zazuk2010

thanks Vickie. the night time idea is great. i will try it tonight. he is getting a little better about washing because i told him i had special soap that does not burn! sometimes it is easier to convince a five year old about things a teenager would sneer about as always, thanks. Kari

hi. yes, my son's first sign of pandas was that he saw a "big black ball" in his eye. took him to every kind of eye specialist and there was nothing there. later learned that it is due to pandas. my other son (his twin also with pandas) tells me his eyes hurt like there is an eyelash in there. both kids pull at their eyes and stretch their faces to try to "clear" what they see or what hurts. Kari

I missed it, but how could it possibly be that my 5 year old knew enough about the IVIG and his symptoms to change his behaivor overnight after treatment. Placibo effect? In a way I am glad I missed the whole thing cuz it sounds like I would have been so upset that I probably would not sleep tonight. Shame on him for being so narrow minded and self serving! Kari

Dr T has us taking a bunch of blood test this week. I will make sure they include Tyroid. Thank you so much. Kari

Looked up Selenium and found this. Dietary Supplement Fact Sheet: Selenium Office of Dietary Supplements • National Institutes of Health "People with acute severe illness who develop inflammation and widespread infection often have decreased levels of selenium in their blood" Kari

Thank you Allison, I will try that right away....cant hurt. Very interesting too! Kari

First Kathy, you are right it may be something besides anxiety causing him to do this, perhaps it is more like a tic. He started doing it about a month after IVIG. His rages were gone, but then he had anxiety we had never seen before. The finger/nail biting happens mostly when he is doing something passive like watching TV, sitting in school listening to the teacher, etc. Joanne, it is fairly consistant. Certain pandas symptoms come and go, but the anxiety issues seem to blur together going on all the time. Both my sons (twins with pandas) have been on Augmentin since last spring. After seeing Dr T just last week we agreed to change this son's abx to zith (250 mg). Last night was the first dose. Perhaps that will do it. I did give him a thing of chapstick this morning and he seems to be using it on his mouth instead of his fingers. I have previously tried a squeeze ball but that worked for only a short time. I am going to look into some natural things to put on his fingers, but I imagine he will fight me putting it on him. Thanks for responding. Kari

Hi, My ds5 1/2 can't stop biting his nails (what is left of them now) or his fingers. He does not mind when I remind him to stop, but if I turn around for even a few seconds, the fingers are back in his mouth. I know this is all a reaction to the constant anxiety he feels (of course we are woking on that). His fingers are all swollen and his thumb has almost no skin left. I am worried about infection of his fingers as well as the fact that every germ he touches ends up inside his body. His fingers hurt too (although that does not stop the biting). Sometimes he is afriad to wash his hands for fear that they will burn. We live in California and when we recently went east to see Dr. T his fingers acctually got a little better because he was wearing gloves throughout the day. Back home now and fingers bleeding again. Don't think it is realistic to have him wear gloves here not to mention that he won't want to wear them at school calling attention to his hands and having to answer questions about it all. Any suggestions? Kari

First PANDAS symptom for ds5 was that he made a streching kind of face and told me he was trying to get rid of the "big black ball" in his eye. Rushed him to every kind of speicilist I could think of and they found nothing. He was botherd by it and kept asking me to "wash it out with a wash cloth". He still makes that face (his tic) but does not talk about the spot any more. I think he just got used to it. He also knows that it is part of his PANDAS, so he sort of just accepts it without worry. (we told him about PANDAS from the beginning and he is comfortable talking about it with us and with others) His twin brother (also with PANDAS) pulls at his eyes often and says there is something inside like an eyelash that he is trying to get out. His eyes hurt him. I read a while back that a symptom of PANDAS can be visual disturbances. Kari

One of our twins responded very well to the steroid burst the other did not show much of a difference. The one that did NOT respond had the best result from the IVIG. The other has done well, but interestingly the symptoms he had prior to IVIG did go away (exsorsist tantrums) but other syptoms showed up that were not there before (extream seperation anxiety) and are provng hard to get rid of. We are now 4 months post IVIG and son #1 still holding and with son #2 we are trying to figure out what to do next. Considering an antibiotic change and/or another IVIG. Kari

Hi, I know exactly what you are going thru. Our son had the same type of explosive rages (I called them episodes they were so bad). A mom on this forum gave me some advise she got from the book everyone is talking about, The Explosive Child. It worked wonders. Here is what she shared with me. In the book The Explosive Child by Russ Greene he talks about how the child is usually giving a solution such as "I'm not going" rather than stating a concern "I'm afraid I won't know anyone." You say "you're not going. Why" You keep saying back to him what he's saying and it helps him unravel what the problem is. You keep repeating back to him in a calm almost monitone voice his statement and then add why? to the end of what you say. He answers back you do the same thing again repeating what he has said and asking why? The result for us was that our son (5) was somehow able to calm down after several questions.. I often felt like I could see his brain switching gears. Having to answer the question pulled him out of the emotion of it all. As he calmed down after servral "why questions" we were able to talk with him about what was reallhy going on. Then able to help him get what he needed. This method has saved us many times. The trick is that you must get it right at the start of a tantrum. If it goes to far you cant get thru to them to even ask questions. Try it. Good luck. And FYI- treatment has really helped our boys (twins with Pandas) and we have not had any "episodes" whatsoever for more than 3 months now. There is hope! Best, Kari

