Charlotte Mom

Who is your PANDAS doc?

Does anyone know the difference between these tests and the test Dr Cunningham does?

What about the MTHFR polymorphism? This puts you at risk for heart disease and inhibits your ability to methylate - right? Could it be that individuals with MTHFR polymorphisms are at higher risk for hear abnormalities and higher risk for immune issues - can't fight lyme, strep, mycoplasma effectively, so these horrible diseases begin to attack the brain and case psychiatric issues?

I am noticing a trend. When describing your child's past or current antibiotic use, I have noticed that many have stated that ...."we thought he/she was allergic to penicillin, so we......" We were told our daughter was having an allergic reaction to penicillin when she was three and got a rash while she was sick. It now seems that rash was more likely due to her being sick (RF) than the penicillin. She is not allergic to penicillin. She just got a bicillin shot three weeks ago and no issues. What if all this time, she never was allergic to penicillin and all this time avoiding penicillin just kept her from truly being able to get rid of her strep completely? ... allowing her body to go into overdrive trying to get rid of it ... and causing the PANDAS? What if penicillin is actually what is needed to get rid of the strep entirely? How many of you have been told your child was allergic to Penicillin at some point?

Dr T, I was surprised to see EBV. My daughter tested positive for Hashimotos and I know EBV can also affect Lyme tests. Our whole family tested positive for Lyme. My tow daughters were tested wtih Cunningham and their CamKinese are 168 and 154. I am dealing with so many things my head is spinning. I had not heard about EBV and PANDAS. How do I pursue this - what tests do I need? Could it all come together under that?

My dd11 was diagnosed with PANDAS, we have been treating her for PANDAS. She has very severe OCD. In the meantime, our family in general was suspect for Lyme and I have been growing suspicious of my 8 year old daughter and PANDAS - germ issues emerging, touch, light and sound sensitivity, starting to looser her temper a lot - and over the top. Thus we have run quite a few tests, and here is what we found: My husband is IgG positive for Lyme (Igenex Western Blot); My son and I are both IgM positive. All three of us have positive band 41(IgG and IgM). My two girls were "borderline" for lyme (both IgG and IGM positive band 41). Here is the data I have for them on Lyme and Strep: dd11 ASO: 129 AntiDnase: 181 CamKinese: 168 (tested after 1 IVIG) IgG positive Lyme bands: 31 IND, 34 IND, 41++, all others negative (tested after 1 IVIG) IgM positive Lyme bands: 34 IND, 41+, 58+, 83-93 IND, all others negative (tested after 1 IVIG) *Has had Pnemonia three times, Strep and Scarlet Fever, Chronic URIs, Sinus Infections, Tubes in ears. dd8 ASO: 188 AntiDnase: 163 CamKinese: 154 IgG positive Lyme bands: 41++, all others negative IgM positive Lyme bands: 41++ and 39 IND, all others negative *Has had Chronic URIs, Strep, Sinus Infections, Tubes in ears I would LOVE your opinion on what all this means!! Rght now I am feeling a bit overwhelmed as we are treating the whole family for Lyme and dd11 for Lyme and PANDAS. Could Lyme and Strep both trigger our bodies to create these antibodies that attack our brains, thyroid, and hearts? Isn't it possible that some kids are exposed to both and that is why IVIG and "strep" antibiotics work so well for one and not another? ...that there is a group of kids out there with multiple infections and you have to treat both infections to get them well? Could the Lyme test come back positive if you have mycoplasma or strep - is there something else we don't know about causing band 41 to be positive? Thank you Dr T for continuing to share with us and solicit our information! You are an invaluable resource. Your time, interest and committment is a gift from God. I thank Him everyday for people like you who are willing to help us!!!!

Avoid all of those and sleep will improve?

How does taking antibiotics affect these scores? Does anyone know. I assume the antibodies decrease but does anyone know the timeframe for that?

