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MomWithOCDSon

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  1. Like
    MomWithOCDSon got a reaction from SuzanneR in Could I have adult PANDAs?   
    darling787 --
     
    I'm so sorry for what you're going through; I can imagine how frustrating it is.
     
    Just for the sake of perspective and empathy, I'm pretty sure I had PANDAS as a kid/teenager, but it just wasn't a discernible condition at that time. I NEVER had strep throat in the classic sense; actually, I was rarely sick at all. But my sister had strep CONSTANTLY, and I was, of course, exposed over and over again. And I was a behavioral handful, predominantly due to (I now can look back and see) being highly anxious; I was therefore always melting down, always trying to control every situation so that I would feel less anxious about it, etc. I see now that while my throat wasn't reacting to the strep or the immune response it incited, my brain was.
     
    I did not have a classic case of strep throat until I was well into my 30's and I'd had my son; he brought it home from school and even though HE, like me as a kid, did not respond in a classically symptomatic way, this time, as an adult I did. Horribly sore throat, white spots on my tonsils, incredible swelling that had me spitting my own saliva into a cup because I couldn't bare to swallow it, etc. I was shocked the first time it happened, and a little more prepared the second time. By the third time, I could see it coming a mile off. (Now, if I'd only known what all those strep exposures were doing to my DS at the time . . . but that's another story, sort of).
     
    Long story short, I would go after the antibiotics, and I would go after them hard, as hard as my body could take them. If the azith has horrid side effects for you, there are others that have been successful against strep/PANDAS to try. I have read anecdotal accounts of penicillin failing to work, but I've also read accounts of success with penicillin. But I do think that it may be less effective than some of the other abx that are second or third generations, as compared to pen.
     
    My son and I both responded very well to Augmentin XR, for instance. Is this an option for you? The extended release version puts the drug to work in your body for a longer period per dose, and the clavulanic acid component is thought to have a number of beneficial properties, both medically and mentally. You might look into it.
     
    All the best!
  2. Like
    MomWithOCDSon got a reaction from Gpookie in a message of hope   
    From our experience, maturation -- both physical (immune system) and mental/emotional -- can bring a lot of good things to the party. Especially if you have the supportive relationships and therapeutic techniques and tools in place to help along the way.
     
    Quannie, I really appreciate your "carry a cross of some kind," as it resonates deeply with me. Most families struggle with something at some point -- chronic illness, addiction, dysfunction, financial challenges, etc. I've often thought that, while my DS had a horrible couple of years that really tested all of us, I'm grateful that he remains, at his core, kind, gentle, thoughtful, bright, compassionate, loving and resilient. And all of those best qualities have "rubbed off" on the family, to some extent, making us stronger in the end. Maybe the heavier the cross, the stronger one becomes!
     
    All the best!
  3. Like
    MomWithOCDSon reacted to qannie47 in a message of hope   
    Thank you so much for sharing. It encapsulates the journey of so many on this forum. What I love best is your message that reminds us parents to embrace the better moments....and Acceptance. What has kept me most sane and hopeful is the knowledge that most people carry a cross of some kind. We are not unique. I draw strength from that.
     
