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Everything posted by michelleb

  1. Sure. We have been through but are finally on the road to recovery. We did IVIG and Plasmapheresis. They helped with rages but did not really help at all with the suicide obsession. My son continued to beg us to help or let him die every day. Then we finally did Rituxumab. Eight weeks to the day from the last infusion he stopped begging to die. Since then he has been making VERY slow but steady progress. I think the inflammation has been receding steadily but he has a lot of healing to do. He was sick for a very long time before we knew about PANS and then were able to stop the inflamm
  2. There is a Rituximab treatment for P.A.N.S. closed Facebook page. Ask to join and ask there. My don had Rituximab in November. He has been getting slowly but steadily better since then (nothing had worked prior). I don't know if it could have given the Lyme a chance to resurface. Possibly since it does "turn off" the B cells. Hope he gets better! This is so hard.
  3. There are some essential oils facebook pages - try looking them up and asking there.
  4. We have only been in this marathon for 2 years - one year pre-diagnosis when my poor kids was told he was crazy and health with therapy, psych meds and CBT that did not really help because it was just not being done well if you ask means another year of being treated by a PANDAS doc. Since being diagnosed we have tried lots of things and the rages and constant obsession with suicide seem to have passed (for now) but he is still crippled: unable to leave the house, dress, or interact with anyone other then his sister, my husband, and I. We considered Rogers last year when we were extreme
  5. We are scheduled for Rothman Institute but I am not sure now to get my son down there. He will not get dressed, will not leave the house, etc. he gets incredibly violent and hysterical if we try. Getting him to any Dr. appointments is and really only possible with several strong men to force him, hold him down in the car, and then restrain and drag him in to the office. I cannot imagine how we could ever get him to Florida. We are also scheduled at one point to go to Rogers in Wisconsin because the Florida Program would not take him (too suicidal at the time but that has passed). They ha
  6. This is great news! We have tried CBT in the past but it didn't work - only made things worse - but I think it is because he was mid flare and just couldn't handle it. We have now done IVIG, PEX and Rituximab. The most severe symptoms of rage, anger, hallucinations have gone away but still a LOT of OCD - refuses school, refuses to leave the house at all, has cut himself off from everything. I am still hoping for the Rituximab to kick in but we are scheduled for the Rothmans center. I am just worried about how to get him there and what exactly will happen once we are there. Getting him to
  7. Nutshel - We got tonsils out before PEX. It didn't help (except that he was his old self for a about a day after the surgery). It is pretty rough - lots of pain which did not help our anger issues. The possible good thing is that they do a deep culture on the tonsils and may find a specific bacteria that leads you to a better antibiotic choice.
  8. To pepper1 - Thanks for the feedback on Rituxan. I am a wreck just waiting. Hostility and not taking meds is a big problem for us too. I have completely stopped everything especially the SSRIs and the antibiotics because he just won't take them and a pill once in a while does more harm than good. Benadryl and Advil seem to help when I can get him to take it - which is almost never these days. ​Our boy was so aggressive and suicidal when we went in for PEX the first time that they refused to do it. We ended up doing IVIG first and that helped a little - enough that I was able to convin
  9. My son had PEX at Georgetown in May. The process was okay but they were pretty bad with the needles. My son has rolling veins and they were not good with that. They really poked him pretty mercilessly. He also still complains about the pain when they took the line out. Having said that - he complains about everything. day to day the process was pretty straightforward other that the needle issues. My son always has a great day after sedation so it was a treat to have my old boy back again for about 24 hours. We ended up having to stay an extra two days because his fibrinogen numbers wer
  10. My son has been sick few years - but only diagnosed in February of 2015. He reacts very badly to steroids and fought PEX tooth and nail - but got it in May. It helped a great deal - but he is still very ill. It was basically the only thing that worked at all and even though he is still unable to leave the house, attend school, eat regularly or in anyone's presence, etc, all the violence and daily pleading to die stopped after plasmapheresis. My son hated it - because being in the hospital is extremely anxiety inducing for him, but I think it was totally worth it. We have actuall
  11. How do you get these tests? I would love to test using hair since it is impossible to get my son out of the house or to let us take blood.
  12. Thanks! Helpful. I have been wondering about Hypnotherapy. It would be tricky to convince him of it but I will try. Depending on the day he can be very rational. I am also going to try the B complex. of course I need to get him to take it but I have seen several people talk about it and it seems worth a try. I have tried the hot chocolate - it worked for a while. Now he says that it has ruined hot chocolate for him. anyway - I will just keep trying different things. He destine them eventually - it is just a battle and he is pretty good at knowing what is what so he chooses what t
  13. My son has been sick for a couple of years and has been treated for PANDAS/PANS since Feb. 2015. He has gotten a bit better in the sense that the violent rages and content attempts at suicide have subsided. Now he just talks about it and sits in the basement. He used to take medicine easily and we could get him to appointments. Now he has decided there is no hope and he does not trust any of the doctors. He is terrified of hospitals and needles (didn't used to be". Getting him to take any pills is really difficult. He has been on many meds and I think he is just sick of it. He says he
  14. Can you tell me how you treated the Bartonella and Babasia? We are not getting good response from IVIG or PEX. there was some improvement - the violence and rages have gone away, but depression and suicial obsession continues. I am unable to get him anywhere to do a blood test. He used to have no problem with needles. Now he won't leave the house and has an absolute horror to needles, doctors and hospitals. He won't go. I would have to force him into the car with two other people to hold him down, he would never sit still for a needle to go in and would in fact pull it out if it did.
