P_Mom

Hi All, Tanks for taking the time to reply to my posts. I have got such a fire burnig under my butt right now with just EVERYTHING from vaccines to very unhelpful doctors that I was actually entertaining going to med school last night! Wow, that would be something to go from a basically stay home mom to a doc at 38!! I am sure if all these doctors who just want to medicate our kids, tell us vaccines are nothing to worry about, "just tics" nothing we can do, just wait and see, well, I am sure if these doctors lived what we lived and saw what we saw they would change their tune!! Anyway, just to respond to a few things. I do not believe at all that there needs to be an immediate connection or reaction to a vaccine or illness to have these neurological problems take root. From what I have seen, these shots or illnesses get the ball rolling and prime the immune system to an over reaction in the future, or, very shortly after, depending what stage of the process you are in. So, a shot given at say, 2, with no effects, may very well have developed the immune system problem and antibodies that will then sit dormant in the system waitiing for the next trigger (illness, shot, allergy, etc.) to set off the tics, behaviors, etc. And it could be years!! Also, as far as us with the No Shots, I stand absolute with my decision. For me, it is a no brainier. It is like this..... imagine you go to your doctor and he tells you you need to take this medicine because it MAY help you from getting sick. He then says, but, I can tell you that if you take this medicine, you WILL have a severe neurological reaction that will definitely be acute, and, it can mess you up neurologically for life. But, on the other hand, if you don't take this medicine, there is a very small chance you may get an illness someday, which, will normally be no big deal, but, just MAY be seriuos. For me, heck no, this is a difference between a GIVEN reaction as opposed to a possibility! For MY kids, no way, I already KNOW they have neurological problems which I KNOW vaccines are BAD for them, the other alternative with not vaccinating and POSSIBLY contracting an illness, well, it just doesn't compare for me. I do realize everyone is different and has different views and wants to do what is best for their kids, this is just my stance. If I had to do it all over again I would not vaccinate, I could just kick myself for it, my husband always did say he didn't trust those things, but, what did we know. We trusted the docs, even when I was concerned about them from what I had been hearing about Autism, my doc almost laughed and said there is No connection. UGH!!!! My kids are 5 and 8, they have already had MANY shots unfortunately. I will not subject them to it again. Their lives are in Gods hands anyway, he can protect them much better than any shot anyway! I wish I had realized that earlier and didn't go with what people said and pumped them full of that garbage! Ugh! Told you I have a fire lit under my "butt!" Kelly Wouldn't it be interesting if we could actually pull together an ACN forum get together somewhere, and then had reunions every few years or so. Just a thought, it would sure be nice to meet everyone!

