Jump to content
ACN Latitudes Forums

dasu

Members
  • Content Count

    261
  • Joined

  • Last visited

  • Days Won

    17

Reputation Activity

  1. Like
    dasu reacted to MomWithOCDSon in what is next best anti-inflammatory?   
    We never tried dao histamine blocker, but I can speak in the affirmative with regard to quercitin; really seems to help with really no side effects at all.  In fact, DS and I both had been taking it for years (DS is a junior in college now), and when I ran out a few months ago and DS was away at school, I decided to just let it go and stop taking it.  After my mold allergy started ramping up, however, and I couldn't get relief from Zyrtec or any other typical OTC measure, I went back to taking quercitin, and within about a week, I had significant relief.  Great stuff!  We like the "QBC Complex" from SolaRay as it also has Vitamin C and bromelaine, along with the quercitin.
  2. Like
    dasu got a reaction from tj21 in 7 years of PANDAS   
    You have a heartwrenching story.  I do understand the feeling of wanting to give up.  This torture goes on for years, it seems that most of the health care industry, insurers and even friends and family are fighting against appropriate care.  It seems there are few success stories.  I totally agree - you are not a failure as a parent.  You sound like you have poured all of yourself out into the bottom-less pit of PANDAS.   I hope that you can find some rest and comfort in this time and that your daughter can one day find recovery.
  3. Like
    dasu got a reaction from BeeRae22 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?
  4. Like
    dasu got a reaction from mama4 in Glutamate and Pandas   
    My kids have been kinda-sorta REID for a while.  REID is more than just low glutamate but also targets meat consumption at 20% (I think) and lots of raw greens, vegetables etc...among other things.  Its super expensive to do this.   And like the posters above we found it super difficult to do, given all of other things they have given up, and it has a lot of social impacts on the kids.  We have made progress reducing free glutamates (REID does NOT worry about glutamates in vegetables, they are bound) We try not to have processed meats, e.g. use fresh pork sides and salt them afterwards.  They only drink raw milk.  We try to do lots of greens but mainly in the summer out of the garden (cost.).  No processed foods, which means we eat whole foods.  Very little sugar.  But I can say that we do see improvements.
    To us the big question is their seasonal PANDAS spikes.  If we chart their symptoms they begin to increase in October and peak in December and then have another shorter spike in the March or April.  We used to think it was allergies but wonder if its something else like diet.  For example we used to let the kids do Halloween candy but noticed they  would be awful afterwards.
  5. Like
    dasu got a reaction from EAMom in New Yale Vaccine Study   
    Thank you both for sharing. I found wakefield's point on how environmental effects can combine to produce more severe issues fascinating.
     
    One study I would like to see is adopted kids in P families. I know of one family where both the biological child and adopted child have P.
  6. Like
    dasu got a reaction from xh1688 in Dr. L or Dr. T?   
    My sister's P-kid (adult, with severe depression, cognitive issues, bi-polar; who also went through multiple lyme infections) saw Dr T. They did a series of expensive tests that showed infections, which they treated. His condition improved some then deteriorated. He then did more genetic testing which netted nothing. They were disappointed and dropped him without pursuing further treatment. As far as I know he advocates IVIG but I have not read of many patients of his who have done PEX or Rituximab. If others have seen any contradictory information please correct me - there are some very devoted patients of his who may know better.
     
    We have used Dr L. She treats traditional strep mediated PANDAS but is open to PANS, although she herself will not treat other infections. If you use her I would also get Lymes and coinfection test as well other PANS drivers. Dr L is great.
  7. Like
    dasu reacted to 5patsfans in Why do tics from PANS get worse when my son is around our family or other people   
    My ds now 13 pans and Lyme has this problem also. I asked his doctor at the time and he said it was adrenaline. It seemed to make sense for him. He would tic really badly when he was playing football, watching a movie or doing things that got his adrenaline going including social situations.
  8. Like
    dasu reacted to mama2alex in Bartonella - study shows trans-placental transmission   
    This just popped up on my FB feed. IMHO, moms of PANDAS/PANS kids always need to take a closer look at their own health, especially if your child has had any issues since early on.
     
    https://www.lymedisease.org/423/
  9. Like
    dasu got a reaction from MissionMama in I want to know the "why's".....   
    We are all there. Isolated, frustrated, abandoned, whatever.
     
