Had Consult with Dr. Trifiletti

[Ellen]

After bringing my son to see Dr. Trifiletti, I am very comfortable recommending him to others on this forum. He has a wealth of information about PANDAS, explains the science of it very well, and gave us excelllent suggestions and advice. His bedside manner is great, and my son really liked him too. (Thanks Dr. T!) He has been getting a lot of PANDAS patients, and I am sure he will be seeing many more. He told us that he plans to post on the forum again soon.

Just some background info on my son: He is 13 and has been struggling with PANDAS for almost three years. His OCD started with a strep in January of 2007 (before that there was a history of mild tics associated with strep since age 5), and he became much worse after two vaccines (Chicken Pox and Hep A) several months after the strep in 2007. After the vaccines he really went downhill and had major focusing problems, hyperactivity, pacing, insomnia, facial grimacing, chorea movements, new tics, long zoning out episodes that could often last for minutes at a time, low frustration tolerance and inability to do homework or concentrate in school and eventually rages.The first neurologist who saw him thought it could be PANDAS but suggested SSRIs as the treatment and this made things so extreme that there were multiple psychiatric hospitalizations. He is much more stable now, and he did improve a great deal after we started a gfcf diet and supplements with DAN doctors. He also had plasmapheresis in the summer of 2008 with Dr. Elia at CHOP, which seemed to be partially helpful but there were still many remaining OCD and focusing issues. Before we saw Dr. Elia we had looked into IVIG, but got mixed opinions about whether or not it would be safe for my son because he has low IGA and there was concern about the possibility of an anaphylactic reaction. This summer we saw Dr. Latimer, who felt that PEX would be more efficient and effective through a central line (at CHOP it was done through a periperhal line and they had to stop after it was 70 percent complete because of vein problems.) We also saw Dr. Bouboulis, another excellent doctor, who tested my son and found many significant immune deficiencies including low IGG (total and subclass 4), low IGM, a Selective IGA 2 Deficiency, and he failed 12 out of 14 of the strep pneumoniae titers. Dr. Bouboulis told us if we went ahead and did plasmapheresis at Georgetown, we would most likely need to follow up with monthly IVIG and that he could give him a low IGA version of IVIG to avoid the risk of an allergic reaction. So we decided to move forward with PEX and possibly follow up with IVIG with Dr. Bouboulis if we didn't see good enough results.

Now we are 7 weeks post PEX and we are seeing only small improvements and in the last couple of weeks, I have been starting to worry that PEX was not effective enough. His general mood is a little better and he is less spacey, but I was hoping to see more by now. When we got back from DC I started to realize from reading the forum that he needed to be on a higher dose of zithro, so I started increasing slowly from 250 mg twice a week to 250 mg a day, which is where we are now. I have had to move slowly with this and increase the probiotics because in the past this dose of zithro has been rough on his stomach. I want to work up to 500 mg a day (he is 95 pounds), and Dr. Bouboulis agrees with this idea. I am hoping that his stomach will be able to handle it and the higher dose may show a more dramatic improvement. Our plan has been to just wait and see how much improvement we get from PEX and the increase in antibioitics before moving forward with IVIG with Dr. Bouboulis. I decided to consult with Dr. Trifiletti to get his views about whether or not we are on the right track.

I'm glad I did! Dr. Trifietti really impressed me with his knowledge of PANDAS and had some very good advice. He feels that we are on the right track with increasing the antibiotics and that he does recommend following up with IVIG. He believes that in my son's case, plasmapheresis is not really that helpful because it gets rid of the good antibodies as well as the bad and does not do anything to address the immune deficiencies, which he thinks may very well be the problem underlying the PANDAS. He feels in his case, strep may not be the only trigger and there could be viruses or other things going on (such as non-group A strep) and that these problems can be best addressed through IVIG. He plans to contact Dr. Bouboulis and suggest doing some kind of T cell study to possibly identify what other things might be going on besides strep. (Does anyone have information on what exactly a T cell study is and what they look for?) Also, I asked him about other antibiotics we could try if we don't have enough improvements from a 500 mg day dose of Zithro and he mentioned Clindomycin. (We can't do Augmentin because of a bad hive reaction to Amoxicillin in the past.) Has anyone been on Clindomycin for PANDAS? Any information would be appreciated. I also asked him about the possibility of IV antibioitcs for PANDAS, and he explained that the effects were likely to be just temporary and would not address the immune issues like IVIG. He did try IV antibiotics in one case that he considered to be extreme, and it helped the boy get stable but the effects wore off and the boy didn't get better until he had plasma exchange. One very encouraging piece of news that Dr. Trifilletti told us is that in his experience, kids do get better in time. He has seen many cases over the years, but that they eventually resolve and the kids do get well. I don't believe he has seen a case of PANDAS that did not eventually get better, so this was very uplifting news to hear.

