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Showing content with the highest reputation since 05/22/2018 in Posts

  1. 3 points
    Priscilla

    Possibly PANDAS?

    Funny I just got a notification from this response. I have not been on this forum in a very long time. I am so happy to report that I have a very healthy happy 16-year-old daughter who is no resemblance to the child that was in such turmoil. I will however say it has contributed to the person she is kind, compassionate and confident. I just went for an IEP meeting today which we did not even try Start one until eighth grade where things got worse before they got better but I have to say once over the hump of entering puberty things really started to balance out. She has not used one accommodation from her bare bones IEP she has good grades healthy social relationships and almost no residual OCD. I hope this gives hope to the parents that are going through this. My main advice and one of the hardest lessons I learned and she actually helped me see it was not turning her into something that needed to be fixed with all the desperation of trying to find her help she did feel like that for a time. Funny once I excepted exactly how she was whether it was going to last forever or not is when she started to get better. Sending love and good vibes to all of you and hope for a better day.
  2. 2 points
    bws1565

    Why not start antibiotics anyway

    Jumping in with a different perspective. Was your son vaccinated? Vaccine adjuvants are designed to cross the BBB, specifically aluminium. There was much discussion on this site that Pandas is a version of aluminum toxicity. With vaccines, the aluminum is designed to hold onto the antigen and keep it in the body long term; thereby introducing antigens into the brain as well. It is believed that detoxing from aluminum and mercury helps quiet the immune system. We have tried selenium for mercury, malic acid for aluminum and other stuff as well. She is probably not all clean, but definitely is aluminum sensitive- she cannot tolerate aluminum based deodorant. She is currently using Diatomaceous earth for a slow detox for everything. I think it is helping well. I have learnt about vaccine reactions about seven years ago, and have not vaccinated my kids since. I have 2 totally unvaccinated kids, and several partially vaccinated. It is a CRIME what pharma is doing to our kids without knowing the long term effects. I can honestly say, VACCINES ARE NOT WORTH IT! Which parent would not nurse a child through a bad case of pertussins or measles, and even sweat the time through the a hospitalization for physical problems versus dealing with what we are dealing with here?!!! Just venting my pain. I wish I would have known about this issue many many years ago.
  3. 1 point
    Chemar

    Possible PANS/PANDAS or Tourette's

    Hi there I just wanted to welcome you to the forum tho sorry for your child's struggles. Hopefully parents more knowledgeable than me re PANS/PANDAS will soon reply, but my understanding is that Tourette Syndrome and PANDAS are not mutually exclusive, and that yes, some kids are dx TS when in fact it is PANS
  4. 1 point
    h202

    Does PANDAS always have OCD and tics?

    We have a son who likely didn't have any significant tics or OCD relating to PANDAS. His primary symptoms are rages and increased hyperactivity. He had adhd symptoms from birth, but the rage and extreme hyperactivity came out of the blue when he was 6. He was always a quirky kid, but during the 6 months of his initial onset, many doctors and therapists and teachers suggested autism. After two months of abx and some trials of steroids, most of the problems had completely disappeared subject to periodic flares. Our situation is muddled by his pre-existing adhd diagnosis. He was already on adhd medication for his hyperactivity. It has been very hard to untangle four possible sources of behavior: (1) regular evolving behaviors of a 5-7 year old; (2) adhd; (3) pandas; or (4) adhd medication. Several months before he fell off the pandas cliff, he started having some increased problems in school. We increased his adhd medication. In hindsight he had a bunch of minor symptoms crop up between the time of increasing his adhd medication and his "pandas cliff" moment a few months later. Tics: Throat clearing, swallowing, sniffing, but usually only during concentrating on an activity. A significant increase in a complex stereotypy that he'd had since infancy. He developed a significant fear of spiders, bugs, hurricanes and sinkholes. But not serious enough fears that they interfered in daily life. In hindsight, we have no idea if all of this was pandas. Or caused by the adhd medication. It took almost a full year to tease out what symptoms came from what (and honestly, we are still working on it). The rages and increased hyperactivity went away on abx, so we are sure they are pandas. The fears mostly went away when we changed his adhd medication. The tics and stereotypy lingered. And then we stopped his adhd meds altogether over this xmas break, and both tics and stereotypy 90% disappeared. His pandas specialists never though the tic was from pandas - because he only did it when he worked on certain activities. And she never thought his fears were sufficient to count as pandas OCD, because they were pretty minor. She said that anecdotally she has seen a subset of pandas kids who don't exhibit classic pandas (ocd and anxiety) but instead show as more autism/stereotypy/hyper -- and that these kids are often adhd/autism-light kids to begin with. Which describes my son. Not sure if that helps your question.
  5. 1 point
    mmw

    Does PANDAS always have OCD and tics?

    When my son was young we thought he was very sensitive and had a difficult temperament. He eventually did get tics, hallucinations, you name it every time he had strep but before that he was just a VERY difficult child when it turned out he had strep. Like having to be physically pulled out of the car at preschool. He never quite seemed to know how to act either- lots of social issues. We treated with abx for years and did Brain Balance and all of his aspie symptoms went away. When he did have an episode of rage it turned out his younger sister had a simmering strep infection. He is now 18, totally healed, sweetest and the most laid back guy you would ever hope to meet. It was the PANDAS. It is gone .
  6. 1 point
    mdl, We knew our daughter had processing issues when she was 2 years old. But we never really thought of pandas. I think of some of these conditions are connected to a compromised, or hypersensitive immune system. So PANDAS is probably a side effect of something else, rather then the cause of all of this. The OCD was sort of as you described. Like if a child hit her, she might tell that story as her greeting statement as if it just happened. "Ellie hit me, right here on the arm" for months after it happened. But that might be the only sign. When the PANDAS hit, she suddenly wouldn't go to some restaurants, checked the locks at night, was terrified of bridges, limited diets, no one could say "blood" without her freaking. I literally had to read her science book to her and replace the word "blood" with "red stuff." But things are much better. There was a freaky event back in October where we went to a restaurant and the wall (2 stories high) was literally covered with spiders. Anyone using the handrail would have gotten hundreds, maybe thousands of spiders on them. She couldn't see them in the dim light, so I told her to stay away from the wall. So she looked closer. Ran to the car and screamed and cried for an hours. We just went back to that restaurant yesterday for the first time. So, even with the PANDAS being low key, it took her months to process that event enough to go back.
  7. 1 point
    mdl

    Does PANDAS always have OCD and tics?

