NMom

Would love opinions about a few things that may/may not add up to something. My DS (12) had a tonsillectomy about five weeks ago. He had a great recovery and no big post op flare. Over the last two weeks, he has developed two pretty major tics. He had three nighttime accidents in a row (not entirely unusual but he hadn't had one in a long time) and then has been fine. Then this week,he had two daytime incidents of incontinence. I took him to be tested today for a UTI and there was a small amount of protein in his urine but the test was negative for infection. They tested his glucose and it was 99. The nurse didn't really react but also didn't say that was within normal range. She just suggested that we check it again whenever he has bloodwork next time. My gut says something is going on but I'm not sure what. Flare? Growth spurt? Some new and terrible diagnosis that is going to rock our world? I may have a little PANDAS PTSD so am looking for anyone with a level head here that might have seen these symptoms before. It feels like something but I'm not sure what.

We see him on Tuesday and the initial appointment is two hours long and expensive. I'd like some insight into what the appt is like. My son was diagnosed on 2010 and is currently seeing Dr. Rao but it would be nice to have a doctor in Houston. Please PM me to share your experience with Dr. Doctor.

Thanks to everyone who responded. The X-ray today did show a large amount of stool in his intestine so he is definitely constipated. The doctor suggested a cleanse that is very popular with ped. gastro in our area. I agree though that this is not normal and certainly can't continue. I am going to look into the digestive enzymes. It may also be time to consider Lyme treatment. I hate to admit it but I've just been brushing that aside because he's done so well, there are no LLMD's in TX that I know of (we are in Houston) and I hate putting this poor kid through anything else. I think we had a positive Bartonella test at one point as well but then it was negative later so we moved on. He's also had a very high myco lab but no related symptoms during that time. I will also post on Lyme forum. Thanks again to everyone that responded.

First..thank you to everyone out here who continues to post and respond to issues. I don't post often but do watch the forum and often find answers to my questions. A little bit of backstory: my son (now 9) was diagnosed with PANDAS at 6 years of age. He had severe and sudden OCD after a strep infection as well as tics. He's been on Augmentin since June of 2010 and responded very well. We also did extensive ERP therapy and continue to use that during the small upticks that occur whenever he is getting sick. He has had a positive Lyme test (IGENEX) and a negative Lyme (Dr. . We chose not to focus on treating Lyme specifically because he has done so well on the Augmentin. But I mention it now in case maybe it has some bearing on our newest problem. For about the past six months he has had these horrible stomachaches. They were happening about every 3-4 months. He usually wakes up in the middle of the night and is in intense pain. He's shaking, crying and in one case threw up. Then he rushes to the bathroom, has a bowel movement and starts feeling better. Within about a half hour...he's perfectly fine. This has started happening more often although not as intensely. I've taken him to the pediatrician (not a PANDAS believer but at least he doesn't argue with me about it anymore!) and he believes it's constipation - Xrays indicated that as well. It's scary as ###### when it happens though. I've been on the verge of taking him to the ER more than once but it always resolves itself right after he uses the bathroom. I've got him on a priobiotic (Primal Defense) as well as Miralax every day but it continues to happen. Has anyone else had this issue? My biggest fear is that the Augmentin is damaging his stomach somehow and we are just brushing it off as constipation. Am taking him back to the pediatrician today and would appreciate the benefit of anyone else's experience. Any thought about what we should be looking for?

I should have clarified that the original prescription is not through him. When I saw Dr. B in December we still had six months on a year prescription from another doctor. Dr. B did a bunch of labs and agreed that this was the right antibiotic...I just didn't think to ask him to extend our prescription. Not sure if he will do it now based on our labs from Dec...but I'll make an appt for a phone consult and try.

We saw Dr. B in December and I forgot to ask him for a refill on our antibiotics. I've tried emailing him using the address his receptionist gave me but got a very tense response from one of the nurses that they cannot respond via email...but that's how we were told to contact him if we had questions!! I'm wondering if we have the wrong email address (think it went to the infusion center but we have not done IVIG). Does anyone have an email address or alternate way to contact Dr. B?

We did a 40 day steriod taper with my son who was seven last fall. He only weighed about 55 lbs and started out at 30 or 40 mg so I would agree that the first steriod taper for your son might have been dosed too low. In any case...my son definitely got worse before he got better. I would have stopped the steroids mid-course if I could have. He even had two 'roid rages' for lack of a better term and he's never been a kid who had rages. It wasn't until about day 15 that we saw a drastic difference. The last two weeks were like the pre-PANDAS days and it was wonderful. We did not have lasting results and had several fairly serious medical complications with the steroids so probably won't do again unless absolutely necessary but there are others on the forum that do get wonderful, lasting results from steroids...praying that is the case for your son.

