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LNN

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Posts posted by LNN

  1. Labels are so hard - you search and search so you know "what's wrong" but then the label itself can sometimes make things harder. You're supposed to correct/punish bad behavior, but if you know it's caused by PANDAS, the way you address the behavior can change.

     

    Likewise, I can imagine how hard it is to wonder how much of your child's approach to life you should accept/embrace and how much you should try to shape/modify.

     

    I'll say that my son's 1st grade teacher told me at the end of the school year, after the worst of things had passed, that there was a time she considered my son to be "asperger-like' and it was only after he started to get well that she began to think that maybe he didn't have asperger's. (The mice in the Columbia study also became "aspie"-like.) When he started 2nd grade and his teacher complained that my son was "too social" and he kept coming home talking about all of his friends, it was the happiest time for us. (he had zero friends in kindergarten and 1st grade).

     

    I'm not telling you to deny an asperger's diagnosis. I guess I'd just advise you to remember that labels and peoples' perceptions can change. So try to only focus on the things that cause your son distress or are completely inappropriate behaviors. When my son gets angry, my husband says something like "Don't get so angry". You can't tell someone how they should or shouldn't feel. So what I try to do is say the anger/feeling is ok. But it's the way that feeling gets expressed that can be right or wrong. We spent a lot of therapy talking about being responsible for actions and behaviors and owning those actions regardless of the disease that triggered them. So if he acts out, obviously that needs to be addressed regardless of cause. But if your son could care less if he's a lone wolf or if no one else shares his intense interests, then it might break your heart but probably isn't where you should put a lot of energy.

     

    I don't know if it would help, but you might want to browse a few books by Temple Grandin or Ten things Every Child with Autism wants you to Know - books to give you insight into your son's perspective on things. You might also want to check out autismone.org for their blogs and articles. Just like it helps us to hang out with other pandas parents, it can help to share experiences with other parents in the asperger's community. I'm often struck by how much the two communities have in common.

  2. Great Post! I too am typing from work...suspect we are not alone...

     

    When I'm at home, I try to compartmentalize my time on the forum, especially for after the kids are in bed. But they do see my on the PC far too often. PANDAS of course fills a lot of my thinking time - shower, drives to work etc. But when it gets out of balance, I force myself to turn the PC off. And I let the kids tell me when it's too much. They especially like it when I screw up and they get to hand out the punishment. In our house, we lose privileges for bad behaviors. So if I use a bad word or break a house rule, they can make me lose computer privileges the same way they lose TV time. It kills me and delights them!

  3. Just wondering what the side effects of a steroid burst are. If Dr K gives us a script at our appt coming up on the 31st, will there be side effects?

    We leave for vacation the next day and we will be in and out of a car for 20 + hours.

     

    Thanks everyone!

    JOhnsmom

     

    When my son was 2 and he'd get croup, he'd get 4 days of prednisone and by end of day 2, he'd be off the wall with hyperness and no impulse control. That's a "normal" response to prednisone. Now that he has PANDAS, prednisone calms him down and greatly helps his symptoms subside.

     

    If you were to see side effects, you might want to watch for irritibility/temper or impulse control issues. But I think most PANDAS kids have an opposite reaction. If you're dealing with tics tho, be sure you have a clear clinical story for PANDAS, as steroids can aggravate tics in TS patients.

     

    Also, if you're doing a higher dose of prednisone (e.g. 2 tsp) and you decide you want to stop early for some reason, you should taper the dose down, not stop cold turkey. Cold turkey from a higher dose to nothing can trigger rage/mood swing stuff, like gears with no lubrication.

     

    You should also give it in the a.m. so it doesn't make bedtime difficult (sort of like you wouldn't drink coffee just before bed).

     

    Finally, I'm sorry I don't know your child's age. But if it's a child who can't swallow pills and you get a liquid, ask for prednisolone/orapred, not prednisone. Liquid prednisone is very very medicinal and nasty. Prednisolone goes down much easier.

