Kay

That's my baby!!! Proud of her!

My vote is in, emails have been sent, my status on fb is vote everyday for pandas research!!!

My daughters feet sometimes are bright red. It is the top of them and sometimes it happens after she has showered sometimes after walking around for awhile. They are bright red when this happens. She has always thought circulation issues but I am not so sure about that. She has no pain and it seems to be when her feet are hot.

Here are two links to articles in our local paper. There is a little encouring news about a new possible test that will eliminate the false positives and false negatives, as well as some information on research. Thought some might be interested in reading this. I missed the talk, didn't know it was happening, my mom passed the paper along to me. http://www.shorelinetimes.com/articles/201...f2053544454.txt http://www.shorelinetimes.com/articles/201...c2966828401.txt

Wornoutmom, Thanks for the input...this is exactly what I am looking for. It seems it is very individual even with the biaxin as far as how it reacts with each person. Good information to have. I was just afraid we were missing something, that we weren't trying it and it was the cure all for some...still it maybe something to try down the road for us but I need this feedback so thanks. Kay

Thank you too Mary! All info is good!

Thank you Angela!

I would like to hear from people whose children had high titers Igg and negative for Igm for Mycoplasma pneumoniae and were treated with Bixian and what are the results. Also if another antibiotic was used to treat it what was that? I know of some who have had high Igg's only and treated with Biaxian and have had good results, I am wondering if it is a lasting effect, if there has been on going high dose, prophylactic antibiotic and at what dose? Any info would be helpful. Daughter (19) has been dx with Pandas, we are currently treating with omnicef (had augmentin in the beginning with great results, but stomach problems with it) Omnicef still seems to be helping although at a slower pace. I know it is not what treats mycoplasma p, but doctors seem unwilling to treat the Igg. I am trying to get as much info as I can regarding the treatment in others to bring with us to our next appointments. I know Dr. T does treat it but I would like to have some sucess stories to bring with us. I did write also to Prof Garth Nicolson a link was put up on here last week sometime for the work he is doing with Gulf War Syndrome and he was helpful in explaining why Igg would be treated. But again I would like some sucess stories to take with us along with this other information. Thank you for any information you can pass along. Kay

LOL hope we tie!! We have had the test since the end of February, we were waiting for dr. appointments and to see who wanted what etc. Finally decided to do it today. Can't wait for the results.

Just sent off my daughters today too! They said they should have it by 10:30am tomorrow!

I'll try to make this short, I have posted some of the same information on earlier post. I think I too am(was) PANDAS. I had bad tooth infections (eventually root canal) that went on for about a year, treated with antibiotics each time before they realized what was happening. that was around age 19/20, also had strep I think around age 19 and impetigo around age 18. I had severe anxiety onset overnight at age 19/20. I had a few OCD things I now realize. I don't remember being sick before hand but very possible, too many years have passed. (the strep episode I don't remember being close to the onset of anxiety) One day happy kid, next day a mess and it continued for 8 years (ended up agoraphobic) Many things I think helped me to end the anxiety, food allergy avoidence, amino acids, treatment for yeast. Small relaspe with the anxiety after my daughter was born (nothing like it had been and I kept functioning) we did the treatment for the yeast at that point. Also found out though too that I was stage 4 gum disease while pregnant with my daughter, of course had antibiotics to treat infections along with surgery about a year after she was born. The antibiotics were on and off for about a year as they did each quad on my mouth. My daughter (19) now has PANDAS and presents with separation anxiety and ocd, with anxiety being the bigger problem. My dad we think had rheumatic fever when he was around 15/16 years of age (he passed of heart disease at 52) Do I think there are connections? Yes, I think some day we will see the dots connected.