Before this appointment, my husband still had some reservations about moving forward with IVIG and now I think he is fully on board. I plan to follow up with Dr. Bouboulis some time soon about the T cell study and probably setting up monthly IVIG some time soon. I also just went through my son's records from 2008 and found that he did test high for the HHV-6 virus (1:80 with the range being <1:10). I am not exactly sure what this means or if it is just indicative of a past infection but plan to speak to Dr. Trifiletti and/or Dr. Bouboulis about it some time soon.

I am no longer feeling as down and discouraged because my son has not improved enough from PEX. There are other options for him. Since this appointment I am starting to feel hopeful again.

 

Ellen

[Suzan]

Excellent update! I am glad to hear it since we leave in 18 days to see Dr. T! I am glad you are feeling hopeful and have a direction to go in. Please keep us posted!

 

Susan

[KeithandElizabeth]

Ellen:

 

Thank you for sharing so much information with us. We all probably needed to hear that these kids do get better!!!

 

We are currently doing monthly IVIG and we are seeing a tremendous improvement. It has been very bumpy though. We had a relapse 2 weeks ago that was devastating, but we are now progressing very well. At least with my son, these relapses can occur just by being with someone who has the cold or the flu. While strep was our initial trigger, anything can cause an exacerbation. So, I think strengthening the immune system is key.

 

Keep us posted!

 

Elizabeth

[melanie]

After bringing my son to see Dr. Trifiletti, I am very comfortable recommending him to others on this forum. He has a wealth of information about PANDAS, explains the science of it very well, and gave us excelllent suggestions and advice. His bedside manner is great, and my son really liked him too. (Thanks Dr. T!) He has been getting a lot of PANDAS patients, and I am sure he will be seeing many more. He told us that he plans to post on the forum again soon.

Just some background info on my son: He is 13 and has been struggling with PANDAS for almost three years. His OCD started with a strep in January of 2007 (before that there was a history of mild tics associated with strep since age 5), and he became much worse after two vaccines (Chicken Pox and Hep A) several months after the strep in 2007. After the vaccines he really went downhill and had major focusing problems, hyperactivity, pacing, insomnia, facial grimacing, chorea movements, new tics, long zoning out episodes that could often last for minutes at a time, low frustration tolerance and inability to do homework or concentrate in school and eventually rages.The first neurologist who saw him thought it could be PANDAS but suggested SSRIs as the treatment and this made things so extreme that there were multiple psychiatric hospitalizations. He is much more stable now, and he did improve a great deal after we started a gfcf diet and supplements with DAN doctors. He also had plasmapheresis in the summer of 2008 with Dr. Elia at CHOP, which seemed to be partially helpful but there were still many remaining OCD and focusing issues. Before we saw Dr. Elia we had looked into IVIG, but got mixed opinions about whether or not it would be safe for my son because he has low IGA and there was concern about the possibility of an anaphylactic reaction. This summer we saw Dr. Latimer, who felt that PEX would be more efficient and effective through a central line (at CHOP it was done through a periperhal line and they had to stop after it was 70 percent complete because of vein problems.) We also saw Dr. Bouboulis, another excellent doctor, who tested my son and found many significant immune deficiencies including low IGG (total and subclass 4), low IGM, a Selective IGA 2 Deficiency, and he failed 12 out of 14 of the strep pneumoniae titers. Dr. Bouboulis told us if we went ahead and did plasmapheresis at Georgetown, we would most likely need to follow up with monthly IVIG and that he could give him a low IGA version of IVIG to avoid the risk of an allergic reaction. So we decided to move forward with PEX and possibly follow up with IVIG with Dr. Bouboulis if we didn't see good enough results.

Now we are 7 weeks post PEX and we are seeing only small improvements and in the last couple of weeks, I have been starting to worry that PEX was not effective enough. His general mood is a little better and he is less spacey, but I was hoping to see more by now. When we got back from DC I started to realize from reading the forum that he needed to be on a higher dose of zithro, so I started increasing slowly from 250 mg twice a week to 250 mg a day, which is where we are now. I have had to move slowly with this and increase the probiotics because in the past this dose of zithro has been rough on his stomach. I want to work up to 500 mg a day (he is 95 pounds), and Dr. Bouboulis agrees with this idea. I am hoping that his stomach will be able to handle it and the higher dose may show a more dramatic improvement. Our plan has been to just wait and see how much improvement we get from PEX and the increase in antibioitics before moving forward with IVIG with Dr. Bouboulis. I decided to consult with Dr. Trifiletti to get his views about whether or not we are on the right track.

