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Agnes26

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Posts posted by Agnes26

  1. http://c.o0bg.com/rw/Boston/2011-2020/2014/03/25/BostonGlobe.com/HealthScience/Graphics/SCAN.pdf

     

     

    This may help explain some of the punting back and forth between CT and MA and why the court (though sadly, in my opinion) did what it did.

     

    it also reminds me why we worked our tail off to keep our daughter out of any hospital and why it is important to maintain your cool in the face of incompetent or ignorant "professionals".

    Absolutely. What a mess, and this poor girl is trapped in the middle.

  2. Thanks Agnes 26! I greatly appreciate your response.

     

    "She is wrong. Dr. M tapers. Our ped has had my daughter on Augmentin for more than a year per Dr. M's counsel. I would fight like crazy to keep your kiddo on antibiotics and at a minimum run myco titers."

     

    Given this information, I will call the office today to request that our Dr. consults with Dr. Murphy re: Augmentin, dosage length, and discontinuation. I wasn't confident the the Dr. was certain that stopping abruptly is what is done, as she had to go get her notes from the conference to find information.

     

     

    Another question: what would a maintenance dose of Augmentin be? (50 lb 5 year old) -and tapering dosage? I'd like to be informed prior to our next appt. Thanks!

     

    Dr. M had our DD on a pretty hefty dose of Augmentin 600 ES at 55 lb., but I can't tell you what would be right for your kiddo. As far as the taper would go, Dr. M's advice was to stay on the abx until symptoms remitted and then wait until summer break to begin scaling back on the dose. Dr. M has written a ton of medical papers. Have your doctor read those. There's also more info on PANDAS Network you can arm yourself with. http://pandasnetwork.org/treatments/antibiotics/

  3. This is my first post here. I have been in the midst of my DS's (5) first PANS exacerbation myself (started Nov. 11th, 2013) and I feel a strong connection to your story. As well as others that have posted here that have had PANDAS/PANS children that were triggered by the FLUMIST. Hopefully my post/reply helps you and others to not feel so alone and help you to gleen some insight into the healing that I have I've seen so far. I also have a question, but want to give you all a little history on us first!

     

    My DS 5, had the FLUMIST on 10/30/13. 3 days post mist he came down with a fever nausea, and slept a lot. At first I just thought it was viral infection. I gave him Ibuprofen, fluids and let him rest. A few days after his illness he started acting unusual. Stripping his clothes off, making growling noises and saying he felt like his skin was burning. He also was still complaining of nausea. For about a week he acted strange, very impulsive and regressing in his behavior. He started carrying his "tee tee"(baby blanket,) and mouthing everything in sight! I didn't make any connection at first with the flumist until on Nov. 12th, 2013 (his 5th b-day) the explosive exacerbation happened. He began full body tics, snorting, high pitched screaming, and having OCD "bad thoughts" and asking repetitive questions. Everything had to be his way, or he would have a complete melt down. He also had urinary frequency, aggressiveness, and could hardly get to sleep at night. He was completely off the wall in his behavior! I didn't sleep, or get out of my pajamas for 2 days. It was so very frightening to see my son become a completely different child overnight! In the middle of one of those sleepless nights, the"lightbulb" turned on, and I wondered if the flumist could have caused this? I searched the internet and made the connection here on ACN latitudes that yes, it could be an autoimmune/(inflammation in his basil ganglia) response to the mist and possibly PANDAS/PANS? I brought him to our pediatrician on Nov. 13th, explaining to her that I believed he was having a reaction to the flumist. To make a long story as short as I can, I sat there for 2 hours and still she couldn't explain to me what was happening. I was referred to a developmental pediatrician, then a psychiatrist who finally diagnosed him December 11th, 2013, with PANS, after 2 months of heartache! (In desperation, I live in MN, if I couldn't have gotten him help, I was very close to hopping on a plane to go to Chicago to see Dr. K.) My son has been on Augmentin chewables 1000 MG per day, since Dec. 11th. (400MG in the am, 200MG in afternoon, and 400MG at bedtime.) We have seen much improvement since going on the antibiotics. He is about 75% back to himself. We very much have been seeing the sawtooth pattern of healing, 2 steps forward one step back! Just when I feel he is doing better something will pop up again. He's also had two illnesses with fever and sore throat while on the antibiotics that caused "mini flares." He is on probiotics, and I am giving him Epsom salt baths. It's painfully SLOW! He has missed a lot of preschool. It feels like it will never end!

