chrisw

Some of you have mentioned hallucinations as a symptom of Pandas. When my son was at the height of his worst exacerbation, he asked me what the blue lights were outside. He began to describe something like fireflies, but they had a blue light, were greater in number and moved faster. I have since talked to another mother whose PANDAS son described seeing almost exactly the same thing. He called them blue fairies. I am assuming that this is a symptom resulting from the brain inflammation, but I have been very curious to know if other PANDAS kids have/are seeing this as well. Please share if others have visual hallucinations. I'm wondering if this is another "hallmark" of PANDAS. My son has been on Azith. for about 2 weeks, and I asked him the other night when we were outside if he was still seeing the "blue lights". He said, "no". I took that as a good sign. Also, I was wondering how many others kids have had psoriasis? My son also developed mild psoriasis on his scalp during his worst exacerbation. It has also gone away since prophylactic abx. Just curious. Blessings, Christie

Hi All, Just wondering if anyone has any ideas concerning dosing of Azith? My Ped. prescribed for my son, but he and I were questioning dose because supposedly Azith. is 5 days of abx., but 10 days coverage. He was wondering if 5 days abx. then 5 off would be effective. He is willing to do the 250mg. daily, but I am curious what others have tried, and what has worked. Or, any other creative dosing that has worked. Any input would be greatly appreciated. My son is 9 and weighs about 70lbs. Thanks, Christie

This sounds similiar to an episode my son had in Dec. 2008. He became ill with a fever, sore throat, etc. I took him in for a throat culture, which was neg. The Dr. said it was viral. Meanwhile, my son's PANDAS symptoms were escalating. He then woke up in the night with croup. Most MD's will tell you that kids should outgrow croup by our kids ages. My son is 9. He was diagnosed with "asthma that presents as croup" when he was about 6. This croup ONLY occurs with illness. We returned to the Dr. because of the croup, and he did a chest x-ray and diagnosed a "round pneumonia". He obviously felt it was bacterial, because he prescribed Azith. That was out first experience with Azith. His response was incredible. By day 2 on the abx. he was a new boy regarding his PANDAS. I have to wonder how many times he had croup in the past, and it was really a bacterial issue. When he was younger, we often got a steriod for this issue. I remember that it did help his croup. I believe Dr. K mentions bacterial pnuemonia on his website as instigating PANDAS? Is it possible that this is bacterial pnuemonia? Might be worth another trip to the Dr. Hope things improve for you and your son. Christie

I have seen this with my son also. I think it takes the abx. time to "catch up" to the strep. Typically, my son has had 2-3 days of continued and increasing PANDAS behaviors before they begin to level off and then decrease. We are actually doing just that right now. He started Azith. on Mon. night and had pretty bad days on Tues and Weds. but it began to improve yesterday and today. I know it's hard, but try to be patient. Hopefully you will see some improvement soon. I know how you feel. Christie

Michele, Could you video your child with maybe your cell phone or something and show his teacher? Also, maybe you should make a copy of this thread and show it to her. My son also can mostly hold it together at school. The key in making these people understand that this is not a parenting issue is to explain that this is NOT normal behavior for your child, out of CHARACTER for home behavior. I believe that these kids can finally ACT on what they have had to suppress all day because they feel safe and can finally relax. When my son was at the height of PANDAS symptoms in OCT 2008, his body would go into a continuous tic in the car on the way home. He would screech at the top of his lungs and every muscle in his entire body would be writhing. I'm sure if his teachers saw that, they would be shocked because he is so different in class. All they have seen in him is the separation anxiety, mild tics, enurisis, and some focus problems. I am so sorry that his teacher has made you feel as if it is your fault. My son just went on Azith. He was on Augmentin, but I think he actually got strep on 250mg. a day ( we didn't test but he had all his classic strep symptoms, plus an increase of his PANDAS symptoms) so has had 3 doses of Azith and is already showing improvement. We are definitely considering IVIG, as my son is 9. Hang in there. My prayers are with you and all on this board. Christie

