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Albymom

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  1. Like
    Albymom got a reaction from wisdom_seeker in I want to know the "why's".....   
    A highly reactive immune system can have many causes. I have given up searching the internet trying to piece all the clues together. Our PANS expert doctor explained that once triggered, auto-immune and/or auto-inflammatory diseases can take up to five years to fully heal. Our daughter sounds very similar to your child. She has always tested negative for everything but she is classic PANS with onset 1 year ago. They eventually deduced a valid hypothesis for a cause (a rare autoimmune disorder), but her specific situation is still fuzzy and anyway it's not really important in terms of the point I want to make.
     
    Our daughter responded very well to abx at first (even though she had no active infections), then she slipped. They moved her to HD IVIG (she's had 5 since Halloween), and to steroids (both oral Prednisone and IV-infused Solumedrol). Each treatment would return her to normal for a few beautiful weeks - sometimes as many as five in a row -- before a cold sore or a loose tooth or a stupid common virus would sink her again.
     
    Because her relapse and remission pattern was so clear, and because it was clear she is triggered by almost any insult to her immune system, our doctors moved us to the next level treatment in January. We are now doing Rituximab infusions and Cellcept to tamp her super-reactive immune system.
     
    My understanding is that these two treatments have, in the past, typically been reserved for "severe" auto immune / auto-inflammatory PANS cases, but our daughter is quite functional and she is now more behaviorally "normal" than not. When she is in remission, she can reach between 90 - 100% baseline "normal". She attends school daily (unless she gets a virus, a loose tooth, or another type of immune system insult), and when she's well she does quite well both socially and academically. It's amazing to us that she's having such a great year school-wise, despite having missed 30 days due to PANS. If you met her or taught her in your classroom, you might not even notice she was different. Yesterday, one of her teachers emailed us to say it is "truly amazing to see the difference" in our daughter between days she's not feeling well, and days when she is 100%.
     
    I've heard that some clinics are moving to Ritux and Cellcept treatment sooner than they would have in the past for kids with continued, highly reactive immune system responses. I encourage you to look into the next level of treatment for your child. Is it terrifying to consider a form of chemotherapy (Ritux) along with an anti-organ rejection drug (Cellcept) for your child? Absolutely. While is was not a decision we made lightly, in some ways wasn't really a decision at all. When the choice is to continue this push-and-pull heartbreak of remission and relapse, when you live in constant fight or flight mode just waiting for PANS to kidnap your kid at any minute, stealing more days from her beautiful life, and when your child has reached steroid toxicity levels and nothing else seems to "holding" her at well for more than a few weeks at a time, then moving to the next level isn't really a choice.
     
    Our daughter's risk for infection is higher because she is now taking these drugs, however, as our doctor put it: "If she gets an infection, we admit her and treat the infection and she goes home. The number one, most critical priority is protecting her healthy brain." The goal is to suppress the auto-inflammatory cycle long enough to give the brain time to heal. This can take up to five years. Many kids are on this protocol for many non-PANS-related conditions and they live very normal lives.
     
    Good luck.
  2. Like
    Albymom reacted to bws1565 in Am I imagining things?   
    Albymom,
     
    My dd16 hasn't gotten a fever ever since I remember too. In addition she had a borderline low white count. I was told this is a sign of a STRONG IMMUNE SYSTEM! until we hit upon Lyme. Of course this is a classic sign, meaning that the body has given up fighting and all viruses and bacteria just sit there.(and cause trouble).
  3. Like
    Albymom got a reaction from sf_mom in Am I imagining things?   
    You've received excellent advice from everyone on this thread.
     
    I want to emphasize a point that has already been made; these behavioral symptoms deserve to be treated as seriously as more traditional "bio-tyipcal" symptoms. They are the neurological equivalent of having a high fever, or a migraine or a broken bone, or even coughing up blood. Something has crossed the blood-brain barrier in your daughter's system, and her system is misguidedly attacking her brain. If that sounds dramatic, it's because it's really that serious.
     
