peglem

So, is he on an abx right now? Sorry, sorry, sorry....relapse is the pits!

Good luck with it Melanie- happy for you....and sorry, too!

We've only been home @ 3 hours, and I have the sinking feeling that the easiest part is behind us and we indeed, as others before us, are in for a bumpy road to healing. The past 2 hours have been a series of "fixating" on items that for some reason upset her terribly. She clutches the object tightly in her hand while she totally freaks out and smashes her knee into her face. If you can manage to get the offending object away from her (with minimal injury to yourself), and hang on for 10 minutes or so, she can calm down. But then the whole thing starts over about 10 minutes later with a different object. I'm so tired. I need to keep reminding myself...this means its working, this means its working, this means its working....I hope I can send her to school tomorrow, I hope I can send her to schoo....whoops! this means its working....

When we saw the local rheumatologist w/ our Cunningham results. He called Dr's Cunningham and Latimer, then refused to treat, saying he did not have the expertise to deal with it, but Dr. Latimer told him that she would be willing to see Allie. So he recommended we see her. I was able to turn that into a "gap exception" with UHC and they paid it (surprisingly quickly!) at in-network rates, so we just paid a copay. I did have pre-approval from the insurance company before the appt. So, I think it would help if you had an in-network immunologist or specialist who would recommend Dr. B, on the basis that Dr. B has special expertise that can not be supplied by any in-network physicians.

Day2 went very well. The nurses where we go are so good with my daughter! One of them mentioned that they have been getting several PANDAS patients from Allie's immunologist and had done some research on PANDAS because of that. They asked about Allie's symptoms and when they started. I explained to them about all that and told them about Dr. Cunningham's research and gave them the refresheverything/PANDAS address and asked them to vote for us!

I think proxy vote is people who will just give you their sign in info and then you casts the votes for them- like I do for 4 other family members!

Its a tough wait, isn't it? One day your daughter will realize what amazing things you did for her!

Thanks, everyone! Gosh, you make me sound so special! Maybe dealing all these years w/ this stuff has made me good at it? My daughter was on 30mg! of valium this morning when we had the tussle over getting in the van! The immuno who ordered Allie's IVIG told us that her pediatrician would have to be in charge of pre-medication. Since we already have an "as needed" valium rx that we used to fly her to DC and back- we just use the same dosing strategy that got her on the plane! And we use emla cream for the needle stick. It takes 10mg of valium to do a blood draw, unless she's in exacerbation, then it takes 20. I don't like that I've had to resort to this, but, if she didn't need the valium, she also wouldn't need these procedures that she takes it to get through.

Today was more difficult than our last 2(low dose) IVIGs, not because of the dose, but because Allie is not in as good a place as she was then. It took us 15 minutes just to get her in the van to go this morning-she was self injurious and just refusing. I had to throw an object she was obsessing over to the far side of the van to get her in! Once the IV was in, the rest of the day went okay. I just know we'll have a struggle tomorrow, too. And probably it won't work to throw in an obsessive object! We'll get it done. The staff is wonderful and supportive. Gave us a # to call when we leave the house, so they can send down to the pharmacy for the gammagard and it'll be ready to go when we get there. We have an appointment with her pediatrician on Monday- possibly going back on rifampin for awhile, but need to get the BM testing back 1st.

You must be my husband's other wife! My hub was exactly that way. And when I found new info or finally made sense of something, I'd share it- because I was excited about it but also because talking about it w/ somebody helps me get it solidly fixed in my brain. He didn't try to get it for a long time, mostly because he didn't see that my knowing or his knowing would get us any help for our daughter. We've been through many doctors who did nothing to help. What finally turned the tide- when we got the Cunningham results (I kind of did it behind his back- he did not want to spend the money). Seeing our daughter's results on the CamK graph, solidly in the sydenham's range, and seeing Dr. Cunningham's notes...he started asking questions. That "something tangible to hold onto" finally got through to him. Thank God I had this forum, so mostly I could answer his questions. He started going to doc appointments with us and participating...and when local specialists decided not to treat and referred us to a PANDAS specialist all the way across the country from us....he was supportive! I still do all the "leg work" as far as finding out info, but its been such a blessing to have him on the team!

