Megs_Mom

By the way, it is very normal to doubt yourself. My dd was on the low end of severe, and I still found reasons why it could not be PANDAS. Other kids that were worse, etc....

There is likely a more recent document than Swedo's original 50+ from 1998, but here is a start: http://intramural.nimh.nih.gov/pdn/pubs/pub-3.pdf Two clinical notes should be made. First, not all symptom exacerbations were preceded by GABHS infections; viral infections or other illnesses could also trigger symptom exacerbations. This is in keeping with the known models of immune responsivity—primary responses are specific (e.g., directed against a particular epitope on the GABHS), while secondary responses are more generalized. Thus, the lack of evidence for a preceding strep infection in a particular episode does not preclude the diagnosis of PANDAS. She does want (for this study) a strep connection, but not in every exacerbation. No clinician worth his salt on PANDAS now requires that, as if you missed testing the kid for the first exacerbation, you can no longer prove it either way. That's why it is no a clinical diagnosis - extreme exacerbations that respond to abx help the diagnosis. So does a Prednisone test. So does the Cunningham test, etc. Most of us keep really good graphs showing symptoms over time, along with illnesses or exposure & then times on abx. It often is very obvious this way.

Huh. Liquid silver is great - have a friend whose daughter got strep 6 time - started silver, fine. We are also aggressive about Vitamin D. I am sometimes surprised when I review old tests by what I see, now that I am fairly educated, and don't have to rely 100% on a doc to read them for me.

For our dd (and our doc) the Cunningham test was never a "100% PANDAS", but was a strong indicator. And an even stronger indicator that an autoimmune/inflamatory process was happening. It meant that it was not "traditional OCD" and that we needed to find a medical intervention. We had high ANA levels and low WBC, so we were on a search for a lupus like disease at the time. Her data point helped us lean in the PANDAS direction, taken along with classic response to prednisone. She is one of the most interesting, and ethical, women that I have ever met, and I'm sure that all our data points will result in clearer testing for future kids.

I should say that I have been giving him a probiotic for a while. I have some oil of pregano in the cupboard. But I haven't used it in a year. is it still good ? We need Stephanie2 to weigh in - she knows all the remedies! Did you do it before getting up or eating? We could not do this am, and yesterdays does not count yet, as she had eaten already, so that messes up the test. Hope this is your answer - sorry that I have not gotten to the remedy phase yet - I was hoping for answers on this thread (I'm lazy this week!!!).

I apologize for not knowing this about your son's story - but has he been checked for an immune deficiency already? Getting sick all the time would be a sign of an immune deficiency. You'd need to go to an immunologist for a full battery. We used to discuss this a lot on the board, as quite a few kids did have a deficiency. Let us know if you need the list of tests - I have those somewhere, as we ran them a year ago.

I agree - our kids are amazing. My daughter was "forged in fire" over the last few years, but her insight into herself and others, at age 9, is quite amazing now. She is a quiet leader, by example - and adults often comment on her maturity (she is a complete little goofball at the same time!) Tmom, I am SO glad to hear that things are inproving for your dd12. We find ERP techniques easier to practice on the backside of an exacerbations, as they feel health returning and are motivated to help it come faster.