    For a long time we thought that our daughter had one of the rare cases of PANS without OCD until we figured out that her OCD just didn't look like the typical manifestations of OCD. Sometimes she would get stuck on something and not be able to let it go or she would be very negative about everything. She was actually having obsessive thoughts that fit an OCD pattern, but there usually were no particular compulsions that went with the obsessive thoughts. Later we also realized that there were obsessive thoughts underlying some of her behaviors and she just never articulated those thoughts. No one knew what was going on in her mind except her. Now that she's a bit older we have lots of conversations about what constitutes a normal worry and what is an obsessive thought and we have a window into her mind that has helped us to help her. I think it's also has been a relief to her. For a long time I read list after list of OCD symptoms in kids and nothing seemed to fit. I don't know if this is common for PANS/PANDAS kids, but her OCD didn't fit anything I read. She's doing much better now, but has some lingering symptoms that come and go, and it's only been more recently that we've seen some more straightforward OCD symptoms.
  8. 1 point
    When I was young, I used to take apart old computers, turn them on, and then watch what happened as I took my ground probe and touched different circuits. I could get all sorts of colorful patterns on the screen, but oddly, never the same pattern twice. I think PANDAS is a little like that. The immune system goes crazy and generally in a predictable way. But it's also different with everyone and even within the same person, it changes. I know my daughter has pandas, but right now, I wouldn't say that she is really OCD. She has been really bad in the past, but right now, it doesn't hamper us too much. To me, most mental issues come down to identity. If something in my daughter's day implies that she is stupid or fat, she gets super distressed, even suicidal, filled with rage, and then depression. This is tricky because kids aren't dumb. If you do too much for them, they think they are stupid and that can trigger a downward spiral. But, if you don't do enough, or imply that they need to do more, it can trigger that they are not loved, and BOOM. I think, because of the increased sensitivity because of the over-active brains stuff, destructive mental loops can be very harsh on these kids. I try to set rules that are "necessary" and be pretty lax on other stuff. My daughter likes to change clothes 10x a day, then complain there isn't anything to wear. Convincing she that wearing something twice, if worn for a short time is OK, has been tough, but laundry is once a week. She has to work within that. She doesn't like it, but she doesn't freak out anymore. I don't lie to my kid, but I think of things to say that can build her self esteem back up. Getting her to realize that she WILL get her feelings hurt and need to continue on has been tough. Just today, some off handed put down from her cyber school teacher had her in a tizzy for 15 minutes. But, it was only 15 minutes and not 6 hours (or even days) like it has been in the past. Suicidal feelings are actually confused survival instincts. When the consciousness feels like it has changed too much from what it was, or has been rejected by those it loves, it wants to hit the reset button, (assuming its self immortal (which is another discussion.)) So, the suicidal expressions can really require some quick reassurances that you still love them and even if this stuff is really crazy, you will always love them. It can seem like you are carrying a lot of their personal responsibility for self preservation, but having gone through this, that is something that you can teach later.
  9. 1 point
    I committed to feed results back as they trickle in, so here is one such result: For MTHFR A1298C (rs1801131), there were 70 sets of data: - 5 were homo for the risk allele (i.e., +/+) - 23 were heterzygous (+/-) - 42 of them did not have the risk allele at all (-/-) For MTHFR C677T (rs1801133), there were 71 sets of data: - 5 were homo for the risk allele (i.e., +/+) - 26 were heterzygous (+/-) - 40 of them did not have the risk allele at all (-/-) The first result above is a lower count of risk allele than the general population, and the 2nd is a little higher - but neither statistically significantly so, according to how we setup this analysis. Particularly together, the two of them are pretty much like the general population in terms of number of the risk alleles. I hope this result is not upsetting for any that feel these MTHFR SNPs are a significant player in PANS. Because it doesn't correlate wtih PANS doesn't mean that it isn't something of significance for your particular child. So far, we have only tabulated results like the above (how individual SNPs for these PANS kids fare against the general population). We are still wanting to look at other patterns of many SNPs together among the participants, which might show something statistically significant even if an individual SNP doesn't. It can also be the case that for a given individual, a certain combination of SNPs, including these MTHFR ones, work in a way together to affect the disorder. It is really hard to do either of those kinds of analysis with our genetic data though, so we'll see how our investigations of that works out.
  10. 1 point
    Note: This has been approved for posting by Forum administration. For any that contributed to this genetic study that we posted here (and elsewhere) - thank you so much! The cutoff was last night, and we had a great result - 71 sets of data. I will post some tidbits of "aggregate" results here (and in the other groups this was put in). I am wary of posting full results on facebook, because then facebook could claim some ownership. Instead, full analysis results (data in aggregate form only) will eventually be posted here: https://osf.io/pf7q2/?view_only=ba9efeabb38e4a22adced3b5ba4dc5a5 That link above is live to the public now, and you can see (in the last revision of a registration plan), what are the 78 SNPs that we have looked at. We are going to look at many more SNPs, though, and do lots more analysis than what is listed there. The plan was just to lay out in advance what we could declare as significant in this pilot study.
  11. 1 point
    Hi My son with TS/Crohn's had abx sensitivity and we found Olive Leaf Extract, Monolaurin (Lauric Acid), Oil Of Oregano (capsules) and other natural antimicrobials very helpful, including dietary garlic, honey etc. I don't have experience with these and PANDAS
  12. 1 point
    dave401

    PANS - trying to find similar case (DD17)

    I also got pans when I was 14 and I always got strep infections, what worked great for me was having my tonsils out , I haven’t got strep since then 12 years ago. If she’s constantly catching things I think it would help. Adenoids removed too
  13. 1 point
    mamafour

    Information about Plasma Exchange

    Our daughter was treated with plasmapheresis in 2017. She has pandas/Pans but not Lyme (we think?). She was typically treated adequately with antibiotics but for whatever reason we couldn’t get that one flare under control with abx or prednisone, so we went looking for ivig. .. The immunologist we found had more success in his patients with plasmapheresis than ivig. Our daughter’s symptoms were severe at this point. It is also often easier to get insurance coverage for plasmapheresis than ivig, which is curious to me. For all these reasons, we went with plasmapheresis, and would do it again in a heartbeat. I cannot express how life-changing it was. (Two years out we may be needing it again, and if we do, I will be nothing but optimistic going into it.) We are in VA so I don’t think I can help as far as who can treat near you. However, don’t take the “it’s impossible to get in CA” and just give up.... start making phone calls. Call area hospitals and ask if they do plasmapheresis at ALL, regardless of reason. Ask which immunologists order it. Work backwards from there. You are at an advantage because of your son’s age, as the issue is often finding an apheresis unit with the capability of treating a peds patient. Your son is not a peds patient so you already don’t have that barrier! I do not have experience with Lyme related to plasmapheresis. Also don’t take the “insurance won’t cover” without checking your plan on your own. You can call and ask if the cpt code is covered (I don’t have it in front of me but could find it) and whether it needs preauth. Don’t give up. Hope I helped or at least gave hope. Good luck.
  14. 1 point
    We have not gone through similar, so can't comment too directly, only on your statement "...apparently in true PANDAS cases it [OCD] accelerates anxiety and vice-versa?" Well, I would say that OCD, if it starts more slowly in a PANS/PANDAS child, is somewhat calming at first, when it is not otherwise debilitating or noticed by others too much, because there is some satisfaction derived from "repeating it right" when they finally get there. But when it grows much more significant later (or for any person with severe OCD) the sufferer fairly quickly becomes exasperated with how debilitating it is, and sometimes satisfaction is eluded, and so of course that creates plenty of anxiety. So I think your statement is fully true for those with very quick onset of PANS/PANDAS, and eventually true for all. If you can get and afford the ivig, the potential benefits probably outweigh the risks (in my mind).
  15. 1 point
    GAmom

    will Normal return?

