Mom23boys

I am so sorry! Pandas absolutely does run in families. We see Dr. L and she says while the absolute scientific proof is not there, there is a genetic component. This makes sense because it is very closely related to Sydenham's Chorea, which has been scientifically proven to run in families, and the fact that SC is genetic is accepted by mainstream medicine. Of course, OCD runs in families too. His behavior is certainly concerning and I would follow up with treatment for the OCD for sure. I would not dismiss the possibility of an infectious trigger. Since you have been down this road, you know that with the right antibiotic behaviors can wane. I would do a one month antibiotic (at least). I have 2 PANDAS kids. My sister has 3. SC runs in our family as well as autoimmune reactions to strep. My sister's oldest was in terrible shape and required plasma exchange and over a year of IVIG to return to baseline. Her middle child, while not nearly as bad, was also concerning and had 4 IVIGs. Her youngest began exhibiting ocd behaviors and she got on a plane to Dr. L asap. She was 6 at the time. Dr. L put her on antibiotics for a while and then did a one month steroid taper. She has been perfectly fine since (she is 9 ½). It sounds to me like if it is infectious and you hit it hard it may disappear never to return!

And as far as my sister's nanny goes, she is willing to do whatever. She will organize pantry, clean fridge, wipe down baseboards, water planters, etc. Plus she is a doer, so she keeps busy. When she started she went room by room and wiped down and dusted all woodwork and baseboards. Pretty new house (3 years since reno) but there were still scuff marks, etc. and things that the weekly housekeeper did not do. If you could find a helper you could let her know what you needed, even if it is watch them while I take a nap. My sister keeps a tidy house but can always find something that needs to be done (as can I)

I have two pandas kids but both have tics only and they are very mild. I do have a housekeeper once a week (lifesaver!) but no other help in the house. However, I would not hesitate to hire help if you need it! My sister is an ob/gyn and works 2 days a week and still keeps her nanny 25-30 hours a week even though her kids are in school. She comes in, makes beds, cleans up the kitchen, runs dishwasher, transports kids, goes to grocery, runs errands, prepares dinner some days, does laundry and ironing, etc. Plus she is an extra set of hands for projects like going through closets, sorting out toys to be donated. My sister keeps her hopping! Plus if you need a break, this would let you take one Don't feel guilty about needing help. It sounds like you do so I would do it!

Wow. That is so scary. We have seen no steroid side effects so far at all. Sleeping great (he runs cross country so maybe that is why), no excessive eating, no personality changes, etc. I may modify the taper a bit to drop down to 5 for a week instead of 10 every other day. He is thin with an angular face (6' and 155 lbs) so a few pounds extra would not be that noticeable. Did you notice weight gain right away, or was it after the steroids were tapered? Dr. L is very in tune with how mild even our oldest son's presentation is, who is the one on the steroids (our younger, also PANDAS, has all anxiety issues resolved except he is still is a blinker ). She sees so many very sick kids that when she sees a kid who is well adjusted, doing well in school, with a few tics (even though they are noticeable and facial) she was not that concerned. This may be the end of the road for treatment (she said no PEX even though covered by our insurance because even though it would probably cure him risk is too great) so I am hoping it works!

I know about the treatments/antibiotics. I wonder that myself. Everyone seems to get something different. I think the Bicillin is because I have two boys, one younger and much more mild (blinks mainly), and the younger will not take a pill (fear of choking was an old resolved symptom but we still can't get past the pills). So we did monthly shots (which were very painful!) She also said it did a better job at getting at the intercellular strep, if any. Both got same treatment. We really don't "flare" - tics just stay at a constant level. They have improved some in a week (and vocal tic is gone) but guess I was hoping for total remission, even if they come back. Maybe that is why he is on such a long taper. The reason for that I think is that SC runs in our family and we talked about it (although the jury is out because even though he has had piano fingers and does have grimacing, the jerky characteristic movements are not there), and this appears to be the SC steroid treatment for chorea based on what I can gather.

