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mom md

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  1. Sounds very familiar. My son had titers of 1800 and many of the symptoms you have stated above at age 8. . We saw Latimer in 2009. She recommended plasmaphoresis due to his extreme presentation and the high titers. We were back to baseline after 5 days of plasmaphoresis and I thought we left cured. Four months later he relapsed (not as severe) after a flu shot, and ultimately needed some IVIG to retrain his immune system. We too, had not had a positive strep test since 2006. For us it was clearly autoimmune. Both azithromycin and steroids worked for us to buy some time until we could get the IVIG. They did not fix things, but allowed him to get back in school. They were a band aid for him. He is 12 1/2 now and doing phenomenal. He had no current issues, and has not had any for years. See Latimer. She saved us.
  2. Yes. Have three. First son-diagnosed in 2009. Very bad case requiring PEX and then IVIG. Now he is in 5th grade and doing great. To hear the story of where we came from you would not believe it was the same child. He is sweet, sleeps like a baby, no tics, no movements, patient, kind, focused. Unbelievable. My second child had responded to antibiotics and IVIG and is now doing well. We have not had any issues this school year. My third child was diagnosed this fall. She has responded to antibiotics alone but I will do IVIG without hesitation if needed. It has brought my other two children back.
  3. I have two children that have both received IVIG probably 6 times each. I asked their infectious disease doctor what she thought-if I should be worried. She said it is riskier for them to get steroids for poison ivy than to get IVIG. She said it is safe it is just risky to the wallet:)
  4. My daughter was diagnosed about two months ago. She is 6 and we caught it early. She was started in Omnicef and her symptoms started improving after 7 days. We were given a three month prescription. About 3-4 weeks in we saw Dr. L. She suggested trying a one month steroid course to see if we could "erase" the immune system memory since we caught it so early. Interesting idea and our immunologist thought it was also worth a try. She finished the steroids two weeks ago and she now has no symptoms. We saw a pediatric infectious disease doctor and she said to keep her on the omnicef for the next 6 months until she see sher back and if she flares again go straight to IVIG. I have two sons with the disease that have required IVIG and I plan to take her advice. I would love to think antibiotics and steroids will work, but knowing our history I bet there will be a round two. My best advice is to keep them on antibiotics and while they are in a good place get them established with a doctor somewhere that can go to the next level if they need it.
  5. I emailed Dr. Grant tonight to see if she would even be considered since she has already had steroids and antibiotics. She has also met with a child psychologist twice to talk to see if she had it and to see if she can start verbalizing her "rules. Don't know if that is considered behavioral therapy since it really hasn't done anything yet. I will see what he says. I really hate to subject her to the spinal tap,travel, etc when we can get IVIG locally but I feel like anything to further the cause. I will see what he says.
  6. It is always great to read the success stories. Thanks for sharing.
  7. Thanks for the thoughts. We did start the steroids and I knew from experience her behavior could get worse with the steroid I just did not expect the OCD to get get worse. I have always done what you said- if it is working stay the course. Strep is everywhere down here and it makes me really nervous to change her antibiotic, especially while on a steroid. I am going to go back on the cephalosporin and alert Dr. L. Thanks again.
  8. My daughter 6, is a classic presentation. Four weeks ago she had sudden onset separation anxiety, OCD, a tic, and then strep confirmed by her pediatrician. Placed on a cephalosporin and symptoms decreased almost 80% by 7 days. We flew to see Dr. L after she had been on the antibiotic for three weeks and at that point her symptoms had decreased down to 10%. She once again confirmed the diagnosis and recommended a month of steroids to see if we could "erase" the memory of the immune system and also placed her on clindamycin for a month to kill staph. She said a lot of kids get infected with staph infections after the initial strep infection and flare again. We came home and a week later started the clinda. We are four days in and I can already see her OCD is getting worse. She was doing so well on cefdinir. I also have her on a good probiotic. I am very tempted to stop the clinda and go back to the cephalosporin. I have made an appoint with the infectious disease doctor her brothers see (they have PANDAS too) to discuss all this, but wanted to see if anyone had any thoughts or if they had see this happen.
  9. My son was 8 and I explained to him that when we are sick your body makes soldiers to fight infection. Your soldiers have just gotten confused and are trying to attack your brain and that is why it is making you do these things. He looked at me with such relief and said, "wow, that is great. I just thought I was a bad kid.". I then explained that all the doctor's visits, medications, etc were just to fix the soldiers and to help his body not make so many. Even his friends who take ADHD Meds when they come over say "oh yeah, His meds are for his soldiers". Pretty basic, but it worked.
  10. ###### hath no fury like a PANDAS parent. If BCH had any idea they would retreat now.