    My son has similar behavioral issues. We tried different things, including the Ross Greene method. But, because of his age regression due to the PANS/PANDAS, "normal" techniques didn't work. We ended up doing an intensive CBT program a couple of years ago and now do weekly CBT therapy. He's improved alot. It's still ongoing.
  16. 1 point
    Try posting at this PANDAS group on facebook. It is more active so you will get more replies. https://www.facebook.com/groups/189241844607935/
  17. 1 point
    tj21

    LD vs HD IVIG

    Thanks, @maryangela . Just spoke w/DS18's PANS provider. Confirmed that b/c he was sick going into this latest HD IVIg, it will take longer for everything to calm down. We'll be doing HD every 3 months through November 2019. Good to hear about your DS13. We were also 80-90% improved January-March. Trying to get this current infection under control now.
  18. 1 point
    maryangela

    LD vs HD IVIG

    My DS 13 received 16 weekly LD (1/4 of HD) starting last November. It was extremely frustrating, because he would flare for 3-4 days, then start getting better, but would flare each time he had the treatment. In May of 2018 he had a HD. Huge improvement, which lasted about 6 weeks, then he began to decline. Had another HD two weeks ago. It was like magic. Immediate improvement. He will now receive monthly HD until the end of this year. Apparently, this is AE protocol. Could take 18 months. He is about 80% improved. His symptoms were severe.
  19. 1 point
    edsonr

    My Sons tics, sharing our story

    Hello I just wanted to share my story, and maybe it will help others. I'll try keep this focused and straight to the point. My son started his "noticeable" tics on Christmas eve 2017. Pediatrician said it's command and would go away, just not sure when. I started to get more and more concerned as frequency increased, at times it would be several times a minute. He had motor tics with his arms, then later shoulder shrugs, then neck turning, and facial tic (that we thought were just too much screen time). No vocal tics noticed. He had a bad diet being a bit picky, and would eat lots of candy, he would also get lots of tablet time. I had my share of sleepless nights thinking and worrying about him. I tipped off about the book "Natural Treatments for Tics and Tourettes..."..and that book, lifted my spirits, inspired me, gave me hope, and energized me to help my son. Here's what I implemented at home: (mind you, the night before I started making changes, he was sick with a fever and tic'ing restlessly) Bought magnesium gummies to give him Bought fish oil Cut the high fructose out of the diet started removing artificial flavors and colors cut down on screen time When he was sick for about a 8 day stretch, I started the plan above. He already hadn't been eating much since being sick, but we I started giving him magnesium supplement. He probably had magnesium supplement for about 6 days then he got better. We noticed immediate turnaround, for a good few days I didn't see 1 motor tic, which was going from several times a minute to maybe 1 all day. Just seeing it stop for 1 full day, confirmed to me that there is something we can do despite what the dr's say. We started to be more conciseness about what we feed our kids, and tried to get more nutrients in them. I had to explain to the both kids, that we all need to eat healthier, so we need to stop eating stuff that's bad for us. My son was all in, he always asks now if a certain food is healthy. About 2 months into being more healthy his motor tics were probably 90% gone, but he still had some facial tics. The crazy thing is even though he made great progress, just seeing a tic here and there could still sink my spirits. Thinking about his bad diet and him not being regular with his stool, got me thinking he may have leaky gut and that maybe he's not absorbing nutrients well. I know the battle may not be over yet, but I'm happy to report that he hasn't had a motor tic that i've seen in about 2 weeks, and the last week have not noticed many facial tics. This week he's also been more regular, going #2 every other day (previously it was 1-2 per week). What we're are currently doing: Supplements: Smarty Pants Multi (whch has omega 3) Smart Calm Magnesium gummies (they loooove, the taste of this one) Fiber gummy probiotic gummy Eating / Food: No High Fructose No Artificial Flavors No Artificial Colors Fruit / Veg smoothies Buy Organic when we can Cut down on fast food - there was a happy meal or 2 in the last 2 months Candy is not an everyday thing, special occasions and rewards Other: Cut down screen More board games Playing outside I still allow them to have candy here and there, but nothing like before. I just still want them to enjoy being a kid, so even at birthday parties, I'll let them splurge. I hope someone can takeaway something from my post, I know reading posts from others often lifted my spirits while I was going through some hard times with my childs tics. Feel free to ask me questions.....
  20. 1 point
    My son does not have Lyme, and the Ozone helped somewhat. The Cunningham Panel has become the standard lab used to show there is an autoimmune component to OCD and tic symptoms. Based on the results of the Cunningham Panel, my son’s doctor is treating him for autoimmune encephalitis. Do a Google search on Cunningham Panel or Cunningham Panel PANDAS. You can probably search within this forum also.
  21. 1 point
    Our son also had brief "absence seizures" at the beginning. We eventually tested for lyme, bart, babesia and others, but only ever found ehrlichiosis (another tick-borne infection).
  22. 1 point
    Others have provided some responses, but I would like to offer some input on the freeze while playing piano. Freezing while doing something can be classified as absence seizures. While usually pediatric in nature and outgrown, there is a similar symptom from Bartonella. So if your son is diagnosed with bartonella, this might be something triggered by that.
  23. 1 point
    I am so sorry you are going through a crisis period. Here’s what I can tell you from my experience...Two years ago, we finally found an MD willing to prescribe abx for my DS (now 13). His case was severe. 10 days into the 30-day high dose of Augmentin, be began to rapidly improve. It was nothing short of a miracle. Unfortunately, there was a 10-day gap between the 30-day high dose and the prophylactic dose, and he regressed, and were never able to recapture the success of the first abx. That summer my DS developed a yeast infection, and his symptoms escalated. He was out of his mind...hallucinations, new tics, aggression. For the past two years we have treated him for yeast. We use Gutpro, Saccharomyces Boulardii, and Candicid Forte. We have also tried rx yeast treatments (Nystatin). Had a scary experience with Diflucan, though. Currently my DS is not on abx. When he takes them, it’s always a matter of time before it impacts his liver function, and has to go off. He’s using an herbal antiviral, and he has had many IVIG treatments the past 15 months.
  24. 1 point
    lordchallen

    Extreme behavior

    Without going back and rereading what I might have said about Probiotics. . . . . in my humble opinion, they are a major key to getting this stuff under control. I'm not a doctor, and I don't even play one on TV, but the probiotics that are also called Psychobiotics, play a major role in the stomachaches, the anxieties, the anger, and obsessions. I adopted my DD, she was my great-niece, and we knew that there was some drug use involved during pregnancy. We were vigilant from the beginning. She was diagnosed with Sensory Processing Disorder at about almost 2 years old and we have been working with her on that stuff since there. But almost from the beginning, there has been stomach aches and pooping issues. We thought we had things handled things until they recently got much worse and her anxiety was out of control. Panic attacks at school, in the car, in the stores, at the therapists, etc. That is when the doctor tested for strep and diagnosed her with pandas. She was always getting strep. Anyway, the first probiotic (Culturelle) seemed to help overall. The next probiotic (Renewed Life) I gave almost completely killed the anxiety, but her ability to process frustration and injustice almost disappeared. That was a couple of days that ended in nightmare and the regretted behavior. The third probiotic (Pro-Kids-15) reduced anxiety and obsession and actually improved her ability to process frustration and injustice. She has had a couple of panic attack at school and she couldn't handle the school field trips, (which I drove her too) but overall is doing well. No near-psychotic moments where she tries to hurt herself or run away. I just just can't wait until school is over. I hope to use the summer to help her heal and prep for the next year. And doctors are great people to have your team, but I have found that I can be just as effective in helping my daughter as they can, using safe, non-restricted methods. My DD's doctors are good people, but I think it is impossible for them to care enough to treat this sort of thing. It takes parent(s) that care and know what is going on. Thanks for letting me share.
  25. 1 point
    MomWithOCDSon