My son has been diagnosed with PANDAS by Dr. Latimer. His Cam Kinase was 176 and his strep titers were through the roof (although they have gone down even before seeing Dr. L). She wanted him to do 3 months of Bicillin shots and a T & A. His primary symptom is tics/chorea. Sniffing tic. Facial grimacing. Hand rolling. Eyebrow raising. Frowning. He is 15. They are fairly constant - every 5-10 minutes. We saw no improvement after the T & A and went for a follow up 2 months out. Although Dr. L thought we would still see improvement from the T and A, his tics are not improved and what I would consider disruptive in a setting where you did not know him. All is fine in school because he is confident and well adjusted and very smart so school is easy and he is a kind and funny kid with lots of friends. Still the tics are no better and I am thinking about the future here, so Dr. L put him on a pretty high dose 8 week steroid taper. We are a week in at 60 mg and have seen some improvement. Sniffing tic is totally gone and it was constant and disruptive. My mom sat next to him in a 3 hour musical and didn't hear it once. Still some grimacing but it seems better (although am I looking for it). Can you let me know when you saw results from steroids and at what point? He is almost 6' so on a big dose - 60 mg for 3 weeks, 40 for 2, 20 for 1, 10 for 1 and 5 for 1. Love to hear thoughts!!!!

My boys were prescribed, and had, monthly Bicillin shots by Dr. Latimer. This is the brand name long lasting penicillin shot. One of my boys (10) does not take a pill yet and Latimer thought the shots would be better. Hindsight is 20/20 but the shots are VERY painful. They are intramuscular shots with a very wide needle (it comes prepackaged as a syringe in the US), and it brought my 10 year old (who is pretty tough) to tears every time, even with Lidocaine numbing cream. We also saw no improvement on the shots for the most part, but I know some improve greatly on penicillin. I think we needed a different antibiotic, or perhaps we have no active infections just an ongoing autoimmune response. If you google Bicillin shots you can read about them and what to do to minimize the pain (bringing them to room temperature is key), but they still hurt like the dickens. I might ask about an oral antibiotic instead for such a young child. My 14 year old, who is 5'10 and 150 said they really hurt and he is really tough

And to elaborate, when I say their main symptom is tics, we have had no issues with school, behavior, socially, etc. Grades still high and school reports, including behavior, still excellent. No rages, tantrums, oppositional behavior, etc. Basically two normal kids with tics that came out of the blue after a strep infection.

We have made some progress since the original post. Both boys were on Bicillin shots for 3 months and both had their tonsils out on Wednesday. The older, with full chorea, had zero tics for 12 hours. This is unheard of - he tics with facial grimacing multiple times an hour. Not sure if it is the surgery or the steroids given during surgery, but either way I am hopeful. Dr. Latimer explained that if steroids help, it shows us that the tics are autoimmune in nature (i.e. PANDAS vs a tic disorder). Also, response to steroids is a great indicator of whether IVIG will work. The younger's tics were way down before the T and A and I have noticed a couple from him (eye blinking forcefully occasionally). I refuse to give SSRIs, etc. and their OCD/anxiety is so mild I doubt anyone would prescribe them anyway. OCD consists solely of older needing to wash hands after he eats. Younger has no OCD but mild anxiety, which waxes and wanes. Their primary symptom is tics, which Dr. Latimer diagnosed as caused by autoimmune encephalitis. I am interested in any integrative approaches or supplements as an adjunct to traditional medical therapy, realizing that the only symptom that really needs addressing is tics. Any immune modulating supplements would be particularly helpful. Because the tics seemed to respond so strongly to steroids, IVIG may be a possibility for the older one down the road. I don't think the younger has enough symptoms to qualify right now.

Bumping to see if anyone has an answer

Yes - you want to get an immunologist involved and have immunological testing done. This is the only way I have heard of insurance companies covering IVIG - low immune function.

I have two boys who had a tonsillectomy yesterday after 3 months of Bicillin shots, per Dr. Latimer. Both have tics and mild ocd/anxiety. The oldest son has more severe tics - what Dr. Latimer thought was chorea (hand rolling, facial grimacing), and a Cam Kinase of 176, which is borderline Syndeham's Chorea. The younger son has mild blinking tics, and sniffs occasionally. We saw no improvement on the Bicillin. The tics for the oldest child vanished for at least 12 hours yesterday after the surgery, but then returned. They seem to be less frequent than before (they were fairly constant). I have not noticed any today, which is unusual, but he may have had some when I wasn't watching Both boys received steroids during the surgery and also Levaquin antibiotic. I am trying to figure out if the tic suppression was because of the steroids, or whether the surgery may have in fact helped. Anyone have tic improvement after T & A? Was it immediately or did it take some time (after the inflammation from the surgery resolves)? My understanding is that if it was suppression from the steroids, this shows the tics are autoimmune in nature rather than a tic disorder. Does this sound correct? I know tics from Tourettes can flair on steroids, but my nephews (both diagnosed with PANDAS) had their tics resolve while on a steroid burst. Guess I am just needing some feedback as to whether I should hold out hope that the tics have disappeared

I would love this information too. I have two boys diagnosed by Dr. Latimer but would love to find a PANDAS friendly Georgia doctor, especially if they take insurance. I have not been successful so far!~

The other thing that was explained to me is that antibiotics don't always work if there is no active infection. Just because there is no active infection doesn't mean the body isn't acting like there is and attacking the basal ganglia. I don't think trying another antibiotic is a bad idea, particularly if you use one that is immune modulating. It just may be that your child is having an immune response that is ongoing, even absent a current infection.