    Continued Blessings,
     
    Q
  4. Like
    MomWithOCDSon reacted to Priscilla in a message of hope   
    Hello, its been a long time since I've been here..but just happened upon a quote I keep on my fridge.. Something I came across several years ago in my dark days and it really resonated with me, I've kept it... And this moment I just had, made me feel I need to share a message of hope for u. I get frustrated when desperately searching forums for anything, and u never see the outcome.. So I feel it is my duty to give u some hope.
    I was a regular here several years ago, my daughter was slipping from me, an 8 year old that seemed to be losing her mind, posesed even..we desperately tried everything... Pandas, Lyme, tourettes...years of antibiotics, 7 supplements a day, diet that was gluten, dairy, wheat, and sugar free (what the did I feed her?) Multiple ivig treatments, counseling...all of which this strong willed child protested..it was .
    Hair pulling, couldn't say certain words, no door ways , nothing passing her side, couldn't touch her, jumping spitting, grunting, violent outbursts, and all kinds of other rules her mind made that I could never even know..
    So here we are..14 and a half years now.. I would love to say it miraculously got easier...but it hasn't ..as a matter of fact..this strong willed teen got worse,
    Bigger, stronger, and raging hormones with no period at 14 years old.. By last Jan we did what I have avoided since 7 years old..she was hospitalized for 5 days..it was necessary.. Violent and physical altercations ( with her now bigger than me!) And put on partial outpatient program for 3 weeks Instead of school.. I was fortunate to have a wonderful program available for this.. And am not recommending hospitalization because as a nurse with some mental health experience ..it often does more harm then good...u need to find your path...
    I'm not sure what she learned from it..as she is..as always very resistant to discussing these issues..but she did get a bit better.. And opened up a little.. And I learned how damaging my good intentions to constantly seek help for her have been...she has always seen me as trying to "fix" her..a brief conversation about this.. And me telling her I know she can't help it..and doesn't want it..but letting it go has been huge... Is it easy? Absolutely not, are there still issues? Yup..but by June if this year..period came..I we afraid..will it get better or worse? I have to say..better..things seemed to be balancing.. School was horrible last year..(8th grade) the worst yet...but we just started high school ..she loves it..grades ate great..and Ocd and tics definitely milder..but still there...is it me backing off? Puberty finally giving relief? I don't know.. But I am confident she WILL be OKAY.. Different..but ok..I just wanted to give those of you who are where we were just a few years ago hope😀😀
  5. Like
    MomWithOCDSon got a reaction from BeeRae22 in Anxiety/psych meds   
    I certainly agree with caution, but not unlike kakrpa, I feel certain that the RIGHT psych meds, in the RIGHT dosages were key to my DS's recovery, along with the abx, supplements and therapeutic interventions he partook in, as well.
     
    I will say, anecdotally from reading this forum for many years, as combined with personal experience not only with my DS but another non-PANDAs family member, that I would be particularly wary of the sort of anti-psychotics that some docs are prescribing our kids (risperadal, abilify, zyprexa, etc.) as they seem to increase -- rather than help diminish -- anxiety and the behaviors that are borne of that anxiety. I think perhaps the docs sometimes reach for these because they are typically quicker-acting than general first-line anxiety meds like SSRIs, and by the time families agree to taking this step, they're generally after some quick relief. And particularly when a child is described as "raging" or "aggressive," they may turn to these heavier hammer anti-psychotics because they have a tranquilizing quality to them, as well. But similar to KLW's experience, we had nothing but bad results from this class of drugs.
     
    On the other hand, Zoloft (SSRI) did nothing but positive things for my DS, and my other family member, who's anxiety was controlled well for several years via Prozac before it ceased to be effective any longer, is now experiencing success with Pristique (SRNI). With my DS, we also found that lamictal was helpful in that it made him a bit less emotionally explosive and gave him more objectivity in those moments of high anxiety, i.e., he was able to examine his situation without getting so overwrought about it that he'd melt down instead of problem-solve.
     
    Of course, the tough thing about SSRIs is that they typically take up to 4 to 6 weeks to come to full effectiveness, and because our kids tend to be especially sensitive, we start with very low doses to begin with. All of that can drag out the positive impact time line, unfortunately. But my DS showed some improvement in mood and lighter anxiety within about 3 days of having started Zoloft, so I know it can, at least sometimes, have an impact sooner than is typically noted.
     
    Hang in there, and all the best. Try not to look at it as a "surrender." Quality of life matters, so doing what you can to help improve that for all of you is, IMHO, a worthy step.
  6. Like
    MomWithOCDSon got a reaction from ibcdbwc in Anxiety/psych meds   
    Re. GeneSight . . .
     
    There's another one of these genetic tests called GenoMind which is focused upon neurotransmitters and other brain-oriented genetic activity. It has to be ordered by a doctor, and the cost is generally not covered by insurance. We had several conversations with the folks at GenoMind as to our costs/liability, and the bottom line they told us was $300, although it is a $5,000 test. Supposedly, they are very aggressive with the insurance companies and handle all of that haggling on their end, but if all else fails, the most they'll bill the patient back for is $300. Unfortunately, we couldn't get them to put that in writing (said they can't do that because it might be construed as "advertising"), and our DS was doing well on his current regimen, so we didn't do it in the end.
     
    That said, I love the idea of testing for this purpose, and I'm glad to hear about another option to GenoMind as I think competition will go some way toward keeping the costs down.
     
    Good luck!
  7. Like
    MomWithOCDSon reacted to ibcdbwc in Anxiety/psych meds   
    There is a test called Gene sight that you might look into. I honestly don't know much about it as I haven't done the research. But i was willing to buy into the idea to eliminate some of the trial and error mess.
     