    Disrespectful behavior

    I like "The Explosive Child," also, and while it's not specific to PANDAS, necessarily, one of the authors has worked with Dr. Swedo in her research at NIMH, so he's at least familiar with PANDAS presentations. I'm not sure it matters whether the disrespectful behavior is uncontrollable because of PANDAS, or if it's uncontrollable because your kid is so far out of his self-control that he can't stop himself from blurting out rude words or making rude gestures or whatever. I mean, yes, PANDAS can definitely mess with your executive functioning and make it more difficult to display age-appropriate behaviors. But most behavior of that kind comes from a lack of self-control, irrespective of the genesis of the lack of control. Either his brain is physically impacted so he acts out, or his "mind" is emotionally impacted so he acts out, the results are the same. And maybe the same tactics are applicable for the behaviors, as well. "The Explosive Child" has some great strategies you could try, but as I recall, pretty much all of them suggest that you de-escalate any unpleasant exchanges by dis-engaging, taking a few minutes to calm down and dial everything back, and then re-engaging again in a calm, controlled tone of voice and body language to resolve the dispute. Seems to me that could work whether PANDAS or non-PANDAS. I personally think that pretty much ALL non-age-appropriate behaviors (meltdowns, tantrums, etc.) our kids may display during this illness is at least partially -- if not wholly -- attributable to the illness. But then again most "normal" kids will test their limits during the natural course of growing up, too. So, in your shoes, I might ask myself, "Is this behavior I could expect to see out of a 'normal' XX year old?" If the answer is "yes," then maybe you deal with it as you would with any kid behaving that way. But if the answer is "no," I think you still address it, but maybe with a little extra compassion and patience, adding into the discussion something along the lines of, "I know that you're feeling especially out of sorts right now while we get the inflammation in your brain and the other PANDAS stuff under control, but you have to know that speaking/acting that way is still unacceptable. Let's try and brainstorm some things you could try instead of yelling at me/your dad next time you feel this way." My son hated being told he was not acting his age when he'd meltdown over something pretty minor or lose his patience in 0.2 seconds during his PANDAS. But I've got to be honest; I didn't do it to be cruel, but I felt like it was somewhat important that I hold a mirror up for him because I didn't want him to dig a deeper and deeper hole for himself socially. I wanted him to have some outside perspective as to how his meltdowns looked to his peers in the hopes that it would give him some incentive to work with me on some of the "Explosive Child" strategies for dialing things down so that he could "save himself" in some of those outside world situations. It was tough, and we weren't always successful. But I do think it helped him maintain some perspective, especially when he got out of that intense moment and could look at things a little less emotionally. All the best to you!
  26. 1 point
    maryangela

    Disrespectful behavior

    I recommend the book, “The Explosive Child”. It’s not PANDAS specific, but it definitely can apply.
  27. 1 point
    I'm a little late but have to respond because our symptoms change meant that we - who were experienced with PANDAS - completely missed the "after puberty relapse" for 2 years. Our son was diagnosed in 2010 or 11 at age 11. We, the parents found this and worked to show and educate his pediatrician about PANDAS. The symptoms at 11 years old were obvious - vocal and facial tics, tapping and counting, repetitive phrases and eventually only those phrases. But he was a happy ticcer. CBT did nothing as they said he was not anxious or depressed, but he had to do things his brain told him to do. We had this thing "licked" after a year of high dose abx. Flash forward to Spring and summer 2016 - my kid after sophomore year of college - top 5 school, national athlete - suddenly is so anxious he can't interact with high school students at a summer camp. He feels everyone is "putting him down" or "out to get him". Every interaction is stressful and eventually he would not leave the house. His personality changed 100%. He alternated between despair and optimism but often felt completely apathetic. He begged for help, kept saying "something is wrong - this is not normal" but to us the signs were invisible - no tics, no repetitions, nothing you could see. He talked to a counselor (no value). We never, ever thought PANDAS. There was no similarity to his previous diagnosis. However, his mental anguish was horrible and waxed and waned over the next two years until finally last June, after a case of strep that went untreated because he did not have a fever and was refused a swap test, he completely fell apart with intrusive thoughts and irrational behavior. Suddenly his dad said "this is completely irrational - it must be PANDAS" The ASo titers came back at 932, Cunningham Panel (now existed) was 3/5 positive. I'm telling you we had not forgotten about PANDAS but the second time looked so completely different we, who were looking, completely missed it. We're on it now but feel like he has suffered two extra years and we hope we are not too late.
  28. 1 point
    pinkoctober88

    Ketogenic Diet for Tics?

    Ive been researching the connection for the keto diet and tic disorders for a couple years now. I have chronic motor tic syndrome that stemmed from prescribed adderall use in college. Now that ive been keto for a couple years, the relationship is undeniable. I also cut out red40 and most other dyes, sugar, any simple carbs, and some dairy. The results are amazing and my tics are at bay for most of the day. If i have a cheat day,y tics start up immediately and can last for a couple days during my carb hangover.
  29. 1 point
    maryangela

    Extreme behavior

    Wombat140– I am new to this forum, but have read a few of your posts. Your suffering reminds me of my son’s suffering. My son is rarely open to talking about his compulsions, but after dealing with his OCD for years, I’ve determined that all of his rages were due to his OCD being “blown”. Telling him to quiet down only makes the situation worse. The consequence does not matter, even if it involves a neighbor calling the police. Part of my son’s OCD was that he would need me or my husband to do something, but his OCD would not allow him to tell us what it was. For example, when triggered, he would need to change his clothes, then leave our apartment building. I would need to hold the door open in a certain way, but he couldn’t tell me how. He would change his clothes and go in and out of the building hundreds of times a day. One night he repeated this compulsion continously from 7 pm until 7am. He would change his clothes and I would walk around the block with him. It didn’t matter that it was in the middle of winter. I truly didn’t think we would live through this. My son will tell me that he is not being manipulative. The way I see it is that his OCD is manipulating him, which sometimes involves needing others to behave a certain way. He is not choosing to have these thoughts. My son is 80-90% better, since IVIG treatments, which started this past November. I hope you find relief soon.
  30. 1 point
    Annieo

    Paleo vs. Ketogenic

    I started eating a paleo diet about five years ago. It is a commitment in that you can't rely on easy, processed foods. Last summer I started eating a ketogenic diet. Both are do-able. The benefit for me is that aches and pains I've had my entire life are gone. The sinus headaches I suffered from almost daily are gone. In other words, the inflammation I experienced for years is gone. I have not tried the diet with my PANDAS child, but because of the way I eat, she eats far more healthfully than most of her peers. Her PANDAS symptoms are currently mild, although I honestly have no idea why. It's probably easier to try a paleo diet at first, and then if you want you can move to ketogenic.
  31. 1 point
    maryangela

