bsimon3

I just heard about the Advanced Labs test from Dr T today as well. He mentioned that is viewed as the "Gold Standard" by East coast LLMDs. Thanks for the suggestions for the other tests. I was on top of asking for the MTHFR from reading other threads, but had missed the KPU and HLA-DR. It's hard to get my arms around it all. Many thanks for the help.

Thank you for your reply. Dr T did order test for Bartonella, Babesia, and Ehrlichia titers which we plan to have done through Labcorp. What is 'an atypical, non-EM rash'? DS had hives as part of his illness that kicked off PANDAS/PANS. Very happy for you and your DD that ticcing is resolved!

Hello, We are looking into Lyme as a possible cause for my DS9's illness. History in brief: In Feb '08, DS9 suddenly presented with motor and verbal tics about 1 week after illness (intermittent high fevers, fatigue/malaise, sore throat). At that time, DS was negative for strep via swap and titers. In the ensuing years, symptoms waxed and waned in the typical PANDAS/PANS pattern. DS has been treated for strep 4 times total. Mild OCD symptoms emerged in 2009 and continue along with the tics. PANDAS/PANS symptoms flare with any type of illness, not just strep. Finally got diagnosis and treatment for PANDAS/PANS from Dr. T in Sept '11. Among the findings from the Sept '11 testing ordered by Dr. T (completed at Labcorp): no elevated strep titers, elevated mycoplasma IGG of 321 (ref positive >320), "Present" Western Blot IGM P23 Ab (no other bands present on either IGG or IGM), low neutrophils 36 (ref: 40-70), high lymphs 54 (ref: 20-47), Ferritin low at 22 (ref: 30-400). Based on these results, Dr T felt that DS suffered from chronic mycoP infection and in Sept 2011 DS started Biaxin while continuing on Cephalexin. DS improved slightly but not satisfactorily. In Nov '11, DS switched to Augmentin and did a 28 day steroid taper. DS improved much with this protocol, but tics and OCD persist. DS's improvement has plateued. Thus, we have decided to explore Lyme. [edit: We are not aware of DS ever having been bitten by a tick. DS has had a few round rashes that went away with either anti-fungals (ringworm) or topical steroid cream (dermatologist said that one was capilaritis).] We are working with an LLMD who ordered IGenex WB IGM and IGG. When I asked him about running the Complete Lyme Panel (6050) instead he said that he didn't order it since so many of his PANDAS parents are not willing to take their kids off antibiotics for so long (IGenex told me DS needs to be off ABX for 3 weeks when I called them this week) and that the cost of that test is so much higher (WB IGG and IGM are $200 total, and the Complete Lyme Panel is $475). But he did say to "go for it" if we were willing to step away from the ABX. So, my questions are: - Is it worth it to do the Complete Lyme Panel now? - For those who have taken your kids off ABX to do the Complete Panel, did you stop cold turkey or taper down? - Do you have any other advice to impart about getting an accurate answer to the Lyme question? Thanks all!

Colleendonny and tpotter, I would love it if you PM'ed me your lists. I am happy to share our test list back if it would be helpful. Thanks!

Thanks for the update, 1tiredmama. So glad your ds is getting some relief! I am happy to have helped by sharing our experience -- I was trying to 'pay it forward' after getting so much helpful advice and encouragement from others on this forum!

For whatever it's worth, here's my 2 cents on trying the steroid: in the absence of the Cunningham or any other test for PANDAS, a trial with steroids is the only real way we have of determining if we are dealing with PANDAS/PANS or not. I see the risk as relatively low and worthwhile to gain valuable information about the causes of our child's illness. I'd love to hear about how your child does the the coming week. And I hope you get some dreamless sleep. I've been there, can totally relate!

It is my understanding as well that steroids can make tics worse for with Tourettes. However, I would wait another week or so before deciding if the steroid is making things better or worse. I recommend journaling daily measures of symptoms if you aren't already doing that. With PANDAS tics (at least in our experience) there are day to day fluctuations and what you observe today could simply be chalked up to that. My ds trended overall as improving on the steroid over the course of a week or so AFTER the 5 day burst was complete (with the usual daily ups & downs, but we kept our eye on the overall trend). The effects were not lasting however. A couple of weeks later, we started a 3 week taper, and found MUCH improvement from it. It seems that it more effectively calmed his immune system down. We've been able to maintain a state of relative calm over the last 3 months via daily antibiotics and as-needed ibuprofen (we give the ibuprofen when we sense an upswing in tics). He went from very noticeable, nearly constant ticcing to a state where it's quite likely the tics are not discernible to the casual observer. The next time we encounter an exacerbation, we wouldn't hesitate to try another 3 week taper. More info than you asked for, I know - just thought I'd share in case it could help someone!

http://drdrew.blogs.cnn.com/

Kiera, if it's not too much trouble, could you post and let us know what you find out? We have been wondering about this as well. Thanks so much.

