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Everything posted by powerofprayer

  1. Where would you find the manufacturer of the drug? I've checked my bottle of doxy but I don't see any info there? this concerns me a great deal!
  2. http://www.ocfoundation.org/PANDAS/ This is a great article that someone here shared with me.. I printed a copy for our provider and she read over it and was willing to give my dd 6 weeks of Zith. The article also guided her in ordering certain blood tests. Good Luck!
  3. SF Mom, Thanks for your input. There was no way they were even considering giving me three weeks of Doxy. I'm guessing you see an LLMD. I may need to find one in NC just in case. I do feel that some tick parts may have been left behind We were in the car when I noticed it and my husband claims he had to remove it as fast as he could because I was "overreacting". Pffft....do you think kicking and screaming, "Get it off, get it off" is overreacting? Anyway if something was left behind that would explain the bad reaction, right? But it probably has increased my chances if getting a TBI too doesn't it?
  4. JoyBop, By treatment to prevent infection, what do you mean exactly? Is it a one time prophy dose of doxy? I went in today because my reaction has been horrible. It's beyond itchy and extremely red and a little swollen. Anyway the NP I saw thinks cellulitis so she gave me 10 days of Keflex. She also gave me ONE 200mg dose of Doxy since we were still in the 72 hour window of the tick being removed. Is that dosage typical of mainstream doctors? The pharmacist told me its pretty standard to give that one time dose in NC.
  5. Ewwwww, ewwww, ewwww! I had a tick on the back if my leg on Saturday. DH removed it for me but then threw it out. I so wish he would've held on to it so we could've identified the species. I'd feel so much better if I KNEW it was not a deer tick. (I know the others transmit disease, but its the Lyme i most worry about). Since yesterday the site has been very itchy and has a small raised bump, like a mosquito bite. From what Ive read this is normal in the first 48 hours after a bite? My doctor said that Lyme is unlikely if the tick was attached less than 48 hours? True??? so is this just a wait and see situation? At least I KNOW I've been bitten so if those flu like symptoms were to start Id know why. From what I understand the classic EM rash doesnt always show up. Any advice/info is appreciated.
  6. Hi! A few questions after some recent testing dd10 has had. Her PCM ran a bunch of tests at the end of feb and gave her a 6week trial of azith. We didn't see enough improvement in her tics for us to say YES, This IS PANDAS though. At the time she had cultured + for strep. Took her in for a follow up last week (this is about a month post abx) and the culture was again +. PCM says she is most likely a strep carrier and is referring to ENT. My question: is being a step carrier significant in the non PANDAS world? What does it mean exactly? Can she infect others being a carrier? She doesn't get the classic strep symptoms herself. Other tests came back normal. They Lyme test was negative, although this was just a blood test so I don't know how reliable? She's never had a known tick bit though. The myco P was 2.26 which is high. And the igM was well under the reference range. PCM said the elevated IGG simply means she had the bacteria in the past....not an active infection. So i took this to mean that she will always measure high because she has immunity now? Am I way off track here? Her vitamin D was low but the PCM said that is quite "normal" for a 10 year old and said we could supplement if we wanted. Th only allergen she reacted highly too was dust mites. This was an IgE serum test for about 90 items. Everything else came back below the reference range. Besides dusting/vacuuming more, does anyone have tips to control those little organisms. TIA....I know there are a lot of questions here. I appreciate ANY help/advice.
  7. Mar, My dd, now 10, had a mouthful of hardware last year. She had a lip bumper, the expander and 4 braces on her front four top teeth. The expander was in a total of 8 months ( though we only "expanded" for three weeks or so) as was the lip bumper. The braces were in about 5 months. She had no noticeable increase in any of her tics. Once she finished this phase 1 treatment and everything came out though, a vocal tic returned that we hadn't seen in awhile. At least not consistently. That started around end of November and its still present. I really can't say that the tic is caused be removing all those devices though. ( But the thought does creep into my mind from time to time) I think it's just the nature of tics/TS instead. We are very happy with the result of the treatment. She will need to have full braces once all her baby teeth are out. Good Luck!
  8. Thank you, THANK YOU for the advice. It was a successful appt. our provider agreed that a trial of abx is a pretty benign treatment plan. Like I said before I am not convinced this is PANDAS or PANS. But I can't let it go without a solid try. So she gave us 6 weeks of Azith. ( Im wondering though if the dosage might be low.......Can anyone chime in with their azith dose) i am so happy that she is willing to work with us in finding answers. She also ordered some extensive blood work. That was the only negative part to the day. Dd has severe anxiety for blood draws and we could not get it done today. I'm hoping my dh has better luck tomorrow. He's not as high strung as I am so he's probably the better one to take her for this. The article Chrissy posted is excellent. As our FNP was skimming it, I'd see her nod in agreement and make quick notes and she'd add things to the lab work up based on what she was reading. I was so grateful not to get shot down. She asked if she could keep the article. I told her "by all means, please school the rest of the clinicians" Nice to know there are mainstream providers out there who DO want to help and are humble enough to admit they don't know everything, but are willing to learn.