    Extreme behavior

    I found the book, “The Explosive Child” extremely helpful. I would recommend that both you and your wife read it. It discusses collaborative problem solving, but also that sometimes “giving in” to the child is the best option at the moment. It is not worth the child or someone else getting hurt. Unrelated to the book, my son has an OCD issue about being told “no”. He explains that is has nothing to do with getting his way. I think when he asks for something and he’s told “no”, it makes him feel “bad” or “greedy”. I need to be careful how I word my response. For example if he asks for ice cream before bed, instead of saying, “You’ve had enough ice cream today and it’s too close to bedtime”, I would say, “You may have ice cream after lunch tomorrow”. It took me years to figure out that most of his rages were due to someone interfering with a compulsion.
  32. 1 point
    MomWithOCDSon

    Extreme behavior

    I'm so sorry, Lordchallen. That all sounds awful. But, unfortunately, these sorts of "rages" appear to be part and parcel of some kids' PANDAS behavior set. Usually brought on by severe and unrelenting frustration, knowing that their behavior isn't what it once was, isn't what it should be with respect to age-appropriateness, but to a large extent out of their control because their brains are so disordered currently, their executive functioning so challenged. As for why those behaviors seem to get worse or more extreme in the evening as compared to the morning? I had a psychologist give me a metaphor once that painted a pretty good picture. Your kid gets up in the morning and it's a new day; everything yesterday is behind her, and she has a chance to "do it right" today. So the morning is about as full of optimism as the day is going to get. And then she goes to school or goes about her day, and because she's around peers or non-parent adults, she's doing her best to keep it all together. So she sucks up her anxiety and distress for much of the day, trying to "be normal." And like a glass that's slowing filling up with all of that angst and frustration, she's got those reserves, under the surface. But by the end of the day, that glass is full, and at the next incident that's frustrating or anxiety-producing, it's overflowing because there's just nowhere to stuff it any longer. And she's in a "safe" space at home and with her family, so she's not forced to suck it up any longer like she is at school or around her friends or their families. And she probably couldn't by that time of day anyway, even if she tried, because the glass/her reservoir is full, tapped out. It's really hard because you don't want to excuse these rages as acceptable, but at the same time, you know there's an extent to which she can't control them. And she clearly doesn't want to have them, either. I would maybe try a few things. 1) Is there any chance she might have some excessive yeast growth going on due to antibiotic use? I know you're using probiotics, but sometimes that doesn't do the trick for all kids. Excessive yeast can make some kids more combative/ragey. 2) Maybe during a weekend morning or mid-day, you could have a "family meeting" and talk through some strategies with her, while she's calmer and she's in better command of her behavior and her emotions. Let her know you know she doesn't like those rages and is as distressed by them as you are, so let's figure out ways to de-escalate the situation, rather than fuel it. Maybe she can go into her room for a bit and listen to music or just sit by herself or with you quietly for a few minutes until she feels calmer? Maybe find a few things or activities that she finds pleasant and calming that could be brought in when she's overwhelmed or "topped out," if only for a few minutes at a time. 3) Have you tried using an anti-inflammatory in the evenings, like an Ibuprofen? We found that using this as a medicinal therapy after dinner seemed to help my DS to muscle through evening activities (homework) without getting quite so worked up or frustrated. I think it helped tamp down the inflammation enough so that he could think a little more clearly and not have quite such a quick trigger for frustration. WIshing you the best.
  33. 1 point
    stateless

    Possibly PANDAS?

    Many years after posting, I'm checking through old accounts and thought this deserved a reply to give others hope. I notice that I had deleted my messages, but I just want to say that the very typical and rather full-on symptoms typically associate with PANDAS (OCD, inability to speak, eventual inability to walk) eventually went away, but it took a couple of years. He is absolutely fine now and I see this as fitting into how PANDAs can impact some children at a very specific time in their lives. The parents didn't ever get much help. 'Social services' for a while thought that he may have been mistreated (something I knew wasn't the case).. then the doctors switched to a diagnosis of Chronic Fatigue and never shifted from that. It really did appear to match PANDAS though and now he's fine and thriving and it all seems like a nightmare or a dream of old. It's in the past. I hope that others here, feeling desperate due to the condition and lack of help, reach the same place. Thanks.
  34. 1 point
    Sheila

    will these tics ever go away?

    Hi mlee, and welcome to the forums. I'm sorry that your son has been having some tics. Seeking help from a good naturopathic doctor is a great step to take. I hope you will let us know what foods come up as problematic. That should give you some good direction. You can also ask this person for suggestions on nutrient supplements. Charting is also a terrific step, though I know it can seem overwhelming, as you say. It will get easier with time. Keep it up--but also, only take on as much as you can without stressing yourself too much. If your son has a problem with gluten-- and not everyone with tics does -- it can take some time for improvement to be seen. I would give it a couple of weeks, and even then do not expect a dramatic change immediately as it can be a gradual change, and there may be other issues going on as well. Our organization has a new book out on tracking down triggers for tics. You might find it useful. Also, I think it would encourage you, because you asked if people are able to get the tics under control, and yes, many do and some of their accounts are in this book. But it can take a comprehensive effort, not just one or two things that usually bring about all the change. Have you already had a chance to make other changes in the diet like avoiding artificial colors, flavors and preservatives in food and drink? What we have found is that a three-pronged approach can often help: 1) dietary change, 2) avoiding allergens (is your child or immediate family allergic?) and 3) avoiding toxic products typically used in the home like bleach, scented products, pesticides. In addition to the above, you want to be sure there is not an underlying infection. Please get back to us and let us know a little more and also what the naturopath suggests about the food testing. And you should definitely have hope! You have already taken some very positive steps.
  35. 1 point
    Joyle

    Where to find Clerodendrum Inerme extract?

    Hi everyone, Yes, the plant Clerodendrum inerme does work to reduce tics and other comorbids very effectively. We have discovered it doesn't work for everyone but it has helped many. The Facebook group is called Natural Care for Tics and Tourettes. There are lengthy discussions there about this plant which we have nicknamed cleo. It can be taken as a green juice or in capsules after dehydrating and powdering the leaves or as a tincture or as a homeopathic remedy. The only restriction is you will need to source the plant and grow it in a pot or your own backyard. The safety profile of the plant is exemplary. Please also do your own research to satisfy yourselves .... there is a wealth of information about Clerodendrum inerme on the Internet. Kind regards, Joy
  36. 1 point
    My 10 yr old son was diagnosed with PANS by an integrative medicine doctor by the name of Mae Kinaly in Irivine, CA. We live in Manhattan Beach in LA county. She did a ton of blood work, in depth history and immediately started him on azithromycin and supplements. She is a little kooky but I feel is a very in depth doctor with my son's best interests at heart. She does offer IVIG. We also went to Dr. Miroslav Kovacevic in Chiago for a second opinion and ultimately IVIG. Hope that helps.
  37. 1 point
    lysia

    Do symptoms change after puberty?

