chrisw

Wolfgang, I'm really not sure if what my son did qualifies as a vocal tic. He would get stuck on a particular word and repeat it very often, many times he would say it in the middle of a sentence where it was very obviously out of context. One of his favorites was "pudding!" or "do you like pudding?". He also would just randomly scream and make many vocal sounds on a continuous basis. Many times this happend after I would pick him up from school and he would be EXTREMELY hyper with full body in motion ( almost like a full body tic). All this is gone. He did say "pudding" one time after his IVIG, but not since. I guess this may have been a turning back of the pages? He would also (pre-IVIG) ask the same question over and over again, as many have mentioned on this forum. I believe that this may be considered OCD. He never exhibited a cough or throat clearing kind of tic. He did have facial tics (mouth opening, tongue protruding, eye rolling, lip licking, constant tongue movements while eating, etc.) and compulsive hand and foot movements, as well as piano playing with fingers. All of these are gone. Are tics the only symptom that your son has? My son's most debilitating symptoms were anxiety. The other symptoms were a problem, but the anxiety ruled his life and ours. Tomorrow will be 9 wks post-IVIG. I think I am finally relaxing a little bit. It's nice. Hope this helps. You and your son are in my thoughts. Blessings, Christie

Hi Sam, That is great news also! When Jacob was getting his IVIG, Dr. k told me that he hopes one day people will not have to travel across the country to get IVIG from him. His hope was that they could get it locally and it would not be such a big deal, because in his opinion, it's not a big deal. He really cares about these kids. I saw that first hand. I hope things work out for the best for you. Will continue to pray for you. Let me know what happens. Christie

Hi Wolfgang, I am sorry that your son is suffering with PANDAS. My son will be 10 in Sept. and that is also one of the reasons we went ahead with the IVIG. I guess you probably know from being in contact with Dr. K that the IVIG is more effective on children who are pre-pubescent. This can begin as early as around age 10, so this may be a critical time for your son. The only side effects my son had were a bad headache, mild fever and loss of appetite. This occurred on the evening of the 2nd day's treatment. From what I understand, IVIG is a very safe procedure and is used for MANY different things. It is not just used for PANDAS. It is by no means an experimental procedure in itself. Yes, there are risks involved. There are risks involved with almost everything we do as humans. Eating involves risk of choking, driving risk of serious injury or death, swimming risks of drowning, etc. Yes, you must weigh the risk against the benefits. I was not willing that my son suffer with mental illness throughout his childhood and teen years, if there was something I could do that might give him a much better chance for a normal start in life. The study you are referring to has not happened yet but is in the works. I will private message you with information on a contact. If my son needs IVIG again, I will do everything in my power to make that happen. We are going on 9 wks. since IVIG, and he is doing great! The boy I have now is not the same boy pre-IVIG. He is 90-95% better than his worst exacerbation. I"ll take that happily. Even if the improvement in his core symptoms had been less, I would not be sorry. There have been other benefits that I probably have not mentioned. Before IVIG he; was always pale, had large pupils, low energy, stomachaches, headaches, joint pain, psoriasis on his scalp, molluscum on his arm, and was just sickly all the time. Now he is robust! All these issues have completely subsided. I just continue to pray for the success of this treatment in the long run. I am very glad that you have been communicating with Dr. k. There is noone who knows more about PANDAS. I wish you all the best and will keep you and your son in my prayers. Christie

Hi greeneyes, He is doing VERY WELL! We switched him to Augmentin 500mg. when he got out of school on June 4th. It was hard for me to let the Azith go, but I know it is probably for the best since he doesn't seem to need the extra immune modulation anymore. I would say that he is 90-95% better. I can't say 100% because I truthfully don't think we know what that is, since he has had PANDAS (without us realizing it) for so long. He is SO much happier and I can't tell you what that does for us. If I could offer any advice (just from my limited experience) I would suggest that before IVIG it would be good to get any exacerbation calmed down as much as possible (Azith, steriod burst) before doing IVIG. I feel that my son may have had an extra advantage because he was doing well (by no means perfect, but well for having PANDAS) at that point, maybe 70% better than his most severe exacerbation. Life is so much more enjoyable these days. I hope and pray that things go as well for you and your child. I will keep you in my prayers. Christie

