Tattoomom

The Developmental Ped here is a tool. Cocky and "know-it-all" but he's one of the only ones in town and the only one on my insurance so we had to suck it up. Thankfully, since she wasn't autistic, he doesn't want to see her until next year.

The Ped ran a ton of blood work and it all came back normal, but she had already received abx and the blood work was done a bit too late, I'm afraid. We cannot afford a phone consult ($400)

We had our daughter evaluated by a Dev Ped in late August, right before she turned 4 years old. We were concerned about her language delay and behaviors. She's been in speech therapy for about 6 months and even her SLP noticed a huge improvement with speech when she went on an antibiotic. Anyway, the Dev Ped tells me at the parent conference last night that PANDAS is not proven and he doesn't buy into it. No matter what I said about her improvement, he denied it had anything to do with antibiotics. She's at about a 2 1/2 year old level but turned 4 in September so any progress made he thinks is due to her moving out of the "terrible two's." Then came the immunization lecture! He could not believe I was ok with giving her antibiotics for PANDAS- something that doesn't exist- and not immunizing her. He said she had a way bigger chance of an abx reaction than she does a vax reaction. THEN he told me that he didn't think I was qualified to homeschool her with her delays. I could have cried. I am a mother of 4 and we've always homeschooled. I cannot imagine sending any of my children to school, especially HER! Clearly her immune system is not functioning properly and she's so anxious we resulted to putting her on Zoloft and Tenex. Not to mention her behavior problems. All I could think was who better to school her and be will her all day than her mother. Isn't there some kind of proof PANDAS is real? Also.... Her expressive and receptive language are both delayed. The kicker is, her Visual-Spatial Problem Solving was estimated to be at a 5 yo level 125% of her age, while her Functional Receptive Language was like a 2 1/2 yo, or 65% of her chronological age. The Dev Ped said he's never seen a child have that big of a gap and not have autism. Yet... she does NOT have autism! He said 99% of kids with test score numbers like her would be autistic, but she's not. She's the 1% who are deemed Developmentally Delayed and Communicatively Disordered because of her good social skills and lack of autistic stereotypies. That's a lot to swallow, but I am very thankful to be in that 1%. Wonder if it's PANDAS related???

Trying Augmentin (she's had Amoxicillin and Zith on and off since May) Pediatrician prescribed 600/5ML- taking 3 mls 2x daily for 14 days. I got 1 refill. Does that sound like a good dose? She's about 30 pounds. So far I'm not seeing any change on the Augmentin. We're on day 7.

It's hard to say when this all started, but my mommy gut says it has something to do with a chronic sinus infection she had back in February 2011... I don't think it was treated properly and never fully cleared, even though her symptoms went away. Summary of symptoms and antibiotic/drug usage: Neupogen being used for Autoimmune Neutropenia- confirmed by bone marrow biopsy 10/09. January 1st 2011- Cold/cough. Temp 100.4-100.9 (Strep throat in the house, siblings PANDAS flare) January 21st- 3rd DTaP January 30th- vomiting ANC on Neupogen was on average 4,000 in January February 8th 2011- Sinus Infection- Prescribed Augmentin February 10th- ANC was 736 March 2011- Saw ENT- ordered CT Scan of Sinuses- Prescribed Flonase ANC on Neupogen was on average 3,000 in March April 1st 2011- CT Scan- Mucosal thickening in both maxillary sinuses ANC on Neupogen was on average 3,000 in April May 2011- Developed a throat gulping tic Stopped usuing Neupogen this month From this point on, behavior worsened, language and speech regressed. Daily tantrums. October 11th 2011-Sore throat, won't eat or swallow. Didn't eat the entire week. Strep neg October 14th 2011- ANC 650 January 27th 2012- Fever 103.5 unknown cause Months pass and behavior is still horrible. She lost knowledge that she one had, like colors/shapes. Seems very spacey and foggy brained. Daily meltdowns and tantrums. March 20th 2012-Fever 101.6 unknown cause

