zazuk2010

Hi, We did a listening program for both our boys. It was called the Tomatis Method. We did it several times a week for almost 6 months. It was expensive. But in the end, it was life changing for one of my sons. The other did not show much outward signs of improvment but then the truth is that he did not have the same problems and his issues were not focus based. My son's were 5-6 at the time. They are now turning 7. The benifits have lasted and I would do it again in a heartbeat. I am even thinking of trying again with my other son becasue at the time we did not know that he was going untreated for a mycoplasma infection. Once he was treated for that many things got a lot better. Perhaps given his current state of good health he might get more out of it. PM me if I can give you any other info that may be helpful. Best, Kari

We just had a breakthrough with Azith for DS6 (Jack). My other DS6 (Nick) is on Augmentin. He got sick (and so did I) within a week after visiting the east coast! Not sure if we got it there or perhaps on the plane? But it makes sense there was most likely a connection. My DS6 on Augmentin never got sick! We kept Jack on the Azith and added Penicillan. Seems to have worked, we are having him rechecked this week. My plan is to now take him off the Penicillan and stay with the Azith. It has worked so well for us for almost 2 years I don't want to mess with it. Kari

Hi, I just wanted to share good news for a change. As many of you know, my twin ds6 could not attend kindergarten without me last year thanks to PANDAS. While the school was kind enough to allow me to stay with them in class every day, given the circumstances, it was as you all know a very difficult time in all our lives. I have worried all summer about what to do this school year. I decided to try school again knowing in my heart that if they could not make it, we would just homeschool as best we could. I was up all night scared of what today would bring. I took them to school expaining, as I have for weeks now, that the plan was that I was going to walk them to class, kiss them goodby and they would push me out the door. When the bell rang and they smiled and told me to turn aound I could not believe that I felt 4 little hands on me actually pushing me out the door. Both my ds6 began first grade today. When I picked them up they could not stop talking about how much they love school! Today I just cried like all the other mothers. bitter sweet tears just becasue they are growing up so fast. It's a heck of a lot different than all the tears I have shed the past 1 year +. Thank you all for the support. I don't think I could have survived this so far and so well without all of you. Best, Kari

Hi Melinda, It was a Positive IgM. we tested for Mycoplasma P. back in June of 09. Both kids were negtive. When we tested again we tested for the original test that I guess was not the IgM and the IgG because the original came back negative again but the IgM was positive in one son. He was the one who was not reponding to the IVIG as well (although he did respond alot and things were much better). We then put him on Bioxin but after about 30 days he seemed to be more aggresive and we believed that was a reaction to the Bioxin so we switched to the zith liquid. 240mg per day (he weighs 48 lbs.) And that is what we will continue on with. Kari

He gradually improved. Then it seemed suddenly he was completly better. I am not sure if that is because of just the zith finally working or because several things happend at that time. Most notably I had an eye infection and went on a z-pack. At that point I had to consider that it was not coincindental that I went on Abx and he got better. I have since gotten a bunch of blood work done and am waiting for the results. Have stayed on the abx just in case I have been the culprit all along (I had been tested for Strep but nothing else such as mycoplasma). The other two things I did differently were that I took him off all yogert products because of the Strep they have in them. He was addicted to Keifer. I mean he could drink a pint every day if I let him. The other thing I did was take him off all nut products because I read that they were not recommended if you have mycoplasma (and he did) and I had been giving him a lot of peanut butter over the summer. Not sure what made the difference exactly. But, I can tell you that while I am still holding my breath every day (hour) expecting the other shoe to drop (or in our case the other shoe to get thrown at me from across the room when I say no to something he wants and he has a horrible tantrum) he is like a different child. We are going to re test him for mycoplasma again to see if he is over it. I do plan to keep both kids on the abx for some time to come. Hope that helps Best, Kari

Just wanted to let you know that we saw the cardiologist and while he does have an irregular heartbeat it is nothing to worry about (at least that makes one less thing to try to fit into my already overflowing worried mind). Very relieved. Interestingly he has seen 4 kids with PANDAS just in the last month. Their issues were not related to PANDAS but it was clear to him that this is widespread and growing. He did not feel my sons irregular heartbeat was caused by the antibiotics although that is, in fact, a rare side effect. Just something to watch out for and check out if need be. Best, Kari

Made me really smile! I remember the first time post PANDAS that one of my sons 6 told me he was going to go into another room by himself to watch TV. This was impossible for him pre IVIG. He left the room and I burst into tears. He got better and better after that and remains great 10 months later. So happy for you all. Kari

