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Showing content with the highest reputation since 07/19/2018 in Posts

  1. 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/
  2. 1 point
    maryangela

    IVIG at 25

    My son’s case was severe. We were in a very dark place multiple times, sometimes lasting over a year at a time. Looking back, I don’t know how we survived. What kept us going were those times of reprieve, like you experienced after your tonsillectomy...showing that there is an answer out there...but just needing to figure out how to sustain it. My son responded well to tonsillectomy, antibiotics, NAC, IVIG, but nothing with complete and lasting results. He is now receiving monthly HD IVIG at least until the end of the year. His tics have been gone for the most part for over a year. His OCD improved somewhat after 1st IVIG, but it wasn’t lasting (that is why I recommended testing for Mycoplasma Pneumonia first). His OCD is about 85-90% improved, but he still has major sensitivity to sound and odors, still has anxiety and focus issues. He just started an herbal antiviral and an herbal antibacterial. We plan on trying either the Paleo or Ketogenic diet soon. Watch the documentary “The Magic Pill” (currently on Netflix). It is amazing the impact diet has on physical and mental health. Also, Joe Rogan has a regular guest on his podcast, Chris Kresser. He promotes the Paleo diet and once used a specific example of a child with PANDAS symptoms (although he didn’t call it PANDAS) that was cured using the Paleo diet.
  3. 1 point
    Hitman3161

    IVIG at 25

    Thanks guys for your response. This is an unnerving time for me. Although, after the operation I was able to achieve complete symptomatic remission for 3-4 months and enjoyed a good period of health. I have responded positively to every treatment intervention so far. Positive response to abx, tonsillectomy etc. I understand that it may not work at my age, I have had a lot of social stress to deal with as well which has probably exacerbated the symptoms - I’ve dealt with social isolation for many years. I am going to trust my gut and go ahead with the treatment, I’ll keep you posted and updated for the benefit of others - as I’ll probably be one of the oldest to receive treatment and success would be highly reassuring for the rest of us adults. Thanks so much for your support. fingers crossed 🤞
  4. 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).
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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!
  14. 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.
  15. 1 point
    If your child has Myamotoi Borrelia it would NOT have come up positive on standard Lyme test. It has different proteins and not testable at this time. Borrelia Spirochetes can be sexually transmitted and also passed from mother to child in-utero. We have 3 children with gestational Lyme et al PANS/PANDAS/Autism. I PM'd you a list of Dr.'s. One is located in Santa Barbara for you plus some really good Dr.'s/NP's in Bay Area. 2 of the NPs listed have children with PANS/PANDAS. Look in upper right hand corner for PM message.
  16. 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?
  17. 0 points
    mountainmom

    Bartonella

    I’m hoping someone experienced with Bartonella can help me with this. My DS has continued to flare despite beginning treatment in August for Lyme, Bartonella & Babesia/PANS. Our Llmd says Bartonella treatment is particularly lengthy and believes that this is what we are continuing to deal with. Can anyone speak to how long treatment took them for Bartonella? Since the beginning of December, we’ve had two good weeks. I miss my boy. Thank you.
  18. 0 points
    Hi, I've posted before about my son, 7 who has had PANS since 4 (Lyme, Bartonella, etc.,) but was only diagnosed this August. I'm hoping if I share someone will have some insight. This board is so full of knowledgeable, kind people. My son has always flared in the winter months, usually Jan-May. In the past his symptoms were ADHD, mild tics, movement issues, mild OCD, difficulty remember things, what looked like absence seizures, severe anxiety, panic attacks, hoarding, depression, intrusive thoughts, separation anxiety and severe sleep issues. However, this summer, though he did improve in some ways (his anxiety improved), he never got back to his baseline. In August, he tested positive for Lyme & co and was diagnosed with PANS and we began treatment with antibiotics and supplements. We also took him off gluten at the urging of our Llmd after genetic test revealed he had a good chance of being Celiac. We saw immediate improvement. For the first time in years, my boy was back. It was amazing, but, short-lived. In November things were a bit bumpy and then December 1st he had a big flare that continued through most of February. However, symptoms were different then they'd been in the past. He had a lot more OCD which mostly looked like tapping his body and walls, etc. He was fairly anxious, though not as severe as in the past (no panic attacks). Our doctor took him off all medication for two weeks to see if it would help in January. It didn't help. Things got worse and so he was put on new antibiotics (Amoxcicillyn and Bactrim). They seemed to help. He had two great weeks in February and things seemed to be better. He was happy again, playing with friends, etc. Then about a week ago, panic attacks began again and now, suddenly, he won't drink anything unless I take a sip first. If I cook, he wants to watch me cook to make sure it will be "safe" for him to eat. He won't eat if he accidentally touches his food with his fingers because they might have touched his hair or the floor. He's never had any issues with contamination/eating issues before. This has all happened so quickly, and I'm so scared it is going to get worse. Two and a half weeks before this most recent flare began, he had the flu. Could that be the cause of this- or is it too long in the past to be the cause? Why would this flare be so different from past flares (he still seems mostly calm and happy)? Why is he still flaring? Shouldn't he be getting better with a diagnosis and prophylactic antibiotics? Please tell me if there is something I missing. Feeling desperate and overwhelmed. Thank you.


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