  11. Took her in today and sure enough strep test was positive. She was shocked. I burst into tears. I knew it was coming but the conformation was just too much. I just told her, it was not that I did not know what to do but that the whole path is such a struggle. My daughter has no strep symptoms except OCD off the charts. Our pediatrician was great and gave everyone a cephalosporin for 10 days just in case the boys were exposed. I was able to get an appointment with Latimer early October just to get the "stamp" of approval for diagnostic purposes because the doctors here are good but still are timid to give a diagnosis. It will be interesting to see what she says. My guess is antibiotics and tonsils out but we will see. I spoke with my immunologist who has left her practice but hopes to start an immunology practice in the next 4-6 weeks and plans to focus on PANDAS as one of her specialities. I will definitely get the word out when she opens her doors. She assured me if we needed IVIG at some point we could get it in Charlotte but to just travel to DC to get Latimer's opinion. (And her office notes for insurance purposes/documentation). My husband laughed tonight and said he promised never to doubt me again. I think he knows how consumed I get with this disease and thinks if he can just stay in the denial phase it will all go away. I am sure if he ever worried I would be really scared. I know we will get through this, I will just pull up my boot straps and fight. It still sucks though.
  12. I will give you the cliff note version. My older two sons have both been diagnosed with PANDAS and have been through the ringer. PEX and IVIG for one and IVIG for the second. Interesting though, their disease presented more with hyperactivity, sleep disturbances, mood swings, tics, and sleep disturbances. They are both doing well now. My oldest has not had symptoms in two years (he was very severe) and my 8 year old is finally almost back to baseline (he was caught much earlier). My daughter, 6, started kindergarden and right around the beginning of school I noticed some anxiety and a hugging ritual. She has had some separation anxiety, ramped up OCD, and now just yesterday started touching things two times. I know this disease can have a 40% sibling rate, but come on! Have we not been through enough! I made an appointment with a behavioral psychologist who has experience with the disease to get documentation and we have an appointment with her pediatrician tomorrow. She is VERY early. I do not think a non-PANDAS parent would even notice her behavior. My husband is not even convinced, although it took my oldest to get to full chorea before he agreed it was not a behavior issue. He agrees though my maternal instinct has never been wrong before. She did have an ear infection (psuedomonas it turns out) that went for almost three months before we got it cured that may have been the catalyst. What is the current thought is you catch these kids this early? Antibiotics to shut antibody production down? antibiotics and steroids??? She is not severe enough for the NIMH study. Thanks for your thoughts. I know what to do when the kids get bad but what if you catch them this mild and early?
  13. My sister in law just returned from there and had nothing but positive reviews. She said the nurse was wonderful and her son tried to pull his IV out for two days and screamed, cried, bit, etc and she never lost her cool. Very professional and sweet to him the whole time. He was so disruptive Dr. Latimer was in there a lot and was hands on the whole time.
  14. I have a new appointment with Dr. Latimer in Bethesda at 2pm tomorrow that I forgot to cancel and the office was closed for the day when I realized it. I feel awful. I called and left a message but they may try to fill the spot in the morning. Just wanted to put it out there if anyone is close and might be able to call in the morning and fill the spot.
  15. My kids get 1500mg of amoxicillin (endocarditis prophylaxis dose for rheumatic protocol) one hour before teeth cleaning.
  16. 2gm/kg divided over 2 days. One child gets Gamanex and one Privigen. The child that gets Privigen has multiple allergies and I think Privigen is very pure. We see immunologist next week and I am going to ask more questions on why she uses one brand over another. We premedicate with a steroid taper which starts two days prior (40mg qd x 4d, 20mg qd x 2d, 10 mg qdx 2 days, then 5mg qd x 2 days. we also premedicate with Benedryl, tyelenol, and Pepcid one hour before infusion each day. We up fluids for several days before the infusion and have never had any side effects doing it this way.
  17. Great ideas. I knew my forum friends would help tell me exactly what to do. I will keep you posted.
  18. Wendy Mogel is a New York Times Times best selling author of The Blessing of A Skinned Knee and The Blessing of a B Minus who just came through Charlotte and came and spoke at two private schools. It was a big deal. Tickets were $150 a piece. I did not go but several people I know did. After living through PANDAS, I already know the blessings of a B minus and even a C minus. She made a very interesting reference in her talk. Now remember, I did not go and this is just what I heard. She was making a reference to how parents now have access to the internet and worry about everything above and beyond what they should. They hear about children being abducted and worry about their children even biking down the street. Their child gets strep and then starts washing their hands more often , and they worry their child will get PANDAS, and extremely rare and controversial disease. She apparently said it sort of jokingly, bad enough that a friend of one of of the other moms who kid is really debilitated now almost walked out. Now this is after I have spent hours trying to educate the teachers of Charlotte and this PhD comes in and makes an off the cuff statement that she has probably no experience about. There have been three children at this school alone, debilitated by this disease. There are probably more, they have just been put on meds and given the wrong diagnosis. I am not sure what I should do. Part of me thinks, hey she is spreading the word. She is speaking to hundreds of parents and teachers around the country that have never heard of PANDAS and bad press is better than no press. At least the name will get out. The other part of me thinks this is very irresponsible and offensive of her. If I had not searched the internet (just what she told these parents not to do) my kid would still be sick. Maybe when some parent mentions PANDAS to a teacher in the future they will remember this author compared it to as rare as getting abducted and I should pay no attention. I know the incidence of PANDAS is increasing so rapidly now that like it or not the non-believers will eventually convert but I just think this was a very poor example. She was lucky I was not in the crowd.
