bmom

That is the book and it is pages 203-208. I did not see those pages on the post. It is not really detailed information for parents that know a lot about PANDAS already, yet I would have love it to take to my sons pediatrician who knew nothing about it or the blood tests. It was trying to get him to understand and to run the blood tests. Yet this spells it out-sudden tics or ocd needs to be looked at as PANDAS. Sometimes these kids have no signs of strep. They test negative to quick strep and culture. They need the blood test and to be treated. My family clearly has trouble with strep so I will be getting the book as well to see if there is any info. that may also be pertinent. One thing I read and people should be on the look out for is that it is more likely this time of year-late winter, early spring. Be on the look out for strep!!!!

I am not seeing it there. It is a small chapter called, "Pediatric Autoimmune Neuropsychiatric Disorder Associated With GAS Infection", out of the book titled, " Clinical Management of Streptococcal Pharyngitis" by Michael F. Pichichero, MD.

I am pretty computer challenged, yet I have a document that a doctor copied for me out of a book called' "Clinical Management of Streptococcal Pharyngitis" by Michael F. Pichichero, MD. I think it is pretty good as it discusses typical course of a PANDAS patient and that most of these kids dont show signs of strep. I talks about the blood tests that need to be done. I think it is a good one to take to the doctor if needed to run tests and it is out of a medical book. Maybe someone could tell me how to post it. I think it would involve scanning, et. since I just have it as a copy. I would also be happy to fax it to anyone who might want it as I actually own a faxer! At least I understand that technology!!

I would start by looking at the strep induced tic angle. In fear of sounding like Kelly, ( meaning that she is much more knowledgeable on the subject and I am still learning) the other stuff can be looked into gradually, but strep has to be looked at now as it will go away and you will not know. Especially since he was sick recently, I would look at getting a strep test. If negative, strep culture and if that is negative, ask for the blood test. The test is ASO and anti-DNase B titers. My doctor hadn't heard of it, yet he was willing to run it. It is best to rule this out first as you only have a window of time before the titers go down.

Well, yesterday was day 3 of antibiotics. He has done one day of Pen VK and 2 of Zithro. I am not sure how he would have done without them, but if he is PANDAS should they be gone by now? Is that expecting too much? I saw the same pattern last night as I did the day before. Pretty good all day. A few here and there, but all in all pretty minimal. Then around 5:30 they start too increase until by 7 the mouth opening is going strong. When the evening is just about done, they are costantly going 1-3 seconds apart. It looks exhausting to me. He also starts the ear poking and blowing and saying his ears are clogged. (Obviously it is ticcing, yet something may cause it in his ear) In the morning he takes a long epsom salt bath-he is on Spring Break so we can take the time. Could it be wearing off by evening? I thought maybe dinner, antibiotics or baseball provoked it the night before. But definately not last night. If PANDAS, how long will it take for antibiotics to help and would it clear it all or just some? I know I maybe expecting too much to have a clear answer on this. It will probably depend on the child, yet imput is helpful. Thanks.

A doctor (DO/ allergy and immunogist) pretty much explained it the same way to me. It begins with the immune system and then affects the digestive system. I guess I am wanting to stop the process so Kelly- you are saying that you can prevent it from affecting the digestive system and prevent food intelorences: Is that with antibiotics? Is that what stops it? Also, according to Dr. Murphy's assistant, you are also right about the titer levels. She said they do not have to be raised to be considered PANDAS. It is the pattern. I just wish that the doctors would read the posts that we are all discussing. Or if they could come up with a way to stop the cycle. I hope they do and we will all be looking at these old posts one day and go, "Oh look, we were on the right track when we said ....."

Just more to add. You are so right. The doctor said strep is going around right now. Something to do with cold air warming up causes problems. And yes, that would have been the same thing last year-warm air vs cold. Also, after the initial outbreak last year, his allergies were very bad for awhile- that is why we started NAET. So I will take some deep breaths and stay the course. Thanks. Alright perhaps I will also eliminate that nasty salami too. Who needs that junk!!!

Thanks so much Kelly- your like a life preserver these days. And yeah!!!! I got the titers run yesterday. He was already on antibiotic for 24 hours. Do you think that will scew it?

