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tu4four

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tu4four last won the day on November 9 2013

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  1. Hello,

    Just saw that you saw a doctor in Colorado.  We're having a hard time finding anyone in Colorado who will take PANDAS seriously.

    Many thanks,

    Sarah

  2. Autoimmune Encephalitis

    PS. I often think viral illnesses trigger him. So I don't have a good plan for treating that. Have used virographis, oregano capsules, olive leaf extract and an oil....
  3. Autoimmune Encephalitis

    Thank you for your response. i read back over my letter, and I know it sounds....horrible . It is, but I guess I have periods where I can hold my head above water and dog-paddle and periods where I feel the shore-line is so close, but I just can't touch it. Yes, my dd15 and ds11 have both been diagnosed with pandas. They have both been given abx, and IVIG was recommended. But, you know....insurance. We have pursued yeast; we did a detox diet and nystatin/diflucan and saw some improvement. We need to do that again. Both my dd15 and ds11 have several viral issues that we have treated for. Which comes first--immune problems or viruses? Hhv6, coxsackie, mycoplasma, ebv. Took my dd15 to the optometrist yesterday and found high intraocular pressure in one eye--which could be indicative of encephalitis. After her high opening pressure on lumbar puncture, high thyroid antibodies, I feel like this is significant enough for a doctor who regularly treats autoimmune encephalitis to do something. So I feel like we are so close I can taste it. We have stopped giving my son his abx as he had shown no improvement this time in a month. As I am typing this, we are recovering from a huge explosion that began to cool 15-20 minutes after I gave him 2 Advil. Our back-up plan right now is...we removed the anti-depressant and the stimulant (add med) while keeping her abilify and Lamictal. We are starting aba therapy in two weeks and a social skills group. So, we're praying.
  4. Hello, mamas (and dads, and grandparents, etc!). I haven't posted anything for a long time, possibly because I haven't seen any new hope, any doctor that is willing to help, and our funds to travel to our doc have run out. Our most profoundly affected child (15) has continued to be super irritable and moody. She has been officially diagnosed with bipolar, asperger's (asd) conduct disorder at best, borderline personality disorder at worst. She has been out of the psychiatric hospital for 2 days, and as if that wasn't enough, my ds11 has now been in a flare for at least 2 months with 4 weeks on Zithro. This time I am not seeing him come back to us, even on zithro. Poor baby girl, dd7, is the youngest, who at this point only deals with phobias, "monsters" but no anger issues. So here is my question....we have an appt for my dd15 with a rheumatologist/neuro who is on the autoimmune alliance's website. He has worked with this a lot, apparently. I know these kiddos are dealing with brain inflammation. Dd15 had a lumbar puncture with a high opening pressure, but neuro didn't bother to test for any antibodies even though I asked him to. Dd15 and both others have had high thyroid antibodies, and we have a list as long as my arm of relatives with autoimmune issues, including one great aunt who had a very large goiter (makes me think Hashimoto's thyroiditis). This great aunt lived with her mother her entire life and was considered "not right" by family. My mom thought that she was just what they called "mentally retarded" back then, which could have been a lot of things. Anyway, I am looking for any other ideas on what to stress with the doctor so that we don't miss the mark with this one. This has got to be the answer. Since dd15 has been home from the hospital, she has been sleeping a lot. She was sleeping a lot before she went in, but we thought it was because of the antidepressant. She has been off of that for a while now and is still very fatigued. She went into the hospital because of a manic episode (I think brought on by the antidepressant). During that episode, she became obsessed with the phone and contacting several people that she didn't know. She took my phone before the password came on. When I tried to take it back (I couldn't let her continue to do what she was doing), she became very strong and relentless. When my husband walked in the door, she had me trapped by the hair, had kicked her brother in the groin and had kicked her little sister against the wall. Today, my son, who has lost his beautiful laugh, has had behavior very similar to dd15. He has screamed at me and yelled and verbally threatened just like her. Last night, when he was fairly calm, he lied about things that didn't even benefit him to lie about. This has been going on for some time. They both have had high tests for hhv6, etc. I know this is all due to inflammation. I just don't want to miss anything that will clue the dr in. Any other thoughts? thanks
  5. Acceptance-- Long

