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  1. Yesterday
  2. Bttrfly1

    Shafrir

    Thank you. We also see Dr. Fox but also too early too tell. The reviews that I have seen about her is good though and then you don't hear a peep about them... so I'm assuming it's like the lyme message boards (a lot of chatter pre and during treatment) but when they get better no one goes back to mention that. Our labs with her showed high viral titers and she is working to address those. No lyme. We just had our results meeting with her. I do like Dr. L and we'll continue to see her for our annual (unless there's a major change). My son caught strep twice after IVIG, T and A, and on augmentin. The second time my son caught strep, L told Andrea that he needs IVIG. But no explanation why but I'm assuming to boost his immune system. But Dr. Fox is working on that.. I then asked if he could switch antibiotics because it looks like the augmentin isn't working and Dr. L relayed, "he shouldn't catch strep on augmentin. IVIG." I called back and asked if Dr. L could spare a few minutes to explain her decision but no calls.. I'll go see Shafrir too.. I don't know what he'll say but maybe a second opinion from another pediatric nuero will help.. or not help. My son is doing fine. Since the switch to Azithromycin (advised by Dr. F), the flare has gone away and we're doing all the supplements.
  3. fistking24

    Breathing tic -advice needed

    Hi. I got a similar case. I try to count. 1 2 3 4 to 20 I know how bad this is. I had all sort of tic come by. I try to keep my mind occupied or distracted. Imagine thing you know. For example. Like how does a car engine works. Imagine the engines pistons etc. How that made? Youtube it . Learn and for the future use those thoughts of how the thing was made. When you watch a movie. Do you calm down? Ask someone you see a movid with and ask how calm you are and how many times the tic kicked in. Hopefully it helps. Im 32 of and I try do beat the tics . They go on and off.
  4. Last week
  5. dasu

    Shafrir

    Funny we also see Dr L. So I totally understand the only way to get an answer is book an appointment and we live 2 hours away. Not sure about her staff leaving there is high turn around in that office. My son is now trying Dr Fox in Charlottesville but it’s too early to tell. For now blood work is completely normal except Ana. Shocked her. So if she is good my daughter will also see her. Still think about shafrir though. He pushes insurance which is a huge plus. That is the biggest difference. She is also a more approachable and my kids always liked taliking with L except during the worst flares. They both use current guidelines and don’t appear to mess with Lyme etc.
  6. autumncodinha

    Order of treatment?

    Hi Families! My 9yo first showed signs of tourettes at age 3. He has waxed/waned for several years. We have not needed to do anything but toy with his diet, introduce magnesium until now. In the springtime his tics increased more dramatically and they have not waned. We saw the ped neurologist around 4/5yo for official diagnosis but nothing since. Seems the right time to step up our game. He did have some issues with strep when younger and had tonsils removed years ago. My son is very bright, athletic, no school issues etc. He does not seem to have any psychological concerns at this point. I would say if anything some (very) mild anxiety. His main tic is opening his jaw very wide sometimes several times in 1 sentence. His "cough" has been present on/off (mostly on) for about 5 years. He jerks his head a several times each time when dealing with helmets (baseball, biking) and does a lot of baseball hat adjusting. There have been others but that is the current list. He is in 4th grade and his mouth tic is the first noticeable outside the family/good friends, so the first time he is explaining to his peers. So far so good. My question is..... where to start?? (beyond diet). So many directions, I'm hoping for a roadmap that may have worked for you? - Investigate/rule out PANDAS/PANS (we are in chicago suburbs so my guess would be to see Dr K?) - Functional Neurology (read about Dr. Imber in Lemont)? - CBIT (anyone have experience at Central DuPage Hospital/Northwestern Memorial - Winfield)? Others? - Heard about Dr. Raden in Highwood IL dealing with pandas, yeast, parasites etc) - Dental applicance (he does have an overbite... will eventually need braces. Should we consider doing sooner (in case it helps) or put off as it may be a trigger? THANK YOU all so much for your time and guidance. LOVE LOVE Chicago area referrals but of course we are willing to travel if needed.
  7. Hi, An update since my last post - since starting the sessions with the functional neurologist, I would say that her tics have improved. Initially, she all but stopped the squatting tic and continued with blinking (although less frequently.) Over the last week, there was a switch where the squatting tic came back but the blinking was almost gone. However, given the short timeframe (about 2 weeks), I'm not sure if the improvement can be attributed to the exercises with the functional neurologist or just waxing and waning of symptoms or other factors.
  8. fistking24

    "Breathing Tic"