    A lot of the misery is from kids who are just sick but attack us parents verbally and physically, refuse to cooperate with about anything and instead try to order us parents around. Abuse from kids, abuse from doctors, abuse from insurance companies, etc. About the only two places I feel welcome are Dr L's and their psych doc.
     
    lll bite. Here is my stream of consciousness rant. I have really struggled with the isolation and sense that life is passing us and our kids by. Other people are moving along with financial plans - their stock portfolios, their 401ks, 529s while all of our money goes to medical treatment. We see people taking vacations, we can hardly leave the house without anxiety. The parents are involved in activities outside the home, moms exercise or get to meet up and talk, dads get to go out and hunt and fish; we, if fortunate enough to get the kids asleep, sit in silence and browse around on the ipad. We watch their kids excelling in school, sports, arts, music; we call a few minutes of surreptitious home school a success. Well they do play piano well enough. Families at church talk so much about instilling morals and values in the kids; ours have no respect for parents, talk about cutting heads off and weird proto-sexual notions that bounce around in their head. If I get on facebook everyone has these super cute pictures of their beautiful kids; ours are posing obscenely; my daughters hair is a frizzy mess because she cant bear to comb it; both kids teeth are yellow because they refuse to brush their teeth;yet I am just happy they are wearing any clothes at all;.
     
    I was reading to my kids a while back from the Little House series. When I was a kid I took away the adventure they lived and the awe of moving to wild and fresh places before civilization came. Nowadays I appreciate those books because I see the adversity they endured and overcame. This was old school, they were supposed to grin and bear even starvation. I have taken in a lot of lessons. IOne of my favorite quotes is from Ma "The sooner you accept that life is hard the more you can appreciate the good things in life". Appreciation of the simple things shines through those books, whether it was joy for a single piece of Christmas candy or over the joy her family brought her.
     
    PANDAS is transforming me as a person. I no longer get spend time fawning over little things, like houses, clothes, new cars. Some of that is not by choice, some of it is. I fought it at first but now have moved into acceptance, and with it realization that my values were being changed in this awful mess. I saw this very same change occur with my sister who has two PANDAS kids. I did not get it at the time, but I do now. So many things she valued and sought to instill in her kids were stripped from her - love, education, achievement, culture, art, world travel. She went from plotting out educational experiences and inspiring vacations to plotting out doctors visits and churning through endless rounds of psych meds and alternative treatments. She fought so hard for her kids and had to focus on friends and care. She is recovering some of her life now that her two sons are older (and dysfunctionally stuck at home sadly). But she is also able to enjoy seeing her youngest son thrive in college and a engage in a rich social life.
  10. Like
    dasu got a reaction from ibcdbwc in I want to know the "why's".....   
    We are all there. Isolated, frustrated, abandoned, whatever.
     
    A lot of the misery is from kids who are just sick but attack us parents verbally and physically, refuse to cooperate with about anything and instead try to order us parents around. Abuse from kids, abuse from doctors, abuse from insurance companies, etc. About the only two places I feel welcome are Dr L's and their psych doc.
     
    lll bite. Here is my stream of consciousness rant. I have really struggled with the isolation and sense that life is passing us and our kids by. Other people are moving along with financial plans - their stock portfolios, their 401ks, 529s while all of our money goes to medical treatment. We see people taking vacations, we can hardly leave the house without anxiety. The parents are involved in activities outside the home, moms exercise or get to meet up and talk, dads get to go out and hunt and fish; we, if fortunate enough to get the kids asleep, sit in silence and browse around on the ipad. We watch their kids excelling in school, sports, arts, music; we call a few minutes of surreptitious home school a success. Well they do play piano well enough. Families at church talk so much about instilling morals and values in the kids; ours have no respect for parents, talk about cutting heads off and weird proto-sexual notions that bounce around in their head. If I get on facebook everyone has these super cute pictures of their beautiful kids; ours are posing obscenely; my daughters hair is a frizzy mess because she cant bear to comb it; both kids teeth are yellow because they refuse to brush their teeth;yet I am just happy they are wearing any clothes at all;.
     
    I was reading to my kids a while back from the Little House series. When I was a kid I took away the adventure they lived and the awe of moving to wild and fresh places before civilization came. Nowadays I appreciate those books because I see the adversity they endured and overcame. This was old school, they were supposed to grin and bear even starvation. I have taken in a lot of lessons. IOne of my favorite quotes is from Ma "The sooner you accept that life is hard the more you can appreciate the good things in life". Appreciation of the simple things shines through those books, whether it was joy for a single piece of Christmas candy or over the joy her family brought her.
     