    We were prescribed zoloft at age 8. It was horrible. Sent him into a frenzy and we took him off after a week. This was pre-pandas diagnosis of course and we didn't start the dose "obscenely low." The pill also has dye - which we later found out causes hyperactivity in my son. So it could have been other things that caused his negative reaction.
     
    Fast forward to age 12 when we tried Prozac. It had almost an immediate calming effect which was wonderful. However, he became oppositional and somewhat suicidal within a few weeks. We were at very low doses -- but he also had just had a fever and some terrible stomach virus at the same time. Again - may have been other things that caused the negative reaction. But...
     
    We recently did GeneSight which confirmed that we should stay away from several of the SSRI meds due to a gene that has trouble with serotonin transport. However a few of the newer SSRIs and some of the SRNI's should be okay for him. We have not tried that class again yet, but we are on low dose lamictal. I am not sure it is helping but it is also not hurting. The Gene Sight test can at least help you narrow down the choices.
     
    I am not against psych meds at all IF you can find the right one to offer relief. I think they've helped a great number of people.
  8. Like
    MomWithOCDSon reacted to demeter in PANDAS/PANS with no current infections or is it TS ?   
    We too hit a "no" improvement time with my son. He was being treated by Dr B and Dr M in Connecticut for Pans. We were addressing many infections as well as monthly IVIG. After a year with no real improvement we took our son to Roger's for the partial hospitalization program. This was our idea not suggested by his current treating doctors. I think sometimes with Pans it is either medical or pysch path. In reality it does not need to be mutually exclusive. Anyhow, for our son Roger's was amazing. I believe he needed all the medical issues to be addressed and then for some reason he was stuck with residual stuff that Roger's addressed. My son was debilitated by OCD, anxiety, intrusive thoughts, however, never had tics. We stopped all prescription meds which was combo antibiotics, and HD IVIG before we checked in last November. He was finished with the program mid January this year and he has been 100% ever since! He still takes zero medication. He does talk to his OCD therapist every 1-2 months for maintence. Anyhow, just another idea. Best to you and your son and I hope for healing soon. Please feel free to contact me if you want any further information!
  9. Like
    MomWithOCDSon got a reaction from ibcdbwc in OCD or Anxiety?   
    If you are truly "obsessively" worrying, I would tend to categorize that as OCD, given the "obsessive" part of it. Not to mention, obsessive thinking seems to be a very common manifestation of OCD, particularly for older, adult sufferers as your intellect provides more vulnerable fodder for the OCD beast to exploit.
     
    That being said, and OCD manifestation or behavior doesn't rule out PANDAS/PANS. Personally, I'm of the opinion that, 20 years from now, there will be little, if any, distinction between "regular OCD" and PANDAS/PANS or OCD behaviors born of immune dysfunction or other biochemical processes. In other words, I think all the existing "regular OCD" diagnoses that have been handed out willy-nilly over the last couple of decades are probably mis-diagnoses. Or at least a failure on the part of the "experts" to dig into the root cause of the disorder, rather than just label it, medicate it and move on. Such was my son's story.
     
    Given your history with strep, I would definitely suspect a bacterial/immune genesis of your disorder. I would pursue all medical avenues, while also availing yourself of the therapeutic resources (CBT/ERP) available to you to help keep the OCD compulsions and obsessions in check as you search for and deal with the medical root of your current concerns.
     
    Good luck!
  10. Like
    MomWithOCDSon got a reaction from momslove in narcoplepsy   
    Found it!
     
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2786037/
  11. Like
    MomWithOCDSon reacted to jan251 in Treating OCD with Minocyline   
    Another study on minocycline and OCD:
     
    Minocycline combination therapy with fluvoxamine in moderate to severe obsessive-compulsive disorder: A placebo-controlled, double-blind, randomized trial.
    I wonder what happens after the mino is withdrawn? More mino studies: Minocycline attenuates interferon-α-induced impairments in rat fear extinction. Autism phenotypes in ZnT3 null mice: Involvement of zinc dyshomeostasis, MMP-9 activation and BDNF upregulation. On the other hand: Microglia Activation and Schizophrenia: Lessons From the Effects of Minocycline on Postnatal Neurogenesis, Neuronal Survival and Synaptic Pruning. And orthodontics can induce glial activation? who knew? Effect of minocycline on induced glial activation by experimental tooth movement.  
    (Interestingly, it appears Dr. Swedo also did a study: A pilot open-label trial of minocycline in patients with autism and regressive features, where there were changes in CSF but not in symptoms)
     