Hi, Just wanted to let you know that we did experience a very similar episode with one of our twin boys 5 1/2. (his brother also has PANDAS and had very different symptoms). We were in a mall and my son turned into a completly different person. I was so frightened that I called a psycologist friend of mine to ask if a 5 year old could have a sudden psychotic break. My son also was pulling at his eyes. He said it felt like there was something in his eyes like an eyelash. We had already been dealing with his brother's symptoms starting two weeks before that and had already seen every kind of specialist we could think of. When we finally came to understand that they both had PANDAS, our fist line of defense was Augmentin. Both boys were much improved within 24 hours. (their ASO was only slightly elevated and their titers were normal, we never had any sign of a strep infection or any illness prior to symptoms) That was almost 9 months ago. Both boys doing much much better. They are on continuous antibiotics and we did do IVIG 3 months ago. We initially got help from Dr. K in Chicago thru the phone. He never saw the boys but was a great help to us. My heart hurts for you. I know how scarey this all is. Just know there is hope, you just have to find the thing that will work for your son. Warmest wishes, Kari

Thank you all SO much. I have been trying many of your suggestions over the past few days. We have talked about the little dragon inside of them (talking to both boys) that is aftaid of many things. The dragon tells their brain to be scared because he does not realize that he does not have to be so afraid. I have told them that it is up to them to teach the dragon that they are "in charge" and that they are not going to let the little dragon stop them with his fear. They are teaching the dragon. They both named thier dragons ......very creative...."dragony" Sor far, it has worked in some situations. For example, my son was truly terrified to get into the elevator. He spent several minutes talking to his little dragon, comforting him and talking him (himself) thru it. We did get into the elevator and make it up 3 flights. My son felt great knowing he did it. It has also been an interesting and useful way for me to be able to talk directly to his fear and get answers and make suggestions. I am having a converstaion with his alter ego. School starts again tomorrow. I have gotten us stop watches. We have agreed that we will set our stop watchs when it is time for recess and I will go away from the class for 5 minutes. He likes the idea and seems excited to try. Again, thank you all. I will keep you posted. Kari

DS 5 has been on 1200 mg of Augmentin since IVIG 3 months ago. Still having terrible anxiety so we are going to try Zith. The Ped perscirbed 3 cc's liquid a day. DS weighs 48lb. Does that sound like the correct dose? Kari

Hi, We have come so far since all this started last May. Abx and IVIG have deffinitly made life livable for both our 5 year olds with PANDAS. With that said they were unable to go to kindergarten last Sept because of seperation anxiety. We stayed out of school until treatment seemed to get things under control. Started again two weeks ago. One son doing great and loving school (oddly he was the one who had the most trouble last fall) but the other is unable to be there without me. He even panics and starts to sob when I try to sit across the room. This is absolutly PANDAS in action which is why I refuse to just let him "cry it out". We have never had any problems in 3 years of pre-school and last Sept he was the one who was fine in school. We are very lucky in that the school has not only been understanding, they ordered 5 copies of "Saving Sammy" and most of the administration and teachers have all read it. They have been loving and kind and supportive to our whole family. They have let me stay in the class room all day for 2 weeks now. I keep trying to move my chair a little farther away from my son throughout the day and somtimes it seems that it is working and he feels ok. Then out of the blue he will panic and fall completly apart. At this point I don't feel that I will be able to leave the classroom any time soon if at all. My frustration is growing and I don't know what to do to help him. He seems to really like being there as long as I am there too. Any suggestions or ideas would be greatly appriciated. Even if I were able to set aside my other responsibilities and just go to kindergarten for the next 4 months, I don't think it is healthy for him to have his mommy there all the time. And what wil I do going forward. FYI- he has been on high dose Augmentin since the IVIG 3 months ago. All other PANDAS symptoms (rage, moods, tics) have been gone since then. I thought perhaps this new symptom of anxiety was being caused by an over growth of yeast so I increased the probiotics and took down the Augmentin dose. Interstingly, both kids seemed to sleep better and generally look better (dry skin and dark under eye circles went away) but the anxiety remained unchanged. Not worse, not better. Made me think that the Augmentin isn't doing much to fight off any strep that might still be lurking. Talked to our Ped and we decided to try Azithromycin. He perscribed 3 CC's liquid a day. We are planning on making the change this weekend. Considering another IVIG too. And no I am deffinitly NOT smarter than a kindergartener!! But I am learning a lot this second time around. Thanks for any help. Kari