Hi Bmom, I just switched my son from Azith 250mg. a day to 500mg. Augmentin on this past Thurs. Dr. K let us continue on the Azith until school got out, then he wanted us to go to Augmentin. Those 500mg. pills are HUGE! Fortunately, my son doesn't have a problem swallowing it (this seems like a small miracle of which I am extremely grateful!) and takes it at bedtime. So far, I have not noticed a difference in his behavior since the switch. He is still doing very well (post IVIG) and we are enjoying him more every day. Dr. K wrote the px for 1 time daily, every morning. Does this leave him exposed? Now I am wondering the same thing. And, since he takes it at bedtime (which is just easier for us to remember) is he more suseptible during the day? Any thoughts? Christie

I fully agree with P. mom. When we get in our cars everyday, statistically we are putting ourselves at risk. Most of us don't let that stop us from carrying on with our lives and doing the best we can. I believe that IVIG or PEX gives our children the BEST chance at a good quality of life, not to mention the entire family. Yes, you weigh the risks. For us, IVIG was the option we chose. We are 7 weeks post IVIG and doing GREAT! Would I do it again? In a heartbeat. Rock On P. Mom! Christie

Hi Jack, Have you seen the website www.webpediatrics.com? This is Dr. K's website. He is an expert in PANDAS, and will consult with other Doctors. If you email him, he WILL email you back. It is important for you to tell him if your son has had a positive strep culture WITH an exacerbation of these symptoms that you speak of. Does your son show improvement when he is on antibiotics? I knew my son had PANDAS when he improved on antibiotics. He improved the most on Azithromycin. I am so sorry that you and your family are suffering with this. I hope you can find a Doctor who will be willing to talk to Dr. K or who can help you. Let us know what happens. Blessings, Christie

Hi EAmom, I have no science to back up my very unscientific opinion, but it would seem to make sense to inhibit the inflammation as much as possible prior to the IVIG in order to give it a head start. My son was in pretty good shape when we started the IVIG because of the effects of the steriod burst. He still had symptoms of PANDAS that Dr. K could observe Pre-IVIG, but he was better than he had been in several months. If we had to do it again, I would probably do the same thing with the steriods but maybe a longer course that ended with the beginning of IVIG. When my son was on proph. Augmentin (pre-IVIG) we were taking 250mg x2 daily. My Ped. prescribed this dose and I'm not sure if Dr. K suggested this dose or if my Ped. made that decision independently. Anyway, he was constantly complaining of his stomach hurting (not sure if this was just PANDAS or the abx.causing this). My Ped. decreased the dose to 250mg. x1 daily. Three days later, my son had a sore throat, headache and stomachache. I wish I had gotten a strep test b/c I think he may have had it, which means he had a breakthrough on that dose. It was at this point that I suggested trying the Azith to my Ped and he prescribed. As you can imagine, I am somewhat nervous about going back to Augmentin. Dr. K prescribed 500mg. x1 daily, but had no problem with me continuing the Azith till school got out. If things don't go well on the Augmentin, not sure what we will do. I guess we'll cross that bridge when we come to it. Hope this is helpful. Christie

Hi Michele, Having a Pediatrician on our side has made all the difference. When I first saw him, I went in with articles also. I also had a list of phone numbers that Diana gave me with Dr. Leckman and Dr. K. I told the Ped. that there was a study forthcoming at YALE on PANDAS, and that my son was a probable candidate for it. I assured him that Dr. Leckman was pleading for Pediatrician's to call him so that he could inform them of the latest treatment protocol for PANDAS kids. I also told him that Dr. K was an expert on PANDAS, and that YALE was using his protocol to base the study on. My Ped. totally listened and called both Dr. Leckman and Dr. K. I'm not sure if it was what I said, or just that I got lucky with a wonderful Doc. Anyway, he started my son on Augmentin (proph.) but he did not improve as well as when he had been on Azith for 5 days previously. My Ped. went ahead and prescribed the Azith, which my son was still on when he had the IVIG. He is still on the Azith until school gets out, and then we will go to Augmentin 500mg. a day. My son also had a steriod burst, suggested by email from Dr. K which my Doc. then prescribed for him, the week prior to IVIG. I do think the burst helped my son with the anxiety of having IVIG, although it really isn't that big of a deal. Once they get the IV, it's just keeping them occupied. Diana was great in guiding me to get the abx. I'm not sure I would have gotten them without her. One other thing I should mention. When I told my Ped. that the Doc's at YALE were calling PANDAS a form of encephalitis that was autoimmune induced, he really began to listen and seemed to take me more seriously. I really hope that you can get a Doc on board with you. Maybe Diana could help you. Have you talked to her? I am wishing you the best. Christie

