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Everything posted by danddd

  1. what a grandma! i dont know her but i think i love her
  2. It seems I have a million questions from every post I read, here are a few............. 1. Does a horrible reaction to steroids (too scary, pretty much homicidal) mean there is a good chance ivig will do the same? 2. With the whole ivig "turning back the pages", is it possible to not go far "back" enough, and see no improvement? 3. Does ivig help with myco p or does it just require antibiotics? (we need to re-test for myco p, the lab did the wrong test!!) oh by the way, do you guys use lanocaine or something before bloodwork? I think it helps with the initial pain, but I h
  3. This stuff is good to hear, I have been told by dd9 docs. that they think there is co-morbidity (sp?) the ocd/ anxiety piece, and then another severe mood disorder. it is crushing to hear that and to have your thoughts go from pandas to a lifelong struggle.
  4. I have the same question,, what to do next? sorry I dont have an answer. My 9 yr old has rages, mostly against me and her 4 yr old sister. It IS terrible to see the affect on the whole family. we are looking into ivig, waiting for the results of more bloodwork too (myco, immuno etc). so sorry to hear she has positive lyme, myco p, ect. someone must be able to sort it all out. as people keep telling me "never give up"! there will be lots of good suggestions from others............
  5. my daughter will have a tic for a couple months and then it will change. in may she was shaking her head also, she would go to the nurse at school because it gave her a headache. hers was mostly when she was excited or anxious and at bed time, not ALL day. we tried to not talk about it, just pretended it wasnt there, and eventually it went away........ sorry i have no "fix" that worked for us. hope it gets better soon.
  6. She tried steroids and they were horribly scary, her rages got far worse.........does that mean she will respond similarly to ivig?
  7. Oh Dawn, you made my day! So relieved to hear things are moving in the right direction. Thanks everyone!!!! This is the granmother of DD My daughter is so distraught that I am going to move into this situation that I have been watching and crying with for 1 1/2 years. I get that Dr. Geller yes that Dr Geller that she is seeing is only on the med pyscho route and Dr T is helping her with other problems besides PANDAS, but his input no to IVIG. This grl is in pain emotionally, and I say off the crazy meds and time to try with Dr. K. We will take the chance and if it fails I will t
  8. Oh Dawn, you made my day! So relieved to hear things are moving in the right direction. Thanks everyone!!!!
  9. Thanks guys, Unfortunately, they (her docs) dont have a plan except to keep trying different psych meds. Hospitalization, meaning the child assessment unit (proper term I guess for child psych ward) is what they have asked me to do before. They say that because the strep was initially treated, (and has been gone for a lond time) that you are supposed to treat the symptoms. (i.e. psych meds for odc, anxiety etc.). I had a consult w/ dr.k, and he pertty much reccomended ivig, she just needs to gets some bloodwork done first. it is hard, do I listen to the docs that have followed her this who
  10. I am seriously considering ivig now for my dd. But I am scared to death, like a deer in headlights at having to make the decision. She has only been diagnosed with pandas, no other learning, neurological problems, etc., (just an anxious kid). Right now my main concern is her rages, she is strong enough now, while in full rage to bruise me. Is there anyone in a similar situation: 1. child only has pandas as diagnosis 2. is around her age, (9) 3. has not had strep for a year, but is still suffering bad mostly with rages (tics, ocd, and fears still there too). if any of your childr
  11. wow even bc&bs denied! keep fighting, hope you get it. so maybe i should just look in to seeing dr.b if we dont have to pay up front. dd is not immune deficient , so that wouldnt work as a reason. $8000 for 95 lbs. is cheaper than chicago...... is everyone generally happy with the results?
  12. i have a consult set up too (by phone). what can you do if only the consult is what you can manage? i guess, i might end up with a great diagnosis and treatment plan, but not enough funds to do it. i am so dissapointed to read all this. have any ins. companies reimbursed for ivig? why are there so many road blocks with pandas?
  13. I am set to have a phone consult w/ drk in a couple weeks, very nervous but hopeful about it. but I was just reading in the other post that if he were to recommend ivig, you have to pay up front for it and then if your lucky be reimbursed? even if it is done at hospital, they dont submit to ins. ? so........... are there any docs who are sometimes willing to give ivig when needed, and take ins.? I am lost again! oh, does anyone know of a boston doc who has worked with drk (or another good doc) to have ivig done locally?
  14. we are in the boston area, I'm searching the site for more options, maybe we'll need to travel. thanks everyone
  15. thanks everyone,,,,, to initially treat the strep we did 1wk augmentin. Then saw neuro (hated him) did prenisone (horrible) and 1mo of amox. Then saw new doc ( geller) he gave us diagnosis, started celexa, later added risperdal. better for a couple months then fell apart, ended up inpatient. I talked them into letting us go home, it was horible. then tried lamotrigine, seroquel, and augmentin. every time she goes off augmentin she goes downhill steadily. but she got serious stomach problems dispite probiotics adult strength. trying to get app. with fuhlebrigge. maybe he will help.
  16. I have no idea what to do next. The docs we see, who seem experienced in pandas, have said they dont recommend long term abx, or ivig for my daughter. What other treatment options are there? I am lost, and she is still far from her old self, even though it has been a year since strep. Do I just hope for natural recovery? Does anyone have any ideas?
  17. thanks guys, I will check out that link, and maybe send it to them. I got an iep no problem because they cant argue with a doctors diagnosis. Its the nurse and the counseor that are the problem. I kept friendly, but they crossed the line. They keep refusing to let her go home, and make her comromise. They see it as though she has anxiety, and she is trying to run away from it, and they think they are doing the right thing. well, a couple days ago i lost it, when I finally got to pick her up, she looked horrible!!! I sent an email to them firmly telling them i dont want it to happen again. no o
  18. I was just reading that a bunch of you are around the one year mark of your children getting sick. Same for me. It is a horrible time when you realize it has been a whole year of your kids life, and everything they have been through. It is helpful to know that others are going through the same thing. I was also wondering how some of you deal with school issues? you know the school nurse, bad days, needing to come home....... I am very frustrated, they just dont GET IT!
  19. how does the biaxin work for pandas? I am on my second round for chronic lyme. it gives me a horrible metallic taste in my mouth, uggggh, but it works.
  20. thanks, I guess the es must be the same as xr. we arent really doing it for prevention of strep, more for the theraputic effects. her last strep was almost a year ago, but the augmentin is really helping i think. do you give the adult dose of probiotics or higher? thanks i feel better now about switching.
  21. my daughter is currently on regular augmentin, she has been getting stomachaches and now loose poops, dispite taking pobiotics ( 12 bil. 6 strains). her pediatrician recommended more probiotics, zantac and switch to augmentin es., (and c. diff test). her pandas doc said ok to the switch, but that could be less effective, i am assuming because there is less clavulanate acid. i dont know what to do? has anyone else used augmentin es, and was it helpful. thanks so much for any info.
  22. dr.k does phone consult? good to know hope it goes well.
  23. my daughter was on augmentin and i gave her probioticts from day one, after 4 weeks she started getting stomach aches, so i got stronger probiotics. with the new probiotics her stomach got worse. i have heard too much probiotics can make you gassy, so maybe it can do more than that. good luck
  24. i took my daughter for neuro-feedback and emdr before she was diagnosed with pandas. we went to try to help the ocd fears and anxiety. i will say she was incredibly tired after, like the lady said she would be, but there was no real improvment so we stopped. it was only 1 month after the strep maybe the symptoms were too strong.
  25. I agree, risperdal was "crap" for us too. At .3mg we went off. I swear it made the meltdowns more frequent, and more intense.
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