I'm glad I did! Dr. Trifietti really impressed me with his knowledge of PANDAS and had some very good advice. He feels that we are on the right track with increasing the antibiotics and that he does recommend following up with IVIG. He believes that in my son's case, plasmapheresis is not really that helpful because it gets rid of the good antibodies as well as the bad and does not do anything to address the immune deficiencies, which he thinks may very well be the problem underlying the PANDAS. He feels in his case, strep may not be the only trigger and there could be viruses or other things going on (such as non-group A strep) and that these problems can be best addressed through IVIG. He plans to contact Dr. Bouboulis and suggest doing some kind of T cell study to possibly identify what other things might be going on besides strep. (Does anyone have information on what exactly a T cell study is and what they look for?) Also, I asked him about other antibiotics we could try if we don't have enough improvements from a 500 mg day dose of Zithro and he mentioned Clindomycin. (We can't do Augmentin because of a bad hive reaction to Amoxicillin in the past.) Has anyone been on Clindomycin for PANDAS? Any information would be appreciated. I also asked him about the possibility of IV antibioitcs for PANDAS, and he explained that the effects were likely to be just temporary and would not address the immune issues like IVIG. He did try IV antibiotics in one case that he considered to be extreme, and it helped the boy get stable but the effects wore off and the boy didn't get better until he had plasma exchange. One very encouraging piece of news that Dr. Trifilletti told us is that in his experience, kids do get better in time. He has seen many cases over the years, but that they eventually resolve and the kids do get well. I don't believe he has seen a case of PANDAS that did not eventually get better, so this was very uplifting news to hear.

Before this appointment, my husband still had some reservations about moving forward with IVIG and now I think he is fully on board. I plan to follow up with Dr. Bouboulis some time soon about the T cell study and probably setting up monthly IVIG some time soon. I also just went through my son's records from 2008 and found that he did test high for the HHV-6 virus (1:80 with the range being <1:10). I am not exactly sure what this means or if it is just indicative of a past infection but plan to speak to Dr. Trifiletti and/or Dr. Bouboulis about it some time soon.

I am no longer feeling as down and discouraged because my son has not improved enough from PEX. There are other options for him. Since this appointment I am starting to feel hopeful again.

 

Ellen

 

Hi Ellen We see Dr.T also and am taking clindimicin Im feeling good about Dr.T also my son is 15 and not doing to well He has verbal tics and curses whenever he hears people stammer Its driving him crazy and we really need help

Melanie

[fuelforall]

PHEW!

Ellen and Melanie, your cases make me feel lucky!

My nine year old will visit Dr T tomorrow. He seems like a great guy.

He says he takes insurance too.

 

Let you know how it goes. I'm trying to get ahold of this demon while my son is still relatively young.

 

Michael

[EAMom]

I think your son will do great on 500mg/day Azith. and IVIG. It sounds like he really needs the IVIG with his immune deficiencies.

 

My younger dd (non-pandas we hope) was on Clindimycin to try to clear her carrier state 1.5 years ago. She was 5 at the time and she just couldn't take it b/c the liquid tasted sooooo badd! So, we switched to Azith. which worked great (Augmentin didn't work to clear her).

 

Azith. is immune modulating...which I think helps pandas kids greatly. Our Stanford Immunologist thinks this is really a big reason why it's helping our dd so much (vs. just preventing strep, or eliminating intracellular strep).

 

Are you using any Advil?

[nevergiveup]

Ellen, Elizabeth and Melanie,

 

Hi! Have a wonderful Thanksgiving. I will be giving thanks for all of you, who have helped us all by sharing your most intimate struggles. I am also giving thanks for all the new support our children have. Your stories are helping many get help.

 

My dd is currently getting monthly ivig. I think her dose is too low, so I will need to consult some additional docs. She is actually doing well, its just with her autoimmune blood tests ANA and C4 are still showing an autoimmune issue. I have heard, Ellen, about T cell defs but don't quite know yet what they are testing for. Heard Dr. Sleasman at USF with Murphy is looking into this. We are going to USF for an immune consult. I will let you know what they test for. Does Dr. T treat with Abx, steroids, PEX and IVIG?? Thanks, Beth

[Ellen]

EAMom, Dr. Trifiletti asked the same question about whether we were using Advil. I have not tried it yet because of the sensitive stomach issue. Also, I don't know if I read somewhere about extended use of Advil causing stomach ulcers. I'm not sure about that. Have you read anything about that? I would be open to using it sometimes (maybe not every day) if I can get the irritable stomach issues under control.

