cdnmom

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.

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 that when coxsackie is found in pans children, some doctors will put them on Valtrex but does it make a difference if they have an active infection? With all the symptoms? Do you think it would harm them? I have an appt scheduled with Dr. T. on Tues but still 3 days until that happens so I want to know if it's wise to start them on the Valtrex now. No one is showing any Pans symptoms at the moment but I am not confident they won't start to show up later on. Thanks.

Can anyone please tell me what the treatment dose is for pandas kids with strep? And what abx? Thank you.

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 was yesterday. Thinking he needs stronger abx or combo....has anyone here experienced this? What should I be asking for? I've scheduled an apt with Dr. T. but that doesn't happen until next Tues. Thanks.

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 collect stool sample from 2 of my children who were throwing up most of the morning and bring to a doctor tomorrow to see if they will culture it....in the meantime I will watch them closely...I don't think anyone will give them any meds at this point; they are both doing much better....eating now, keeping food in and playing (no more lethargy). The puking lasted about 6 hrs but seems to have passed. Just worried there is bacteria lingering in their sysmtems. It's been a crazy morning to say the least!!

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 down though. I don't know what else to do. He threw up 10 times from 6am to 11am but is ok now. I'm dosing advil and he's managed to keep that down for now....should I be bringing him to emerg? I have stash of Zith at home, should I start it? I also have 2 repeats of Augmentin but can't get my hands on that until tomorrow. Please help.

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 the IgG test.

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 an increase in his tics...I might try it again just to be sure it was indeed the quercitin causing the flare. Sorry I can't be of further help.

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.

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. Doctors will tell you that it indicates a past infection and so the body will have antibodies floating around; all the time. So if the infection is no longer active why do we need to continue on abx? Is it because the infection has manifested it's way deep into the cells and so it really is still there? But most docs don't believe this? Diane

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.

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 and has a mild cough (usually in the morning) and this has been off and on for a year now. I have severe seasonal allergies (which is part of the reason I suspect he may have them), and last year his tics were bad all summer (I suspected seasonal allergies then too). I suppose it wouldn't hurt to also try an otc anti histamine? Any advice is appreciated.

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.

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 pondering this all day and still have not decided what to do. I have been trying to have his abx switched to something else but after 4 e-mail attempts to Dr. T.....have yet to hear back from him. Ds is completely normal right now, it's just when I ask him if his throat hurts, he will swallow and say "a little bit". What would you do?

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.

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 rock centre - I just have to see that tree. The skating sounds like fun too, but we'll see how busy it is. Thanks for all your input. Dinae

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 as reasonably priced hotels go? Thank You.

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 nothing....I do not feel this was adequate treatment and so we are going to visit with LLMD as I believe she will address the Myco more diligently. Dr. B, from my understanding, treates aggressively so you may be ok there. Our Pans doctor told me that the Myco P. bacteria comes around and hits hard every 7 years. We got it this past Feb so maybe it was a big year for Myco p in N. America. Good luck.

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.

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.

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 his symptoms be wreaking havoc now? During the summer, he was also fine with probiotics and now he cannot tolerate any of them (tic increase). It seems like he is super-sensitive to any supp or med I give him.

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. My husbands tics were very mild but have been the worst I have ever seen them this past year. Our entire family has tested positive for Myco. P in Aug and my husband was the only family member whose results showed the Myco P. is chronic so who knows, maybe this is why his tics have been worse this year. My point is that just because there is a history of tics in the family, this does not indicate that there is a greater chance that your child has TS over PANDAS. I would consider seeing an expert for a second opinion.

Tamistwins - I just PM'd you the list.

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.