PhillyPA

This is timely. I was recently on this forum bragging about how wonderful azith is. And it does seem to do wonders. I have seen lots of improvements. Last night he even answered the phone. However, after being on azith for three weeks, he got so aggressive and agitated. He was biting and kicking. It was with great conflict that I took him off the azith. I have no idea if I made the right decision because I could see the improvements his brain was making. However, the anxiety and aggression were making him suffer. I read on the label of azith that the side effects could be aggression and anxiety. I put him back on augmentin yesterday.

My son has been on augmentin for 10 months. He just switched to azith three weeks ago. Just you wait! Wow! Azith is awesome. Just awesome. Keep a journal and track what you are seeing. You will see some things pop up that are old but it is mixed in with some amazing improvements. It is almost like after my son had ivig where we saw a turning back of the pages. I can't wait to see where this drug takes us. And yes, sleeping well was the first glimpse of good things to come. One could theorize that the three ivig's he had this summer are really kicking in but I think it is to much of a coincidence that amazing improvements started after the azith. Remember, it is mixed in with some crazy stuff but the crazy stuff last about 10-30 minutes and then it is back to the good stuff. Wait until around day 14. You will be in for a surprise.

I find it hard to believe that Dr. L would let a white paper come out that does not recommend antibiotics for a long time. She has a lot of influence and pull. I know that she is involved in it. I would also consider the white paper a work in progress. It may not be perfect but it is a start. I am sure that it will evolve. Once the white paper is printed I believe there will be many more publications to follow. The doors will be open. Pandas will not be taboo anymore. It will be a hot topic for discussion and research. This is all a very good thing. Whatever the paper says, it will be a really good start.

How old is your child? My son did jumping too. However the jumping was not a tic, it was a compulsion. An OCD type of behavior. He has tics too. Yes, symptoms can show up months later. My son's symptoms started about three months after strep exposure. It was dramatic and an overnight change.

My son's first pandas episode was at age 5. During it he complained of his feet and knees hurting him. The tv and the computer screen can trigger thing in the brain. I know they can trigger seizures. My son avoided the tv and computer. He refused to look at them and actually left the room when they were on.

It is an old behavior that has come back in full force. Kayanne, I was going to call you yesterday and I got distracted. I will touch base soon. Just got an e-mail from Kathy Alverez at Cunningham's lab. She has my son's results(2nd test after three ivig's) and she sent them to Latimer but she forgot to tell me what the results are!

Yes my son has OCD. The strange thing about his crying sessions is after they are over, and he is calm, he then usually does something remarkable. The other day he was sobbing for 10 minutes on my chest. Then, he stopped and used a bathroom he hasn't used/avoided for 2 years. My son has been on azith for almost three weeks. We have seen some great changes with this new medication. Before the azith he was on augmentin for 10 months. These crying spells seem to have really picked up since we stopped the augmentin. However, the other stuff we are noticing on the azith is so good. Perhaps it is just an adjustment to the new medication???

My DS8 will burst into tears for no reason. He will sob and sob for maybe 10 minutes and then stop and be perfectly fine. Does anyone else's child do this? What is this and why is it happening? Is there a medical reason for it?

Your daughter saw Dr. T, right? What did Dr. T think about her symptoms?

My son's first pandas episode was at age 5. He had a whole bunch of tests done. The only thing that showed up was on the MRI. It showed a sinus infection. A complete blockage of all sinuses. Yes, that sinus infection is a big deal. The sinus infection was probably strep. Strep hides in the sinuses.

I love this post! It is so good to know that there are others out there like me! Shout does a pretty good job with the mustard on clothes maybe it would work on other things. I get a spray on carpet cleaner for other stains. Works very well. The only thing it doesn't get up is silly putty. And if your carpet is dark, just step on the stains and rub them in with your foot. They will blend... I've had those days Stephanie. Hang in there.

Me too! PM me too! This is great news!

Doxy is brutal. I was on it for two months last year for an eye infection. That stuff ripped apart my body inside. So harsh. On the positive side, my eye infection cleared up and my skin looked great! I've kept some and whenever I find myself breaking out, I pop a doxy for a week or two. It still is so brutal. Even after I go off of it it takes my body a full month to get back on track.

My son has never tested positive for strep with a throat culture in his life. His doctor said not to bother getting his tonsils removed because it is obvious he doesn't get strep there. It is in his sinuses.

I honestly don't understand the 5 day burst. That seems pointless. For us, a month long steroid taper in my older son, who was 7 at the time, did wonderful things. The first few days were rough and then it was great. My second son got pandas at age 6, we caught it right away and he was put on a month long steroid taper and antibiotics. He was "cured" after three weeks. I feel the steroids had a lot to do with it. All that being said, both my boys responded positively to antibiotics. Augmentin.

What did Dr. Latimer tell you to do for you DS age 10? Did she give him antibiotics? Do you have a follow up appointment? Steroids? Be patient with Dr. Latimer. She will help you. She may be having a hard time right now with the holidays coming up. Keep e-mailing her. Let her know how desperate you are. I felt the same with you did. My 8 year old has pandas and I thought "No way will my other son get this." He did. My 6 year old started to spit out all of his food, developed OCD all overnight. The good thing was we knew what is was. We already knew the enemy we were fighting and caught it quickly. If your other boys get pandas - you will know. Fight it quickly with antibiotics and a month long tapered steroid. He is 110% now. My other one had it longer and we are still fighting it but hopeful.

Keep in mind that those body jerks and tics can get much much worse after IVIG. Be patient. They WILL go away. Took about 8 weeks.

You need a weekend away from it all. Can you get a babysitter for a night or weekend? Maybe grandparents? Grab your husband, get away together and recharge. It does wonders.

I have read many books about this amazing Saint. I often refer to my son as a Saint since he has suffered so much. When he got his first communion, my son who barely spoke, got down on his knees and said, "Please let me be healthy." It sent a chill up my spine.

Kimballot is right. Everyone is different. My son had a horrible horrible reaction to Zyrtec. I give him zero allergy medicines because I don't trust any of them. I'm terrified he will react the same way. Luckily, he is not a kid who gets allergies often.

what was the dosage of the ivig?

Judith I have been there. It gets worse before it gets better. For us things calmed down around week 8.

Antibiotics completely resolved my son's spitting problem. It was one of the first symptoms to go.

Don't waste time with just any neurologist. I can't tell you how many we have seen who had no clue. Take your child to a pandas specialist. I recommend Dr. Beth Latimer in Besthesda, Md. She is a neurologist. Her office phone number is 301-530-9200.

YES, auditory hallucinations are part of PANDAS. During my son's first and worst episode of PANDAS he heard voices. He said, "Mommy, there is a guy in my ear." He also had visual hallucinations. They both went away after two weeks. He has never had them again. He was five years old at the time.