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Bridget

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Everything posted by Bridget

  1. I love hearing outcomes like that . I have heard a few other people with easy recoveries like that one. it seems to vary quite a lot.
  2. Thanks so much for the reply and useful information. We were going to ask about the overnight stay due to the sleep apnea. You are right the IV fluids would definitely be a huge added bonus. I am dreading my poor guys pain after the surgery but know he can't keep having so many sleep interruptions and such low oxygen saturation overnight. Thank you for the encouragement to get through it.
  3. That is wonderful news! Our 6 year old son is scheduled for T & A removal in November. He has both obstructive and central apnea. Did they take any extra precautions in regards to sedation/anesthesia because of the apnea? I have been reading way too much about possible complications in those regards. Darn that Google. We will be contacting our ENT with questions next week. I hope the upward momentum continues for your little one.
  4. Teri- Yes, our son does have a PANDAS diagnosis originally through Dr. K. and Dr. T last October. We now see Dr. Alarcio in Phoenix since we live in New Mexico. Our pediatrician here has been quite supportive and willing to consult readily with our PANDAS doc. Of course yesterday we had to see someone else who used the phrase "If we treat this". Although I am usually a VERY calm person, this got me pretty riled which is when she suggested repeating the clindamycin. Our son has had success in the past with ABX treatment. He even had a month free of symptoms after a round of clindamycin last year and another good spell while on an augmentin/azith combination. Unfortunately since then he has been struggling with strep. Dr. T and Dr Alarcio ran a ton of blood work on him and found previous mycoP, high EBV and previous strep. We just can seem to get him out of this current flair/past this current infection. Perhaps it is a matter of going on a longer course of abx. We have an appointment with an ENT but the earliest available was at the end of June. Bridget
  5. I wrote recently about my 5 year old son’s eye movement tics ( positive strep). He was placed on 10d clindamycin and around day 10 his tics improved considerably. Of course they worsened again over the next few days. 4d after completing the clindamycin he tested positive for strep still. His physician gave him a bicilin injection. He again got better for a few days. I should note that when he is not on other treatment antibiotics he is on 200mg azithromycin daily + advil + probiotics and that in the past he has been able to clear a strep infection with clindamycin. We removed all other medications in case they were making tics worse. His eye movements were really bad yesterday and his behaviors were pretty awful. They had to hold him down and pry open his mouth for the strep test. He wouldn't let the doctor or nurse go near him without physically attacking them for anything. He was attacking me continuously. He tested positive again for strep (1wk post bicilin). The pediatrician put him back on 10d clindamycin (after consulting with Dr. Alarcio). Seeing how that didn't work last time, I am not too hopeful. I am just wondering what happens if they can’t clear the infection with these “standard protocols”? I am so worried about my little guy right now. Any suggestions? Thanks all! I know I don’t write often but you are all indispensable to me:) Bridget
  6. My 5 year old son has been diagnosed with PANDAS since last October. He presents typically with motor tics, vocal tics, anxiety and rage. His tests have shown both strep (off and on) ,a previous mycoP infection and extremely high EBV antibodies. Last week we started him on a new protocol from Dr. Alarcio: Rifamdin, Cefdinir, Leucovorin, Advil, Vit D, Mutlivitamin, Fish Oil, Culterelle and Florastor. A few days in his eye rolled back while at school and he became unresponsive for about 30 minutes. We took him to the hospital and he tested positive for strep with no other indication for why it happened. They switched him to clindamycin to fight the strep. That was 7 days ago. For the past two days he has had continuous eye movement. Mostly side to side but also in an arc. It is all the time. He is amazingly not complaining about it but he is struggling because of it. He fell over at school yesterday probably from being dizzy. He has an EEG scheduled for tomorrow and a sleep study in about a month. Have any of your children had this sort of continuous eye movement either due to the PANDAS or perhaps a reaction to one of/combination of the medications he has been on. We removed everything except the clindamycin and advil yesterday just in case. I am just at a loss for how to help him. He has had eye tics in the past but not like this. We are waiting to hear back from our pediatrician who is consulting with his neurologist. Hopefully will hear something back today. Thanks!
  7. Hi all. Our 5 year old son was recently diagnosed with PANDAS. We had an amazingly symptom free month following treatment of strep. He is now backsliding with both tics and behaviors. We are waiting on labwork ordered by Dr. T but we would also love to have a more local PANDAS-knowledgeable physician to interact with. Are there any recommendations for doctors near Albuquerque, NM? And by "near" I would be thrilled if they were even in a neighboring state. Thanks! Bridget
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