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michelleb

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  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 inflammation. Our neurologist says we should expect at least a year of healing time for each year that his brain was on fire. He also has what I think may be permanent damage (but who knows, she says it could all come back) with cognitive and executive functioning. His new learning memory is very weak - and used to be very strong. He also has major PTSD. I know people say they do not remember - but my son does, and he especially remembers the hospitalizations - or at least still has the trauma from it so that is something we will have to work on when he is ready. For now - he no longer has rage, or begs to die. No more hallucinations. All that is great. He still does not like to leave the house and cannot sit at the dinner table with the family. He spends most of his time in his room alone. He does play with other kids on line but that is the only interaction with anyone out side the immediate family. Food issues have gotten better and he now eats pretty normally - although he is a bit picky. He still does not go to school but has gotten a little better about doing some work. We managed to get through 7th grade math on line (it was mostly review for him which is why he could do it - when we got to new material he got stuck). Hope this helps. Happy to answer any questions. I still get really down and desperate - but we are in a MUCH better place than when I sued to comb through these pages daily in desperation. If you don't know about them - there are many closed or private facebook groups that have been very helpful.
  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 extremely concerned we just couldn't keep him safe at home. The Miami program wouldn't take him and referred us to the residential program in Wisconsin. We never went - but only because I honestly couldn't figure out how to get him there. We have since gotten at appointment at the Rothman Center but I have had to postpone three times because again, I cannot figure out how to get him there. We are in a much better place now and I am hoping that as we continue to see slow incremental improvements I will find a way. So my question to house of you who have done Rothman and or Rogers is whether we should try again for the Rogers Center in Florida with Sr. Storch since it is more intensive. They wouldn't' take him last year because he was just too sick - but he is better now so maybe a 4 hours program would be better than the 1 hour at Rothman. Or, maybe given how hard it is to get him to go anywhere, one hour is all he would be able to handle. His deal is that he hates and distrusts all doctors (he has been down a pretty rough road), he has debilitating OCD and is terrified of leaving the house, extreme sensory issues - noise - talking, chewing, ticking clocks all drive him crazy, smell issues - very sensitive to smells and gags frequently, can't stand the feeling of clothes on his body so really refuses to wear anything but underwear, on and on. When we try to take him to appointments we really need to weigh whether it is worth the risk - he will jump out of moving cars bite scratch, punch, spit anything he can do to prevent you from takiing him in. Once he is there - he is self conscious enough with strangers usually that he cooperates - but the second he is alone in the room with my husband or I he goes nuts. When we leave him alone and don't make him do things he is afraid of - he is sweet and cooperative. Does anyone have experience or thoughts on this? Hee had rituxin a few months ago and I am seeing some improvements I am hoping it will get us well enough to convince him to try this - so assuming we do get him to go - I want to do everything I can to make it to the right program. I feel like I have one shot at this and if it goes wrong we will have a of a time trying anything else.
  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 had no advice on how to get him there. Any ideas? We are in a MUCH better place then we were last year but the refusal to leave the house has just gotten worse. I think we really need CBT/ERT but how do we get it? He is 100% uncooperative.
  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 an appointment is almost impossible so going all the way to florida and then still having to get him to their office everyday seems impossible. Any suggestions? Details on how it works once you are there?
  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 convince the hospital that he would not pull the PEX line out. He ended up doing okay. For us being put under sedation (to put the line in and when in got his tonsils out) gave us our old some back for a few brief hours. After that it was rough. For the last two days I had to stand out side the room so he wouldn't throw things at me. I hope it works for you. It did help us - but not for long. I think if he hadn't gotten sick in the third month post it might have worked better. Who is your dr? We got the PEX through Dr. L at Georgetown. Quote MultiQuote
  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 were very low. I am guessing it is because we had him on some major ibuprofen before he went in - that is the only medicine that has ever made a difference with him. If you are using it I would recommend stopping until after the treatment. Also re Georgetown - parking is expensive but I think you can use the valet at the Lombardi center. We discovered it with the Rituximab. We had to get a sticker on our parking ticket - but I bet they would do that for you in patient too - you might want to ask. It was only $7 a day that way (we were usually there about 7 hours). There are mixed thoughts in our house on whether it worked at all. I think it helped but we area long way from home. After the PEX we eventually stopped all the anti-psychotics and antidepressants he was on and things got a lot better. rages and panic stricken looks stopped, constant pleading to let him die stopped. Some of it comes up again whenever he make him leave the house (which is rare but sometimes necessary), but not at the levels of before. After 5 months though he got sick and we had a few bad incidents with flares. We just finished Rituximab at Georgetown and are waiting. I hope the PEX works for you. Eager to hear from others who have responded on how they are doing now and how the Rituximab worked and the tests done after that. We are still in a very bad place. Dr. L said not to expect results for two weeks (it has been one), and I heard from another family that they sw no improvement for 8 weeks. I am a wreck waiting. In the meantime he seems to have a cold and is refusing to take any medicine at all - to even the prophylactic antibiotics.
  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 actually just started Rituximab (only one of four infusions so far) in hopes that takes us the rest of the way - or at least further, towards recovery.
  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 to leave out - usually the advil or melatonin until he is desperate to get to sleep.
  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 can no longer sallow them - they make him choke. I manage to get him to take one or two usually at night - sometimes I can do morning an night. What I focus on has shifted a bit depending on what I am trying. I will get him just about anything he wants to drink it down - even decaf soda, choc milk, whatever he wants at this point and it is still a battle. Now they are recommending Rituximab and he refuses. It was hard enough to get eh IVIG - he freaked out and had to be held down and sedated, and the PEX - ithey refused to do it the first time because he threatened to pull the line out - it took a month of gearing him up for it and meds to calm him in order to get him to cooperate. Any ideas on getting him to do this? or to take meds? I see lots of recommendations for herbs and vitamins but I can't even get him to take the antibiotic or advil (which does seem to help) anymore..
  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. Anyway, I did get doc to prescribe doxy which he was on for 90 days. That did coincide with PEX and claiming from rages but hard to tell if that is what helped. He continues on a prophylactic dose of Zithro.
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