Yes, if this is true -- about the CamK being indicative of autoimmune caused neuro-psych symptoms. Not just strep, but ANY bacterial infection. I wonder what Dr. Cunningham's thoughts are on this. A concern is certainly that a person gets "confirmation" though these CamK numbers and assumes it is solely strep related, when indeed it could be other bacterial infections are there instead of, or in addition to, strep. I wonder if people understand this? The key is obviously getting the right type of treatment for the underlying infection(s). Thanks for your thoughts. Mary Thanks for these post, I was wondering the same thing about the CamK if that was just strep. wondered if you had lyme would those numbers reflect also. I am on the fence between pandas and lyme disease right now...so many of my daughters symptoms point towards Pandas but also the lyme. The sudden onset though of separation anxiety after being exposed to strep (she did not present with strep) but 3 or so weeks later severe separation anxiety developed (age 19) We live in well known tick area and have pulled ticks, always tick check and seem to catch them right away but you never now...but I never remember early symptoms, unexplained fever, flulike, joint issues etc, always marked the calendar when ticks were removed (it has not been that many) and watched for symptoms. Only now the symptoms of the anxiety issues seems to fit both. I have the kit for the cunninghams haven't done it yet just received it, have an appointment with dr. b on tuesday and asking about lyme disease when we go. anyone know if he treats that as well? what lab he uses to test etc? she had a 28 day dose of augmetin 875 2x a day back in January and did well on it, back slid after going off, was then put on a 500mg 2x a day augmentin, had anxiety attacks with each dose (2 hours after taking dose) and then it would stop and she would be find till next dose. (this makes me wonder about lyme) Went off since anxiety attacks were bad had a meltdown about 5 days after. Tried the augmentin 875 again, no anxiety with it but it was really hard on her stomach. She is off everything right now waiting for tuesday. so thanks this seems timely for us, information to we can use. kay Most people never see the tick that gives them lyme. I have never pulled a tick off myself or my kids and yet we all have or have had lyme. (half of us are done with treatment and so far so good) I also do not remember the initial flu like symptoms in my kids. I don't know when they got it either. If you have symptoms of lyme and you live in an endemic area AND you pull ticks off yourself all the time, your chances are very good that you are dealing with lyme. If it is lyme you need to get on it quickly. Lyme is not an autoimmune problem as others have posted. It is an infection that will continue to grow in the body and cause multi system illness unless it is killed. It is an insidious pathogen like syphilis. It may be harder for someone who has autoimmune issues but you need to kill the spirochetes to get well. Some of the more lyme unaware doctors will say that there is no such thing as chronic lyme and anyone with lingering symptoms after a short course of antibiotics has "post lyme syndrome." This is not true b/c long term antibiotics get people well again. Many infectious diseases take a long time to kill so it should not be surprising that lyme is hard to treat. I don't know Dr. B, but unless he is an ilads-trained physician I really doubt he will be up on this. I know this is hard to believe but trust me, its true. Just read Cure Unknown by Pamela Weintraub and you will not rest until you get your child evaluated by a lyme literate physician. I hear you and have a list of lyme doctors as well (you and I have pm before on this, got the book, reading it) thanks again for all your info. Great! I have talked to so many people that I cannot remember. Let me know what you think of the book. I couldn't put it down. I know no problem, still reading that is why I am asking soooooooooooo many questions! thanks for turning me on to it..

Yes, if this is true -- about the CamK being indicative of autoimmune caused neuro-psych symptoms. Not just strep, but ANY bacterial infection. I wonder what Dr. Cunningham's thoughts are on this. A concern is certainly that a person gets "confirmation" though these CamK numbers and assumes it is solely strep related, when indeed it could be other bacterial infections are there instead of, or in addition to, strep. I wonder if people understand this? The key is obviously getting the right type of treatment for the underlying infection(s). Thanks for your thoughts. Mary Thanks for these post, I was wondering the same thing about the CamK if that was just strep. wondered if you had lyme would those numbers reflect also. I am on the fence between pandas and lyme disease right now...so many of my daughters symptoms point towards Pandas but also the lyme. The sudden onset though of separation anxiety after being exposed to strep (she did not present with strep) but 3 or so weeks later severe separation anxiety developed (age 19) We live in well known tick area and have pulled ticks, always tick check and seem to catch them right away but you never now...but I never remember early symptoms, unexplained fever, flulike, joint issues etc, always marked the calendar when ticks were removed (it has not been that many) and watched for symptoms. Only now the symptoms of the anxiety issues seems to fit both. I have the kit for the cunninghams haven't done it yet just received it, have an appointment with dr. b on tuesday and asking about lyme disease when we go. anyone know if he treats that as well? what lab he uses to test etc? she had a 28 day dose of augmetin 875 2x a day back in January and did well on it, back slid after going off, was then put on a 500mg 2x a day augmentin, had anxiety attacks with each dose (2 hours after taking dose) and then it would stop and she would be find till next dose. (this makes me wonder about lyme) Went off since anxiety attacks were bad had a meltdown about 5 days after. Tried the augmentin 875 again, no anxiety with it but it was really hard on her stomach. She is off everything right now waiting for tuesday. so thanks this seems timely for us, information to we can use. kay Most people never see the tick that gives them lyme. I have never pulled a tick off myself or my kids and yet we all have or have had lyme. (half of us are done with treatment and so far so good) I also do not remember the initial flu like symptoms in my kids. I don't know when they got it either. If you have symptoms of lyme and you live in an endemic area AND you pull ticks off yourself all the time, your chances are very good that you are dealing with lyme. If it is lyme you need to get on it quickly. Lyme is not an autoimmune problem as others have posted. It is an infection that will continue to grow in the body and cause multi system illness unless it is killed. It is an insidious pathogen like syphilis. It may be harder for someone who has autoimmune issues but you need to kill the spirochetes to get well. Some of the more lyme unaware doctors will say that there is no such thing as chronic lyme and anyone with lingering symptoms after a short course of antibiotics has "post lyme syndrome." This is not true b/c long term antibiotics get people well again. Many infectious diseases take a long time to kill so it should not be surprising that lyme is hard to treat. I don't know Dr. B, but unless he is an ilads-trained physician I really doubt he will be up on this. I know this is hard to believe but trust me, its true. Just read Cure Unknown by Pamela Weintraub and you will not rest until you get your child evaluated by a lyme literate physician. I hear you and have a list of lyme doctors as well (you and I have pm before on this, got the book, reading it) thanks again for all your info.