    There is a minocycline study underway, Novel Medication Strategies Targeting Brain Mechanisms in Pediatric OCD, though no results have been posted. This trial requires current SSRIs with minimal but insufficient improvement. PANDAS patients are excluded.
  12. Like
    MomWithOCDSon reacted to Rachel in Recovering   
    Just wanted to pop in and give everyone an update on my son. He was diagnosed with Postural Orthostatic Tachycardia Syndrome in October 2011. He was tested for Lyme and Co-Infections but never got a positive test on any bands. He tested positive for Basal Ganglia Antibodies in November 2013 but was never diagnosed with PANS/PANDAS because he did not meet the NIH criteria. However, my son did get treated for these antibodies by his cardiologist because they were making his POTS symptoms worse. He was treated first with antibiotics, then a few months of IVIG, and then had to go on a do Plasma Exchange. His Plasma Exchange treatments lasted for a year. He had his last treatment in July 2015.
     
    In June 2015 before treatment stopped totally, my son's tremors from waist down disappeared. He could finally ride a recumbent stationary bike and started doing floor exercises to build up core muscles that he had lost from not being able to exercise. The Basal Ganglia Antibodies interfere with cell signaling which in return will interfere with any signaling in the brain.
     
    In July 2015, he still had his daily headache and severe scalp pain. His doctor prescribed extended release Namenda in April 2015 and it dropped the headache down to 6 out of 10 instead of an 8. His doctor also prescribed Low dose Naltrexone 3mg the end of July 2015. This medication is used to treat CRPS, chronic pain and other autoimmune related illnesses. Eight weeks later, my son's headache, severe scalp pain, and hypersensitive skin pain issues are gone. My son has been pain-free since October 2015.
     
    In November 2015, my son was finally able to stand up and take his first steps with a walker. A week later, he tossed the walker aside. My son saw his doctor later in November and he sent in the orders for physical therapy. His doctor also allowed him to start going to one church service a week to start exposing his immune system and to do short errands in uncrowded stores. So we started making short runs to the Post office, Braums for milk and ice cream, It tired him out at first, but he does enjoy getting out.
     
    Physical therapy was started in January 2016 and in March my son was doing pool therapy for 60 minutes. His pt taught him to swim and he now goes to an indoor pool to swim or do pool therapy exercises. He currently exercises 3 times a week, goes to all three church services, runs errands, and continues to do online school at home. His core muscles are still weak and he cannot sit up comfortably for more than an hour. He is able to walk for about 15 minutes before back pain sets in. He is being reevaluated for this soon.
     
    My son's POTS symptoms are more manageable. His blood pressures stay up, brain fog is gone, and hoarse voice is gone. Vocal tics are hardly every heard. My son is still on several medications but overall, he is on his road to recovery.
  13. Like
    MomWithOCDSon reacted to Gpookie in Advice about neurologist appointment   
    The best advice I can give is what I think tends to work in most situations for doctor? I hope you can take the advice in the spirit it is given, which is to make sure your kids can get the most attention and best possible care! Prepare a half or one page summary for the doc., make sure it includes ONE specific request or question for him/her. And then put everything else in a file and be prepared to answer questions.
     
    I would say first, figure out (realistically) what you want out of the appointment: do you want simply the doctors commitment to seriously turn every stone to figure out what was going on? Do simply want a neurologists input of some of the neurological things you have been seeing? Are you going in determined to get a PANDAS diagnosis? Do you want to convince the doc of something or do you want him/her to be curious about your situation, ask questions and figure out what is going on? In our case, we had a specific (but open-minded and realistic) goal for each doctors appointment. We were also willing to accept that there was something else going on than what we suspected.
     
    In my experience, it's best to get rid of as much emotion about the situation as possible before going in. Drs cannot really do anything with the parents emotion and it might cloud the picture you are trying to build (I recognize that for PANDAS parents, this is a phenomenal task!!!). I always try to look at it from the Dr.s perspective What does he need to know to evaluate my child for whats going on rather than tyring to give every detail of what we experience at home and how it imlacts us.
     