My Ds 6 has been on zith since we found out he had a co-infection with mycoplasma 3 months ago. He was diagnosed with PANDAS in May 09. Until then he had been on Augmentin and we did 1 IVIG last Oct. He was deffinitly better after the IVIG, but not anywhere near baseline. Finally, the zith has worked incredibly well and I can now say that for the last month he is 100%. He even had a bad cold last week and not one sign of PANDAS (that has not happend since all this started). Night before last I noticed he was breathing somewhat fast in his sleep. I put my hand on his chest to feel his breathing and felt a very irregular heartbeat. It was not slow or fast, just random. It had no pattern at all. 2 beats then 4 then 3 then 5 then 2 it was all over the place. Needless to say I stayed up all night watching him sleep. Took him to the doctor first thing in the morning. The doctor heard it too and is now sending us to a pediatric cardiologist. I am hesitant to look on the internet until we see the doc as I know I will just scare myself to death but I did look up possible side effects of zith. Yep, irregular heartbeat! Wondering if anyone else has noticed this, heard of this, etc. Also wanted to post so that if you are on long term abx you might want to check it out. This might have been going on for a long time and I did not notice. I never even considered checking my childrens pulse. FYI- my other son also 6 is on long term Augmentin. Of course I listened to his heartbeat too and it is normal. I will let you know what happens at the doctors this afternoon. Best, Kari

I have not had it in me to check myself all year. Then had some eye problems. The many docs I went to could not figure it out and I knew it felt like an infection so I took a z-pack I had at home. I got better, but more importantly.....my son was the best he has been since PANDAS hit May 2009. I have now had a ton of blood work to see what is really wong and perhaps if I have been givng him something all along. (I was tested for Strep a long time ago but nothing else). Of course I am so happy to see him feeling so much better (he even had a cold last week and slide thru it without a sign of PANDAS.....that has not happened once in over a year) But feel terrible at the thought that I may have hindered his ability to get better. I guess my point is that there are so many important reasons to take care of ourselves. We just have to make the time even when it seems impossible. I wish I had made the time earlier, even just a check up might have made a difference. Good health to all of us! Best, Kari

hi, not sure about the dose. my son is about 50 lbs. He is on 240mg of zith a day. Using the pink liquid also. He drinks the probiotic Bio-K in the AM (half a bottle, it does not taste good, but he gets it down and he is somewhat used to it now) then at night we mix FlorStor (not sure of spelling right now) in the capsule. We break the capsule open and mix it with peanut butter and he has no problem taking it. Then we give the zith before bedtime. So far he has been on the zith for several months without any bad reactions. My other son is on daily Augmentum and we do the same routine and we have not had problems there either. Hope that helps. Best, Kari

Just wanted to let you know that we did the 5 day steroid burst several months before we did IVIG. twins with PANDAS. one responded very well to the steroid and the other one did not. the one that did not respond at all did great after the IVIG. He has remained well since October when we did it. The other did get better but had a co-infection with mycoplasma and we are now going to do another IVIG. My point is that the steroid was not indicative of how they each responded to the IVIG. Also, the son who responded well to the steroid did not show improvment until 12 days after we started the 5 day course. In fact, he got a little worse during that time. We have done the steroid twice now and have had the same experience both times. Best, Kari

Hi, we are doing IVIG with our ds6 on Tuesday. Had a very bad reaction when we did it last October. Considering steroids to help with any reaction. If any of you have done this can you tell me what kind you used? When you gave it? And how much you gave? The doctor is suggesting Decadron. Said that it is given to patients that have a risk of brain swelling during various treatments. I remember hearing somewhere that Dr. K does not like giving steroids (or extra IV fluids) during the IVIG. Has anyone else heard this? And if you have heard it do you know why he feels that way? I sent him a e-mail (we consulted with him in the beginning) but have not heard back. Thanks for any thoughts. So worried, I am trying to do everything and anything to avoid him having the same terrible reaction as last time. I feel stuck between a rock and a hard place. Need the IVIG to get over the hump but feel like I am hurting him at the same time. Makes me feel sick inside. Best, Kari

Thank you all so much. I swear just knowing there are moms out there that know what I am going thru is a God send. When I read your notes I suddenly felt like I could breath a little better. In the meantime, my boys are sleeping at my moms tonight without me for the first time (a miracle really as even leaving them to go to the market is typically tramatic since PANDAS). My dh and I have never spent the night in our house without them. It's strangly quiet. I am going to go to sleep tonight just being thankful for the small steps to recovery and maybe tomorrow I will have a clearer idea of what to do. By the way fcefxer I am going to look into what you said about the lower dose. Will let you know if I learn any more about this. Thanks again, Kari