Thank you for posting! I have an eight year old son who has been dealing with tics and OCD for almost two years now. Earlier this week he told me...'Mom, I just realized that I'm a boy with tics who still has a normal life.' Broke my heart...he just wants to be normal. I lie awake at night worrying about what his future looks like; will he got to college, will he get married or will he someday be a captive to this illness? It gives me hope to hear a story like yours. Thank you for sharing.

I've been thinking the same thing - is there a point where we try to wean our son off antibiotics? Right now he's on a daily dose of 1000 mg Augmentin XR. I just increased to 1500 mg because we had a major uptick yesterday - not quite sure where that's headed. That's been our routine for almost two years now. We also treat with homeopathic remedies and our homeopath wants us to stop the antibiotics to let the remedies truly work...not sure I'm there yet. I have seen a major difference in terms of how often my son gets sick though. He typically would have several bouts of ear infections and strep in the course of a year - so far we've had some minor upticks and one major episode after diagnosis - so I'm inclined to keep him on for now.

My son has a similar story - fairly mild issues in comparison to some but big enough to affect his life. His initial onset (May 2010) started with tics but progressed quickly into OCD that quickly became overwhelming for all of us. In the process of confirming PANDAS, we started ERP therapy with a child pyschologist who specializes in OCD and ERP therapy. I'm a big believer in ERP now. When my son is in the middle of an exacerbation...the therapy is tough and not as helpful but he has developed skills that help him cope better. When he's stable there is still some residual OCD (has now morphed into intrusive thoughts)and the ERP therapy gives him the tools to deal with it much more effectively. Our doctor is also great at identifying when something is a tic vs OCD. Some of what we thought was OCD intrusive thoughts is actually tied to a tic. She can reassure him in a way that I can't and sometimes he relaxes just because she tells him something he's worried abotu his normal. And sometimes I go to her by myself for advice on how to cope when the OCD is not responding. She was not a believer in PANDAS but she is now! My son just turned 8 and has been doing ERP since he was 6 1/2. I think it has empowered him to deal with his OCD more independently - as much as I'd just like it to all just go away I have to be realistic that it might not be that easy. And he's now able to tell when something is becoming an OCD issue and we start working on it right away. Last summer he told me that he felt the need to keep washing his hands. We had a phone consult with our doctor and developed some ERP 'homework' very quickly and it never took hold as a full OCD ritual. That in itself was worth all the time, money and energy we've spent on therapy.

My son has had two major episodes and both started in April/May (2010 & 2011) and ramped up through the summer. We had HORRIBLE summers and then started coming out of the episodes right about when school started. I know that both times he was exposed to strep but he's being exposed right now in school and it doesn't result in a major episode. So I'm wondering if the approach of summer and the stress that school puts on these kids at the end (even giving them the impression that they might be held back right up until the last report card) is too much for him. I think he gets very anxious when he does not have structure and maybe that causes the OCD to ramp up severely. Not sure and I haven't yet figured out how to head this off...but I'm already dreading April!

The babesia testing was done by Focus Diagnostics in CA but I cannot tell who did the Lyme testing. Dr B pulls his own labs and sends them out to various places for different testing but I just get one big report. My son was tested for babesia microti last year by IGENEX and was negative . Dr. B ran the test for babesia duncani but not for microti...duncani test was positive. I think these are just two different strains of babesia that produce similar symptoms . The report just showed 'absent' or 'present' for each Lyme band and all were absent except 66. His test last Aug thru IGENEX showed positive for bands 41, 58 and 83-93 and band 39 was indeterminate. I had a consulte with a Lyme doctor last Sept who agreed that the test was positive but felt like my son was too young to use the more serious drugs and that the Augmentin he is already on should inadvertently treat the Lyme. The IGENEX tests also showed an equivocal result for b. burgdorferi which I know is also linked to Lyme....maybe I should start posting on the Lyme forum! Lastly...RNMom, you asked about the haemophilus influenza type b result...it was low. It looks like the test measures the level of protection one has to this infection....just based on the description in the lab report. I've been thinking that our next step was an LLMD for awhile but wanted these labs run first. Of course there is no one near us so guess I'll start looking at plane tickets again.