    PANDAS is transforming me as a person. I no longer get spend time fawning over little things, like houses, clothes, new cars. Some of that is not by choice, some of it is. I fought it at first but now have moved into acceptance, and with it realization that my values were being changed in this awful mess. I saw this very same change occur with my sister who has two PANDAS kids. I did not get it at the time, but I do now. So many things she valued and sought to instill in her kids were stripped from her - love, education, achievement, culture, art, world travel. She went from plotting out educational experiences and inspiring vacations to plotting out doctors visits and churning through endless rounds of psych meds and alternative treatments. She fought so hard for her kids and had to focus on friends and care. She is recovering some of her life now that her two sons are older (and dysfunctionally stuck at home sadly). But she is also able to enjoy seeing her youngest son thrive in college and a engage in a rich social life.
  11. Like
    dasu got a reaction from libera in I want to know the "why's".....   
    We are all there. Isolated, frustrated, abandoned, whatever.
     
    A lot of the misery is from kids who are just sick but attack us parents verbally and physically, refuse to cooperate with about anything and instead try to order us parents around. Abuse from kids, abuse from doctors, abuse from insurance companies, etc. About the only two places I feel welcome are Dr L's and their psych doc.
     
    lll bite. Here is my stream of consciousness rant. I have really struggled with the isolation and sense that life is passing us and our kids by. Other people are moving along with financial plans - their stock portfolios, their 401ks, 529s while all of our money goes to medical treatment. We see people taking vacations, we can hardly leave the house without anxiety. The parents are involved in activities outside the home, moms exercise or get to meet up and talk, dads get to go out and hunt and fish; we, if fortunate enough to get the kids asleep, sit in silence and browse around on the ipad. We watch their kids excelling in school, sports, arts, music; we call a few minutes of surreptitious home school a success. Well they do play piano well enough. Families at church talk so much about instilling morals and values in the kids; ours have no respect for parents, talk about cutting heads off and weird proto-sexual notions that bounce around in their head. If I get on facebook everyone has these super cute pictures of their beautiful kids; ours are posing obscenely; my daughters hair is a frizzy mess because she cant bear to comb it; both kids teeth are yellow because they refuse to brush their teeth;yet I am just happy they are wearing any clothes at all;.
     
    I was reading to my kids a while back from the Little House series. When I was a kid I took away the adventure they lived and the awe of moving to wild and fresh places before civilization came. Nowadays I appreciate those books because I see the adversity they endured and overcame. This was old school, they were supposed to grin and bear even starvation. I have taken in a lot of lessons. IOne of my favorite quotes is from Ma "The sooner you accept that life is hard the more you can appreciate the good things in life". Appreciation of the simple things shines through those books, whether it was joy for a single piece of Christmas candy or over the joy her family brought her.
     
    PANDAS is transforming me as a person. I no longer get spend time fawning over little things, like houses, clothes, new cars. Some of that is not by choice, some of it is. I fought it at first but now have moved into acceptance, and with it realization that my values were being changed in this awful mess. I saw this very same change occur with my sister who has two PANDAS kids. I did not get it at the time, but I do now. So many things she valued and sought to instill in her kids were stripped from her - love, education, achievement, culture, art, world travel. She went from plotting out educational experiences and inspiring vacations to plotting out doctors visits and churning through endless rounds of psych meds and alternative treatments. She fought so hard for her kids and had to focus on friends and care. She is recovering some of her life now that her two sons are older (and dysfunctionally stuck at home sadly). But she is also able to enjoy seeing her youngest son thrive in college and a engage in a rich social life.
  12. Like
    dasu reacted to MissionMama in I want to know the "why's".....   
    Thanks for the responses so far. Of course Lyme and co is in the back of my mind....the very back, I will admit. We have almost zero exposure to tick bites where we live (urban-ish Washington State), and he has never had any *classic* symptoms. That said, the naturopath wants to see how the next 3 months go with some consistent IVIG under our belts and if we are still playing the up and down seesaw then she will order a whole slew of tests that may determine underlying infections, including lyme, (yes igenex), various infections, even mold is on the list (we built our house 10 years ago...I can't think of where mold could be....though it is very wet here in the PNW).
     