     

    Hope you see good results!

  4. I started thinking about how different things are from a year ago when I joined this forum and I started writing down all the positives that have happened. When you put it all in one place, I think we as a community have accomplished quite a bit:

     

    * The website www.pandasnetwork.org is launched and gives parents a great collection of information as well as a way to connect with doctors and document their child’s story

     

    * The Cunningham study becomes publicized (within our community and among the expert doctors) and the study is able to capture a wider range of subjects and help a wider range of confused parents

     

    * An IVIG study is proposed with Telecris, and while it doesn’t receive funding, a dialogue between doctors is started

     

    * The Columbia mouse study is published

     

    * Saving Sammy is published and given wide media attention – people hear PANDAS on national TV

     

    * The non-profit PANDAS Foundation is founded and the Got Strep? Campaign launched

     

    * NBC and others cover a “mystery” presentation of a girl’s tic symptoms and hear about PANDAS again. Across three Today show episodes, the disease goes from being treated as “controversial” to “rare” to something that’s portrayed simply as an autoimmune disease . (Watch all three clips back to back and watch Nancy Snyderman’s tone change).

     

    * The Autism File publishes an article on PANDAS and the Autism One director dedicates three radio interviews to the disorder

     

    * Scientific American Mind publishes an article about PANDAS and quotes Dr Swedo as estimating that a quarter million kids diagnosed with OCD might actually have PANDAS

     

    * Members start the Pepsi Refresh campaign for PANDAS

     

    * A local NPR affiliate does a two day story on PANDAS and a family in Chicago

     

    * The non-profit Pandas Resource Network is founded

     

    * Through member networking, links from other web sites and word of mouth on other forums, membership on Latitudes likely grows (perhaps Chemar could say by how much?)

     

    * In May,the Autism One conference will provide 5 presentations on PANDAS and sponsor a think tank

     

    * In July, the IOCDF conference will provide 3 presentations on PANDAS

     

    * This summer, a separate think tank is in the works.

     

    And the network of doctors willing/able to treat our kids has grown - it's not large, but it's bigger than it was awhile ago...

     

    I'm sure I'm missing things, so by all means please let me know and I'll add to it. I know this disease has been around for a long time and that other great things have been accomplished. I was just trying to look at the past year and see what's different. What's missing is funded research (and treatment answers), but as a community we're doing some positive things to raise awareness and move things forward. It's easy to get depressed while in the middle of your own crisis. But I think collectively we're making a difference and I want to give newcomers hope that people are pushing for answers. And what's really the most important thing is that no one person is - or could possibly be - responsible for all of this. This is about everyone doing their part - large and small - to make things happen.

  5. Proposal for a working definition and classification of PITANDS

    Notice that the hardest to verify part, the "autoimmune" part, is left out of the criteria (though it always behind the scenes)

     

    SUBGROUPS

     

    Type 1 PITANDS - PITANDS in an apparently immunocompetent host

     

     

    E. Idiopathic anti-INFECTIVE-responsive neuropsychiatric disorder, not otherwise specified (PITANDS-NOS) - the wastebasket group

     

    I think it's good to widen the net and move away from the strep aspect of the disease. This seems to be the big source of controversy, so I applaud the focus on infectious agent, but I'm trying to look at this from the perspective of a naysayer...

     

    It seems like classic childhood OCD and chronic tic cases would fall into Type 1 subgroup E "wastebasket" and yet this is presumably the largest class of kids in the general population. And if I'm reading correctly, a kid gets put into this group if they develop OCD or tics and doesn't respond to antibiotics. Am I mis-reading? Would this definition suggest that all kids who develop OCD or tics first be treated with abx and non-responders would be diagnosed with classic OCD/tics? This would draw tremendous attack from naysayers and would doom a number of kids if they were given the wrong abx, an insufficient dosage or for too short of a time. Can you clarify this for me?