The link above about OCD contains the PANDAS symptom scale. Dr. Latimer had me fill that out for both my boys. You can have OCD without the classic hand washing symptom. Obsessional thoughts are certainly a part of it. Moreover, augmentin has an immune modulating benefit. It is not the penicillin part - it is the other ingredient that modulates the immune system. That is why augmentin works (like Azith) even where there is no active strep infection (per Dr Latimer). This doctor may be a top neurologist but he doesn't sound like he knows much about PANDAS. PANDAS symptom scale checker: http://pandasnetwork.org/wp-content/uploads/2012/11/pandas_pans_scale.pdf

I have no information about Dr Ks protocol but agree wholeheartedly that depending on your child, IVIG in a center not used to dealing with pediatric patients or PANDAS kids may be a nightmare. I have a friend who just went through this with her child. First IVIG done in an infusion center with pediatric staff and dealing with a lot of PANDAS kids and approved for home health infusion for the next one. This was a disaster. She ended up driving 4 hours to the center where the original infusion was made, with pediatric nurses on staff and who do multiple PANDAS IVIG infusions a week. The home health nurse tried two days in a row and due to severe anxiety, not cooperating, etc. could not get a vein. This may not be the case for milder cases, but when you deal with the anxiety level of so many of these kids, plus the difficulty of dealing with pediatric patients in general (not the least of which is getting a vein in a tiny arm, which you want to get right the first time!), you want someone with experience dealing with kids.

The Pandas Physician Network site lists the NIH protocol for IVIG https://www.pandasppn.org/ivig/

There is a website actually created by top PANDAS doctors for doctors. There is an area you can request to become a member if you are a medical professional. If she is interested in learning about PANDAS this is a great place for her to start. There is also a helpful flowchart that goes through a standardized treatment protocol. https://www.pandasppn.org

My two boys were diagnosed with PANDAS a couple of weeks ago by Dr. Latimer. A little background. . . My oldest is 14 and my youngest just turned 10. My middle child missed this genetic lottery apparently. Both boys by all accounts are mild - tics mainly, with chorea (oldest), mild OCD (mostly oldest) and anxiety (mostly youngest). No problems in school, academically or socially, no behavior problems, etc. We have been told by every doctor we have seen - childhood tics. However, we have a family history of PANDAS, SC, scarlet fever, and post-strepococchil glomerulonephritis. Still - my oldest tics a lot, has mild chorea and is a teenager. He also has developed mild OCD - has to wash hands after eating is the main symptom. Youngest worries a lot - not debilitating - but we have gone through periods of fear of choking on steak/chicken, constant need to urinate (thankfully that passed quickly), etc. Youngest exhibits problems/worries (when he has them) at home/night. Latimer thought clearly PANDAS. We are on Bicillin shots for 3 month and my oldest is on a short course of Augmentin for a sinus infection. No changes yet after a week of Bicillin and a few days of Augmentin. I want to get a team together to handle this as locally as possible, given that I am dealing with 2 kids, Latimer does not take insurance and it is a very expensive plane ticket x3 to DC. My sister (a physician) has 3 kids with PANDAS and she suggested I find a local infectious disease doctor and immunologist if possible. You would think being an hour outside Atlanta it wouldn't be difficult but after reading these boards, it doesn't seem like there are any in Atlanta? My sister seems to think an immunological workup is appropriate for both of them (2 of her kids needed IVIG and both were immunodeficient) and if we could go to a doctor that takes insurance, that would be great. It seems like many of the PANDAS doctors have moved to cash only, which mounts up when you are multiplying it times two and adding in a plane ticket or three! It all seems so crazy to me, particularly since my oldest basically has SC which runs in my family and PANDAS seems like it is a variant of that. Unfortunately, I have gotten a little eye rolling from doctors so I am a bit wary. Any leads on Georgia (Atlanta area preferably) infectious disease doctors or immunologists that believe that PANDAS is a real disease and are familiar with it/willing to treat it?