  9. I've only read about Kava Root. Never have tried it though. Duke did some studies about 10 years ago with the conclusion that it is just as effective as Benzos. There is/was some concern about liver damage but according to the duke study its NOT an issue. I don't thing it's meant for long term though. Google it. You'll get lots of info.
  10. Yes I'd say that's a pretty clear cut case. How is your ds these days? My dd has tics, motor and vocal that have waxed and waned over the years. but for us there is no severe OCD or known strep infection to relate it all to. Just a suspicion on my part, mostly because of a high cam kinase score three years ago. So Even though I'm not CONVINCED we are dealing with PANDAS I do not want to leave one stone unturned. I'm hoping a trial of abx will give me some answers. Whether to pursue PANDAS or head in Another direction.
  11. Thanks everyone. I actually am NOT familiar with that scale so that is great advice. MomtoJake....did you just suspect PANDAS too and were wanting a trial to confirm or decline your suspicions?
  12. I'm looking for more of the wonderful, invaluable advice I see on this forum. My dd now 10 has had tics since age 4. She probably has some real minor OCD but nothing that interferes at this point. I asked our FNP if she'd be willing to give us a trial if abx to see if we notice improvement. I was bold and straight up asked for a month. I think this is where she got apprehensive and said she'd like to run tests first. I'm not sure what she has planned but I'm guessing ASO and strep culture. I told her that its not uncommon for those results to not show anything (from what I've read here) She at least has heard of PANDAS.....says she even has a patient with a confirmed dx. I think that child receives his/her tx in another city though. So what info should I bring her. Beside my dd's history I mean. Should I even bring up use high Cam Kinase score she had three years ago? How can I explain easily what that means. That Cunningham article is way above my head. What abx should I request? In my original message to her I asked for augmentin or azith. Those SEEM to be the ones with good success rates. Anyone here been successful in convincing a dr for a trial? What was your argument? TIA for any advice for this upcoming appointment. Prayers will help too!
  13. http://clinicaltrials.gov/show/nct01172288 I posted this on the tics/TS board a couoke weeks ago. Posting it here toomsince this duscussion is on NAC. The above link is a trial right now using NAC as a possible treatment for tics (in TS).
  14. I thought tics are thought to be a result of too much dopamine, not too little? I am referring to TS tics though so maybe theres a difference depending on the condition causing the tics. Now I'm really confused.
  15. That is the article Dr Cunningham gave me back when we sent In our samples. But because that was just in the research phase then, and now it is a commercially available test, I was wondering if any of the info changed. Had any of their hypotheses been proven? Disproven? Does an elevated cam Kinase now mean definite PANDAS/PANS?. That's really what I'm hoping someone can shed some light on.
  16. She did say she wanted to do some testing before just prescribing abx as a trial. I assumed she meant strep Titers. But from What ive learned here those dont even have to be elevated to indicate strep do they? I've read alot about myco here but I'm not real sure what that even is. Is it a type of pneumonia? Is it pretty common? I'll definitely ask her about that too. I thought if I could explain the cam Kinase to her she would be more willing to investigate this further. Not just say tic disorder and want to give the typical drugs.
  17. We had the Cunningham Cam Kinase test done about 3 1/2 years ago when it was still in the research phases. Back then my dd (then 6) had elevated cam kinase at 175. The results said that "she MAY have antibodies signaling in the brain". My question is, Now that this test is available commercially are those results more definitive? Do they mean something more significant now? Are people who suspect PANDAS still getting this test to confirm/rule out the dx? Sorry I'm probably not making much sense. My dd (now 10) only real symptom is tics since age 4. She did have strep throat at age 7, was given pen VK for 10 days I believe. Never noticed any decrease in tics. I'm only re-pursuing this now because after many years of tics being hardly noticeable to anyone but us, they have increased and now there is a vocal involved. Her current pediatrician is willing to DISCUSS the possibility of this being something other than genetic TS. So I was wanting to bring her the info of that elevated Cam Kinase but I need a way to explain to her what it means. Can anyone help?
  18. Does anyone have experience or heard of DR Michael Sharp. He's in Chapel Hill, NC. I was searching integrative physicians in NC and he came up. I've been in contact with him via email and asked about treating tic disorders. I specifically asked about PANDAS/PANS . He replied back that he does treat PANDAS. Unfortunately he does not take insurance. That's where I get nervous because I wonder if non participating providersare in it to make a quick buck off desperate parents. I am jumping the gun a bit because my dd10 has not been dxed with PANDAS, But i am keeping my fingers crossed that her PCP will give us a trial of abx to see if her recent tic exacerbation will calm down with a course. She did have high CAM Kinase score years ago so it's always been in the back of my mind. Nadine
  19. http://clinicaltrials.gov/ct2/show/study/NCT01172288 Came across this recently and since I haven't been on the forum much in the last couple years, I was wondering if you all have seen it? Opinions? Anyone try NAC before at that dosage?
