Megs_Mom

Dr. K is confirmed on the 16th in DC. Sorry to give bad news - don't be discouraged - just call back & I'm sure they will reschedule. He is out of town on the 19th as well.

Still, thanks for the reminder! I usually vote at night, but I know the site gets crazy tonight & we can't risk the site being slow or locking up. I just did my votes & saw that we are back to 5 right now. Go PANDAS!

Oh, I am so sorry. For Meg, we see a ramp up with major exposure to any kind of respiratory illness - generally the ramp up is about 3-5 days before she actually gets sick. It feels really odd when it ramps before she is sick, but I am now assuming this is because her antibodies are ramping up trying to fight off the illness. We have a prescription to ramp up the azith when this occurs (for the immune modulating effect), so we are normally on a low dose, to allow the ramp up. I think Allie is already on the full dose, since the IVIG was so recent? So maybe ask if anything else can be added for 5 days (another abx) - I assume you are already using Motrin, if she tolerates this? We start the motrin pretty quickly when the ramp up starts and that really does help us, especially if we catch it early. Hope it's just exposure & passes quickly.

They only show in your sent folder if you check the box requesting this when you send. But you only get to hold a set amount of PM's - sent items count as part of your total. So most people don't keep the sent ones. If you think they are not going through, you can post a public note just asking if the person received it. But a lot of times, it just takes people a few days to get back to you - perhaps they are on the board a good bit & then are off for the weekend. Good luck!

95% better! Wow, congratulations!!! For Lyme, most experts seem to suggest the Igenex tests - they are just more complete. They are a little pricey & often not covered by insurance, so if you can maintain gains, you may want to wait. We use azith too - doesn't work for everyone, but pretty awesome when it does! Gotta love that immune modulating element of abx.

Did you give any medication for the poison ivy? Oddly, we learned that our daughter had PANDAS when she got poison ivy last June - we gave her benadryl and prednisone for a poison ivy episode that swelled her face up, and while on the medication, the severe OCD (no tics) nearly vanished. It was the wierdest week ever - the OCD came roaring back afterwards - but it did make us realize that her neurological issues were inflamation based. This may not be the case for you, but thought I'd share the story. We actually sort of like poison ivy now - it was a lifesaver for us .

Everyone that is given a child that has neurological challenges, feels that they have failed that child in the past. Everyone. Certainly your history did not give you a great blueprint for how to parent - and yet, you are overcoming one of the greatest challenges and finding your child help for PANDAS. This is not easy under any circumstances. You need to be kinder to yourself to start!!! Dragging that kind of guilt around is going to make you feel stressed & it is hard enough to parent without that kind of additional stress. Start fresh - say you are sorry to your son, if appropriate, and then tell him how happy you are that you have learned together how to best help him & that you will never quit. Then start celebrating what a great mom you are! Many marriages don't survive this stress - so celebrate that as well. You have accomplished a lot.

When we see a sudden and dramatic change, we assume that she is having an exacerbation. So if we are on a low dose of abx, we increase. If we were on a higher dose, we would switch or ADD another abx. We also add both Motrin & Benedryl for 3-4 days and this seems to help a lot. If it were dramatic, then we'd look at Prednisone, but we save that for a major emergency. If your OT is also seeing a dramatic change, then trust that this is not right & go back to your doc that understands PANDAS. You'll get some good advice from other moms about probiotics, if you are not already using. We do abx in the am, then an Attune chocolate bar at lunch (the mint ones are awesome, and the milk chocolate crunch are quite good as well. Avoid the dark chocolate for a child - they will not comply!) Our daugher hates the taste of every probiotic we tried, so this has been a great addition. Hope you see quick improvement. Our first episode was a 3.5, and I cannot imagine dealing with it at an earlier age!

What a wonderful post! I am crying tears of joy for you, here in the middle of the night. I'd go wake up my husband & share but he'd think I am nuts! So glad for you. Every day of happiness is worth a celebration.