     

    I'll go back to my soapbox and say that my wish for the upcoming think tanks is that a uniform series of diagnostic tests be agreed upon so that we can start to look at all patients with the same data - a full immuno workup (whatever that might entail), tests for mycoplasma and lyme (from the correct lab), ANA levels, CAM K II levels, an illness history questionnaire, and a neuro exam to check for choreiform movements including piano playing. I think until we start gathering consistent data prior to treatments, we won't be able to say why something works for some and not others - the naysayers will have a field day with "bad research." Somehow the autoimmunity piece has to be captured in order to distinguish this disease type and justify the current family of treatments (especially from an insurance perspective)

     

    Likewise, without long term follow up tracking the same data, we're not capturing the full story of what works, what doesn't and why. Parents are left playing roulette with our kids futures.

     

    I think you're on the right track with sub-groups, each having a different trigger (and possibly a different course of treatments) - and away from strep and the only trigger. I'd lust love to see some uniform data points gathered along this track.

  6. I would contact Dr Leckman at Yale - he's discussing an IVIG study but I'm not sure where he is in the planning/finding process. I'd also contact Dr K for his input, as he's obviously the expert on IVIG protocol and Dr B, who also does IVIG for Pandas. Between the three of them, they'd have the most insight. Dr Leckman might also have research assistants available to help with the administration/data collection. I'll get you their contact info.

     

    Great job networking! I really hope this goes somewhere!

  7. There's not much you can say to a 3 yo that will change how she feels. Just know that by getting your son healthy, you're setting a framework where they can improve their relationship, but at this age, they may still see each other as something less than great friends. At 3, anyone who doesn't serve your needs isn't rated very highly.

     

    Since we couldn't do much in the way of peace brokering at the worst of times, we focused on what we could control - and that was my healthy child's safety and sense of well being. We couldn't always shield her from my son's meltdowns or rages, but we were vigilant in making sure they weren't left alone together and when rages did happen, one parent would remove her from the room and spend play time with her while the other parent dealt with the sick child.

     

    The other thing we did was make a big effort to have "dates" with each kid separately. We tried really hard to let my daughter (who was 3 at the worst of it) know she wasn't losing her parents or always have to compete with a disease for our attention. We also did family therapy and some role playing with Polly Pockets so the kids could say things about the dolls that they were afraid to say about each other. Mostly both kids wanted an insatiable amount of attention and we just had to try to give them as many "normal" moments as possible.

     

    There's not much you can do to make anyone else feel they way you want them to. All you can do is make them feel safe and understood and important to you. Their relationship will evolve many times. So don't be hard on yourself and just get as many hugs spread around as you can.

     

    (BTW - my kids, now 5 and 7 - who once hated each other, are currently in a love fest. This too will pass. They keep you guessing - it's in their job description - PANDAS or no PANDAS).

  8. LLM- I have been forbidden to say the G- word in Julia' room! He he he. (but, she is doing well- she now usually makes herself just get used to stuff).

     

    A few weeks ago, my 28 yo niece (who lives with us) walked by my daughter's room and heard her arguing with herself. She was standing in front of her underwear drawer (unaware she was being watched) and arguing with the wet fairy, saying "I can so wear underwear. I will too get used to it. Stop trying to ruin my day!"

     

    Now, when my niece first moved in with us last summer, she might have been alarmed that my 5 yo was talking to herself like some schizophrenic. But after a year of living in our house, she came downstairs with a smile on her face and said 'You'll never guess what an awesome thing I just heard!" Don't you just love when they internalize, even when some days you feel like all you're doing is being the bad guy/nag?

  9. DC Mom taught me the term "GUTI" - get used to it - that we've been teaching my daughter, (potential for PANDAS but nothing concrete) habituating her to underwear. I have the "Out of Synch Child" on the night stand, but haven't gotten very far yet.

     

    We too sometimes have "out of synch" conferences where I walk in thinking, based on my son's reports and things I see at home, "this is going to be great" - only to go home all deflated and confused...