Yes, if this is true -- about the CamK being indicative of autoimmune caused neuro-psych symptoms. Not just strep, but ANY bacterial infection. I wonder what Dr. Cunningham's thoughts are on this. A concern is certainly that a person gets "confirmation" though these CamK numbers and assumes it is solely strep related, when indeed it could be other bacterial infections are there instead of, or in addition to, strep. I wonder if people understand this? The key is obviously getting the right type of treatment for the underlying infection(s). Thanks for your thoughts. Mary Thanks for these post, I was wondering the same thing about the CamK if that was just strep. wondered if you had lyme would those numbers reflect also. I am on the fence between pandas and lyme disease right now...so many of my daughters symptoms point towards Pandas but also the lyme. The sudden onset though of separation anxiety after being exposed to strep (she did not present with strep) but 3 or so weeks later severe separation anxiety developed (age 19) We live in well known tick area and have pulled ticks, always tick check and seem to catch them right away but you never now...but I never remember early symptoms, unexplained fever, flulike, joint issues etc, always marked the calendar when ticks were removed (it has not been that many) and watched for symptoms. Only now the symptoms of the anxiety issues seems to fit both. I have the kit for the cunninghams haven't done it yet just received it, have an appointment with dr. b on tuesday and asking about lyme disease when we go. anyone know if he treats that as well? what lab he uses to test etc? she had a 28 day dose of augmetin 875 2x a day back in January and did well on it, back slid after going off, was then put on a 500mg 2x a day augmentin, had anxiety attacks with each dose (2 hours after taking dose) and then it would stop and she would be find till next dose. (this makes me wonder about lyme) Went off since anxiety attacks were bad had a meltdown about 5 days after. Tried the augmentin 875 again, no anxiety with it but it was really hard on her stomach. She is off everything right now waiting for tuesday. so thanks this seems timely for us, information to we can use. kay

Is anyone using a Naturopathic Physicians to treat Pandas either as lead doctor or support? Although we are seeking help in the conventional world of doctors we ae keeping our ND up to date. She is interested in any protocol that other ND's might be using. I did see on the list of doctors by state that there was one ND out in Washington State, Kim Kacoroski, ND, anyone had any contact with her? thanks. Kay

thanks Joan, I am sure I will have answers once I have appointments. Yes the stomach issue really complicates things because that is already an issue for her and this doesn't help to feel sick that way too. Maybe there is something out there that doesn't upset the stomach so much, we will see.

