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Found 22 results

  1. For those of you who have tried LDI for strep - what has been your post LDI experience - does your child still get strep infections? if yes, how do they react to these infections - do they get regular strep symptoms (minus flare)? Do you see their immune system fighting these infections? My worry is that if i get my child "sensitized" to strep, his body is going to ignore strep as an antigen - his defenses are going to be lowered as a result of the sensitization. Hope this makes sense.
  2. my 14 yr old dd - officially diagnosed with PANS ( combo of lyme exposure, & strep) we are in week 3 of treatment (we along with our provider suspected is was PANS)- daily regime - zithrox 250mg, minocyline 100mg, 1000mg D3, probiotic, herbals - TBB plus & OPC Our provider doesn't believe in steroids, so we are this course for now. We are new to the PANS/PANDAS ( 3 months to get to this diagnosis) - we've heard about other treatment options - just wanted to get others opinions thanks
  3. Question - my ds 14 is currently in treatment for PANS/PANDAS - we are in month 2 of recovery and making progress - we are visiting family for Christmas and one of her cousins is currently being treated for a strep throat infection. We are all supposed to be staying in the same house, what precautions should we be taking?? ( even thinking about staying in a separate house). My ds is currently taking 250mg Zithro and 200 mg Minocycline daily along with 1200 mmg NAC, 2000mg D. We want to avoid having a flare...
  4. Question - how long does it take to recover from PANS/PANDAS? I know every case is different, but just try to gauge where my dd is in her recovery . She just started 2nd month of treatment(abx &herbs) -headaches & light sensitivity have gone but still has hearing sensitivity & cognitive issues. We believe it was 7 months from her exposure to the time we started treatment....
  5. My son (16) has been having episodes of vomiting since he was 10. The episode last usually 3-4 days , he won't be able to have any food stay down and thrown it's like a switch.... it stops and he could eat whatever he wants. He tested positive for gluten allergy at 10 yr. He has had strep multiple times as a child and numerous ear infections. The reason I suspect PANDAS is that there seems to be a pattern of when the vomiting starts it is right after he complains of sore throats and achiness. His strep titer is elevated . I just had him at his doctor on Monday , she ran an overnight strep ,
  6. Hello everyone, my name is Arindam i have been suffering from OCD for last 8 years and always tried to find out what exactly causes the disorder and up untill now never really looked into the topic of PANDAS and how it could trigger the onset of OCD . But from what i have read i understand that PANDAS usually happens if children (ages upto 14) gets infected with group 'a' strep bacteria causing strep throats or scarlet fever which confuses their own autoimmune system to mistakenly treat a part of their brain (basal gangila) as foreign body and attacking it instead of the infection or along wi
  7. Hello - I live in Seattle, WA and am in the process of having my 12-year-old son diagnosed - he has all the symptoms of PANDAS including recurrent strep throat (at least 1 or 2 times per year since K and he is now in 7th grade.) We also have a family history of autoimmune issues and rheumatic fever. Strep was diagnosed last in October 2016 which we treated with antibiotics. When erratic behavior began at the end of Nov he had no symptoms of strep, thankfully we tested and surprisingly he tested positive for strep again. I'm specifically looking for: 1. PANDAS friendly physicians in the
  8. Hello, I'm looking for advice about my 5 year old daughter. We are trying to determine if she is having behavioral issues or if she could have PANDAS. As a little background, she has had recurrent throat infections (many times strep, sometimes not conclusive) for the past couple years. Her tonsils have been very enlarged for about a year, and she is having them removed next month. She has also been diagnosed with autoimmune hives that have covered her body (they do respond to antihistamines) for about a year. She also has a history of having behavioral reactions to artificial food dye, and
  9. Very interesting reading from AoA Contributing Editor Teresa Conrick: http://www.ageofautism.com/2016/12/cdc-denying-harmful-human-vaccine-consequences.html "A particularly notable finding in our study is the 900% increase in noninvasive pediatric vaccine-related isolates that was associated with serotypes 19A...serotype 19A frequently recovered from middle ear fluid specimens. ● It is noteworthy that serotype 19A—the original multidrug-resistant serotype reported from South Africa in 1978 [41]—emerged in the United States after the introduction of PCV7 in 2000, and many of these isol
  10. Hello, New to the forum and I have a 16 year old that was diagnosed with Lyme using FISH testing as well as PANDAS using the Cunningham Panel. He tested positive for four out of the 5 antibodies they look for in guiding the clinical diagnosis of PANDAS. He also had sudden onset OCD, separation anxiety, ADD and now as an adolescent depression. His symptoms morphed with each repeat strep infection (5 in total) and became somewhat compounded. As it is now, he is being treated by a psychiatrist for depression, ADD and OCD and until recently was taking Prosac and Vyvance. I took him o
  11. Hi, My son who is 3 year 2 months had a positive strep yesterday with absolutely no symptoms. He has been diagnosed with Autism recently, has excessive running and other ADD issues, has shown some regression. One thing I remember, early on when we were concerned he developed vocal tics suddenly, this coincided with him going to a different class, so we were could be stress induced autuistic reaction. His behaviours did seem to come on suddenly, I remember telling a psychologist like some body turned on a switch, he had some behaviours like hyperactivity. But we have lost our kid complete