Hi Michele, We live in the Florida Panhandle (right below Alabama). We drove about 16 hrs. to Chicago with an overnight stop at my parents house in KY. We got there on a Thurs. and had a "Pre-IVIG" appt. with Dr. K in his office at 4pm. He spent about an hour with us, talking to my son and then privately to me. We then had the procedure the next morning and then again on Sat. morning. Dr. K was there the whole time. I am to email follow-ups to him at 1 week, 1 month, 3 months, 6 months and one-year post-IVIG. He asked me to be precise and address ALL of his (previously present) core symptoms. He has also promptly responded to my emails other than the up-dates. The whole IVIG experience itself was rather anti-climactic. The best part was afterwards, when we could see immediate improvement. I don't feel like we are left out on a limb because we have a Pediatrician who spoke with Dr. K pre-IVIG and is willing to be there for us if we need him ( strep tests, steriods if needed, etc.). Hope this helps. Christie

Hi All, Yesterday was 1 month since my son Jacob completed his IVIG with Dr. K. He continues to do very well. I would say that he is still 85-90% better than his pre-IVIG state. We even had strep in our house (non-PANDAS daughter) about 2 weeks ago with my son complaining of a mild sore throat, stomachache and headache. I did take him for a strep culture (came back neg.) just to make sure. Dr. K suggested that I double his dose of Azith for 10 days, just as a precaution. The only reaction I noticed was a few random tics, mild obsessing over getting a snow cone maker and a little increase in hyperactivity for about 2 days. From what I understand, the antibodies from the IVIG are mostly gone now, and his own body has taken over. He is still going in to school without problems, and I am not seeing tics. He is still a little bit hyper and impulsive, but this is really minor. I have noticed that on the days I don't give him probiotics, he is not hyper at all. Any thoughts on this? He has also brought his math grade up to an A, just since IVIG. All year he has been struggling with just getting a B and earlier in the year he got a C in Math for the first time in his life. He is able to do math in his head now, where pre-IVIG that was impossible for him. His focus is so much better. He seems so much happier now. I know that we didn't realize until now how much anxiety he was having ALL the time. He is really relaxed and this has been wonderful to watch. I don't think he has shown any turning of the pages. If so, it was very mild. We are encouraged with his progress and I am able to focus on other things besides PANDAS 24/7. It has been really nice. Christie

No offense taken, Michelle. From my understanding and because of the MANY people Diana talks to on a daily basis (I think we will owe a huge debt of gratitude to her one day) she has contact with people whose children were in the original Swedo study who did IVIG or Plasmapherisis who have had long term success. She also has never advocated for JUST IVIG but also for antibiotics. IVIG or Plasma. are the only other options when abx. no longer work. Sue Swedo told Diana that IVIG and Plasmapherisis tended to ALWAYS work but sometimes had to be repeated. Dr. Leckman of YALE told her that he has spoken with MANY Docs in Europe who are having similiar results to Dr. K's work. He has been doing IVIG for PANDAS for 10 years. His website states greater than 80% success rate after IVIG. The Dr.'s also have told Diana that there is always the option to just treat with abx. and have stated that these children have a 95% chance of being fine by puberty. They have also said the reason for the lack of medical literature on IVIG and PANDAS is due to the studies not being big enough, not to mention the expense of doing a study of this size. This is why the Yale study is imperative. If anyone is interested in the study, private message me and I will give you contact info. for Diana Pohlman. Diana has been encouraged by the Doctors to create a website with parent's stories and medical research parents have done. The Doctors will proofread it for accuracy before she puts it out. It should be done by the end of May/early June and will be called PANDASnetwork.org. In my opinion, as parents of PANDAS kids, we have alot to hope for. I believe these Doctors invovled in this study really care about our children, but this machine is just hard to get going. All the best, Christie

