cobygurl

Hi, I tried to register but could not get the payment button to show up. Anyone else experience this issue? Also, does anyone know if the tickets are priced per person or per couple as my husband was also hoping to attend. Thanks!

Hi Linda, Thanks for the information! Just curious how long were you on the Acyclovir? How did you know when to stop or are you still on it? From your post, my understanding is that your DS has been on it for months...is that correct? I was told that 3 refills is probably the most my son can do (10 days each refill for a total of 30 days.). My son was 4 just turning 5. Maybe that is why he was only told to do 30 days total? Also, was it vocal tics your DS had when coxsackie hit? Do you take anything (meds, supplements or homeopathics) now to help? Thx!

Hi, DS 5 just had his titres checked for coxsackie after 3 rounds of Acyclovir. He was put on the Acyclovir by Dr. T. I should have the results in a few days and can post a follow up. At the point all I do know is that he had elevated coxsackie and on the Acyclovir his intense "itching" tic plus a few others got up to 85% better. Still not 100% but we'll know more about the next step in a few days.

My little one ran into a friend of his and was sent flying. He hit his head on the corner of a wall and had a huge goose egg, swollen crown etc... The doctors and the nurses told me that it would take at least 2-3 weeks for the swelling and pain to go away. I would have it checked to make sure there isn't any fractures but it does take quite awhile for all the swelling to subside. My little guys head was so swollen that I thought he had actually dented his skull from the impact. True to what they said, it took about that length of time to resolve.

Hi LLM, Thank you so much for replying! We used Advil for 3 days and by the 4th day, DS woke up and was back to his normal self! Honest to goodness I probably should have used it at least 2 days earlier but I was hoping it would resolve on its own. Amazing enough on the Advil all rage and motor tics disappear! Curious but hav you tried any natural remedies for inflammation? We just recently started a Pleo remedy (homeopathic) for inflammation and I'm hoping it might act in the same way as Advil does for DS 5. If you don't mind, would PM me the names of the doctors you have found helpful to you. I have seen several and am planning on booking a consult with another. I just don't want I be missing anything especially since this has now been going on for a year. Thank you so much!!!

Hi Momcap, I tried PMing you as well but it said you couldn't accept messages. Could you please PM me as well. Thank you!

Thank you so much for replying! Yes, I would love to know about the secret Canadian group here on FB. I am working with a naturopath here in NS who is very supportive of what we are dealing with and a GP who at this point is willing to rewrite the script for blood draws ( I do suspect though that it may be starting to get to her as she always asks why the doctor in the US asks for these!) One of my biggest problems is they wont run the tests for Coxsackie, AntibNase and a few others that I desperately need - apparently they just aren't done here unless someone high up okays this from infectious diseases or something. We are also seeing an environmental physician in TO (we flew there once) and have done phone consults for the rest of our appts. He ran several tests, doesn't know that much about pandas/pans but has been helping with DS nutritional deficiencies. It's been a slow road and the only time we have seen some relief and confirmed a pans diagnosis (at least to us) is that he gets markedly better when you give him ibuprofen. He has just finished a MAJOR FLARE tht lasted this while week. He has been given shelves of supplements, some have worked (Zinc, Vit C...) others not, but I still don't think we have found everything, I suspect he has more than one infection... We are currently working with Dr. T. but have a hard time being the go between with all these doctors and piecing it together. We have also consulted with Dr. Wojcik an allergist in NYC who we first heard of in Sheila Rodgers book "natural Treatment for Tics and Tourettes" when all we could think was that thi was TS. Dr. Wojcik is wondeful and caring but we ate not currently doing immunotherapy. I am now thinking that my best option would be to drive the 8 hours to Maine to get blood drawn. Do you know if they would except a blood requisition from our of State doctors? By the way if either of you would be interested in the EP name, I believe you might both be near TO please let me know. He had been helpful in identifying nutritional deficiencies and although we haven't been able to address al his findings, it's good information to have. Thank you so much for the insight!

Hi, I was curious if there were any Candians on the forum? I am in Nova Scotia and so far have needed to travel to the States for much of everything. In fact, trying to follow up on titres for DS to see if they've moved and they won't do the test here (i orginally had the blood drawn in NJ eith Dr. T.). Just curious if any of you have found any paediatricians or doctors who are versed in Pandas/Pans here in Canada and willing to help. Thank you

Hi, My 4 year old son had the same levels. Nobody made a big deal out of it but his accompanied by elevated alk phosphatase of 2029, normal is under 380. Interesting that it can be inflammation associated with brain. It took 6 months for us to get medication for PANS after the first bloodraw that indicated abnormal readings for his liver. It has dropped back to normal, both his alk phosphatase and ast and on the Acyclovir we are about 65% back to normal although we are in a flare up right now

Hi, Feeling a little frustrated and or sad tonight. My little guy has been in a flare for the last couple of days and so today I tried giving him Advil. It definitely helped with his anger. Can any of you weigh in on how you use Advil during a flare. Do you start it as soon as you suspect that your child is going into a flare? How long do you use it for? If you don't use it to decrease the inflammation, are you almost assured of some sort of damage? His main symptoms are ticcing and anger. Do your kids still tic at excitement, videos and or reading? It seems that that is part of TS too...so confused right now. I spoke with Dr. T about a week ago and he mentioned that he goes for 85% better? My child is definitely 85% better on Acyclovir but he will be finished his 3 refill this in a few days and I am terrified of regression. Have any of your children gone into complete "remission" for lack of a better word? Is part of your process still giving Advil during any aggravation? My little guy is only 5, right now I an feeling scared about so many years ahead of us with the possibility of this getting so much worse. Sorry for being such a downer, just feeling a little hopeless this evening. Thanks to everyone for all your ideas. Don't think I could get through this without this forum. Any advice would be appreciated...please. Thank you!

