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Everything posted by bronxmom2

  1. hey norcal-- I didn't mean I am afraid I am stirring the pot on this board... I meant I'm afraid I am stirring his pot of antibodies, not giving the process enough time. About tests between treatments: nope. This is one of the things that keeps ME awake-- no one seems to be really tracking these kids and their outcomes, except us. I for one am mentally tracking things on here, somewhat compulsively... I tend to remember kids CamK numbers, titer numbers, their profiles on the Cunningham tests, the treatments they've had and what seems to be working. It is weird that we as parents are making so many treatment decisions. Perhaps we are lucky...still under the radar and empowered...I am reading "Cure unknown" about Lyme, and it's truly alarming what happened to the treatment protocol when the CDC and NIH got involved and insisted that Lyme was ALWAYS cured by a single course of antibiotics. Were you on this board when Dr. Trifilleti (sp?) was posting? A few times he pointed out that something truly revolutionary was happening here-- knowledge evolving between parents-- I think he was right about that. Dr. T seems to be extremely intellectually curious about PANDAS... perhaps it would be worth you time to try to arrange to talk to him?
  2. I agree this is a huge problem (one ivig or 3-4?). I think it is related to insurance coverage more than anything. If a family is paying out of pocket, they are inclined to believe that one will work. If insurance is covering, they are inclined to believe that benefits are cumulative. Norcal-- we are also exactly 8 weeks out from his last IVIG (his 4th at 1.5). Each time I have seen the same pattern: a marked worsening that lasts about a week; then a stabilizing; then some more worsening/fluctuating; then another improvement that feels more stable somehow-- and THEN I destroy it all with another IVIG, restarting the pattern. (I was scheduled to do another one next week but have pushed it until the end of the month because I am not absolutely certain I should do it.) IVIG also seems to make him hyper, but he was always hyper. Really manic is a better word. I do believe you will continue to see your son gradually improve from here... (IF he is not waylaid by illness) as would I if I stopped submitting him to IVIGS. I am looking forward to stopping; I hope to then sit back and watch him get better and better and better. I am just trying to make SURE, and since insurance is covering, it seems the best play for my hand. But perhaps I am "stirring the pot" and doing more harm than good.
  3. I wonder... if your child was not suffering from PANDAS and said something like this... you might think you had some kind of philosophical prodigy on your hands. I would be tempted to honor these feelings-- perhaps they represent some positive side of PANDAS. As a young child (with PANDAS) I used to be able to lie down in a quiet room and chant "now is now" to myself and make myself float out of my body. I would float all around the room. It was exactly the same exhilarated feeling you get when you fly in dreams and it feels so real. When I read in Saving Sammy that he chanted the exact same thing, "now is now"-- it sent chills down my spine. But I do remember that the "now is now" thing was one of the best things about my childhood. I know we should be scared of manifestation like this, but I suspect that your son is in possession of real insights and perceptions.
  4. Thanks guys. yeah, I had a full immunological workup done, maybe six months ago, and it matched my son's remarkably... the same IGg's (just under normal) and the same failure of 13/14 pnuemoccocal titer's... also something abnormal with the T cells. At the time, this did confirm my personal suspicions but the Dr. did not seek to think it was significant... then when I reported a sinus infection I couldn't clear and very sudden psychiatric symptoms... he said perhaps we need to treat you too. The mold exposure was at my sister's.. she'd had flooding earlier in the year and proudly announced that they'd closed all the windows and put on the air conditioning before we arrived. I knew as soon as I stepped inside that something toxic was in the air, but I did not want to hurt her feelings and sat down to dinner. I don't know that this in itself would trigger PANDAS but it certainly causes an infection, which does trigger PANDAS. When I say I feel guilty I wish I could give my approval to a kid who's family can't get treatment... treating the kids is so much more important. BUT if I go into with the spirit that perhaps I will help my own son's recovery...
  5. I hesitate to post about this, but I am just so surprised, I wonder what people think. A few days ago I went to the Dr. because of a sinus infection that has not cleared after two rounds of antibiotics (It was caused by exposure to mold a month and a half ago-- so I was also looking for information about my allergies)-- anyway I mentioned how I'd felt fine but on the antibiotics but the sinus infection came back within hours of stopping... and then how two days later I'd experienced alarming psychiatric symptoms. Now his office has called and I am already approved for IVIG. I am now tentatively scheduled to do it the same day as my son! I know they are doing a lower dose... the amount she mentioned was less then 1gr/kg. I think she said they were going to do it every 3 weeks. I was so surprised I didn't even ask any questions. I didn't want to sound ambivalent. I am happy but a little confused. I can't help but feel guilty for hogging precious medical resources. Also my husband is being really annoying. He thinks the whole thing with my son is very suspicious (snake oil) and now I'm going to do the same thing (abx and IVIG)... let's just say he is not being supportive. And he's irritated that he'll have to use a vacation day! (I can just imagine how he'll react when I tell him it's every 3 weeks.) Does anyone know anything about what IVIG can do for an adult with chronic infections/immune system problems... so that I can know what to expect-- and also, convince my husband? For example is there any reason to think that fixing my own immune system problems could help my PANDAS son and wipe out the chronic infections that have haunted out household for years?