He is just taking it with water. I thought I was on the right track with the antibiotics, yesterday day he was much much better. Of course it was a very mellow day with just me and him-no friends over, low excitement. Then last night he was bad again. He had baseball and the excitement oould have brought it out. although it started while getting ready for ball and right after taking antibiotics. It was also after dinner which was a salami sandwhich that he really wanted and I was trying to keep things mellow so I caved. Maybe nitrates causes him problems. When he first had his outburst a year ago, I cut out nitrates as he loved salami and I thought it could be the culprit. He ate a lot of it then and hot dogs. They have gradually snuck back in as they didnt seem to cause problems. here and there. Also, he was on Pen, but I got some Zithromax yesterday from his natropath which he thought would be better. I gave that to him last night before baseball. He said his tummy problems during ball. His natropath thought strep was in his system due to a test that she puts on his finger to tell.not blood- hard to explain. Should I go back to the Pen, stay on Zithromax, or stop antibiotics? I just dont know if I am on the right track now. It is all so frustrating. He also has been drinking a water- no juice or anything else I noticed. I didnt say anything to him about it, but last night he told me he feels like he has to drink water. I asked him if he is really thirsty. He said no, I just feel like I have to drink water. That scares me, what is that all about?? I usually restrict his "WII" system to a half hour in the morning and half in afternoon only on weekends. On Sunday he played for about 4 hours as he got a new game and I was gone most of the day-not able to superivise and the supervisor didnt restrict. Could the excitement of the new game and all the playing time have caused all this? Also I noticed an increase with the Pen when he would first take it, then die down. It is white capsule. The Zith is pink with flavoring and when he took that, it did not die down all night. I just do not know what to do. He was doing the mouth opening about every second. Thanks for anyones opinion. I just get really frightened when he is so bad. One other note, he got in bad trouble Sunday night- he usually hardly gets in any trouble, but his attitude was very bad. He was grounded from his WII on Sunday which caused him a lot of anxiety and crying. The tics slowly started on Monday, so did my sore throat. I cant figure out if it is the strep, Wii playing, nitrates or upset that is causing it all or everyhthing together. Uggghh. We are back to where we were last year-ticcing every second. One more note=sorry to ramble. It was about the same time of year as last year. This time March, last time Feb, that the outbreak happened. Could it be something in the air as he is an allergy child. We have done NAET to desensitize, but I am not if it worked. Thanks sooooo much for ideas. I just am at a loss as where to go.

I think I am beginning to see a slight pattern here and was wondering if anyone else has noticed this. My son seems to be much better today than yesterday since he started the antibiotic, but the first half hour or so after he takes it, his ticcing increases quite a bit. I would say 5-10 minutes after he takes it, his tics increase. Though he is doing better overall and almost tic free for quite awhile before I gave him his antibiotics, he tics for a short while after taking them.

The other thing I have wondered about, has anyone else noticed their child to have dilated eyes? For the last couple of months my sons eyes have seemed very dilated. They could have been before this and I just didn't ever notice. Yet they have definately been the last few months. Does this seem PANDAS connected?

Well, Kelly you must type faster than me as you snuck in two very helpful replies before I was done typing in to Faith's question. You have helped a ton. My doctor gave me Augmentin and his Pennicillin. I am just wondering what was stronger as I would love to switch. I am only half joking on that one!!! He has had a reaction to Keflex in the past 5 years ago so I worry about what to give him. Thanks Kelly.

Well, I would say that he started with frequent hand squeezes the same day as my sore throat. He has been pretty much tic free since the initial which was major ticcing a year ago. Aside from a 1 1/2 month eye tic that peaked with stomach bug. And a few one dayers of small tics for a total of 2 or 3 over the year. Anyway he began with a little emotional behavior a few days before my sore throat. Then me sore throat and him ticcing with hands. Me positive for strep/ him negative. It then went to what I am thinking may be a compulsion of trying to pop his ears. He said his ears were plugged and began holding his nose and trying to blow them open. I cleaned them and it did not help. He then went to opening mouth to sort of pop them and the nose holding and blowing. it has now mostly opening mouth quite frequently with eyes closed during this time and sort of eye brow raising sometimes nothing in an hour to sometimes every few minutes. He is on Bonnies vitamins and I have added mag taurate the last few days. He is doing epsom salt baths am and pm which only seem to help for about a half hour or so. I still see some hands once in awhile and the nose holding with blow, but are pretty much on the open mouth with eyes today and yesterday. What do you all think? It really seems to be tics or compulsion. Yet he does have trouble with ear wax so I cleaned his ears. Do you think this sounds PANDAS/strep case? He seems to be affected by video games and tv but only when sick.

Thanks Kelly, what are your boys on again for daily and what about if they have an increase? He had strep last June and after starting with a bathroom compulsion, pen did nock it out the first day. He tested positive that time. This time no. What is a stronger antibiotic- augmentin or pen? or are they the same? Thanks so much Kelly and anyone who can add. I am working on getting him into the doctor that was recently posted on in Vegas. I would take him anywhere if I just could decide which category he falls into.

After the initial onset of last year, my son has been doing fairly well-just a few small bumps. This week we are back to bad ticcing. I had always thought he had fallen into the PANDAS category, yet wasn't sure-still not. this week I came down with strep-3rd time in our family this year (which also makes me wonder about PANDAS). Anyway, he was negative, am waiting on swab results-no sore throat. I am hoping to get his blood tested today. I convinced doctor to start him on antibiotics yesterday. Started with Pen last night. I was hoping to see a reduction-ok I was hoping for them to be gone today, yet they are the same. How long does it take if this is PANDAS related to see improvement? Also they seem to be changed or added on to each day. What do you think causes them to change so frequent? Thanks all - any advice would help as I am about at my wits end (again!!!!)