Claire, "Turning back of the pages" was explained to me by Dr. K as the process of the swelling in the brain going down, therefore causing movement of the Basil Ganglia (eventhough it is "good" movement) which could induce behaviors. He said this could occur within the first 6-8 weeks after IVIG. I'm not sure I am doing the explanation justice, but it made sense when Dr. K said it. He said to expect it and to not let it upset me. I'm sure it will. Michelle, Yes, I hope and believe that IVIG could be a long term cure. From Dr. K's experiences and case studies, to my conversations with Diana who has told me of others who have had long term success with IVIG, and Sue Swedo's research, I feel that the money was well spent. Medications have never had the same effect that I am seeing after IVIG. I believe the IVIG is a potential cure for my son. Why would I choose to just medicate the symptoms of a disease if I have the means to get a treatment that can greatly improve my child's quality of life and has a good chance of curing it? I do realize that it may not be a cure for everyone, and that some may need more than one treatment. I also know that there are risks involved, as with almost ANY medical procedure. We weighed the options and decided that if there was any way to make life easier for our son without loading him up on medications, we would do what we could. We felt IVIG was our best option. I believe that every parent on this forum is trying to make the best decisions possible for their children and I am not saying that medications are wrong or bad, but they are just what you called them, "temporary fixes" that treat or mask symptoms, but in the case of PANDAS, do not cure. I wish you all the best with your child. Also, my other child was diagnosed with strep on Friday. I really can't say that I have seen a change or reaction from Jacob at all. YEAH!!!!! Christie

Hi All, Just wanted to give a 2 week update. Jacob is doing very well. It is hard to put a number on improvement because he has had the anxiety for SO long (at least since he was 4), but he has not shown anything near the level he had pre-IVIG. He is so much more relaxed in the mornings, happy in the car on the way to school. I still don't think he loves school (many kids don't) but at least he is not terrified to go anymore. He has not had a problem getting out of the car since IVIG, it just seems like no big deal to him. His teacher still reports that he seems to be relaxed and happy at school, and he got an A on his math test Thurs. YEAH!! When he got in the car on Wed. he told me he had the best day ever at school. THAT has NEVER happened. He used to always tell me that he had a bad day and he wanted to be home schooled when I picked him up. Big change. I still see a little bit of hyperactivity at times, nothing that is unmanageable. I just don't see him tic anymore, although when I ask him if he still does, he will say sometimes. I just am not seeing it, which makes me wonder if he just doesn't realize that he is not doing it anymore. His urinary frequency is gone and I haven't noticed his pupils being dilated. He also goes to sleep by himself at night. I may have seen a "turning back of the pages" once, but not sure. He just had a big mood swing several days ago where he got angry about going to baseball practice. He cried and argued with me. It lasted about 30 min. and then it was done. He apologized to me later. I'm really not sure if it was or wasn't turning back pages. Anyway, I would say that he is at least 85-90% better, maybe more. I feel so relieved but still cautious. I really have hope that my son will recover from this. Blessings, Christie

Hi Shaesmom, I would STRONGLY urge you to email Dr. K in Chicago. Eamom referred to him and his website in her post. Make sure that you look at the PANDAS case studies page. Your original post is perfect to include in an email to him. He will most likely give you an opinion as to if he thinks your child has PANDAS or not. He is an expert in PANDAS and my son just had IVIG from him a little over a week ago. So far it has been extremely effective. Your daughter's symptoms are VERY suspect for PANDAS. My son's symptoms practically mirror your daughter's. It is EXTREMELY important for your daughter to be on antibiotics prophylactically. The only antibiotic that seemed to help my son with the fatigue, pale appearance, lethargy, etc. was Azithromycin. I am SO SORRY you and dd are going through this. Also, may want to get the whole family cultured for strep carriers. Christie

Hi Bronxmom, We paid out of our pocket, but we were fortunate to recently receive some money (not enough to cover it completely) from a settlement where I was hit by a drunk driver 2 years ago. I do think we would have used a credit card if we had to though. My husband is military, so we have the military insurance. I tried to get the Pediatric clinic on our AF base to help us, but they just kept telling me to take him to a Psychiatrist. Anyway, Dr. K's office and the surgical center where the procedure was done will submit to my insurance company, but they have already said that since he is not an "approved" provider, they will not cover it. We'll see, but I'm not holding my breath. I had a phone consult with Dr. K several weeks ago, and then when we arrived in Chicago we had a pre-IVIG appt. in his office that lasted about an hour. The next morning we began IVIG. He was very thorough in the phone consult, which lasted about an hour, and then explained alot of stuff in the appt. Dr. K's fee was $2,400. That is reasonable because he has to be there the whole time the IVIG is happening. I'm not sure of the breakdown of the other part except I'm pretty sure his medication was around $6000 (based on his weight) and I paid $8,100 total. So, all in all (not counting travel,etc.) it was $10,500. I am so sorry that you are having so many problems getting help. Is your child on abx.?

