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dut

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Everything posted by dut

  1. Hello I was wondering if anyone can give me their opinion on the safety or otherwise of me receiving an MMR vaccine while breastfeeding my 9 month old son and any effects it may have. I'm aware that a study has shown that 56% of children tested following maternal immunisation with MMR had positive results but ( supposedly) only 1 child developed an infection. Not sure where these figures came from or size of study just figures quoted to me from a lactation nurse. I'm assuming that the assault on my 9 month old's system will be very different via breastmilk than it would be if he himself got the shot. I would normally not be getting vaccinated but need it for greencard process and am more wary than normal over vacs as our older daughter has just come through her first PANDAS episode. She isn't vaccinated and neither will our son be but hadn't counted on this being an issue but greencards won't be issued without full immunisations. I got titers done hoping I'd be immune but came back neg for measles. I'm hoping to do measles as standalone if possible. Any help would be very much appreciated, or if anyone knows a good greencard lawyer who might know a loophole :-) Thanks, Danuta
  2. excellent.. thank you
  3. Prophylaxis- strep or immunomodulatory/anti-inflammatory reasons. Hello. I was wondering if people who are using zithromax prophylactically are doing so to keep new strep infections at bay ( we're doing that- zith one day a week) or to keep symptoms in check. And for those using to keep symptoms in check, is it 'cos you feel it keeps down some low grade/resistant strep infection or because the immunomodulatry and anti-inflammatory effect is what is at work? What I'm trying to say is that if it's just the anti-inflammatory effect that works for some could we be using something that works for that just as well but doesn't wipe out gut flora or have maybe more serious ramifications. We have noticed with our daughter - PANDAS -bad episode that included some minor tics, lots of ocd, adha, oppositional, very emotional etc, that went from a peak of say 100% symptoms to baseline of say 2% symptoms after 14 days amoxi, that when she has her 1 day a week zith for keeping new strep at bay we see those last few minor symptoms disappear for a couple of days. Her culture is negative and her titers are low so we think she has maybe just some residual inflammation left that's leaving her with the last bits and maybe the zith is lowering this. We still want to be on zith for now but for those that may benefit from just anti-inflammatory effects could there be other safer options that would do the trick? dunno?
  4. Hello again.. also remembered this... a paper from National Institute of Mental Health looking at antibiotic prophylaxis for PANDAS mentions that quick antibiotic initiation may blunt strep titers... could account for low titers if you gt to the strep quickly... it's towards the end of the paper.. last page I think... http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf
  5. Our daughter did this too.. we had maybe 2 tops and 2 pairs of trousers... we're finally getting back into some more clothes. The only socks she would wear were diabetic socks or rather socks for diabetics :-) no seams at all, got them on the internet.
  6. Hello I can't comment about tics much but our 4 yr old daughter has just gotten over (nearly) her 1st episode of PANDAS, we believe. Her's was very strongly OCD with minor ticcing and lots of hyper/emotional behavior and funnily enough she was also eating a lot more. She had a positive strep culture but at the end of antibiotics had very low titers but we're still confident it was/is PANDAS as she is remitting so well after 14 days of amoxi. I would keep following the strep thing.. it takes a number of weeks for titers to rise after strep so I believe. Even though her titers were low 2 weeks ago she is still getting better.. so maybe some kids are more sensitive than others to even low titers or maybe some residual damage/inflammation remains that has to be repaired..and chemar on this forum offered us up another idea regarding cholinergic system. We're still very new to all this so I don't know much just thought i'd offer my penny's worth when I saw you mention the low titer thing and the eating more.... good luck with it...
  7. Hello Our daughter was on amoxicillin for 14 days (for strep/PANDAS). On day 10 she developed what looked like hives on her trunk, upper legs and inside top of arms. When the lumps went down they left red blotches which hives don't do normally .. well not on her anyway. Having researched it and speaking to our ped it could have been an allergic reaction but can also be something called a toxic rash. http://www.medscape.com/viewarticle/517335_2 I read somewhere, but can't find it now, that if it's a toxic rash it may not necessarily happen next time which may be important if your child needs penicillin in the future. You can get tested to rule out allergy I believe. Don't trust me on the future use bit.. check it out with your doctor but may be an important differentiation...
  8. Hello I'm new here too and trying to get used to the idea of a daughter with PANDAS.. so don't know much but did wonder if you had a positive on the Fifth's disease.. it couldn't be a scarlet fever rash from strep? dunno just a thought..
  9. thanks for taking the time to reply.. lots to read up on.. I've been googling like mad for the last couple of hours :-) just so much to follow up on and I don't feel we've seen the back of it yet.. few more "worry tricks" today. thanks again, I'm sure I'll be back with more questions... :-)
  10. I'd happily hear any thoughts that'll help us steer through all this.. dut
  11. Hello. I've been lurking here for a couple of weeks since our 4 year old daughter seemingly started with PANDAS and you have provided a wealth of info for us. We believe that what we have seen is PANDAS - sudden onset of OCD 5 weeks ago (with maybe some minor tics, grimacing and odd dancy moves that we only recognise now they're gone) one week later we had a positive strep culture at the pediatrician. She was started on 14 days of amoxicillin and 1 week in things were even worse, nearly constant "worry tricks" as we called them, lots of handwashing, very emotionally labile, hyper, inattentive, agitated and hardly our daughter at all as we know her. At the end of the 2nd week of amoxi she was well on the mend and now nearly 5 weeks after it all began she is back to her old self. Thing is - at the end of her amoxi course she was tested again for strep and also had ASO and Dnase titers done. I would have expected the titers to be on the way down (unfortunately didn't have them done when she was really bad) as she seems to be remitting so well even then but the titers were really low. ASO <25 Dnase <70 Does this seem really odd or should we just be pleasd that she seems to drop her antibodies so fast? Thank you for any info and thanks for all your posts. It was really important to me to be able to read all your posts on this forum as we watched our little girl falling apart in front of our eyes and to know that other people were going through this and that they were finding ways to cope and were able make things better for their children, so thanks again, Dut
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