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tinaw

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  1. Hi rhyanen, thanks for checking in. The blood work showed that his strep titers are still high. He also had positive IgMs for Rocky Mountain Spotted Fever and brucella. The doctors don't agree on whether or not he actually has those, or if they are false positives. However, he is on three new abx, which would treat all three infections if in fact he has all three. He is on more supplements than I can count and is now gluten and dairy free and low sugar, which is incredibly hard as he was already a picky eater. We have been able to get him to the doctors office twice, with large amounts of Xanax, but it is still torture for him, he barely made it both times and only did because he's incredibly strong willed, but it hurts to watch the terror and tears in his eyes. Refused bloodwork again, so we're going to try again in two weeks. He is not getting any better and I feel is continuing his long, slow, slide. Anger, which started showing up two months ago, is increasing - a symptom, or a natural reaction to the fact that his life sucks right now? He spends all of his waking time playing video games, because in his words it's the only thing that distracts him enough anymore. If he tries other things he used to like - reading, board games, Legos - he says his mind wanders. He won't be specific, but says it wanders to "bad places". Tonsillectomy and IVIG are still on the table, but not realistic right now. We've been told that a psychiatric hospital won't provide medical treatment and a medical hospital won't take him because he can't willingly cooperate. Even though IVIG could possibly be done at home he says he knows he can't handle the idea of having something inside his arm all that time. The only thing that has ever really helped, I think, is anti-inflammatories. Augmentin/Azithromycin helped for a while but that may have been the anti-inflammatory property. Steroid burst helped but was temporary. He takes ibuprofen and curcumin all the time, but it's obviously not enough. I might beg for another steroid burst again just for some temporary relief, if nothing else. We are feeling lost. It's been a year since symptoms started, and more than 7 months since treatment started, and though there have been some temporary gains he continues to decline. We are trying to stay hopeful but somedays it's hard. I hope that you are having better luck with your son. I look forward to when I can come back on here and tell other parents to hang on, that it does get better. I just hope and pray that day actually comes. Thanks again for checking in
  2. glad to hear your son's doing better
  3. Thank you for posting this. My DS is 15 and we are feeling particularly down and discouraged right now. It's great to hear that there's hope. I will keep your son in my prayers for continued progress.
  4. Update: We finally got the bloodwork done on my son, but it was a long hard road that has left us exhausted and fearful. We had tried Xanax in the spring but to no avail, but on the advice of a dr who's a friend, we tried again at higher doses. Finally, we found a dose that made him kind of loopy and took away some of the anxiety. We arranged for our dr friend to do the blood draw at home, got a script for lidocaine cream, had our dr friend come talk to him (which he tolerated but did not participate in), and generally prepared him as well as we could. The morning came - and he refused everything - would not take the xanax, refused the cream, and refused to do the bloodwork. He said he didn't care anymore and would rather live like this than try to get through treatment. We spoke to our dr here and Dr. Schulman and both said time for psychiatric hospitalization. That the idea would be to drug him into submission (not really mincing words here, that's almost verbatim.). It sounds awful, but honestly, I was pretty close to agreeing, I could see no other way. Luckily, a couple of hours later, he decided on his own to take the Xanax, and then under the influence my husband was able to talk him into the bloodwork. At this point we had to go to the lab because our friend was now at work, but he went. The nurse had to come out to the car to do it, though, as he couldn't get himself in the building. So the good news is that after more than a month of trying, the blood work is done, but I feel no relief. It's only blood work, and he couldn't even get in the building even when drugged up on Xanax. How can we possibly get him in for a tonsillectomy or IVIG???? I suspect we are only postponing the inevitable, and that when we try to pursue the next step in treatment we will be back to facing hospitalization in order to get it done. For my son, that would mean EMTs coming to the house and forcibly removing him via ambulance. I can't even think about it, but also know we can't go on like this. FYI for those who recommended other meds, we also tried clonidine to no avail. Benadryl helps a tiny bit but not enough to make a difference. But thank you for sharing your recommendations and stories as you never know. 4nikki, we can't get the cunningham panel done in NY, and I can't get him to a doctor out of the state to have it done. How do you all cope with this? I am feeling so frustrated, discouraged and doubtful. It's been almost a year with no progress and I am worn out and losing hope. Dr. Schulman feels the tonsillectomy and IVIG would help him, but it seems so unattainable. I can't bear watching him in this much pain. Thanks for all your input and advice.
  5. rhyanen, thanks for your response. I'm sorry for what you're going through. Thanks for your suggestions. It sounds like our boys are similar! Is he able to handle any home schooling?
  6. Thanks everyone for your help. Laure, I am happy to hear your daughter is doing better, it gives me hope. I have an appointment for him tomorrow, which I'm sure he won't be able to go to, but hopefully the doctor can prescribe something else. I am going to bring your suggestions.
  7. Hi, I'm new here. My son is 15. He was diagnosed with PANDAS in May, but the doctors think he's had it since age 4. Antibiotics helped a bit over the summer, but are no longer helping. Steroids help but only while he's on them. We've tried numerous anti-anxiety meds and none of them help. I've conferenced with Dr. Kenneth Bock and Dr. Susan Schulman. They both feel that he needs IVIG and maybe a tonsillectomy. But here's our dilemma - he cannot leave the house to get to the doctor's office. Nor can he handle having a visiting nurse come to the house. So we have no way of getting the necessary blood work done, never mind the tonsillectomy or IVIG!!!! His anxiety is so bad that he has not been in school since last March and cannot even handle being home schooled. He cannot leave our property, nor handle visitors. He relies heavily on video games because in his words they are the only thing that distracts his mind enough anymore. His anxiety is constant. We've tried everything to get him into a doctors, and he wants to go but just can't. This is not about him not being willing. We tried Xanax and klonopin but they didn't help at all and possibly made things worse. I feel like I'm at the point where I'm willing to give him any kind of drug (legal, of course, and with a doctor's permission) to sedate him enough to get him in. Has any else experienced this, and what did you do? If he were 7 I could pick him up and carry him in, but obviously at 15 we can't do that. Again, he wants to but he really and truly can't. Any advice would be very appreciated.
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