Hi All! Another GREAT morning!!!! I feel like this must be a dream. Bmom- Jacob weighs about 70lbs. When he began prophylactic abx. (pre-IVIG) he was put on Augmentin 500mg. After 3 weeks we went down to 250mg. a day. Within a few days, he was presenting with sore throat, stomachache and headache. Plus, his PANDAS symptoms were picking up. At that time, his Ped. went ahead and put him on Azith. Truthfully, I haven't started him on the Augmentin yet bc I haven't filled the prescription. He is still taking his Azith. I wish he could stay on that until school gets out. Kim-Thank you for your kind words. I am so excited about this transformation but at the same time I am accutely aware of the pain that PANDAS is causing our sweet children and I almost feel as if my words could be torturing to some. Please forgive my gushing. Greeneyes- Dr. K is a trip. He REALLY does care about these kids. Thank goodness for him. Again, I don't regret IVIG for one moment. I didn't want my son to suffer with this into adolescense. He will be 10 in Sept. and I just couldn't bare the thought of another miserable school year. I hope your son will be able to get the IVIG in June and does well. To me, almost ANY improvement would have been worth it. Christie

Update! Jacob's teacher called me this afternoon to let me know how amazed she was to see him so changed in such a short time. She couldn't believe it! She told me that it was like whatever was making him afraid all the time was just gone. She said that he seemed completely relaxed and just happy to be there. He also only went to the bathroom twice today rather than the 5-8 times that was the norm. I still have not seen him tic again. I just put him to bed and only had to lay with him for about 5 min. and then he was ok with me leaving. I am loving life right now. Hope we can just keep him well. Dr. K has put him on 500mg. a day Augmentin for a year. I wonder how hard it will be to give up THAT security blanket when the time comes! Christie

Hi All! My 9yr. old son got IVIG with Dr. K in Chicago this past Fri. and Sat. We drove from Florida, so just got back last night. We arrived in Chicago on Thurs. for a pre-IVIG appt. with Dr. K that was extremely reassuring to me. I felt that we were doing the right thing, but after talking to Dr. K for about an hour, our decision was affirmed. Since my son had done a steriod burst the week prior, the affects were still with him and he tolerated the procedure (without to much anxiety) pretty well. I was able to see a difference in him after the first infusion. He was much more engaged in conversation and much calmer. Sat. night, he got a bad headache and ran fever. Dr. K said that this is common so we were prepared. He didn't feel well Sunday (dull headache and no appetite) but as the day went on, he seemed to feel alot better. We drove from Chicago to my parents house in Ky. to spend the night. My parents could NOT get over the difference in Jacob. He seemed to mature overnight. He was carrying on full conversation with my parents, LEADING conversation, making us laugh, responding to affection and giving it back in a NATURAL way, and hearing me and doing things I asked him to do the FIRST time! My parents live in a big, old house(built in 1880's) and Jacob went upstairs all by himself to get on the computer. It was evening, and when I went up to check on him, he was sitting in the pitch dark playing the computer. I asked him if he wanted me to turn a light on for him, and he told me that he was ok and I didn't need to. WHAT???? First of all, he would never go upstairs by himself, much less in the dark with no lights. And secondly, he responded to my question, even while playing a game on the computer, the first time I asked it!!!! I have not seen any tics since Sunday afternoon. They just gradually went away beginning on Fri. He and I travelled from KY to FL which took us about 8 hrs. We only stopped 3 times for him to go potty. That's a record! My husband and daughter noticed how different he was last night also. The true test came this morning. His worst symptom has been his separation anxiety. He was so relaxed and happy this morning before school. When we got in the car line, he got right out of the car when they opened the door (has had to be physically removed from car many times in the past) and walked toward the school. He looked back at me and gave me the most beautiful smile I have ever seen! That was the FIRST time that has EVER happened with him going to school. In the past, if he looks at me, he has a look of sheer terror on his face. Needless to say, I cried tears of joy the whole way home. I have much hope for the future. I am trying to prepare myself for "turning of the pages" episodes, but I have seen my son again and I know that we are on the way to recovery. I do not have a minute of regret about doing the IVIG. We may still have bumps in the road, but I am very optimistic. For us, it was the only option. I would be happy to speak with anyone about our experience. Private message me and I will email or call you. I will also post updates. My prayers are with all of you. Christie