April 27th 2012-UTI- Prescribed Amoxicillin- NOTICED HUGE IMPROVEMENT IN BEHAVIOR! May 9th 2012- Positive for strep, 2 days after stopping Amoxicillin for UTI (PANDAS sibling had flare of symptoms) NOTICED EVEN MORE IMPROVEMENT WITH MORE AMOXICILLIN!!!! June 6th & 7th 2012- Fever 103.6- Strep neg on Amoxicillin June 25th 2012- Amoxicillin refill July 9th 2012- Last day of Amoxicillin July 12th 2012- HORRIBLE RAGES, Won't sleep July 15th 2012- Amoxicillin Refill August 3rd 2012-Fever 102- strep neg August 9th 2012- Zithromax- EVEN MORE IMPROVEMENT!!! August 23rd 2012- Developmental Pediatrician evaluation- Developmentally delayed by about a year. Anxiety and tantrums observed in office. No autism. August 27th 2012- Zithromax refill- trying to take one dose every 2 days. Not going well. MAJOR ANXIETY/PANIC/OCD. FEARS OF ELEVATORS, BATHTUBS, PEOPLE, PLACES. Literally agoraphobic at times. Biting fingernails and toenails until they bleed. Chews skin on fingers to open sores. Anxiety and panic attacks often. August 14th 2012- Zoloft (1x daily) added by Psychiatrist September 14th 2012- Tenex (2 x daily) added by Psychiatrist So far, not seeing any improvement on Zoloft/Tenex.

Well, if you can't see the Zoloft or the Tenex doing anything . . . positive or negative . . . and her anxiety is as high as it ever was or worse (?), it makes me think she's either 1) fighting an active infection of some sort or 2) still dealing with the autoimmune fall-out from an infection. I know that there are some forms of strep that are resistant to zith in certain parts of the country. Is it the only abx you've tried? And you did see it work at some point? Sorry, I have trouble following all the histories on the forum. Have you tried anti-inflammatories, like ibuprofen? See if that makes any difference? Yeah, I get what you're saying and it makes perfect sense! To answer your question... we started off on Amoxicillin and switched to Zith. Saw improvements on both, but the good results seem to "tap out." Haven't consistently tried Ibu.

Those of you who see Dr. Tanya Murphy, can you give me an idea of how it works at her clinic? How long are the appointments? How often do you go? What does she do? Etc....

We are in Jacksonville, Fl. I know Dr. Murphy is down in south Florida (we're north) but when I called her office, they said we'd have to come in every 2 weeks and I just can't imagine how in the world we would be able to do that. We are a one income family with 4 kids. Money is extremely tight and we have no credit to rely on. Dr. T charges for phone consults, correct? Would they charge my Ped if I could convince her to call one of them? I am very interested in learning more about NIMH... can someone link me to how I can get started? I found it. She wouldn't qualify since she's recently begun CBT and placed on SSRI.

We are in Jacksonville, Fl. I know Dr. Murphy is down in south Florida (we're north) but when I called her office, they said we'd have to come in every 2 weeks and I just can't imagine how in the world we would be able to do that. We are a one income family with 4 kids. Money is extremely tight and we have no credit to rely on. Dr. T charges for phone consults, correct? Would they charge my Ped if I could convince her to call one of them? I am very interested in learning more about NIMH... can someone link me to how I can get started?

How did you know your child needed IVIG? What type of doctor orders/administers this? We've been on antibiotics off and on since May. Started on Amoxicillin and switched to Zithromycin. We've seen improvements, but nothing major and the improvements we see diminish when we stop antibiotics. Zoloft and Tenex have been added by the Psychiatrist, but aren't helping much. Maybe we aren't on the right antibiotic? Or maybe we haven't consistently stayed on long enough? DD was diagnosed PANDAS after her last strep infection in May, but I know it all started with a sinus infection in February 2011 so we're well over a year and a half into this nightmare. She's had anti strep and mycoplasma titers that were normal, but she fits the bill and clinically responds to abx. What now???? Edited to add... I asked the Ped for steroids but she didn't feel comfortable with that.

I share your concern re. the doctors deciding that a positive response to the more typical anxiety/TS meds could lead them to preclude PANDAS as a viable diagnosis, but most of the doctors actively practicing and researching PANDAS wouldn't be so short-sighted, I don't think. Dr. M regularly utilizes low-dose Zoloft in the full range of treatment options for the PANDAS kids she sees, and Tenex is now being used as a non-stimulant response to ADHD, only it's been repackaged under a different name: Intuniv. So doctors familiar with PANDAS and the myriad of comorbid behaviors, including anxiety and sometimes ADD/ADHD, would not be surprised to see that these meds may have some positive impact on our kids, at the right doses. I would suggest you keep an eye on your DD, and journal daily in terms of her behavior, triggers, anything outside the norm that might account for a change in her behavior, either positive or negative. If you have a bad day here or a bad day there, that's likely just part of the process. But if you see the bad days adding up again, and if she seems to consistently become somehow "more" of the anxious things you'd thought the Zoloft had initially set aside, her dose might be too high for her, and you might consider cutting it back . . . not out, but back. If you abruptly cease the med, that might cause an even greater negative response, but cutting it back, if too high a dose is causing the increased agitation, should result in improved behavior on her part within 24-48 hours of having reduced the dose. Otherwise, you might need to consider whether or not she might not need more medical interventions . . . that perhaps there's still an autoimmune response impacting her health and her behavior. What type of autoimmune response comes to mind? Her anxiety is HORRIBLE. I can't tell the Zoloft or Tenex are doing anything at all. I called the Pediatrician (the one who prescribes the abx) and I'm still waiting on a call back. Maybe the Zith isn't the right antibiotic???