  12. I'm hoping some of you can weigh in on this. Our 11 year old dd was first diagnosed in Oct 2014 following sudden and severe onset of separation anxiety and mild ticing. She has been on home tutoring the entire school year as we wait for her symptoms to improve. Initially the only positive test was for mycoplasma but as we visited additional docs and had more testing other issues emerged. Dr Ts testing revealed high Coxsakie B IgG titres and high IgE titres. Follow up testing revealed no allergies or parasites, the typical cause of elevated IgE. After 2 months of Zithromax, 1 month of Bia
  13. I have just been told my son likely has PANDAS. I knew nothing about it. After reading quite a bit I am putting pieces together. He was given amoxicillin the same day as his MMR when he was 18 months old, for strep, I think... still checking to be certain as it may have been for massive ear infections, if which he had many. Another piece of the family auto immune puzzle is that this same time he regressed into a world of autism. Yet another, I have an adult daughter 15 years older who is on the spectrum. But here is my reason for posting: does anyone know of or has anyone heard of a docu
  14. This is really good overview on Autoimmune Encephalities. My son was checked for the NR 1 receptor for NMDAR encephalities in November but it came back negative. However, I still think my son has a form of encephalities because of his high glutemate levels. So I am going to see if our doctor will check for GABA receptors that affect the levels of glutamate. There is lots of information in this article. This doctor talks about different things that can cause encephalities. http://www.ssi.dk/~/media/Indhold/DK%20-%20dansk/Diagnostik/DiagnostiskHaandbog/Autoimmune%20encephalitis%2044.ashx
  15. Hi Everyone, New to this forum and so glad I found it. I was really hoping you give me your "in the trenches" opinion of whether we are dealing with PANDAS/PANS and what a reoccurrence might look like. DD5 has always been a bit of a challenge in terms of characteristics she displayed (inflexibility, ridged, OCD tendencies, sensory issues, etc) but we always assumed it was just her personality. Last May we hit our breaking point in terms of being able to cope with her behaviours and routines and we sought the help of a child psychologist. Within the first session she said it sounds l
  16. DD is showing improvements (overcoming some OCD behaviors and doing some online school work), but liver enzymes are elevated. Could it be (wishing) that the antibiotics and antifungals have done their job and she just needs time to learn to be "normal"? I want to give her a break from the meds, but don't want to interfere with necessary treatment. I also don't want to do harm by continuing meds that might be damaging her liver... Have gotten no reply yet from the provider...
  17. My son had an IVIG treatment 2 weeks ago and now has strep. I just don't get it. He is homebound. Is he getting strep because someone in the family has been around a person that has strep. Are we bringing it home to him or is the IVIG lowering his immune system. He just had a penicillin shot yesterday morning and he woke up with a fever this morning. I took him into the doctor and he tested positive. Is it normal to get strep while doing monthly IVIG treatments? His vocal tic, headache and tremors are much worse. I just want this nightmare to go away.
  18. This last week my son caught strep throat again while on an antibiotic. The first time happened back in January. With some recent testing, some doctors are begining to suspect that my son had rheumatic fever when he was young. This testing is being done through some research studies and shows these antibodies have affected the heart. My son has also had testing in the past that showed elevated Anti- Dnase B Strep antibodies. Which I think this means he has had past infections in the past. I was told that it was not normal to be getting strep while on an antibiotic. So my son is going to gettin
  19. Hi this is my first post here, long time lurker. My DS has had a massive increase in OCD, Tics (especially shouting out and compulsive apologizing). His brother had a sore throat fever and when we tested at the ped he was positive for strep. My DS is under Dr Latimer's care but we are not sure how to counter the effects of strep in the house. This is the worst flare I've seen since he was diagnosed 2 years ago! Really need some help if anyone has insight! Thanks!
  20. Hello, We are hoping to find a doctor in the Midwest area who can offer extensive testing to treat our son’s symptoms. We would like a doctor not afraid to try a long course of antibiotics, as we suspect it may be related to a case of strep. A brief history; two years ago our, then, 13 year old son suddenly started showing symptoms such as “soft” ticks (not jerking, but squirming, repetitive body movements such as turning his head with his eyes rolled up numerous times. When he sees us looking at him, he “snaps” out of it), he frequently reaches several times to grab things before ac
  21. Hi, I am 26 M. I am having eye twitching since i was 12yo .I used to have cold once every year but not as severe as the one i had 20 months back. Took over the counter medicine.No antibiotics.Stayed at home & Cold lasted for 3 days.On the 4th day i resumed work & started clearing my throat occasionally.I thought its just because of the mucus.But in a week or so it matured into throat grunting. I also consulted 2 neurologists and i told them about the infection,they said 'it doesn't matter'. Since it was a sudden onset of Vocal Tics after infection, i am considering strep. Can
  22. I am looking for advice re: PANS and an exacerbation of PANS symptoms in my child. I had strep throat recently and although my son did not get the infection he developed some of the typical PANS symptoms and is clearly having a flare up. When my son has a strep infection we know to treat with 4-6 weeks of antibiotics however we do not know what to do when he is exposed to strep but is not personally ill with the infection. Wondering what has worked for others? We have started him on a course of antibiotics and have noticed dramatic improvements although we do not know if we should do the f
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