browneyesmom

You GO Darlene... thanks for the input!! I just emailed our Ped office about that!

Aha... ok, now that makes sense that the antibiotics are rendering the probiotics ineffective, not the other way around... and it is GREAT to know that Culterelle can be dosed with the antibiotics. That has got to be better than not giving it at all, which is what we were left with at times since I read that. Thanks so much for the responses - I'll check with our Ped about picking up some Florastor as well.

I have read here on this forum that we should give the probiotics at least 2 hours apart from the antibiotics. My dd11 has been sleeping so much the last few weeks that we are having trouble fitting into this schedule. She is taking Omnicef twice daily and Culterelle twice daily also. So... I'm trying to understand WHY we don't want to give them together... from a technical standpoint. I understand that it has something to do with the absorption of one impacting the effectiveness of the other. What I want to know is what is happening in the body that causes this problem? Thanks!

My dd has this from panic attacks... every time she has one, she complains of chest pain and difficulty breathing. She never had them before PANDAS... seems the anxiety is the culprit. To manage them, I try deep breathing with her, visualization, soothing music... anything that might help her to get through them.

Sorry for all the posts... last one today, I think ... Still working on the other items (t-shirts, magnets, buttons, bumper stickers, etc.) that will have the actual image on them - probably through Cafe Press and people can order what they want of those. The ribbons always have to be ordered in bulk for best pricing, which I want, for research fund-raising reasons.

Still working on the other items (t-shirts, magnets, buttons, bumper stickers, etc.) that will have the actual image on them - probably through Cafe Press and people can order what they want of those. The ribbons always have to be ordered in bulk for best pricing, which I want, for research fund-raising reasons.

Also... was thinking I would do something similar to Dr. B's card, where he has "know the signs" on the back... I need to check with him for permission about that. I also want input from you other PANDAS parents... what do we want to see on this card? Please remember that THIS card will likely be given out to other kids, so I want to be sensitive to our PANDAS children's feelings, yet information to others. I plan to list them something like... "Symptoms may include... " to sort of allow an "out" for some of the more embarrassing ones, yet also have them posted for those who may know children with the condition - so they can get the help they need. Please give me your input on what you would like included... Thanks - you're the best!!!!

Also... was thinking I would do something similar to Dr. B's card, where he has "know the signs" on the back... I need to check with him for permission about that. I also want input from you other PANDAS parents... what do we want to see on this card? Please remember that THIS card will likely be given out to other kids, so I want to be sensitive to our PANDAS children's feelings, yet information to others. I plan to list them something like... "Symptoms may include... " to sort of allow an "out" for some of the more embarrassing ones, yet also have them posted for those who may know children with the condition - so they can get the help they need. Please give me your input on what you would like included... Thanks - you're the best!!!!

I just ordered 1000 green PANDAS Awareness Ribbon Silly bands... it was Christine's idea... they will be used to raise awareness and fund research for this disease. ♥ It will take 3-5 weeks for them to make them and then they will ship them to me for orders. I will probably also create an informational card to be tucked inside each packet that kids (and adults) can hand out with them. I'm very excited about this project and raising funds for research to help our children!! I need to ask you guys a question. I do not intend to make any profit off these ribbons... all funds go to support research for this syndrome/disorder... whatever we are calling it these days. I realize many of us are strapped financially... what price would you folks pay for a pack of 10 (with 10 info cards included in the packs)?

I'm sorry I have not been posting very much here lately, other than the updates about the Awareness Ribbon. Christine remains in exacerbation and between that, doc appts, labs, trips to Dr. B, coordinating communication between the docs, and getting this PANDAS Awareness Ribbon in print to raise funds for research, honestly, I'm drained and my house is a wreck. Ugh... but, I'll get back to that later... for now... I have another update on fund-raising with the ribbon... I just ordered 1000 green PANDAS Awareness Ribbon Silly bands... it was Christine's idea... they will be used to raise awareness and fund research for this disease. ♥ It will take 3-5 weeks for them to make them and then they will ship them to me for orders. I will probably also create an informational card to be tucked inside each packet that kids (and adults) can hand out with them. I'm very excited about this project and raising funds for research to help our children!! I need to ask you guys a question. I do not intend to make any profit off these ribbons... all funds go to support research for this syndrome/disorder... whatever we are calling it these days. I realize many of us are strapped financially... what price would you folks pay for a pack of 10 (with 10 info cards included in the packs)?