    Thank you so much for your response and wonderful ideas. Dd is actually taking lamictal now (200 mg am and pm) She also takes a low dose of ability and had been taking vyvansw (for attention and focus), but I have stopped giving her the vyvanse since I fear it may have been a cause of mania.
  6. This is a strange and awkward topic title because I am not sure that there will ever be acceptance of this in my heart. I love my daughter. She has a heart for little kids.and special needs people. But there must be functionality in life, in our home. Three years ago I was on this board a lot. We saw doctors (llmds) in Missouri and Colorado, immunologists in Plano and Colorado, neurologists in Houston, and, of course psychiatrists where we live as well as a functional med doctor where We live. We had terribly expensive phone consults with doctors in New Jersey and Illinois. She has taken all kinds of antibiotics and an entire pharmacy of anti-virals, cbd oil, anti-fungals, vitamins, detox aids, probiotics, etc. she has given what felt like gallons of blood to be testes as well as stool samples and urine samples. She had a lumbar puncture, eeg, MRI, etc. Sometimes we got results that made us think "aha!", yet nothing improved. We have done everything we can short of ivig because, even though it was recommended of course insurance wouldn't pay for it, and we just could not afford a procedure that may or may not work and that we might have to do over and over again. So here we are with my almost 15 year old lovely daughter. Her last psych evaluation (and we have to live in the psych world to achieve any level of functionality) gave her the diagnosis of depression, autistic spectrum disorder and conduct disorder. Her current therapist, psychiatrist and I do not believe that conduct order is correct, but she is certainly very oppositional. The evaluator said that she had diagnosed people in prison for violent crimes and that we should hide all sharp objects and meds. She has been very aggressive with us at times over the years, certainly verbally aggressive a lot of the time and often has seemed suicidal. She has been on meds for years, but we have yet to find one that makes things more than somewhat manageable. Previously, she has been diagnosed with pdd-nos, gad, OCD, mood dysregulation disorder, bipolar.She cuts herself and has left light scars all up and down her arm. She listens to music that i have told her not to that has explicit lyrics, whatever consequence I give, she does not follow. She has absolutely no internet access because every time she gets it, she contacts boys through sites like pandora and my lol, etc and starts VERY GRAPHIC sexting. and I this is from a kid who has only been homeschooled or (when much younger) in a very small Christian school. Three weeks ago she became angry over me asking her to wash the dishes. She really didn't even seem angry (because her angry is explosive). She seemed like she was looking for an excuse. She left the house, despite the fact that I told her not to. We have been through this too many times to count, so I left her alone thinking she would come back quickly, as she usually does, and we would deal with it then in terms of consequences ((which actually don't work with her--just serve to enrage her). I was upstairs cleaning up her room because we were having company come over for a surgery I was having. I happened to look in the corner of her drawer and found two notes to a real life boy who lives in our neighborhood and is a friend of her brother. I couldn'5 believe my eyes. She was saying she was shy and didn't really know how to say this but wanted to have sex with him. That he had asked her previously and that even if he didn't want anything to do with her after to just not tell her that. It had now been 45 minutes since she left home. I immediately left the house searching for her and quickly found the boy and a friend. They said she was following them. I kept looking and eventually saw the boy walk into the woods while the other seemed to stand guard for a minute and then went in. By the time I could get my car parked and situated, they were in another area and I found her in the woods. She said she wasn't coming home. When I asked her why she said she didn't know, she just wasn't. She came home several hours later, way after dark, and did the same thing the next night. Has not done it since. We talked to one of the boys this weekend, and he said that my daughter and that boy had had sex and showed us where they had been (out in the tall grass by a water treatment plant) During that week, a couple of days she had been especially chipper--even friendly toward me. She was talking a mile a minute--so much so that I mentioned it to a couple of people who had seen her and asked if they noticed it. This seems very much like a manic episode with hypersexuality. (She has had periods of trying to hide our phones, get old phones, etc and look at photos, sext for the past 3 years or so. In two of those episodes, she asked the boys what they would do if she got pregnant--I believe she wants this to happen. She has also told them what city we live in despite the fact that I have told her about Sex trafficking and how quickly someone with just a little tech savvy could find her) The other day she told me she was going to college at my alma mater (in another town), said, no, we couldn't come and did we think she could live in the dorm (all in one breath). She has been begging me to let her take driver's ed when she is 15 so she can drive at 16, but I can't trust her with a skateboard for transportation, so a car.... This is my lovely daughter who can do very little work independently (she has a 130 iq but cannot regulate herself enough to do much work and cannot cooperate enough to complete all her work). We have been working hard. And waiting. And hoping that something would help. But she is now almost 15, and I know that when she is 18, she is going to want to fly the coop like her older sister did. I am now at the place where I do not