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MarcyJ

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Everything posted by MarcyJ

  1. HI. We saw a PANDA specialist ENT and he is going to remove both the tonsils and adenoids the beginning of Feb. He said the actually don't do sinus surgery for acute sinusitis. He said the way it works is Tonsils come out as the tonsils are the source of all strep infections we need to get ride of the source of the strep infection and the Adenoids are actually the source the of where the sinus infection comes from. While he is in there he will make sure he takes a look at the sinuses to see if there is anything suspect looking that he can do but there really isn't at this pint excep
  2. We may have the tonsils out to even though( strep) titers are down to 236 from 800 in March 2016. We might as well remove tonsils ( Strep and the sinus surgery at same time) Both cases of infection . How was the tonsils surgery ?
  3. Hi Kim - Hope you are having a great new years. Someone very nicely suggested I reach out to you when I posted this post last night. Any suggestions feedback: 

    Has anyone had their PANS/PANDAS child with Acute sinusitis have sinus surgery and what was the outcome. We see top PANS/PANDAS doc out of state our son has strep and acute sinusitis the strep titers are coming down form 800 to 236 with augmentium but he can't treat the sinuses with antibiotics so we have to see a PANDAS friendly ENT next week and its been almost 7 years of trying to get our son better so I am thinking sinus surgery ( both my husband and myself had this done) genetic condition. Anyone have any kiddos with PANDAS or PANS have this surgery done? I would love to hear feedback. We are seeing Dr. Donald Keamy at Mass Eye and Ear next week.  Thanks so much for any help to ease my mind at this point I am almost like take the tonsils out and do the sinus surgery I just want it all out NO more infections I am so sick of this condition!!!! 

  4. Thank you so much for the info. Was it a long recovery our son has been on antibiotics since March 2016 so we are hoping if we go that route he will be covered in the antibiotic route anyways. Thanks!!!! Did your son have acute chronic sinusitis did it get rid of it for good? Thanks so much!!!
  5. Has anyone had their PANS/PANDAS child with Acute sinusitis have sinus surgery and what was the outcome. We see top PANS/PANDAS doc out of state our son has strep and acute sinusitis the strep titers are coming down form 800 to 236 with augmentium but he can't treat the sinuses with antibiotics so we have to see a PANDAS friendly ENT next week and its been almost 7 years of trying to get our son better so I am thinking sinus surgery ( both my husband and myself had this done) genetic condition. Anyone have any kiddos with PANDAS or PANS have this surgery done? I would love to hear feedback. We
  6. Hi . We see Dr. T in New Jersey and just switched to him recently and Best Alison Malhoney was our advocate and wanted our son on Augmentium XR but we could barely get our doctor to do the augmetium at all so after begging and pleading and thank go d we did it was the only antibiotic that got our song strep titers down from 800 to currently 236 ( Dr. T said ) not the Reflex the other doctor was treating all his " PANDAS" patients with. Out son needed up having PANS tats why we went to Dr T . Our son wasn't getting better he ended up having 2 infections strep and Sinusitis ( Panusitis I thin
  7. My son has PANS he has strep and chronic sinusitis . Both cause cause PANS. They are both genetic reversible conditions.
  8. Hi. My son is strictly PANDAS . He was misdiagnosed for 6 years all MH DX and many many such meds that made him worse finally got rich DX and antibiotic and Anti-inflammatory meds, and with Behavioral therapy saw huge improvement last 3 months of school last year ( bust still long way to go) school paid for a $30K summer school based summer camp where the kids and staff were sick every single week, my son flared so bad everyday, it set him so far back in his recovery ( poop smearing , aggression which we had 98% decreased, peeing his pants all day long) complete nightmare after so much hard wo
  9. Hi. My son is strictly PANDAS . He was misdiagnosed for 6 years all MH DX and many many such meds that made him worse finally got rich DX and antibiotic and Anti-inflammatory meds, and with Behavioral therapy saw huge improvement last 3 months of school last year ( bust still long way to go) school paid for a $30K summer school based summer camp where the kids and staff were sick every single week, my son flared so bad everyday, it set him so far back in his recovery ( poop smearing , aggression which we had 98% decreased, peeing his pants all day long) complete nightmare after so much hard wo
  10. Hi.. Our son is on Keflex for 8 months and his doc just recently started him on Augmentium 850 in AM and 850 in PM for 21 days for the reflex alone wasn't reducing strep titers. Anyone else have any luck with these 2 antibiotics used together. And son only on since 6 days and we see more speech. But he is sick again so he is flaring right now. Does Augmentium work fast and well for PANDAS? Also anyone use Gutpro for their PANDAS child I have been reading a lot on how probiotics are bad for PANDAS but there is a probiotic Gutpro specifically designed for PANDAS because it's D-lactade free. And
  11. Hello, My son has been diagnosed with PANDAS we do have a PANDAS doctor who we are NOT looking to leave but need a second opinion from an expert for our son is a tough case with very high titers. We greatly respect our doctor and he has a great care rate but none of his patients are as sick as our son. He went 5 years misdiagnosed and mistreated on several horrible psych medications so his recovery is set back. Anyone seen Dr. Elizabeth Tapas- Newton Wellesley Hospital Immunologist. She has a 4-6 month waiting list I have heard but will wait if she is good and has good results with
  12. Hi, Thank you so much for your feedback. But I have to disagree on my end PANDAS as of 2016 there is way more information out there and working with the nationwide advocate (who has and is working on 50k cases ) and I spoke personally to Dr. Cunningham ( came up with the Cunningham Panel ) most famous PANDAS doctor and her clinical nurse who was a psychiatric nurse for 40 plus years before she started working with Dr. Cunningham and she told me word for word NO child with PANDAS should be treated with psychiatric medications. If they are and they respond well it can be very, very likely th
  13. Hello in regards to the last post, The only problem with Psych meds helping with the symptoms/behaviors of PANDAS/PANS kids while they heal is that psychiatric medications are the worst medications (proven studies) to give to PANDAS/PANS kids. Actually if your child responds to these psychiatric medications while being treated for PANDAS/PANS there may be a questions as to whether or not the child actually have PANDAS/PANS. See children with this disorder don't respond to psychiatric medications it is a known fact that they make the PANDAS worse. It may look like they are doing their job b
  14. Thank you both for your response it actually makes me feel like I am not going crazy. It's been 8 weeks off risperidal and he is still doing terrible the doctor said it could take up to 9 months for the brain to return to it's natural balance after being on the medication. The saddest part is the doctor says as soon as it's back to normal our son will be normally functioning developmental child. Risperidal is not even FDA approved for children the more I learn and talk to people it really should only be prescribed for adults with schizophrenia. They are giving it out like ADHD medications. T
  15. Hello, my 7 year old son was misdiagnosed with ASD at 5years old and ADHD at 3 and half. We have taken him off the ADHD med because it's one you can stop immediatly and saw a positive response. Next came the weaning of 1mg of risperidal 3x a day that was a complete nightmare. Aggression/attacking us ( he bite my arms so bad I couldn't wear short sleeve shirts for a month). Crying/screaming, violent, insomnia, constipation, vomiting, anxiety, concentration problems, confusion, crying spells, delusions, depersonalization, dizziness, headaches, irritability and the list goes on and on. Basica
  16. Every article and doctor/advocate I have spoke to says the two worst medications for PANDAS is ADHD meds and risperidal. Hope this helps.
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