Tattoomom

I hope you're right!!! My dd has always taken Omega 3's

Good advice!! Thanks! Honestly, every kid is different, and I have no experience with zith; our abx of choice and efficacy was Augmentin, and in the end, our DS was on that for almost 2 years, straight! Basically, I would let your DD's behavioral response be your guide. She's young, and from what I can tell, you seem to think you've successfully addressed her active infections. But if/when you step down to lower dosing she seems to take a step back or regress, then I would go back to full dose again and stick with that again for another 3 or 4 weeks. Basically, you want to see her continue to gain/regain developmental ground, with the help of her therapies, consistently, even if those gains are subtle and perhaps less dramatic than they may have appeared when you first introduced the abx. Keep a journal. But if she stalls out or regresses, then that may be evidence of a continuing auto-immune fight on her part. At which point full dose abx or potentially other interventions may be beneficial.

She's been on Amoxicillin for almost a month (3 weeks and a couple days) straight. Do you still think she needs 30 days straight of Zith or would 2 weeks straight be enough? At the IOCDF conference just a week ago now, Swedo volunteered that she herself would support a 3 to 4-week course of abx for these kids now, so I have to agree with LLM; push for at least 30 days of full dose abx. Kiera had a great idea to pull some of the seminal paperwork and take it with you to the ped visit; hopefully, that will help convince the doc that somewhat more aggressive treatment tends to yield more favorable results. Good luck!

I think I answered your question, but to my knowledge, her sinuses are fine now. It's hard to tell since she's not quite 4 years old yet and her language is delayed, but she doesn't complain of headaches or grab her eyes anymore. That's amazing about your son! I'm so glad you got him on abx!!

Yes to language problems. Speech is fine, but she has trouble processing information and has Pragmatic Speech and Processing Delays. She did have a killer sinus infection and has had strep, but no ear infections.

How long should I push for the daily abx? Is once a week Zith typical?

She's been on Amoxicillin 400mg 2x's daily. Ped wants to switch her to Zithromax, full course dose for 2 weeks, then maintenance dose once a week indefinitely. Does that sound like enough? Once a week?! She's never had Zithromax before, so we'll see how that goes...

DD (almost 4) was recently diagnosed with Pragmatic Speech & Processing Delay. She's also immature emotionally. She's in ST/OT and seeing a counselor who also thinks she has PTSD from her past medical history. We didn't put 2 & 2 together until she got a UTI and was put on antibiotics- she seemed to "wake up" and her issues went from 90% to 50% so there's a reason why antibiotics help! Would PANDAS/PANS cause developmental delays? Before the abx we were starting to think she might have high functioning autism, but it's not consistent. Some days she's sharp as a knife and other days she's foggy brained. It's confusing! We're on the waiting list for a Developmental Ped.

To my knowledge, yes. She's not complaining (headaches, covering eyes, watery eyes) anymore.

What does it mean when our child is exposed to someone with a fever and then has a flare up just from the exposure? Example: DD played with a friend outside. That same night, her friend started fevering. The very next day, my dd was a mess (SCREAMING, RAGING, CRYING, MELTING DOWN over EVERYTHING), then last night my dd got the fever. I realized the symptoms started just from exposure. Is that typical? Edited to add: I took her in when she developed the fever and rapid strep was negative. I assumed it would be since she's on Amoxicillin daily.

So you both said PANS. Why PANS and not PANDAS? Also, I'm searching high and low for someone qualified to help. We're in Jacksonville, Fl.

