laurie 39

Thank you for the advice. I will have us all swabbed for strep. I'm really, really wondering how all you folks were able to get your kiddos on the prophylactic antibiotics, or any antibiotics for that matter, through a family doctor. I will print out the info, as I'm anticipating a possible issue with the tics once we are finished with the medicine. Wish me luck with the pediatrician, as this is only just the beginning. Oh, and like you, I think I'd prefer the physical stuff over the mental (weepiness, frustration, anger)....boy can it suck the energy right out of ya!

1. You can use Silk (soy milk) or rice milk that are fortified with the calcium and vitamins in regular milk. Lots of products now add these things (orange juice, soy yogurt, etc...) 2. When my daughter (she is also 6 yrs) was enrolled in the PANDAS research at UF, they tested all of us for strep just to make sure we weren't carriers (we weren't but I was happy to do it to rule it out). So, yes, it would be a good idea if your son does have PANDAS. First, though, I would get the PANDAS diagnosis to make sure that is it. 3. Yes, that is what happens with PANDAS, the symptoms spike and fall dramatically - that is the difference between PANDAS related OCD or TS/Tics and regular OCD or TS. The PANDAS kids have exacerbations and remissions that go up and down (sharply) especially the onset is very sudden and extreme, which is different from regular OCD & TS - which normally comes on slowly and builds. PANDAS kids will have a sudden, drastic onset which should remit with antibiotics (but will still have ups and downs), if the PANDAS child get strep again, the syptoms will come on sudden and drastically again. 4. From what I have learned from my daughter being in the PANDAS research, this will be an ongoing problem for her. Even with prophylaxis antibiotics being used to keep down the threat of new strep infections, she will have symptoms from time to time, they could be realted to strep or even other infections, the flu, stress, etc..... Dr. Murphy told me that the PANDAS kids she sees will have lingering effects - motor problems, emotional/mood problems, etc that are very long lasting - she told me that she's has not had a child that went completely back to normal (normal being before the PANDAS started). Things get better and the child's "old self" will come back, but there will always be something that lingers. I have read a lot about PANDAS (basically everything I could get my hands on since this happened to my daughter) and I've read a lot about symptoms completely going away with antibiotics but this is apparently not the norm. My daughter has been on antibiotics for about 3 months now and we still haven't seen a strong remission - tics come and go, but the moods, emotional liability, rages, etc that we'd never seen before until PANDAS reared its ugly head are still with us and those things make life very tough! We can handle the tics - no problem, its the emotional & rage stuff that is awful for everyone. I feel so bad for her and PRAY that we will see a change soon, we all need it!! VERY glad to hear the antibiotics are helping for you! Good Luck! I cannot thank you enough for this information. Has my son had strep before? Interesting...because I think he has, but no one was aware of it. When he was in kindergarten he became sick (bad cold, no tics at that time). Here is what he went through: 3 months of therapy for severe separation anxiety, OCD behaviors (although not diagnosed: ex. getting up from bed in the middle of the night to practice cutting paper so he could master it in class, crying and stressing for days on end because something was not perfectly glued on his papers in class, not wanting to go to school and having and having to have a VERY exteme regiment once he got there, twirling his hair to to point of having a bald spot on his head, and chewing holes in his shirt sleeves. Poor little guy. The councelor never found anything 'wrong' with him, but from what I've been learning lately, this all might add up. As far as nutrition, right now I'm just getting him off of milk/milk products due to mild eczema and allergies. I will have to get a test for food allergies soon, but first need to find a doctor in Houston that will humor me with the whole PANDAS thing. Just wondering: how does the whole LCD/Plasma screen issue come into play with PANDAS kids? How do you feel about cleaning up his diet (but not going overboard)? I've already got him on all organic meats and very limited junk: junk being: (trying to remove all the dyes/additives from his food). I feel like I could just type questions all day long. Thank you for all this wonderful information. Thank You!! laurie39