I have mentioned this before on other threads. Both my twin 5 year old boys had thier first PANDAS symptoms 5-7 weeks after the Chicken Pox vacination. No other sign of any illness/strep etc. between the shots and the symptoms. I am convinced that the vacination contributed if not caused PANDAS. I took pictures of them the day of that check up getting thier listening tests etc. They looked so happy and healthy. I recently saw those pics and wished so badly that I could turn back time and make another choice. At this point, my kids will not be getting any other vacinations. I think it would be intersting to take a poll of people who's kids have PANDAS and have not gotten any vacinations. Kari

From a friend who has twin 11 year olds with PANDAS. Kari

Thanks Vickie, My son weighs about the same. I will try it and see what happens. Unfortunitly, my other son really needs it too but is alergic to motrin. Kari

Can anyone give me an idea of how much IB to try with my 5 1/2 year old son? Also, do you give it for extended periods of time or only when things are really bad? Thanks, Kari

Hi, my boys (5) were also terrified of both the blood draws and IVIG. We did the numbing cream. The trick was though that we had to put it on at least a 1/2 hour before and cover it with an airtight clear bandage. That was what made it really numb. When we did IVIG, they both screamed and screamed until the needle went in and they both looked up and said "you mean that's it???" After that we have used the cream for several blood draws without any problems. I put the cream on at home, cover it and by the time we get to the lab it is numb. Good luck. Kari

Hi, we live in California and as far as I know, it is at least a state law if not a federal law that a school can't force you to vacinate. If you choose not to give your child a vacination you just have to sign a form that states that you did not do it and understand that if there is an outbreak of that particular virus you "might" be notified that your child has to stay out of school for that time period. I signed the form in September. Ask the school for the form, if they tell you they don't know what you are talking about, check with your local or state government. Hope that is helpful. Good luck. Best, Kari

Hi, my twin boys were fine at their 5th year checkup. They both got the chicken pox vacinaqtion at that time. 5 weeks later one of the boys was diagnosed with PANDAS showing sudden onset of tics and severe OCD. 2 weeks after that his brother started having unbelievable raging tantrums (if you could even call them that). I am convinced that the chicken pox vacine played a role in thier PANDAS. They both tested positive for an unknown and thus untreated strep when symptoms first started. My theory is that they were geniticly pre-disposed to having an auto immune reaction to a virus./bacterial infection and the live chicken pox vacine in coordination with the strep and their genes brought it all on. They have not recieved any vacinations since then (8 months ago) and as far as I am concerned they will never get another one. Best, Kari

me too....really upsetting, I hope this poor response from people will help them get the point! Kari

Hi Doug, We live in Los Angeles. Could not find a doctor here that knew anything about PANDAS (hard to believe isn't it), so followed so many others on this fourm and had a phone consult with Dr. Kovacevic in Chicago. Our pediatrician did not know anything about PANDAS, but the key for us was that he was willing to be my "secretary" of sorts (of course I did not put it to him like that). Basicly, I did all the research, talked to many different docs indluding Dr. K, came up with a plan for recovery (I have twin 5 year olds who both have PANDAS) and continusly called or faxed him requests for perscirptions etc. I sent him updated info on PANDAS research and made him feel he was in the loop all the time (and he was). Both kids were fine on May 12th at 5:25 pm and then our nightmare started at 5:30pm...exactly! One boy had sudden tics, hyperactivity, terrible anxiety, intrusive thoughts and OCD. The other started 2 weeks later with horrible raging tantrums that happened several times a day and he also had a complete personality change. I could not understand how my children could become different people overnight...but they did. We did IVIG 5 weeks ago and while I am afraid to jinks anything, they are both doing great. PANDAS seems to be gone for now anyway. My only regret is that we waited to do the IVIG and not only suffered thru the past 7 months, but now we are in flu season and I am constantly worried they will get sick and it will all come back. I am having trouble letting them leave the house. FYI- they have both been on 600 mg of Augmentin per day since June. It helped, but not enough. At this point, not sure whether to scale that back and see what happens, or up the dose to give them even more protection during this winter. But then, you will probably find, as so many parents here have found, that in many respects you must become your childs doctor. You must become the expert. You must find the treatments and keep up on all the research. There is no easy answer or "road" to follow, you learn, evaluate, and you pick a plan. If it does not work....you try something else. You just keep digging and making decisions. Sounds like your pediatrician is supportive and might be willing to do as ours has done. Truly, his willingness to help the way he did, and contnues to do, made this so much easier than it would have been. Best Wishes and hang in there , there is light at the end of this dark tunnel. Kari (mom to Jack and Nick)

Hi, I just wanted to let you know that we did IVIG on both our twin 5 year olds 5 weeks ago. The first week my son's rages were worse than ever. I was devistated. They seemed to go on all day every day. My other son was slowly (very slowly) seeming better. On the 8th day, things changed. We have not seen any tantrums since then although there have been a few days when I could tell (and feared) they were falling backwards just a little then suddenly they were fine again. Some of that I believe is now "learned behavior" and we are trying to unravel it all. Hang in there. Apparently it is a process and not as much of a quick fix as we all hope. Or at least it is not that way for some of our kids. At this point, I am looking at weeks that are good on the whole and not counting the days too much as that was driving me nuts! Best wishes, Kari