    Present as many facts as possible and try to focus on the clear indisputable facts. Try not to press a diagnosis in a certain direction, but present clear, solid facts that paint a picture of what is going on. Even the best doctors seem to get skeptical if the parents walk in with a diagnosis. Instead, try to link any causal relationships in a factual way if there are any. Example: I would recommend not going in looking for a PANDAS diagnosis or other, but you CAN say (if true): I notice that if my child or someone in our house gets sick, XYZ happens. This has happened in January, April and August and each time, the episode lasted ABC. 123 made it worse and 456 made it better. We also notice (in our family), every time my child failed a math test or got sent to the principals office for behaviors, 2 or 3 kids called in sick the next day. Things like that. I find that many doctors treat PANDAS but shut down with the use of such terminology (i.e. Johns Hopkins)
     
    Try not to dump a zillion details on the doctor, but group symptoms and give them a name. With my son, we said things like: He began to restrict his eating, could not sleep at night and found it very difficult to stop moving, even in his sleep. We did not go into: he tapped his foot 10 times in an hour, he tossed 23 times in bed and rolled his eyes and ate his bread but not his eggs and he would cry when the door open and he couldnt sit in the car without crying. We would say: he lost his fine motor skills overnight, rather than give a laundry list of things (unless the doctor asked). Make the doctor curious and let them ask questions.
     
    Doctors have it rough, too, and need to weigh the information you give them, so make sure that you dont lose them in detail or put them in a binary situation (i.e. you think its PANDAS, he doesnt, there is an argument and your child never gets evaluated). Think of the doctors as a potential partner, though not all will be in the end. the trick is knowing when to end the conversation an walk away. Having a sick child is so difficult, we figured that our energy would NOT be well spent on convincing doctors, but on getting help. Now that are kids are well, we have energy to spend on the convincing...But be firm and convincing!!!
     
    I know its tough, and I hope some of it helps. Good luck and I hope that your children get the help, attention and care they need.
     
     
  14. Like
    MomWithOCDSon reacted to jan251 in PANS after autism?   
    The sudden onset and the urinary issues would be relatively specific to PANS, if I recall correctly. However, personally, I don't like the boxes we have in medicine. Looking at the big picture, it is obvious that the infection had something to do with the symptoms you saw. The connection is probably the immune system, i.e. inflammation, probably of a specific type. Immune and nervous systems are connected.
     
    Especially considering the history of lyme, I'd wonder about the status of the immune system in general (blood tests) and whether the viral and lyme infections (and lyme co-infections) are still lingering (more blood tests). Whether to take a more immune system approach or an approach that focuses on the infections is impossible to say - there seems to be some disagreement on that among PANS/PANDAS docs - maybe both is the answer. The onion has several layers and there is no one route to wellness. I'd probably start with a PANS/PANDAS doc though many are not as experienced with lyme - it just depends. Maybe set up appointments with both a PANS/PANDAS doc and a lyme doc.
  15. Like
    MomWithOCDSon got a reaction from SSS in Can a Pandas or Pans episode cause permanent regression?   
    I have to join Jan251 in echoing an "I don't know" with respect to some of your questions, but I can also offer this. In the depth of my son's worst/pivotal PANDAS exacerbation, many of his behaviors, sensitivities, etc. looked very, very much like an increasingly severe type of autism.
     
    Perhaps like your kiddo, he had previously (along about the age of 3) displayed some "processing differences" that a few doctors and caregivers likened to a functional level of Asperger's, but nothing like what the PANDAS "unearthed," is the best way I can describe it. As a preschooler and through grammar school, he had some of the Asperger traits: intense focus on things of his interest, lack of tolerance for things/subjects that didn't interest him at all, general disinterest in social interactions with peers but an exceptionally strong ability to articulate thoughts, ideas and even feelings with trusted adults, high physical sensitivity to clothing labels, sock seams, etc.
     
    With the PANDAS came an inability to look people in the eye when talking with them, a "kinetic" sort of need to move and talk at the same time -- if you asked him to sit or stand still, the words wouldn't come out, odd speech patterns in which he would repeat words or even full phrases over and over again, without being able to complete an articulate thought, lack of muscle tone to the extent that he couldn't sit up for long periods, was forever lounging and slumping, dramatic meltdowns over tasks or requests that, before, had been simply and confidently accomplished. My dad developed Alzheimer's about the same time, and at one point fairly well into his healing, my son told me that sometimes he "felt like Grandpa" because while he could remember a beloved vacation that we took two years ago, he couldn't remember what he'd had for breakfast that morning, or even if he'd brushed his teeth less than half an hour ago.
     