My understanding is that since the PANDAS diagnosis is clinical, the CamK is meaningless in and of itself. There are quite a few clues for PANDAS - and if you have enough of those clues, then a doctor will begin to work with a treatment protocol, which will then give more clues. While this is very frustrating for a parent, it is really no different that many many diseases. I'd love to see this disease become more black & white like it namesake, but that seems unlikely. As we explored many illnesses for our daughter, I was surprised by how many were really a clinical diagnosis. Often they could rule something out, but once we got close, had to begin to use the clues rather than a specific blood test. There is a lot of grey in medicine - even in a strep test or a determination of whether an illness is viral or bacterial. Some of the clues that help diagnosis PANDAS - but ALL are not required - are pretty clearly laid out on Dr. K's website at http://www.webpediatrics.com/pandas.html. This is not yet a published study, but may be helpful to show to other doctors or to clarify yourself. I like the updates a lot - he explains the major & minor criteria and diagnoses by defining how many of the major or minor you would need. He does not use the CamK (since not published) but you can add Dr. C's work into the list. Even our PANDAS doc was careful to say that this is a study that helps define PANDAS, but she did not use our results by themselves (we had somewhere around a 133 at the end of exacerbation, with an elevated anti-lyg level). Personally, if the treatment then does not work, or does not work to about 95%, I'd quickly get the child into a therapy program if they have OCD, so that they can learn to control it to some degree themselves, while you continue to look for treatment. (ERP therapy). Otherwise, the terror can be quite overwhelming. Also, if your child does not reach 95% fairly quickly, some additional testing to rule out illnesses such as Lyme (use Igenex testing) or Lupus or a gut disorder would be wise. Trying different antibiotics and at different levels is clearly a complicated thing, but has worked wonders for a lot of kids. But really, a local pediatrician is (most of the time) not qualified or able to manage this. For a long time, we went to doctors that ruled out PANDAS for our daughter due to titers alone. She was classic on other fronts, especially with the sudden onset & classic dramatic exacerbations. We had to find an expert on PANDAS in order to get the treatment that works incredibly well for her so far. It's kind of like expecting your local pediatrician to diagnose and treat Lupus - they should clearly refer you to someone that knows what they are talking about. Then they can support. But the education about PANDAS is still in it's infancy, so they often think it is a simple disease like a simple case of strep. It is not - it is a neurological disease, with an immune or autoimmune component, and as such, is a complex illness. Hope you find someone soon that can help!

Could you consider phasing out abx in a different way? Maybe by using a strong abx that gives longer coverage - but at a low dose? As an example, we use Azithro, and I think it is primarily immune modulating. As a caveat, she does not get sick a ton, does not have an underlying immune issue & is in a small school. We also have a full does for her if she has a flare, which we have to use about every 60 days - takes care of the issue in about 3 days, and generally coincides with ear infection or cold. On a regular basis, we use 3 ml of Azith every other day (about 100). She had a ton of strep in her school this year, but somehow did not get it herself. Not sure if this credit goes to the Azith or not. We'd love to phase out the abx and only use when needed, but until she has a year of nothing, are not comfortable with this at all. We did check with 3 neurologists and an immunologist on the dosing, as I was not comfortable with the lower dose at first. I should also add that while she has stomach ulcers (from BEFORE the abx was started) she has not had any stomach issues with azith - to the contrary, her ulcers seem to be gone for now as well.

You could drive to Charlotte NC for Dr. Tess N. or Dr. C. They have waiting lists, so even if you are trying to get into someone else, get an appt in case you are still searching. You'll need a referal from your ped. You could also drive to WAshington DC area for Dr. L. Chicago is a haul, but is drivable - if you can afford to fly, I'd do DC or Chicago. I know it's a pain to drive - your other options is to call local Neurologists & see if anyone treats PANDAS with antibiotics and/or IVIG.