I have not posted here in awhile because we've been holding steady - not perfect but not terrible either. My son still has OCD issues and tics that seem to come and go - right now they are definitely here. But I watch the forum daily and always learn something new from the many of you that have been doing this longer than us. With that in mind...I'm hoping some of you can help me understand our latest test results. Just a bit of background: My son was diagnosed in 2010 and has had two major episodes - both during the summer. He was going to do PEX last fall but his Lyme test came back positive and we were told not to do PEX. We tried steroids which worked but we had a lot of side effects and he immediatly got sick after stopping them and it all came right back. He's done very well since starting school but we still have an uptick in symptoms when he is exposed and he's constantly exposed in school. We use ERP therapy to deal with the OCD and ignore the tics for the most part as they typically seem to ramp up for a few weeks and then disappear. He's on a daily regimen of Augmentin XR. We decided to switch doctors this fall and went to see Dr. B in CT. He did extensive testing and I just received the results. He reviewed them on the phone with me before I had them in front of me and said all looked good - no co-infections including a negative Lyme test. He now runs these tests in his own lab (vs IGENEX) but said that his tests have the same level of sensitivity as IGENEX. It does look like he covered all the Lyme bands (vs just the few that the CDC test covers). But there were a few other abnormalities in the tests that he didn't mention on the phone. So here are my questions: * Has anyone else had a high BUN/Creatinine Ratio? It appears to be an indication of kidney function and both of the individual results are within the normal range but the ratio is very high. * There was a test called the Anti-Streptolysin O Screen reflex titer and it just says Positive...what is that? It's not the ASO titer - that's on another line. It was also high but that's not surprising. * The only Lyme band that came back as positive was IGM p66. Is that a significant band? The test has it starred and says the test must have 2 bands exclusive of the starred bands to be positive. Can Lyme 'disappear' on the test if it has been treated? * The Haemophilus Influenza Type B AB, IgG came back as out of range. What does that indicates? * C1q, serum was out of range. No idea what that is? * WA1 Antibody detected. Test says this is Babesia duncani which I think is linked to Lyme? The back page of results was a summary of the abnormal results but only listed some of these items...did not mention the C1q or the Wa1 test. Any insight is much appreciated. I think I'm going to schedule another phone consult with Dr. B to review these results but I'd like to be armed with the right questions first!

sorry for the multiple responses...computer got stuck and I must have clicked post multiple times! One other thing I should add is that I would suggest having your child tested for Lyme. Steroids are not recommended for children with positive Lyme tests and it might be a useful data point. I definitely wish I'd had those results prior to starting steroids.

I think the important thing to understand is what you are trying to accomplish with the steroids. We tried a longer course (almost 40 days)at about the same initial dosage for my son who weighed about 45 lbs at the time. The first 15 days were very bad...he had rages which has never been a PANDAS symptom for him. His anger, anxiety and OCD all got worse and he had some serious physical symptoms that worried us and his pediatrician. Then suddenly everything got better and the last part of the taper was great in terms of the PANDAS symptoms (physical issues were still a concern). However, in the middle of this we found out that his Lyme test was positive and just as we ended the taper he got sick and everything came right back. He also gained a LOT of weight (people who saw him were visibly shocked) which may seem like a small thing compared to a PANDAS crisis but led to a whole new OCD concern and a lot of anxiety on his part about how 'fat' he had gotten. He still worries that he's fat even though he's lost all that weight. We did this because we were about to undergo plasmapheresis and were told this was a required first step but I think there are a lot of potential issues with high-dose steroids that you should understand before using them. We were unable to do the PEX after he was diagnosed with Lyme anyway so for us it was not a great experience. My husband and I agreed that we would never use steroids again except in an extreme emergency. However, my son responds well to antibiotics so I can understand why people choose to use them if their children respond well to steroids. My advice would be to make sure you have a local doctor on board to monitor your child and to talk to Dr. B about what he's trying to accomplish. Is this diagnostic or is it to stop a downward spiral? Ask about the potential side effects and then weigh the pros and cons. If your child is in a bad place...steroids might be worthwhile. We also see Dr. B and I think he's a smart and capable doctor and I would trust him to listen to your concerns.

I think the important thing to understand is what you are trying to accomplish with the steroids. We tried a longer course (almost 40 days)at about the same initial dosage for my son who weighed about 45 lbs at the time. The first 15 days were very bad...he had rages which has never been a PANDAS symptom for him. His anger, anxiety and OCD all got worse and he had some serious physical symptoms that worried us and his pediatrician. Then suddenly everything got better and the last part of the taper was great in terms of the PANDAS symptoms (physical issues were still a concern). However, in the middle of this we found out that his Lyme test was positive and just as we ended the taper he got sick and everything came right back. He also gained a LOT of weight (people who saw him were visibly shocked) which may seem like a small thing compared to a PANDAS crisis but led to a whole new OCD concern and a lot of anxiety on his part about how 'fat' he had gotten. He still worries that he's fat even though he's lost all that weight. We did this because we were about to undergo plasmapheresis and were told this was a required first step but I think there are a lot of potential issues with high-dose steroids that you should understand before using them. We were unable to do the PEX after he was diagnosed with Lyme anyway so for us it was not a great experience. My husband and I agreed that we would never use steroids again except in an extreme emergency. However, my son responds well to antibiotics so I can understand why people choose to use them if their children respond well to steroids. My advice would be to make sure you have a local doctor on board to monitor your child and to talk to Dr. B about what he's trying to accomplish. Is this diagnostic or is it to stop a downward spiral? Ask about the potential side effects and then weigh the pros and cons. If your child is in a bad place...steroids might be worthwhile. We also see Dr. B and I think he's a smart and capable doctor and I would trust him to listen to your concerns.