  15. We also found that there were certain things that made the violence worse. Restraining our son just led to head butting, biting, scratching or throwing anything he could get his hands on. Pillows were great for blocking. I have done the holding the door shut thing many times and it is scary. Interacting with him as little as possible during these rages was best. We crated a sort of a safe space in our remodeled basement (that now has holes in every wall) where I took away anything that would hurt to throw - so left soft balls, lips, etc, and tried to make it suicide proof (because my son i
  16. Thanks both of you. I was not able to get my son to let us take any blood by the time I suspected Lyme - but we went ahead and treated him with 90 days of Doxy. Not sure if that or the PEX, or just not making him go anywhere at all (eliminating as much stress and anxiety as possible) is what calmed the rages and violence. I am still waiting to talk to Dr. L to get a better idea of how to proceed but hearing that this won't necessarily cause a flare is making me feel better. If it is the only way to get better I can deal of course - but we are so tired, i would need to really brace myself a
  17. Thanks. Good to know. Unfortunately my son reacts VERY badly to steroids. The two times he has gotten them he has ended up in the emergency and psych ward because he becomes completely psychotic. I know that solumedrol is the normal protocol with the Rituximab but hoping we can avoid it this time.
  18. Did your daughter flare after treatment? That is what I am terrified of. I feel like while we re not better yet with meat health and depression symptoms, the rages and anger have subsided and I am terrified of gong back to hat with this treatment. Wondering if we should wait and see if increased SSRI and time from the May Plasmapheresis might work.
  19. Can you tell me how the write-in inclusion went at Georgetown? We are supposed to go in next week. We have very little information. My does better if we can give him an honest idea of what to expect afterwards. He has been very disappointed by what he sees as false promises and misleading information - such as telling him IVIG will help and then only after he has had it that he might get worse first (he did and ended up in the hospital), and then telling him it will take 6 weeks, and then at 6 weeks telling him it might take a few months, etc. Does Rituxin make PANS kids feel worse bef
  20. My son had Plasmapheresis in early May. Since then the rages and violence have subsided - but still flare up if we try to make him go anywhere - like a doctors appointment. Now he does everything by Skype and basically does not leave the basement. It is not clear to us whether he is calmer because of the plasmapheresis or because we just don't make him do anything - he just sits in the basement playing video games, has not showered or brushed teeth in ages, doesn't leave the basement at all. He he is still very depressed and suicidal, and has anxiety though the roof, but he used to plead
  21. I have been there too. Here is what I did. Call the PANDAS doctor's office frequently and ask if they have any cancellations. This really has worked for me on several occasions. People do cancel and they may even remember you and call you when someone does. In the meantime, can you get your pediatrician or anyone to give you antibiotics while you wait. I managed to get my pediatrician to do that after much pleading. I even consulted with others to give him the recommended dose of Augmentin. If they won't then maybe the PANDAS specialist will call one in in advance of the consult. Don't
  22. This is an incredibly difficult thing to go through and I am not sure I will make it but I run. I can't do it everyday - and sometimes there is more walking than running but it helps to get outside and away, and cry. I literally bawl while I am running. My nieghobors may notice but that it the least of my problems. At least it gives me an outlet away from my kids. It doesn't help either of them to see me cry in the house. And sometimes I do see neighbors and stop to chat. I literally sometimes feel myself take a full breath for the first time in days. And please believe me, I am not athletic
  23. I am afraid to see it. First I wanted to go and wanted my PANDAS son to see it because he is so depressed and so stuck in his suicide obsession that focuses on wanted life to be perfect but there is no way to get him out of the house. Now that my daughter knows the premise - she refuses to see it because she says it will be too hard to watch. How did your kids do with the movie?
  24. I managed to get a helpful phone consult with Dr. T by phone and paired that with emailing him records and blood tests we had. He then ordered a bunch more. Weren't able to get all those because BT was imposible to take anywhere let alone to get blood drawn. Where are you exactly? We managed eventually to get him to Dr L literally had to wrap him in a blanket - in his underwear. Required myself, my husband and brother-in-law and had to hold him down while he kicked and screamed in the car. It was a nightmare but we were lucky it was only 45 minutes. Once we were there Dr L and her staff are g
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