Hey - This is actually very normal for OCD - whatever the type. If your child has PANDAS, then treating that will really help. However, we find ERP therapy to be very helpful either way. Our daughter had a lot of this kind of OCD. It falls under the subtype of scrupulosity. Often people think this is a very hard kind of ERP to do, as this seems like a mental ritual about a thought. But actually, the obsession is the thought, the compulsion is the telling of it. Have you explained what OCD is to your child? If not, you need to buy the book "what to do when your brain gets stuck" http://www.amazon.com/What-When-Brain-Stuck-What-/dp/1591478057/ref=sr_1_1?s=gateway&ie=UTF8&qid=1285796081&sr=8-1 & read that together for the next week. There are really a lot of steps to ERP, but I don't see why a parent can't take some steps at home once you have read the book. The first thing is to communicate with your child about how you are going to approach it. Let him know that OCD tries to make him worry & confess things, and that you know this is OCD. I like to spend a week or so, just defining OCD for a child. So this sounds silly, but everytime he confesses, tell him "oh hon, I am so sorry that OCD (we like to give him a name - like bossy guy) is trying to make you think you will kiss a tree. No big deal, you can beat him up when you are ready". Then I graduate to asking him - is that bossy guy wanting you to think that, or is that You? Give a little prize if they are able to tell the difference. Once you feel like you have depersonalized it a little, remind him of how you read the tools in the book, and ask him if he would like to beat up bossy guy one teeny tiny time? Suggest that you will be there, and if it gets too hard, he can try again a different time. And that if he tries, he can pick a prize from the prize box (by the way, run to your nearest dollar store & spent $20 on stuff he will like - then make coupons for other things, like extra 10 min of TV, or read book with mom, or dessert for dinner, or game with dad). Next, pick the tool that you are going to use from the book - or I you can make it up. The idea is to CHANGE or CUT BACK the ritual. There are as many ways to do this as there are compulsions! I have to run tonight, but here is a quick snapshot - let me know if you want more. You can spend 3 days counting (with him!) how many times he confesses. Say it is 100 times in a day on the high side (if it is more than 100, you may want to try a different tool first)! Now make a little worry box & get a jar with 110 chips in it (you can make with him out of paper if you want). Each time he confesses, BEFORE you respond, ask him to drop a chip in the box. Be sure he can see the chips in the jar, so he'll know if this starts to run out. See if he can keep confessing down to 110 times (you want him to succeed!). Then do this for 3 days or so - if successful, move the number of times down by 1 from how many he is really using. This is pretty effective as a technique, once the child sees some success & beats it up a few times (delays telling you or does not tell you) then they start to feel better about their ability. Another tool is to simply delay. When he wants to tell you a compulsion, as him to do 5 jumping jacks first. You can use coupons and agree that before he tells you, he has to pick an activity out of the jar, do that (make them SHORT at first), then tell you. If he does this 5 times in a day - prize! YOu are not looking for big change at first - just want him to build confidence that he can beat up the OCD. Make sense? I can email you later if you want. How bad is his exacerbation? Hopefully, the abx will help a ton - but either way, we find ERP tools are very helpful in dealing with day to day issues. Remember that your child's brain is just stuck, like a broken record - but he is still a normal great little kid.

Hi all - I was googling "yeast, memory loss" last night for a friend, and ran across this "self test" on a couple of sites. I did it for myself this am, and all dissipated. Then I ran it for dd (who does not know how to spit , so it was not first in am, it was about an hour after she woke up. Her's was stringy and ran down the water. We'll do again tomorrow). So my question is - is this test accurate? Or can it mean other things? Also would a bunch of you moms (I love our personal focus group here) run this test tomorrow am on yourself, and on your kids? I'd love to hear the results. I would tell you that we have no "signs" of yeast at the moment in our dd - she seems fine, I really just tested her for our friends comparison. However, she is on long term abx, so I should likely be ensuring that we clear this, just so it does not add to our issues in the future. Here is the test that I found on-line: The very first thing when you wake up in the morning, roll over before getting out of bed and spit twice into a glass of water. Now over the course of the next 15 minutes watch the glass of water. If your spit just kind of dissolves and dissipates in the water, you do not have a yeast infection... If, on the other hand, it becomes cloudy, has little fingers and strings, sinks to the bottom, or does anything else other than dissipating in the water, you may have a candida yeast infection. Strings and spider webs are a very positive indication for yeast. If you have what appears to be sediment in the bottom of the glass, you more than likely have parasites, also, which many fungal disease sufferers do have. The very first thing when you wake up in the morning, roll over before getting out of bed and spit twice into a glass of water. Now over the course of the next 15 minutes watch the glass of water. If your spit just kind of dissolves and dissipates in the water, you do not have a yeast infection... If, on the other hand, it becomes cloudy, has little fingers and strings, sinks to the bottom, or does anything else other than dissipating in the water, you may have a candida yeast infection. Strings and spider webs are a very positive indication for yeast. If you have what appears to be sediment in the bottom of the glass, you more than likely have parasites, also, which many fungal disease sufferers do have.

We have 2 neurologists, a pediatrician, an immunologist and a gastrointerologist! Our daughter has stomach ulcers & sees gastro for that, pediatrian is on board but will not prescribe - see her for normal stuff along the way, local immuno & neuro are emergency PANDAS team , long distance neuro is for long term plan & serious emergencies if we need her. I like having a TEAM of docs! Anyone quits on us, and we have a back up plan.

Ditto. I did this a lot as a kid and teenager, also; in my case, it was my favorite way to read. My DS13 does this sometimes, as well, when reading a book. I think it is a sensory thing, as DS has a lot of sensory issues, and I think I did, too, as a kid (though I was just told to "get over it" and "act like a lady!" ) In general, I don't think of this as a PANDAS "problem" - more that our kids seek a soothing mechanism when in an episode, and that for some reason, head stands, etc seem to help to calm them. I think this is also a premise of yoga, right? Side benefit for us was that she is not an awesome little tumbler . But during episodes, it was different - it was a tool for us. We did the hanging upside down thing too, we called it "shaking the frustration out" and she loved it. Maybe this is why my husband has neck pain now....

Hi Nancy - I am so glad to hear an update on your story! That is so encouraging, after he has suffered so long. It really makes me wonder (even more) about so many of the children at the conference.... I tend to credit the tipping point in our story to abx - but with credit as well to time & hard work.