    Personally, I think ALL of this is brain assault . . . microbes, inflammation, neurotransmitters tilted off-balance by inflammation or microbes or both . . . But it DID all get better over time with PANDAS treatment, therapy, supplementation and some "psych" meds, as well.
     
    Within about 2 years' time, all of his caregivers/doctors had dropped any reference to "autism" in his diagnostic profiles, and he's a happy, successful, largely independent college sophomore today. That's not to say that he doesn't still have some "quirks" or some periodic episodes of anxiety and/or OCD, because he does. I think he's wired this way, honestly. But he is fully functional which, during the PANDAS, he couldn't have been further away from.
     
    All that's to say . . . don't give up! The answers don't come easily, nor do they always come quickly, but they WILL come!
  16. Like
    MomWithOCDSon reacted to jan251 in Can a Pandas or Pans episode cause permanent regression?   
    So the OCD and tics left with antibiotics, but loss of language, loss of motor skills, and anxiety remain. If it were me, I'd still be blaming PANS/PANDAS here and assuming this is not permanent, but treatment may not be straightforward or quick.
     
    We've been working on this for two years now. Funny thing is that before PANDAS, my child had developmental delays, low levels of sensory stuff going on, speech and language issues, etc., but it wasn't until PANDAS that there were relatively short moments of overwhelming anxiety where he really "looked" autistic, even to the professional we saw for CBT. In those moments, it's downright disturbing for me to try to look at him as an unfamiliar observer rather than the mom who knows exactly where he's at underneath the compulsions or whatever. For us, there are layers to the puzzle, and antibiotics provided very little in the way of symptom relief. We're working on IVIg and if we get improvement, at some point hopefully we'll be in a place where trial and error with methylation, etc. will help us do the fine-tuning I expect will be necessary.
     
    Good luck with the PANDAS doc. I know the waiting is hard.
  17. Like
    MomWithOCDSon got a reaction from jan251 in Can a Pandas or Pans episode cause permanent regression?   
    I have to join Jan251 in echoing an "I don't know" with respect to some of your questions, but I can also offer this. In the depth of my son's worst/pivotal PANDAS exacerbation, many of his behaviors, sensitivities, etc. looked very, very much like an increasingly severe type of autism.
     
    Perhaps like your kiddo, he had previously (along about the age of 3) displayed some "processing differences" that a few doctors and caregivers likened to a functional level of Asperger's, but nothing like what the PANDAS "unearthed," is the best way I can describe it. As a preschooler and through grammar school, he had some of the Asperger traits: intense focus on things of his interest, lack of tolerance for things/subjects that didn't interest him at all, general disinterest in social interactions with peers but an exceptionally strong ability to articulate thoughts, ideas and even feelings with trusted adults, high physical sensitivity to clothing labels, sock seams, etc.
     
    With the PANDAS came an inability to look people in the eye when talking with them, a "kinetic" sort of need to move and talk at the same time -- if you asked him to sit or stand still, the words wouldn't come out, odd speech patterns in which he would repeat words or even full phrases over and over again, without being able to complete an articulate thought, lack of muscle tone to the extent that he couldn't sit up for long periods, was forever lounging and slumping, dramatic meltdowns over tasks or requests that, before, had been simply and confidently accomplished. My dad developed Alzheimer's about the same time, and at one point fairly well into his healing, my son told me that sometimes he "felt like Grandpa" because while he could remember a beloved vacation that we took two years ago, he couldn't remember what he'd had for breakfast that morning, or even if he'd brushed his teeth less than half an hour ago.
     
    Personally, I think ALL of this is brain assault . . . microbes, inflammation, neurotransmitters tilted off-balance by inflammation or microbes or both . . . But it DID all get better over time with PANDAS treatment, therapy, supplementation and some "psych" meds, as well.
     
    Within about 2 years' time, all of his caregivers/doctors had dropped any reference to "autism" in his diagnostic profiles, and he's a happy, successful, largely independent college sophomore today. That's not to say that he doesn't still have some "quirks" or some periodic episodes of anxiety and/or OCD, because he does. I think he's wired this way, honestly. But he is fully functional which, during the PANDAS, he couldn't have been further away from.
     
