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JPdad

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Posts posted by JPdad

  1. I've been meaning to note this for a while. I cannot run an actual statistical analysis of the forum but it seems that many of us have joined in January. I don't know what this means exactly.

    My theory is that most kids being born in January, most parents take them to annual physicals during which they get vaccines.

    Second theory has to do with the time of the year which is in the Northern hemisphere the time for most infections.

    third idea is that our kids get their flu vaccines in the fall and it takes a while for parents to find the forum.

    fourth theory is that this is just a coincidence.

     

    Obviously people dealing with an autoimmune disease like PANDAS would be most vulnerable during cold and flu season, with January being the height of that. I'm sure birth month has nothing to do with it. More people are born in July/August/September than any other months. January is only the 7th most common birth month.

  2. As someone above mentioned, as soon as you go the steroids rout one time, you are ineligible for this study.

     

    Also, I seem to recall from my conversations with them that they require you to stay there for a number of days and come back for repeat IVIG numerous times. Even though there wasn't an expense involved with it, the whole thing seemed like a massive time commitment to me that would have been impossible to meet with 2 working parents in the house.

  3. Hi

    I believe Streptococcus mutans is released when a new tooth comes in. Thus, strep titers rise, thus pandas increases.

     

     

    On a related note, I just read an article about a new "Smart Bomb" mouthwash that kills Strep. mutans and is supposed to prevent cavities. I think this would be a very beneficial thing for PANDAS kids. Now, if I only knew where to buy it.

     

    Smart Bomb mouthwash kills streptococcus mutans

    Wenyuan Shi, chair of the oral biology section of the UCLA School of Dentistry, has developed a "smart bomb" mouthwash that targets S. mutans, the bad strain of bacteria responsible for tooth decay, according to CBS Los Angeles.

     

    Researchers tested the formula on 12 participants and found those who rinsed with the mouthwash were free of the S. mutans strain for about four days after the treatment.

  4. Does anyone have experience with this vitamin? It caught my eye at the store today. DS6 has struggled for a year with ear infections. They have been his biggest trigger. This vitamin claims:

     

    "This irresistibly delicious natural cherry flavored chewable brings the power of K12 probiotics to the inner ear and throat; right where children need it most! Billions of live probiotic cells maintain a balanced ecology in the inner ear, mouth and throat. Reinforced with the cooling, calming, soothing activity of chamomile and mullein extracts, Inner Ear Support supplement offers complete probiotic support for maximum inner ear health."

     

    The active probiotics are:

    L. acidophilus (2 billion viable cells)

    S. salivarius K12 (1 billion viable cells)

     

    Nature Plus Vitamins

     

    Anyone have any opinions or experiences with these probiotics? I'm cautious to try it because some probiotics we've used in the past sparked a flare.

  5. We just went through this as well. Our ENT said he doesn't typically prescribe ABX before surgery, but gave up amoxicillin after. Dr T gave us a prescription for 10 days of Augmentin before. On the day of the surgery we requested the anestheologist do the IV ABX and that was no problem for them. Our son was not in a flare before the surgery and now 3 weeks post op he has been 100% fine.

  6. I don't believe it can cause PANDAS in a child who has never had an episode before, but who knows. As far as ABX goes, try speaking to the surgeon about it. It was standard practice in the past to provide abx before and after a T&A removal. Nowadays they seem to try to avoid abx wherever possible, but you can simply ask for IV abx on the day of the surgery and the anesthesologist should accommodate you.

  7. We are 10 days post T&A for our son today. He wasn't in a flare before the T&A and has remained baseline after it thus far. We did 10 days of abx pre and post surgery with IV abx during. Although the ENT doc didn't think his tonsils were that large upon initial examination, he discovered they were deeply pitted and had white spots on them once he did the surgery. We chose to go the T&A route because after the initial episode which was triggered by strep, he had a bunch of flares caused by ear infections (practically one a month for a year). We are hopeful that the prevention of ear infections plus proph. abx will keep him symptom free for long stretches, but I don't think there is any evidence that it is a 100% cure all.