    The theory of his immune system being in overdrive makes sense to me....just need to find out why I suppose. For any of these tests we need to wait at least 6 weeks post IVIG so that we don't get any of those antibodies in the mix. We have not tested anyone in the house as carriers for strep....and I suppose we haven't done anything out of the ordinary to try to minimize his exposure to the real world post IVIG's either. We have never been instructed to do that - is there a protocol that we are missing here?
     
    I would have so much more patience with it all if he would just get to school!! And honestly if he was able to do any amount of work here at home we could at least bridge the gap with some sort of academics aside from the newspaper, mad libs (these can get hard! who knew?) and random documentaries here and there. But for him, it isn't school as a place, or about the people....it is great and the people are great, and my kiddo is very well liked....but there is something cognitive going on that triggers anxiety around doing any "work"..... He is such an articulate and communicative kid and it is confusing for me (and him) to not be able to put a finger on why it is the work that causes him the angst. Can he not concentrate? Can he hear in the classroom okay? Can he see? All of the questions that may lead to some good information always lead back to the same place: which is a very sad and frustrated "I don't know"....it is just heart wrenching. None of our kids want to live this way.... Okay, now I am just venting!
     
    Just so sick of it all...and I admit to being in a why me mode at the moment. All the *normal* chatter at drop off for my daughter, parents b*itching about the most inconsequential things (trust me, I wish it was me!). I really don't want any attention, but it does sting a little that most of the questions about DS have stopped - even from some of our very good friends - but I suppose I don't blame them. How many times for the same questions with the same sigh's and I don't knows can anyone take? That being said, how about a flippin' casserole or something??? I'd love a random greeting card to accompany all the medical mail that comes...??? It is all so isolating.
     
    Thanks to all my fellow warriors....keep any advice or commiseration coming. You know what they say about misery....
     
    Kristi
  13. Like
    dasu got a reaction from MissionMama in I want to know the "why's".....   
    Sorry to hear this.
     
    I have nothing constructive to add except to state that my kids are in that very same boat. I know what its like, seeing how each exposure (and no signs of infection) progressively sets them back in a cumulative sense. The only unturned stone so far is mold but we are moving a week.
     
    Have you given your kids time to heal before sending them back into the real world? I understand that repeated HD IVIG will depress Iggs, and we have observed that for both kids. Have you tested for that?
     
    One more point - have you done strep carrier testing for your family and pets?
  14. Like
    dasu got a reaction from Gpookie in Tics as new symptom   
    Do tics run in your family?
     
    We used to ignore early symptoms of PANDAS. They seemed initially manageable for both parent and child. A little anxiety, some ADHD and tics. We could get by. But then the kids seem to spiral down with each exposure, becoming progressively difficult to manage with high levels of ADHD, ODD, OCD etc. By that point the kids are discouraged and we parents are exhausted and not the best of care takers for our kids.
     
    The flip side of that is many kids will experience small flares from an exposure or allergies that subside after some period of time.
  15. Like
    dasu reacted to rowingmom in Tired-Tired-Tired   
    You can't allow your children to eat pesticide laden crap and expect their gut microbiome (and thus immune response) to function.
     
    Environmental toxins (and that includes vaccinations) are slowly killing our children and producing improper immune response. We all need to WAKE UP to this fact.
     
    http://people.csail.mit.edu/seneff/
     
    We need to detoxify them (see Gerson in the video) and support proper immune response using nutritionally dense diet (see Terry Wahls). The problem is not the infections.
     
    Thanks for the video sf_mom. I have been contemplating prophylactic Sota for a while, even though DD14 is now totally asymptomatic.
  16. Like
    dasu reacted to rowingmom in abx and PANS   
    For that reason it would be best to figure out which infections you are dealing with. As you say, viruses will not respond to abx, nor will every bacterial infection respond to the abx regularly given for strep-induced PANDAS.
     
    If you feel that viral infection is the trigger, treat the virus.
     
    I would try finding something other than an antibiotic to function as an anti-inflammatory. It's just not worth destroying your gut microbiome when there are other options.
  17. Like
    dasu got a reaction from whyPANDAS in Tired-Tired-Tired   
    Very sad, but well put. It would be a good read for the naysayers if they would only read.
     