I think a lot about that question, as our daughter is still abs only. She had 4 exacerbations before treatment, we were unable to find treatment, so used ERP. She would remit 80%, baseline steadily increasing, each exacerbations lasting about 3-4 months. Very severe OCD. Azithromyacin was really miraculous for us. We continued ERP as well, but the azithromyacin was a turning point. While we would do ivig if needed, we are now a year out, and holding at 99% with very small blips. I second the idea that if caught early, abs may be enough. And for some kids, it seems to work as well, even later, like mine. I think a lot of those parents leave the forum, and only rarely post. But i am not terribly opinionated about this, we continue to be open to what life may bring, although I pray daily for normal to continue. She did improve to 95% in about a month or two, then with steady improvement over the next 6.

Triple dittos. Even when well. Only positive of pandas, was she suddenly did a perfect handstand towards the end of a two hour panic attack. It startled her out of it. I wish I had it on tape, it wa so astonishing, all that rage and frustration channeled into a perfect physical moment. We went to OT soon after, and learned a lot of sensory techniques. If we caught a panic early, often standing on her head would calm her. Weird right! She now wins awards in her gymnastic team for her headstands. She can hold longer than anyone.

Really cool! And so glad you are willing to share your child's history. Our dd's "first" episode was at age 3.5 - it was clearly PANDAS. But we had one time before she could communicate the "why" of things - maybe age 2 - when she suddenly became terrified of swings. To the point of screaming when she saw another child approach one. It lasted about 2 weeks, and then faded away. I lost the timeframe, so have no idea what was going on healthwise at the time. It was so out of character that I have never forgotten the moment it happened. She went from being a child that would live on the playground, to refusing to go at all. We spent about a week or two unable to even walk her near a playground. Wierd what you remember and see in retrospect.

Dr. L, very happy with her. I tend not to think anyone has all the answers on PANDAS/PITAND yet, but she has been a great lead to our "team" of docs.

This is very true for us as well. Frustrating, but true. If we ever find the underlying cause of the inflamation that seems to lurk beneath the surface, we will be thrilled. We use Azith. So far, blips are managed by immediate use of Advil, increase in Abx, and relious adherence to use of Omega 3's and prevacid on an everyday basis. We have prednisone in the fridge, at the ready, but have not needed to go that far in the last year. We know it is a fragile peace. I would be hard pressed to change it, and I worry at every doctors appt that we will not get the renewal. So sorry to here that she is still struggling. Hope the burst puts her back in a good place.

I'm so sorry. I assume you are trying prednisone or advil, and maybe a change in abx. So all I can say is that my heart is with you. Your post (and Joan's) made my heart race and I felt the need to do something. I know how horrid this situation is, and will pray that you find answers and that he can go with you to receive them. OCD is a horrid horrid illness, whatever the cause. You do know now that you have an infection based cause. So I send you my faith and hope that you will find help for him. I've also met people at the OCD confernce who have recovered from very severe situations. It took me a while to be able to hear their stories, but I now find them to be full of hope. Wishing all the best for your son.

We have ulcers. Had to do an endoscope to find. Was looking for Celiac at the time - to find an autoimmune disease. All docs think related.

Our first episode was at 3.5 and did go away nearly completely, with only 1 week of abx. However, she was also left with sensory issues that I thought were just due to the age at the time. We were in a very very bad place at 3.5, and were just grateful to have no OCD, anorexia, etc. She had a 3 year remission from clinical OCD. However, at age 6.5, it roared back & we could not get treatment - it did subside with ERP therapy after about 3.5 months, but only by about 85% of baseline. With 2 back to back exacerbations the following spring/summer, she was pretty incapacitated. She had OCD, agoraphobia and panic disorder. She would have multiple panic attacks a day, caused by OCD extreme thoughts. While ERP did continue to help us all cope, I would never allow that again, knowing what I now know. She was in a lot of pain - sadly no one knew how to really help her for far too long. With antibiotics (along with ERP) she is back to herself completely. We are lucky so far, that abx is working for her. However, in the year that she was untreated, this appears to have become chronic, auto-immune for us. We think the abx is either anti-inflam or immune-regulating, and keeps her illness spikes to a minimum - just little hills. Our situation was severe (although by no means the worst here) and we can no longer imagine our child not being treated on-going. Your doc sounds like they want to help - but if possible, seeing a specialist can really turn things around.

Well, that is too bad. So sorry - glad you have the r/a option. Hopefully that will work quickly so NO MORE RAGE! poor kid, poor mom. I haven't been keeping up well in the last few weeks - I am giddy thrilled for you both in the progress in writing & counting! That is just stunning news. Congrats, mom.