I know this is so frustrating - I feel your pain. We too are doing every test we can to build the case to keep us on track with doctors. I agree with Buster and others that you should get this testing done. Lyme is very serious. We have started to pursue Lyme treatments, becasue it is impossible to completely rule out - even with a negative test (although we are awaiting the Igenetics test results) and if our DD has Lyme then the PANDAS treatments can make them worse (steroids) or be like throwing a glass of water in the ocean (IVIG). From what I understand (and we are new at this) very strong long term antibiotics are the only way to cure Lyme. You will know you are dealing wtih Lyme if when you start the antibiotic treatments you get the exacerbation of symptoms called a Herxeimer Reaction. I am glad you are pursuing the Lyme avenue as well. Good luck and Please, Please, Please do not leave the forum...even if your child ends up with different issues, we can all benefit from your experience. There may be others of us whose kids have co-morbidities (they may explain why treatments for some don't work for others) or that are even on the wrong path. We would all rather know than beat our heads down a path with "no returns." As dissapointed as you are to still have unanswered and now even more unanswered questions, you are moving forward on your journey. I know your son is frustrated.... my daughter practically refuses to go to doctors anymore. I have started to have her see someone - not for ERP or anything... just someone to talk to about how she feels about this frustrating debilitating path she is on. The person she see's is just for her - I don't go in... it's not another doctor appointment that Mom is dragging me to, but rather her appointment, her time wtih this person she actually really likes and feels like understands her. the doctor has done wonders with helping her understand that it's not her fault she hasn't been able to get well... and to understand how there could be so many doctors out there that just don't understand how to help her -which is a scary feeling for a kid! Hang in there!! I do have some questions for you and Buster. We have been told to do a sleep study on our daughter - we did the sleep deprived and were told no we need the overnight one.....I hadn't heard about three days... I am curious - you mentioned three days of EEG... what is this? Buster, you mentioned MRI for ADEM, checked for demylination and functional MRI. I have not heard of these. When would one want to get these and where and how would one check for these? Worried Dad (I believe) mentions PET scan. What is the difference between PET scan and MRI? Does anyone know?

who is Dr B? I will be curious to see what Dr T says about Lyme. Did you see his write up that he posted for us? He talks about Lyme and PANDs. Buster did a chart on it. There is something to this Lyme and PANDs for the kids who are not slam dunks to 'fix" I think... whether it's causal or a co-morbidity...

My dd12 recently had a positive lyme test. We believe she has PANDAS and lyme since her lyme results indicate a recent infection, but she has had tics on and off for several years, many positive throat cultures, elevated titers, and exacerbations which have correlated with strep exposure. It would explain why, though, she has been unable to get over her most recent exacerbation which began in June 2009. She was given 6 weeks of zithromax with initial improvement, but then a backslide with a cold. She was recently switched to Omnicef. If that doesn't help, I've been told IV antibiotics may be in her not so distant future as well as IVIG (although insurance doesn't cover for lyme either). Who is your doctor who is helping you with the Lyme and the PANDAS - is it the same doc?

Wow...I've not heard of taking both at the same time. Are you seeing any significant results? My dd is taking them under the direction of Dr. T. She is improving slowly, but surely. The difference between today and two months ago is astounding, yet she still has a ways to go. It is definitely a sawtoothed recovery. Each time her immune system is stressed she backslides for a few days, though never as bad as she was this fall. Advil is still helping a LOT, as I found out when she did a steroid burst and I stopped the Advil. Got to run. anything else you want to know, just ask. Angela Is he thinking Lyme might be causing the PANDAS? I think the high doses of multiple antibiotics is typical of a Lyme treatment. Did your dd get an IVIG? How much Advil is she getting and how often. I gave my daughter 400mg of Advil and wham what a difference. I did this twice then the third and fourth time didn't seem to work, so I stopped. Is that just temporary relief... works initially and then stops?

What did Faith's post say?

Can they tell if there is strep in the adnoids after they take them out?

My daughter is pretty much the same story as your son - including the rash. We are going to MD to see Dr Beals and Dr Jones. My cousin sees these two docs and says they are great. It is interesting that your sone received 250mg Azithrimycn 1x/day for Lyme - - that is what my daughter is receiving now for PANDAS post-IVIG. It has been five weeks and we have seen quite a saw-tooth recovery - with a lot of teeth! How long did he take the Azith and Ripramin before you stopped it? Sounds like he was off them for quite awhile. I have heard that when treating lyme you can get a whole lot sicker initially and that is how you know the treatment is working -its killing the infection- - called die-off. What neuroligist are you seeing? Does this person work with Dr Latimer? Maybe while we are up there we should see him to?!

