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laura s

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Everything posted by laura s

  1. FYI, I took azithromycin these past 3 days and each time I took a 250mg tablet, I started severe cramping and bowel problems - within 2 hours after taking it! Horrible, imagine your worst monthly cycle - cramps like that! Just a warning for you who may have kids who can't talk and tell you how they feel after taking this med. (like my son). I can't imagine how he made it through the school day if he felt like I felt. Laura
  2. My son is 10 and he is on Azithromycin 250 mg 2x day plus Augmentin 1000 mg 2x day for about 3 months now. He is doing really great. He gets a big dose of probiotics every night... alternating UltraFlora and VSL. Dr. T. says one antibiotic kills strep, the other slows it down (from multiplying) something like that.
  3. We suspected that my daughter (3) was the carrier and did a rx for penicillin. After the 3rd day, she started vomiting so I waited for that day's dose. Later she was better so I gave her a dose of penicillin. That night she had raging fever, sweating and smelled like "strep". Her throat culture was negative before I started the penicillin but I did not know that yet. Her titers came back normal but they said she has staph bacteria ?? but not concerned about it. Just a coincidence she got sick on penicillin or is did it stir up strep hiding. Thanks. Laura
  4. So we hear about strep hiding in tonsils, gut and other places. Could strep be hiding in ears, thus causing hypersensitive hearing? I think I remember in Saving Sammy, Beth said Sammy covered his ears. There has to be something with fear, anxiety, hypersensitivity and the EARS! My son covers his ears all the time - seems mostly out of fear. Has anyone tried ear ointments/oils/antibiotic drops or anything for ears? Thanks Laura
  5. So if your child tests positive for band 41 =IGG and IGM, plus they have the ocd, tics, meltdowns... sounds like my kid! Which TLR test and which drug..... sign us up!!!!!!!!!!!! Thank you for your constant research and updates. Laura
  6. Does anyone know if their kids can feel the "exorcist" tantrum coming on? Can they warn you that it is about to happen? Someone said Dr. T. said it is a chemical being released causing these episodes. Does anyone know what chemical? Thank you for any info. Laura
  7. The "exorcist syndrome"... did Dr T say which chemicals are released? norepinephrine??? Any other way to stop this other than antibiotics / or big pharma drugs? Our son gets these too. Used to be several times a day, now it is occasionally since antibiotics, but just horrific! Sort of look like seizures! Laura
  8. I don't know how to start a poll but reading through past posts it seems like there are a lot of kids who got a tonsillectomy and we are curious how many it helped. Can we start one? Thanks. Laura
  9. One month on antibiotics, Azith 250mg 2xday and Augmentin 875mg 2xday. Really saw great improvements immediately starting these antibiotics. Now nothing... plateau. I don't want to say "worse:, just seems unaffected by antibiotics now. I feel like we need to change it up again. (He's 10, non-verbal and still a mess) Thoughts? Try Sammy dose? Just be patient? I feel like a neurotic mom - scared to ask the doctor. THANK YOU. Laura
  10. It looks like he is itching inside his body. Like he can't scratch deep enough. Legs, arms, chest, ear. It was really really bad before we started antibiotics. Thanks. Laura
  12. The cluster meaning, same neighborhood, same area...they probably all have the same pediatrician who just keeps "grabbin' and stabbin'" them with vaccines!!
