thereishope

I am so sorry. Did you explain to the people at the hospital how important it is for him to get his antibiotics? I'm not saying this is going to solve anything, but have you discussed with them giving him Ibuprofen to see if that takes any of the edge off of the bursts of rage? Do the people at the hospital understand PANDAS? He will get better. Believe that. See this as the turning point. You are reaching your lowest and soon, very soon, it will be better. I'll keep you in my prayers. Please keep us updated. Vickie

A lot of people don't realize that the incomes scales for financial assistance through a hospital are rather high. Well, I guess "high" is in the eye of the beholder. I refered to going to one in your county because you are only eligible for the discount if you live in the county. I will take my area for example. I live in Cincinnati. At Cincinnati Children's Hospital if you live in Hamilton county and you fit into their brackets, you can get discounted or free care, even if you have yor own health insurance and you do not need to be getting government assistance. And it's not only for the poor of the poor. No matter what, I say apply for help if you need it. You can apply for that financial help prior to the appt, but the acceptance is good for only 3 months then you apply again. People feel odd at first when you fill out a form for help, but when that money could go to my family rather than med bills, I learned quickly to just apply and see what happens. With PANDAS, we incurred a lot of bills due to bad insurance. I used that financial assistance to help pay for the neurologist, ENT, t and a surgery, and I believe the psychiatrist. Again, it's only when the bill is through the hospital. All ped and reg dr doctor bills, I pay 100% for. When someone in my house has strep, I incur over $500 of med bills to just get strep tests for 5 people! It's ridiculous.

Oh, I should add, if you are in need of a specialist, do try to look into hospitals that are in your county if money is an issue. Most children's hopsitals will offer financial help. They will either give you a payment plan, a discount, or (depending on income and size of family) no charge at all....If it billed through the hospital.

My son sees a developmental ped now. The cost isn't much more than a regular ped. It was slightly over $100 for a visit (not a well child visit). The first visit as a new patient may be higher a is the case with all doctors.

The IDEA book I referred to probably is all the safeguards. It goes into a lot of legal things like how you could ulitimately take them to court, etc. I think I threw it out since I had gotten so many of them. It stands for The Individual's with Disabilities Education Act (IDEA). Perhaps I've gotten other things, but I haven't had problems with them so I haven't had a need to fight them. As for the pinned threads peglem referred to, if you need anything else that isn't listed, let me know. I have a lot saved in my "favorites" for quick referencing. One other article that is not in a pinned thread is one entitled "What every psychiatrist should know about PANDAS. It's not perfect, but it's pretty good. Here's a link to that thread. http://www.latitudes.org/forums/index.php?showtopic=6506

Here is the fact sheet from our forum. it has more details.. http://www.latitudes.org/forums/index.php?showtopic=6265 Also, here is an artcle some have used for school in hopes of getting them to understand... http://www.schoolnursenews.org/BackIssues/.../pandas0903.pdf

I think what you recieve at an IEP mtg is different in each state. I live in Ohio. My son has an IEP for speech. I don't recall getting a 'Procedural Safeguards Notice" but we get a booklet entitled something like "Who's I.D.E.A." or something similar. It's their "bible" that they hand out at every mtg. I agree that you can receive accomodations for workload and special accomodations for testing. School districts give you minimum. You need to always request more, and then you try to find midde ground. What is his IEP for? This can make a big difference in what you get. Sometimes, and this you'd have to fight for, if the district does not have someone who can go out to your house, the district may reimburse if you coordinate for someone to come.

Prevnar vaccine has been talked about before on here so I'm posting this for those interested... http://www.msnbc.msn.com/id/35565447/ns/he..._and_parenting/

Sorry. My son had them out before everyone came up with the great idea of culturing them!

Hopefully changing the meds will help. Wasn't Danny on Biaxin before or was it clindamycin? I remember a bit ago blood tests showed that he had/has Mycroplasma. Did everyone assume it was past tense and it didn't need treatment or did they think the meds he was on cleared it and now they are thinking it didn't?

I knows LLM says she's "just a mom", but she's also being modest. She not demanding popularity or praise. If people make the connection, she's okay with that but she's not screaming it at the rooftops for pats on the back. She's just helping the cause and our kids and doing a great job!

I emailed him a question about antibiotics a few months ago. He wouldn't say what he would do. He just said to make an appt and have AntiDNase B titer run prior to it with results ready.