You may want to start by understanding where your child may be defficient. There is a lab call Spectracell where you can get MicroNutrient Testing done - they look at your Vitamins, Amino Acids, Metabolics, Fatty Acids, Minerals, Carbohydrate Metabolism, and Antioxidants at the molecular level... how much of this is actually absorbed into your cells - not what is floating around in your systme. I did this for myself and my two daughters and it was very interesting and informative to see what we each uniquely needed. Then I pulled together a supplement plan for all of us that addressed each of our issues - I didn't want to have three different plans, and I was able to do this with the following plan: Country Life Super 10 Antioxidant (gave us the Vitamin A, C, E Zinc, Selenium and NAC we needed among other things...)... also good is the Vitamin Store Super 10 Antioxidant - gives you more vitamin B-12, but less NAC... so it depends what you need - but both look good. Pioneer Chewable Calcium and Magnesium Source Naturals Co Q 10 Lipoic Acid Nature's Plus Choline Sustained Release Nutramax Omega Mint Purified Fish Oil (They like this, but I am also gong to have them try Learning Factors Balanced Omega 3 (extreme Peach Flavor) because it has the borage and GLA as well) Animal Parade Vitamin D3 Chewables (I give the 2) Renew Life Ultimate Flora I hope this helps you. It took me a week to get this all sorted out (after I had the SpectraCell Results)- so I feel your pain! I tried to minimze the number of pills they had to swallow and include as many chewables as I could find! I don't necessarily know that anyone of these in particular helps TS... just that this helps my kids in the areas where they have deficits and that helps the immune systemn general. You can buy these online at the Viamin Shoppe and get printouts of their ingredients online. I did that and then showed my doctor the ingredients to be sure there wasn't a risk of them getting too much of anything. Both my daughters doctors approved this mix. FYI, you or your doctor can order the SpectraCell Laboritories test at 800-227-5227

I am talking with my cousin a lot about this sort of thing. Her family had Lyme - one of her sons was very severe, but they all had it. THe symptoms he displayed very much resembled the PANDAS symptoms. They Lyme symptoms are very familiar. Bartonella and Babesia apparently are worse than having Lyme - so yes, I think you should see a lyme specialist and have him treated for lyme. I am looking at this now.... as I am beginning to suspect that Lyme, not strep, are at the root of our problem. The treatments for Lyme are more agressive, so even if Lyme wasn't at the root, I am thinking you could kill two birds wtih one stone. It is VERY hard to find a Lyme expert in this country. Most doctors who treat lyme are black-balled from the insurance companies (who don't want to pay for these expensive treatments) and so they report the docs to the state medical boards who then have to investigate them. It's a pretty ugly scene. If you need a doctor name, I am getting some from my cousin. Also, my cousin suggested that I read the book "Cure Unknown" and watch the movie "Under Our Skin." I just ordered the book on-line (none of my local bookstores had it) and I also just ordered the movie, which you can get at www.underourskin.com Curious - has anyone read this book or seen this movie? For those considering testing their child, FYI the standard tests DO NOT WORK. They may detect Lyme for some, but not reliable. Also you don't want just the result positive or negative - you need the levels/bands or something like that. The best test for Lyme cost $200 - you order it from Ingenectics - you want the IgG and the IgM. They also have Bartonella and Babesia test, but they are more expensive and from what I understand these are best diagnosed with symptoms, becasue even the Igenectics test isn't good enough to detect these reliably.... meaning you could test negative and still have it. Igenectics number is 800-832-3200. I ordered mine and we are tesing my whole family next week. Anyone else currently seeking Lyme treatements?

Does anyone have a child who was treated with IVIG and saw improvement after a month? after six weeks? Or did everyone see the improvement within a month? We are five weeks post IVIG and still waiting. I am just trying to get a sesne (and possibly) encouragement from others who saw improvement after this amount of time. Or is it likely we are on the "need another IVIG" path. If there is someone who saw delayed improvement, did the doctor make an antibiotic change or just keep things status quo for the entire time? Thanks to everyone for sharing your information and the wonderful support this forum provides!

I think it's possible that OCD is a symptom not a diagnosis. Thus PANDAS is when strep antibodies attack your brain and causes you to have OCD symptoms OR when Lyme antibodies attack your brain and you have OCD symptoms OR when pnemonia antibodies attack your brain and cause OCD symtoms. All are an overreaction of your immune system - but caused by different infections. Thus why some antibiotics work for some kids and not others. Those who have PANDAS specifically due to strep are able to benefit from the (little) reserach that has been done to date. But those who have PANDAS due to other infections are still struggling. Thus we need protocols for clearing up these various infections that cause an overreaction of the immune system for those kids/people who are genetically prone to have immune systems overreact to infections. Each probably needs it's own protocol (how to get rid of lyme infection and how to get rid of strepinfection). I think it's even possible that the Lyme treatment protocol (since it is so extensive)can likely clear up strep. Have you ever heard of this? Has anyone's kid had Lyme? been treated for Lyme instead of Strep and had the POCD symptoms subside... the PANDAS go away?

Irish, German, Dutch and Polish... is it me or are we seeing a trend with the Irish, German and Polish?

Buster, Do antibiotics work the same way as IVIG? I am trying to understand why for some (Sammy) antibiotics alone did the trick. Do the antibiotics eventually acheive everything an IVIG dose? Is IVIG just a way of excellerating antibiotic results? If so, then why go conservative on prophalactic antibiotic dose? Our dd11 got IVIG a month ago and is only on 250 mg of Zithromax per day. We were surprised that the dose wasn't higher.