     

    Question for you all- I am very nervous and scared, his Dr. wants to discontinue his antibiotics this Friday (after about 9 weeks.) She wants to stop abruptly, no tapering of his antibiotics. Is this the way the "PANDAS Specialists"do it? She doesn't believe in long term antibiotics. My Dr. had also went to a conference in the fall of 2013 and thought that this was how Dr. Murphy does it. She hasn't made any mention of steroids, or IVIG. I doubt she will go beyond giving antibiotics? The only tests run were strep titers, which were normal, so she is calling this PANS. I have not ruled out going to see Dr. K., in the near future if need be, but don't really have a choice at this point but to follow her direction. I do feel very grateful that I got the antibiotics with out a positive connection to a STEP test/or titers, but I am very worried everything will go back to where it was in the beginning! Any advice?

     

    Thank you all very much for taking the time to read this and for all of the information posted on this website! It has been a source of comfort in a very weird and frightening time for me.

    She is wrong. Dr. M tapers. Our ped has had my daughter on Augmentin for more than a year per Dr. M's counsel. I would fight like crazy to keep your kiddo on antibiotics and at a minimum run myco titers.

  4. So has anyone done the clock test? DS (almost13), in the midst of a flare this week, drew spokes all over the clock face and numbers on the outside of his "circle." His numbers were unevenly spaced on the right hand side. He also was incorrect when asked to draw "ten after eleven." He's in seventh grade honors classes...

     

     

    Our doctor did for my daughter. Her clock had everything jammed on the right.

  5.  

    It strikes a cord with me. Definitely. My daughter had a month where she alternated between a catatonic-like state and being feral. It was so bad, we didn't leave the house. She stopped talking, eating, bathing. She would cry over everything and nothing. IVIG brought her out of it. Afterward, she seemed weak and almost infantile like. If we went anywhere, I had to push her in a stroller. She was 7 at the time. She also drew a clock like Susannah. Immunomodulating treatments (IVIG and steroids) definitely help her, but they never last.

     

    Pow Pow, if I want to rule this out, what should I do? Call Duke? I've already implored our local neuro. We'll see if I get anywhere with that.

    Get your doc to watch the grand round video!!

    It is meant for doctors anyway. Offer to pay him for an hour of his time to watch it!

     

    Excellent idea. Thank you. Tried to message you, but seems your mailbox is full?

  6. It strikes a cord with me. Definitely. My daughter had a month where she alternated between a catatonic-like state and being feral. It was so bad, we didn't leave the house. She stopped talking, eating, bathing. She would cry over everything and nothing. IVIG brought her out of it. Afterward, she seemed weak and almost infantile like. If we went anywhere, I had to push her in a stroller. She was 7 at the time. She also drew a clock like Susannah. Immunomodulating treatments (IVIG and steroids) definitely help her, but they never last.

     

    Pow Pow, if I want to rule this out, what should I do? Call Duke? I've already implored our local neuro. We'll see if I get anywhere with that.

  7. DD8 completed three weeks of intensive ERP at Rothman last fall with great results. She got the flu last spring, and after treating it medically, we have some residual OCD to knock out. I can't find anyone local, so back to Rothman we go.

     

    If you've done an intensive tune-up at Rothman, how many sessions did you do and how effective was it?

     

    Thanks!

  8. Glad I'm not the only one who doesn't understand the flipping back the pages. I looked for it with HD IVIG #1 and never quite got a handle on what it meant exactly or if we were experiencing it. DD seemed much better on day 1, but not as great on day 2. Then seemed pretty good for a while until we dropped her abx down to prophylactic dose, at which point she tanked. With HD IVIG #2 it was immediate, noticeable improvement. We're about two weeks out. I have no idea what accounts for the difference. It was a higher dose 2 g/kg over two days versus 1.5, she has been on tx dose of Augmentin for a year, and we're pumping her full of ibuprofen.

