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BeeRae22

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  1. Like
    BeeRae22 reacted to dasu in Question about cunningham panel   
    Do clinical observations - severity of PANDAS symptoms - have any relationship to outcome of Cunningham panel? If one were to administer the test in a flare vs in remission would the results vary?
     
    Does treatment with antibiotics or steroids effect outcome of the Cunningham panel?
  2. Like
    BeeRae22 reacted to mama2alex in Does this sound like pandas?   
    You've basically just listed off many of the most common symptoms of PANDAS/PANS. (I include PANS because it's not always strep triggering the problems.) OCD, tics, rages/meltdowns, separation anxiety, biting/picking, and food restriction are all very common and telltale signs.
     
    You should have her checked for strep, by both culture and blood test, because many have discovered strep without having seen a typical presentation of illness (painful sore throat, white spots on the throat, etc).
     
    The foot pain is a very common symptom of Bartonella, which is an infection you can get from ticks, fleas (from a cat or dog), or a cat scratch, and often goes hand in hand with Borrelia (Lyme Disease). You can search this forum for Bartonella and find many discussions. Many families on this forum have found that Bartonella and/or Lyme, as well as a number of other infections, have played a role in causing their child's PANDAS/PANS symptoms. Rages/meltdowns are also a common symptom of
    Bartonella.
     
    If you can get the PANDAS pediatrician to test for Bartonella and Lyme through Igenex Labs (and they know which tests to order), as well as doing the strep tests, that would be a great place to start. If they won't order Igenex testing, you would be wise to go to a Lyme-literate doctor - they will also be able to test for strep and many other things. Other common infections in these kids are Mycoplasma, Babesia, Epstein Barr (virus), Candida (yeast overgrowth), and HHV6 (virus).
  3. Like
    BeeRae22 reacted to banwh99 in Antiviral working?!? What does that mean?   
    My daughter was diagnosed PANS in Jan and put on Amantadine too. It has antiviral but also anti-inflammatory properties. We suspected viral triggers since we never found strep or other infections. It could be that your child has viral infections triggering her symptoms and/or that the Amantadine is helping with inflammation. Either or both of those scenarios would potentially reduce symptoms....killing viral infection and reducing inflammation.
  4. Like
    BeeRae22 got a reaction from banwh99 in Antiviral working?!? What does that mean?   
    Dd11 was flaring- aggression, rage, OCD, etc. and we tried an antiviral- amantadine- for the first time and it actually seems to be working! Aggression and raging stopped right after beginning it and hasn't returned- it's been about a week now.... So here's the question- coincidence? Was the flare over anyway? Or is it actually working?? Keep her on it? Take her off and see what happens? I haven't researched antivirals much (we've never tried one, so all my experience has been with abx), she still on zith and Bactrim as well....
     
    What does it mean when/if an antiviral does something?? What should I be thinking about going forward?
  5. Like
    BeeRae22 reacted to LNN in Anxiety/psych meds   
    Beerae - right there with you re:not wanting to use SSRIs because it feels like you can never stop. But when my DD11 restricted her eating to 350 cal/day in Aug and couldn't function due to panic attacks, I relented. It seemed cruel to withhold something that had the potential to take the edge off such intense fear and pain.
     
    She started on Lexapro 5mg. It had the immediate effect of making her tired at night - and since her anxiety was keeping her up until 1 am and not allowing her to sleep after I woke for work at 5:30am, this in itself was a benefit. By making her tired, it also significantly cut down on panic attacks, since 90% of them happened at bedtime. But that said, I don't think it made a dent in the OCD, general anxiety or any other issues. She continued to fall off the cliff with other symptoms and continued to lose a dangerous amount of weight. Thankfully, we saw Dr M and he put her on steroids and 2 bx and within 36 hrs, she was a different kid - in a really good way.
     
    Because she still has issues, albeit far more manageable, I find myself in a position where I don't dare pull the Lexapro, or anything else, until she's back to her normal weight and much more steady. So yes, we are sort of stuck with it, even if it's not the thing that turned her around. I do wish I'd done things in a different order and avoided putting the SSRI in the mix, since it does complicate the picture. But...here we are and even if all it's doing is helping with sleep, that's not a bad thing. But once things have been stable for some time, probably next spring/summer, the SSRI will probably be the first thing I look to remove.
     