Here's the link to my last post- http://www.latitudes.org/forums/index.php?showtopic=18069 Basically, our dd (almost 4) has been dealing with MAJOR MELTDOWNS for the past year. It all started around the same time she had a sinus infection that wouldn't go away. Even after rounds of abx, CT scan still showed sinus problems. During this time, she also regressed in cognitive skills and seemed to have "foggy brain." She's been diagnosed with Pragmatic Speech delay and processing disorder. She sees a ST once a week and recently started OT. I've been concerned her behaviors may even be autism, but the specialists don't seem to think so. She is on a waiting list for a Developmental Pediatrician. However, when she got a UTI and got on abx, her language skills immersed and she seemed to wake up! Then went off, only to get strep throat 2 days later. More abx= more improvement. May concerns are--- ~DAILY MELTDOWNS (last anywhere from 10 mins-1 hour) and can happen MULITPLE times a day. She has no control during these episodes and screams bloody murder. We've tried everything to calm her down and nothing works. She looks so out-of-control, she even has body shakes, like a nervous breakdown. ***After the episode, she's sweet as pie, almost relieved. It's bizarre!*** ~ANXIETY- She bites her fingernails to the quick. She's very stressed out. Always seems tense. ~SPACEY/FOGGY BRAIN- Forgetfulness. She has trouble following simple instructions (go put the book on the bottom shelf) ~REGRESSION- Seems to forget colors, shapes and numbers ~TROUBLE POTTY TRAINING- She's almost 4 and still wears pull-ups most of the time We're on daily Amoxicillin 400mg/ 2 x's a day. It helps and I know this because when she goes off, her behavior deteriorates. But it's not a cure all. She still has bad days. Is that to be expected? Does this sound like PANDAS? Blood work was done and was all normal. Ped still thinks is worth it to continue abx, but I'm not sure she's on enough?

Thank you so much for your reply! I needed to hear that these symptoms can be PANDAS.

All 3 kids have had strep titers done and they were all normal. When you say low IgG, is it a specific test or are you just speaking of the Immunoglobulin panel? What type of immune system problems does your son have? Does your child need IVIG?

How low is the ANC? Lymphocytes and Neutrophils are both white blood cells. Lymphocytes typically elevate in response to viral infections and Nuutrophils fight bacteria. It's normal when one's low, for the other to bump up and get high, as to make up for the one that's low. Make sense? Example: The WBC needs to be 100% so if the neuts are only 15%, and monocytes are 35%, then the lymphocytes will bump up to 50% to make up the difference. My daughter had Autoimmune Neutropenia, where she had an antibody killing off her neutrophils. Her ANC would be zero sometimes! Her lymophocytes were always high!

I posted here years ago about my son, who started ticcing at age 5, after a bout with Mycoplasma. His Psychiatrist said he has a mild case of Tourettes, but antibiotics really help him when he has a flare up of tics so it's hard to say. He also takes Intuniv and Zoloft and is doing quite well. Back in November of 2010, his younger sister started burping constantly and we thought it might be a tic but took her to the doctor in case it was acid reflux or something of that nature. To our surprise, she tested positive for Strep throat! Along with some OCD's (she has to burp 148 times before she falls asleep), she won't step on yellow lines, she's obsessed with time, she picks her fingers around the cuticles until they are bleeding and down to the meat) and horrible nighttime regression. She was diagnosed with PANDAS due to symptoms. Her blood work was all normal. My 3rd child is who I'm concerned about..... She had Autoimmune Neutropenia from 7 months old- 3 1/2. She's almost 4 now. During this time. she's endured weekly blood draws, weekly injections at home, countless ER visits, hospitalizations, a bone marrow biopsy, etc... At 2 1/2 she started having HORRIBLE TEMPER TANTRUMS. Way beyond normal for a toddler. She would scream at the top of her lungs. Sometimes we would know why, sometimes we had no idea. Sometimes she would wake up this way in the morning. She would keep us up at night screaming, fighting sleep. She's very hard to console. Most days, she seemed almost in a fog, almost spacey. We noticed her language development slowing and some regression with things she once knew (like colors and shapes) She has been very difficult to potty train. I was very worried and concerned she may have autism. And then she got a UTI. And was given Amoxicillin. WOW! Ironically, she seemed to perk up. She was chatting with us up a storm. Her personality came out and she seemed much calmer. The entire family noticed the change in her on the antibiotic!! Already having PANDAS kids, we spoke to the Pediatrician immediately about the change we saw. She finished her Amoxicillin and 2 days later, had strep! 2 days after a 10 day course of Amoxicillin! So she went back on for another 10 days and we ALL noticed the downward spiral when she went off the abx. So the Ped. agreed to do a trial of 30 days of Amoxicillin. Does this sound like PANDAS? Can PANDAS cause autistic like symptoms? (foggy brain, daily tantrums/fits, regression, speech delay) Obviously, for some reason the Amoxicillin helps her! She recently started seeing a Psychologist and she thinks she has PTSD from her past medical history. While I don't discount that, I asked about PANDAS since it's already in the family and she didn't even know what it was EDITED TO ADD: I left out a key important part of this puzzle! She was diagnosed with a sinus infection at 2 1/2 that persisted despite antibiotics. She had a CAT scan to confirm the sinus infection, so we know for sure she had one. Anyway, coincidentally, that's when all of her tantrums/regression/spacey/foggy weird behavior started! We even had her hearing checked because she acted like she didn't hear us when we spoke to her. We finally got the sinus under control, but the ENT did say if she gets more infections, he'd recommend having her tonsils out. She recently started speech and was diagnosed with pragmatic speech and processing delay. And the ANXIETY. My gosh. She has no finger nails left.

