ShaesMom

Pixiesmommy- I have the same thoughts as you regarding a particular batch of Prevnar. My thinking is look at how many kids are around age 9. Prevnar was first introduced in the year 2000. Also, look at the clusters in NC & California. It would be really interesting to see if they all received a batch of vaccine with the same lot number. Shae is only 7 but she had her first signs of Pandas shortly after receiving Prevnar. I've never been one to think that vaccines are bad so I'm surprised by my own line of thinking but they injected her with Streptococcus and if her immune system was naturally compromised already who knows what affect it had on her. I did find a study done that was blasting the FDA for approving Prevnar so quickly and it stated that Prevnar would cause autoimmune illness. Of course I didn't bookmark it. Sam

My dd did not have a positive throat culture but her ASO titers were off the charts-1200. I have to put my two cents in and recommend that you have an immunological workup done on your child as well. Many of our kids are coming back deficient in some of the Ig subclasses and failing what is called the Pneumococcal Titers test which means they have an underlying immune deficiency disease. This dx is recognized by insurance and IVIG would likely be paid for by the insurance company. Same advice to Allie if she is reading this. Sam Sorry-same advice to Addi if she is reading!

My dd did not have a positive throat culture but her ASO titers were off the charts-1200. I have to put my two cents in and recommend that you have an immunological workup done on your child as well. Many of our kids are coming back deficient in some of the Ig subclasses and failing what is called the Pneumococcal Titers test which means they have an underlying immune deficiency disease. This dx is recognized by insurance and IVIG would likely be paid for by the insurance company. Same advice to Allie if she is reading this. Sam

Yes! Pandas is to much of a mouthful to try and explain. I'm thinking the name Diana told me they were trying to change it to was Autoimmune Encephalitis but I may not have that exactly right.

And we've been to the Moon! LOL

i think she was the hired NBC medical correspondant. She almost seemed like she was one of the naysayers!

Hi Addi- Glad you found us-sorry you needed to find us!! I can only imagine how incredibly frustrating that doctor's appt must have been! I'm assuming you probably met with a young doc who gave you the dx of Pandas. He/she then went and consulted with some older doc who told him there was no such thing. Am I close??? I can't speak personnally regarding the psych meds because we were fortunate enough to not have traveled down that road. I have read from others that they can actually make the Pandas symptoms worse but you will need to have that confirmed by someone who has that experience. My dd7 has never presented with typical OCD or tic tendencies. She has had severe separation anxiety and raging as her main symptoms. Our Rheumy also tried to tell us that because she didn't have more OCD tendancies that Pandas was not likely. My response--BS!!!! I believe every child is different. Maybe this is because they are at different stages of the disease. Maybe it has more to do with inheritated traits. Who knows and frankly it doesn't matter. We saw a signaficant improvement in my dd while on abx-she was probably 80% back to her old self. We went ahead and had IVIG done and have seen even greater improvements since then. Many of us have requested to have additional blood work done to test our child's immune system function. Many of our children have failed various parts of this blood work which would indicate that they have underlying immune issues which may or may not have contributed to the Pandas. Hopefully, someone from your area is already here and can point you in the direction of a doctor who can help you. I believe Peglem's daughter has had many dx's through the years-maybe she can give you some great advice. Don't give up hope! Sam

I sent a copy of the link to everyone in my addresses including my kids' principal. The principal emailed back saying that a friend of hers' daughter was part of a study 10 years ago on the East Coast because of her Chorea!! She continues to take a monthly dose of abx. She is going to check into it further and she if she was part of the original Swedo study.

Maybe on some level if the medical community jumps on board and says that it is possible for a bacterial infection to cause psychiatric illness they are "admitting" (i'm using that term loosely) that they have been wrong for all these years. Maybe their ego's just can't handle it. It would be interesting to know what Beth Maloney thought about Dr. Nancy's comments.

AMEN SISTER!!!!!

I got to thinking some more about this after my last post and I feel really sad that her son was sick almost 10 YEARS AGO and here all of us are today still having a difficult time finding doctors and getting the treatment that our kids need. Look at how Dr. Nancy Liberman (i believe that is her name) down played the whole situation. Ten years later shouldn't the medical community be more on board--do they think that Sammy was an isolated case? It really makes me concerned about where Pandas will be 10 years from today. That Doctor should have been saying "YES, this disease exists and is possibly effecting 100's of kids-many of them have been misdiagnosed with something else." She should have been telling parents to be your childs best advocate and to look further when given a dx of OCD &/or tourette's.

Is this out of 100? If you think about it that is actually kind of scary! How many kids out there are suffering from this disease whose parents haven't found this board yet?!

What a great idea! Maybe you could write it on a sticky note, so you're not acually writing in the book. I'd write it in the book-too easy to pull a sticky note out! I went to our library last night and asked them to order it. I may buy my own copy by the time they get theres but the next Mom in need of answers will be able to read it.

I think many of our kids have been sick much longer than we may have orginally thought. Sometimes I hate the use of the words "sudden onset" because I think it has definitely been more gradual (in our case) with the last episode no longer responding to the abx as it had in the past.

That is awesome!! I'll be sure and keep you guys in my prayers. I hope this all works out for you. Sam

Thanks for sharing! It is always great to hear the success stories.

It was definitely a very short segment and didn't go into any of the other symptoms other than OCD. I would have loved to have seen the separation anxiety mentioned and they barely mentioned tics. However, it not only flashed the word PANDAS but also the word STREP. Let's all pray that this is just the beginning of something much bigger. Now is the time for every parent on this board to email NBC and tell them they have a ground breaking story that is much bigger than just Sammy.

Just to add to EAMom's comment-stay away from face painting in public places as well. Both my kids picked up Impetigo in August when I let them paint their faces.

We saw immediate improvement within hours of starting the abx. Anxiety level decreased majorly

Okay, I went to the bookstore and actually held the book in my hands. I read the references and the opening acknowledgements. Tears were stinging my eyes just holding the book. I put it back-maybe I'll buy it another day. I just don't think emotionally I'm ready to take that journey with Beth and Sammy. I think Shae's case to date has been pretty mild compared to most and reading about what could still come about is way to scary. I would love to buy several copies and pass them around to friends, family, and the school. Let them really get a good idea of what life has been like around our household these days.

My dd is also strong in math but struggles with reading, spelling, and writing stories. Her drawing is horrible which causes her a lot of stress because her brother is very good at art. Homework is always a struggle and usually results in meltdowns.

Our city library's do not even have a single copy of this book. Isn't that sad! I personally would like to see the schools educated on Pandas and what the first signs look like. Sadly, it was our daughter's teacher and school officials who were pushing for the psychological dx. Even today with how much she has improved I'm not really sure they get it. I'd like to see every elementary school sending home a letter to students parents with information on Pandas and its relationship to strep annually.

I asked if her biopsies would show yeast/candida and I was told yes. I will let you know what they find since obviously she has the immune deficiencies. Our Doctor did tell me that if/whatever they do find will be complicated by the immune issues and we will likely need to consult with an expert in immune deficiencies and the gut. Sam

My dd8 has a canker sore and she is struggling right now. I think she picked up a virus in the hospital or at school last week. Her episodes always increase when she gets a canker sore and her separation anxiety is up too. I agree with you on the virus front. I'd like to give prednisone a try sometime. I'm glad you have made an appt. I hope you get some help from her. We go on the 16th I think. Keep us posted! Susan My daughter always has an increase in her symptoms when someone around her is ill.