I am a little confused and need some help with the Mycoplasma. My daughter had blood work for Step and Mycoplasma requested by Dr. K. what came back was. Mycoplasma Pneumoniae Antbodies (IGG, IGM), EIA M. Pneumoniae AB IGG, EIA 4.29 H <=0.90 ISR Reference Ranges: 0.90 Negative - no Mycoplasma Pneumoniae Antibody detected 0.91-1.09 Equivocal >=1.10 positive - Mycoplasma Pneumoniae Antibody detected A Positive result indicates that the patient has antibody to Mycoplasma. It does not differentiate between an active or past infection.. The cliniclal diagnosis must be interpreted with the clinical sings and symptoms of the patient. M. Pneumoniae AB IGM, EIA 62 <770 U/ml Reference Range: <770 u/ml negative 770-950 u/ml low positive >950 U/ml positive Anti- Streptoysin O 85 < or = 200 IU/ml DNASE-B Antibody 120 titer Reference range: Pre-shool =< 60 titer school =< 170 titer adult =< 85 titer First the titer on DNASE-B Reference range she is 19 so where do you think she should fall in those references? If adult it is up a bit if not its low. On the Mycoplasma it is the IGG that is measuring high at the 4.29 and it says it doesn't differentiate between active or past infections. Are the kids that are seeing the Mycoplasma showing active infections and if so how is that determined? My daugther started out with augmentin 875 for 28 days saw great improvement, was off for about 5 and back slide. Was put back on 1/2 dose and had some anxiety attacks it seemed 2 hour after each dose. Went off and in another 5 days while off had a meltdown, something we have not seen for awhile nor had we been seeing the anxiety attacks at home before the augmentin. We put her back on the 875 but it is just giving her so many stomach issues (which are a problem anyway) this is not helping that. She just does not feel well in general since starting it again, today we saw an anxiety attack did not last long but it was there. She had done much better the first 28 days. She does say though even though she feels physically sick her mind is clear, reading, writing, thoughts are all easier and clearer for her. We are inbetween dr. appointments, paperwork has been sent to two and we are awaiting their offices to get back to us. I also heard from Dr. Cunningham today and she will be sending out the kit for us to do that testing. Any input would be appreciated here on these test numbers, I don't think the augmentin should be causing her this much distress ( but also had the good results) and I am wondering if we are on the wrong antibiotic) Just a side note here too, she never had any Strep symptoms or Mycoplasma Pneumoniae symptoms that we know of. Kay

Dr T - here is a link to a discussion I posted on with the topic of "How many parents think they had Pandas" I am posting it here because it shows the problems I had with my teeth and with peridontal disease. Just to clarify, before I had the root canal I had probably for about a year or so off and on infection in my mouth, dentist didn't know what it was but at this time we were treating it with antibiotic to clear infections. I was ok then I did not have any anxiety at this point or before these infections began. By the time I had the root canal ( I think within that year) I was already having the anxiety attacks...somewhere in the year between the infections and the root canal they began. Here is the link I hope I am doing this right. http://www.latitudes.org/forums/index.php?...art=#entry52306

I just did a quick check myself of the website and what a great place. will go back to check out more...he did a wonderful job!!!

My daughter thinks this is a great idea and will be checking it out soon. Tell your son thanks! Good for the kids to have their own site.

My daughter has ice cold feet. They did warm while she was on augmentin. Not sure what it means. My son has very cold hands when anxious which I always thought was odd because blood flow is diverted toward the limbs in a fight or flight response. He has an awful time regulating his temperature perceptions when in an exacerbation. His hands may feel cold to me, but he's forever complaining of being hot. search with google cold hands/feet thyroid cold hans/feet hypoglycemia my daughter had cold hands and feet:it was a fall down of sugars AFTER eating: eating>>>cascade of too much insuline>>>fall down of sugar >>>>>cold hands/feet>>>>cascade of adrenaline>>>tantrums instead, if you notice coldhands/feet early in the morning it is probably related with thyroid cold feet all day and evening never warm. have had tyroid test done, no issues. thanks for info though!

My daughter has ice cold feet. They did warm while she was on augmentin. Not sure what it means.

Oh yes, they were resumed and at a higher dosage, with regained improvement. Great! good to know. I am just itchy about the changes and waiting to make appointments and such. Thanks for posting it all helps!

Not sure, we have emailed him back to get a little more info...just thought in the meantime I would do my own type of searching. thanks for your reply. It nice to know he is nice and will be helpful in all this. Hi Kay, We saw Dr. Leckman at Yale over the summer and he was kind and compassionate...super advocate for pandas parents and an outstanding resource. He referred us to Dr. Bouboulis in Darien, Ct (immunologist) for subsequent treatment. I am sure Dr. Leckman will be able to point you in the right direction very quickly. Good luck! coco, thanks for your reply I feel a little bit at ease. I guess I was worried that we finally found an explanation for all this and when the augmentin made changes for the better with her it felt good to see my girl back again. The backslide scared me and I guess I had a knee jerk reaction to not being put back on the augmentin but now understand that this route is good. Thanks for posting. Are you in CT? I can see I will be learning about different parts of the state soon. Not too far from New Haven but if Darien is the next stop possibly I will be seeing new things! mapquest will become my new best friend. thanks again for your post. breathing easier today.

Yes, huge backsliding when going off abx here...I'm curious, too, why Dr. K is not putting her back on the abx. Does he think there is something else going on, other than PANDAS? The lack of energy doesn't sound like a PANDAS symptom. (but maybe others have seen that?) I'd sure ask Dr.K what he's thinking here. for the older ones chronic fatigue does seem to be an issue. she fits the older kids description for all of it. we have emailed him back to see what he thinks we might accomplish there. so we will see, just doing my own research...once you saw the backslide was antibiotics again resumed? thanks for your reply.