Hi Everyone, I just felt compelled to write because I have made some breakthroughs and discoveries regarding my two boys. First, I remember when my older son was 5 and going through a sudden, pretty decent stuttering phase. This started in the spring and he was about to start kindergarten, so, we took him to a speech pathologist to be evaulated. He did perfect in the evaluation, didn't stutter once, but, promptly began to as we left the building. Sound familiar. Anyway, I said my prayers for God to let me know if he needed help while he was in there, and when he did great, I had to follow that answer and trust he didn't need help. Anyway, the stuttering dissappeared before school and all was well. (see, God didn't let me down, of course). Anyway, since all this has been happening with my younger son also, (PANDAS), I have really been putting pieces of the puzzle together. I sent for the kids medical records, had a hunch, and just checked this yesterday. Low and behold, just as I suspected, what did my older son have the beginning of spring shortly before the stuttering started? Yep, his 5!!!!!! kindergarten shots! Coincidence? No way. I am 1000% convinced these vaccines caused my kids neurological problems. Yes, I also believe there is a genetic predisposition to it, but, these vaccines given so many at such a young age, I think these kids develope an immune reaction and antibodies that don't function properly and create these problems. Man, I feel guilty taking my kids to get these shots. I thought I was helping them and just doing "what I am supposed to do." Anyway, as I think I have heard a poster say before, "over my dead body", my kids will have NO more shots, vaccinations, etc. Ryan is 8, and Ethan is 5 (he has not had his kindergarten shots, nor will he) I am not so sure it even has to do with the other crap in these shots, (mercury, etc), as just the sheer fact these tiny kids are pumped full of multiple viruses at a time, with an immature system, and boom, stuff goes haywire. Since the first stuttering episode, we had no problems with my older son until this past summer when strep brought on some tics and mild behavior issues. He now will tic (mainly mildly) and stutter when he is ill. We just had his blood work done a few weeks ago, 6 months after strep, and his ASO is borderline, antiDNAase B, negative, but, he is also 99.9% symptom free. I also know when he is ill and tics, etc., there are triggers. T.V., STRESS, excitement, homework, and I believe artificial food coloring. When he is healthy, he can tolerate these things without a problem. Now to my younger son. Same shots, same doctors, etc. Got strep at age 3, mild ocd behaviors emerged. Thought it was strange, but, it wasn't really that bad and went away. Two years later, strep again (this past summer), and this time a severe reaction with bad OCD and bad vocal tics. We were just completely taken out by this for a few weeks, and by my own research, I discovered PANDAS. 3 months after onset, he improved dramatically and when I finally got his blood work done, both tests were negative, but, that correlated with his symptoms being gone, he is PANDAS. Neurologist did nothing, no one really helped. (we have help now) Now, he has been sick three times since this past strep and he gets an increase of symptoms every time. Got blood work done a few weeks ago, and his ASO was higher this time 6 months after strep than it was 3 months after strep, (and he hasn't even has it since.) So, when ill, many, many illness still cause a rise, although much milder, in his strep titers and cause symptoms. He also has triggers when vunerable, t.v., excitement, stress, and with him I am just beginning to think he may be sensitive to salylicites (spelling). He gets red ears, increased vocal throat tic, short temper, etc., and it seems to happen after Oj or tomatoes, or grape juice, etc. Humm......... so many pieces to this puzzle. Anyway, I am convinced that tics, TS, PANDAS, are basically one in the same and are the result of an immune system problem, even when said to be inherited, I believe the inherited problem is with the immune system and not any particular gene (which they are STILL looking for). Just because Dad, grandpa have tics, it can still be an inherited immune system problem. Yes, a spectrum disorder, some tics, behaviors lasting a short time, some lasting into adulthood. Whatever the culprit, allergies, infections, etc, this is all immune stuff. (allergies are the result of an autoimmune problem). When neurologically taxed, this stuff puts these vunerable kids over the edge. Now, I was told, "just tics" also, it will probably go away,. Well, I went and got an antibiotic for my older son when he suddenly started ticcing (after I was told just to wait it out), and the antibiotic cleared the tics. This has happened twice. (he was ill both times, not strep the second time) If I would have listened to the doctor....... who knows. How many kids are suffering from these things and being told, "just wait it out, " when indeed, there are safe, effective treatments for these kids!!! I DO NOT by any means think strep is the only culprit, I believe any virus, bacteria, allergies, etc., can cause this reaction. I think it is just that strep can cause a more sudden, severe reaction, and therefore has FINALLY gotten SOME recognition. Oh, the blood work showed my older son was also dealing with the Epstein Barr virus also. We would Never have known if it weren't for the blood work, kids don't show many symptoms with it as opposed to teens or young adults when they get it. Blood tests should be a STANDARD for kids with tics, etc. You never know what is floating around in their systems. There are antibodies involved in the Epstein Barr virus that rise and then stay elevated to a certain level for life! Could these elevated levels cause TS in predisposed kids? Man, so many things to think about. I really don't believe the neurologists really have a clue. We need to look at the immune system!!!!!!!!!! Okay, sorry so long, I didn't mean it to be, but, then I started to vent, I'll catch my breath now. Just a side note, both my kids are doing very well right now, nothing really worth mentioning. They are both on prophylactic antibiotic becasue strep is the big bad guy that we want to definitely do our best to avoid! The other illnesses create milder symptoms which, although not fun, they are tolerable. I thank God every day for my kids and for every day we have. I know we will get through this, one day at a time. I have learned so much from this experience, and our lives have been changed. (for the better, if you can believe that!) I definitely prefer the good days, but, I also know I have to accept the bad and keep hanging on, even if sometimes it is just by my fingernails......... God Bless you all! Kelly

Alyssa, I was just wondering if you still check these boards, if so, I'd like to talk with you. Kelly

Hi.. if the tics came on out of the blue... has he been sick? You should get him tested for strep just in case even without symptoms.