Hi, I definitely see an increase in tics when reading to my 5 year old son. I honestly have no idea why. it went away for awhile but then resurfaced about a month ago. His tics also started last June. We are from Nova Scotia but originally from Toronto. We have actually flown out there twice since then to see Dr Jaconello who is an environmental physician. He is great. He has put our DS on several supplements that have helped. If you'd like to talk more about the specific protocol you can PM me. Some of the recommendations have helped, others not so much. We are still trying to figure everything out and it looks like our little one could have PANS but let me know if you have any other questions. It's been quite the year for us but even talking to other people who understand what we are going through helps!

Hi, I am just wondering if anyone has found a way to help your child reduce their ticcing while they watch videos (computer, ipad etc...) as well as when you are reading to them. My little guy who is being treated right now for possible PANS caused by for high coxsackie titres, tics so badly during these activities. I did notice a few months ago that when we gave him B12 drops for a week it completely disappeared and then he started with a new tic and we discontinued the B12. Just wondered if any of you have had success with anything. Also, we have taken him off all screens for months at a time and when re-introduced it was better but the ticcing does come back. Thanks.

Hi Mayzoo, His titres were high for Coxsackie A and B. not sky high but elevated enough that Dr. T thinks that he virally driven. I am getting a script for him on Thursday to have his blood redrawn but am wondering if I should wait to have his results before starting again on the Acyclovir. He has now been off the Acyclovir for 10 days and his tics which got better (though never went away completely) seem to be coming back or at least occurring with more frequency. Could be him regressing off the Acyclovr or it could be a new homeopathic I tried for him to continue treating him once he was off the Acyclovir. Not sure... Is there a high toxic load with your meds? What are your daughters symptoms, tics or emotional liability? Do you need to have your daughters blood drawn frequently to check? When did this start with your daughter?

Hi, Has anyone had their child on Acyclovir for 3 refills or more? Dr. has advised us to try doing one more refill, (so another 10 days, for 30 days total) for our son. Acyclovir has helped with the Coxsackie but I'm a little worried since my 4 year old is tiny (33lbs) and I worry about the toxicity and his kidneys. Anyone had a similar experience? What did you do? Thanks in advance!

Hi Nitshel, My son just finished his 20 days on Acyclovir for Coxsackie. After the second round he was 80% better. Still had tics but definitely less. Our doctor recommended another 10 days to see if we get more improvement. We are also pursuing other treatments and supplements to help his detox and build his immune system. Please keep us posted on your progress.

Curious if anyone has done more than 2 rounds of Acyclovir? If yes, did the Acyclovir knock out the infection? If more than 2, how many rounds were needed?

Hi Ophelia22, My son too has that exact issue. I am going to be talking to Dt. T this Thursday and going to ask this specific questions. My son just finished his second round of Acyclovir (20 days total) and though it helped, not enough to knock it out. I am thinking it might be the other issues. Did the Valtrex give you any improvement? How long were you on it for?

Hi, I am speaking to Dr. T on Thursday. My son had high coxsackie titires but never any of the symptoms. We found it in the bloodwork. He was put on 2 rounds of Acyclovir (20 days) which we just finished yesterday. The Acyclovir helped some of his tics but not completely. How are you treating the coxsackie?

Hi, I honestly don't which is more effective. I think Valtrex is stronger? At least that is the impression I was given by my doctor and he wanted to try the Acyclovir first. My son is 4. We are on day 19 of 20 of Acyclovir and I would say it has helped some. My son still has tics (skin picking, scratching, adjustig clothes, shoulder shrugging) so the 2 rounds of Acyclovir (10days each) hasn't knocked his coxsackie out but we could be dealing with other issues too. How has the Valtrex been for you? Does your son have tics? If you would please keep me posted, I'd love to know how you make out with the Valtrex. Also, if anyone has had to stay on more than 2roubds of Acyclovir, I would love to know! Thanks!

Hi, I am wondering do your kids tics (if they have any, go away) when not in a PANDAS flare? My little guy has them whether in a flare or not. In a flare his tics are worse and OCD definitely worse but he still tics otherwise. I am hoping we finally get to the root cause of this because quite frankly some days I feel like its killing me. Sorry to be so dramatic but it makes me feel so sad, so helpless and so overwhelmed! I just want him to get better.

Hi, Do you know why, in the study you mentioned, people with myco became worse on penicillin type antibiotics? My little guy is on a homeopathic derived from penicillin right now. Thanks!

Hi EmilyK, Have you noticed a huge improvement on the antibiotic? Which one(s) are you taking? Do you take probiotics with it as well? Any other supplements? Thanks for the info!

Hi, I know that many people say take omega 3 's like fish oil and flax for the brain but I've heard that coconut oil has some very beneficial infection fighting properties. Anyone use it for their children? Any success? Thanks!

Unfortunately we can't do the Cunningham Test in Canada. After our second round of antiviral, I am going to talk with the doctor. My husband and I had the throat swab but they were rapid - within 24 hours. Does that count to determine if you are carriers? I am wondering, do you take any supplements that have helped your child?

Hi, thanks for the response. He has had a couple of throat swabs before and all were negative. 2 ASO tests too were within normal range. This is the first time we've taken the anti bnase and it was elevated. The day before all his tics exploded last fall he did tell me something very bad was happening in his mouth/throat. At that point I knew nothing about Pandas:Pans. I just thought he had a sore throat and the next day it all started. His tics have not stopped since. It all makes me so sad and I remember thinking back in October when this all started, hopefully by his birthday I will have this all figured out but his 5th birthday is in a couple of weeks and I am just feeling so sad about it all. Thanks for the advice, I will ask to have his titres retested.