Thank you for posting as I think it is almost a miracle. My son has been on this road for over a year now. His first explosion came one year and a month ago. I have suspected PANDAS all along, yet have not been sure or able to find a doctor. Little symptoms, but pretty well for the year. Fast forward to this week. I started with a sore throat. I noticed my son ticcing slightly 2 days ago. We both went to emergency to be checked for strep. Mine positive, his negative. Since yesterday he has been ticcing badly. The doctor wont give him meds, I am trying to get him to run the titres test. He doesn't know about PANDAS and even though I have brought him a lot of info, he doesnt really believe in them. Anyway, I live in Nevada, and for the past year I have been looking for a PANDAS specialist in Nevada. As I sat down to the computer tonight, my mind was thinking okay, I need a specialist for PANDAS, preferably in Nevada, but I will travel anywhere. I then clicked on and read your post of the doctor that treated your grandson in Nevada. Could you please tell me his name at Sunrise Hospital as I will be calling there ASAP.. Thank you and I am glad your Corbin is doing well. I am thinking that sometimes we are sent to the place we need to be. Oh, I just saw that you did have his name. Is it Doctor Johns and Doctor Scott at Sunrise? Thank you sooooo much. I will be calling there tomorrow. Also, can you tell me if Corbin has been put on Penicillin profolacticly (not sure how to spell that sorry)? or is he just on it for a short time? Also, do you know if he ran the strep antibodies test (titer levels) and if yes, was he out of the normal range?

My son seems to have a problem with ear wax. One time he was poking his ears many times and I thought that was a tic. We went to the doctor for something unrelated and she said he had a lot of wax and she cleaned them and it stopped. Periodically he will open his mouth slightly and I onced asked him why and he said his ears were clogged. Cleaning them stopped it as they will get clogged with wax and he is trying to pop them because he can't hear well. Could that be the case? Glad to hear your son is doing well.

Hi Kim, I will tell you that all this did send me searching on the computer and I panicked as I read about something called neurofibromatosis 1. I thought if my son had 3 caffe latte spots and my husband had a bony tumor was I once again looking at something that my son could have? Anyway, as I researched it, I then realized that it was not even a bony tumor and more of a fatty one. A little bit of relief for me! I did read a little about alternative treatments for fatty tumors which mentioned toxins as a reason.

Just to clarify, after thinking about it, my husbands is not a bony tumor, but a fatty tumor on his back. It is not located near a bone. My sister was diagnosed with Factor V. Mine was diagnosed as the antibody one. I always found that suspicious as I thought they were one in the same problem.

ok, I still am trying to figure it all out- with a busy 3 yearr old on my lap. I am just glad Kim is "on our team". anyway, the only other thing that jumped at me was the heparin regulating thing. It talks about this gene being responsible for that and I know I have seen people talk about a blood clotting disorder on this forum as well. I have that and had to take heparin when pregnant. My poor children possibly got the screwed up genes from both sides. My sister also has it and her son was born with a raised red birthmark on top of his head. Just throwing out any info which I hope helps.

Im sorry it took me awhile. Somehow I missed this one, but it now has me interested and nervous as my son has 3 cafe latte spots on him. I can't figure out what you are posting, but please let me know if you figure it all out. I havent noticed my husband to have a birthmark of any sort, yet he has the bony tumor.

Has anyone tried the optimal dose shots or drops? I was considering those as allergy help. Tribuano- do I understand you correctly? You have one child who is PANDAS and another child who tics due to allergies only part of the year? I am not asking to be nosy, yet I am trying to figure out if this could be the case with my son and husband. son-PANDAS where husband is due to allergies.

One question while I have all you PANDAS moms ear. I believe my son is PANDAS. His initial symptoms came after sore throat-1 week after. Possibly strep, but doctor didn't know of connection-so no test. 3 months after initial symptoms he contacted strep again. Began with frequent urination and sore throat. This time I had him checked and started Pen V. Urination frequency stopped and no tics-all well. Now I see a few tics with illness non strep related, but I don't really see tics otherwise, only once or twice for one day oover the whole year. Would you push for daily or weekly antibiotics or wait and see? Would you push for antibiotics during unstrep illness?

Well, I hope for you both the best. I have a friend who has an autistic son. She says she was ready for a break down 4 years ago, but is fine pretty much every day now. I have come to realize now that my son does not seem to have the problem anymore as he thinks nothing of the tics and really doesn't seem to have any very often. So I guess it is me that is having trouble with it. I guess if my friend is fine now and her son is autistic, then I have to just get over it too. Oh well, just venting. .

How funny, I just came back from the store where I was looking at a Zyrtec bottle. I am actually afraid to use anything. I bought an air purifier, have had him do NAET for the allergies he tested positive for, bought an ultrasonic air mist for nose congestion, and he uses sinus rinse by neil med that the allergy doctor recommended. His allergies have always been mild to moderate so not horrible and they seem to mainly be in his nose-stuffiness. I don't know- I guess since last year was his first year of tics and his allergies were not so bad, I just focused on more of prevention. I am thinking of looking into some sort of nasal spray that maybe is not an antihistamine if needed as I believe that the antihistamine is what some of these kids react to. If anyone has thoughts on what to use, I would be happy to hear. I am hoping that spring does not bring on more allergies as I am paranoid to use anything now.