    You need to do what your gut tells you. If it doesn't help, you'll know you tried. If it does, then that's a good thing. But I totally get your concerns.
  6. Like
    BeeRae22 reacted to MomWithOCDSon 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.
  7. Like
    BeeRae22 reacted to ibcdbwc in Flaring again...thought I was done here   
    I just wanted to say you are not alone. We have experienced joyous periods of remission but gut wrenching recurrences. The roller coaster is unreal.
  8. Like
    BeeRae22 reacted to qannie47 in Flaring again...thought I was done here   
    Beerae22 I wish I had the magic words. Something that could wash away the dread and heartbreak when we as parents realize once again it is not over. Hope. That is what keeps me going after I have a good cry and pull up the bootstraps AGAIN, as I know you will. I try to tell myself that I have come to terms and have accepted that our Journey will not be truly over with for some time. Yet, when long periods of time go by and I see a happy 100% back to baseline child, I start to believe that it is indeed over for good this time around. Hope. Hope is what makes those period of times when our children are in remission so much more miraculous and Hope is what gets us through when the sky has fallen once again.
     
    Don't forget Hope.
  9. Like
    BeeRae22 reacted to SSS in Flaring again...thought I was done here   
    And to all you 'old Moms'
    By being here,
    by responding,
    by reaching out with your experiences,
    is an amazing and beautiful service.
    Thank you---
     
    Nancy, I was thinking of you
    telling of removing Augmentin w/ your son,
    how you slowly tapered it down.
    I'll remember that when I try in 10 years! Ha ha :-/
    But much love to us all.
  10. Like
    BeeRae22 reacted to SSS in Flaring again...thought I was done here   
    Yep, my PANS dd11 had a great year too, so removed Biaxin (taken daily with Augmentin)
    see 'stuff' slowly creeping in, I think 'yeast', play around there, but finally after 2 weeks,
    *I know* even tho I *still can't quite believe it, again!* that the bloody Biaxin calms this child and tamps it down to pretty darn good, with Augmentin.
    Back on Biaxin, about day 3 back on, and it's definitely better-
    the worry being- will it work again?
    Quality of life, not tormented, and self esteem from good actions, all a 1,000 times worth being on the antibiotics.
    And she's been on it a long time. And yes, we've treated and treated and treated Lyme, Bart, mold, etc. etc. etc.
    If it works, keep it!
  11. Like
    BeeRae22 reacted to lw47 in Flaring again...thought I was done here   
    I am right there with you. This feels like it is never going to end. My daughter is 11. She's had problems since age 4. Her second IVIG was last year, and we had 3 good months where the compulsions went away, though still some obsessive thoughts, but much better. Then it all came back. She does well in school, and doesn't have any tics or tantrums, but OCD is present despite treatment. I am holding out hope that puberty/ age will help lessen this, and eventually it will all be gone.
    I wonder if your child has Bartonella, and that's why things worsened when the Bactrim was stopped? Mine used to take that- had Lyme and Bart, along with strep causing PANS/PANDAS.
    I keep reading things about how many grow out of this when older, as long as you've done the appropriate treatments, which we have. My thoughts are with you!
  12. Like
    BeeRae22 reacted to dcmom in Flaring again...thought I was done here   
    I am so sorry. I remember your daughter's story.
     
    I can share Nancy's sentiment. Although we are not there yet with my daughters, things are a lot better. Both girls still flare with pandas, but the episodes are limited to ocd only. While this is still extremely disruptive and sometimes debilitating- both girls no longer have food restriction or mood issues (tantrums, etc) with a flare. It makes life at home happy again, even if ocd is making life outside the home difficult for them.
     
    My hope is that episodes continue to get milder and milder, until they are just a bump.
     
    My thoughts are with you and your girl.
  13. Like
    BeeRae22 reacted to MomWithOCDSon in Flaring again...thought I was done here   
    Yes, Beerae, it WILL be over, one day. It truly will. Never fast enough, or solidly enough for any of us, but it will. And then it'll take you a while to realize . . . to BELIEVE . . . that it actually is over at that point!
     