wonder. Barring some miracle (which I am totally begging God for and know He is capable of), I strongly believe that she will not be able to safely live independently--not to go off to school, live in her own place, etc. I do not see a time when I will feel comfortable allowing her to drive or pay her own bills or take her medicine or basically care for herself safely. Of course, she is not mature enough to see any of this and will likely run away. So I am now a mom on a different kind of mission. She is homeschooled--I cannot put her in the public schools for many reasons but primarily because she has no filter, goes through this hypersexuality and cannot be trusted to come home independently, etc. I have called a therapeutic day school and will tour them in the next couple of weeks. They are outrageously expensive; there is no way we can afford them, but again, I know that God can make anything possible. Maybe there will be some kind of grant of combination of grants that would allow us to send her to this school that has people work with the students toward a greater level of independence and even helps them with college. My second hope, and I am not having much success here, is to find another older student who can sit with her for two hours three times a week to help ease her into doing her independent work. (I also Homeschool her two younger sibs). And finally, I have tried to steer clear of this because of labels and because we want to take care of this on our own. But I am looking at the possibility of ss for a child with special needs. I am really at the beginning of that process but am realizing that as she gets older we are probably going to have to use an outide helper to help us move her toward a better level of responsibility, independence and safety in her life. She has to have a purpose...she can't wander around for the next 50 or 60 years out of sorts and with no reason to get up. Yet, at this point, I do not believe she will be able to get herself to and from a responsible job. I want to give her all the help that I can to get her to a level of independence that is fulfilling to her, and maybe we can move into a house that has a garage apartment. Although giving her that much freedom even seems like a stretch right now. Most of her life, she has had to sleep either in our room or at least downstairs because she seems to always get into something big when she stays upstairs. Thanks for reading this long, sad story, and I'd love to hear about any of your similar experiences and what worked/didn't work. Love to you all. Nobody works as hard and loves as hard as mamas like us....
  7. It has been a long time since I have posted anything here. My dd13 was diagnosed with PANDAS.../it appeared to start intensely around the age of 5. Her most significant issue has been intense rage, and then around age10 or 11, she started lying when the truth would fit better. I mean, lying about everything. Even though I know she has this serious medical issue, after years of trying to treat it (even including almost every mood stabilizer or anti-psychotic), we have had no success in healing the underlying issue. We have treated for Lyme as well. we have not done i ig because insuranse will not oay. We just had her evaluated again to see if we could get some help (because she presents with mood issues, odd symptoms and looks like asperger's). The psychologist gave a diagnosis of bipolar with serious depression and conduct disorder. Not odd, conduct disorder! She told us that she worried for our safety and that of dd13 and to make sure that all meds and sharps were locked up. She felt strongly that dd13 should be on an anti-depressant. She has been on an anti-depressant before--with horrible side effects--not the least of which are weight gain (and this added to her already low thought of herself). We started 5-htp, and immediately had three great days (no lying, cooperative, would allow or give hugs or even a touch). Then things slid back to horrible. Stopped the 5-htp. A week or so later, we did 100 mg of 5-htp and 7.5 mg abilify (a 30 mg broken in 4 pieces ) am and pm. We got 2 weeks of fabulous! For the first time in YEARS! Dd13 had been sleeping on a mattress in our room for over a year because we couldn't trust her to be in another room; she would not go to sleep, would get in the middle of the night and get I to all sorts of things. On this combo.she was able to sleep in her own room for the first time in well over a year. After two weeks, it wore off, and she was back to horrible. Then after a few days. We did 500 mg of inositol with 7.5 mg abilify and the 100 mg of 5-htp am and pm. Again, great until it wore off. Then I was out of 5-http and out of town. (She was wearing down again anyway). I gave her the abilify and 1000 mg inositol. She was fabulous. Found 5-htp 100 mg extended release and gave that to her the next day With the 1000 mg inositol and abilify. Continued fabulous for two weeks. By this time, I can see that this works but is going to have to be rotated with something. I tried Sam-e, but that was not effectiive. The last time, we we t off and continued the inositol and abilify with good results, but not as good as with 5-htp. The. That wore off after a week or so. Things were ugly again. We stopped tha abilify and everything but used b12 (methyl) for four days. Things were good. We always get a three day honeymoon coming off of abilify. At the end of that time, things were ugly again. The. Started -5-htp, 1000mg inositol. 7.5 abilify. All is right wih the world again! So.....I share this because it might help you! And I also share this because this is the best place I know to go for answers! And I wonder if anyone might know why these things keep wearing off/ how that works. (We' e had some testing that shows that her liver metabalizes meds fast). And what else might work in th interim. I play around with using magnesium, fish oil, core (zinc with b6, etc), choline, sam-e, NAC and GABA. Bui haven't found a good regimen for any of those.
  8. Texas Childrens Hospital