    I am an adult female. I was never diagnosed with any mental illness as a child, as my parents addressed any psychological issues as solely behavioral problems to be disciplined. That being said, I suffered from very severe OCD symptoms that (I suspect) **might have been a result of PANDAS. [As this was never diagnosed nor treated, it is purely personal seculation based on the symptomology and relative timeline of exposure to streptococcus- I also share other speculations as to possible causes for the disorder, though mostly suspect the former.] I can say that for myself; the OCD began to dissipate very significantly after puberty and continued to do so over the years. I have no significant nor any life debilitating symptoms remaining of OCD whatsoever. The most debilitating and severe period of OCD that I had was between the ages of about (I think) 7-12. However, the habitual thought patterns that I had developed in my brain during that time (mind you with no counseling/medication or understanding of it as a disorder whatsoever) did take a significant amount of years to fully recover; therein many behaviors still remained. I say this because I do believe that it is highly possible that the neurophysiological OCD had in fact been mostly if not wholly eradicated during the pubescent period in which I would had been experiencing many hormonal and chemical changes in the brain possibly countering or overwhelming some others. (Again- this is much personal speculation.) Nonetheless, because OCD is what it is, I find it impossible to consider these behaviors would disappear at the same time. Gradually they did go away. I imagine then on came bigger problems of being a teenager and every little bit by bit the tics and compulsions and obsessions did dissipate. I was VERY secretive of rituals (tapping/counting/hoarding/maaany others) and did them in a way not to be seen. Because of this and that whatever my parents might had known was never pronounced to me as a "mental disorder", I credit my ignorance to having an actual illness in a way to having had allowed me to recover; as there was no stigma or added obsession (i was highly obsessed with everything) that I was handicapped with a psychological ailment. In a way, the denial around me helped. This is NOT to diminish that as a whole, however I suffered far more severely because of it. But it is worth noting i think that sometimes less attention may help with recovery. Overall of course, a child needs their mother so much, and for one with ocd- they really need their mom. I love my parents who did just as they felt best, but during that time (that to this day I remember SO well as being so truly horrifying for me), I didn't have that. I was so extremely confused, shameful, scared, and exhausted. And so incredibly isolated. I am so grateful pediatric illnessness like these are finally recognized and kids now can have amazing mothers like you who are on their side of the struggle with them rather than at the other end of it. No child should have to feel so shamed, scared, and alone. Illness, treatments, recoveries and even regressions are just as any other experiences and trials of life. They are part of each individuals journey into becoming the person they are meant to be. And children are (be them healthy/disabled/'normal'..whatever) absolutely beautiful and perfect every step of the way. This is what I wish my mother would had said to me. So i could have understood that I'm not my illness, but my strength to battle this is part of what makes me so incredible and builds my character into the fantastic person I am to become. (Of course- this and also 'lets see a psychiatrist and get treatment'), but all the same Sorry about the tangent! I came about writing this commenr ( now... memoir) in searching this subject in Google just now out of random curiosity while reflecting upon my past. When I saw your q, I felt I just had to respond with hope because my google search q was: "my pandas ocd gone after puberty". When I read this, I was so inspired by you and what you are doing for your child. Asking these questions, treating her, and being in the fight along side with her. I joined just so I could write this to you to thank you for what you are doing for her and to send the hope to u both that it absolutely goes away. I can only imagine how exhausting and challenging it could be for a parent. But can also know first hand how horrible it is to have the illness, and to go it alone as a kid is beyond awful. So that's it, really. BLESS you mom for taking care of your girl and it absolutely does get better, as I feel that indeed post pubescence changed everything. So yes- hope is there and she WILL recover. I had a fantastic time by high school being ocd free (mind you tendencies there but I feel this is a bit of personal brain wiring and takes lots of time and work . It was NOT like it was before puberty). Keep being the AMAZING kick mom you are. I'm so SO happy she has you. Just needed to respond. [[**As a side note: in respect to the other comment made by a parent in which i felt some ocd kids might be getting stigmatized by the illness and certain behaviors are being either dismissed or over addressed as psych symptoms when in fact they are either one of 2 things: an unrelated call for help or personal struggle environmentally that isn't to do with ocd, or otherwise just a very healthy response to stresses of puberty. I wanted to throw out the fact that nearly every pubescent child/young adult/teen are often incomprehensibly 'nuts by nature' too! Please consider it's a crazy time for them (thier brains, bodies, self identy, sense of life..) and the healthiest girl during puberty can be a total weirdo obsessive anxious nightmare of a kid too I wouldnt had wanted my parents to say to me it was the 'ocd' every time I acted out (either by way of empathizing/diminishing/ reprimanding or whatever) and I could be horrid at times. I fear it would had kept the obsession for me longer and I would had never believed I would be rid of it. . Maybe i would had even used it as an excuse to get away with bad behavior which would had also drawn self identity to ocd and inhibited recovery . A BIG part of breaking this very strong mental lock is to forget it whenever possible. And it is VERY hard to do, but a beautiful thing when it happens. And each instance builds into healing. Sometimes it is rare and fleeting. Sometimes it is overwhelmed by something else negative (like even some nutty teen drama being created). I would just hate a reminder if it wasn't on my brain already. So i say, if they are being teen brats and it is not 100% textbook symptomatic of OCD, then dont call them out on having a psychological illness, call them out for being brats! (Just my opinion)]]. Good luck to you and your amazing kid. You're really a hero to me. Truly. Much love.
  38. 1 point
    ALSO NEED SO. CAL DOCTOR: We are brand new to the PANS or PANDAS idea and are looking for a PANS or PANDAS dr. in So. Cal. My daughter had acute onset symptoms of anxiety, OCD and ODD (which we didn't immediately identify) two years ago at age 14. She went into screaming rages, insisted on sleeping with us in our room, didn't want to ever be alone, and had extreme behaviors incl. jumping out of a moving car. We thought it was extreme teen rebellious behavior. We started w/ CBT and In the chance that something neurological was going on, and that it was possibly food related, we instituted the Feingold diet which removes all artificial colors, artificial flavors, and artificial preservatives (primarily BHT, TBHQ, and BHA). It also decreases the amount of salicylates taken in from whole foods. We also found that she reacted strongly food high in oxalates. The CBT and dietary changes have helped esp. w/ the ODD but she's still struggling w/ focus and OCD behaviors. We really need to get to the bottom of this if possible. It's crippled her high school path completely. We're looking into Dr. K in Irvine, but I'd like to know if there are any others. PM is fine. Thank you for any suggestions.
  39. 1 point
    Hello, My son has been suffering with PANS/PANDAS since age 8. He is now 14. He was diagnosed at age 11 by a PANDAS doctor after a few years of having standard mental health treatment without success. After two years of antibiotics he received IVIG and six week post-IVIG became significantly worse. Our doctor had never seen this before. We called Dr. K. in Chicago who said my son probably still had strep in his tonsils. We were unable to get a doctor to remove his tonsils based on the PANDAS diagnosis alone. One ENT gave him clindamycin which has a history of getting into tonsils better. His PANDAS doctor then ordered the Cunninham Panel which was negative. My son did not want to participate in their study. We were left with returning to conventional neurology for the tourette symptoms and psychiatry for the OCD. A new neurologist/psychiatrist (a conventional mainstream doctor) heard our story and thought we should try the IVIG again. We did a second round and my son improved greatly then after the third round he's like his old self (as much as I can remember him after all these years.) It feels like a miracle to me. Although he's not 100% better it's remarkable enough for everyone in his life to notice. I'm not sure what helped this time. Maybe the clindamycin before the IVIG? Do not give up based on a Cunningham Panel. It is still experimental. I was crying when the doctor told me it was negative and IVIG would not work for my son. I was certain it was PANDAS. They (Cunningham) are still looking for markers and the current panel does not cover all possible markers which is why they ask families to participate in the research to find new markers. If I had turned down the offer for more IVIG based on the other doctor's recommendation from the results of the Cunningham Panel my son would not be on his way back to wholeness today. His tics are almost completely gone after years of severe tics and anxiety is very low. Almost normal. Of course after years of being in the grips of PANDAS my son has much catching up to do with peers. We still have much healing to do. I'm not sure he will ever catch up but at least now he has a chance. Good luck to everyone. Eva
  40. 1 point
    Hi, I've read several testimonies/blogs were essential oils cured PANS/PANDAS in children. Young Living Oils has the Raindrop technique with specific oils for autoimmune disorders. I reached out to PANDAS Hope for Healing twice last year and never got a response.
  41. 1 point
    lnn