    I don't know if it's because our kids' bodies, minds and immune systems are still maturing, I don't know if it's because they're constantly subject to new assaults by various microbes, allergens, etc., or if hormones tied to impending or full-scale puberty are a factor, but I do believe your DD will come out the other side of this. Unfortunately, for us, ages 12 - 13 were particularly rough, and then, slowly but surely, each year thereafter got better and better with respect to DS's ability to weather the storms, bounce back after a fresh strep exposure, etc. By 16, he was pretty much 100% on the other (good) side, but even then, PTSD had us walking on eggshells at times.
     
    Hang in there, and hang onto the knowledge that you're doing all the right things, and you'll make it through. Our kids are more resilient than we give them credit for, sometimes . . . if only us more "mature" folks can hold on and share in some of that!
     
    Take care!
  14. Like
    BeeRae22 got a reaction from lw47 in Flaring again...thought I was done here   
    I haven't been on this forum in a very long time, but there are some who may remember me. October 2013 my dd "caught pans" and we were on a horrific long road to recovery.
     
    The past year has been good. Ups and downs, a few rough patches, but all in all pretty good. In fact, for several months (maybe 4 or 5) dd(now 10) was 99.9% back to baseline. Even had the flu and a fever for the first time since onset and made it through with NO issues.
     
    So, about 4 1/2 weeks ago we stopped Bactrim. Still on zith, s acetal glutathione and probiotics. Somewhere around this time dd, ds and I all got a cold.... Se was first, then ds, then me. She is fine now, ds and I still have a cough. Anyway, around the 1-1 1/2 week mark off Bactrim, dd started showing signs of increased anxiety, more frequent hand washing, more worries about getting sick, etc. these behaviors became worse and worse.... Complaining of not feeling well, stomach ache and headache. Missed most of the last week of school because her stomach hurt.... Stupid me, I thought she may have had a stomach bug or something- until she had a complete anxiety attack, including some aggression which she hasn't had in a long time, on her last day of school. I then realized that there wasn't anything wrong with her stomach, she's full-on flaring
     
    We've had difficulty taking her off of Bactrim before-- can't figure out why. She's been on zith the whole time too-- 2 1/2 years now. Just out her back on yesterday..... Here's hoping it works.
     
    Another panic/anxiety attack this morning- missed yet another fun event because she "doesn't feel well". Started pharma GABA drops yesterday-- I thought they were helping last night, but apparently not doing anything this morning dosing her with Motrin as well- doesnt seem to be helping.
     
    I am so VERY tired of all of this..... She was completely back to herself, and here we are again with anxiety, OCD, aggression, etc. I just can't even believe it.
     
    This is never going to be over, is it?
  15. Like
    BeeRae22 got a reaction from whyPANDAS in Tired-Tired-Tired   
    I feel the same right now. Dd10 is raging daily again and we're throwing more abx at her. I'm ready to quit all meds and see what happens. Thing is, she was 100% toward the end of summer until just before Christmas when we had strep in the house- been flaring since and getting worse. What does that mean after 2+ years of abx and treatment? We see a respected Pans/pandas llmd who, like you said, seems to care and I do trust, but he obviously doesn't know the sure answers--so am I making a mistake by keeping my 10 year old on all of these long term abx? And trying different meds and herbals all the time? Maybe the rages are my fault because I'm "letting her get away with things" like my mother and husband suggest lately? Do "normal" kids go into a full-on hitting, kicking, biting, swearing tantrum because they have to watch the tv in the bedroom instead of the living room because their sibling is watching something? Or because their father ate the first cookie out of the batch instead of them? (Granted, she was looking forward to this after her bath tonight, and the rest of us were waiting for her to get out too, but her father didnt know and accidentally ate the first one, and like an idiot, I pointed it out to her- not using my brain! She flipped the f--k out). Is she just "spoiled"? Thing is, she was fine a month ago! Down to 1 abx and NO problems..... How do you go from that, to psychotic over a cookie being eaten?? she threw out the batch, and raged for an hour- and when I finally told her father to get the Xanax, she cried and cooperated when she realized I was serious about making her take it (I've only given it to her once, about a year ago? She didn't like that- it knocked her in her little butt!) -- but what does that mean? That I "scared her straight"?
     