    I guess it depends on the open-minded mess of the dr. These are the terms that I actually used with our neurologists (I learned from our pediatrician that pANDAS wasn't going to go anywhere.
  9. Texas Childrens Hospital

    In our experiences within the past 6 months, TX Children's has not changed its stance. Our pediatrician told us she spoke with the top immunologist for TX Children's and was told that TX Children's does not believe in PANDAS. Our most recent neurologist is with TX Children's (as well as the previous one). He does not believe in PANDAS and seems to be one of the more open-minded docs there. He was compassionate, did a lot of testing, but just won't go there. Oddly enough, a TX Children's pediatrican was the first one to mention PANDAS to me. Of course, now she knows nothing about it. Sorry. I'm a little cynical when it comes to Texas Children's.
  10. We have not had any bloodwork done recently. Things sort of ground to a halt with the second neuro doing an EEG (normal) and tons of bloodwork. He said she looked like asperger's to him, which I have always fought. But we are kind of at the end of the road here. My husband is working two jobs to pay off our bills. we traveled to Colorado several times to see a doctor whom I love. We saw two out-of -town immunologists, two neurologists, two llmds, a couple of chiropractors, a functional medicine doctor, several psychiatrists, several thrapists, including occupational therapy twice had lumbar puncture, MRI, EEG, tons of bloodwork, evaluations by our school district and a separate developmental specialist.....not to mention all the money that we have spent on medicine and supplements. Like everybody else. Insurance wouldn't pay for IVIG, of course. I have used every essential oil that I can think of, not to mention an oil that I rarely mention. I would do it all again to help her. But I just don't see anything really making a difference. Maybe on top of PANDAS and lyme and babesia and bartonella and viruses and parasites.....she simply is an asperger's kid. She is so very smart. I just wanted her to have an easier time of it. I wanted to have a close relationship with her and not have every day bring more chaos, more insults, not be constantly reigning in over-the top disobedience. She has had some decent time, but not a ton. She is not raging anymore or running away, and that's good. We homeschool, and we have her in several positive activities. We see a new family therapist on Thursday (never done family therapy before). Do you think this is just it? And if so, how do we manage her when she is 18, has no filter, and chooses to go somewhere with someone from the Internet? We can't keep her off the Internet her whole life.
  11. We did treat bartonella, but maybe not long enough. I am going to go back and look at what we used and how she was behaving then. Does the complete disregard of any rules go with Bart, too?
  12. I have 't been on in a long time. I have four children, one severely affected PANDAS kid and two others who wax and wane to different, but frequently manageable, degrees and another who I often wonder about. My most severelt affected daughter just turned 13. We have see a great dr in Colorado..., .she seemed a little better for a little while, but not nearly complete. Her OCD appears to be gone and has been for a couple of years. But she is seriously oppositional and irritable. She spent four solid years on psych meds--no e of which maintained a good place for her. She had her to tonsillectomy three years ago which set off another bout of intense separation anxiety, but that eventually resolved. About two years ago, she started flat-out lying to us. She has not been very obedient for the past few years, but at this time, she just became super-defiant....as in----I'm not going to pick up my clothes and you can't make me! Or running from me, calling me an idiot, a loser, etc. We had given her an iPod for Christmas a couple of years ago at Christmas (with disabled Internet). However, last year she somehow got on her sister's iPod and went to several porn sites. I thi I it started innocently but then one thing popped up and then another. She followed the trail. At Christmas this year, she got hold of my computer that did not yet have our filter on it. She stayed up all night on chat sites, teen dating sites, etc. she lied about he fact that she had the computer. She spent the next day calling her sister a b****, being generally hateful and trying to get back on those sites whenever she could. I have no idea what all she did. But