LindaMW

Vicki, No anti-inflammatories. Right now he is getting nothing. I went to GNC and found an herbal spray that is supposed to help with anxiety and was trying that. Right, at least we saw something w/Abx and hopefully in the future we can try again or explain that to a different doctor. Jag10, I tried searching PMom but did not find anything matches. Thanks, Linda

So we finally found a doctor that heard of PANDAS and was willing to try antibiotic. Great right? Around 12th day on Keflex started seeing a big change in our son. Went back to school after being off 2 months and did not seem as anxious or have any rages for 2 weeks. Even the therapist at the OCD clinic we take him too saw an improvement. They even commented that it must be the antibiotics. OCD still there, but the others changes were great improvement. So we go back to this pedi after three weeks and tell him the changes and he said it was the placebo effect. Like my 9 year old is playing games with us after 5 months of this and waits until the 12th day in and decides to change. My husband and I could not beleive this. We finally found a doctor willing to see this and that was how it was left. Now what do we do? He still seems okay but not as relaxed as he was on the antibiotics. I guess as long as he is not raging and goes to school and seems okay we let it go. The problem is if he gets sick again and this all flares up again, what do we do? I do not want to go back to this pedi, I don't feel confident in him now. I feel like we are all living in the Twilight Zone. Does anybody know of doctor willing to admit there is PANDAS in the Pittsburgh area? This city is supposed to be one of the best for it's medical facilities, but I am not experiencing that now. Thanks, Linda

Wow, he said it exactly how it is. I really wish our pedi would listen to this, he is a "I don't beleive that exists" kind of person. I am printing out his article, the other link you posted. Why can't these doctors believe that this is happening? I just wish he had some more ideas of what can be done. He didn't seem to be too optimistic about the popular forms of treatment. But what else can we do? I agree they do need to get to the real cause and not just treat a few symptoms. This is the argument we are having with the psycharist that runs the OCD clinic we are in. She wants our son on Prozac and we told her we tried it and it was an ugly experience. He became hyper and had hallucinations. Her reasoning was he was not on a high enough dosage. I really hope they can find something out soon. Maybe this conference they are having in May will shed some light on things. Thanks for this info Sweet Cheeks Mom. Linda

He has fought me with doing the school work. We would do a little at a time and he would have to rest or sleep. His concentration was horrible. Then last week he worked with the tutor and did fine and the next day he went back to school. I don't understand. Is this the antibiotics really working? I am afraid to think it is because I don't want to be let down. We have been living with this for five months now, but the school refusal and rages have been since the end of January. Have you seen any problems with his writing? I am now keeping track once a week. I have him write some stuff and comparing it to the last couple of months. His writing looked like a preschooler, not a third grader. Thanks Good luck to you also. Linda

I have been wondering the same thing for my son also. He has been on Keflex since March 15th, 2012 and just last week we saw that the rages and anxiety have come way down. He has not been in school for the last two months and decided last week he wanted to go back. Today is his thrid day back and he said it has been fine. The OCD syptoms are still been there. We see the pedi that has him on the Keflex this Thursday. I was wondering if he will continue him on it or what. I still want him checked for Lyme. We found a tick on him the end of last year, so it is not unlikely. Does this confirm that he has PANDAS/PANS or what? And if the antibiotics are helping what have they done for everyone else. Like Ngold24 said, that after so many days the symptoms came back. Ngold24, how long was your son on antibiotics before you saw a change? Thanks, Linda

I read some of the website. I just said to my husband it might be worth trying the supplement Thim-J. I did a little research on it and it seems all natural. I am just afraid to try it on my son. If you hear anymore about it, please keep posting. Linda

I contacted Dr. James Leckman, got the name from someone else on this forum, and he emailed me a form to rate the severity of symptoms and who to send it too. I am going to review it with my husband and go from there. I think the study is done in Maryland and we are in Pennsylvania, so if we qualify, it would not be too far. It is just so hard to get others to understand all this. The psycharist said to pursue these other avenuse, but you can tell she doesn't agree. But at the same time she wants us to jump into putting him on Prozac. Wouldn't it make sense to rule out any other medical/bacterial/immume problem first? If we just jump into psychotic drugs then we may never know what the underlying cause was. I'm not saying we may not have to go that route, but rule out everything else first. Same with school, just make him come in. Then when he does he screams and cries and disrupts everyone. We have already done this. But I guess school has to say that. It's not that I don't want him back to school, believe me I have tried, but he is not rational when we go through all of it. Plus I am afraid if he misses too much he will not be able to move on to next grade. Thanks again for everyones help. Linda