  20. It's been a long while since I've visited the forum and even longer since I've posted. My dd, now 10 has had a vocal tic (throat clear that follows a sniff) that seems to have really ramped up this past week. I noticed a slight increase in December and even greater this week. Over the last few years, we have seen this type of tic but not so frequently. Her first ever tic was tight eye blinking when she was 4. We still see that but not currently along with the throat clearing. We've never had an official dx. She had that Cunnungham test about 3 1/2 years ago and it did show elevated numbers. As far as I know though there was no strep prior to onset of tics. Since I have not read any info lately in these boards I can't even remember what those numbers meant. I do remember my numbers in that test were in the normal range and I've had tics since childhood. My first memory of them is from 9 years old. Anyway a couple questions since I feel like a "newbie" again. 1) I want to start the magnesium supp. Since she's 10 can she use the Natural Calm instead of Kids Calm? She HATES the taste if the KC. 2) how much Epsom salts do you out In a bath?? 3) any other supps I could add that have a good track record for quieting vocals. I'm trying to be realistic and accept the fact they probably won't go away 100% but I do want a decrease. So far it hasn't been an issue in school and I don't want it to become one She seems to think its allergies, she said she always does that in the winter. I've been giving her Claritin just to "see" but I haven't noticed any improvement. Then again it's only been two days. Thanks for reading and any advice you can give. Nadine
  21. RE: #10 on P. Mom's list of info from Dr. C......haloperidol being researched as an effective treatment. Really? I just HATE to see that drug mentioned. It used to be the drug of choice for TS but from what I've read/heard from people, the side effects were just NOT worth it. The possibility of TD is just too high for my liking. But then again, if they are researching that drug further, maybe something good will come out of it. Great information, P. Mom.
  22. Ok....so i guess i was way off in thinking that since there was no current infection, yet tics remain meant that PANDAS is not the correct dx, right? That's what I understand Peglem saying. I gotta get my brain wrapped around all of this. so it's the ANTIBODIES that could still be running around wreaking havoc, correct? And would a full month of full strength abx (like T. Mom suggested)take care of these antibodies?? Would I be expecting too much to see any improvement? Or should i expect that with a month long course? SInce the Pen VK took care of the infection, would it be appropriate to try the same? I am almost certain our ped will NOT do this since she admitted to me awhile back that she'd "heard" of PANDAS during her residency but has no idea on how to treat. about the steroid burst, i really am hesitant to go that route since IF this is a tic disorder like tourettes, i've read it can make things a whole lot worse. what is a taper? T. Mom.....what do you do now when the "little blips" do show up? Is your dd still on abx regularly? And what was her main symptoms.....tics or OCD? @Vicki.....it was the throat swab that came back positive....not the anal area at all. So that was not retested last week, just the throat was. DDs 10 day course ended on 7/13 and we had her retested on the 30th. Should i have waited longer or brought her in sooner? And we did NOT have the rest of the family tested. I guess if one of us were to be walking around with strep, she could be reacting to that, right? Even though she may not actually get the infection?? Like what Peglem said about exposure and the immune system reacting? So many questions.........*sigh* thanks everyone!
  23. I understand this is not a place for diagnosing but i just would like to know WWYD? A little background, since i don't post often, and you won't have to go back to find our story: My dd7 first presented with an eyeblinking tic in 2007. I myself have had tics (motor and vocal) ALL my life. Never been medicated/treated, just dealt. Back in 07, when i first read on this forum about PANDAS, i thought, could it really JUST be strep?? Really THAT simple?? HA! i now know there is no such thing as JUST strep for these PANDAS kiddos. How naive i was. anyway i had dds ASO titer and it was normal, so we did not pursue the PANDAS angle. of course i now know that one can still be dx with PANDAS with normal titers. Then last fall when i started reading about dr Cunninghams study, i participated and sent in BOTH our samples. To confuse me even more, MY sample came back with a CamK of 100 and dds was 175. Dr C herself simply stated this MAY mean that she has antibodies that are signaling in her brain, but that a PANDAS dx had to be clinical. so while it has always been in the back of my mind, i never really pursued it with a dr. then at the beginning of july, i took dd in for what i thought might be pinworms. the ped. said no it was not but her anal area was definitely red and aggravated by something. i asked about strep and/or yeast? she said it could be so she did a swab of the area and then i asked if she could swab her throat as well, even though dd had NO typical strep symptoms. rapid was neg. but the 48 hr culture was +ive. i could NOT believe it. so we did 10 day course of Pen VK.....i believe it was 250mg/twice a day. during the course, i didn't notice any of her tics resolve so i took her for a follow up last week. in my mind, i was thinking perhaps the PenVK wasn't the right AB for her and perhaps she is a strep carrier? they called me today and the culture was NEGATIVE. so i'm wondering, where would you go from here? I mean, is PANDAS still worth pursuing? Since the abx obviously knocked out the strep, but NOT the tics, this can't be PANDAS, can it? is there something i'm missing or haven't learned yet? Or,should i just chalk this up to a tic disorder due to bad genes and continue looking for possible triggers? Thanks for ANY advice you can give. This forum is a WEALTH of info and support.
  24. You just described my dd 7 to a TEE! she does rub her eyes alot, and i do mostly notice it during the allergy season. so i think it is a combo of the allergies AND the fact that her eye are irritated from the blinking.
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