(Please excuse me if I double post this reply -- I think my first attempt at a reply failed.) Thanks for your help all. Writergal, what type of allergy testing did you do -- skin prick or blood draw? The one allergist (as well as our ped) we consulted with doesn't support (or do) blood testing for allergies, (IgG I believe it is called) citing reasons of unreliability and false positives. If you did the blood test, what type of a doc ordered the tests for you and helped you interpret them? I'd be grateful if you PMed me the name of your doctor. Bigmighty, so did you see an almost immediate reaction to the corn when he was younger then? I am under the impression that it could take days to react to a food, but perhaps I am wrong about that. I wish this all felt like more science and less mystery to me. I like the idea about testing and observing - idea could be very useful with the long holiday break coming up in December.

I have suspected for a while that corn exacerbates symptoms in my DS9. We have virtually eliminated corn and foods containing corn here at home (although sometimes corn starch, corn meal, xantham gum, HFCS via Halloween candy, etc. makes an appearance). It doesn't seem to be making any difference. However, I know that out in the world of school, group gatherings, etc. he is likely still getting plenty of corn. So my question for you is this: is there any reliable test that will tell me one way or the other if corn is in fact exacerbating my son's symptoms? Thank you kindly for your help.

Have you considered starting her on an antibiotic while you wait for the tests and upcoming appointments? If it is a bacterial infection such as strep or mycoplasma causing this, perhaps abx would be able to stop it in its tracks.

Hi all, just wanted to post a little update and say thanks again to all who have responded so far with information and encouragement. My son has continued on the cephalexin (same treatment dose since 9/16/11) and Biaxin (aka clarithromycin; same treatment dose since 10/4/2011). We have seen the sawtooth type improvement described by some here -- some days of gradual improvement followed by setbacks and so on. The dark circles have resolved. He is still not anywhere close to tic-free however and so during our consultation with Dr T yesterday we agreed on a 5-day course of steroids (Prednisolone 15 MG/5ml; 2 tsp each morning for a 66 lb boy). We started it this morning and Dr T said that if it is going to have an effect, we should see some improvement in as little as a few days or within 2 weeks at the longest. It will be a temporary reprieve at best (2 weeks minimum to 2 months max), not a cure of course, but it will give us valuable information. If he gets better, then it is very likely that the 3 doctors who believe he has PANDAS are correct and he actually does have PANDAS/PANS and it would be time to consider trying a different antibiotic, having Dr C’s CT-PET scan done (not a treatment but only more information), possibly tonsillectomy, and possibly IVIG treatment. If he doesn’t get better, then he likely does not have PANDAS/PANS and it would be time to consider an EEG to rule out partial complex seizures as the likely first action. We just have to take it a day at a time. I welcome any helpful pointers you have here -- steroids are something new to us -- on the steroids or anything else you care to share about this. Thanks. As an aside, can I just say how wonderful it has been working with Dr T? We have found him to be accessible, very responsive to phone calls and email. Heck, half the time when I call his office, he is the person who answers the phone, even on the weekends. We are just not accustomed to such personal attention from any doctor. He's been a godsend.

Before now, he had only ever been on a treatment course of amoxy or cephalexin. He has had times where his tics resolved or were only so slight such that anybody outside the family wouldn't even be aware of them. Since this all started in 2008, we saw a worsening of tics and other PANDAS/PITAND symptoms the times he tested positive for strep in the office (as well as during other times of illness) and then an improvement while on the antibiotics. Amox worked the first time to clear the strep and the other 4 times we had to use cephalexin to clear up the strep throat. He's now been on the cephalexin for 3.5 weeks and it doesn't seem to be helping the tics, etc. And of course now we are on Day 9 of the clarithromycin as well.

Thanks NVAmom for the helpful and encouraging reply. We also track his particular list of symptoms. We use a spreadsheet and since starting it in August, have found that it provides perspective and a more accurate look at how things are trending. It's not perfect, but it beats having to rely on memory alone!

LLM, thank you for all the information. This gives me a lot to look into as I must admit my experience with the types of treatments for detoxification you mentioned is quite limited and therefore out of my comfort zone. I will read up on all of that however. If you have a favorite resource to refer me to, I'd love to hear about it. Your post has me wondering about other signs of toxic load on the body. In the past when he seemed so sick from time to time and we didn't know what was wrong, he had telling dark circles under the eyes -- we just didn't know what they were telling us! We've seen the dark circles come & go again over this past week while on the Biaxin. Do you know if that has anything to do with any of this? As far as the minerals/vitamins you mentioned, the only one we have had measured so far is D and his is 61.3 (optimal range 32-100 according to LabCorp). We do supplement him with D3, B6, and magnesium among others. Still, I like your idea about measuring the immune-related vitamins & minerals and will request adding that to his inevitable next round of blood work.

Thanks dcmom, this is very helpful. Am I understanding correctly that in your case, you did not do long treatments of ABX but instead were dealing with acute infections with a treatment course of 10 days or so? Then when that was over and finished only then moved on to a steroid burst? I don't know much about steroids yet... does anyone use steroids and ABX at the same time? Thanks in advance.