     

    Like DC Mom , I wondered if the teacher is seeing PANDAS related ADD or OCD (I posted last week about how my son's OCD made him think someone was staring at him and he couldn't get his work done because he kept looking around the room but the teacher saw it as ADD - they can look so similar). I also wondered if there's some choreiform movements that are being mistaken for fidgetiness. It's not just piano-playing fingers that show up. Lots of us have gone to see a PANDAS doc and had them show us tics or movements we never recognized.

     

    So my gut reaction is that you should keep reading Out of Synch to help you understand the sensory aspects, but that you're probably dealing with the sensory manifestation of PANDAS rather than a separate "issue" or diagnosis. The odd interpersonal episodes could also be PANDAS related. if not, they'd need to be dealt with differently, so it sounds like more digging is needed.

     

    Not sure if your doctor is local or one of the experts, but if practical, it may be worth arranging an office visit and exam to make sure things are as low level as you've been thinking they are. Not trying to say they aren't. But there's a disconnect somewhere between home and school and your son's perceptions. Sounds like you need some current medical info for this puzzle to make sense. I've had lots of times where something isn't quite right and weeks later I come to find out there was a medical reason behind things that didn't make sense at the time.

  10. Dr. K says without IVIG, no cure. He has treated 500 patients. Have you and he spoken about this issue, compared notes and cases and figured out why you differ in this area?

     

    I hate the word "cure" - it offers such hope, like you might be able to go back to that pre-pandas time and live happily ever after. Cancer survivors don't use the word. I think even if they stay in remission forever, mentally, they can never go back to a "before" time. Hopefully, our kids will get to that place of having no memory of this, but I'm not we parents ever will. I personally wish our doctors wouldn't use the term until there's been a very solid, published longitudinal study with extensive follow-up. Having a patient not come back to you isn't necessarily a "cure".

     

    I agree with you, Alex, that the IVIG/pheresisquestions are the hardest ones we face. It has such heavy significance and consequences for the whole family (will it work, what sacrifices can we make to pay for it, what are the costs of doing it v. not doing it?) It's like having to pick a future for your child without enough information to know if you're making the right choice. I feel like I'm playing "let's make a Deal" with my son's life and we just might pick Door #3 with the boobie prize.

     

    I strongly feel more across-the-board information needs to be known about every kid who undergoes IVIG or pheresis before you can say if they "work" or are a "cure". Many on this board tell stories that make you wonder why IVIG is successful for some but not others. What was the child's quantitative IG levels? How long were they sick? Are they immuno-deficient, have a specific antibody deficiency? Have other immune system abnormalities? What was the infectious trigger - just strep, other bacteria, viral? Does time of year matter - if you get IVIG during the summer and aren't exposed to school germs, do the new antibodies have nothing to do and so do nothing to "tutor" the body? If you're exposed to an infection a few weeks post-IVIG, do the new antibodies help protect you or does the infection screw things up before the new antibodies had a chance to fix things? Does it work like a vaccine - where you're not protected by a vaccine for a few weeks until your body has a chance to whip up a new batch of antibodies against the agent, but if you stay healthy, you're then good to go for years and years?

     

    I'm in way over my head when I start talking about the immune system and IVIG. But I always feel like advocating for a treatment without looking backward at why it works sometimes and not others is just not being fair to parents who are facing big time decisions.

     

    I know Dr K has extensive experience. I respect that he's earned his right to speak from that experience. But I get very nervous when anyone - pro or anti pandas - starts speaking in absolutes instead of on a patient by patient basis. There simply is not enough known or documented (IMO). In this aspect, I respect dr L's approach, which is very case specific. In her radio interview, she says that abx works for some kids and if you catch it early, that might be enough. That there's no one size fits all treatment. I know Dr K feels very strongly this is not the case. However, only you are the expert on your child. Follow your heart - it's your best guide right now.