    Not trying to high jack your thread- but I am in the same place as you tonight. Within the past 24 hours I've had 2 of my friends and my mother tell me that she "should see a therapist". That it seems "she can control herself". Maybe I'm the one that's crazy, I don't know. But I'm so sick and tired if more appointments, more money, more meds and no real answers. There aren't any decent "therapists" within a 20 mle radius that take our insurance that I've found... And you can't just go once to see someone-- you have to invest.... Time, money, emotions. I'm tired too. And so fed up with all of it.
  16. Like
    BeeRae22 got a reaction from HopeinHIM in Tired-Tired-Tired   
    I feel the same right now. Dd10 is raging daily again and we're throwing more abx at her. I'm ready to quit all meds and see what happens. Thing is, she was 100% toward the end of summer until just before Christmas when we had strep in the house- been flaring since and getting worse. What does that mean after 2+ years of abx and treatment? We see a respected Pans/pandas llmd who, like you said, seems to care and I do trust, but he obviously doesn't know the sure answers--so am I making a mistake by keeping my 10 year old on all of these long term abx? And trying different meds and herbals all the time? Maybe the rages are my fault because I'm "letting her get away with things" like my mother and husband suggest lately? Do "normal" kids go into a full-on hitting, kicking, biting, swearing tantrum because they have to watch the tv in the bedroom instead of the living room because their sibling is watching something? Or because their father ate the first cookie out of the batch instead of them? (Granted, she was looking forward to this after her bath tonight, and the rest of us were waiting for her to get out too, but her father didnt know and accidentally ate the first one, and like an idiot, I pointed it out to her- not using my brain! She flipped the f--k out). Is she just "spoiled"? Thing is, she was fine a month ago! Down to 1 abx and NO problems..... How do you go from that, to psychotic over a cookie being eaten?? she threw out the batch, and raged for an hour- and when I finally told her father to get the Xanax, she cried and cooperated when she realized I was serious about making her take it (I've only given it to her once, about a year ago? She didn't like that- it knocked her in her little butt!) -- but what does that mean? That I "scared her straight"?
     
    Not trying to high jack your thread- but I am in the same place as you tonight. Within the past 24 hours I've had 2 of my friends and my mother tell me that she "should see a therapist". That it seems "she can control herself". Maybe I'm the one that's crazy, I don't know. But I'm so sick and tired if more appointments, more money, more meds and no real answers. There aren't any decent "therapists" within a 20 mle radius that take our insurance that I've found... And you can't just go once to see someone-- you have to invest.... Time, money, emotions. I'm tired too. And so fed up with all of it.
  17. Like
    BeeRae22 reacted to LNN in Any experiences with Mollescum Contagiosum? Or Bart related bumps?   
    My dd had this for 15 months. It definitely spread to many areas of her body and although one section of bumps would resolve, another area would crop up. Do not reuse or share towels or you can spread the infection. My son ended up getting a few but it stayed more limited. We tried many home remedies. The one that worked for us was to soak a cotton ball in apple cider vinegar and place it onto the bump, then cover it with a bandaid to hold it in place for a few hours. Over 3-4 days of doing this, the bump would turn angry red, come to a head and then scab. It would then disappear over a few more days (no need to apply the ACV once it scabbed). During the angry period, we sometimes had to limit the duration of ACV soaks, as it can be irritating. And the kids hated smelling like easter eggs (the ACV has that distinct smell that reminded them of dying eggs). But it worked and if they could suck it up for 3-4 days, we'd get rid of the bumps. I only wish we'd done it when the infected areas were small. Having to treat many many bumps too a long time to tackle.
     
    Try the ACV on a few bumps. If they turn red, it's probably molluscum. If you see no change, it's probably something else.
  18. Like
    BeeRae22 got a reaction from MomWithOCDSon in Do I need to get a 504 plan or IEP? DS starting high school this fall   
    My dd is much younger than your son, but as far as school goes if his disorder is affecting him academically than I would push for an IEP. If school were in session than a 504 would get him accommodations faster, but you have time to have an IEP in place before the new school year begins. This should include any work that would need to be done over the summer so he doesn't fall behind. Research IEP's and 504's online, there is probably a child advocate in your area too if you need help- learn your rights and then tell the school what he needs. You will need to have all of your information together- have your son's doctor write up a diagnosis and statement that he's being treated in his office, etc.
     
