helpmyson

CandKRich- I too am reading the same devotional!! I was having one of those days when I was thinking too far ahead. It was just what I needed to hear to just take one step at a time. Easier said then done.

We are excited to get going and have the IVIG this week with Dr. K. Trying to figuare out what we should bring to help the time past. Does anyone know if there is like a DVD player, tv, etc there? Also any suggestions as to where to stay? Someone said to take along something for possible headaches afterwards? ANy advice would be appreciated. Thanks

I have to say, have a vision check just in case, but this sounds just like OCD to me (esp the part about not stopping until you acknowledge and that there is obviously nothing to be seen)...but you didn't mention the frequency. I'm just curious. However, some kids have some vision changes with PANDAS. Some have 'flashy lights' and colorful lights and there were a few times that my daughter ran straight into playground equipment, etc when she was in exacerbation. I did have my dds vision checked during exacerbation (was NOT within normal limits) and then after IVIg (20/20 vision). It is amazing how many parts of their little lives this effects. Wishing you the best. Keep us posted on how the steroid burst goes. regards, amy s Amy- Very interesting about the vision. My son actually just got glasses recently. His vision was very bad. Also interesting you mentioned "flashy lights" because he also talks about "sparks". He literally jumps and says "Oh- did you see that spark- I hope it does not start on fire". Sometime I worry that this could just be plain old OCD but then I hear all of the similarities and I truely believe that it has to be PANDAS. Your daughter had IVIG? Did you see improvement? How long ago and how are her symptoms now? Is she on antibiotics now? Sorry so many questions. Thanks

Just curious if anyone else out there has experienced this. At first my sons constantly obsessed with fuzzies. Feels the need to tell me everytime he thinks that a fuzzy might have fallen on me, etc. Now he has added "black spots". "There is someone black on you. There is a black spot on the wall and on and on and on". He will not stop until you ackowledge that you heard him. Very tiring to listen and respond to. There is obviously nothing to be seen. I was wondering if it was just another irrational thought/confession like soooo many others that he has or if there is actually something going on with his eyes. I am sooo thankful for this forum. We are new to this. I have a difficult time dealing with this because when my son goes away from home people don't seem to notice anything (I notice hints in public) but wow when we get home the confessions, needing CONSTANT reassurence, etc start and don't stop. I can see how people would think I am nuts saying that he is not good because they do not see it. It also plays tricks with MY mind as well. Just got done with a steriod burst and uncertain what we were supposed to learn from that. It almost seemed to make things worse but I am documenting and maybe I am just not seeing the big picture yet. I get discouraged at times but then get hope by reading other peoples experiences- good and bad- but at least I know we are not alone. Thanks for listening!

Just curious here- My son had the DNASE and ASO Titers done a while back and they were negative. Dr. K wants to redo that which we are willing to do. My son is having a really difficult couple of days. Is it from past experience of everyone on this forum- that the blood work will show more during an "episode" or doesn't it matter. I am wondering if we should hurry and get this done while have an "episode" or is it ok to wait until next week. Thanks in advance.

I am here to say - I believe that you are not crazy in regards to the monthly pattern! My son had monthly fevers. I could mark it on the calendar. We had his tonsils out and his symptoms went away for a while. Now it seems that his OCD behaviors peak monthly. It is crazy. How could that be. I would love to hear someones explanation as to why that would be.

I apoligize in advance if this is a stupid question..... but what is NAET?

It does help to know that we are not alone. My son is doing "decent" right now. Not horrible but still not himself. We have a phone consult scheduled with Dr. K in Chicago next week. I am soo praying that we get some answers and hope from him. But in the meantime really appreciating the "good days" that we have. I know now how I truely took for granted having healthy kids. I hope for the best for your son as well. You are very fortunate that your doctor would put him on antibiotics. Our pediatrian would not do that. I agree - this site is wonderful. A ton of info to learn from other peoples experiences. Thanks!

Thank you to all who responded. It helps to talk to people to seem like they understand. It is so strange- these symptoms that sometimes I think that I am loosing it. This forum has been very helpful. Thank you.

So we should get a swab? I thought that the blood test were more conclusive than a swab or culture. The thing is when he had his fevers before he rarely had strep- I have to get his records for sure but maybe once or twice- so I just have my doubts that the swab or culture will come back positive. My pediatrian had said that if his blood work comes back negative then it is not "standard of care" to put him on antibiotics. He did not have any unusual behavior when he had his fevers, but saying that- he is VERY talkative, active- never diagnosed with ADHD but I guess I wouldn't be surprised. But now it is ridiculous! You can tell he is purposefully keeping himself active, talking, moving, whatever. I really want to try antibiotics. What do we have to loose. I can not even get myself to think that this will be a lifetime thing. It can not be. It just can't. Should we have a full phycological workup to see if anything else is going on do we try to find someone who thinks it could be PANDAS? I just pray that I know when to keep searching for answers and when to say this stinks but this is life.

I am new here. But I am desperate for help. My 10 year came home from school on Dec 8 a different kid. He cried for over an hour as he "confessed" numerous things. I was in shock to say the least. To make a long story short, my pediatrician told me to take him to a phychitrist. I did with doubts because I felt that that there had to be a medial link to this. Because 2 years go to the month, he had his tonsils and adnods out because of unexplained fevers which occured every month almost to the day. I realize that sounds wierd but it did happen. I took us 6 months or so to realize how exact each month his fevers were. Anyways finally got his tonsils out and the fever never came back. We were thrilled. Now this. This is horrible! He knows what he is thinking is crazy but yet it seems to real to him. I finally got his pediatrician to order blood test after reading up on PANDAS. But to my disappointment, they came back negative. So now what do I do. This is unbelievable that this could come on over night like this. Any advise would be appreciated. I am scared that every day that goes by without doing something is making this worse. Is that true? He has obsessions but no complusion- other then constant talking which may just be personality. Could this plain OCD? It is amazing how quickly lives can change. What can I do?