     

    Laura

  11. I'm looking for a pediatric neurologist or psychiatrist in Massachusetts, Connecticut, Rhode Island, or New York (in that order) with specific experience in--and willingness to consider--treating PANDAS with immune modification therapy (IVIG or Plasma Exchange) and long-term antibiotics. Does anyone know of any?

     

    Thanks.

     

    Dr Bouboulis is in southern CT (Darien & Stamford) near NYC. He does IVIG in his office. Yale refers their Pandas patients to him for IVIG. 203-655-9904

    Dr T is in northern NJ (Ramsey) 201-236-3876

  12. I want to put a little history into this discussion. Like I said last week, I didn't wake up one morning like Phineas and Ferb and say "hey, what do I want to do today? I know, I 'll speak at a conference about my son's mental illness."

     

    Last October, a friend emailed me the night before Teri Arranga (Director of Autism one and host of an internet radio show) interviewed Beth Maloney. I wrote Teri an email and gave her some information about pex and IVIG because I don't agree with Beth's opinion that these treatments are too risky. That led to several conversations with Teri and she asked me to write an article about PANDAS and our story, which was published in January's edition of the Autism File. She asked if I'd be interested in speaking at the May conference so that parents and doctors who live in the autism world might learn more about PANDAS. I told her she should try to get a few doctors to speak, as that would paint a better picture. She invited Drs Swedo, Cunningham, Dr L and Dr K and they all accepted. She then asked if I'd co-present with Dr L so that a parent's personal story could illustrate what the doctors were saying (my son is "classic PANDAS with both tics and OCD and no rising titers, we have done pex, he has had remissions but not lasting and we are considering IVIG - so we're in the middle of the journey just like most here). Lynn called Teri a while after this to ask about registration info, since the AO website only said "coming soon." Teri and Lynn talked about Lauren and how she wasn't "classic' but had PANDAS nonetheless (diagnosed by several doctors who all agreed). Teri then asked if Lynn and Dr T would co-present on the non-classic side of things.

     

    None of this was pre-planned. It evolved. The night I got my first email about the Maloney interview, Diana got the same email. At the time, she was focused on other things - equally if not more important. At the time, I was talking with her (and 7 other moms) about starting a non-profit. We had a few conference calls. Eventually, none of us could make the enormous commitment required. I felt I'd be better at smaller projects that didn't take me away from my two small kids. Others either needed to tend to sick kids or follow other ways to help 'the cause'.

     

    Every day, we all have opportunities. We can tell our pharmacists, we can call our local NPR affiliates, we can contact Shelia Rogers, we can speak to our kids teachers...some days, we're up for the task. Others days are pull the blanket over your head days. I have enormous respect for Diana and Lynn and Beth Maloney and every parent who helps move this discussion forward, for every parent who "fishes" on other forums to find parents who are looking for help and whose kids may be mis-diagnosed. Each of us "saves" kids and educates our doctors as best we can. The one thing I would ask is that this not be turned into something where parents have to 'pick sides'. There is an enormous amount of work to be done. No one can do it alone. There is no "one' authority on autism. There will never be "one" authority on PANDAS.

     

    If something helps my kids, I will see it as a good thing and support it as best I can. If something draws the conversation into the muck, it does nothing to help my kids and I will run far away. If there are "enemies" they are the voices that keep us from getting research and answers. We should avoid conversations that pit us against each other.

  13. So worrieddads boy is having some thoughts of people watching him, and that is the distraction. Is it OCD, not sure, but something to think about.

     

    Faith

     

    Just a note - it's my son who had the feeling of being watched, not worried dad's - and yes, that incident was certainly OCD - a checking compulsion. But there are other times he doesn't seem to be able to focus or sit still and will be near tears because he doesn't understand what he's supposed to do on an assignment (even tho when he's healthy homework only takes him 5 minutes). So in our case, I think there's both, along with hyperactivity/mania. So we're trying to help my son learn to cope with both. That's why I was wondering what tricks others might have up their sleeves.

