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Just finished phone consult with Dr. T


HT's Mom
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DH and I just finished speaking with Dr. T and I hung up the phone and broke into tears of relief to have had this conversation with this man. He was so thorough and sympathetic to our situation. He was particularly interested in the fact that pandas ds17 is an identical twin, and that his brother is not experiencing pandas (sorry I keep calling it that...) symptoms. He wants to test them BOTH for EVERYTHING, all subclasses of immune tests, viruses, infections, down to genetic testing of mitochondrial sequencing differences, to compare the two. All to figure out why HT is having problems while his brother is not. To recap history, we've had two HD IVIG's with Dr.K, and while we have seen immediate improvements both times, things slowly deteriorate, and lately ds is having tics we haven't seen since the major pandas episodes he experienced at age 11. So something is going on, but we just don't know. Dr. K has been wonderful, but having a second opinion and testing things we haven't looked at yet feels right.

 

A couple interesting items you all might like to hear:

 

Dr. T says the Leroy girls he has treated are getting better and he will be presenting them soon on television sitting calmly with little or no movement.

 

Dr. T said that as kids get older, it may be that PEX is more effective than IVIG. I can't quite explain the science he explained accurately enough to repeat here. Few Doctors can do it - he named Latimer and Elia as possibilities if we get to that point.

 

Dr. T said Cunningham's tests will be ready again within another two months and is in contact with her regularly.

 

Dr. T said tonsillectomy is generally better to do than not, at any age, especially if the child is a strep carrier (which of course you don't always know.) He compared it to a woman with a lump in her breast. You may not get all the cells out, but having the lump out is still a huge improvement. Emphasized antibiotics before during and after.

 

Anyway, it feels good to talk out with him, as opposed to just reading the forum (no offense! B) and wondering what to do next! He is sending scrips for multiple tests for all of us, and then we will consult again after he gets the results.

Edited by HT's Mom
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Thanks for posting. Happy to hear you're getting some good help from Dr. T., and also happy to hear the tidbits of news regarding Leroy, Cunningham test, etc.

 

Isn't it wonderful to work with a doctor with some genuine intellectual curiosity?!?! I think that should be a mandatory course in med school, with regular update courses in the topic required for maintaining a license to practice! ;)

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DH and I just finished speaking with Dr. T and I hung up the phone and broke into tears of relief to have had this conversation with this man. He was so thorough and sympathetic to our situation. He was particularly interested in the fact that pandas ds17 is an identical twin, and that his brother is not experiencing pandas (sorry I keep calling it that...) symptoms. He wants to test them BOTH for EVERYTHING, all subclasses of immune tests, viruses, infections, down to genetic testing of mitochondrial sequencing differences, to compare the two. All to figure out why HT is having problems while his brother is not. To recap history, we've had two HD IVIG's with Dr.K, and while we have seen immediate improvements both times, things slowly deteriorate, and lately ds is having tics we haven't seen since the major pandas episodes he experienced at age 11. So something is going on, but we just don't know. Dr. K has been wonderful, but having a second opinion and testing things we haven't looked at yet feels right.

 

A couple interesting items you all might like to hear:

 

Dr. T says the Leroy girls he has treated are getting better and he will be presenting them soon on television sitting calmly with little or no movement.

 

Dr. T said that as kids get older, it may be that PEX is more effective than IVIG. I can't quite explain the science he explained accurately enough to repeat here. Few Doctors can do it - he named Latimer and Elia as possibilities if we get to that point.

 

Dr. T said Cunningham's tests will be ready again within another two months and is in contact with her regularly.

 

Dr. T said tonsillectomy is generally better to do than not, at any age, especially if the child is a strep carrier (which of course you don't always know.) He compared it to a woman with a lump in her breast. You may not get all the cells out, but having the lump out is still a huge improvement. Emphasized antibiotics before during and after.

 

Anyway, it feels good to talk out with him, as opposed to just reading the forum (no offense! B) and wondering what to do next! He is sending scrips for multiple tests for all of us, and then we will consult again after he gets the results.

 

Dr T was the FIRST Dr we got to run ANY tests! And he was a GODSEND for us!!! I couldn't agree with you more on his thoroughness, curiosity to look deeper, and he genuinely cares about the child and the parents too! He is a very dedicated doctor! LOVE him!

 

When your son started with this at 8 were his symptoms severe? Curious as to why he still has to battle this at 17....keep hearing that they can outgrow it around puberty. Also you have seem to have done all the treatments I read about on here. We are 1 yr into this, only 5 months into ABX treatment, so very interested in others journeys because if I can stop this now by being more aggressive then I absolutely will keep pushing....even more than I am already!

