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Everything posted by Indigo

  1. Has anyone used this specifically for PANDAS? Wondering about experiences...thank you!
  2. We are trying Hydroxyzine tonight-Just got it from the pharmacy. Will update if we have good results. It's an alternative to the 2 benadryl she usually has to take to get any sleep.
  3. My daughter had this before being treated for PANDAS. The PANDAS treatment completely cured her of this.
  4. My dd was recently put on augmentin after her PANDAS flare up after having the flu. It is without a doubt the best antibiotic that she has been put on so far. It is probably equal to what we saw with prednisone. What a relief!
  5. Geodon and Fluconazole cannot be taken together. My dd is doing so good!!!!
  6. At the time that we went off of it, it wasn't affecting the rages per se, but the irritability level. I remember after two days off the naltrexone, wow, why is she not so edgy...but then the strep issues with me started and the rages went off the charts.
  7. Thanks, everyone....I was a little worried about the response I would get, so thank you all for being graceful about it. Dd is taking Keflex with the Geodon. Risperdal caused weight gain in the past-doctor thinks geodon is more weight neutral. The issue here is that I am on my eighth antibiotic for strep and it's not going anywhere!! The rages are like Nancy described--we haven't been able to leave the house, doors, walls, being ruined, we are all scared of her basically. We've had two good days on the geodon--I can't even tell you what a relief it is-the amount of energy that was going into these rages is just phenomenal. Azith is something you can't take with geodon-it reacts with it somehow, same with fluconazole.
  8. I am just wondering if anyone has used this medication for their PANDAS kiddo. Thanks!
  9. After a couple of weeks, dd got really irritable on the naltrexone to the point where I had to stop it, unfortunately. I've had recurrent strep and things have gotten so bad here with raging that we have to go back to meds....we just started her on Geodon last night. Not sure if it will help or not, but the raging is just beyond my control because she is too big for me to handle anymore.
  10. I noticed this in my dd with me having strep this month...it seemed to get worse her first couple of days of prednisone and seems to be correlated to extreme hyperactivity here.
  11. Yes, this is dd's third time on the prednisone. When she flares really badly, my doctor likes to put her on it to calm the inflammation, and that has been 3 times this past year (August, Dec., and now May). She really gets violent and as she gets older it is getting so much harder to control it. Dh and I were half laughing/half weeping at dinner tonight as dd sat nicely, talked nicely, gave appropriate responses, etc....it's been a long month of raging and crying just about every hour for a full month-we are both absolutely exhausted!! It started when dd got the chicken pox and then I got strep a week after that, but since the first test was neg. I wasn't put on an antibiotic until last night. I also think that the strep just being in the environment increases her antibodies which attack the basal ganglia. I think that it was years before she was treated for PANDAS and perhaps that is why her flare ups are so violent--not sure. The repetitive OCD stuff is enough to drive me batty---what do you mean by measurement rituals, EAMom? My dd is obsessed with the temperature. She is checking the temperature many many times a day and then repeating sentences about it over and over. I'm on amoxycillin for 10 days--reasoning was that I am also having urinary symptoms that the amox could help. I do feel a bit better today, so we'll see.
  12. We have this as well...it was interesting this past week when the strep was in our house that dd began talking really loudly about people in stores, how she hated their shoes or tatoos, etc. She normally doesn't do it so angrily and in front of people and I think it was part of her strep reaction. Accepting differences can be hard for kids who cling to routine and are stuck in whatever their OCD is, I think.
  13. I also have urinary symptoms along with strep when I get it, which has been 7 times in the past year. I never actually correlated the two until this past time. We have gotten help from our DAN doctor (defeat autism now). We have an excellent DO who takes insurance...check the DAN list online.
  14. Yes...we also received an Asperger's diagnosis at age 4.5 but she has always stumped doctors...sort of spectrum but no speech delay, great eye contact...and then on her first steroid burst a typical child emerged with no Asperger behavior. This past week when I had strep her autistic symptoms have gone through the roof! So, I don't think she has Asperger's plus PANDAS or ADHD plus PANDAS...I think it is all PANDAS.
  15. Sigh...I got a positive strep test today...no wonder things have been crazy around here!! My first test was negative two weeks ago but this time it was positive...I think the lady the first time did not go very far into my throat and that is why it was negative. Amazing to see the PANDAS symptoms go through the roof for dd--even on Azith: ~huge eyes ~repeating the same sentence over and over (I don't remember seeing this before so strongly as I did this time) ~raging ~no control It's been this way for about a month now, slowly building and building and building until she has lost all "executive function" as Dr. Bock describes it. I wonder how long we have with me on the antibiotic until she calms down?? We actually made the decision to do prednisone this week before I even tested positive because she has been so out of control the doctor wanted to see if it would calm her again like it did last summer...so far it's not working (day two on it). We're going on our first big vacation this weekend and I'm afraid it's going to be a disaster.
  16. Hi, Chemar, Could you tell me how much boswellia you use for your son? My dd reacts well to this but the results only seem to last a couple of hours (with two supplements) and I am wondering how much I could give to her.
  17. I have not found the antibiotics to take away the repititive things/Asperger-ish behavior/anxiety. It did clear up the separation anxiety completely. The steroid burst did--dd was a completely typical child for two weeks on the steroid burst. This has been extremely bittersweet!! We know it's most definitely PANDAS and that keeps us going with this but at the same time it's so hard to see what could be our life!! Right now we are on week two of Naltrexone for the PANDAS. Sleep is improved on this. She is also slightly calmer/more aware. Advil also helps a lot and I give her Advil before any social situation.
  18. Could this also be why PANDAS kiddos repeat sentences/numbers, etc.? They are keeping it in their short term memory by repeating it over and over, like we would do before we had time to write a phone number down.
  19. We are also homeschooling and it's worked very well. I think it is most important that my PANDAS kiddo really love learning without the pressure to do so in any set form or manner. We take lots of breaks and bring lots of sensory input into all of our learning activities. It can be hard on me, but I take time during the weekend to go out alone if I need to in order to get a break. I think it helps to really see the parts of the brain that PANDAS affects and know that they really can't control those parts that are inflammed. I just read the other day that often children who are "behind" actually might just need an extra grade, particularly boys. It works fine for us because we use the Waldorf method where first grade starts at age seven....this method goes more by emotional/physical AND intellectual readiness than just intellectual readiness. Dd is truly thriving with this learning method and loves everything she is doing and learning.
  20. Hello, Yes, he is wonderful. There are several doctors at the practice and they all are familiar with PANDAS and the protocol. Here is their website: http://www.woodmed.com It's actually in Quakertown, PA, closer to NJ than Lancaster. They do take insurance. All of our appts., tests, and medicines have been covered.
  21. Yes, I think you need a prescription for it. We go to the same doctor that dx the PANDAS...he's a D.O. and also part of DAN.
  22. That is so wonderful! It is so great when we find doctors who are working for our children and who are supporting this journey!!
  23. Yes, I'm confused as well...the antibiotics are not only to get rid of strep but to prevent flare ups when there is strep exposure. After a week off of Azith, dd was right back where we started again, when I tried to "pulse" the antibiotics. Is your doctor really familiar with PANDAS?
  24. pmoreno--I read on the yahoo group that the irritability might happen at first in the kiddos who have food issues...dd is gluten free, not sure if that makes a difference or not.
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