Worried Dad, VERY, VERY well said!!!!!!! So sorry about the tough week. Christie

Hi All, Our journey with PANDAS (actually knowing what was wrong) began in Sept./Oct. of 2008. My son has experienced episodes of extreme separation anxiety since he was 4.5 yrs. old. Looking back now,I know that this behavior began after a bad case of strep. He has been battling this anxiety since then, but in the fall of 2008, his symptoms really exploded into ADHD, Motor tics, verbal tics, frequent urination, loss of handwriting/math skills, more fears, etc. after a dx case of strep in Sept. At least two more bouts of strep followed. Each time he was treated with abx, the symptoms of Pandas would subside. When he was on a course of Azith. in Dec. the symptoms were gone by the 2nd day of abx. and did not return until he went back to school in Jan. I found a wonderful Ped. in Jan. who was willing to consult with Dr. Leckman and Dr. K about proph. abx and he started my son on 500mg. a day of Augmentin. I know that many of you have much experience with the abx. merry-go-round, so I thought you may be able to give some advice. My son's symptoms are about 75-% better on the Augmentin. Many of your posts say things like "this abx. was not working for us". Do you mean that it wasn't protecting from strep and they were still getting it while on the abx, or were the abx. not helping symptoms? My son is constantly complaining about his stomach hurting. He goes to the nurse all the time at school with this complaint. I think it is the augmentin. Also, he got so much more relief from the Azith. but my Ped. seems reluctant to start this process at the top of the abx. spectrum. My son has been on the Augmentin for about 3 weeks now, and I keep hoping things will improve more with symptoms and stomach (he is on a probiotic also), but do you think it is too soon to request a different one, like Keflex, or should I try to stick it out longer? We had a 3 day weekend here, and my son had to be "pried" out of the car this morning by me and 2 teachers. He is 9 yrs. old.... not an easy task. You all are SO knowledgeable so I would greatly appreciate any advice here. I went ahead and put a call in to his Dr., so waiting for a return call from him. Thanks in advance, Christie

EAMom, Evidently, there is a difference between cherries. Many of the websites and research I saw specified "tart" cherries. All cherries have some of these properties, but tart cherries are supposedly the best. They do not hold up well for shipping as fresh produce, so can be purchased (they are pricey) dried, frozen, canned, juice and in supplement form. I chose to go with juice and supplements(haven't gotten yet). Also, I do believe I saw a recipe for a smoothie on the website www.choosecherries.com. I am anxious to give this a try. I'll post when we do. Christie

I was wondering if anyone has used tart cherry supplements successfully in place of Ibuprofen or naproxen. I have used motrin for my son when his anxiety is up and it does seem to help, but I don't like giving this all the time because I know its got to be hard on his stomach and liver. I have done some research on the effects of tart cherries (grown mostly in Michigan) and I must say that I am very intrigued. Supposedly, they work like and as well as NSAIDS but without the side effects. Many people are reporting success with tart cherries for osteo and rheumatoid arthritis for pain and inflammation. They also contain natural melatonin, tons of antioxidents and have a WHOLE bunch more benefits. I have ordered some supplements to try but wondered if others had given this a try. The Univ. of Michigan has done a lot of research on this and if you Google it you will find many sites. I recommend www.choosecherries.com. I should be getting the supplements any day now and will post if I think they are working. Christie

I am very glad to hear that your son's tics are progressively getting better. My son is 9 and also began having tics with strep dx in Sept.08. We are currently awaiting proph. abx as our Ped consults with Dr. K. Enuresis is also one of my son's symptoms, and he hates it. Before we knew that it was from PANDAS, we had his sugar checked for diabetes, as that is a common symptom. Not trying to scare you, but something to consider ruling out? Also, do you think this could be "turning the pages" that I have been hearing about after IVIG, considering it is one of the symptoms of PANDAS? I really feel for him, and for you. Have most of his other symptoms also improved after IVIG? We are definitely considering doing this. I really hope things get better for your son soon with this. Christie

Hi amy s, I am new to this site and had a question for you. I saw that you have a civilian military dr. We are a military family as well, and I feel very strongly that my son may have PANDAS. I emailed Dr. K and he agreed that my son fulfilled all the criteria for PANDAS. I am going into the PED. clinic tomorrow to discuss all of this with a "seasoned' Pediatrician. I printed out much from Dr. K's website, as well as his email to me. My question is this. Did your insurance ( I am assuming that you are military) pay for the ivig treatment that your little girl went through? I am so encouraged by her success so far. My son is 9, and therefore close to the age that ivig does not work as well, so I feel like I have no time to lose. Thank you so much, Chris w