Joyfulgreetings

Thanks May!!!

Oh I didn't think about the "one thing at a time" part. That's very wise. Thank you. I always do a lower dose of Advil and have him take it more often. Also, I forgot to mention Dr Rao put him on a probiotic. Problem is he hates it. Do you know of one that doesn't use strep culture in it that is good tasting?

Well interestingly enough he had been on antibiotics for a sinus infection in January and he had been doing so much better (behavior wise) since then. He did have a few bad days when we got on the abx from Dr Rao. We have been on the 2 weeks. I was just noticing on Monday how calm he seemed. It was exciting! Then he came down w a cold yesterday and all ###### broke loose. Yesterday was raging that I haven't seen in months. But I started giving him Advil every 4 hours and it really seemed to help. I also started him on adult dosages of fish oil and magnesium. I'm also trying to find some good tasting or easy to hide the taste turmeric. He already seems a bit better. Thank goodness!

I know this is really old but I wanted to let the people who replied know what has happened. After doing a ton of research I realized my son had a lot of OCD and tics and I just didn't know it because they weren't classic at all. After doing research on tics and OCD I learned a lot! 1)He touches everything. I just thought it was little-boy-active, but apparently its not the case. 2) He holds his breath all the time while sitting still (watching TV, reading, coloring...). I have noticed it forever and even his preschool teacher mentioned it to me. I told his doctor and she said it was just a weird habit and he would out grow it. Apparently that's considered a vocal tic 3) Always has to look at the clock. He would wake up at all hours to go see what time it was. Even if he knew he would get in huge trouble, he was compelled to go look at that clock. I thought it was stubborn control issues. 4) He has to know the temperature before he will get dressed in the mornings. 5) He is afraid to sleep while the sun is up - even a little. He won't tell me why. We saw Dr Rao in TX and told him all of these things. Later that day he also told me that sometimes when he says a word that word will get stuck in his head and he will repeat it inside his head all day long. I had no idea... He is being treated with abx now we are waiting on lab results. Thanks for all of your help. I feel like I should have earned a degree since I first learned of this in November. I have done so much research! I'm sure all of you feel the same. I just can't begin to tell you how greatful I am that you answered my questions and didn't make me feel crazy.

We went to Dr Rao just 2.5 weeks ago. He. Was. Wonderful. He took a lot of time and asked a million questions. He also tested him for a ton of things not just strep titers. Based on history and symptoms he went ahead and started him on 60 days of antibiotics. He also mentioned IVIG. He does it there in the office and apparently he files all the insurance. He is obviously holding off on IVIG until we see how the abx are working and get the bloodwork back. It was so good not to be blown off as DS7's pediatrician did. He really took his time with us and was very careful. He even nicely asked DS to step outside the the waiting room (which is awesome btw! A rock climbing wall and a giant swing as well as a huge fish tank!) when he saw that he was getting anxious about a lot of the questions and answers. The staff was great too. The nurse was patient with us and the phlebotomist was very gentle and kind. I would recommend him. He is listed on the Saving Sammy website as well as the Pandas network site. Good luck and feel free to ask any more questions!

Dr Roa recommended Activated charcoal to help with herxing so I read up on it. It is great at binding to toxins and taking them out of the body. Maybe read up on that? I am angry that I gave my poor son vaccines following Drs advice. I thought I was doing the right thing. We all did.

Thanks, both of you! I'm going to give it a shot.

Tumeric is supposed to be good for inflammation. Can anyone tell me if they have used it and had success with their PANDAS kids? I know Advil is advised but I was wondering if there was a more natural route or just adding tumeric in addition to help. Especially during a flare...

DS7 had a t&a in June due to enlarged adenoids causing sleep apnea. I had no idea he had pandas at the time. The first week after the t&a was AWFUL. Apparently taking out the tonsils realeases a LOT of strep into the body. It was the worst tantrums I had ever seen, but within a week he wonderful! He was sleeping though the night. He was happy! He was CALM! I thought it was because he was finally sleeping! Well the symptoms came back about a month later. But never got as bad. And that was before I knew about PANDAS. I would do it again in a heartbeat. I would just prepare myself for that first week. Woooh! It's a doozy...

Hi, thanks for your reply. We are seeing Dr Rao in Plano, Tx. He was recommended on Pandasnetwork.org. He did do all ton of labs but I don't know which ones yet. We will get the results back in a week. However, he said based on his history he wanted to go ahead and start treating him. DS7 had his tonsils and adenoids removed this past summer. They were very enlarged and covering half his airway causing sleep apnea. Now I know they were probably enlarged from the pandas. He went NUTS the first week after the T&A but then he was my sweet boy that I remember from when he was 2. Then school started and about 2 weeks in, the monster came back. I was at wits end and started googling when I ran accross a post on this forum and thought it sounded just like DS7. I was shocked. It was classic PANDAS. He is on Augmentin 600 twice a day. He's doing crazy things at school like pouring milk on his best friend's head, arguing with teachers, crying some, fighting with friends... When I picked him up from school yesterday he was bawling because he was so mad at himself for getting a note in his binder. He gets notes regularly but he had gone 2 weeks without getting one and he was so proud. It was hard to see that. But the craziness of yesterday was something his teacher said she hadn't seen in several weeks. Dr Rao said to expect herxing for a few days up to 2 weeks. DS has only been on abx for 3 days so we will see. He said we could cut the dose if it gets too bad but I really would like to just get through it as fast as possible, ya know? I hope I answered all your questions. This is a lot to understand but I'm trying to do my research and learn as much as I can. Thanks!!!

Hi all. I was wondering if anyone has found anything to help with herxing from antibiotics. DS was just put on a very high dose. First time. I believe he has had PANDAS since he was 3 but I just recently stumbled on to PANDAS and Dr Rao in Plano Texas is treating him. He isn't acting horrible at home but at school he is falling apart. I will take him out if I have to but he absolutely LOVES school. I hate to take it away. Any supplements or anything to help? Thanks in Advance.

Well the weird thing is his art is very good, much better than most boys his age, but his handwriting is getting worse instead of better since last year. A LOT worse.

Everyone: thanks for your response, I will definitely take him in. It's hard not to think that maybe I'm just crazy and grasping for straws!!! I thought getting his tonsils out would help because of sleep apnea - it helped some, but there are still so much anger and impulse control issues.

His handwriting has gotten much worse, but he is throwing a football better than ever.

Thanks for your input! I haven't noticed any of those things with my son. I do know he is obsessed with time. So much so that we had to take out all the clocks in the house because he would wake up at all hours to see what time it was. But that is the only thing he seems obsessive about. He is actually very sloppy and it's a crises when I ask him to wash his hands. But I will check that book out. Thanks again!