    homeschooling/schoolwork and pandas

    Welcome to the forum and "welcome" to Pandas/Pans. I've unfortunately been at this for many years, first with my now recovered son and now with my daughter. I home schooled my daughter last year because her health was too precarious. Because it was only for one year and we always had the intention of returning to public school when she was able (for social reasons), our approach was probably different from yours. But I'll share what worked in case it helps. I think the biggest thing that was helpful was mindset. Like your daughter, mine went from being very capable to being very handicapped in what she could handle in terms of workload and abilities. There's a medical reason for this - inflammation in the brain creates what's called a cytokine storm. There are many inflammatory cytokines that become elevated, but one - CaM Kinase II - is essential for learning and memory - from Wikipedia: Ca2+ /calmodulin-dependent protein kinase II (CaM kinase II or CaMKII) is a serine/threonine-specific protein kinase that is regulated by the Ca2+ /calmodulin complex. CaMKII is involved in many signaling cascades and is thought to be an important mediator of learning and memory.[1] Misregulation of CaMKII is linked to Alzheimer’s disease, Angelman syndrome, and heart arrhythmia.[6 https://en.wikipedia.org/wiki/Ca2%2B/calmodulin-dependent_protein_kinase_II We had bad days and worse days. Some days, she was able to learn in a fairly typical manner and other days, it was like teaching someone who had suffered a brain injury like a stroke or car accident. So the most important thing I did each day was to feel out where she was at, what she was capable of that day (and I also had to realize that every day might put us at a different starting place, and sometimes she'd have different capabilities throughout the day). Re-setting my expectations on the fly was essential. Otherwise, I'd expect too much, she'd stress over disappointing me and over her own sense of loss. Much like working with someone who's in rehab for a stroke - how frustrating it is to not be able to do things you've easily done for your whole life. So forget about what she used to be able to do. Forget about what her brother can do. These are, for now, false points of reference. Start each lesson by assessing where she is at that moment and work with that. Do not show your frustration or expect more than she can give. That just blames her for something that's not in her control. You wouldn't do that to someone in rehab. You can push the way a cheerleader might - "hey, do you think you can do one more problem? No? Ok, take a break, you did a good job." But don't push with the thought that you can somehow push her back into being her old self (spoken from experience). My daughter (12) reads at a 12th grade level. But there were many times she couldn't focus on the words on the page. But she could listen. So I'd read her social studies book to her while she doodled (drawing helped her stay focused, ironically, because it's something that relaxes her and it distracted her from her anxiety). Then she'd answer questions about what I'd just read to her. Sometimes she could write the answers herself, sometimes I could see from her horrible handwriting that I'd have to scribe what she verbally told me. We just had to be flexible. We did a lot of verbal discussions. We broke lessons up into very small chunks - sometimes as little as 5 minutes. Then we'd re-group 15 minutes later, or an hour later, or a day later. I had to let go of my scheduling, my goals, and just listen to her body and support her. The old her was temporarily gone. I had to teach the person who showed up that day and just help that person do her best for that day. Not easy for a Type A mom. But it's what she needed. She is back in school this year, on a modified school day, with many absences (but for social reasons, she is adamant about being back in public). We often find ourselves having to do do school work at home to make up for missed days, and our approach is to do things in very small chunks. When she's feeling well, she takes pride in doing things independently. When she's in a bad place, I sit with her and coach her every step of the way. It's very much a teaching-as-if-you're-a-rehab-therapist approach. The amazing thing is that once the body heals, the old child comes back. You don't need to worry about her getting lazy or developing bad habits. No one wants to get back to her old self more than she does. When she heals, she will return to the independent, curious child she's been.
  42. 1 point
    Would love the same referral please for a Pans/Pandas doctor in Southern California who also is LLMD. Need a specialist in busting biofilms, Would love to find eastern or western approach at this point. Thank you!
  43. 1 point
    Did you receive a recommendation for a PANDAS doc in Orange County? I live in OC as well and have a good integrative medicine doctor that we have been using. My DS has also been diagnosed with Lyme so now I'm spreading out to an LLMD but up to now I've been happy with our integrative medicine doctor - she is very thorough and caring. Let me know if you'd like a referral and I'll private message you.
  44. 1 point
    Your child's Periodic Fever Syndrome as a toddler has me concerned there are other potential infections involved. Many of us found that although strep was an obvious trigger there were other underlying infections or viruses. Borrelia Miyamotoi is the more predominate TBI (tick born infection) in CA and is not testable via any standard Lyme test. Borrelia Miyamoti is also known to cause relapsing fevers. Here is a little blurb and you can google Borrelia Migamotoi Relapsing Fever for more references. Borrelia miyamotoi is a relapsing fever Borrelia group spirochete that is transmitted by the same hard-bodied (ixodid) tick species that transmit the agents of Lyme disease. Tick Study in CA: http://www.bayarealyme.org/about-lyme/what-causes-lyme-disease/borrelia-miyamotoi/ http://www.cdc.gov/ticks/miyamotoi.html I would highly recommend seeing an LLMD (Lyme Literate Dr.) that understands PANS/PANDAS to investigate further for your son. We have wonderful LLMDs in Northern CA that are very well versed in PANS and/or PANDAS if you are willing to travel. Please PM via the forum for referrals. Does your child have a known tick bite at any point in his life?
  45. 1 point
    Hi Everyone. I just had to sign up to this forum to let you all know that Clerodendrum inerme has dramatically helped my sons tics .It is truly a miracle plant! We live in South Africa and I sent my husband to India in 2012 to source the plant which now grows as a bush in our yard. My sons tics began at age 3 (started with eye blinking, shoulder shrugging, got worse and worse...etc.) After years of research and tears,our prayers to Allah were answered when I came across the study on Clerodendrum Inerme for tics. My son is 10 years old now. And a 'normal' little boy in every way.We dehydrate the leaves, grind them fine and put the powder into capsules . We used to liquidize the leaves with water and strain, but he could not handle the bitterness. Right from the first dose there was a major improvement. In the beginning I would give him the juice twice a week, then once a week , then once a month. He can now tolerate all kinds of foods that were once forbidden. He will have 2-3 capsules every 2-3 months or so when I notice he is stressed about something or has gone overboard on junk food. A day later and he is fine again. I promised that if the plant worked I would share this amazing information and I pray for all the children and parents that you derive benefit from it.
  46. 1 point
    This is a tough one. Separation anxiety/general anxiety, in our case, was the worst symptom for our daughter. I remember like it was yesterday not being able to go to the bathroom without her following. Her gran couldn't even get to take her out without mum or dad going. Luckily, it did eventually improve with 6 months of prophylaxis abx but was the last symptom to improve. Even now DD doesn't have the confidence of her peers. They are all having sleepovers etc., but DD isn't anywhere near this. Take small steps and try not to show how frustrated you are (hard as this is). It really does improve with time. You won't be at this crisis point for long. Improvement for us happened very gradually. One day at a birthday party I thought how great it was DD went off to dance on her own without holding my hand! Then she sat at the dinner table with her friends and didn't notice I wasn't stood behind her. Went to the toilet on her own without a second thought..... DD overall is 95% better since major episode 2 years ago She still takes prophylaxis for now and she will have minor relapses with viruses etc. But, despite separation anxiety being the one symptom we see decline first when she gets ill, it is nowhere near as debilitating. She just gets more nervous and on high alert for a week or two. No - she's not like her friends quite yet. But she did stay at a friend's for tea for a whole 2 hours last week without me - and didn't want to go home when I turned up to collect her! She was so proud of herself and because it went well for her (i.e. nothing 'bad' happened and mum did come back), she is now primed to do it again soon. She is actually looking forward to the next time. She will just be much older when she does all the independent things like sleepovers at friends. Word of warning though, I have been seeing a therapist to help me cope with PANDAS PTSD and I have discovered how much of an influence I can actually be on my daughter's anxiety. Without realising, I have been just as nervous as her (or worse?) at the thought of her being independent ('oh my god, she couldn't possibly do that.... worry, worry, worry.....people don't understand, that will set her right back'....etc. etc. etc.......) All those thoughts I have because I too am scarred from years of rollercoaster behaviour and trying to prevent disasters. We, as mums, have a duty to protect. This is our second nature and we do so many things we are not aware of. You are now programmed to condition the environment to your DD's needs. It doesn't matter she is getting so much better, fresh in your mind are those awful reminders of worse times. When will it happen again? Be mindful of the fact that we influence our children so much: I didn't know I was holding DD back until a stranger told me. I hope things improve for your family real soon. Hang on in there............
  47. 1 point
    MomWithOCDSon