  8. Hey JP Dad-

     

    My kids have been the same as yours. Went through life, both having strep once prior to pandas with NO issues. At ages 5.5 and 8.5 they both had strep (barely any symptoms but culture positive) and our pandas journey began. During the first two years after the triggering strep, it seemed anything set them off: cold, virus, illness exposure, etc. Fingers crossed, I feel we have found some footing with this illness. They both still flare with viral, but it is MUCH milder, and usually controlled with abx and advil for a week.

     

    Hoping you see a course of exacerbations getting milder with time.

     

    Yes, we do seem to have similar situations. The first time he got strep, he was so sick and miserable he would not even move around. He just laid on the couch for 3 or 4 days, but had no PANDAS symptoms. The second time he got strep, there was no visible illness at all until the tics and OCD came out of nowhere, which prompted a trip to the doctor who thankfully did a strep test. It all makes me think a certain strain of strep is responsible for this.

  9. Yes, you are. My son (now 6 but 4 at the time) had his acute episode post T&A d/t Strep infection prior to the surgery. Dr. Trifiletti recommends a pretty heavy abx protocol prior to and post T&A. If we had done this, perhaps it would not have taken the better part of a year to recover...and it was not a full recovery even at the year mark. I do not want to scare you, but taking further abx precautions would be my advice. Particularly if your kiddo has had so many infections - this would indicate that he/she has a chronic Strep, as my son did, living in the surgical site. Warm wishes, -Kath

     

    Dr. T is the one who put us on the Augmentin. DS is currently healthy and not flaring, but has had chronic ear infections for a year. Our ENT doc decided to do the T&A removal in addition to putting tubes in his ears. Hopefully this gets us on the right track.

  10. Our doctor finally decided to perform a T&A removal after 8+ recent ear infections and chronically swollen tonsils. Any advice from others who have had a PANDAS kid go through this procedure? Right now we got a script for 10 days of Augmentin before surgery and 10 days after, plus they are going to do IV abx during the surgery. Are we missing anything? Any other advice or recommendations for the recovery?

  11. Hi - both of my kids have been helped by ibuprofen.

     

    At times it has made their symptoms almost disappear, while at other times, it may just take the edge off. It has helped tics, OCD/anxiety, hyperness, aggressiveness etc.

     

    However, there have been times for both children where it hasn't seemed to help at all, although, this isn't the norm for us.

     

    Sometimes we get relief with it from the 1st dose and at other times we need to do a few days at full dosing before we see it helping.

     

    I don't think a lack of response to ibuprofen would indicate that it's not PANDAS. Perhaps, the inbuprofen just isn't a big enough gun wrt the inflammation.

     

    The only thing that helps us is getting rid of the infection. Ibuprofin and Predisone help a little, but it's not a big difference and just temporary.

  12. Mom was 29, Dad 30 for us.

     

    No history of any OCD, tourettes, etc.. in either side of the family. Dad had a bunch of ear infections as a kid, Mom had tonsilitis and tonsils removed when she was young. Mom's side of family did have some history of autoimmune diseases. (Chron's, rhum. arthritis, one nephew with Aspergers). Thus far neither of DS's two sisters (3 & 15) have any PANS symptoms.

  13. I just got a thorough tongue lashing from my pediatrician today about the course of treatments and lack of communications coming from the PANDAS Doc we consult with. Has anyone else had a similar difficulty? They basically questioned the prophylactic dose of antibiotic we are on, the lack of credentials of our expert, the validity of his practice, and the general lack of communication from him to them. I basically left the appointment feeling they wanted me to chose either them or the PANDAS doctor. Have any of you experienced this, and how did you handle it?

  14. This is probably a stupid (because of being obvious) question, but can a sibling's conjunctivitis cause an exacerbation in a PANDAS child?

     

    I'm asking because last night my DD9 started having PANDAS symptoms. She was cranky, throat clearing, anxious, extremely sensitive and perfectionistic, She started having fears of eating last night, and by this morning wouldn't eat. This morning I also saw her licking a piece of chocolate, but she didn't eat it, then she started spitting into a napkin.