    I do it thru the mouth. I try to keep my mind distracted. It helps. It comes and goes. I been taking Pimozoide(orap) It does help. Im 32 and its 2018 and still trying to overcome this.
  9. Bttrfly1

    Shafrir

    thanks. How is his approach different from Dr. L? We see her but she seems to have gotten so busy she can't return phone calls and emails she responds with a simple yes or no with no additional follow-up. I also heard Dr. L's staff from Georgetown went to work with Dr. Shofrir. I am looking for a second opinion on treatment and need someone who is willing to communicate.
  10. dasu

    Shafrir

    We tried him once and ended up going on another direction mainly due to insurance. He is not the best listener, pushy with questions, kind of blunt. I guess typical Israeli attitude. On the positive side he is available and responsive and truly will work for you. Sinai hospital is in a rough area but the staff there are helpful. The same cannot be said of shafrirs staff.
  11. Bttrfly1

    Shafrir

    Has anyone seen dr. Yuval Shafrir at mt. Sinai? Baltimore
  12. Does it exist? Theres gotta be better drug development other than just making you calm and sleepy to reduce tics. Ive tried risperidone and haldol and both make me extremely drowsy. I also take clonidine. Even cannabis oil with high CBD causes sleepiness. I want to take meds on morning too but i gotta work! I have my next appt with my doctor next month and i wanna tell him i wanna try med that doesn’t make me drowsy. But before that, i want to know if any med like that exist for tourettes. Thanks so much in advance.
  13. Moderately autistic 13 year old has been battling PANS/PANDAS for 2 years (if not earlier now that i look back at his behaviors). working with an integrative/functional PA in FL but thinking we need someone who is an immunologist/MD but not someone who will just prescribe Antibiotics, IVIG and not consider alternative medicines. Each time my son takes antibiotics, he gets better once the whole round of antibiotics is completed,where he is super laid back, sleeps well,very calm, no OCD and much reduced tics to a point where i wonder if he's just lethargic and spaced out. But this clam lasts but within a week, behavior slowly starts to become unstable and we're back down the road of self injury,rages,sleep disturbances, and his Tics and OCD progressively gets worse too. .......last month alone he's had two seizures (2 to 3 minute ones each time). I have no idea what next to do, think or even plan......Any feedback and suggestions will be much appreciated.
  14. maybaby, How has Dr. DeMio worked out for your family? We live in FL and i suspect my ASD 13 year old who has been treated with antibiotics for past 2 years for PANS/PANDAS has Lyme and I am working to figure out who might be a good MD (that is also open to alternative treatments) to see. It's like finding a needle in a haystack. Your feedback on Dr. D or anyone else you may have seen or heard of, is much appreciated.
  15. eacampbell67

    Sydenham's chorea along with PANDAS

    You're welcome. . Sure I'll inbox you with my info so we can chat, would be great to compare notes
  16. maryangela

    New Tic

    My DS14 sees Donald Raden, MD in Highwood, IL. He’s an integrative psychiatrist. He specializes in Lyme, but also treats PANDAS/PANS. My son tested negative for Lyme, although he was positive for Mycoplasma on & off. He’s treating him for Autoimmune Encephalitis, using IVIG, and herbal antiviral, antibacterial and anti parasitic remedies. He will do phone consults, I believe.
  17. jmiullo

    New Tic

    I have a 14 year old son who has been struggling with PANS/PANDAS for 2 years now. Too many rounds of antibiotics and marginal effect each additional time he takes a round of them. I suspect he might have Lyme as Mycoplasma keeps showing up. We live in Tallahassee FL and I am looking ideally to see an MD that is open to alternative treatments. Can someone share recommendations, any please. Even if it isn’t an MD and not in FL?
  18. Back with more update. Even on a declining thread, my ds tics kept on morphing , however they got increasingly harder to notice. I think that I still see some tics on her face, I am no longer certain. If I were not well informed on the topic, I'd not notice anything. However I got a feeling that school may increase her stress little bit and may trigger old tics. Not sure though. This is how it's going on at the moment.
  19. bobh

    Advil

    mlee, there is a rumor among MD's that some abx's might be anti-inflammatory as well as fight infection. That helps them explain why they work so well sometimes. But I don't think that this aspect of some abx's has been well understood - I see it as speculative (not to say it isn't true).
  20. Thank you for your post! Interesting because I was told by Dr. L that Ritux starts working 30 days after the first dose, so in our case, about 17 days ago. My daughter has MAJOR cognitive problems. I do see small positive changes in her memory but she is not at the point where she can read. I would love to talk live and compare notes, if you are able to.
  21. eacampbell67