  19. I have never been a fan of the PANDAS acronym but removing autoimmune and changing it to acute does not work. For our situation it was completely autoimmune and in no way was acute. My son even had a positive ANA titer with each flare along with a rise in titers. We did PEX and have had several IVIGs to follow and went from a very dark, incapacitated state to now he is thriving in fourth grade. I would love to go head to head with any of these doctors any day to explain to me what happened to my son. We have a classic case, with the exception of the acute part. His presentation was waxing and waning, with each exacerbation worse than the one before. I think this is their attempt to save face. I think Singer is one opinion and not held up as high as it was in the past.
  20. I spoke to this reporter and she was VERY interested in this subject. She said she had just a few days to get this out and because it was the first article they were trying to keep it pretty basic. They were trying to keep it to the strep/OCD connection. I was actually pretty impressed she went into the level of detail she did. She said she was trying to talk to Dr. Cunningham and some others but ran out of time. She said she hope to follow-up with this and potentially do more on this in the future. She was fascinated.
  21. Dear Parents- We are all being proactive regarding concerns about the flu this season, but I also wanted to bring to your attention another health concern as we enter the fall. There is a student in your classroom who, several years ago, developed a rare, severe rheumatic fever complication from a strep throat infection. The child has been treated but is still susceptible to having a reoccurrence if exposed to the strep-A bacteria again. In an effort to protect this child and others in your class, if your child is diagnosed with strep, please inform Meghan or Linda immediately. Per school policy, if your child is diagnosed with strep throat, they must complete a full 24 hours of the antibiotic and be fever free without fever reducing medicine before returning to school. If you have questions regarding the symptoms of strep, please contact your pediatrician. Thank you for your cooperation with this matter. From, The CCDS Lower School Nurses This is the letter we send out every year to both my sons classrooms.
  22. We had the ADHD diagnosis twice by top professionals before we were diagnosed with PANDAS. Tried stimulants which just made it worse. Once we had full treatment of PANDAS (PEX and then IVIG a few times) all signs of ADHD are completely gone. In fact, on his report card this year all they could say is how "focused" he is!
  23. My son's IVIG was denied last fall and I fought BCBS of NC and won. He was severe with chorea and had PEX at Georgetown which they covered without question. He relapsed 4 months later and they paid for IVIG. Our immunologist wanted him to have one 8 weeks later and they denied it but then paid without us ever getting involved. He needed it again 5 months later and they denied it and sent me a letter that they did not cover IVIG for PANDAS because it was experimental. I guess they finally connected the dots. I had his two neurologists write letters and his immunologist. Included were the studies so far and the NIH statement. They also included that we had proof it worked from previous treatments, the only other options were chronic steroids which are not an option in a child, and that he could suffer debilitating long term effects if he was not treated. Instead of going through the typical appeal process (which I knew it would be too confusing for anyone down the chain) I had the neurologist call the medical director. She claimed she reviewed all denied claims and that she had never received info on our child. That was not true since we had faxed the info three different times. We refaxed the info and she finally approved it. We did switch to Cigna for the next year because I felt BCBS had become a nightmare. To have to go through the appeal which overall took 2 months was difficult. We have had his 4th IVIG on Cigna this year and will have one in the fall. Our neurologist wants to do it every 6 months for now. We may have to battle again but his medical chart speaks for itself that IVIG has worked. My son does get a rise in titers and a positive ANA with his flares which I am sure helps having positive labs. I think the fact that you have done it once and proves it has helped is good. Let me know if you need more info. I am sure I have a copy of the letter somewhere. I
  24. I know every family's journey is different but for us doing IVIG was the best thing we ever did. He is 10 and away for two weeks at summer camp. If you had told me two years ago he would be doing so well I would not have believed it. I can truly say he is back to normal. He has had 4 total IVIGs but the last one in April was done as a preventative treatment rather than due to symptoms. He will have another treatment in October to hopefully carry him through the winter. The IVIG has not only brought us to our current baseline but significantly improve his immune system. Helpful tips...hydrate, hydrate, and hydrate. The only time we had an issue was when he went in for his treatment dehydrated. He ended up with a migraine for 4 days. He always goes on a steroid taper for a week sround his treatment starting 2 days before. He is pre-medicated also with benadryl and pepcid. We also use emla cream before his IV just to prevent the pain of the stick. I know I have not posted much but that is because we are in a really good place. I know even if my son relapses and it comes back the IVIG has worked each time and each relapse is much less symptom wise. Best of luck!
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