colleendonny

is when I put my DD4 to bed and she called me up an hour later, saying she couldn't stop saying bad words with her mouth closed. Followed by symptoms which included OCD, handwashing, intrusive thoughts, facial tics, vocal tics, SPD, rages, fight or flight, a few days of trichotilomania, and emotional liability. Thank you all for helping me along the way of this unexpected journey. Since then, Dr. B diagnosed my son as well, at age 2, and we also think my other DD may be PANS as well. She stared an eye blinking thing at 7 months old. I can always come here for support and advice and it is very much so appreciated.

You need to see a PANDAS specialist. They will help.

Good to see you today, Melissa!!!!! And nice to meet you too, Philamom Cobbiemommy, I didn't meet you, but best of luck tomorrow Hang in there ladies!

No, you do definitely not rule it out!!!! Has your child had any recent vaccinations? That could be be a cause... Or could be a viral trigger. My DD and DS are diagnosed, with no elevated strep titers. Triggers can be vaccinations, virus, mycoplasma, lyme, lyme co-infections.... They can flare from being around people who are sick.

I will be there tomorrow as well . But just an appt, no ivig. Good luck tomorrow. Hope all goes well.

Just switched DD5 to kids chewable culterelle probiotics when her Jarrow sach b. ran out. She has been behaving so much better. She keeps saying all her PANDAS are gone. Before if I mentioned PANDAS, she would tell me her bad words would come back. Can probiotics really make a difference in the last of symptoms?

I was at the protest for a short while with my three kids, between AM kindergarten and preschool and when I had to work in the screening. I connected with a few moms from here, from my support group, from the parents of kids with PANDAS FB page, and some moms that I just met. I was also introduced to Elizabeth Wray's grandfather and Lynn Johnson. It was peaceful and people did stop and listened and took some flyers. I hope we helped at least one family, and I hope BCH will soon be on a path towards accepting PANDAS. My fingers are crossed!!! My diagnosed children, DD5 and DS3, held signs. There was a mom here who was also in a similar situation with her daughter a few months back. She held up a sign saying how abx worked for her and her friends had a sign that said abx saved her best friend. There is also a video of her saying her results from abx treatment. I put my daughers story on the BCH page. She has the big smile with no front tether in he polka dot dress!! We had personal experience with that hospital and I was not pleased. Please, post your kids pictures and their stories!!

I know there are many kids here who have a hard time with taking pills. My DD5 can swallow a big Sachs B., but not my 3 yr old. I was at CVS buying probiotics because we ran out of Sach B. and noticed now that Culterelle has kids chewable probiotics. My kids love them!!

Google panslife. It is a blog I read. She is selling t shirts.

Wonderful :)

Dr. Jenike is wonderful. Everytime I email him, he responds usually within the hour. Talk about a dedicated doctor!! There needs to be more passionate doctors, such as him, our PANDAS specialists, and others who will go above and beyond to help these suffering children. I hope he can get some help for Elizabeth. I cannot imagine the pain in their family right now. Children's Boston should be ashamed of themselves.

Why can you not take Sach b. with an anti-fungal? I have been

Hi, I live in MA, and we see Dr. B in CT. Is that an option for you? There is also someone in MA, who may be able to help you, but I am not sure if she is accepting new patients.

My son does not have ASD, but Dr. B diagnosed him with pans. I would have never guessed, unless DD was diagnosed. Can yeast overgrowth cause stims/ tics? I read and the readings suggest it could do so. He is tsh is slightly, maybe hypothyroidism? How can this relate? Thanks ladies!

DS3 came down with a horrible groin area yeast infection last Saturday. He was on Augmentin at the time for a Pandas flare up, in which the symptom was stuttering again. He was doing well on it, with some belly aches. Was, and still is, giving 1 capsule Sach B. About 2 weeks into the augmentin is when the infection came. We started topical nystatin, without improvement for 24 hours. Pedi also wanted him on Keflex, rather than augmentin. So we did and started on oral fluconazole (sp?) to fight the yeast and still topical nystatin. His infection is well now, though we are finishing up the fluconazole. Starting @ the same time he started finger stimming. He arched his fingers and twists together the first two together and last two together. It's almost constant. Be woke up from a car nap hysterical yesterday, screaming at us to not touch him. Face was red he was screaming, crying and kicking for 15 minutes. Does this sound like yeast overgrowth behavior? The stimming too? He did well today at his first day of preschool

DS3 came down with a horrible groin area yeast infection last Saturday. He was on Augmentin at the time for a Pandas flare up, in which the symptom was stuttering again. He was doing well on it, with some belly aches. Was, and still is, giving 1 capsule Sach B. About 2 weeks into the augmentin is when the infection came. We started topical nystatin, without improvement for 24 hours. Pedi also wanted him on Keflex, rather than augmentin. So we did and started on oral fluconazole (sp?) to fight the yeast and still topical nystatin. His infection is well now, though we are finishing up the fluconazole. Starting @ the same time he started finger stimming. He arched his fingers and twists together the first two together and last two together. It's almost constant. Be woke up from a car nap hysterical yesterday, screaming at us to not touch him. Face was red he was screaming, crying and kicking for 15 minutes. Does this sound like yeast overgrowth behavior? The stimming too? He did well today at his first day of preschool

Dr. B will be great help! Do you live in the Boston area? We do... There is a support group meeting soon if you are interested.

You are in my thoughts and prayers. Good luck with everything. You have given me some great advice as well since our journey.

We see Dr. B in Darien, CT. We have bcbs Massachusetts. He does take our insurance. Although, you should also factor in travel/ time off work etc.... Good luck in your decision. They are both exceptional doctors.

Thanks for your replies The doctor thinks it is yeast. So have him on Nystatin cream now. Prior to that we did try Lotromin and it seemed to make it worse, adding a bruise like rash on his inner thighs. He does seem happier now while on nystatin. While his PANDAS seems mild for now, I think we will stop abx for a while. His last flare up seems.resolved. His biggest symptoms seemed to be night fears and stuttering, but both have resolved with about 15 days on Augmentin. From experienced parents, is it a good idea to keep him off abx for now since his symptoms seemed to resolve? I would hate to see his infection look worse....

I do not have the post, but wanted to say Congratulations! What a great new adventure for you:)

DS3 is very red in his groin area. It looks painful and it is hurting him. He has been on Augmentin 600mg 1/2 tsp 2x per day. Could he have a yeast infection? Or is it more likely diaper rash related? ( He still wears pullups).

PMd you.

I would say no and I think the pedi may agree given the family history... And Dr. B will definitely say no, and will give her an exemption letter. The more I research vax, I wish my kids never received any!

I need to do some serious researching on methylation and MTHFR. My DD5 doesn't have the mutation, but my DS3 is positive. Homozygote for C677T. LLM, I would love any links that you may have in regards to this