    As far as having him do math at home, I would keep it light, not push, but give it a try- with zero pressure. He's old enough- let him have most of the control over how to approach it. Try to talk to him about it when he's having a good moment- see what he has to say. Don't threaten having to repeat the class- that would probably just cause more anxiety. Just tell him that since he missed some school that you need to see if he can make up some of the work, but if he can't than he can get to it later on after school starts.....
     
    I had a lot of homework issues with my dd when she was in exacerbation... I learned that calm and relaxed is the best way to go- if he can't do it than there's no point in pushing- he'll get there eventually.
     
    Best wishes
  19. Like
    BeeRae22 reacted to jan251 in Additional Tests for PANS when initial results negative?   
    I would look around for a PANS/PANDAS specialist. The concern with going through regular doctors is that even when they're open to ideas, they don't have the expertise needed to go about this in an efficient manner. It's hard enough even with an experienced PANDAS doc to get to the bottom of things.
     
    With chorea-type movements and sudden-onset OCD, it would seem prudent to continue exploring PANS and, sorry to say, you are a long way off from exhausting possible things to test. Somewhere there is a list of things to test, try here for example.
     
    As for lyme, I can't recall the percent, but many people do not have a known tick bite and still test positive for lyme (my own child included; not that lyme treatment has been the silver bullet we were hoping for, at least not yet). When a person's immune system is wacky, lots of different infections can show up. It can get complicated.
     
    If you haven't tried already, I'd probably also ask for a trial on an antibiotic.
  20. Like
    BeeRae22 got a reaction from mmiglio in Next step-Mycoplasma-Homeopathic treatment or herbs?   
    Following.....
     
    My dd(9) has myco p triggered Pans. She's been on combo intracellular abx for 1 year now- it wasn't until 8 months and the introduction of Mino that we saw her myco p levels finally in range.
     
    We are now considering very slowly transitioning to herbals and addressing her 1 MTHFR mutation.
     
    I would also like to hear recommendations, etc. related to myco p.
     

  21. Like
    BeeRae22 got a reaction from valsmom in Mycoplasma IGM after treatment   
    IGM refers to a current or recent infection. Those numbers are still really high. We've been treating my daughter for 14 months for myco alone. She has been on Zith the entire time, and has been on 2 other abx for most of the time too.... Most importantly though, if your dd is still having symptoms, than you need to continue, and possibly add other intracellular abx. What are the IGG's? >5 I would assume.
  22. Like
    BeeRae22 reacted to Surfmom in Even the dog goes to hide during a rage...   
    Ha, well...we have four dogs...and they go slinking off, ears dow and tails tucked whn when DD17 goes into a rage. I really feel sorry for them because it doesn't fit into their scope of understanding.
     
    The one thing I have to suggest..and it's the first thing we always do...is to put our dogs in a room with the door closed as soon as things start to ramp up. My fear is that DD might hit, kick or knock one aside in a rage (180 degrees from her healthy state of wanting to be a vet) ...or in a really bad situation the dogs might try come to my defense since they consider me to be alpha or mom.
     
    We never thought our children could rage like this....and I am sure we could never imagine our sweet dogs biting a child....
     
    But this is some kind of strange parallel universe.
  23. Like
    BeeRae22 reacted to Surfmom in New Parents: Advice From the Trenches   
    My daughter has one of the most severe and drug-resistant cases of what falls under the big umbrella of a strep-induced autoimmune disorder that left her with severe neurological and significant joint involvement. For those who don't remember us, my daughter was an exceptional student and athlete, and world's happiest and easy child to raise - until the bottom fell out two years ago. In a matter of a days she suddenly and frighteningly developed Sydenham's chorea, tics, mutism, mood swings, joint pain and swelling. aversions, delusions, rage and host of other heart-breaking symptoms. It has been a tremendously challenging road and so as an unwilling seasoned veteran here is the advice I am giving to anyone who thinks their child has PANDAS, PANS, LYME or any other unusual/frustrating unnamed condition.
     