Dcmom, I would get your daughter cultured (not rapid test) again. My son always had a stomach ache as one of his only symptoms of strep. It is possible that the amox. failed, especially because she had to stop it early. My son came down with flesh colored bumps on his arm that lasted about 6 mo. and went away after we started proph. abx. Before PANDAS dx., the Dr. called it molluscum contagiosum. When I looked it up, I found out that it is common in people with weak immune systems. They itch and spread. We got a strong cortisone cream and used it every night. That helped, but I think the Azith. may have helped the most. He also had some eczema around the same area (he is 9 and never had eczema before) which has also mostly cleared up. I hope things get better for you soon! Christie

Thanks for the replies. I guess it is different with every child. I haven't put this out there yet, but we are scheduled for IVIG with Dr. K for next week. He will have his infusions on the 17th and 18th. My son is 9 and will be 10 in Sept. and we just didn't want to wait any longer. His most debilitating symptom is separation anxiety and fears in general, although he has MANY of the other PANDAS symptoms, they are on a more moderate level. I am very hopeful and trusting God for a good outcome. I will definitely post of our experiences in Chicago. Christie

My son began a steroid burst on Mon. night to continue thru tomorrow morning. The last 3 days have progressively gotten better. I actually had some really good extended conversations with him where he maintained his train of thought throughout. How refreshing! He is more focused, more like himself, less hyper, less tics, less urinary frequency, and less anxiety. He brought home 3 tests today that he took this week....all A's. Those of you whose kiddos have done this, how long did this last for you? It has been so nice. Have any experienced long term results (symptoms alleviated) from the steroids? Thanks, Christie

Indigo, I know that some parents have mentioned singulair on this forum and I hesitate to even bring this up because I think we all have enough to worry about, but I encourage PANDAS parents to be very careful about using singulair. My 9 yr. old son began taking singulair and zyrtec when he was about 4 for "asthma that presents as croup, ONLY with illness" and seasonal allergies. When he had his major explosion of symptoms in the fall of 2008 and before we finally figured out PANDAS (pos. strep with first appearance of tics plus other new symptoms) we took him off all allergy meds because of some research I had done on these meds. When we took him off both of these meds., I immediately noticed that he was much more even tempered. He had always been moody with many bouts of sadness and crying that would come out of nowhere. The other PANDAS symptoms stayed, but he has NEVER been moody (unexplained sadness, crying) since. This was before proph. abx. I really do feel that the allergy meds. were affecting his mood. Even with his anxiety, he is not SAD like he was before. I suggest if your PANDAS child is on singulair or zyrtec, you may want to look at side effects. It is amazing how these side effects mirror PANDAS symptoms (anxiety,depression,anger, aggression, etc. etc.). A good website to look at is www.parentsforsafety.org and www.patientsville.com. I hate to add any fuel to anyone's fire (thanks PANDAS) but I DO feel that it is good info. for those of us with these unique kids. Strangely, my son has hardly struggled with his allergies at all, even through the Spring weather here in Florida since he began taking abx. If he starts sneezing, we make him use a sinus rinse by Nelimed that we bought at Walmart for about $10. It is a squeeze bottle that you fill with warm water and a powder that comes with the kit. It is supposed to wash away pollens, viruses and bacteria that hang out in the sinus cavities. It does seem to work, at least for allergies. Anyway, just wanted to share that. Christie

Peglem, I think your post was SO completely right on! I also feel that this teacher has a LOT of nerve. She is OUT of her area of expertise. I am also so sorry for all you are dealing with Michele. Pandas is difficult enough without having to put up with people who THINK that they are more knowlegeable about your child than you are. Have you been able to secure a prescription for Azith. yet? That really helped my son, although he is not 100%. Not unusual, I know. Hang in there. Blessings, Christie

My son also said that when the lights were out in his room, everything that was white in color looked like it was glowing green. HMMM....strange. He also described everything looking like a fuzzy TV screen when the lights were out. Visual Snow? He is 9 and is able to describe these things to me. I tried not to make a big deal about it bc I didn't want to make it an attention getting issue, even though he is not really an attention seeking kid. When he first asked me about the blue lights, he did it as if he thought everyone saw them. Strange. Christie