e did find that she had long chats on two or three occasions with two or three different guys. A couple of them were beyond highly suggestive. One of them was trying very hard to get him to send her nude pics or pics of body parts, and while I have no proof, I think whorl ably did. He asked her to do several sexual things to herself, which she told him that she did. She mentioned to him at least three times that they could run away together. She told him her siblings' ages and sent pictures of them. It was a big deal. I reacted wrongly and exploded. She knew it was a big, big deal. We told her again all about the sex trafficking industry. It was huge. Her psych insisted we put her on a higher dose and different med to keep her safe. Although I am not sure if more psych med makes them think differently, I agreed because I didn't have a better idea. So she has been on more meds, and sometimes she's okay, and sometimes she's horrible--doesn't seem consistent with more med. this weekend we had family friends over--my dqughter's BFF has her own iPhone and iPad. I knew this was a bad idea. The friend is only allowed to be on Pinterest. I should not have allowed my daughter to even sit with her friend and look at it, but I did. By the end if the weekend, I got a report from the friend's mom that my daughter had created a Pinterest account--which is a big no-no (creating an account). Later, I got a report that my daughter has a tumblr acct. my daughter lied about having it. She had created a Facebook account two years ago that I told her she could not have, but I did not delete it because I felt like at least if she got computer access, I knew how to get to this--otherwise she might create an alias. I checked her facebook account last nigth, and she had been on and had, through fb, searched for all kinds of things including sex and porn photos. AND she knew enough to search for those things iin a way that was visible to "only me". So....I know that she has some medical issues. BUT.....what do I do with this and things like it? I cannot trust her in a room next to me. I can not trust her whatsoever. She REFuSES to obey. This is with me by her side almost ALL the TIME since we homeschool. I guess I am asking if this seems to be a symptom which I can of change or bad behavior. I have my own opinion, but.... She is not raging like she used to. She does not respond to discipline. This has been going on for a long time but just continues to get worse as she gets older. She just turned 13 on Friday.
  13. Dd12 has had years of struggles, and while she has been in a pretty steady place lately, she is still pretty negative. Lying, taking things that belong to others in the house, calling us all (me, included) morons, losers and such. She cannot stand to be touched and still often can't stand to hear anyone breathing. I would say she is maybe 75%. Still very hard to live with and causing a lot of chaos within the family. She had a lumbar puncture a year ago and had a very high opening pressure, which can be indicative of encephalitis as well as other things. She had a mildly high tpo test which can apparently be indicative of hashimoto's encephalitis. She was hit on the head twice , which resulted in confusion both times. After being told by two pANDAS immunologists that ins would not pay for IVIG, I have been trying to find someone to try a steroid burst (we have treated for lyme with no real improvement or herxing). Our neuro wants test after test after test and is fearful of steroids. We ended up with a prednisalone dose pack, and I began treating Friday. By Saturday, she was fantastic. And continued to be all weekend. Not an episode. At church I put my hand on her back, stroked her arm, etc. no negative reaction whatsoever. It was amazing. As we started to taper down, her symptoms gradually increased again. She was really kind. Things were uneventful (and that is never the case). Of course, we are tapering down. Today, she has only had 40'mg (I pill). She has called me. a loser and all sorts of names, thrown a heavy skillet down on the tile floor, refused to listen to anything I say, telling me "too bad!". She locked us all out of the house and stood where we could see her with her hands on her hips and a smile on her face. Yeah, the steroid helped significantly. So my question....what should I be asking for at this point? There is a dr not far from here who is a pandas doc and does use steroids. I don't think 1 dose pack is going to cut it. What should I be asking for?
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