    All that's to say . . . don't give up! The answers don't come easily, nor do they always come quickly, but they WILL come!
  18. Like
    MomWithOCDSon reacted to mama4 in Klonopin or prednisone? intense anxiety before tomorrow's school start?   
    We went through this exact same thing a few years ago. I know how stressful this can be!!
     
    What ultimately helped us was Lexapro (I know a lot of Pandas/Pans kids are not helped by this, but it was miraculous for us.) Sounds like he could use a CBT therapist (exposure therapy). It involves exposing oneself to the scary situation in manageable steps. Panic can come from feeling trapped. Ask the school to provide a safe room, like the nurse's office if he needs to regroup. I haven't had any experience with prednisone, but we use Advil and it helps somewhat.
     
    You want him to feel the success of being able to go to school (even for an hour-even for a few minutes!). Praise him for the small steps. Then try for more the next day or every few days-the key is small steps. I am not a therapist, but this is what helped us. Get some professional help if you can. If you can't, look online for CBT/exposure therapy. Even though the root cause is not psychological, the CBT can help. I am sending you good thoughts. Let us know how it goes.
  19. Like
    MomWithOCDSon reacted to ibcdbwc in Klonopin or prednisone? intense anxiety before tomorrow's school start?   
    I don't know how to help you or your son. But wanted to say my thoughts are with you as you navigate this horrendous journey. Surely there is a lesson for us all somewhere on this path. I'm still looking and learning after all these years.
     
    I just cant imagine how difficult it must be for a teenager (my son is 15) to face these misunderstood debilitating symptoms. As if being a teenager were not difficult enough.
     
    Good luck to your son tomorrow. That first step is indeed a giant leap!
  20. Like
    MomWithOCDSon reacted to Plum99 in I am so thankful   
    I am so thankful for all the posts that not only give details of symptoms, links to studies, ways to treat, and especially the personal stories that let me find connection and hope.
    I am so thankful for the people who have sent me private messages, even though I have harassed them endlessly with my own meltdowns and questions. And for the people who respond to my posts too. None of you get paid to listen to me or brainstorm, but doctors do. Thank god there are people who just care.
    I am so thankful for the Internet. I realize that if I were going through this 20 years ago, i would have nothing.
    I am thankful that I can see, from my position right now, all of you who have made it at least partially over to the other side, and you're so composed, and knowledgeable. It gives me hope that my own insanity, possible PTSD, and anger that has come out of this whole situation might possibly pass, and maybe I'll be a normal human again someday.
    I am thankful for every time I read something about not accepting diagnosis, or answers, or labels, when I can see what is going on with my child. It makes me feel more and more confident each time I go through weeks of being told nothing is wrong, or nothing that is treatable anyway, that I'm going to eventually get another call telling me that actually there is still an infection. And even though no one wants to acknowledge it, we all know that this is just another time, probably the hundredth by now, that it really means that I should have been listened to, I wasn't wrong, I wasn't making things up, I wasn't spending too much time googling, and if I would have been listened to right away, this didn't have to keep spiraling. I know the message is known, even if it is disguised by criticisms and suggestions that are not relevant.
  21. Like
    MomWithOCDSon reacted to NancyD in Autoimmune Breakthrough - British Study   
    LDI is still relatively new - only about 3 years. Low-Dose Allergy (LDA) Immunotherapy has been around for many years. I don't know of any PANDAS/PANS only doctors doing LDI. There are many integrative doctors who treat PANDAS/PANS children who are doing LDI. Quite a few PANDAS/PANS children are having great success with a combination of LDI strep and LDI Lyme once they hit their core dose. Treatment (either subcutaneous injection or sublingual drops) are every 7 weeks and the cost is very minimal - ~$25-$50/dose depending upon the doctor. Insurance does not cover. The trick is to start at a very diluted dose and go slow. If you have no reaction at all in about 7-14 days you can go to a lower number (less diluted dose) until you find your core dose. If the dose is not diluted enough and you flare you must wait 7 weeks for your immune system to reset itself and administer at a more diluted dose. Once you reach your core dose you administer every 7 weeks but you can give a booster (1/2 dose more diluted) in between doses. You can also administer other LDI or LDA antigens in between. There is also LDI autologous where they take your sinus drainings or stool or urine samples and mix very tiny miniscule amount with beta glucuronidase to create your own personalized antigen. We don't know how long you have to take this since it's only been around for a few years but theoretically you should be able to wean off this slowly once your immune system is balanced - perhaps do a treatment annually. Many people are having great success with LDI.
  22. Like
    MomWithOCDSon reacted to Gpookie in Autoimmune Breakthrough - British Study   
    Yes, nancyd is correct. My kids get IVIG and LDI...
  23. Like
    MomWithOCDSon reacted to NancyD in Autoimmune Breakthrough - British Study   
    No, not donor antibodies. LDI is a form of immune desensitization that combines an enzyme called beta glucuronidase with minuscule amounts of antigens relevant to your medical condition. The enzyme makes T-cells pay attention to the antigen, down-regulating the immune response to that allergen. The Lyme mix contains over 70 strains of pathogens - dead antigens mixed together with sterile water and combined with beta-glucuronidase prior to administration. They are in highly diluted concentrations - different concentrations are given depending on the sensitivity of the patient. A dilution of 6C would be a 1,000,000,000,000 dilution of the antigen. The higher the number, the more diluted the concentration.
     
