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Everything posted by cdnmom

  1. michaeltamp, did you have an active infection? I've started them on the antiviral but am worried there is a medical reason I shouldnt. Both dd and ds have an active infection. I'm not sure if I should be letting the coxsackie run it's course.
  2. Hi everyone, I really need some advice at the moment. In crisis mode here. Ds7 and dd7 have coxsackie virus right now. They have not had a pans diagnosis as of yet but I have seen mild signs of Pans in the past. Older son is 10 and has Pans/lyme. I have sent my older son to my dad's house but he was exposed to ds7 during his most contagious period. So worried he is going to catch it. I have Valtrex at home (long story). My question is should I put them all on the Valtrex? I really don't know how much to give them and for how long I should have them on it. I know
  3. Can anyone please tell me what the treatment dose is for pandas kids with strep? And what abx? Thank you.
  4. Hi everyone, haven't been on this site for a long while. I will keep this short (pressed for time). Ds7 (no official pandas diagnosis - his brother 10 yrs old has pandas) had strep June 12. He was put on zith for 5 days, then amox for 10 days, then another 5 days of zith - regular strength regimen for strep. He finished abx, we swabbed him, results were negative. 2 days later he develops a fever and really bad sore throat. Took him in for another swab (pending results), doc gave me another 10 days amox (regular strength). I gave him 3 doses so far but his throat is worse today than it
  5. Nicklemama, thanks for making me feel a bit better. If I knew for sure it was a stomach bug (viral), I probably wouldn't panic so much but I'm terrified that it's bacteria. Ds has had 2 exacerbations, both triggered by bacteria - strep and myco p. I hope it's not e. coli or salmonala. I will definitely report to health dpt...kinda don't want to give the restaurant a heads up and give them a chance to "hide" their negligence but I don't want other people to get sick eating their food either - I'm caught in the middle. They are closed today (national holiday in Cda today). I am going to co
  6. Panicking here - my ds9 (pans) had a b-day party on Sat at my house...we ordered Italian food for a local restaurant. Early this morning 3 (out of 5) of my family members are throwing up. I called everyone who attended the party and found that 10 people (out of the 20) that were here are bed ridden and throwing up. I am panicking, from my understanding, food poisoning is usually bacterial and can be quite severe....my ds9 unfortunately is included in that number and is also throwing up and has moderate fever. I want to start an abx (he is not on any right now)....not sure if he can keep it
  7. Cobbiemommy, did your dd present with congestion along with the cough? My ds is ALWAYS congested (nasal)...I will definitely ask for the nasal swab...wondering if I can swab myself...my LLMD is in DC and I am from Canada so needless to say, it's not a hop, skip or jump away. Thanks all for the Myco P. IgG lesson....it all makes sense now. I will have to get the entire family re-checked, we all tested pos at the same time IgM. The testing for Myco is horrible in Canada - first off, they don't provide quantitative numbers, just a pos or neg and if you test pos for IgM, they will not run t
  8. There is a fb pandas group that was discussing this very issue this week. I have no personal experience with any of these allergy meds but folks on fb spoke about increased ocd and anxiety in their children, particularily when using Singulair...there was also mention of suicidal thoughts in a pandas child who was on Singulair....this is not the first time I have heard this. Many on this site have sucess with Quercitin, pepcid, zantac to help with seasonal allergies......you can try doing a search on seasonal allergies or allergies. I tried Quercitin with my ds8 last week but it caused a
  9. Thanks for the info. I tried Quercitin 2 weeks ago and after only 3 days on it his tics got worse. LLM, I know you've mentioned here before about quercitin possibly causing problems for people of Mediterranean heritage....my parents are from Portugal, which is considered to be part of the Mediterranean so idk if what you've researched applies to him. I've considered a pulmonoligist, just feel bad for the kid; so many doctors. I will try it and see what comes out of it....he's had it for such a long time. It is time for a new mattress anyway....his has been around for 10 yrs.
  10. My ds8 has had a chronic cough that comes and goes but has been with him for over a year. He gets it every morning, first thing for about 1/2 hr then it pretty much disappears the remainder of the day. Does anyone know what this could be? He tested pos for myco p IgM last Aug, was put on zith for a month...re-tested in Dec and his IgM was within normal range but IgG was still very high. Could this be the myco? Could it be asthma related? Also, another question about myco that I have never grasped. I know the IgM indicates a current infection...it's the IgG number that baffles me. Do
  11. I also want to add that ds is not on any abx at the moment. He was on prophylactic azithromycin 250mg every 3 days but it was also making his tics worse, and he can not tolerate probiotics so I took him off abx for a while; since the end of March. I have 20 day rx for augmentin and am itching to fill it, but a little stumped right now.