  6. During the year when my son was getting sick constantly and going crazy and we didn't understand what was happening... several times he had strep infections, and several times he had staph.
  7. I have always wondered if they have done enough CamK testing in the general population to establish a real baseline... Wouldn't they have to test large numbers of the general population what is a truly normal CamK level? I think we tend to understand our kids' CamK numbers of 160, 180, 200 using our understanding of a standard Bell curve, but I am not 100% sure that this applies. Does anyone know if the "average" number truly is 100, and what measures have been taken to get a control group? It's like when I brought up my son's failure of 13/14 pneummocccal titers to someone, I think Dr. L... she said she can't really derive any meaning from them because those titers are not routinely checked in the general population.
  8. I am absolutely certain that it was. Or, some deep-rooted infected kept the acne going. On the few occasions when I overcame my shame and went to a dermatologist for an abx prescription, I always felt immensely better. I thought it was just psychological relief at my appearance, but I know now it was much deeper.
  9. Wow, amazing. I also was constantly sick, starting with pneumonia as an infant, CONSTANT throat infections, then a terrible case of mono and finally the mumps at age 17, which no one through was strange even though I'd been vaccinated... By the age of 14 I developed a problem where I had a constant, third person narration in my head describing my own thoughts and actions and I was plagued by irrational feelings of guilt. I was constantly sick, and my older sister always accused me of faking (for my mother's attention), which due to the guilty feelings I believed. I started to secretly write a novel in a notebook which, if I found ever found it, would no doubt be as heartbreaking as your journal. Anyway I somehow managed to turn my constant emotional pain into the belief that I was born to write, got a full scholarship to college and moved to NYC. I believed that NYC would save me from despair, but of course, instead, I REALLY fell apart. In less than a year, I was in Bellevue because I was fixated on suicide. I also had a number of compulsions at this time of which I was deeply ashamed, such as peeling almost all the skin off my feet and picking at my face. I had terrible acne. I was living in a state of deep and constant shame, tormented by guilt, unable to shake fantasies of suicide, and convinced I was faking the whole thing. I am so, so sad for this person. It is so strange to mourn for yourself in this way. I was by all accounts an unusually bright, imaginative child, full of promise. And while I am grateful to finally understand what happened to me, and proud of the fact that I managed to pull some art from all my anguish, I hope that none of our children have to go through this. ps-- no psychiatric medication or therapy ever helped me in the slightest. There is only one thing that ever helped me: marijuana. (I know there are some people on this board who have considered using medical marijuana for their children's OCD...)
  10. sorry, I didn't read mom2pandas reply that said the same thing. But it would make me really really really angry to pay $8000 for a procedure for which the insurance co. would pay less than 2000. Is this sort of disparity addressed in the health care reform bill or will it just get worse?
  11. Oh, one other thing.... I have looked at the statements of what the insurance company has paid for the IVIG, and it appears they pay only a tiny fraction of what someone would be asked to pay out of pocket. I know this is common-- private payers get really shafted-- but I have often wondered if it's possible to negotiate with either the doctor or with the insurance company so that you could at least get their rate. It seems so unfair that private payers have to shell out so much more than insurance companies!!!
  12. Does your son have an immune deficiency? Have you consulted with Dr. B? He has a knack for finding an immune deficiency and therefore a different way to order IVIG.
  13. Our was done October 09. Ditto on the tape thing and the catheter removal... insensitive doctor who thought my son was overreacting... but the nurses were AMAZING. It was also hard (for me) to be in the pediatric ICU and see some very sick little ones. My son is pretty sensitive and I didn't let him out of the room for that reason. One someone's good advice I bought my son roomy boxers to wear during the three days. good luck--
  14. Hi. Well, I would say he is doing OK. I THINK that after each IVIG there is a period of decline and/or craziness and then a baseline that is a little higher than before the IVIG... a period of relative calm and then at about the 7 week point a wearing off of the benefits...maybe. But I tell you I have moments of doubting the whole thing... It seems so subtle. Is it all in my head? Is he better than he was a year ago? Would he have gotten better anyway? What am I doing? why do I so persist in looking for a medical solution to a psychological problem? Yet each time there is a weird new behavior that comes and then fades. This suggests something is happening. After #3 I had the hand clenching, which lasted for over 2 months (through IVIG #4) but is now gone. After #4 there was the most alarming thing I'd ever seen-- he was soiling himself every day for exactly 10 days after IVIG, then when I thought I was really going to lose it, it suddenly stopped. After #4 I thought... I should not do this to him any more... now the scheduled IVIG #5 is approaching (mid Oct.) and I just can't decide. I've gone insurance coverage for it in place, so why not try to lick this thing while I have the chance? I just don't know. And through it all these frustrating cognitive problems, total lack of organization, and a pathological messiness (his 2 yo brother is more organized). I would say based on what you are describing you should do another IVIG but... are you paying out of pocket?