     

    Her voice sounds scratchy but she won't admit to her throat being sore (if it is). She did not want me to look in her throat or take her to the doctor. I called the doctor and I'm waiting for a call back.

     

    Then, I got a call from school to pick up my DS7 because he has conjunctivitis (pinkeye).

     

    So, now I'm wondering if my son's pinkeye could be causing my daughter's symptoms. Has anyone ever had pinkeye cause an exacerbation?

     

    I can only speak from experience, but my son had pink eye 2 or 3 times, and it was one of the few illnesses that did not cause a flare in him. Ear infections, viral infections, strep, pneumonia all do, but pink eye did not.

  15. I have read all of the threads on coxsackie I can find, but am still confused. Can anyone comment on this please?

     

    Three of my kids just tested High for all coxsackie B titers and most coxsackie A.

     

    Coxsackie B 1:256 HIGH (normal is <1:8)

     

    Coxackie A IgG all were 1:1600 (normal is <1:100)

     

    Daughter was IgM negative for coxsackie A, yet two sons are both IgM positive.

     

    I have a phone consult with Dr T this morning. Are these viral loads high or very high? None of my kids have ever had any of the typical coxsackie symptoms.

     

    TIA.

     

    Colleen

     

    I'm curious to hear what Dr. T. had to say. All I can really add is that my son didn't have typical coxsackie symptoms either I suppose. He seemed to have a minor cold, then the PANDAS symptoms showed up. When he was negative for strep and ear infections, we ran blood tests and found the coxsackie. He's 8 weeks in right now and still recovering. The acyclovir helped, but it took the full 20 days to bring most of his symptoms down.

  16. Thanks for updating! Glad to hear you've had such improvement! Just started on Acyclovir today. We're also still on Zithromax and amox but she has plateaued or gotten worse again so I feel they are no longer working. I'm willing to give an antiviral a go at this point event though we can't tell if the Coxsackie is old or new. I was wondering what dosage your son is on? We are supposed to do two tsp. 2x day. Thanks-

     

    Sounds like you got the same dose as we did. For whatever reason, my son's symptoms were way worse, more frequent, and longer lasting with with coxsackie infection than they ever were in the past with strep or ear infections. We're about 8 weeks in at this point, and though he has improved quite a bit, he still isn't fully better yet.

  17. Hello, I was bumping this post in hopes of getting updates from those using Valtrex or Acyclovir. How are the kids doing so far? We are considering starting acyclovir for Coxsackie. Thanks!

     

    We got to about 80-85% better with 10 days of acyclovir, so the doc gave us 10 more days of it. I believe a 20 day course is a typical treatment for this medicine. Unfortunately we got an ear infection on top of the Coxsackie, so now we have both augmentin and acyclovir going at the same time.

  18. Heading to the doctor today with DD 15, second exacerbation in four weeks on second round of amoxicillin 875 mg. She had complete remission of symptoms with the first exacerbation after six days of amoxicillin though we treated her for ten.

     

    Here is what I am pushing for/asking her primary physician. I would appreciate your comments and suggestions as we are being squeezed in early this afternoon and I want to go in ready to go. He has seen PANDAS patients and open but not terribly knowledgeable:

     

     

    1. Should we try a new antibiotic?

     

    2. Should we move on to a pediatric neurologist locally in addition to Dr. M with whom we are currently in the intake process?

     

    3. High B12 in CBC....could this be indicative of some other underlying cause?

     

    4. Adopted from Russia, request test for TB?

     

    5. Being treated based on ASO titers....any other tests we should consider?

     

    Maybe ask about getting on a prophylactic abx like zithromax once she is better to try and head off future episodes.

  19. Can you tell us how B12 is supposed to help?

     

    I know it is not water soluble, unlike other vitamins, and remains in the body 3-5 years which makes deficiency rare. It is in most meats, so unless you are vegetarian, you should be getting enough in your diet. I'd like to hear more about how/why this helps???

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