Tamistwins

I saw Dr. B's cd when we had ivig treatment. Louise was playing it, not half bad lol, he did it as a charity all sale proceeds go to a childrens charity!

Thank you Pricilla for your kind words. I am very happy to hear your daughter is doing much better. Things are so unbearable. Every day it is just screaming and battling. I seriously do not know how much more I can take. I took him for blood work today still waiting on igenex script.i hope we find a solution soon! thanks again!

Plasmid, this I did not know.. But he was really bad before we started Cipro, I don't think it is making him worse...i just don't know anymore.... Things seem so helpless.

Thank you for your recommendations. Dr. B sending out script for igenex testings. Presently my son is taking 2 antibiotics, zithro and cipro.

Hi again, We tried luvox for 3 days and then stopped. His pupils were so dilated and he kept walking around at night complaining not feeling well. We are now giving him 2 antibiotics cipro and zithromax. He slept all night for several nights but tonight he keeps waking up complaining and keeps leaking through. His ocd is bad, he bangs his head on wall and knocks his teeth. Its awful to watch. He is awful eater, never eats what family eats, picky and particular, would never follow special diet. I'm waiting for light in end of the tunnel. Thanks for checking in!

Hi I'm from nj, email me!

So happy for you and your boys I hope the ivig works for them!

Wendy, Please explain to me how you would think I could have given this to him in pregnancy if I am not ill. I don't have any symptoms and no ocd. With pandas it is common for more than one child to have symptoms, I am still waiting on Cunningham results for my youngest one.

[thank you, wow I just called the dr. office, no one to speak to but the initial fee is close to 1,000.00 , and I am not sure he has lyme. Are you familiar with the tests that he runs can I have my son tested for them first before seeing doctor?quote name=KeithandElizabeth' timestamp='1290008256' post='92806] I am not as familiar with NJ LLMD's, but I just wanted to encourage you go to a LLMD for the strep and mycoplasma and mono issues because they continually work with all of the microbes. Even if your child does not have lyme disease, bartonella may be an issue and a good LLMD can rule these coinfections out and then help your family with the infections that are causing problems. I know that Dr. Horowitz is in New York and then there is Dr. Jemsek on the East Coast. Elizabeth

Hi SF Mom, thank you for your response...as of now he is on antibiotics and we just started taking luvox for his awful ocd...he is just getting worse, complains every night he dosen't feel well and no he does not sleep well. He used to be a great sleeper but now he waked me up 3-4 times a night. No detox or any anti virals either. Any help would be greatly appreciated. Thank you!

Hi, My son has been diagnosed with PANDAS or I should say PITANDS because he has had recurring strep, mono and chronic mycoplasma. He isn't getting any better, rather he seems to be getting worse. Many people seem to think we should see an LLMD to rule lyme out. Can anyone recommend a good doctor in northern NJ area? What is the first step, what tests should I be looking to have him take? Thank you!

That does seem high maybe was a mistake, you should call and verify with doctors office. My daughter is 40 pounds she would only take a tsp 2x a day.

He is on 3 weeks of steroids now, no improvement. I just didn't get positive for lyme and antibiotics he's been on fight lyme too.

I don't actually know anymore what actually helped. He was on clonodine when he banged his head last year and then was weened off. You can rsad my other response I listed different antibiotics he took. He was never completely helped but now that head banging and ocd is worse I see how much better he was. I'm sorry for your difficult time as well, praying for all of us.

Thank you, we did western blot but will do another testing end of November. This really is heartbreaking and difficult to hear other people going through it as well. I pray to have a positive post.

We think we are still fighting mycoplasma, strep has been under control because he has been on antibiotic for a very long time. We tried biaxin, augmentin , omnicef, zithromax, right now we switched from zithro to cipro. I don't know what else to do. Just started ocd meds

Thank you Peggy, what a horrible night I had, he kept waking up complaining not feeling well. He walks so loud and then in bathroom hearing boom boom boom , his head, this is a nightmare!

considered the high dose ivig i had asked about it but can't recall the numbers right now with everything else on my head.

Hi tascha, I don't have much to offer as I am also struggling to find what best works for my children. But, I did want to acknowledge your post and am so sorry for what you are going through. I hope your son gets better. Please test him for other infections aside from strep such as mycoplasma pnemonia and ebv, mono. Good luck!

I don't know where to turn anymore or what to do. I feel so helpless. I thought having this pandas diagnosis would get my son better but now everything is all back and worse, new things started to develop. My son has a history of many positive strep cultures starting before 2. Who knows how many times it went undetected because he didn't have typical symptoms. At first I suspected ocd, then he had some vocal humming and that led me to a neurologist last year when he began banging his head on hard objects. Turns out he had a tough strep infection to get rid of, after 10 days on antibiotic he tested negative on rapid but positive at the lab. At that point treated with cleocin. I found a pandas specialist and he wad treated long term antibiotic. We were fighting mycoplasma too and then mono. Eventually head banging got better his ocd was controlled to a point, but then again this year seemed like was getting bad again, extreme odd and repetitive phrases. He had 2 rounds of ivig and I know there are many positive stories but his is not one of them. After his second time which was in October, he got progressively worse. Everything that was gone due to being on abtibiotics is back. He began banging his head again, it is unbearable to watch. He is hyper, needs his compulsions met by me, will interrupt, be nasty demanding and scream ease piercing screams if they are not met. He doesn't rest for a moment always talking....ok....ok....ok drives me nuts because he needs me to say it just right. The newest thing he does is to bite on hard objects, or tap his teeth on it. Not only is he picking up germs into his already compromised immune system; he might knock out his tooth. We are back to square one and worse off. We just started him on an ocd medication tonight because it takes up his whole day, impossible to live like this. He keeps walking up saying he doesn't feel well and his throat hurts. He was just taken off zithro for 10 days to take cipro in case he still has mycoplasma. I am at a loss of what to do, his head banging getting worse and he taps and touches everything. So scared for him. Any advice?

My son would purse his lips as if he was blowing me a kiss. Seemed sweet at first then I noticed it was a tic. He would want me to mimick it back. Then it got worse, he would actually need to physically kiss me but can be my elbow or butt, wasn't just a sweet kiss on the cheek. Before he goes to bed needs to kiss both of my cheeks then hug and a routine goodnight. I researched this alot finally found a site where they listed a kiss as a tic, think was tourettes site.

What is the kissing tic like that you and surfcity mention?

I am sorry you are going through a difficult time, unfortunately many of us can relate. I just wanted to mention that blowing rasberries may very well be a tic. My son had and now has again a kissing tic. Speedy recovery!

My son had mycoplasma we knew this through bloodwork. He was treated with biaxin and more presently has been on zithromax to prevent any steep or other infections. Well seems like he picked up another mycoplasma infection even while on zithromax. Mycoplasma is very stubborn and hard to rid the body of especially in pandas children.

I totally agree. In addition Cunningham asks for a $400.00 fee to assist with her research, however, they won't turn away anyone that can not afford the fee. You can make a donation that you are comfortable with. I know this because when I contacted them and then found out about the fee I said I would not be able to go ahead with it due to the fee. They then told me they won't turn away anybody. I had my 3 children tested. Still waiting on the 3rd test results.