  15. Hi, I have seen both doctors... and they have different relative strengths. Feel free to PM me if you want to discuss.
  16. I think it was a blip. My son has been having IVIGs regularly-- every two months-- he has had 4. He does react to viruses and then recovers. Last week for example he fell and hit his mouth, and wound up with a mouth full of nasty canker sores (viral, right?) (and why all the canker sores?) and while those were raging he was a wreck-- my inner alarm bells were ringing-- eyes were all bleary. Now the cankers are healed and he has regained his equilibrium and clear eyes. To me this says... I have no real scientific basis for believing this... that his immune system is still haywire, though I am hoping it is less so than before. I have my concerns about all the IVIGs (constantly stirring things up?) but Dr B certainly believes the kids need more than one.
  17. Hey dcmom! my 8 yo son is also 2E and it's the same exact "menial" areas that are affected (addition, multiplication, spelling) while he gets pleasure from the more difficult things-- graphing, geometry, fractions, etc. His reading comprehension and reasoning skills are really way way way beyond normal but the act of writing (anything) is so psychologically painful to him that it makes him cry. It is really frustrating for both of us. My son had PEX and then regular IVIG, and he is doing great emotionally, I keep waiting for this to improve but so far... nothing. It would have been even worse to have seen him excel in those areas, and then watch his skills erode. How frightening! I'm so sorry you've had to go through this. I have to say that I read most posts on here, trying to track people's stories, and I think I have yet to read about a kid who recovered his academic skills and/or attention span. As you may recall I am homeschooling my son. I just can't imagine him in a regular school at all. At this point I've decided to let him skip the multiplication tables altogether and let him go straight to geometry. I'm lucky if I can get him to write one messy sentence but he has the reasoning powers of an adult. Your school should be understanding. The typing IEP is a good one. Good luck.
  18. Hi-- I read this the other day. Like many of us, perhaps I see PANDAS everywhere... but I couldn't help but notice the frequent mention of "sore throats" here and the total disconnect between physical and mental health practice reflected here. http://www.nytimes.com/2010/09/14/health/14klass.html
  19. Has anyone ever wondered about this? I believe fluorine can damage the immune and nervous systems. My son has been in northern Europe with his dad for a month, and his dad reports no problems-- in particular a hand-clenching tic he had for several months before leaving has disappeared. This seems to happen every time he goes there. Of course, since I'm not there to see it, it's hard for me to know what "no problems" means... but I've definitely come to believe that our food supply in the US is hopelessly tainted. Now I am wondering if I should give him bottled water.
  20. I breastfed my PANDAS boy until he was 3 1/2... he got his first case of strep less than two weeks later. The breast milk protected him for sure. I have read that raw milk can replicate the benefits of breastmilk... pasteurization removes all the health benefits of milk. Raw milk is hard to get but I am looking for a coop or an illegal delivery service. I have a second child, 2years 3 months, still breastfeeding and no intention to stop any time soon. No sign of PANDAS yet.
  21. Have you found out if Georgetown will do the plasmapherisis outpatient?
  22. My son had plasmapherisis at Georgetown last year too, and he had no problems with the main line and definitely could have been across the street at the hotel and come over just for the treatment part, which lasted 2-3 hours per day. It really bothered me to be in the ICU, which seemed like overkill, but that is there policy for any kid who has that main line-- I can't imagine they would agree to do this treatment outpatient-- though, if they would, maybe it would be available to more kids. Our nurse confided to us that the hospital takes a HUGE financial hit for each kid that gets PEX, because insurance reimburses only a tiny fraction of what it costs the hospital. The removal of the line was the hardest part for us too.
  23. Melanie, I don't want to confuse you further, but I do believe that the 1g dose makes these kids worse. Dr. B himself was doing the 1g dose monthly but recently switched to the 1.5g dose bimonthly after conferring with Dr. K, so I have seen both. He is very good at getting insurance to cover if there is any kind of immune deficiency. Perhaps if you call him again you can get the ivig schedule sooner rather than waiting for the new transfusion center. The woman who does the IVIG there is WONDERFUL. Anyway I would not do the 1g dose. I am just curious, why is he in school in the summer?
  24. The thing with the lights sounds like it's based in anxiety and the excessive fearfulness/ separation anxiety many of us see.
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