    Looking for success stories

    Welcome to the forum, but sorry your family has been forced to deal with PANDAS/PANs. As you do some reading here, you'll find that our stories, including treatment protocols, can vary widely. What does seem to be a thru-line to some extent, however, are commonalities among behaviors that we see in our kids when they're sick. There's some commonality in response to various medications and supplements, too, but not always. Time frames vary dramatically, also; I have my suspicions that this variance has to do with age at diagnosis, length of time the child was suffering due to PANDAS/PANs but went incorrectly diagnosed prior to diagnosis and treatment, and similar temporal differences. My DS was diagnosed with "regular OCD" at age 6 and went through a second "flare" or exacerbation at about 7.5 years. We inquired about PANDAS with ped, therapist, and ultimately a psych as well but were told it wasn't "real," and since our DS was classically asymptomatic for strep, we couldn't demonstrate a link, either. So we treated with therapy and finally an SSRI (Lexapro) until he turned 12. At 12, he completely flipped out. Went from being fully functional, funny, social, academically gifted, to a basket case. Couldn't read, sleep, play, eat. Psych kept switching up psych meds . . . different doses, different formulas. Nothing worked, and he just got worse. "Saving Sammy" and subsequent email conversations with its author, Beth Maloney, turned our attention back to PANDAS/PANS, particularly since Sammy was classically asymptomatic also. Ultimately, we were able to prove some atypical immune response through blood tests, and our ped was, gratefully, willing to give us an abx trial. Based on Sammy's protocol and our DS's similarity to Sammy in terms of age, behavior set, etc., we began with Augmentin XR, 1,000 mg., twice daily. When I found this forum and connected with a number of other families and great minds who were deep into the latest research, helping their own families and others, too, we began to explore other supplements that could assist DS with respect to immune balance and behavior; we also found a PANDAS-literate psych and reduced his SSRI dose and changed the med, as well, to Zoloft. We looked into IVIG but did not pursue it for a number of reasons, not the least of which was DS was so positively responsive to abx, we didn't entirely see the need for another, more expensive intervention. DS was on the XR for nearly 2 years; we slowly weaned him off the last 4 months or so. He also continued on Zoloft and certain supplements we found seemed to help him on an ongoing basis: NAC, B6, zinc, quercitin, omegas and magnesium. We also kept him on probiotics (sach b. and a mixed flora) during the abx and for quite some time afterward. ERP therapy was also his constant companion, twice each week for the first year or so following his PANDAS dx, and then edging off slowly as we saw him gaining more traction over the OCD, and as we became more and more literate as parents in terms of helping him beat back the OCD at home, rather than accommodating it. He's now 17 and I consider him a success story. He can now maintain his health -- mental and physical -- even when exposed to strep. He's been off abx for nearly 3 years, though he continues on a low-dose SSRI. I've found a compounding vitamin supplier and have been able to order a custom blend multivitamin for him that contains the things we know help, and leaves out the components we've seen can have negative impacts for him. He is back to his functional self -- funny, fun, bright, in AP and honors classes in his senior year in high school, has friends, etc. He still contends with some OCD; whether or not that's because he was dealing with that for 6 years before we were successful in getting PANDAS intervention I can't say for sure, but that's what I suspect. His brain was being wired those 6 years, so undoing that will likely continue to take some time. I wish you all the best, and from our experience I will offer two key perspectives: 1) time is an important component in the healing process; and 2) don't ever give up!
  48. 1 point
    A new scale for parents to rate the severity of obsessive compulsive symptoms and 11 associated neuropsychiatric symptoms (i.e., anxiety, moodiness, sleep disturbance) is in the development phase and available for use. The current scale is based on the clinical experience of doctors Susan Swedo, Miroslav Kovacevic, Beth Latimer, and James Leckman, with the help of parents Diana Pohlman, Keith Moore, and others. Instructions to complete and score the scale are included throughout the document. ACN appreciates that Dr. James Leckman, Professor of Child Psychiatry, Psychiatry, Psychology and Pediatrics at Yale, has given us permission to share the scale here. We hope it will be helpful to parents. Click here to view and print the scale.
  49. 1 point
    dut

    vision zooming in/out

    Hi - my dd had something that may be similar... during an episode about a couple of years ago, when she went to bed she said that it looked as though I (lying on the bed with her) was miles away and she would look round the room and everything felt as though it was too far away. It would correct itself for a bit and then I and other things would be too far away again. It only happened at bedtime (which is a low point for her when things crop up that might not be evident at other times of the day). It went away after a couple of months. Both I and my sister get something which I believe to be similar but maybe not.... we get kinda proprioceptive changes of a sort. When we're tired sometimes, normally laying in bed at night, we feel as though one of our digits or sometimes a leg has grown to super enormous size. Not a bad but strange feeling, as though a thumb, say, has suddenly ballooned to 20 times it usual size. My dd's sight thingy felt as though it was along the same lines, a perception type issue rather than actual shifting in vision.... dunno... hope you work it out, good luck...
  50. 1 point
    Hi Claire, although we did food sensitivity testing when my son was young (4yo) and again after his TS diagnosis(10yo) and also specific food elimination when we were detoxing from candida(yeast), my son does NOT have any food allergies or sensitivities, other than to artificial ingredients. He showed only a slight reactivity to peanuts, but now seems to tolerate them just fine. He does however react big time to artificial sweeteners, colors, flavors, high fructose corn syrup, preservatives and MSG and so we totally avoid these.


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