    Because of how we've been conditioned to think about "medical symptoms", it was initially hard for me to truly grasp that our daughter's behaviors were 100% out of her control, and furthermore that her behaviors were actually expressions of alternate systemic responses to inflammatory agents. For example, the fact that she hasn't had a fever in over four years is actually a serious symptom. It's neither a "fun fact", nor an indicator of a strong immune system.
     
    Early, aggressive intervention can stop the auto-inflammatory process before it becomes a continuously reinforcing cycle. The longer this pattern is reinforced, the harder (and more expensive) it is to get the inflammation under control. Combatting the inflammation is necessary in order to retrain the immune system.
     
    Discerning the initial cause may never happen. I spent months exhausting Google and wracking my brain in search of "the cause". I've come to accept that in our case, while we have evidence of brain inflammation, despite the 75+ blood tests results, our daughter's initial (and continued?) 'cause' remains yet undiscovered. We now focus on what we DO know, and what we CAN do, which is to combat the inflammation and retrain the immune system.
     
    Having lived with PANS for (only?) 13 months, my main regret is that I didn't initially adopt and convey the same sense of urgent and criticality that any parent might have if their child had suffered a stroke, or a crazy-high fever, or if their child had a more "classic" presentation of Rheumatic or Scarlet Fever. We've been conditioned by our current medical and social construct to treat behavioral symptoms differently from "purely biological" symptoms presentations. We label and treat "mental health" as an entity somehow separate from "health". Although the brain is an organ just like your kidneys, lungs, and the liver, for some reason our culture separates neurological issues into two parts: biological issues and the rest -- "mental health". It was months before I truly grasped how serious this disease can become if flares are not treated immediately and with as much medical firepower as you are comfortable employing. PANS inflammation left to smolder and re-trigger can quickly become your worst nightmare.
     
    I hope you are able to quickly and easily identify an active infection or other clear cause, and that the right antibiotics will eradicate your challenge altogether. I don't know of any statistics citing how many children fully recover at each of the various PANS treatment stages, but the sooner you get comfortable ringing alarm bells and pushing hard for serious treatment quickly, the shorter your trip down the rabbit hole to PANS Land will be.
     
    I'm sorry you're here, but you're not alone. Best of luck to you and your family.
  4. Like
    Albymom got a reaction from dcmom in Am I imagining things?   
    You've received excellent advice from everyone on this thread.
     
    I want to emphasize a point that has already been made; these behavioral symptoms deserve to be treated as seriously as more traditional "bio-tyipcal" symptoms. They are the neurological equivalent of having a high fever, or a migraine or a broken bone, or even coughing up blood. Something has crossed the blood-brain barrier in your daughter's system, and her system is misguidedly attacking her brain. If that sounds dramatic, it's because it's really that serious.
     
    Because of how we've been conditioned to think about "medical symptoms", it was initially hard for me to truly grasp that our daughter's behaviors were 100% out of her control, and furthermore that her behaviors were actually expressions of alternate systemic responses to inflammatory agents. For example, the fact that she hasn't had a fever in over four years is actually a serious symptom. It's neither a "fun fact", nor an indicator of a strong immune system.
     
    Early, aggressive intervention can stop the auto-inflammatory process before it becomes a continuously reinforcing cycle. The longer this pattern is reinforced, the harder (and more expensive) it is to get the inflammation under control. Combatting the inflammation is necessary in order to retrain the immune system.
     
    Discerning the initial cause may never happen. I spent months exhausting Google and wracking my brain in search of "the cause". I've come to accept that in our case, while we have evidence of brain inflammation, despite the 75+ blood tests results, our daughter's initial (and continued?) 'cause' remains yet undiscovered. We now focus on what we DO know, and what we CAN do, which is to combat the inflammation and retrain the immune system.
     