Hi there. We are currently being treated for Strep (my son and I), and are having the full spectrum of blood tests run for Strep soon (any advise on when)?? My son (6yrs.) completely stopped tics after two days on amoxicillin(250mg x3day). I'm convinced this is probably Pandas. My questions for you (if you have a moment)....1. He has been taken off of milk and I wonder what to suppliment for his calcium/vitamin D, any suggestions? 2. Should the entire family have the Strep blood work done? - - - I'm also unable to find any info about carriers....will they keep re-infecting the rest of us in the household? 3. I've been reading the boards nonstop, but cannot find any info on kiddos that have been treated for strep, gotten off the course of antibiotics and 'recovered' from the tics (until next onset of Strep), is this even possible? 4. I guess what I'm asking in 3. is: has anyone successfully eradicated this stealth strep from their child's system successfully? I'm so sorry these are so many questions. I'm just anticipating a long road ahead of us (based on what I've been reading). I also wanted to say hi and thank you all for being such great sources of wisdom and advice.

Ronna, Hi there. We are currently being treated for Strep (my son and I), and are having the full spectrum of blood tests run for Strep soon (any advise on when)?? My son (6yrs.) completely stopped tics after two days on amoxicillin(250mg x3day). I'm convinced this is probably Pandas. My questions for you (if you have a moment)....1. He has been taken off of milk and I wonder what to suppliment for his calcium/vitamin D, any suggestions? 2. Should the entire family have the Strep blood work done? - - - I'm also unable to find any info about carriers....will they keep re-infecting the rest of us in the household? 3. I've been reading the boards nonstop, but cannot find any info on kiddos that have been treated for strep, gotten off the course of antibiotics and 'recovered' from the tics (until next onset of Strep), is this even possible? 4. I guess what I'm asking in 3. is: has anyone successfully eradicated this stealth strep from their child's system successfully? I'm so sorry these are so many questions. I'm just anticipating a long road ahead of us (based on what I've been reading). I also wanted to say hi and thank you for being such an inspiration. Laurie39 p.s....Chemar.....please, please jump in with any info...you are so very knowledgable. Any info is appreciated! Laurie39

Ronna, Hi there. We are currently being treated for Strep (my son and I), and are having the full spectrum of blood tests run for Strep soon (any advise on when)?? My son (6yrs.) completely stopped tics after two days on amoxicillin(250mg x3day). I'm convinced this is probably Pandas. My questions for you (if you have a moment)....1. He has been taken off of milk and I wonder what to suppliment for his calcium/vitamin D, any suggestions? 2. Should the entire family have the Strep blood work done? - - - I'm also unable to find any info about carriers....will they keep re-infecting the rest of us in the household? 3. I've been reading the boards nonstop, but cannot find any info on kiddos that have been treated for strep, gotten off the course of antibiotics and 'recovered' from the tics (until next onset of Strep), is this even possible? 4. I guess what I'm asking in 3. is: has anyone successfully eradicated this stealth strep from their child's system successfully? I'm so sorry these are so many questions. I'm just anticipating a long road ahead of us (based on what I've been reading). I also wanted to say hi and thank you for being such an inspiration. Laurie39

Hi, I've left you a message in the below post. Know you're busy...but when you get time! Thank you, thank you,thank you~!!!! Laurie39

Chemar,. oh my God, you are a wealth of info. you see, my son just began ticing Friday. I now have white blotches on my throat and I think we both have STREP!!! I've never been diagnosed with it, but I am requesting all of these tests at the doctor today. I have Tourette Syndrome as well. Please provide me any info you can. I'm very ill today and running a high fever, but this has SO given my husband and I hope. Also, what is a PANDA? laurie39

Hi lisaH. I'm still trying to figure out how to properly send a reply, so I hope this comes over. Right now I'm having a bad day (due to the recent realization of TS in my boy). I've talked to his teacher already and I'm absolutely grateful for this board. When I was diagnosed at 12, it was a real nightmare, and my parents had no information or support whatsoever. I suppose the bright side of all of this is that my son has someone 'in the know' who can relate to him on such a personal level. Could you let me know when your daughter began exhibiting symptoms of TS? I hate to say this, but the huge fear here is that he will end up with the severe end of the spectrum, as opposed to my 'mild' (if not mostly nonexistant) symptoms.

Hi. I've just read your post and I cried. I am 39, living in the states, have mild TS and just this week realized that my six year old son had it. I cannot finish this right now, but later...can we be friends? I need to connect with you and your family, just not right now. My heart is broken, for you, and for us. I will be returning to this site. I'm glad I found all of you. Laurie