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OCDandPANDASmama

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  1. IVIG for untreated PANDAS

    DD will sit and pick the skin on her lips until they bleed.. Her newest tic is finger combing her hair, not a little, but to the point she's making it fall out. But her tics are mild compared to the big compulsions that literally consume her 24/7
  2. IVIG for untreated PANDAS

    I'll definitely see about getting DD's sinuses looked at again, her former immunologist dismissed it as no big deal because they aren't debilitating but they've been bothersome long enough to justify further testing. Best of luck with the rinse, if I've learned anything from PANDAS it's always choose hope I've read a couple of people say IVIG helped relieve everything but the OCD, which unfortunately for DD is her biggest symptom. I'm glad it helped your DS though! Do you have any ABX recommendation if it does turn out to be a sinus issue for my DD? Thank you for your response! I already love the atmosphere on this site.
  3. IVIG for untreated PANDAS

    -One concern I had with IVIG is the fact it has donor elements and I'm afraid it could transfer a virus or some illness not found to DD. Am I being paranoid about that? Glad to hear it helped your DS! -My DD skin picks as well but Drs said it's just a tic/habit, don't think her's is a compulsion. Thank you very much for your response!
  4. IVIG for untreated PANDAS

    Hi, thank you so much! I'm so glad to hear your DS is doing well. 1) I think they did scope her sinuses before they removed her tonsils because they scoped her throat and diagnosed her with asthma. But I will certainly check her records to make sure. To this day, DD can hardly breathe out of her nose and has no sense of smell unless something is right under her face. Just wondering, what ABX worked best for your DS? 2) I'm going to ask her new doctor this week about testing her for Lyme. 3) My DD got put on Luvox when she was 11 and the first year it did wonders for her, but her pysch DR was the most condescending and ill-informed doctor I had ever encountered and decided one day my DD needed to go from 25 mg to 200 mg or she would 'build a tolerance'. Granted, I blame myself for allowing him to increase it so rapidly, but she was just doing so well and I was afraid to mess it up. Within 2 weeks my DD was suicidal and could not see! Even after we stopped the med, her vision is still awful and she had 20/20 all her life. I think a lower dose of Luvox wouldn't be a bad idea but DD is petrified of it. She told me the only SSRI she could physically tolerate (she has a super fast metabolism and is hyper-sensitive to side effects) is Cylexa. But I'm hesitant to give her any pysch-drugs until after we try abx because IDK what would interfere with what. Thank you again for your response! It reassures hope is still out there!
  5. IVIG for untreated PANDAS

    Hi, new to the forum but have been observing for a few months. I'm in desperate need of any answers possible. My DD first started having severe OCD symptoms at the age of 7 (she's 17 now). I had no idea what caused it or what PANDAS was. Through the years she has been on every SSRI imaginable (which had very little - if any - effect on her OCD symptoms and gave her suicidal thoughts) , been through ERP and CBT, hospitalized, you name it... In late 2015, an immunologist ran several tests and diagnosed her with PANDAS. Along with the OCD and being prone to strep, she also has insomnia and sinus/breathing problems. The only advice the immunologist gave was for us to get her tonsils and adenoids removed, which we did, and DD got strep 4 times within six months of the surgery. For the past two years, I've been going through doctors trying to convince one of them that DD needs long term antibiotics (we live in a very strictly textbook, narrow-minded location). We have an appointment with a new one this week with a reputation of being progressive and his secretary told me he is familiar with PANDAS. I also recently contacted Dr. K in Chicago who told me DD would most likely benefit from IVIG. Do any of you have experience with IVIG or any words of advice? Did it provide any relief of OCD symptoms? I've read mixed reviews but am willing to try anything at this point. I'm also going to see if this new doctor can test her for Lyme. Another concern I have is that God forbid her PANDAS may have gone too long untreated and she's suffering from irreversible brain damage Sorry for such a big post I am just at loss at what to do here.
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