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DH and I just finished speaking with Dr. T and I hung up the phone and broke into tears of relief to have had this conversation with this man. He was so thorough and sympathetic to our situation. He was particularly interested in the fact that pandas ds17 is an identical twin, and that his brother is not experiencing pandas (sorry I keep calling it that...) symptoms. He wants to test them BOTH for EVERYTHING, all subclasses of immune tests, viruses, infections, down to genetic testing of mitochondrial sequencing differences, to compare the two. All to figure out why HT is having problems while his brother is not. To recap history, we've had two HD IVIG's with Dr.K, and while we have seen immediate improvements both times, things slowly deteriorate, and lately ds is having tics we haven't seen since the major pandas episodes he experienced at age 11. So something is going on, but we just don't know. Dr. K has been wonderful, but having a second opinion and testing things we haven't looked at yet feels right.

 

A couple interesting items you all might like to hear:

 

Dr. T says the Leroy girls he has treated are getting better and he will be presenting them soon on television sitting calmly with little or no movement.

 

Dr. T said that as kids get older, it may be that PEX is more effective than IVIG. I can't quite explain the science he explained accurately enough to repeat here. Few Doctors can do it - he named Latimer and Elia as possibilities if we get to that point.

 

Dr. T said Cunningham's tests will be ready again within another two months and is in contact with her regularly.

 

Dr. T said tonsillectomy is generally better to do than not, at any age, especially if the child is a strep carrier (which of course you don't always know.) He compared it to a woman with a lump in her breast. You may not get all the cells out, but having the lump out is still a huge improvement. Emphasized antibiotics before during and after.

 

Anyway, it feels good to talk out with him, as opposed to just reading the forum (no offense! B) and wondering what to do next! He is sending scrips for multiple tests for all of us, and then we will consult again after he gets the results.

 

Dr T was the FIRST Dr we got to run ANY tests! And he was a GODSEND for us!!! I couldn't agree with you more on his thoroughness, curiosity to look deeper, and he genuinely cares about the child and the parents too! He is a very dedicated doctor! LOVE him!

 

When your son started with this at 8 were his symptoms severe? Curious as to why he still has to battle this at 17....keep hearing that they can outgrow it around puberty. Also you have seem to have done all the treatments I read about on here. We are 1 yr into this, only 5 months into ABX treatment, so very interested in others journeys because if I can stop this now by being more aggressive then I absolutely will keep pushing....even more than I am already!

 

We had big gaps in time when we weren't doing anything. Although we now look back on behaviours in early childhood and recognize now that they were pandas symptoms, we actually diagnosed my son at age 11. At that time he had a six month period from the spring of 5th grade into the fall of 6th when he got progressively bad. Dr. T in fact asked about "sudden onset," but it is one of those wishy washy interpretations of that term. A few vocal tics we didn't recognize at such that spring, then some shoulder shrugging and looking behind him repetitively, to a full blown case of constant repetitive vocalizations and severe OCD. He could barely function by then. Again, all this over six months. We treated him with penicillin for two weeks, and it all disappeared. He was 95%, a few eye tics, until January 2011, one year ago.

 

I WISH I had known back then to treat more aggressively. I Wish we'd known what it was at age 5. Knowing now everything I do, I would T&A, IVIG, and/or PEX very early on. I think older kids can get better, but just passing puberty doesn't resolve it for many. Something Dr. T said about how, if not treated properly and aggressively, the child develops an autoantibody production, don't quote me, but it just gets more difficult to treat. So my advice is go for it, don't wait around watching for it to get worse.

 

Not to scare anyone, just sayin'! :)

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ugh---I AM scared :( Can you elaborate on the child developing an autiantibody production? I thought that's what was happening with pans anyways? Does he mean that once they have it untreated for a certain amount of time (or say, when antibiotics do NOT help) then it's always there?

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ugh---I AM scared :( Can you elaborate on the child developing an autiantibody production? I thought that's what was happening with pans anyways? Does he mean that once they have it untreated for a certain amount of time (or say, when antibiotics do NOT help) then it's always there?

 

 

I am probably saying it all wrong. Dr. T was talking so much and so fast that I didn't quite get exactly what he was saying on that point. I had the impression of something more permanent developing, but again, I don't want to mislead anyone on exactly what he said. I will try to ask him again when we next conference. There are better voices than mine on this forum regarding all the scientific sides of the disorder. All I can say is that he and Dr. K have both clearly said to me that older is harder. So don't be scared - you are one of the lucky ones who knows all this now while your child is young! It is a good thing!

Edited by HT's Mom
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