Hi. As many of you might remember, I have twin sons (6) with PANDAS. We did IVIG with both of them last Oct with great success. One son has gotten better and better since then and is leading a life with little evidence of PANDAS. The other son did benifit, He got worse for the first week then the horrible tantrums stopped. While still often defient and quick to get upset the most extreme symptom is the anxiety. It was so bad thru the last part of the school year he was unable to attend kindergarten without me (I was allowed to be there and we got thru it) We did find out a few months ago that he had a co-infection of mycoplasma. Changed antibiotics to Bioxin then Zith and he did improve (I was able to graduated from kindergarten thank goodness). Still not to the point that his life is not greatly affected by PANDAS. Up until the last two days I was convinced he would not make it to first grade without more help. Have an IVIG scheduled for this week. Suddenly he seems better than he has been in a year. I am so confused about what to do. When we did the first IVIG we kept the kids mostly home for several months (it was flu season) and I have always felt that it helped because they were not exposed to anything else during that important healing time. I had hoped to give him a least a few weeks after the planned IVIG before he is subjected to a lot of other kids etc. If I wait even another week he will not have much time to adjust. What if he has a bad reaction and we have to have time to get thru it etc.? If I don't do it now and this is just a saw tooth temporary "summer" break from this terrible thing then I fear I will run into all sorts of other problems with school starting etc. If I do it and he has a reaction and gets worse It will be hard to forgive myself for makeing a decision that will hurt him. My husband thinks we have to do it. Dr. T feels that he has a compromised immune system so we should do it (although he has never been a kid who gets sick a lot) I know so many of you have seen a backlash of symptoms following IVIG for some period of time. If it turns out he really is finally better and we do it do you think it might be less likely he will have a bad reaction? I can't sleep worriying that whatever way we go it is the wrong way. Any suggestions will be so appriciated. Best, Kari

We did a listening therapy with both our sons (just turned 6) called Dynamic Listening. It follows the Tomatis method. When they first started, they were tested and it was amazing to see the results. One of my sons had the sound coming in one ear and he heard it in the other. His brain mixed it all up. The other son also showed problems processing what he heard but it was not as dramatic. The method is used with many children for lots of reasons including ADD, Autism etc. I was skeptical and absolutly schocked with the results especially for the one son. Previously, he had always been the kid that would drop everthing, spill everything, get easily frustrated when he could not do something. Scream in frustration a the drop of a hat (no punn intended). I had to ask him to do things over and over and over. Within 6 sessions of the therapy he was a different child. It was truly life changing. His interest in learning, his ability to focus, his willingness to try new things has all changed. Even his athletic ability and his coordination is highly improved. To be honest, I am not sure yet if the therapy had as dramatic an efffect on the other son. During the time we were doing the therapy he had Micoplasma and we did not know it until recently. Now that we are treating it he is much better, but it is harder for me to tell the difference in his listening or rather his managing and processing info. We are now finished with the program. We did 90 hours in all. The boys basicly would wear headphones and listen to classical music while various sounds were playing in the backround. They played the whole time and did not mind doing it at all. We are in California and did it with a company called Dynamic Listening Center in Santa Monica Ca. I am sure there are other places thoughout the country. You can google it and read all about it. It was pricy and insurance did not cover it.....what a schock! But looking back on it all, I know for certain it was worth it for us. Hope this is helpful. Best, Kari