Since this all started in 2008, we saw a worsening of tics and other PANDAS/PITAND symptoms the times he tested positive for strep in the office (as well as during other times of illness) and then an improvement while on the antibiotics. Amox worked the first time to clear the strep and the other 4 times we had to use cephalexin to clear up the strep throat. He's now been on the cephalexin for 3.5 weeks and it doesn't seem to be helping the tics, etc. And of course now we are on Day 9 of the clarithromycin as well.

Our son developed sudden onset of tics and mild OCD in Feb 08. We have been messing around with one doc after another and one wild goose chase after another ever since trying to solve the mystery. We finally connected with Dr T recently and learned through blood tests he ordered that our son is negative for strep titers (in spite of 5 strep infections diagnosed and treated using the rapid swab, most recently in May 2011). We also learned that his Mycoplasma Pneumoniae IGG is positive/high at 321. Tests were done at LabCorp. Dr T believes our son is a low strep responder (due to the lack of positive titers) and that he has a chronic mycoplasma pneumoniae (MP) infection. Our son is now on two different ABX: - He takes Cephalexin (1000 mg daily) because he responded so well to treatment doses of it during acute strep infections in the past. He's been on the Cephalexin for about 3.5 weeks and I don't think it's made much of a difference this time. - Dr T also prescribed Clarythromycin (i.e., Biaxin) (500 mg daily) for the MP. He's been on it for for 8 days now. Concerning the Biaxin, we thought we were starting to see some lessening in the severity and quantity of the tics on day 3 and 4. Day 5 we saw a small setback. Day 6 was a mixed bag. On day 7 and 8 (today) we have had still more setbacks. We aren't *quite* back to where we started, but it is a discouraging trend. My question is this: for those who have used ABX (Azithromycin, Clarithromycin, ...) to treat positive Mycoplasma Pneumonia IGG, how long did it take for you to see any real level of improvement? I don't want to give up too soon, but I also don't want to waste any more time if we are on another dead-end path. Thank you for your help.

We use Culturelle for Kids and haven't had any diarrhea troubles so far after weeks on Cephalexin and Clarithromycin. It's a powder that you can mix into food or drink (milk, juice, applesauce...). We find that milk works really well. It doesn't have a taste and if you mix it in gradually it will not clump up. Another that I have heard about people using is Florastor. I don't have as much experience with that one, but it also mixes in pretty easily (open up the capsule or use the kids' fruit flavored powder) and has a subtle yeasty smell similar to the way sourdough bread smells. And at HTsMom said, be sure to give the probiotic spaced far apart from when your child takes the abx. What did your ped say? I had another thought for you concerning the diarrhea. If you haven't already, try giving him binding foods such as bananas and white rice. I myself have used rice water to end diarrhea I had from being on Zithromycin for strep. It helped. Instructions for making it are near the bottom of this web page: http://www.umm.edu/altmed/articles/diarrhea-000050.htm Good luck.

We use Culturelle for Kids and haven't had any diarrhea troubles so far after weeks on Cephalexin and Clarithromycin. It's a powder that you can mix into food or drink (milk, juice, applesauce...). We find that milk works really well. It doesn't have a taste and if you mix it in gradually it will not clump up. Another that I have heard about people using is Florastor. I don't have as much experience with that one, but it also mixes in pretty easily (open up the capsule or use the kids' fruit flavored powder) and has a subtle yeasty smell similar to the way sourdough bread smells. And at HTsMom said, be sure to give the probiotic spaced far apart from when your child takes the abx.

Hello -- sorry we had to meet this way, but it's somehow reassuring to know there's someone else going through what we're going through at the same time. If you haven't yet listed to this VoiceAmerica interview with Dr. T, here is the link. I found it to be a good overview of his outlook and the approach we can expect him to take. http://www.voiceamerica.com/episode/44551/not-so-black-and-white-the-many-faces-of-pandas-with-dr-rosario-trifiletti-and-lynn-johnson Beth

http://www.voiceamerica.com/episode/44551/not-so-black-and-white-the-many-faces-of-pandas-with-dr-rosario-trifiletti-and-lynn-johnson Here you go. Good luck, there is light at the end of this tunnel! Thanks a bunch! We have our first consult with him tomorrow AM and this will be very useful to listen to beforehand. Beth

Hi All, We have our first consult with Dr. T tomorrow morning. He returned our call today -- a Saturday -- and already spent about a half hour on the phone with us. Amazing. Even more amazing, he offered to conduct our first consult tomorrow morning! So, we are scrambling tonight trying to make sure we get all our questions together and fax over all our test records and a summary of our son's medical history. Those who have worked with Dr. T, do you have any suggestions in how to make the most of our time with him? Questions to ask? Thanks a bunch, Beth

Hi everyone, I know this thread is ancient but we are really interested in finding the VoiceAmerica interview featuring Dr T (found the one with Dr K using the link above - thanks!). Is anyone able to provide the link? Thanks a bunch. This is a wonderful group of people and a lifeline resource for us. Beth