Keep the appt - if you need it next year, use it. If not, cancel. A month before appt, call and see if they understand and treat PANDAS at all. If not, cancel anyway. In the meantime, run, don't walk, to a specialist that can help you with PANDAS as soon as possible. Wish someone said that to me before the Developmental Ped took titers (negative) and told us and our pediatrician that there was nothing to be done, she did not have PANDAS, she had GAD and we probably did not notice before (you mean before last week????) He was wrong, but caused a year's worth of #@^&%.

We use ERP therapy to develop a language and tools both as a parent and for the child. This was critical to us, in terms of both my frustration level and in terms of her tendency to panic. ERP has helped us both immensely - and my husband, and our most wonderful babysitter in the world. I love my child more than anyone in the world. I expect a lot from her, when healthy, in term of OCD. I am less particular about housework or chores, but my expectations about courage are pretty big. I want her to be a happy healthy functional adult someday, and if I am not around, I want her to have every tool possible to deal with her life. I want her to be independent and full of joy. So yep, I am tough with her - always with love - but I am tough. I am soft when needed too - but most of the time, she needs to know that I believe in HER, not in OCD.

For a long time, we also thought our daughter was not classic PANDAS (she may actually be PITANDS) for a variety of reason - one of which was that while non-functional without a lot of help, she was not "raging". She was screaming in terror or fear, or going to bed - but she was not hitting me, etc. It started for us at 3, then had a long remission. At age 6 and 7 we muddled through until she was finally diagnosed by a professional. It got worse every time for us. I would take it very seriously, and try to find him a good PANDAS doctor for a real evaluation.

Sleep and food were the two things that we found most important during an exacerbation. So during an exacerbation, all bets are off. I move in with her for as long as it lasts. Nowadays with abx, that is generally only a few days. However, when she was not medically treated, this was for months at a time. If a child is not yet medically treated & pretty much back to normal (say 90%), then I personally vote for doing whatever it takes to help them sleep. When she is not treated, I think she needs help more at night than any other time. After her last severe exacerbation, she was still unable to sleep the entire night alone, even after pretty much all OCD was gone. She had developed a pretty serious habit/fear and was just unable to overcome it. She really wanted to get back to her own room and bed - she wanted her independence back - but just wanting it was not enough. So we put together a very slow & attainable ERP plan. I literally moved about 4 inches a night on a blow-up bed. The first night she slept with her hand on me as I was on the floor next to her bed. Then we (she moved the bed herself) slowly moved the blow-up bed further away from her. And once a week, she got a reward of getting to sleep with me. The funniest night was when we reached the top of the stairs (yes, I slept in the hallway), and she started trying to figure out how to get me to sleep on a landing. Had to put my foot down there!!! The entire plan, which she ran, took about 3 weeks to complete. The other really horrid/funny thing that happened, was one night I was sleeping at the bottom of the stairs, and could not sleep about 3 am. So I am reading a book, when a small but awful little mouse comes happily down the stairs. I freaked, it freaked, and it jumped OVER me. OMG, I was so upset, I was standing there in the middle of my living room completely rattled, and not knowing what to do! I could NOT get up my courage to lay down again on the floor. The next day, I made my husband put down about 30 mouse traps. The things we do for love.....

That question - that thought - that reality - it simply breaks my heart. This may sound odd coming from a PANDAS/PITAND mom who went into the darkness with my child - but I believe that we are the fortunate. We will never again doubt the truth of who our child is and will fight for her with confidence and I pray that will serve her well for all of her life. I recently told my best friend, that if I ever seem to go nuts, to please insist on abx or antivirals immediately, and to test for every infectious disease she can think of. I am a changed person. I never realized how much faith and hope and determination can be required to survive.

Thanks so MUCH for these lists. They are awesome & now that we don't need to comment, this is such a fast process. Wish the proxy thing were still good..... Thanks, Vicki and Kelly.