Mark, Turmeric and curcumin are one in the same, curcumin being found in Turmeric, turmeric being found in Mustard and it is the Curry spice. Anyway, with PANDAS, I would highly recommend you try a round of antibiotics to see what happens. It can't hurt! Ask your doc for a round, Azithromycin is a good choice. Yes, when this PANDAS thing hits, it hits hard. My son had sudden onset (almost overnight) severe ocd/vocal tics after strep. Had he have been in school he would have had to drop out temporarily also. My husband and I were on our knees with this, our kid changed drastically right before our eyes. (he is only 5) Antibiotics really help control the symptoms while they are there, as well as supplements. He is currently doing very well and is on prophylactic antibiotics and takes some supplements. (fish oil is a big one) In the event of another big flair up ( I pray this doesn't happen), we will do a full dose antibiotic and I also have our Doctor on board for a steroid burst to alleviate symptoms quickly if needed. Our docotr is also on board for IVIG if needed, now, I mean ONLY if antibiotics and steriods no longer work. IVIG has been show to actually cure this condition in many cases, it readjusts the immune system to proper functioning. Check out www.webpediatrics.com, it has great info. on PANDAS and PITANDS. This doctor is very helpful and will answer your e-mails asap. Kelly

Hi! Just to let you all know if you hadn't seen the post about it yet. There are warnings on video games, for sure Xbox games, and I also saw it on a PS2 game I WAS going to buy for my son. Anyway, it states that video games can cause "seizure" like disorders, even in people where no previous condition exists. Check for it on the back of your games, or even their web sites. The older games may not have it posted yet, but, I believe it is mandatory from now on. Aslo, kkver, what dose and how often do you give the Azith? Any yeast problems or other problems with it? Do you up the dose with illness (even viral) and does it work? ThANKS! Kelly

ad ccl, Sorry, forgot to ask. How old is your son? Have you ever had yeast issues and do you do probiotics?

Thanks. I am asking because I want an idea of what to do if I see an increase of symptoms. Right now we are on Pen VK and so far so good, I just want to know about Azith "just in case." When you give 500mg, is it in two separate doses? Do you give a full round even with a viral illness, and does it still help?? Thanks! Kelly

Hi! Just a question for those who have children on Azith prophylatically. Do you give your kids a 500 mg dose? The article from NIMH says to give to kids it once a week, twice in a day, but, I have heard people give it once every 5 days, twice in a day. What do you all do? How is the "full dose" course given? THANKS!! Kelly

Is it possible that too many supplements can cause a problem ? Have you ever tried going off the supps. to see what happens?

Hi Cheri, Not to add confusion to anything, but, I noticed something in one of your posts that I felt I needed to reply to as to avoid even more confusion. Corpolalia as being specific to TS, well, I am in touch personally with a PANDAS Mom whose son had mainly Corpolalia along with some OCD in his first (and only) PANDAS episode.(I have also read of several other PANDAS cases involving Corpolalia.) His titers were off the charts and he is definite PANDAS. He received IVIG is is symptom free so far for 2 years. There is also a documented case of the girl, Frances, from the NIMH study who displayed complex "spinning like a rope is tied around me and I have to loosen it" tics, and she was confirmed PANDAS. I guess it seems to me there are no specifics, maybe I am wrong. I do have growing suspicions that the inherited TS "gene "(which they STILL have yet to identify) may well not be a gene afterall, could TS be caused by inherited autoantibodies, or an inherited immune system problem? Could it be that affected generations all had this immune problem, presenting in various ways and passing it down? Don't know, just throwing it out there! Thanks for all that you do. Kelly

Hi, Sorry you are going through such a tough time, I do understand. When my son first exploded with ocd/tics, I was a mess and had amny days I felt like I wanted to run away. So, you are not alone. It sure does sound like PANDAS, did you have her blood tested when she was symptomatic, or, were the tests done later when things calmes down? Also, remember, other viruses/illness can cause the explosion, not just strep, like mycoplasma, etc. What kind of illness did she have????

