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L Haven L Haven

Parents of children diagnosed with PANDAS

I am the parent of an 11 year old diagnosed with PANDAS. I'd like to correspond with other parents whose children share this diagnosis; perhaps we can share information, experiences, and hope.

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  • jules8484 jules8484

    Hello L Haven,

    We have a PANDAS/PITANDS daughter who has just turned 7. At present we cannot find the right medical care for her and it is becoming a nightmare.

    At the moment she is off school again, we have tic symptoms, sleeping problems, regression, tears and tantrums, to name but a few issues. She has just had a throat swab for strep, but we think it is viral this time. Our ped. will only treat with SSRIs which we have refused. Have you looked into long term antibiotics and IVIG for your child, and what symptoms do you see? We are feeling very alone with this condition, and are fighting with doctors for help.

    I would not wish this on any child, but it was very nice to find another parent who we can relate to. Hope that your little one is well.

    Regards Julie and Steve

    • amiejake amiejake jules8484

      Hi am a mother with a child with PANDAS who is currently the worst patient our PANDAS doc has seen from the how long it took to diagnos ( 3-4 years ) and all the psych meds he was on. What I can tell you we see the BEST doctor and our son is geting better but it will take yeras because of how long he was sick and the detoxing off antibiotics. my advice is to NEVER allow them to give you any psych meds. Psych meds make PANDAS worse and are the worst possible think you can give to a PANDAS kid it does the complete opposite it makes them worse no matter if it's a stimulant, SSRI, Anxiety med, Anti-psychotic NO psych meds. You need to find a pedi that will put your child on long term antibiotoics. Mild ones at a high dose and ALEVE ( Yes ALEVE) 2 times a day to take down the inflamation sourounding the frontal globe of their brain were the infection is. That's it NO IVGI it's expensive and if it does work it only works for a short period of time, same thing with steriods only works for a short period of time they are bandaids and IVGI is a very expensive bandaid. It's pediatric so remeber antibiotics until at least 18 years of age or sooner some outgrown before 18. I myself have had to wean and am detoxing my son of the most dangerous anti-psychotic out there and he is 100% better off then on so whatever you do NO psych meds. You need to do research find a good pedi that bellieves in PANDAS and will put your child on the right treatment plan. My doctor ONLY take 100% PANDAS cases and has a 100% cure rate so trust me I have done my research and I have seen the results. But along with treatment once you get the right treatment (unless is diagnosed right away which was not our case our son has been sick for many years and very developmentally behind) you will need the best providers in your home all week, skills trainers, respite, in-home therapy. It's not just finding the correct treatment and doctor it's also finding the correct team. We have therapist at hour house from 3 different agencies that follow the same behavior plan 6 days a week! it's a TON of work and only because doctors won't do a simple strep test or Lyme test. They send off to menatl health providers that's why all these kids are sick and in residential homes my heart breaks becasue once they are there is no going back. Good luck and I hope I shed some light for I have been through a huge journey that I still live everyday and will for years but I truly beleive there is a light at the end of the tunnel. And remeberback to school all those illness makes the nehaviors and aggressions worse. My son is going to doctor today HUGE increase in behaviors/aggressions and our entire family is sick. good luckit's a long journey first start is finding the right doctor most are psych doctors who beleive in still treating childrens with psych meds, you can also have your pedi order the cummingham panel if they are willing. any doctor can order it for a patient. First test on PANDAS not 100% yet but pretty close. Good luck!

    • Gogigigirl Gogigigirl amiejake

      Could you poasibly share what psych meds? Before our daughter was diagnosed she has been put on serious psych meds and I am hoping to get her off them. We see a PANDAS specialist tomorrow and am sacred because we know nothing about this disease

    • amiejake amiejake Gogigigirl

      Our son was put on stimulants, SSRI's, anti- psychotic and gunfacin ( not sure what class this is) he has responded horrible to each and everyone he was taken off immediately all of them within 2 weeks that how bad he responded. They kept him on antipsychotic for 3 years started at dose .25mg up to eventually 3 mg a day ( highest dose a child can take) it took 6 months to wean him, $25K in home damages and he beat us up/ bite us and attacked us 24/7 during those 6 months. He is still detoxing it is the worst class of meds and takes 9 months to over a year to detox. But he is 98% better off all psych meds. The only one at this point I would even comtemplate him trying ( while going through treatment) is a benzo like a small dose of adivan to help with anxiety and OCD while we are working on getting his high strep titers down. But that's it I have only just decided this if it comes to it because he is suffering so much but I would NEVER another psych medication anywhere near him.

      Good luck I have seen first hand what these meds do to PANDAS kids and the weaning processes is even worse! Be careful they treat kids as Guinea pigs with dangerous psych meds.

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  • Loobs Loobs

    my little boy has been diagnosed with tourettes syndrome, i suspect it may be PANDAS but am finding it impossible to speak with any medical professional who even knows what it is!!

    has anybody had any joy getting their child treated in the UK?

    any help or advice would be most welcome.

    Lou

    • katie61793 katie61793 Loobs

      Hi there

      I know you posted over a year ago but just came across your post whilst on a google search for PANDAS support or consultants in the U.K. Did you find anybody in the U.K.?

      My 4 year old has been showing symptoms but we are just being told it's tics and I don't think it is so trying to find someone who speaclises in PANDAS.

      Thanks

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