I have been reading all the other posts and have come across a few that talk about problems with math. Does anyone else have trouble with their child not wanting to go to school too? My son has missed the last two months because he gets so anxious that it turns into a panic attack. Just yesterday we talked about it again and he was full blown hyperventilating. Also when I help him with his math he cannot concentrate and says he just doesn't "get it." Now I know a few months ago, before all this he got it and was making A's in math. Tomorrow we start with a tutor because ou school said we have to in order for him to pass. My other frustration is school keeps pressuring me to get him to come back. Now there are other kids in our school out due to concussions, are they pressuring them to get their kids back? I feel like they just do not understand. Oh it's anxiety you just need to make him go. Unbelievable! We see the pedi that has him on antibiotics next week, but I have not seen any change since he's been on them. I know someone sent me info about the NIH study but I was going to see what other ideas the pedi had first. Plus he has never been tested for Lyme or vitamin def. Also he got the Flumist back in August and I want to see if that could have been an issue too. I just feel like we have been getting no where and with the school presure on top of his symptoms, I feel like I am going insane. Thanks, Linda P.S. Does anyone know off hand if there is anyone in the Pittsburgh area. The doctor we are seeing we found his name on the Pandas Network site, but he doesn't know how his name got there.

Thanks for your replay. My most frustrating thing with all this is the doctors do not look at the whole picture. I told them he suddenly changed, and suddenly had OCD and now the rages, anxiety (full blown), even handwriting and sleeping problems. They hear rages, it's a behavorial problem, be more strict. They hear OCD, put him on Prozac and get therapy. They did not once comment on any thing regarding the change in writing or sleep issues, let alone that this all started suddenly, overnight. We have a had a full medical workup done at our children's hospital and we come out of it with a severe anxiety diagonsis. AAAGGGHHH!!! the frustration level is so high, I feel like I have a psychological problem. Sorry, but this is making me nuts. I am sure anyone reading this can also relate. I have read other post and I see some of you have more than one kid with this, it is just so heartbreaking. All the advances in the medical world and they cannot handle streph. I will keep all of you other parents in my prayers and I greatly appreciate all the advice I have been given. I guess we just have to keep trying and never give up our search to help our children. Linda

Thank you everyone for all your help and advice. I will review all this with my husband. We both having been reading various articles and information on the PANDAS Network and Inter. OCD websites. I will also continue reading this forum because it has been very helpful and supportive. Linda

My son is 9 year old. I don't know anything about the study. What is that about? It has been hard enough just to get a doctor to look at the idea of PANDAS. That's why we are trying the antibiotics. I just didn't know if it was too late to try that since the infection and symptoms started 5 months ago. I just want him back in school and be able to function normally again. My child was completely fine 5 months ago and changed overnight. It is that whole concept that is so hard to understand. Linda

Also wanted to add that when he has these rages, there is no rationalizing with him. It's like his brain completely shuts down and he cannot understand what is happening. Does anyone know if there is a time window on being able to treat this? These syptoms started back in Oct. 2011 after an infection and since then he has not had any other infections. Would the antibiotics really be able to do anything at this point, or is it too late? Thanks, Linda

Hi I am new and my son has not been offically diagnosed with PANDAS/PANS but he displays all the syptoms and I finally found a doctor who was willing to try the antibiotics. I have read so many stories from other parents and I can relate completely. If this is not PANDAS then what is it? It does not make sense. Right now our biggest challange is the rages and not wanting to go to school. How are we supposed to handle this rage and anger when he physically fights with us? We need to get him to his therapy for the OCD and everyday he fights us. This is one reason he is also not in school, that and the anxiety. Why is this so hard for doctors to listen and look at all the symptoms instead of trying to diagnose a behavior problem or just an OCD problem. All of it combined says there is something else. My son was never like this before and never had OCD or dibilating anxiety, look at the whole picture. The doctors have been just as frustrating as what we are going through with our son. Any advice would be greatly appreciated. Linda