We have this all the time - but the spikes are not there (so far) anymore. Know your feeling of panic, but we see small hills, not huge mountains. You may find that he gest sick in the next 3-5 days. We increase our abx, do motrin every 6 hours, and make sure we are on top of vitamins, omegas, and vitamin D. If you find you are in a mess in 5 days, then you can use prednisone. Do you have it on-hand? If your child has a chronic issue, which he may, you just need to be prepared for these mini-bursts. Hope we are right - we'll all be thinking of you. Good luck! By the way, I panicked the first 3 times, my best friend can tell you! My dd could feel it coming too - even a few panic attacks on her part - but now she is pretty calm about it as well. For the most part. As a parent, once you have been through the worst, and then things are calm - when it comes back, you are a little PTSD. Usually the first time, you are in the trenches, with no time to mourn. When it comes back, everything comes out. It's totally normal. You might want to go talk to someone about it - there are all kinds of therapists training in helping parents with a sick child - whatever the reason. Talking - chocolate - wine - they all work for me.

Oh, we can relate! Spelling and multiplication memorization have improved, but I wonder if they will ever be back to normal. She is way ahead of her peers on reading and math concepts - behind (but not horribly at this point) in spelling, multiplication and handwriting. This was so much worse in an exacerbation (she fell into the lowest spelling group last year, from the highest the year before), but is still notable. I really don't care about spelling & handwriting, but her school does timed multiplication tests (which I think is stupid, but makes her feel bad if she is behind), so we spent much of the summer working on these in a low key way. She would not do anything that seemed like actual focusing on the multiplication tables, so instead of having her do the computer games or videos, I watched the darn things, and then tried to find ways to use them in real life. We set up games, such as "war" or "matching" using multiplication cards, and did a "two hard ones a week" goal, where we literally just tried to learn 8x7 and 8x12 in one week. We'd spend about 10 minutes at a time on this maybe 2-3 times a day. We used a lot of math tricks, to aid memorization (such as the 5,6, 7, 8 song for 7x8), and then taught concepts for 9's, logic for 12's, patterns for 11's, etc. We found all the factors of 24 as another example, and then spent one week learning all of those, instead of memorizing them in the 4's, 6's, 8's, etc. We talked a lot about what makes sense - like if you know that 8x10 is 80, then 8x7 cannot be 84.... She is pretty good at them now, but she has them memorized more from logic or concept than from pure memorization, if that makes sense. This keeps her slower than the other kids, but she is surviving. She is now the last kid to finish most math tests, but gets better scores - so I just keep telling her that I'd like my scientists to go slow anyway. No point in measuring the wrong amount because you do it fast. I'm not sure she'll ever get all 100 problems in 3 minutes, but she knows that I do not care, so long as she does her best. On the flip side, she is one of only a few kids that can understand the concept of place value in 2 or 3 digit multiplication, and is begging to do long division. I'd rather have that.

That's a great idea. This is the only residual thing we have left from PANDAS - her therapist says it is not really related, that a lot of kids have needle phobias. I know it was caused by some bad experiences in our case - she was great even in a severe exacerbation until 2 very very bad nurses . We decided she is too old to hold her down & we have to have her participate. I ask her to do SO much, and she needs to trust me - she is claustrophobic anyway, and being threatened with being held down is one of the things that made her start having panic attacks about blood draws. It is one of the worst experiences we have had - we've done over 40 vials, and every run is a nightmare so far. We did therapy at home, EMLA (which is helpful), awards, consequences. At one point, I thought I'd lose my job, we were trying with the lab every day for WEEKS. That nurse was a godsend, and finally came to our home on a Sunday afternoon so that there would not be an "end point" that our dd knew she would win and not have to do it. I would have given her our car if she'd asked for it, I was so grateful! OMG, it makes me want to scream to think about it - and we have a number of tests we should be doing now, and I am putting off because I cannot handle it! I have considered getting a certification myself, as she will let me do it - it's more the nurse and a trust issue, than the needle itself. Sorry not to be of more help - this was so stressful for me, as a parent, to want to keep trust with all the hard things we were asking our daugther to do, feeling heartbroken about her fear and feeling of failure, and needing her urgently to get the draws done. Not a good combination for any of us. I LOVE the idea of telling her that it will help other kids with PANDAS. She feels very strongly about this, and maybe that internal motivation will get us over the hump. She just turned 9, and I told her that 9 year olds have a much easier time with it than 8 year olds. Hoping for the power of positive suggestion!

What a funny thread! Our dd was also always very fascinated by breasts - especially mine! I thought maybe I fed her too long! I'd lean towards 3 year old wierdness. But you'll know if it goes PANDAS wacky. Have you tried to give him an alternative? I think offering a squishy ball - like the ones you squeeze & they pop out in all directions. Try offering him something like this everytime you are uncomfortable. Same kind of feel, maybe that will satisfy his sensory need?