True. But Dr. Latimer is not someone you pick up the phone and call. Even though we saw her a week ago, we are supposed to address all questions to the portal, for a charge - and this is after flying to DC with 2 kids and paying her out of pocket $$$$ for much less than our allotted appointment time not more than a week ago . . . SO I am going to try to navigate this myself a bit and address only necessary questions to her. Thankfully my sister is a doctor and probably knows as much as Latimer does as she has lived it with 3 kids Sorry for the vent but called today to see if Flonase prescribed by pediatrician today was OK and I was told to direct it to the portal for a charge . . .

The previous poster brings up a good point. If you run titers and they are negative, does that hurt you? My sister spoke to a doctor at the NIH after her youngest had negative titers and positive strep x7 and he said the titers are "interesting" but not diagnostic. Could it be the immune reaction to the cold making him flare? Rather than a strep infection?

Oh and it is interesting to read that penicillin is not standard treatment is that is what Dr. Latimer prescribed my two boys 2 weeks ago (via the Bicillin shot). It is something she uses a lot, and has seen a lot of success with. Crossing fingers!

I am new to the board with two diagnosed boys two weeks ago but not new to the disease (all three of my sister's children had it and her oldest was very severe). Her youngest child had 7 documented cases of strep in one year and never raised an ASO or Anti Dnase titer. Unfortunately, titers are not the answer. IVIG can be a godsend but is expensive! To get it covered you need to demonstrate a failed immune system (insurance companies differ). The PANDAS kids I know personally (my sisters and a few others) have all failed the immune titers tests and have all had IVIG covered. It has worked tremendously well for them. The high strep titers will do nothing to justify the IVIG, at least under our policy. I would suggest you read your coverage and see what you need. . .

We are on this road I think, unfortunately. My sister's 3 children have PANDAS (diagnosed by Dr. Latimer), all to varying degrees, and all thankfully completely well! We have had our head in the sand because our oldest has primarily tics. In the last 18 months or so they have worsened (becoming full blown chorea with facial grimacing and hand movements). He has also picked up some OCD behavior which is fairly mild - like needing to wash his hands after he eats. Otherwise, normal, healthy, well adjusted 14 year old with strong, supportive peer group. No issues in school at all and no behavior issues at all. In fact, Dr. Latimer worried he was almost "too perfect" - a type of OCD. Our youngest also was diagnosed by Dr. Latimer in the same visit (our middle child is 12 and has apparently missed this genetic lottery!). He also has milder tics (eye blinking, sighing, chin thrust, etc.) which are pretty constant but don't bother him at all (he just turned 10) and don't bother his friends either. Our major worries with him are anxiety related. While I thought he "just had tics", I was astounded to see all of the other things on Dr. Latimer's intake form that he has had or currently has (all OCD/anxiety related): fear of choking, fear of germs, fear of food contamination, nighttime fears, inability to sleep alone, urinary frequency, etc. It was very eye opening! He told Dr. Latimer the tics didn't bother him but "I worry a lot about a lot of stuff". He is very thin (always has been) and eats well but has a BMI of 10. He has started the fear of choking thing again and examining his food (strawberries to be sure they don't have bruises, takes a while to pick out which donut he wants because he has to look at them carefully, etc.) From what I have seen from my sister's kids, very PANDASy behavior. Needless to say, we don't need this to spiral into a situation where he won't eat. Dr. Latimer diagnosed both of them with post infectious OCD/tics/anxiety. She said right at first she didn't see IVIG in our future, which I am crossing my fingers about (2 of 3 of my sister's children had it). She wanted them both to have the Bicillin LA shot for 3 months and have titers done. Titers are back and not terrible - one has an ASO of 400 and an Anti DNase B of 210. He is the oldest one. He did, however have titers and a Cunningham panel done 5 years ago and his titers were much different: ASO still elevated at 466 but Anti Dnase B 1:1920 with negative throat culture. His Cam Kinase was 176. The other one (youngest) has really low titers: Not sure of the ASO but his Anti Dnase B is 93. So a couple of questions: 1. With the low titers of the youngest one, do we need to explore more of an autoimmune route? It seems to me, even though we are still giving the shot, that he may not have an infection but his immune system in overdrive is what is doing the damage. Is this possible? 2. With the oldest, how do you determine if your child has actual Syndeham's Chorea? My nephew had chorea and has to be on an antibiotic til he is 18 because of it. Are the positive chorea signs of facial grimacing and hand flicking enough (plus his Cam Kinase of 176 was high PANDAS borderline SC). Is this a clinical diagnosis or are there more tests for it? I am sure I will have more questions as I plod along. . . . Thanks for your input!