    Sydenham's chorea along with PANDAS

    my daughter's last ritux 8/2 so this week we are 7 weeks post 2nd part of 1st infusion. we seen some small improvements - my daughter has some major cognitive problems ( forgot how to read) & hearing sensitivity. her memory has improved and seems a little more there- we where told by other parents that you have to waiting until week 8 until we start seeing results. we had her blood work done last week to see where her b cell levels are.
  22. Hello, My 23 year old daughter was diagnosed by Dr. L with Sydenham chorea and autoimmune encephalitis. She had Ritux twice, last dose was 8/14. I have seen baby steps forward in her but nothing big yet. Curious to know what others have seen...its been over a month now since the last dose. Would love to know what others have seen at this point. Emine
  23. Hi Cary, How is your daughter doing?
  24. Earlier
  25. eacampbell67

    will Normal return?

    so sorry to hear about your son, my 15 daughter has similar symptoms that started in 8th grade - great student, then summer of 8th grade hearing sensitivities, cognitive decline, and regression. We chased anxiety, Lyme, other co-infections, it turned out to be AE (autoimmune encephalitis) so inflammation was causing her symptoms. We believe if was brought on by strep , we had IVIG, steroids - she improved enough to attend half days for two months of 8th grade. We then had her tonsils removed and had 1 round of Rituxan. Her memory has improved but still has not fully recovered, she should be in 10th grade but will have to redo 9th and probably part of 10th. She does therapy twice a week - which helps with her OCD, anxiety. We tried SSRI and it didn't really work well for her. CBD's help her with anxiety. Like you we worry if this will be long term, but what I've heard and believe it just takes time for the brain to heal after the inflammation. Not sure if this is true in your son's case but either way Wish you son a full recovery to good health - hang in there
  26. We have not gone through similar, so can't comment too directly, only on your statement "...apparently in true PANDAS cases it [OCD] accelerates anxiety and vice-versa?" Well, I would say that OCD, if it starts more slowly in a PANS/PANDAS child, is somewhat calming at first, when it is not otherwise debilitating or noticed by others too much, because there is some satisfaction derived from "repeating it right" when they finally get there. But when it grows much more significant later (or for any person with severe OCD) the sufferer fairly quickly becomes exasperated with how debilitating it is, and sometimes satisfaction is eluded, and so of course that creates plenty of anxiety. So I think your statement is fully true for those with very quick onset of PANS/PANDAS, and eventually true for all. If you can get and afford the ivig, the potential benefits probably outweigh the risks (in my mind).
  27. maryangela

    New Tic

    @Bttrfly1 DS did 1st HD IVIG with Dr. K 18 months ago. He does not take insurance and the surgical center he uses, did not take our coverage. We paid out-of-pocket. My new employer is self insured. They initially denied 12 weekly LD, but approved after written appeal. This included results of the Cunningham Panel. Doctor wanted to switch to monthly high dose, which was denied, but then approved after a peer-to-peer phone call with insurance. We are very fortunate for the coverage. We were on the verge of selling our condo to pay for treatment. 2 years ago, my DS was pleading with me to “figure this out and do whatever it takes to help him”. As for switching from weekly LD to monthly HD...it is the same amount of immunoglobulin over a 4 weekly period. Our integrative MD, generally recommends weekly LD, because it lessens the side effects (headache, nausea), but the way it worked for us was that after the LD infusion, it would stir up symptoms for a few days, then DS would begin to improve, and then it was time for another infusion, and symptoms would get stirred up again. The monthly HD is working out much better. My DS also is low IGA. He gets Gammagard immunoglobulin. I believe that’s best for low IGA. I don’t think Dr. K uses Gammagard. He uses the same for everyone, I think. I’m sorry you are frustrated with Dr. L’s office. She seems wonderful, but so many sick kids...hard to keep up. We are fortunate that DS’s integrative MD is very responsive to email.
  28. eacampbell67

    Rituxan thoughts/advice needed

    We work with Dr. L and had my dd 2nd infusion of ritux on Aug 2nd. No major complications during or right after, only a slight headache. She was not very fatigued. We did not keep her home we traveled to the beach the following week for RR. She was fine. We did in the Dr. L's office. We treated all co-infections prior to Rtiux, plus we had done IVIG and her tonsils out prior to Ritux. We're told to wait until 8 weeks after her 2nd infusion to see real improvements. That's held true - we have seen small improvements in memory, and fine motor skills, still can't read and has major hearing sensitivity. This started a year ago, we chased Lyme, and all other infections. My dd is 15 and will have to redo 9th and probably 10th grades. hope feedback helps
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