    LDI is also used for strep, yeast, mold, mycoplasma, foods, chemicals, and environmental allergens.
  24. Like
    MomWithOCDSon got a reaction from mama4 in Autoimmune Breakthrough - British Study   
    This just came across my FB feed today, and I thought it was interesting:
     
    http://medicures.org/british-researchers-may-have-just-found-the-cure-for-multiple-sclerosis/
     
    By synthesizing proteins from the sheaths in a lab and then injecting them into the blood stream at increasing doses, the body begins to learn that they are safe and no longer attacks them.
     
    This type of therapy has already been used in treating some allergies, a treatment that is called allgergic desensitisation, but its only recently that scientists have thought it had potential to be used elsewhere.
     
    In autoimmune diseases the immune systems sees little protein fragments in your own tissue as foreign invaders and starts attacking them. What we have found is that by synthesizing those proteins in a soluble form we can desensitize the immune system by giving an escalating dose.
     
    These findings have important implications for the many patients suffering from autoimmune conditions that are currently difficult to treat, he added.
     
    Another option for PANDAs treatment in the offing, perhaps?
  25. Like
    MomWithOCDSon got a reaction from tj21 in Teen:incapacitating tics and issues   
    Wow! So sorry to hear what you're going through!
     
    Please forgive my ignorance, but this dramatic "seizure tic" that you describe . . . have you pursued a second opinion as to whether it's actually a seizure versus a tic? This seems to be a very complex tic, if that is "all" it is, and if it is so uncontrollable that it occurs when she's asleep, swimming, etc. and endangers her physically (concussions, etc.), to an untrained layperson like myself, it sounds more like an actual seizure than a tic. I know kids that have seizure disorder diagnoses, and their seizures have a lot of similarity with this one of your daughters. On the flip side, though I don't have a whole lot of experience with TS itself, I've been here on the PANDAS/PANs forum for several years now, and I've never seen a "tic" described in a similar manner as what you're describing.
     
    Has your daughter ever been prescribed an anti-seizure medication such as trileptal or lamictal, even if only on a trial basis? Some of us with PANDAS kids have been given prescriptions for lamictal "off-label" because our kids weren't technically diagnosed with a seizure disorder but because it is beneficial on other fronts (modulates brain glutamate, an excess of which can contribute to behavioral disturbances, including OCD).
     
    In short, given as your daughter's troubles began on the heels of a discernible medical illness, I think it is highly possible PANDAS/PANs is at issue here. Did the pediatrician that your daughter saw -- though dismissive -- order any blood work at all? Have you had immune panels done, or the Cunningham panel? If your regular pediatrician is of no help in this regard, will your psychiatrist order the blood work on your behalf? When you say she was "negative for strep," do you mean by throat swab? My son was ALWAYS negative for strep by throat swab; it wasn't until we had his strep titers tested that we realized he DID have strep -- he was just classically asymptomatic to it. That being said, it doesn't have to be strep that sets off this condition, either; it could be myco p, lyme, Epstein barr, any number of other microbes that set off an immune response/antibodies that get past the blood brain barrier (BBB) and wreak havoc in the brain.
     
    I would follow your instincts and continue to pursue some real answers that might, in the end, provide your daughter some relief. If you haven't already, you might drop a similar post regarding this tic over on the TS board here, too, and see if anyone who participates there can share some similar experiences and/or successful interventions with you.
     
    All the best.

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