  14. I'm pulling this question from Worried Dad from another thread because I wanted to see what ideas everyone has on ADHD -

     

    "has your son started exhibiting any ADHD tendencies? Since the OCD has receded, this has become more of an issue for our son: difficulty sitting still, focusing, concentrating on homework for any length of time. Have you seen this?"

     

    When we had a setback in January, my son had terrible ADHD/OCD mix. One day, the kids were supposed to work on independent work for 30 minutes and the teacher emailed me, saying that she could not get my son to concentrate for more than 30 seconds at a time, despite constant reminders. When I asked him about it later, he told me he kept having the sensation that someone was staring at him and he had to keep "checking" and looking around the room to make sure no one was staring. As soon as he started back to his work, the feeling/compulsion would come back. So this was OCD presenting like ADHD. Other times during homework, he seemed to have genuine ADHD and could not stay focused - very frustrating for both of us.

     

    We started a prednisone burst and things got better. But in the interim, I met with the teacher and we talked about OCD and ADHD and Pandas. I explained to her that my son isn't really motivated by "pleasing others". He has never really cared about pushing himself beyond his comfort zone just to make someone else happy (unlike my daughter, who lives for praise and affirmation). I also explained that when you're sick, the things that work to motivate "regular" kids don't work as well. The teacher had gone home the day before with a stomach bug. I said "When you felt horrible, you wouldn't have been motivated to stick it out just because someone would compliment you. You went home. But if the reward for sticking it out was $1000 or a week's vacation, you probably could've forced yourself to make it through the day." When you're not feeling well, sometimes the rewards have to be higher to get you to push through the hard stuff.

     

    So we developed a reward system to help my son with his ADHD. My son and I developed a "menu" of items he could buy with "attention points" - points the teacher would give him every time he stayed on task. 8 points would buy an ICEE at the grocery store, 20 points would earn him staying up late on a Friday night or being able to eat junk food for breakfast, 50 points earned him a family trip to the ice skating rink. So if he had a bad week and only earned a few points, he could still get a reward. But if he really tried and was willing to "bank" his points over a few weeks, he could earn something really big (he generally earned 3-5 points per day). Of course, things got easier as the prednisone kicked in and the PANDAS went away, but he was still rewarded for learning to fight back and take ownership of his actions as best he could. Praise or stickers wasn't going to cut it.

     

    We use a similar reward system for ERP, with different rewards. I was wondering what other things parents do to help with either OCD or ADHD...

  15. In fairness (and I know you don't mean otherwise, but for those that were not there), it was definitely more of a moderator issue than a OCD community issue.

     

    Yes, definitely the moderators who had the issues. Most everyone else either skipped those posts or wanted to know more. And I did just post "another PANDAS post" ^_^ on that forum in response to a newbie post. So it hasn't stopped me, just made me bite my tongue temporarily. And I just got one of those" best gifts" - a follow up post from one of the moms we collectively educated, saying her daughter was on abx and they saw some signs of things toning down. Nothing conclusive, maybe it's not PANDAS. But the parent now has information, and that's always a good thing.

  16. Yes, all we want is to get our kids well. Labels and categories are useful, but then they can pull us apart too, rather than together. Like SF Mom said, I really think of this as PAND, and what pulls the trigger (strep, lyme, myco, other!) is the individualizing factor. My hope was that anyone coming here, or already here, would carefully consider all possibilities as it relates to underlying infection.

     

    The recent experience on the OCD board was an unpleasant one. It was surprising in a way because in general, the OCD community has been more accepting of PAND than the TS community (among doctors AND patients). It makes me feel like PANDAS is "coming into its own" as the community starts to find kindred spirits among the other autoimmune communities (tho I sure wish you guys had a happier ending in sight - I must say your continuing uphill battles doesn't make a good recruiting poster).

     

    I'm curious, as I don't know anything about the lyme community - do you deal with the same kinds of fractures that exist in the autism communities or are you generally more united? I worry as PANDAS matures that we will split over treatment debates, disagreements about where any (yet to be found) funding should go, etc. Right now, we're all survivors of a ship wreak sharing a few life preservers. Put us all in a boat with a little less desperation and I worry about how well we will or won't get along... Goes back to my "married to our ideas" post earlier this week. I too hope we all remember to be open to possibilities and that there may be no "one" answer.