    Having lived with PANS for (only?) 13 months, my main regret is that I didn't initially adopt and convey the same sense of urgent and criticality that any parent might have if their child had suffered a stroke, or a crazy-high fever, or if their child had a more "classic" presentation of Rheumatic or Scarlet Fever. We've been conditioned by our current medical and social construct to treat behavioral symptoms differently from "purely biological" symptoms presentations. We label and treat "mental health" as an entity somehow separate from "health". Although the brain is an organ just like your kidneys, lungs, and the liver, for some reason our culture separates neurological issues into two parts: biological issues and the rest -- "mental health". It was months before I truly grasped how serious this disease can become if flares are not treated immediately and with as much medical firepower as you are comfortable employing. PANS inflammation left to smolder and re-trigger can quickly become your worst nightmare.
     
    I hope you are able to quickly and easily identify an active infection or other clear cause, and that the right antibiotics will eradicate your challenge altogether. I don't know of any statistics citing how many children fully recover at each of the various PANS treatment stages, but the sooner you get comfortable ringing alarm bells and pushing hard for serious treatment quickly, the shorter your trip down the rabbit hole to PANS Land will be.
     
    I'm sorry you're here, but you're not alone. Best of luck to you and your family.
  5. Like
    Albymom reacted to dcmom in Am I imagining things?   
    annieo- I am so sorry you and your family have suffered so much. Your daughter's symptoms sound exactly like my daughters first onset of pandas. My best advice to you would be to find a practitioner that treats PANDAS, hopefully recommended by someone on this board, or pandas network.org. In our experience, they are the only ones who can effectively treat this disorder. Don't waste time, as many have waiting lists. In the meantime, try to keep things as calm as possible. See if your doctor will keep your daughter on antibiotics until you can see pandas doc, and consider treating your daughter with 5-7 days of round the clock (as if she had a fever) advil.
  6. Like
    Albymom reacted to ejh in Am I imagining things?   
    I am sorry about how hard things have been for your family. I just want to say I completely agree with llm. This absolutely sounds like PANDAS/PANS. I also agree that the best thing is to work with someone with experience in treating PANDAS/PANS, and the sooner you do, the sooner you will have treatment.
  7. Like
    Albymom reacted to LNN in Am I imagining things?   
    First, I'm sorry to hear about your son's struggles and the pain you must still be carrying. Kuddos to you for being so able to talk about it and work toward moving forward. It sounds like you're creating a healthy environment for your daughter.
     
    You say you're not one to panic until it's time to panic. Yes, it sounds like it's time to panic (well, not panic, but to listen to your gut). This absolutely sounds like Pandas/Pans. And your pedi is wrong - the urinary issues are indeed physiological and not psychiatric. While I can't give you any published studies, the urinary issues are a hallmark symptom that was common in Swedo's first 50 cases (published in the 90s). One Pandas neurologist suspects that one of the nerves that regulates bladder contractions becomes inflamed and causes frequent contractions. It is not "in your head".
     
    It sounds like there's an infection that isn't being eradicated. You can try to work with your existing medical team, but most of us old timers have found this to be an wasteful approach, both financially and in terms of time wasted. Your best bet is to see a Pans specialist. There's a list of helpful doctors pinned at the top of the helpful threads at the top of the main Pandas forum page and you can get a good list here http://pandasnetwork.org/researchandresources/find-help/usproviders/
     
    In addition to Pandas, due to your family's history, I'd encourage you to learn about methylation. Methylation is the chemical process that, among other things, helps the body create neurotransmitters. If you have certain mutations on certain genes, this chemical process can become impaired. If you know you have certain mutations, and you have psychiatric symptoms that can come along with these mutations, you can use diet and supplements to help the body work around these mutations. So if you have a mutation that causes you to stay high in adrenaline longer than most people, you can take extra vitamin B3, which helps the body break down adrenaline. If you have a certain mutation on one of the genes that helps create serotonin, you can supplement with specific forms of vitamin B9 and B12 and help the body's efforts to make serotonin a little more efficient. This has helped my daughter immensely - both infection and methylation defects create bi-polar mood swings and depression in her. Treating both Pans and methylation has improved her outlook beyond words.
     