My fav is using the test to run experiments to find the relationships between the antibodies and the CamK levels (are some tics & others OCD, for example). I think $50k is a great start - but IMO it's not enough for the entire study to get to the FDA approval. I actually like the idea of adding the Lyme portion too, because until we can figure out how to differentiate between the variety of illnesses that cause the CamK to rise, and what the appropriate treatment will then be, this test will have difficulty in widespread acceptance. I lean towards respecting how Dr. C wants to spend the funds. I'd also be in support of helping more families get the test. The money will go to great use with Dr. C, whatever the specifics.

I can't post this as I order this journal in paper form. I was about to stop ordering it, when I opened this am's copy to an article entitled "Adolescent w Neuropsychiatric Symptoms Associated w Novel Influenza A (H1N1) Virus Infection. 13 year old boy, normal, admited to ER due to altered mental status - confusion, slow responses, aggression. All blood tests normal. They found flu virus (no other signs) using "real time reverse transcriptase-polymerase chain reaction in a nasopharyngeal swab specimen". Said he had encephalopathy associated with influenza. This is suspected as first case in the US - but in Japan, in late 1990's, there was a flu outbreak with hundreds of cases of encephalopathy, almost all in kids. They treated him with risperidone to control delirious behavior, then gave Oseltamivir for flu, he was discharged after 10 days. In the summary, they state that rarely are viral antigens detected in the CNS tissue and isolation of virus from CSF (cerebrospinal fluid), suggesting that neurological manifestations may results from an immunolgic effect rather than invasion of the CNS directly. They suggest (although no studies yet to back up) use of antivirals, such as Oseltamivir if suspected flu, or sudden onset neurological issues during flu season. So after reading this article, I looked again at encephalopathy, and thought this gave a good list of things that a sudden onset neuro issue child should be evaluated for: http://en.wikipedia.org/wiki/Encephalopathy

We use abx before all surgery & have not had any issues with anesthesia. However, I am not sure if the abx helps or not. I would not allow surgery without abx as a preventative. We take high dose Azith 24 hours before surgery.

So it took me forever to write my last post (I'm at work!), so I just saw this one. Some of what you have listed above screams OCD to me. Especially the showering & clothing.