    I have I have nothing to add except that we are in similar straights. The kids are still mired in flares, exhausted, stressed out and watching all of our money fly away. Our bodies feel like they are going to break, we hardly get any time to care for ourselves. Our marriage is stressed but OK, but then we don't do anything normal couples do. We are isolated. The people that should be there for us - doctors, insurers, family, friends, church - are absent. They just bring the added burden of trying to "get them on board". There are so many that offer authoritative plans without following through - but are always looking for money.
  18. Like
    dasu got a reaction from MomWithOCDSon in abx and PANS   
    Some antibiotics also have anti-inflammatory and immune modulating properties. For example the macrolides (e.g Azithromycin) are good. Another different example is augmentin which contains the an anti-inflammatory, clavulanic acid . Pubmed has a lot of good specifics on these meds.
  19. Like
    dasu reacted to dcmom in PEX coverage & alternatives   
    I am so sorry for what you are going through.
     
    I have two pandas daughters. I agree with the genetic predisposition. Most of the (limited) literature on pandas alludes to a genetic predisposition. Strep (and other illnesses) trigger pandas in some with this predisposition. What is seems to trigger, however, is an autoimmune disorder, which can subsequently be triggered by many things, some you will not find. Strep is thought to trigger other autoimmune disorders, so this makes sense. The same autoimmune disorder varies from patient to patient, think MS or lupus. Some may die of those disorders, some have long periods of remission. Doctors don't really have a great handle on triggers, or treating, for many of them. This is what I see in my girls. They were originally triggered by strep- but since can be triggered by an upper respiratory infection, or not, or can be triggered by something that we cannot figure out. They can have long periods of remission- 2 years, or short. For my kiddos, unlike some others, they do not get sick more frequently or have a hard time getting over illness- that part is normal. Anyway- this is what we see in my two girls- which seems to line up with Swedo's vision of pandas.
     
    Both of my girls have had pheresis twice. All four times, UHC has denied our request for a pre approval. All four times we have pre paid to the hospital. All four times, we submitted the claims anyway, and all four times UHC has then paid. It sucks. It is not easy to come up with the $$. One time we borrowed from my dad, one time we withdrew from 401k, and other times we were lucky to have the money. We have spent so much money over the years on this disorder. Frustrating. We had miraculous results 3 of the 4 times they had pheresis. The most recent time, my younger had pheresis in early December, and we are seeing improvement, but much s-l-o-w-e-r. Unfortunately, pheresis is not a cure. It can be a cure for that episode- but there will/ may be another.
     
    I agree with demeter. We have done therapy at USF in FL (managed by same doc as the Rogers program there) and at times that has been the answer. But I do think if they are in the "crazy" out of control place, medical treatment may be needed be4 therapy. I can kinda see with my kids- what they might need. If they are somewhat stable, but ocd and odd- therapy may help. It will also be a lot cheaper (UHC covers both programs- and even if it doesn't fix them, because they need medical treatment, it can take them from where they are to a better place. So financially it might make sense to give that a go before medical intervention-
     
    The last thing I will suggest are psych meds. We resisted for a long time. Now both of my daughters are on prozac. It was a miracle for my younger daughter who could never seem to get back to baseline even in between flare ups. Brought her back to baseline in 2 weeks. The prozac of course does not prevent pandas flares, but for my girls it has really helped stabilize their mood through pandas episodes. They are both in flare ups now, but their mood is fine, they are really only combatting ocd, which while that can be debilitating, we can still enjoy family life. We are currently trying to raise the dose to see if it helps the ocd, so far no.
     
    Good luck. I commiserate that having two pandas kids makes this nearly impossible. Logistically and emotionally. So many times what might be best for one, doesn't work for the other, etc. Plus financially, paying for two is of course twice as hard.
  20. Like
    dasu reacted to dasu in PEX coverage & alternatives   
    Thanks all for the words and encouragement. We have found it difficult to think clearly in the midst of the chaos. There was a point I felt that we as parents were handling this well, but I think that time has worn us down and we aren't nearly as patient and hopeful. I know the kids see that. The ODD in particular has eaten us up.
     
    We have tested for viruses, mycoplasma etc. Mycoplasma did come up slightly over the limit in my daughter. We tried acyclovir last year after the kids got coxsackie after their IVIG; it did not seem to change. Is there a test for staph?
     
    @llm We did not do mold tests but it looks like we are finally moving out of our house in April. Living for short periods outside the house have not changed symptoms.
     
    powpow sent a list of tests to do but to date Dr L did not want to do them and our primary doc also did not want to do that. Really...why are docs so resistant to ordering tests?! We were able to get an appointment with a pediatric endocrinologist and are on the hunt for a more open-minded doc.
     