DD was on Amoxicillin 500 MG twice a day. She's taken it before with no problems but on day 7 of this round, she broke out in itchy hives! We had to stop the Amoxicillin. She is on day 2 of hives but Benadryl is helping. We've already tried Zithromax but the Amoxicillin seems to help her symptoms so much better than Zith. Now what do we do??! No more -cillins

She thinks it's strep hiding somewhere in the body. My daughter has had several positive strep infections over the past year. She has me giving the ABX with the GSE, which is 2-3 hours away from the Charcoa;/ I think I need to have another consult with he about the once a week Zith. I just don't think it's enough and you made a good point about creating resistance.

So we got my daughter's strep titers back, and just like my son's, they were negative. But since she responded so well to 10 days of Amoxicillin, her Pediatrician feels certain this is PANDAS. The Ped. prescribed Zithromax for long term use, but only once a day, one day a week. My daughter weighs 59 pounds and is taking 7.5 ML of Zith liquid suspension, every Sunday morning for the next 6 moths. Does this sound routine? She also has us doing the Biofilm Protocol for 30 days. We started that today. Step 1- 2 tsp. Apple Cider Vinegar (gave with a chaser of OJ) Step 2- 30-60 mins later- 1 Capsule Grapefruit Seed Extract Step 3- 2-3 hours later- 1 capsule Activated Charcoal Step 4- Probiotics at bedtime

39 reviews and no replies? Does anyone have any insight on staph in the throat?

No! She never complained that her throat hurt at all. I can't remember if the doctor said it was red or not. The only thing she had along with the burping was she felt nauseous. Honestly, I took her in thinking it was acid reflux. I never dreamed it was strep!

My daughter had a nose bleed 2 days ago. What would that mean?

The post about strep in the nose made me think of a new question for you all..... While my daughter has tested positive for strep, she has also tested positive for staph in her throat. It's not MRSA, just staph, and the culture always gives the antibiotic recommendation to treat it. After trying to treat it once, and re-testing, ANOTHER staph was there and ANOTHER antibiotic was recommended but the Pediatrician didn't feel comfortable trying to treat it again, for fear of creating a MRSA strain. Why does she keep staph in her throat?!

While my daughter has tested positive for strep, she has also tested positive for staph in her throat. It's not MRSA, just staph, and the culture always gives the antibiotic recommendation to treat it. After trying to treat it once, and re-testing, ANOTHER staph was there and ANOTHER antibiotic was recommended but the Pediatrician didn't feel comfortable trying to treat it again, for fear of creating a MRSA strain. Why does she keep staph in her throat?!

So I spoke to my son's Psychiatrist (the one who diagnosed him with Tourette's) about his younger sister's sudden onset of symptoms and she said, "Well, Tourette Syndrome runs in families." When I suggested PANDAS, she said, "Well, no matter what the cause, the treatment is the same." Meaning talk therapy mixed with psychiatry medications. While those things have helped my son, I do not agree with her that that's the correct way to treat PANDAS. Hoping the Pediatrician will be more helpful on Tuesday.