http://www.hslda.org/laws/analysis/Pennsylvania.pdf http://www.elc-pa.org/pubs/downloads/english/oth-homeschooling%207-08.pdf

During this past year, we did try natural things... Calms Forte, GABA, Natural Calm, etc... but nothing helped. I am slightly worried that her response to the Zoloft and Tenex would leave the doctors to believe it's not PANDAS! HOWEVER, I may have spoke too soon.... today has been a bad day and you can't tell she's on anything! What's up with that??? One day she's great, the next day is awful. It's like one step forward and then regression

Clinically diagnosed 4 year old with PANDAS. On and off antibiotics since last strep infection in May. Longest duration of antibiotics has been 14 days straight of Zith. She'd get 10 days of Amoxicillin, stop, regress, get more, etc... Horrible, horrible anxiety, panic, some ocd and the worst temper tantrums/meltdowns you've ever seen in your entire life! Foggy/spacey all-the-time. Lost knowledge she once had, suddenly developmentally delayed. Language/processing disorder. You get the picture. And then...... we started seeing a Psychiatrist who added Zoloft (1 month ago) and Tenex (2 weeks ago) and we have a new child. She's HAPPY! She's calm. She has a sense of humor (before she didn't "get" jokes), she's alert and spot on. Her overall aura has changed. It's like she woke up from a horrible nightmare. She's till anxious and bites her fingernails, but she's not freaking out over everything. She's actually a joy to be around! Does it make sense that Zoloft and Tenex would help her so much? I mostly see that these drugs don't help PANDAS kids, so I'm a little confused. Would this make you re-think PANDAS? Why didn't the antibiotics help enough alone? Or do some kids just need the cocktail of drugs?

So, regression off the antibiotics is a typical response with PANDAS? Does this mean she hasn't been on them long enough? Or possibly not on the right one? Or not on the right dose? I'm so confused!! Thank you so much for all of your help!

How do you all keep it together? We don't even have an official PANDAS diagnosis, but it's the only thing that makes sense. Her screaming, anxiety, meltdowns and panic are tearing us all apart. I am so depressed. The stress in this house is so thick. She ruins all of our plans. We avoid people and places because if her. All the while she is suffering, we suffer, too. I worry my 12 year marriage won't survive this. We have 4 kids and we are all miserable!!!

She was just put on Tenex this week, so far so good. We saw ENT for the sinus infection. He recommended tonsillectomy. This was before all of this really hit hard.

Evidently, we have an Infectious Disease specialist here who knows of PANDAS. Do you think that would help me?

It is definitely NOT AUTISM. They said not even a toe in the pond. Unfortunately, we cannot travel. We are poor as dirt

DD (just turned 4) has been on antibiotics off and on since her last strep infection in May. We started off on Amoxicillin and switched to Zithromax. She started the Zith in August and we did 14 days straight and then tried to wean down but things quickly deteriorated. We know she has Pragmatic Speech & Processing Delay. She's also immature socially and emotionally. She's in ST and seeing a Psychiatrist who also thinks she has some PTSD from her past medical history of Autoimmune Neutropenia that she battled for almost 3 years. I've talked to her Psychiatrist indepthly about PANS/PANDAS and she's definitely not denying it, since we've seen such an improvement on antibiotics, and she's seen her MAJOR TANTRUMS, ANXIETY and OCD. 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! She was recently evaluated by a Developmental Pediatrician who deemed her to be developmentally delayed by about a year. 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. What we have learned, is when she goes OFF an antibiotic, she regresses! Her speech preogress is lost and she seems to lose everything she's gained. Is that typical????? The Pediatrician is wanting to get her down to a once a week dose, but it's just not cutting it. The Psychiatrist has her on Zoloft and Tenex. I'm still confused..... Does this sound like PANDAS????

My 11 year old would be PANS, my 8 year old PANDAS and my 3 year old PANS. We have tons of autoimmune in my family-- Type 1 diabetes, Fibromyalgia, Thyroid, Celiac, Autoimmune Neutropenia

Can you explain to me the process in getting in with Dr. Murphy? Is it just one appointment or a series of appointments?

It's already flavored cherry

OMG. Liquid Zith must taste awful. My 4 year old dd spits it out all over me and her. I bet only half is actually going down. It's a sticky mess and I'm losing my mind. She's supposed to take this for 2 weeks straight and then every Sunday. How am I supposed to do this?!