    One item that really pops out for me is that my kids cousins on my side have all had PANDAS symptoms (although neither my generation or my parents do). One sister has a son age 24 with autism, another son age 22 who had all the marks of P and is now living at home depressed unable to do school or work, a third who had some P issues but is OK now excelling in college. My other sister has one P kid age 12 who has had OCD, anxiety, but is managing with meds and counseling; she has a second daughter who is doing well. So this seems to imply some genetic root, with an environmental trigger(s). The question is what that trigger is.
     
    I think your suggestion for counseling makes sense. As the flare has grinded on they have drifted further from normal life.
  21. Like
    dasu reacted to demeter in PEX coverage & alternatives   
    I cannot reply to the PEX part of this post. However, i can totally relate to being at your wits end!!! We were the same way with our son! We tried multiple medical interventions, including years of antibiotics (targeting mycoplasm, strep, Lyme, babesia, and bartonella) steroids, T&A, anti-virals, methylation, diet changes, 12 HD IVIG's and I'm probably forgetting some:(. When we really, really were at our "wits end", we decided to go to Roger's Behavioral Health in Tampa. I cannot be grateful enough! This really was a life changer for our son and our family!!!! And the six weeks were covered by Aetna. I would never have imagined we could be where we are as a family, really back to our normal baseline before this Pans s$#t hit. He just told me today he barely notices any OCD, and we as a family don't notice any! Our son's Pans behaviors were severe OCD, major separation anxiety, and fear, he did not have any tics. Anyhow, I have been posting about our son recently,(more details about our experience in an earlier post) as he finished the program mid January. I really hope families consider CBT/ERP from a credible clinic. I feel it gets missed as a proven therapy in the Pans world, no doctor ever mentioned this as an option, and I only recalled a few parents on this forum talk about it which is why we decided to go. Anyhow, you can continue with medical interventions at the same time as doing CBT/ ERP. Please feel free to contact me. Also, my son has talked to other kids about the program, so if your kids are interested he is willing. Our son is 11 and we have been dragging him to doctors since this started when he was 6. He truly feels happy, healthy and empowered! I can't even begin to put into words how elated his sister, my husband and I are:). Regardless, of your path I am hoping for a turn around for your family! It is amazing what what you have done and are doing for your kids!!!
  22. Like
    dasu reacted to Mom23boys in PEX coverage & alternatives   
    Cigna actually does cover PEX for syndenham's chorea that is severe under their current policy. I ditto the alternate infections route. What have you tested for? Viruses? Mycoplasma? I see some viruses have been tested. Can you test for others? Would Dr. L do a trial of acyclovir (very benign in the scheme of past and proposed treatments)? I would leave no stone unturned in the active infection camp before I did PEX.
     
    Having said that, when denied, appeal. With failure of 3 IVIGs you have a strong case that they have failed other treatment. You can look up other health care provider's positions on IVIG by typing in IVIG policy "X insurance company". Be sure you have the most current one. Could you get a SC diagnosis based on symptoms or is that too far out there (we have tics and chorea)?
     
    As a last resort, there are people that do health insurance appeals. You may want to go it on your own but as much at stake as you appear to have (2 children, right?) it may be worth paying for some advice on the best way to attack this.
  23. Like
    dasu reacted to emst in Comprehensive strep swab   
    ears
  24. Like
    dasu got a reaction from HopeinHIM in Tired-Tired-Tired   
    Very sad, but well put. It would be a good read for the naysayers if they would only read.
     
    I have I have nothing to add except that we are in similar straights. The kids are still mired in flares, exhausted, stressed out and watching all of our money fly away. Our bodies feel like they are going to break, we hardly get any time to care for ourselves. Our marriage is stressed but OK, but then we don't do anything normal couples do. We are isolated. The people that should be there for us - doctors, insurers, family, friends, church - are absent. They just bring the added burden of trying to "get them on board". There are so many that offer authoritative plans without following through - but are always looking for money.
  25. Like
    dasu reacted to pr40 in chronic fatigue syndrome -- study --   
    here is the study
    http://www.medicalnewstoday.com/articles/302451.php?page=2
    it's not directly relevant for pandas but often, when you have one autoimmune condition, you have another as well in some form. what's most interesting here is that they finally know which blood tests to do.
×
×
  • Create New...