  13. My non-verbal son acts like he just broke his leg when he only bumped it. One little boo boo can throw him into a crying fit for 1/2 hour or so. I was wondering if this hypersensitivity to pain, light, sound (covering ears), etc. is related to PANDAS? Do any of your verbal kids complain about pain or sounds, etc.?? Thanks. Laura
  14. I don't want to jinx it either... My son has "autism" and every doctor we've seen said his raging meltdowns were just part of the "autism"- even Riley Children's Hospital said this..."better go get behavior therapy and Risperdal". Well, we recently stopped his medication (Seroquel and Prozac), then we did steroid burst... he got worse, then we tried Augmentin and he got a little better... stopped pounding and banging til his hands bled, then we started Azithromycin 250 2xday and he stopped crying and no raging meltdowns!!!! He still has a temper because he gets frustrated he can't talk but he is not attacking us or raging for 45 minutes anymore. He is happier and not crying all the time. I pray this lasts!!!!!!!! Thank you PANDAS group and Dr. K and Dr. T. Laura
  15. Do any of your kids have raging tantrums or crying spells? If we get off Seroquel and Prozac what would you recommend? Namenda? Will antibiotics stop this if it is PANDAS? Thanks Laura
  16. Is that why he is worse than before we started the steroids? He was on antibiotics for 3 days Azithromax 250mg by his primary care physician for serious case of eczema. Then we went to see Dr. K, he said stop the Azithromax and do steroid burst for 5 days, then wait a week to update him. It has been 5 days since we stopped the steroid burst. He is raging more, sleeping less, very intense, clawing at his skin and his school even called to see why the sudden changes... what happened? He is just a mess this week, so disruptive and scary I kept him home from school today. Laura
  17. Thank you all for great questions. I will look back to see if he or anyone else had strep when Jeremy started his Rages/OCD. I have 3 younger children who I should get swabbed. Dr. K wrote the script. I found him after googling and found this group. I live close to Chicago. I didn't pick up on the other dr's names but I will go anywhere and try anyone who can help my son. Thank you! Laura
  18. I just finished Saving Sammy. I would love to see what long term high dose antibiotics would do for Jeremy but so far, no one has prescribed them. Our DAN doctor -like most autism doctors try to avoid antibiotics because these kids usually have chronic yeast infections. The other specialists think it is just behavior. That is the problem with already having an autism diagnosis. Everybody acts like this behavior is to be expected and accepted. I don't know if and when Dr. K. will put him on antibiotics. We are supposed to update him on our steroid burst results next week. Thanks again! Laura
  19. He was on antibiotics many times before his first birthday 2 x were for strep the other times for chronic ear infections. We usually used amoxicillin. Dr. K. said it is either "classic autism" or PANDAS. He is not sure yet. We just know he was fine til 20 months old then completely became "autistic" then 6 years later he became a raging, crying, ocd mess this time labeled "autistic kid who needs risperdal and behavior management". I just can't accept that. Thank you for your prayers. Laura
  20. When he was 1 year old he had strep 2x per throat culture and put on antibiotics for 1 week course. He was sick a lot his first year of life. Then he regressed, stop talking and interacting and was diagnosed and labeled "autistic" at 20 months old. The titers and lyme tests were just part of a DAN workup 3 years ago but nobody put him on any medications for the high titers. Ibuprofen is our life saver. He is also on Seroquel for sleep 100mg and Prozac 5mg in am. We have tried every "autism" treatment possible. The ocd just has taken over. I can no longer call it a stim like I did for years. Yes, he also now has involuntary movements - jerks, flinches, grunts, tightens up. These are really bad right now. He can't even walk without jerking and stiffening. I thought it was that td (tardive...??) from the Seroquel but the doctor doesn't think so. Dr. K has not put him on antibiotics yet. We just did the steroid burst last week. (no positive changes yet) Thank you for your thoughts and input. Laura
  21. It was a Serology test. Blood Immunology tests. Laura
  22. My son regressed into “autism” at 20 months old…here we are 8 years later wondering if he has PANDAS and how long has he had it. He had strep 2x before he “shut down” and lost all words and eye contact, etc. He has had strange compulsions but everybody always said it was just “stimming”. Three years ago, age 7, he had high strep titers and the DAN doctor said he may have PANDAS but only put him on herbs. Did not seem too concerned about it. His viral titers and lyme’s were high too. One year after that, he got really bad, raging, crying, tantrums, more withdrawn. I had him tested for a brain tumor he was so different. MRI, EEG, full gastric workup, etc. Everything was negative. Just "behavioral problems from his autism" they said. He now “stims” all day –bangs, pounds and cries and melts down with raging tantrums, plus now he looks different… He has body grimaces and looks like his muscles are cramping up, jerking, etc. He only has a dozen words so I really don’t know what he feels or fears. I am so confused and scared. We just did a 5 day burst with Dr. K. My son is worse from that. Dr K said just wait at least a week and see. My son is just spiraling downhill. Any thoughts on “autism” connection? or why worse on steroids? thanks
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