    Listen to your gut and pursue Pandas treatments for your daughter. The faster you get this under control, the easier the journey can be.
  8. Like
    Albymom got a reaction from ibcdbwc in I want to know the "why's".....   
    A highly reactive immune system can have many causes. I have given up searching the internet trying to piece all the clues together. Our PANS expert doctor explained that once triggered, auto-immune and/or auto-inflammatory diseases can take up to five years to fully heal. Our daughter sounds very similar to your child. She has always tested negative for everything but she is classic PANS with onset 1 year ago. They eventually deduced a valid hypothesis for a cause (a rare autoimmune disorder), but her specific situation is still fuzzy and anyway it's not really important in terms of the point I want to make.
     
    Our daughter responded very well to abx at first (even though she had no active infections), then she slipped. They moved her to HD IVIG (she's had 5 since Halloween), and to steroids (both oral Prednisone and IV-infused Solumedrol). Each treatment would return her to normal for a few beautiful weeks - sometimes as many as five in a row -- before a cold sore or a loose tooth or a stupid common virus would sink her again.
     
    Because her relapse and remission pattern was so clear, and because it was clear she is triggered by almost any insult to her immune system, our doctors moved us to the next level treatment in January. We are now doing Rituximab infusions and Cellcept to tamp her super-reactive immune system.
     
    My understanding is that these two treatments have, in the past, typically been reserved for "severe" auto immune / auto-inflammatory PANS cases, but our daughter is quite functional and she is now more behaviorally "normal" than not. When she is in remission, she can reach between 90 - 100% baseline "normal". She attends school daily (unless she gets a virus, a loose tooth, or another type of immune system insult), and when she's well she does quite well both socially and academically. It's amazing to us that she's having such a great year school-wise, despite having missed 30 days due to PANS. If you met her or taught her in your classroom, you might not even notice she was different. Yesterday, one of her teachers emailed us to say it is "truly amazing to see the difference" in our daughter between days she's not feeling well, and days when she is 100%.
     
    I've heard that some clinics are moving to Ritux and Cellcept treatment sooner than they would have in the past for kids with continued, highly reactive immune system responses. I encourage you to look into the next level of treatment for your child. Is it terrifying to consider a form of chemotherapy (Ritux) along with an anti-organ rejection drug (Cellcept) for your child? Absolutely. While is was not a decision we made lightly, in some ways wasn't really a decision at all. When the choice is to continue this push-and-pull heartbreak of remission and relapse, when you live in constant fight or flight mode just waiting for PANS to kidnap your kid at any minute, stealing more days from her beautiful life, and when your child has reached steroid toxicity levels and nothing else seems to "holding" her at well for more than a few weeks at a time, then moving to the next level isn't really a choice.
     
    Our daughter's risk for infection is higher because she is now taking these drugs, however, as our doctor put it: "If she gets an infection, we admit her and treat the infection and she goes home. The number one, most critical priority is protecting her healthy brain." The goal is to suppress the auto-inflammatory cycle long enough to give the brain time to heal. This can take up to five years. Many kids are on this protocol for many non-PANS-related conditions and they live very normal lives.
     
    Good luck.
  9. Like
    Albymom got a reaction from MissionMama in I want to know the "why's".....   
    A highly reactive immune system can have many causes. I have given up searching the internet trying to piece all the clues together. Our PANS expert doctor explained that once triggered, auto-immune and/or auto-inflammatory diseases can take up to five years to fully heal. Our daughter sounds very similar to your child. She has always tested negative for everything but she is classic PANS with onset 1 year ago. They eventually deduced a valid hypothesis for a cause (a rare autoimmune disorder), but her specific situation is still fuzzy and anyway it's not really important in terms of the point I want to make.
     
