nicely with the extended pred. therapy, rather than simply a steroid burst for challenge. Dr. Lin is very sympathetic, and has a plan and follows it. He does expect patience from mom! I have been happy with him.

 

 

 

 

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Amber, sorry things have been so rough with the PANDAS symptoms, but I also know how huge it is to get the kids pooping and sleeping - hooray for that! Anyway, you know who I'm going to suggest :D

Thanks. My dd's ocd has been horrible lately.... I think we do need to get a second opinion. I e-mailed Dr. K about a month ago and he hasn't responded. I should probably send another..... I know he's busy. But I think I may do a consult with Dr. Lin as well since we're already patients of his, I could probably get in quickly. He is friends with our DAN! so I think he's been reluctant to step on toes and give advice because we just hired him as a pedi. But he really does seem to know about PANDAS and he's offering help if we need it. At the end of the day, I just need to do what's best for my daughter. Our DAN! has been able t oget my dd pooping daily, sleeping through the night, and has gotten her reflux under control over the 5mos we've worked with him. Those were all huge hurdles to overcome even they sound so simple so I am grateful for that. He's very methodical and likes to build a good foundation o I'm happy about that but we're also really struggling with these PANDAS symptoms.

-Amber

 

 

Amber -

 

Don't let any of the other Dr's dissuade you from finding answers. My pediatrician diagnosed our son with PANDAS a couple of months after his 2nd birthday. He's responded well to treatment so far, and we just had our first appointment with Dr. Murphy at USF and she's confirmed our diagnosis and path. Both have said that while most PANDAS behavior is common for that age group - you know when it's be blown over the top. And no one knows better than mom.

 

Unfortunately, our pediatrician and Dr. Murphy are both in Florida - so they won't be much help to you - but good luck with your search!!

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