I read, either on this blog or OCD parenting, a post that mentioned a drug that can be used to increase the body's production of serotonin versus SSRIs which block reuptake.... something like that... I cannot find the post. Does anyone know what I am talking about? Can you tellme anything or point me to the post where the person said you may want to ask your doctor about this....

I completely agree with Vickie - I would definitely back-burner the psych testing until you get the PANDAS answered. The psych testing opens up another whole path that (in my opinion) you don't want to go down UNTIL PANDAS is RULED OUT. Below is a post I did on OCD parenting - just an example for you of the significant amount of pain and suffering that can occur if you don't stay the course to rule out PANDAS - I sure wish I had. FYI, in the post below, I was responding to a discussion about whether or not a sudden onset was necessary to diagnose PANDAS. I think sudden onsets are more apparent in older children and often missed or seen as developmental behavioral (psychologial) issues vs. sudden uncharacteristic behavior in younger children. I hope this helps give you confidence/reassurance as you fight to get the medical community to get to the root of your son's issue versus pigeon-hole him down the psychological path. It's my opinion that the sudden change is even less apparent in younger children - and more likely to be misunderstood as a behavioral issue. Parents/Doctors/ Friends tend to think..."oh this must be terrible threes instead of terrible twos; it's because we had another child; it's because I am working; it's because daddy is traveling; it's because the teacher is being too rough on her; it's because the other kids are being mean to her; it's because she's spoiled... we let her get away with too much… we need to be tougher on her.... " For us, we just learned (after 8 years) that our daughter's PANDAS began when she was three years old. She is 11 now. How I wish I could have back all those years where we felt like we were failing as parents and she felt like we thought she was misbehaving/ a bad girl. We did it all: every kind of reward system you could dream up, timeouts, taking away/earning back toys, Dr Greene's The Explosive Child basket approach. Oh how I rue the day we stumbled upon Dr Rosmond on TV talking about how it is necessary to spank children - we tried that for a couple of weeks, and it traumatized all of us - me and my husband still feel guilty about that. Now we understand how she simply could not help it. Anyone who has had a sweet child who seemed to uncharacteristicall y change over night or even over months - tread lightly; look for autoimmune symptoms before just deciding they need a stricter approach. Sometimes we just don't see it. In the midst of everything else we tend to excuse it as stress or this or that - - especially when they are younger. If you have read Saving Sammy, consider some of the things he did...while an extraordinary contrast in behavior for a adolescent boy - would it seem so extraordinary in a three year old to spin in circles, hop up the walk, need to go in and out the same door, not want to sleep in their room, want to wear the same clothes, not want to bathe? In younger children, I believe you need to: Look for tantrums that seem to be over nothing or situations that are just illogical - why on earth would this upset her so much. Look for a child who was totally dry and then suddenly had nighttime wetness again. Uncharacteristic aggressive behavior and severe shame and remorse following the aggressive behavior; extreme fear that you will be mad at them or think they are bad; inability to sit still or focus, and joint pains (we just dismissed as growing pains). Our daughter had all of these. Another huge sign to watch for is if they know what they are doing is strange, but they just can't not do it. Either our daughter couldn't communicate this to us until she was six… or we weren't listening to her – we were probably too busy listening to all the other people who wanted to tell us it was behavioral. One day, when she was six, her sister had messed up something she was playing with and she was hysterical. Exhausted from her meltdown, she collapsed in my arms and told me through her tears… "Mommy, I know this shouldn't upset me this much, and I don't know why it does, but I just can't help it." Finally, I got it and her doctor got it: OCD (not PANDAS). Unfortunately, this just saddled her with another whole realm of unrealistic expectations to deal with. She was supposed to take SSRIs and do ERP and she would get better. Instead we had five years of failed "standard OCD treatments" that simply didn't work and made her worse. All the while the doctors told her - you are not trying hard enough - and told us (her parents) you have to really make her want it... you need a better reward system… you are not being consistent. This just further reinforced her feeling that she was failing, and our feeling that we were too. Thank God we finally have a clear answer now, so she and we can understand how to help her. Unfortunately, all that wasted time just makes her recovery that much more of an uphill battle. It breaks my heart to think of all those lost years - how painful and lonely that must have been for her….if I only knew then what I know now.

My advice is to go immediately to webpediatrics.com and contact Dr K. Set up a phone consultation. Let him lead you through this in working with you and your local physician. If your local physician won't work with Dr K, fire him and get another. Trust me, we wasted a lot of time going down bunny trails. Dr K will be able to advise you quickly. We finally found him (through this forum) last November. My daughter has already begun her treatment. She has been sick a lot longer than your son. The sooner you talk to him the better!