I knwo EXACTLY how you feel. My heart sank when the part about the preventative antibiotic wasn't filled in also! Plus, we are in the same boat. No treatments right now, everything is okay RIGHT NOW, but, what happens next? Hate to medicate when not necessary and potentially cause other problems, but.......... can't imagine leaving these kids vunerable to strep and more attacks! I am leaning to the strep and the attacks on the brain being the bad guy as opposed to preventative antibiotic. Kelly

Hi all, I received this link from a Mom with a child who had PANDAS and received IVIG. He is believed to be cured, no symptoms in two years, even with illness. Anyway, I did see this site a long time ago and haven't been able to find it again. I wonder how many of you have seen it? It is a site designed by a mom whose daughter has PANDAS and was in the study at the NIMH. Very interesting and informative, I encourage all of you to check it out. Kelly http://e-pandas.com/index.html

What is the difference between digestive enzymes and probiotics?

Michele, I am trying to send you a personal message, but, can't because your in box is full. Could you make some space for it! Thanks, Kelly

Emily, How is your son doing after starting the antibiotic this past Monday?

I agree with bmom, sounds like separation anxiety which is a MAJOR symptom of PANDAS. Please let us know how the strep testing comes out!

Michelle, PLEASE let me know how the appointment with Dr. Berger goes!!! Take care! Kelly

Did you use Zithromax for the 10 days? Do you do preventative antibiotic? Does he have any other issues? Thanks for replying.

Hi, so you know it is good news for no increase in symptoms with viral illness. How is your son doing this time after strep? Are the tics worse than the first time with strep? Is he taking antibiotics? Thanks!

Hi, Hope things are looking up for you and your daughter. You mentioned her "strep titer was normal, but antibodies were very high." Which titer was normal, and which antibodies were high? Also, your son had strep, right? A PANDAS child can get the same symptoms from just being exposed to the strep, also, PANDAS kids often show no signs of strep. If your son had strep and your daughter showed increase of symptoms, I would get her cultured for strep. This may be why the SSRI seemed to stop working, the strep exposure. Have you tried antibiotics? Kelly

Hi Emily, Couple quick questions, what antibiotic was your son on (and how much), when he had his tooth problem? Which are you taking now for three weeks? Is this three week dose for an infection, or for the tics? Take Care, Kelly

Hello Everyone! I hope everyone had a Merrry Christmas and here's to a GOOD NEW YEAR!!!! Anyway, I thought I'd post my recent experience with my PANDAS son and the Flu. Three days after Christmas, my PANDAS son came down with the Flu. Fever, headache, cough, etc. This was the sickest I have seen him in awhile, he usually does not get very sick with illness. Anyway, I was very much on edge because of the whole PANDAS thing and PITANDS, you know, how after the initial strep, any illness can trigger an exacerbation of symptoms. I had been wondering if this would be my sons case, well, much to my delight, and answered prayer, my son showed NO increase of symptoms, no ocd/tics etc.!! He was a bit grumpy, but, who wouldn't be, he had the flu! Well, I just wanted to post some good news, I know how we all desperately need to hear it sometimes!!! Extremely Grateful here Kelly By the way, seeing Dr. Berger in Ohio on the 16th. Will post my experience afterwards. I have a good feeling we will finally get the help with PANDAS we need, whether it be treatment or no treatment. I am very much trying to learn how to give this over to GOD. I KNOW he has us in his hands, I KNOW he knows what is best and that there is a reason for all this (this has changed our lives, and has also answered prayer (too hard to explain) , I want to give it to him and follow his lead, instead of frantically trying to control and solve this myself, which I can't. This is my obstacle now, I have always been a person of control, and always trying to find the answer to fix everything, now, I am really trying to learn how to give up that control, STOP WORRYING, and let God handle it. This is a big change and difficult for me, but, I know I ned to make the change, I will just pray every day for God to help me. Can anyone relate?

Hi! Sorry to hear of your problem with your daughter. I just wanted to let you know that there is active discussion on PANDAS/PITANDS under the Tourette Syndrome/Tics Forum. Please look there, you will find a wealth of information. God Bless!!!! Kelly