Happy sweet sixteen Emerson... you're the best!!!! ♥♥♥

Yippeeeee... got this back from Madeline Cunningham this morning in response to email I sent her over the weekend... see below for the exchange we had... :~))) One step closer!!! :~)) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Dear Dr. Cunningham, My name is Denise Grubbs. My 11 year old daughter was diagnosed with PANDAS about two years ago. The last several months have been very difficult for her as we also discovered an immune deficiency of IgG; she’s been unable to eradicate strep throat infection for several months. She is currently receiving HD IVIG infusions. The reason I am writing is because with her input, I designed an Awareness Ribbon for PANDAS / PITAND… you should be able to see an image of it below. There has been a great deal of interest in the PANDAS community about getting it printed (on t-shirts, buttons, magnets, bumper stickers, silly bands, etc.) and I am interested in doing so; however, I want the profits to go to support more research for this condition. I realize NIMH has better funding through the government than you do. Thus, I would like to discuss with you how I might go about sending the funds to support your research. Please advise. You can view a copy of the ribbon here: http://s258.photobucket.com/albums/hh275/dgrubbs1/Causes/ And these are the thoughts behind the design: Support Awareness of & research for P.A.N.D.A.S. Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus: GREEN ribbon represents the healthy future life we want for the victims of PANDAS, The HANDS represent us walking alongside our children, holding their hands, (taken from a photo my husband took of my PANDAS daughter and I holding hands – she chose the one she liked best) WHITE is for their innocence, SAWTOOTH edges for the episodic nature of this condition & its impact on the lives of children and their families. Please share to spread awareness & support research. Thanks so much for all you are doing to help our children ~ we deeply appreciate your work!! Denise Grubbs, RN ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Dear Denise Thank you so much for your kindness. The ribbons are awesome!! If you want to contribute, funds are sent to us and made out to the OU Foundation PANDAS REsearch Fund and you can put my name at the bottom of the check or credit card/ I am grateful for whatever help we can get as we are overrun with work and testing. I hope that your daughter improves. I know these are trying times for families dealing with PANDAS. We are doing what we can. Please let me know if there is anything that we can do to help you. madeleine Madeleine W. Cunningham, Ph.D. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Yippppeeeeeee!!!! I have also been thinking that if local fund-raising walks could be done, we could use the ribbons there as well and proceeds could go to her research!! Yayyyy!!! So excited about this!! Now, to get the things ordered! Ahhh... really busy week this week, but I will really try to make this happen for us!! :~))

Really? Wearing off of Risperdal? ugh... should it be tapered slowly, like some of the others? dd11 is on 0.25 mg twice daily, so a total of 0.5 mg a day... we do have a script for 0.5 mg prn when she rages... have only used it a couple of times.

lol @ S & S Doesn't it? Destiny's Mom... I was just about to post it on CafePress... just a little more "fine print" reading to do first.... but I have not yet done it. I was thinking that I would post it there because I like that anyone can go on there and choose whatever product they want and get the image on it. If you'd like to check prices and let me know... I'm open to looking other places; but, I am also going to have to get a separate vendor for silly bands for kids (my PANDAS dd11's idea!! ) so we are already looking at at least two separate vendors... let me know your thoughts... Thanks!!

We have had dd11 on Culterelle at the advice on our Ped... when we saw Dr. B last month, he told us to bump it up to twice daily - we give the adult capsule.

Peg... sorry, I am not familiar enough with the Lamictal to weigh in on that one; but ... as for the benzos... Ativan made dd11 worse and a Ped Neuro confirmed that the benzos can do that - for some kids, so hopefully, not yours, but wanted to mention. He said to put her on Risperdal, which for our dd, has been helpful. Also wanted to add that I'm really glad you had a good day today.

I'm looking at Cafe Press for the items... hope to get the ribbon image loaded on there soon. I think research funds will go to Madeline Cunningham's work.

Yes, absolutely! If they had anything useful as an alternative to my crackpot ideas then I'd be willing to completely accept the crackpotism as a "my bad." Amen, Peggy!!! S & S... absolutely! Pediatric Neurologist (just one example) who released us from CHKD Christmas morning... "I can see that you two coddle her... " Would this be because I remained in the hospital with my 11 year old for her first hospitalization? Hmm... Today... the child who will let the dog lick her hands all the time... and of course, since she "can't get wet", will proceed to eat after that! However, when pup snagged a napkin and started to chew it up, I was still eating dinner, so asked her to please put that in the trash. She looked at me like I had three heads and said, "Ewwwww, Mommy!!!" (typical response for this... can't touch anything that has been on the floor). I told her again to put it in the trash - here, I offered - you can even use this paper towel to pick it up. She walks into the pantry and gets my nitrile gloves (I'm a nurse) - not one, but two - to pick up napkin on floor.

I hope everyone has a nice weekend... and yes, feel free to use the image. ♥

lol... my dd11 has been refusing to bathe, wash her hands or brush her teeth recently, because she "can't get wet!" Interestingly, when we went to see Dr. B, she hopped right into that pool full of water at the hotel... no problem... and again this past week at another pool! We didn't say one word... at least she's soaking in water ... and with chlorine too!

Bump... also want some feedback about where we might send funds for research using profits raised from sales of the ribbon I designed. I'm trying to locate a place online that will print buttons, magnets, apparel, etc for us, to help in raising awareness and I want the profits to go to supporting research... where do you all think funds are most needed? Thanks!

Hmm... Dr. B ordered Igenex testing for dd11, who he knows has had IVIG... one of them, in fact, at his office.

Please.... everyone keep in mind that it was the INTERVIEWER who made the comment that kids might outgrow it ... her child, who had a mild case, apparently did. She noted Swedo might not agree with her, but did not give her a chance to respond. Later in the broadcast, Swedo did say it is important to continue antibiotic and/or IVIG treatment so they get well. While I have heard of cases where the child outgrew it, it is definitely not my understanding that this is the rule!

Thank you!!!

If you're referring to wanting to see IgG levels around 2000, it is not a typo. That is what Dr. B told us when we met with him 2 weeks ago. Our lab did flag hers as low, but they were below the 'lab range' which was upper 600's for our lab. Note that the statement "I like to see them around 2000 for PANDAS kids was made by Dr. B at our visit for my daughter, who also has CVID. Sorry, I do not know values for a younger child.