  17. Is your current neuro the same one who's been treating the kids all along? If so, I'm not sure how optimistic I'd be about changing any minds or getting any new treatment options.

    We've traveled to Dr L - 9 hr drive each way - but it saved us immeasurable time in the long run because we got the proper diagnosis and treatment plan. So I guess my advice would be to drive to Bethesda and think of it as an investment rather than a day or two of travel.

  18. I just wanted to post a "thanks" to the recent lyme authorities here. Some of us belong to an OCD parents forum and a few weeks ago, the Pandas parents were on roll trying to educate/inform. Admittedly, we got a bit zealous (can you imagine that?). But we were spurred on by new parents who kept asking questions. Then came a backlash from the forum's moderators, who felt we'd hijacked the forum and the discussions were getting "out of balance." It was "suggested" that we email parents instead of using the forum to disseminate information.

     

    The experience left a bad taste. I still "fish' on that forum, antenna up for possible cases that could be Pandas. But I'm still irked.

     

    So I wanted to make sure the lyme posters had a different experience on this forum. We just want our kids to get well. So any and all information that helps get us there is great. I think it's fascinating how similar the two diseases are, and how Pandas seems to be on the same controversial, glacially slow path toward progress. I think we need to hijack the Lyme experts and get them on the Pandas trail too.

     

    I've had a few discussions with people about whether having PANDAS on the DSM V would be a good thing. Personally, I want it far away from the psychiatrists. It's an autoimmune disease. Not a psychiatric illness. So I'd rather start grouping it with Lyme, Lupus, Celiacs, Chronic fatigue...

     

    So thanks for educating us. Pandas parents can be a royal pain in the patutti, but we at least enjoy learning...

  19. I guess what I'm trying to determine is if dd could even have a GAS infection if she's been on Amox for 3 weeks, without any missed doses.

     

    My son is on 800mg/daily Augmentin and was just diagnosed with a sinus infection yesterday. Doctor said it' must be a strain that's resistant to the pencillin family and put him on 14 days of zithro (he'll go back on augmentin for prophylactic purposes once the sinus infection is cleared).

     

    My daughter and I just completed 10 days of Ceftin for the same sinus infection. My son started having post nasal drip earlier this week but I didn't put two and two together because I figured since he's on augmentin, it had to be viral for him. Not so. So now he's on zith and his doc told me to call my own doctor this morning and get another 10 days of abx because my infection isn't cleared (so Ceftin - a relative to the penicillins, didn't do the complete job, which supports the thinking that this particular bacteria resists the penicillin/cephalsporin families).

     

    Amox and augmentin kill a lot of stuff, so until we get sophisticated enough to be able to type a bacteria strain as rapidly as we can do rapid strep tests, it's the stuff that gives you a high chance of killing whatever 'it" is. But it doesn't work on every strain of bacteria and therefore, yes, you can get a strep infection while on amox.

     

    For whatever it's worth, my daughter has also struggled with recurrent bottom issues - what looks like impetigo, but could possibly be something else - pediatrician isn't 100% positive. 10 days of Cefelaxin didn't knock it out. A second 10 days of biaxin did. We've started adding a capful of bleach to her bath water twice a week. No idea if it will help, but it isn't going to hurt and since 3 people use this tub, including my Pandas son, it's one of those things that at least makes you feel better for doing 'something".

  20. anyway dont want to go off at a tangent but I am truly shocked by that cost!

     

    yeah, won't go there. In new england, it's a 4-6 month wait for a neuropsych eval, $2000-$3500 paid in advance, and our Pandas doc told us don't do it - they will certainly find delays and issues with your child - the basal ganglia is injured. But they won't be able to tell if its caused by Pandas. So get your child better first, then decide if there's anything left to investigate.