I'm hoping the increase to 500 mg. of Zithro a day will make a big difference, but I am fairly certain we will have to do IVIG along with it. Do you think it's possible that we will see good results from just increasing the zithro dose? If so, how long does it normally take to see the changes?

 

 

I think your son will do great on 500mg/day Azith. and IVIG. It sounds like he really needs the IVIG with his immune deficiencies.

 

My younger dd (non-pandas we hope) was on Clindimycin to try to clear her carrier state 1.5 years ago. She was 5 at the time and she just couldn't take it b/c the liquid tasted sooooo badd! So, we switched to Azith. which worked great (Augmentin didn't work to clear her).

 

Azith. is immune modulating...which I think helps pandas kids greatly. Our Stanford Immunologist thinks this is really a big reason why it's helping our dd so much (vs. just preventing strep, or eliminating intracellular strep).

 

Are you using any Advil?

[Ellen]

Beth, I am glad to hear that your daughter is doing well with IVIG. What dose is she on now?

Dr. Trifiletti does treat with antibiotics (I didn't ask about steroids) and I believe he plans to get set up with a hospital for IVIG/PEX some time soon. Maybe he will give more details when he posts again.

 

 

Ellen, Elizabeth and Melanie,

 

Hi! Have a wonderful Thanksgiving. I will be giving thanks for all of you, who have helped us all by sharing your most intimate struggles. I am also giving thanks for all the new support our children have. Your stories are helping many get help.

 

My dd is currently getting monthly ivig. I think her dose is too low, so I will need to consult some additional docs. She is actually doing well, its just with her autoimmune blood tests ANA and C4 are still showing an autoimmune issue. I have heard, Ellen, about T cell defs but don't quite know yet what they are testing for. Heard Dr. Sleasman at USF with Murphy is looking into this. We are going to USF for an immune consult. I will let you know what they test for. Does Dr. T treat with Abx, steroids, PEX and IVIG?? Thanks, Beth

[EAMom]

Yes...any NSAID can cause stomach problems.

 

I don't think you should have a problem short term (if you try for a few days) 200-400mg 3-4x daily. Longer term you could go to a lower dose or only 1-2 x daily (vs. 3-4 x daily). Be sure to give with some food.

 

I think you could get a good response with just increasing to 500mg/day Azith. However, my feeling is that your son esp. would really need to IVIG as well b/c of the immune deficiencies.

 

IMO 250mg Azith. 2x weekly is NOTHING esp. for a 95 pounder...maybe enough to prevent strep but not enough to clear intracellular strep or achieve immune modulation/anti-inflammatory dose.

 

IMO you should start to see some changes from the increased Azith. within a couple of weeks...maybe sooner.

[Ellen]

Thanks for the advice. I now believe that we might have seen a more obvious or dramatic improvement from PEX if he had been on a higher dose of Zith just after he finished the treatment and if we ever do this again, I think it makes sense to have him on full strength antibiotics immediately after PEX rather than building up to it. I feel like I am learning everything just a little too late. But maybe others can benefit from this if they plan to do PEX and want to get the best possible results. I think you are right that he will need IVIG to address the immune deficiencies. I'm really hoping that this in addition to the increase in the zithro will help with the OCD and focusing because those are his biggest problems right now. I will keep Advil in mind too.

With Thanksgiving two days away, I have been thinking about how thankful I am for the best thing that happened to me this year, which was finding this forum. Many many thanks to everyone!

 

Ellen

 

Yes...any NSAID can cause stomach problems.

 

I don't think you should have a problem short term (if you try for a few days) 200-400mg 3-4x daily. Longer term you could go to a lower dose or only 1-2 x daily (vs. 3-4 x daily). Be sure to give with some food.

 

I think you could get a good response with just increasing to 500mg/day Azith. However, my feeling is that your son esp. would really need to IVIG as well b/c of the immune deficiencies.

 

IMO 250mg Azith. 2x weekly is NOTHING esp. for a 95 pounder...maybe enough to prevent strep but not enough to clear intracellular strep or achieve immune modulation/anti-inflammatory dose.

 

IMO you should start to see some changes from the increased Azith. within a couple of weeks...maybe sooner.

[faith]

EAMom, Dr. Trifiletti asked the same question about whether we were using Advil. I have not tried it yet because of the sensitive stomach issue. Also, I don't know if I read somewhere about extended use of Advil causing stomach ulcers. I'm not sure about that. Have you read anything about that? I would be open to using it sometimes (maybe not every day) if I can get the irritable stomach issues under control.