    1. Do NOT waste time. The first time you see symptoms that do not clear up permanently after a round of antibiotics, get real help. Any of the symptoms I have described indicate your child has neurological inflammation. For the majority of kids, this could mean your child has cross-reacting antibodies, that are attacking your child's healthy tissues. For many kids this could involve brain, heart or joint problems so you absolutely need to rule out any potential damage, especially heart involvement (this was the one potential result our daughter had). The longer you go, the more damage that can result and the harder it will be to treat. This means:
     
    2. Your child has a PHYSICAL disease with psychiatric symptoms resulting from inflammation so you need the right specialists. If your child has recurrent or ongoing flares after antibiotic treatment, and you are only seeing a psychiatrist or PANDAS doctor who has not done a full spectrum of physical diagnostics (MRI, heart ultrasound, tests for Lyme, allergies, inflammatory markers, titers, etc.) then ask your pediatrician for a pediatric neurologist referral. Remember this is PHYSICAL. I can't emphasize this enough: If you can, go see a neurologist and an immunologist.
     
    3. It's not in a name, so don't get stuck with a label. I know we all want that relief/satisfaction of saying my child has "PANDAS" or some other condition, but that can predispose physicians to start treating before a real diagnosis and plan is put forth. For example, we ran off immediately to USF for PANDAS evaluation, at which they gave us some surveys, talked to us and then tossed us some antibiotics with a diagnosis of PANDAS. Not one physical diagnostic test was done and we were foolish to go along with that. In time, they would have ramped up to IVIG, etc....but I would never have known that my daughter could have had heart damage. For those wanting a name., honestly, ( For the math-minded I think we are talking about a spectrum of autoimmune diseases that could be plotted on a coordinate plane of X and symptoms on Y, to find that our kids are scattered all over the place) I think there are as many names for these diseases as there are kids. Just call it, "Insert your child's name here" disease. I am kidding - but also not. The many presentations of these diseases explain why they sound akin to others (like Lupus) and yet different when we talk to each other here. Also, never mention diagnosis to insurance providers. Many are looking for reasons to reject claims so let your doctors and insurance companies play the coding game.
     
    4. Take meticulous notes regarding symptoms.Take pictures and video even at bad times. Trust me, you will forget. Look for subtle things like handwriting and appetite changes, sleeping changes, expression of unusual ideas, reduced speech. When first met our neurologist, I came in not with a disease name but a table of symptoms, date of onset, severity and frequency. I wanted them to diagnose without predisposition.
    5. Don't worry about the bandaids - yet. I know a lot of us sweat everything from glutens, to certain amino acids to micronutrients. Until you rule out allergies, known genetic deficiencies....don't lie awake at night and wonder whether or not you are missing some esoteric piece of the puzzle. Feed your child well, make sure they are getting plenty of vitamin D (low is usually indicative of a chronic inflammatory process), and as many nutrients as they can from real food. You are a good parent, and while the little things will help along with a healthy lifestyle, there is no magic pill. Proper diagnostics will eliminate a lot of concern about allergies and root causes so you don't waste a fortune in time and money trying this and that. We are desperate and vulnerable so read everything with a critical eye.
     
    6. Trust your gut and assert yourself. I went to FOUR doctors and had three ER visits with my daughter, shaking my head and respectfully telling them we were moving on when they told me she was probably just depressed. WRONG. (Tangents: I think our world, present and past is full of kids who are under-diagnosed for physical problems, and there is NO difference between mental health and health. It's just health).
     
    7. Your child is not your child. There is no way that sweet baby of yours would ever do the things he/she is doing if he/she was healthy. Easier said than done - but do not take it personally. That said, reasonable consequences apply. If your child is having severe outbursts, you have to remind yourself: THIS IS THE DISEASE. Say it like a mantra if you have to.
     
    8. Get healthy and fit. I have had to care for my daughter for two years 24/7. Most of you will not be like that. It's going to try your body, mind and spirit. It's going to be hard so you need to be battle prepared. At times, you are going to be scared, angry, tired, frustrated and lonely so you are going to need to be at your best like no other time in your life. Get sleep and don't worry if there are fingerprints on the appliances and the car needs vacuuming. My family has learned that no matter what, I am taking an hour a day to run or surf.
     