Published: Wednesday, April 21, 2010 - 10:33 in Health & Medicine A Virginia Tech biologist proposes to use a physics strategy called resonant activation to nudge dormant bacteria cells into a stage where they will be sensitive to antibiotics. In medicine, resonance means the sound the doctor hears when he or she thumps your chest. In physics, resonance is a periodic force or an oscillation whose frequency is close to that of a natural system's frequency. Sound waves are an example of a natural system that can be altered with resonant activation. Jianhua Xing, an assistant professor of biological sciences at Virginia Tech who has studied more than a smattering of physics, was considering the problem of antibiotic resistance when he remembered a physics paper on resonant activation that he had read as a student. One strategy bacterial colonies use to survive antibiotics is to create a few persister cells. Because these cells are dormant or grow very slowly, they can dodge an antibiotic attack that requires active cell wall growth to be effective. Persister cells convert to normally growing cells at a random and slow rate so that there are always a few that remain dormant until the antibiotics are gone. Extending antibiotic treatment can be a dangerous strategy because of severe side effects, such as liver damage. Persister cells have multiple steady states, with fluctuations in the numbers of proteins as they transition to a normal cell. Xing viewed this fluctuation during synthesis and degradation of proteins as a potential target for resonant activation. Instead of a sound wave or electronic signal, the perturbing signal would be repetitive antibiotic treatment. Xing's student, Yan Fu, a second year graduate student in the Interdisciplinary Program of Genetics, Bioinformatics, and Computational Biology at Virginia Tech; and another student, Meng Zhu of the School of Computing at Clemson University, created a computer simulation to compare different strategies of periodic antibiotics cued to protein fluctuations in persister cells. Their finding that resonant activation – fluctuating antibiotic treatments – accelerates bacteria colony sterilization was published in the journal Physical Biology in March 2010 ("Resonant activation: a strategy against bacterial persistence," Fu, Zhu, and Xing. http://iopscience.iop.org/1478-3975/7/1/016013). Xing acknowledges that that the computer simulation simplified the problem by neglecting further complication due to mutation, but said he believes the concept has applications for cancer treatment. "On and off dosing with chemicals could be as effective as or more effective than long-term dosage. You need to stop and let the body recover, then resume," he said. He is particularly interested in conducting experiments to see if resonant activation could increase the efficiency of inducing a normal (somatic) cell into an undifferentiated or stem cell. "Bacteria mutate quickly, but there could be applications for cancer or stem cell conversion, where mutation is slower or not an issue," Xing said. Source: Virginia Tech

Thank you so much for posting this. My ds 5 had a horrible time with IVIG. So bad that we ended up in the ER for 12 hours. We think he got aseptic meningitis and that is why the headache was so bad. We are going to do another IVIG and I have been trying to figure out what to do to help prevent a repeat. This is great info. best, Kari

Thanks, that makes me feel a little better. I think we will, in fact, do it over break. He will be around some family members that are visiting, but I am going to try not to visit any crowded places. Just stay close to home. Kari

On the contrary, you are so on top of this. I can not tell you how many parents I have now met whose children should be checked for PANDAS and they just don't want to deal with it unless it gets worse. You are way ahead of the game. That will help your child no matter what happens. My boys were just turning 5 when they had their first symptoms. We got to a diagnosis fast, treated it aggressivly and while it did take a while for us to get to the exact treatments that worked for them, at this point, they are doing much much better. Now they are about to turn 6 in May and short of a few minor symptoms they are happy, healthy and thriving. Best, Kari

Ds5 (almost 6) will be doing a low dose 5 day steroid burst (Dr. K protocol) over the spring break from school. I have been told that the steroids will weaken his immune system making him more susceptible to getting sick. My questions are: 1. is this true 2. is it just during the days he is on the steroids or if not, how long after he is off of them is he still more at risk for getting sick. Trying to decide exactly when to do it and also if I need to keep him home and for how long. Appriciate any advise on this. Thank you all. Best, Kari

Yes, they both boys had their eyes dialated by a pediatric opthamologist. There was nothing unusual. Kari

forgot to add that they are both very sensitive to sunlight now too. It "hurts'" their eyes.

yes, lots of eye problems for twin ds's 5. Big black ball in his eye Eye hurts Feels lik there is an eyelash in eye Feels like there is "wind" in eyes (both eyes at the same time) Pulls at his eyes with finger Tries to "stretch" face to get rid black ball. Rolls eyes around to try to get rid of eye pain Worse when in exacerbation for both boys. Kari p.s. we were told occular migranes or imagination, until we finally figured out it was PANDAS.

Just wanted to mention that we did a steroid burst for both our twin ds's 5. It worked great for one , all PANDAS symptoms gone after 12 days (for at least 3 weeks after) but no reponse from my other son. We did IVIG for both 2 months later and they both responded to IVIG very well. It is still holding for the most part 5 months later. still have some symptoms, but nothing that is not manageable and the son with lingering symptoms is the one who responded well to the steroid. The other son who did not respond at all to the steroid is doing great since the IVIG. My point here is that while some docs say that the steroid burst is diagnostic and that if it works it is a good indication that the IVIG will work, if a steroid burst does not work to reduce symptoms, IVIG can still work well. Given what you mentioned about your Dh I thought you should know our experience. My Dh was skeptical after the steroid did not work for one Ds and I had to convince him we should try the IVIG anyway. Of course, we are SO happy we did! best, Kari

5:30 PM on May 12th 2009 (in a hip hop dance class). One minute before that Ds5 was fine. His twin 3:45PM May 22nd. 2009 (at the mall). One minute before that Ds5 was fine! Of course...now "fine" is not part of our vocabulary. "better" is what we hope for and work towards. Kari