Oh, I've had that here. Even at about 7 months since full recovery I still am soft on the guy. During a PANDAS exacerbation, a child does really understand what they are feeling or doing. I don't repimand at that time. Then it becomes hard to determine if it's PANDAS or a child just acting up. It is through attempting to repimand and their reaction that you may be able to determine it and whether a punishment should be given. example...I "threaten" to take toys away. During a PANDAS episode that won't phase him. When he's not, I see the worry on his face. Then there's my boy. He's fine now but I worry so uch about losing him again and I know he's been through a lot. The thought of my last words being to him (if PANDAS should take him again) would be a punishment or making him cry makes it very hard on me. I do reprimand but I also find myslef being a little looser in punishments. As for hyperactivity, you can look at the whole picture. Was anything casuing it besides having fun? Certain foods can do it and Claritin on day 11 made him bounce off the walls.

It's like a hot ebay item that everyone waits till last second to bid on. I actually came across another intersting grant (not a contest) that I think would be something to try. But....we would need a lot more info from Cunningham and it requires a formal appplication. I'll pm you a link at a later time.

I'm thinking he's a parent. I'm assuming someone on here. Now my curiosity wants to know:)

I'm just curious...am I the only one who doesn't care for the tag "catching OCD". Iworry some people will think PANDAS is contagious. I understand where the tag came from, since a child catches the strep infection, I'm just not a fan of it.

Who's Keith Moore? Am I suppose to recognize the name? Is it anyone on here? And who's Page-Voth?

For some reason that link didn't work. You can try this one.. http://www.facebook.com/pages/Pepsi-Refres...82.309749594..1 Here was the message... Hi Fans! Last night at the stroke of midnight (and March 1), I logged on to Refresh Everything to put the finishing touches on our application and submit. We had until March 15 or 1000 sent apps. By 12:24, I was told 1000 apps. were sent and I had to try again April 1. Next month, we will be sitting at the computer ...with our finger on "submit" when 12 hits. Sorry for the delay. Thank you for your continued support!

I don't think I'll ever know all the factors that led to the perfect equation of PANDAS for my son. I am confident in saying there is a gentic link for him. I have no concrete proof, but I break down why I think that...well, to me it's obvious there is a genetic vulnerability in him. I've changed our lifestyle in a few ways so how do I know if that helps him stay on the right path? I don't. But he's doing better so I keep up with the changes. Was it the strain of strep in his first exacerbation? I don't know. My other two kids did not contract strep that first time, nor did myself or my husband. So I have no one to compare that first case to. I sit sometimes banging my head trying to figure out what happened, how can I prevent it again. Maybe if I didn't send him to that preschool, maybe if I didn't let him eat so much non organic food and expose him to pesticides... I can drive myself crazy thinking about this.

I'm sorry she is not doing well, but the good news is they are realizing something is going on. Good luck and keep us updated!

Diana does work on the PANDAS Network website, so I will provide a quote from that website that goes more into detail about puberty and symptoms.... http://www.pandasnetwork.org/prognosis.html I do think it is important to remember that the first known cases of PANDAS are just becoming adults now so we really don't know what the long term outcome will be. I think we also need to remember that it is not cut and dry. Perhaps most will outgrow it puberty, but that does still leave a percentage that may not. Why is that? I don't know. My personal opinion is that there are many factors that go into the equation of who outgrows/who does not. What is the status of their PANDAS symptoms at time of puberty, what kind of PANDAS they have (chronic, sudden onset, PITAND vs PANDAS), how long did they have those sympyoms, maybe if they have a hidden/lingering infection at time of puberty, maybe it depends what their family history is, maybe there is a co-morbid dx. I want to add that Diana does not have the mentality of "just wait it out...it will get better". I think it is safe for me to say (and people, correct me if I'm out of place) that she wants parents to fight hard for their kids, be aggressive in treatment. Be on long term antibiotics, go onto IVIG or Plasma Exchange if necessary. Don't just wait it out. The teens and adults who have PANDAS symptoms and reaction now will be the ones we learn from. You guys are the ones paving the road for those future cases. We are all still learning about this and it's obvious more research is needed.

Reactive arthritis can be caused by strep. I believe if the arthritis is caused by strep, over time it will ease up on its own and you may notice a pattern. If was anything like RA, it would just worsen and even slowly distort your hand at times.

Thank you for posting this information!

My son would do that, but I was never really concerned about it. Does she do it in mid sentence or action? As I think about it now, he hasn't done it in awhile.

Joan Pandas Mom. Her son was recently dx with Mycro P by dr T. He was given clindamycin. I suggest comparing notes with her.