Hi - the behavorial versus medical is always a really hard question. We choose to do both paths at once. The one thing that I want to say is about OCD. I know that your child may seem like there is not a lot of OCD. But kids are SO good at hiding this. The number 1 misdiagnosis for OCD is ADHD. I absolutely think that PANDAS can cause ADHD and related issues - but it can be hard to tease out the differences, just as OCD can also mimic SID. I realize that this is not helpful to just "say", so I'll give some examples from our life or good friends. I should add that it took about 4 months of very intense therapy, education, normalizing, etc, for our entire family to really understand how many areas OCD effected in our daughter's life. Treated with abx and now very occassional tools from ERP therapy, she is doing so well, and is such a funny happy kid. But we still occassionally find "echos" of OCD that we can only knock out because she knows what it is, and can talk about it. Ways that OCD can mimic ADHD: * a child that has contamination fears may have trouble sitting in a classroom. They may feel that a germ got onto a pencil & have to trade it in - so up they hop (teacher says "sit down", they cannot until they get the pencil). Child may brush back of your child's jacket in passing - child may need to wash hands, brush it off, may not be able to concentrate on work any more. * a child with just right OCD may have the wrong number of pencils on their desk. They may feel that the child sitting in front of them has a chair at the wrong angle. They may need to touch a chair on the other side of the room 6 times because some one touched their chair. One shoe could come untied and mean that both shoes need to be tied 3 times each. They may need to sit down 7 times before they can do their work or the "teacher will die", so they are hopping up and down. I should add that in all of these examples, the child will not want to seem wierd. So they will give excuses, or try to seem normal. They may try to make other kids laugh so that they do not see the panic. They may give up & simply stare into space, as they are trying to keep it together until they can get out of the classroom. They may be saying mental rituals in their head to ward off hard & therefore are completely unable to hear the lesson on fractions or do the work on the desk in front of them. * a child with perfectionism OCD may not be able to accept a letter that looks wrong on the page. They may erase until the paper is ripped. They may not be able to explain why they are stuck on one word, and will throw the paper out. * a child with doubting OCD may not be sure that they read a test question correctly. They may reread each question 6 times before being able to answer. It is like they are taking 6 tests. * a child may not be able to walk on black squares. So they may leap about the room or refuse to stay in line. They may run in odd pattens that are not easily understood if you don't know what the compulsion is. * a child may "forget" to bring a contaminated book home, and cannot do homework. Contaminated clothes or homework may be "lost" so that they don't have to touch it. * A child may be unable to eat certain foods for fear of being sick. If they cannot explain this in any rational way (You liked it last week, honey, you have to eat that or there isn't anything else), then they may be hungry a lot - it is hard to concentrate when you are hungry. * a child may have mental compulsions that cause them to seem like they are not "hearing" or concentrating. For example, if another child says "stupid", they may need to say "sorry, God" 40 time. if they say it "wrong" or are interrupted they may need to start over. * a child with scrupulosity OCD may worry that they are cheating. They may spend so much time creating "walls" around them with folders & lunchboxes, and look disorganized & not finish the test. They may not be able to answer a question that they really knew, for fear that they saw it on another child's paper, and therefore would be cheating. I could go on and on - that is likely a sad reflection of our last few years. But even at the worst, we did find help and support in ERP therapy (with a really good therapist, not just someone that does CBT - an expert). This may not be the issue for your child - but I do want to say that OCD is not easy to recognize - it often hides and causes a child to try to disguise it. Through therapy for OCD a child can learn how to understand what is happening to them, and are given tools to help. This then allows a parent to know if there is a lot of uncontrolled OCD that needs to be medically treated in another way. There is a HUGE difference between the occassional small OCD habit that we suddenly realize has lingered. Meg beats those us with a certain joy in her ability, since she has the ERP tools and confidence. However, when a medical issue causes sudden onset, then our world is rocked and we treat medically. The ERP tools do help her get through her day or past a situation, but it is very hard & she needs a lot of help and support & allowances. I also vote for Dr. K & for CamK test, if at all possible financially. You need confidence when you make these difficult decisions, and this doc & this test can help you have that confidence. I love Dr. L as well.

My thanks to Vicki & Kelly as well. An amazing first month. Kelly, I am sure we all understand your decision - i certainly do!!! I can't believe how much time this actually requires and what amazing dedication you both - and all the voters - have given to this. I'll continue to vote & gather proxies. Hoping for a wonderful June!!!

The food thing is so hard. We pretty much gave up on meals. We just put out "small bites" all the time, especially trying to have protein around - we did nuts like cashews, then put peanut butter on apples, etc. Food was a full time job - so I feel your pain. The big policy that we had (and her "anorexic tendencies" were never life threatening in any way - that would be different) was that we did not discuss food. If she did not eat it, we just ignored it. If she asked for a snack, we simply said "check the fridge or the counter" and there were always "small bites" ready for her. We made up our own little baggies of chips, pretzels, etc as well that were in the cabinet. But we limited the amount that she would see, just a few bags in the cabinet that she used, with different options in them. Our daughter was very overwhelmed by the sight of food in volume. I think that having a good bit on her plate would send her into a panic attack. Restaurants were almost impossible - I'd order for her & then get a seperate plate & cut a few bites onto it. But even the sight of my plate would make her feel ill. Snacking all day long kept her weight fairly steady, and some of the drama out of the house. If she was eating a "meal", we'd put tiny portions on her plate - not at her request, but just from the observation that volume really stressed her out. Oh, she also did not eat while sitting at a table. She would usually stand, but was happier if allowed to eat on the "run" during that time. Also, we used a lot of Kashi Crunch. She liked the texture & got a lot of nutrients in a tiny amount of food. We would have this or a few bites of a breakfast bar by her bedside before she woke up. Liquids were often easier for her to handle. We did NOT suggest this to her, but we did offer juice and drinks like gatorade so that she was getting some more calories. Normally we drink mostly water.