I'm hoping the increase to 500 mg. of Zithro a day will make a big difference, but I am fairly certain we will have to do IVIG along with it. Do you think it's possible that we will see good results from just increasing the zithro dose? If so, how long does it normally take to see the changes?

 

 

I think your son will do great on 500mg/day Azith. and IVIG. It sounds like he really needs the IVIG with his immune deficiencies.

 

My younger dd (non-pandas we hope) was on Clindimycin to try to clear her carrier state 1.5 years ago. She was 5 at the time and she just couldn't take it b/c the liquid tasted sooooo badd! So, we switched to Azith. which worked great (Augmentin didn't work to clear her).

 

Azith. is immune modulating...which I think helps pandas kids greatly. Our Stanford Immunologist thinks this is really a big reason why it's helping our dd so much (vs. just preventing strep, or eliminating intracellular strep).

 

Are you using any Advil?

 

We have been to see Dr. T. as well, and I just wanted to point out that Dr. T. only learned about giving advil from the parents he's seen who said they were giving it to try and reduce inflammation. he thinks its okay to do, and found it interesting, but he said he wouldn't have thought of doing that. I think he is familiar with all the modes of treatment, but he gauges it on the severity of the symptoms, and each case is different. I think he likes to go in steps. He gave us azith, but when I asked what happens after I finish the course, he said he wants to see how he does first and then it would probably 250 mg. 2x a week prophalacically. I mentioned that some did not think that was enough, so not sure how to proceed. I feel he likes to start of low and see how it goes. I'm going to do the azith (changing from augmentin which I didn't really feel helped us much) and I guess report to him how it goes, and we'll take it from there. he is much more convenient to get to for us, so follow up appts. won't be too big a deal. He does do the steroids as a treatment as well, but again, I think he gauges it on the severity. I mentioned I was not comfortable with the 30 day that Dr. L. gave, and he said a 5 day course would be fine. right now, I'm going to stick with the Augmentin and see where my son is at. he is mostly tics, his ocd is there, but mild, so I am more focused on the tics. oh and he felt my son had the 'milkmaid' grip, which I thought was interesting, I don't recall Dr. L. doing that one, but she said he didn't see any chorea. so in a way, its interesting if the milkmaid grip has anything to do with chorea movements, which I think it does, because my son's cam k was at 179, so I guess in a way, one would think he would or should have something in the way of chorea. he also does this thing occasionally, like jutting out his arm as if he was going to raise his hand or point to something, which he does point, as he is masking this movement. I wonder if that is considered chorea as well. he doesn't do it constantly like a tic, its once in a while, he'll do it a couple of times and then stop. I tired searching it and I know there is an arm flailing movement,but not sure if it is what I'm seeing.

 

 

Faith

[Debbie1]

Hi Faith,

 

Did Dr. T. tell you what dose he would recommend for a 5 day course? My dd has had two rounds of steroids:

 

1) December 2008 - prescribed by a local neurologist - 7 day course - 60mg per day for 5-7 days (I can't remember now), then a quick taper.

 

2) October 2009 - prescribed by Dr. L. - 28 day course - 30mg week 1, 20mg wk 2, 10 mg week 3, 10 every other day wk 4.

 

In reality, the two were not very different. You end up with approximately the same amount of steroids in your system. Dr. L. said kids usually don't tolerate the higher dose well so she prescribes a lower dose over a longer period.

 

Debbie

[coco]

Hi NeverGiveUp - I know that Dr. B does 1 gram per kilo of weight when doing monthly ivig for my dd. I hope that helps/gives you a reference point.

 

coco

[faith]

Hi Faith,

 

Did Dr. T. tell you what dose he would recommend for a 5 day course? My dd has had two rounds of steroids:

 

1) December 2008 - prescribed by a local neurologist - 7 day course - 60mg per day for 5-7 days (I can't remember now), then a quick taper.

 

2) October 2009 - prescribed by Dr. L. - 28 day course - 30mg week 1, 20mg wk 2, 10 mg week 3, 10 every other day wk 4.

 

In reality, the two were not very different. You end up with approximately the same amount of steroids in your system. Dr. L. said kids usually don't tolerate the higher dose well so she prescribes a lower dose over a longer period.

 

Debbie

 

Debbie,

no, we didn't really discuss the dose, I just said that I was nervous about a 30 day and he said a short term five day would be fine. As I mentioned, I think he likes to take it step by step according to the severity and needs of the child, so we are starting with the change in abx (from a month of augmentin to azith 250 mgs). my son has tics and some of the other issues, but he is functional, in other words, we are not in a crisis mode. After a month or so on the azith, then I will report to him and we'll see what comes next.

 

Faith