    Our daughter responded very well to abx at first (even though she had no active infections), then she slipped. They moved her to HD IVIG (she's had 5 since Halloween), and to steroids (both oral Prednisone and IV-infused Solumedrol). Each treatment would return her to normal for a few beautiful weeks - sometimes as many as five in a row -- before a cold sore or a loose tooth or a stupid common virus would sink her again.
     
    Because her relapse and remission pattern was so clear, and because it was clear she is triggered by almost any insult to her immune system, our doctors moved us to the next level treatment in January. We are now doing Rituximab infusions and Cellcept to tamp her super-reactive immune system.
     
    My understanding is that these two treatments have, in the past, typically been reserved for "severe" auto immune / auto-inflammatory PANS cases, but our daughter is quite functional and she is now more behaviorally "normal" than not. When she is in remission, she can reach between 90 - 100% baseline "normal". She attends school daily (unless she gets a virus, a loose tooth, or another type of immune system insult), and when she's well she does quite well both socially and academically. It's amazing to us that she's having such a great year school-wise, despite having missed 30 days due to PANS. If you met her or taught her in your classroom, you might not even notice she was different. Yesterday, one of her teachers emailed us to say it is "truly amazing to see the difference" in our daughter between days she's not feeling well, and days when she is 100%.
     
    I've heard that some clinics are moving to Ritux and Cellcept treatment sooner than they would have in the past for kids with continued, highly reactive immune system responses. I encourage you to look into the next level of treatment for your child. Is it terrifying to consider a form of chemotherapy (Ritux) along with an anti-organ rejection drug (Cellcept) for your child? Absolutely. While is was not a decision we made lightly, in some ways wasn't really a decision at all. When the choice is to continue this push-and-pull heartbreak of remission and relapse, when you live in constant fight or flight mode just waiting for PANS to kidnap your kid at any minute, stealing more days from her beautiful life, and when your child has reached steroid toxicity levels and nothing else seems to "holding" her at well for more than a few weeks at a time, then moving to the next level isn't really a choice.
     
    Our daughter's risk for infection is higher because she is now taking these drugs, however, as our doctor put it: "If she gets an infection, we admit her and treat the infection and she goes home. The number one, most critical priority is protecting her healthy brain." The goal is to suppress the auto-inflammatory cycle long enough to give the brain time to heal. This can take up to five years. Many kids are on this protocol for many non-PANS-related conditions and they live very normal lives.
     
    Good luck.
  10. Like
    Albymom got a reaction from rowingmom in Difference between "normal" OCD/Tourettes/ADHD/Anxiety & PANS/PANDAS?   
    Hi
     
    We have our first appointment with PANS experts on Thursday. In the meantime, we are taking life moment by moment and doing a lot of deep breathing.
     
    I am wondering exactly how doctors and researchers can tell the difference between "normal onset" OCD/Tourette's/ADHD/Anxiety kids and PANS/PANDAS kids.
     
    The only difference I have found seems to be related to the speed and severity of symptom onset, but according to the pansppn.org site, even the symptom severity seems to be subjective, ranging from acute to mild/functional (see Treatment Options>General Overview).
     
    If PANS can be "mild", and if it can be a clinical diagnosis, and if it does not necessarily require infection-positive test results, wouldn't it follow that PANS treatments could work for most/all kids with this cluster of issues?
     
    I guess what I'm asking is this: if non-PANS kids can (and do) present with the same symptoms, wouldn't it also be true that their bodies are "malfunctioning" in the same ways as PANS kids? If so, what are the clear biological markers differentiating these two sets of children? I remember reading somewhere that an MRI can illuminate the difference but as you can imagine, the last three months have been a total blur. I feel like a boxer who keeps trying to get up but who keeps getting punched with another diagnosis.
     
    Another way of asking the question is this: how are non-PANS kids usually diagnosed with this cluster of diagnoses? Does it normally take years between each diagnosis?
     
    Thanks in advance for your thoughts. I have already learned so much by combing through this forum!
     
     
     
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