My son was diagnosed 18 mo ago and he probably weighed around 45-50 lbs. We started on 1800 mgs of augmentin ES which is just the liquid form of XR. He now weighs around 59 lbs and regularly takes 1000mg daily of the pill form (augmentin xr) but I will push him up to treatment dose when I see issues cropping up....that's about 2000 mgs. There are certainly people who use higher doses ...these are regular treatment doses that our pediatrician would prescribe. Some people believe in high dose antibiotics .. Not sure what dosage that would be. Don't give up hope though. It does sometimes take some time. My best advice would be to get to a PANDAS doc if possible.

I think this is the same stress most of us feel every day. For me when I feel like I can't process all the information I take a break. I've learned that there is a big difference between doing nothing and standing still for a moment. I watch bad reality tv, drink a glass of wine, etc...whatever it takes for me to stop thinking about all this medical stuff for a few minutes. And I pray a lot. I think my mind keeps working in the background but a small 'break' sometimes gives me clarity...not that I suddenly know the right answer but it sometimes allows me enough distance to form a plan for next steps. It's very easy for me to end up in 'analysis paralysis'. I get to the point where I've thought through all the options so many times that I'm just turning in circles. So I take a break and then I choose something. Just one step to start moving forward. We are fairly conservative in our treatment plans but I think that's a personal choice and completely depends on how your child is doing. Right now we are pursuing other antibiotic therapies and testing for co-infections before IVIG/PEX - even though our doctor has recommended IVIG/PEX. We already have a positive Lyme test. We've done steriods (they helped but also caused a lot of other issues) and do CBT regularly (has been extremely helpful!). We tried SSRIs on the recommendation of two doctors and that made things much worse. We've also use homeopathic remedies and I'm not yet sure whether they are helping...just too early to tell. My point is that I make the 'wrong' calls sometimes and then I just have move on to the next thing. It's certainly not the way I wish things worked but it is what it is. I also worry that I'm just choosing the easiest option sometimes or going to the specialist that I think will prescribe the drugs I want to try, etc. But I believe that deep down I want those things because I really believe that they might help my son. And wouldn't it be awesome if the 'easy' treatments really did work! As long as it doesn't cause harm...I'm willing to try it.

I didn't realize you were there now! I hope all goes well. Call me when you can to catch up.

We are also traveling to see Dr. B in December from the DC area. I would be interested to know what labs he orders prior to the visit. His nurse told me that he wouldn't order any until he saw my son. But if we could get them drawn before and have the results...it will make the visit much more informative. Would you let me know what labs Dr. B suggests you draw?

I'm so happy to hear that your daughter is doing well! It's always great to hear good stories. We are embarking on the Lyme/co-infections route right now. I'd love to know who you take your daughter to see and if you like him/her? We live in Houston so will be traveling no matter where we go. Feel free to PM me. Thanks and I pray for continued improvement/success for your daughter.

We are just beginning our journey into the world of Lyme...got our positive Lyme test a few weeks ago. We live in TX and as far as I know there are no LLMDS here. The upside of that is that we will have to travel so could go anywhere. It would be easiest to go to the east coast but not mandatory. I'd love some suggestions on LLMDs based on personal experience. Right now I'm leaning towards dr. Moorecroft in CT. Dr. jemsek in DC would be easier for me to get to but don't know anything about him. Please PM me if you have any thoughts...good or bad...on LLMDs. Thanks!

Bees - Do you mind me asking what Dr. B's abx protocol is for your child? I'm considering heading to see him next as I think we need to do some more testing to understand what else might be lurking under the surface.

If nothing else..the forum can be good for a laugh sometimes. Thanks PhillyPA! I needed a laugh today...and you make a good point.

We definitely fall into the category of PANDAS plus co-infections. We have positive Lyme test and are still looking at other co-infections. And I have every intention of staying on this forum and on the Lyme forum because both have gotten me through some pretty rough patches. I've certainly been on the receiving end of a few heated and very strongly worded responses. I assume they are made with the best of intentions but they can sometimes be frightening. I try to take them with a grain of salt and remember that when I'm in crisis mode I tend to be pretty intense as well. More times than not I've been able to pull out something from each post that helped. I don't claim to be in the middle of all this - not even sure what post got heated- but I'd hate to see anyone feel like they cannot come here for help. I certainly intend to be here for as long as it takes to get my son well. Hope everyone else feels the same.