     

    I have a mom friend who's waited months for an appt with Dr N from the book and its $1200 for a 2 day workup, plus labs, paid up front. So you can see why the Cunningham test starts to look like a good deal.

     

    Pex is $23K if insurance won't cover it, IVIG $10K. But heaven forbid we give our kids antibiotics (all of my local pharmacies fill amox prescriptions for FREE). Things that make your stomach turn and blood boil... These are our children for goodness sake.

  21. We also understood that the test was not a diagnostic tool but rather a strong piece of evidence that we were on the right trail. For us, it gave us a numeric report that we could use to show doctors that something abnormal was happening. Together with our clinical history, it became a very strong piece of evidence. So for parents who are trying to compile evidence, I do recommend the test. Yes it's costly, but it's comparable to the cost of an office visit with a neurologist and its far less expensive than a neuropsych evaluation or developmental pediatric eval. So for some cases, the Cunningham test may be the best way to allocate money if it gets you further along the diagnostic trail than an inconclusive physical exam by a doubting doctor. So long as its understood to be a peak under the hood rather than a definitive answer (which is also all that a physical exam is as well)

  22. how quickly did you see the steriod work....was is during or was it post burst?

     

    We did 2 weeks full dose then 2 weeks taper last June. Saw changes around day 6-7 (he'd been sick for 10 months) . We saw an uptick in symptoms at the end, but a week later he had a T&A and he improved greatly after that. That's why I say the infection needs to be eradicated first. We think the strep was in his adenoids.

     

    This past Christmas, he had an episode from exposure, not infection. Did three weeks of pred, with each week a lower dose than the one before. Saw improvement around day 5-6, about 90% at end of week 2, then 99% by end of week 3, 100% after that.

     

    So our results were during the pred, but we also did more than 5 days each time. I don't think we'd have gotten a good response with just 5 days in either episode. Heck, even for poison ivy, they give you 10 days. But that's just my opinion based on our own experiences.

     

    A side note - if your child doesn't swallow pills, request prednisolone instead of prednisone. It tastes way way way way better.

  23. I know Dr K only used steroid bursts for diagnostics (I think)- but if steroids have worked for pixie in the past, you may want to consider.....

     

    I don't want to start the same argument that happened on another thread about prednisone. I absolutely agree that kids who might have TS should be forwarned about the effects pred might have for them. But since you know that's not the case for Pixie, I have to second what DCMom said. Contrary to Dr K's experiences, prednisone put my son into a complete remission after his last episode. I think you need to make sure the infection/triggering agent is eradicated first, but our personal experience is that if this is done, the pred calms everything back down on a more permanent basis, much like it does for asthma. (assuming the asthmatic doesn't go back into a dust storm)

  24. However, we can speculate all we want about Laura - as she is clearly a bold mom!

     

    No need to speculate. I am just a mom - who has trouble not speaking my mind.I didn't set out to be a public speaker. Last fall a friend emailed me about Beth Maloney's upcoming interview on Teri Arranga's radio show. Since I respectfully disagree with Beth's opinions on IVIG and Pex, I emailed Teri with some information about both procedures. That led to some long phone calls and then Teri asked me to write about my family's experiences, which was published in the the Autism File in Jan. That led to a conversation about the Autism One conference and how some presentations on PANDAS might help some of the doctors and families there learn about the disease and how it could be a piece of their personal puzzles. That, in a round about way, led to a chance to give a similar presentation at the IOCDF conference.

     

    So I didn't wake up one morning deciding to tell the world about our story. It evolved little by little. A year ago when Diana sent out an email about the A&E show Mystery Diagnosis, it sparked a debate about whether families would ever be willing to share their stories. At the time, I thought no way would I ever "go public". I guess never say never. But I'm no expert on PANDAS, I'm not out to become "famous". I'm just an expert on how PANDAS presents in my son and I'm only out to try to keep my grandchildren from going through the same ordeals we've gone through.

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