     

    Hang in there.

  9. On the flu mist. Yes! It's a live attenuated vaccine. My daughter's doctor has advised us to steer clear of people who have received the mist on the off chance that they shed the virus.

     

    Also, your son and my daughter sound very similar with the medical history: gerd, early infections, unexplained diarrhea, problems with clothing (turned out to be OCD and not control issues or sensory issues as previously diagnosed). Our ped and neuro agree that she probably had her onset at 2.5 and a relapse every Oct./Nov. until she was diagnosed at nearly 7. They got progressively worse. I would not wait and see per your doctor. I would find a doctor willing to help your son now.

  10. DD's tics are still bad - even worse sometimes than before the surgery. And now she is having an incredibly difficult time getting to sleep at night. It's taking her about 2 hours or longer every night to fall asleep. She gets upset that she's having trouble getting to sleep and then works hersulf up into a tailspin - frustration, crying, etc. DD is 9 and always sleeps in her own bed, but she's slept with us the last two nights just so we could help calm her down enough until she was able to doze off. This difficulty falling aleep is all new following the tonsillectomy. And she is very sensitive to any light at bedtime. She now can't stand the little bit of light that shines through her curtains from outside and says it prevents her from falling asleep. Once DD falls alseep, however, she stays asleep, thankfully - it's just getting her to actually doze off.

     

    The surgeon who removed DD's tonsils called us on Saturday to report that while they didn't find any staph or strep in the tonsils, H. Influenza did show up when they cultured them. Given this, he changed DD's antibiotic from Augmentin to Bactrim as he said should there be anything left post surgery, Augmentin doesn't work for H. Influenza, but Bactrim does. DD's tics are as bad as ever with the antibiotic change and the sleep issues have gotten worse since switching the antibiotic.

     

    Anyone else found H. Influenza with a culture of tonsils?

     

    Any other thougths? I feel like things are getting worse post surgery. DD is maybe less hyper than before surgery, but the tics are still bad (maybe even worse) and now we've got the sleep issues. And she seems more emotional and easy to cry.

     

    We don't see Dr. L until 10/29. Surgeon (who works with Dr. L on tonsillectomies for PANDAS kids) wants us to keep DD on the Bactrim until we see Dr. L.

     

    Thanks,

     

    momindc

     

    I have a long history with strep and was pretty sure I wasn't helping my DD's flares. I had my tonsils out this summer and they found H. Influenza in mine along with Non-group A Strep. My surgeon hit me with Clindamycin afterwards and my DD improved. I saw an ID shortly afterwards to make sure I dotted all my i's and crossed my t's, and he dismissed the H. Influenza as normal flora. I'm interested to hear what you find out from Dr. L.

  11. This is relating to the Cunningham test. Sydenham's chorea diagnosed kids tested higher for dopamine 1 and 2 autoantibodies vs normal kids. Kids with higher dopamine 2 tended to have correlatingly high ASO ( antistreptolysine O ) titers. Those titers are used to diagnose strep infection.

    This. Exactly. I got the gist. Just couldn't summarize.

     

    Our novel findings suggesting altered balance in the dopaminergic system may provide a new approach in understanding autoimmune neuropsychiatric disorders with possible implications for diagnosis and treatment.”

     

    Soon, please!

  12. Dr. K said his own blood work came back showing no infection...He wants to continue on abx for five more days, and then steroid burst if no improvement...When I pressed him for thoughts, he said with no infection, it is less likely that this episode is resulting from Pandas...although he added that he is not ruling it out because he has seen everything....I just don't know anymore. If he responds well to steroid, would that support the Pandas diagnosis? I would like some thoughts...Ty

    My DD was strep-triggered PANDAS. We have the infection and titer link. Had IVIG with Dr. K. She is on tx antibiotics and was at about 90 percent. She recently flared, I *think* due to hand foot and mouth at the beginning of the school year. Blood work (ASO, DNASE, immune panel) was all normal. Steroid course did provide a brief, but complete respite from symptoms. I have spoken with another PANDAS doctor who said that once the PANDAS/PANS horse is out of the barn, the flares can be strictly autoimmune. We're doing another IVIG with a local neuro. Hopefully.

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