  12. Hi everyone, It's been a while since I've been on/posted on this forum. I've been reading up on seasonal allergies/pans symptoms because my ds8 has been going through a flare for the past week (tics). He has no sign of infection right now so I was wondering if it might be related to seasonal allergies (but no typical allergy symptoms either). I've been giving him 250mg a day of quercetin for 3 days but today his tics seem worse and it's raining so I thought he might be doing better today but that's not the case. Wondering what type of allergy testing is best. He is a bit congested
  13. welshfam, sorry, I just received this message...I've been a little out of touch with this forum for a few weeks....do you still need the list? Diane

  14. When my ds8 went through his last flare in Feb 2012 he had something that sounds similar to what your describe. His entire body would quickly jerk like someone was transmitting electricity through him. It would last a second, and when he was sleeping, it would continue all night, every few minutes. During the day I would see maybe 3/day. Thankfully this went away after about a week.
  15. Hi all - been a while since I've been on forum (computer broke down)....ds8 woke up this morning with a bit of a sore throat. Dd5 and I have been sick for just over a week now. Ds8 is on prophylactic abx. He had increased tics last night but tics back to normal all day today. Should I be increasing his abx to treatment dose right away or wait for symptoms? It becomes a bit tricky for me because he reacts to azithromycin so I am afraid if I increase the zith and his tics get worse (as they usually do), I won't know if the tic increase is because of the zith or the infection. I've been pon
  16. Thank you for all the great ideas.....I will definitely need to put a plan of action in place prior to getting there. Sounds like the kiddos will have fun.
  17. My kids are ok with crowds and noise....isn't there a big toy store that is in the "Home Alone - Lost in NY" movie too? Wonder if it's the same as FAO Schwartz? Wow, I thought there would have been a bit more for the kids.......I know the shopping is great but maybe next time if I go solo. We are bringing our own air mattresses, blankets, etc...no way would we sleep in hotel beds.....germ fest. Maybe we should just stop in NY for the day and head over to Washington for sleeping accommodations. I think we will look at going to a museum and the toy store for sure....and a quick visit to
  18. For those of you who live in New York city or have visited, please send suggestions.... We are from Canada and are going to see Debbie McCabe on Dec 10 but we will be staying in New York for 2 days prior....decided that we might as well try to make some sort of family vacation out of this and thought maybe there is a little more to do in NY. I've never been there but want to see BIG x-mas tree at Times Square and visit the large Toys R Us, and also the Statue of Liberty. DS8, DS5 and DD5 would appreciate any kid friendly things to see/do. Does anyone also have any suggestions as far
  19. Yes, your mom could have passed it along or you could have passed it to her....hard to tell. Did you test IGG or IGM positive?? If you are IGM positive (recent or current infection), you may be able to kick it out with a much shorter course of antibiotics, however, if your IGG is high, this would indicate chronic phase and might require a longer course of treatment. You are very fortunate that others in your family did not get it....4 of my family members tested positive for IGM...ds8 (pans) given 1 month treatment dose zith, the rest of us only 10 days. My DH who tested IGG pos was given
  20. We will be seeing an LLMD but could not get an appt until Dec 10. Yes, I have done some research on Myco P. and I was a little upset, to say the least, that we were not given enough antibiotic to fight it....my other 2 children and myself were only given 10 days and we were all IGM positive...I hope this wait does not set us back too much. We are from Canada but will be travelling to see Debbie McCabe, unfortunately, she cannot give us anything until she sees us first.
  21. What is strange though is that he was on the azithromycin for almost 2 months with only positive results....his tics were almost gone, why might it be causing a reaction now, especially since he is only on 250mg every 3 days. He was on 500mg each day before and was fine.
  22. DS8 did extremely well on zith.....tamed his tics to at least 95%. This was over the summer and he was on treatment dose for about 45 days for Myco P. Then Dr. T. did a trial and added augmentin to the zith for 10 days to see if it would kick out the remaining tics but we didn't see any change. Now he is on prophylactic dose zith (250mg every 3 days). He has been doing well off the antibiotic but every time I give him the zith now, his tics ramp up for the next 24 hours...there is a clear relation to his increase in tics and the zith. Can a med that has made a significant improvement in h
  23. Technodad, I also have family members with a history of TS or tics - my husband being one of them and my cousin's daughter who is 7 has had on-going tics for over a year (the tics just recently stopped). My ds8 has been recently diagnosed with PANS (Dr. T.) even though we have a history of tics in the family. I do not believe the 2 are mutually exclusive. Dr T. told me that there is also the possibility that my husband has PANS and that would not surprise me in the least. For 11 years I had no idea my husband even had any tics...only when my son began ticcing did I make the connection.
  24. Tamistwins - I just PM'd you the list.
  25. landamom - our children do sound very similar....I just noticed your signature line...my ds may also have lyme and he also has a chronic cough...very mild but there nevertheless (I wonder if this is because of the Myco P). His wbc is low but within the reference range. Dr. T. said that his immune function may be low because of the myco p infection...we will have to re-test the IGG numbers and go from there...and yes, I have also read that low WBC could be due to infection.
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