    9. Get brave and tough.. People closest to you are going to hurt your feelings, and give you unwanted advice. Head them off at the pass and tell them that you are on top of all the research and protocols (you need to be), that this is going to be stressful, that you are so grateful for their support, but that the things you can't have them do include _______. For me, it was advice on how to parent...like when my daughter would be defiant, or when I chose to keep her out of the public eye when her tics and chorea were severe. Doing that up front will save all of you a lot of misunderstandings down the road. The "Loving but Uninformed" in your life will give you some bizarre advice at times; take it in the spirit in which they meant it. At the same time, get soft. For me, this meant learning to accept help from other people. I have always prided myself in being able to be self-reliant, being able to do it all, but with this spectrum of disease - forget it. I have learned that letting people help is not a sign of weakness, but an acceptance of kindness that can really make a difference. The people around you who really care want to help. Let them.
     
    10. Slow down the clock. You aren't going to get it all done. At times you are going to be late to school. Sometimes you won't get to a place at all. You might even miss a major life event like a close friend's wedding, or as it is in my case...your chid might even miss a year of school. It will work out.
     
    11. Read it all, get informed, stay on top of it...and then walk away at times. You cannot live and breathe this everyday without becoming obsessed in an unhealthy way. My daughter loathes it that I pick up on every tic, and my husband got tired of my talking through the study results in the third standard deviation for the sample size of 12 for the methylation of a certain gene expression (whoa, sexy AND romantic) when we crawled into bed at night. (The main reason I come and go from this website .)
     
    12. Go out at a minimum of twice a month for the evening. The only rule: Thou shall not talk about thy child or thy child's disease. Also keep something out there a month or two away to look forward to...beach, trip to parents, buying a new sofa, camping trip. Finally, don't forget the healthy siblings and your SO. As much of a nut as I am about healthy eating, sometimes a little love and acknowledgement is as easy as a box of walnut brownies that can be mixed and tossed in the oven in two minutes...with a PostIt note alongside.
     
    After two years of IVIG, Cellcept, Rixtuximab and Cytoxan, we are finally knocking down the world's most persistent immune system and our daughter is slowly getting better. Chorea is gone, tics gone, OCD gone, moods better, tremors gone, ataxia gone, mutism gone, catatonia gone, sleep patterns good, aversions gone, eating well, engaging with the family, smiling, laughing and has some quality of life.
     
    Long story short: Treat physically and if a child like ours (who is probably one of a handful of the most profound expressions ever on this disease spectrum) can get fully back on the happy and healthy track - yours will too.
     
    I am not editing. I used to. I don't anymore. See? LOL
     
    (Ok, confession... I came back and read this AM, and gently tweaked the typos).
     
    A thousand blessings your way!
  24. Like
    BeeRae22 got a reaction from searching_for_help in Fasting and the immune system   
    Although my opinion may be swayed by my dd's severely restricted eating as a results of Pans, even prior to that I don't think I would've ever considered having a child deliberately fast. Children are growing and need consistent nutrition- they aren't just "adults in miniature bodies". I think that not only would it pose a risk physically, but considering that most children with Pandas/Pans have OCD, having a child fast unnecessarily could send an unhealthy, or even dangerous message to someone with a compromised and impressionable mental state.
     
    Just my thoughts of course, everyone has a different take on treatment methods, but IMHO this shouldn't be on anyone's list for "treatment trials" for children.
  25. Like
    BeeRae22 got a reaction from dcmom in Fasting and the immune system   
    Although my opinion may be swayed by my dd's severely restricted eating as a results of Pans, even prior to that I don't think I would've ever considered having a child deliberately fast. Children are growing and need consistent nutrition- they aren't just "adults in miniature bodies". I think that not only would it pose a risk physically, but considering that most children with Pandas/Pans have OCD, having a child fast unnecessarily could send an unhealthy, or even dangerous message to someone with a compromised and impressionable mental state.
     
    Just my thoughts of course, everyone has a different take on treatment methods, but IMHO this shouldn't be on anyone's list for "treatment trials" for children.
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