That's a fantastic idea! I have this person voting for us from another forum. We're pretty close cyber-friends and she's voting for us w/ several of her family members. She's very competitive and into statistics. She has a question @ how the rankings are determined. She looked for info on the site and couldn't find any about that. So does anybody know? Is it a straight vote count? Average daily vote? She also noticed (I sure didn't) that the rankings are updated at certain times of the day, not continuously. She is really analyzing everything there (hmmmm, OCD?). Here's what she wrote me about voting for other people in the 50K category...I'm still not really getting exactly what she means but... Does anybody see what she's getting at? She wanted me to ask and she's sooo into helping us win this thing!

Y'know, even if this was attention based- they have wrong solution. The way to deal with kids who act out for attention is to meet their need for attention in positive, acceptable ways. Like make them teacher's helper, teach them appropriate ways to get the attention they crave. So, the only conclusion to draw is that these people are either completely incompetent or they have a hidden agenda. (Like drive you out of the school?)

Mom w/ OCD said it all, but also, have an idea for a supportive and appropriate behavior plan that will meet her needs and HELP her return to the school environment successfully.

I NEVER let school staff speak with any of my child's physicians- huh-uh. I don't know what the school is going to say or how they are going to present the problem in their own skewed way. I will bring them reports and recommendations from the doctor, but I will decide what information gets shared. I'm sorry you're stuck in this situation. I would not send my child back to that school. Even if the behavior plan changes to reflect what she really needs- that attitude will be there. I seldom get angry over anything these days, but stuff like this gets my blood boiling. Is this their version of positive behavioral support and least restrictive environment? Ask them for documentation that this method of theirs is successful in helping children w/ anxiety based behavioral problems. They've got some nerve making any child "earn" the "privilege" of being treated w/ dignity. And when their plan fails- (you know it will), they will blame it on your child for noncompliance w/ their assinine demands. Consider getting an advocate-

I usually vote late at night here (west coast=beginning of the voting day), and saw tons of synergy votes from the end of yesterday and the beginning of today.

ditto on that. I mis-typed the email address once and it would not accept until I wiped the whole thing and started over.

27th!!!!!!

Hi Sally, what insurance do you have? Several of us on this board have been able to get an "exception" (I don't know if this is the right term!!) to the rule of only 6 pills Azith. per month. It's either a form you fill out...or if the doctor just has to call? Anyway, there is probably a way around that limit. Maybe someone will post with more info. We had this problem 2 years ago (with our HMO), but eventually figured out from another parent, that you can get around it. Our current PPO doesn't care if we get 30 or 60 Azith. in a month! At the beginning of this year our insurance co. switched their med company and suddenly they were saying only 6 pills/month on the zith. I called and talked to them and I don't know if they checked with the doc or what, but I haven't had a problem since. These policies are designed to keep docs from prescribing 3 months worth of meds in one prescription (so the patient has only one copay instead of 3), but if you have a legitimate medical need (as per your doc) for the greater amount, they'll usually let you. I asked them, "isn't it up to the patient's doctor how much medication they need?"

Y'know how labs give kids those llittle "I had a blood draw today" stickers? Last time it had a PANDA on it! Can't decide if that's appropriate (my daughter gets a lot of draws because of PANDAS) or just some kind of cosmic sick joke!

A negative result could mean a) he does not currently have a strep infection in his throat or they did a bad job of swabbing his throat and didn't get a good enough sample. But, no it would not rule out PANDAS. It would not even necessarily rule out strep, since strep can also infect other body orifices. PANDAS is caused by antibodies to strep (but not the ASO or Dnase ones you hear about), not the bacteria itself, and since antibodies hang around even after the infection is gone, he could still have PANDAS symptoms after the infection has passed. If the allergens have not been identified, how do they know its allergies and not infection? My daughter's sinus problems were dismissed as allergies for years before she had allergy testing done- all those tests came up neg. when they finally did run them. Later we found out that she is IgE deficient, and improbable that she could even mount an allergic response. I put the link there. Glad someone noticed! Yes, that's a possibility. And if that's the case you have a good chance of avoiding the "big event" altogether if you get it treated properly. Definitely check out those links Vickie gave you- there is a LOT of info there and it may take a while to cover all of it, but its good stuff and pretty comprehensive of what is known about PANDAS.

It seems like it would make sense for some of us to just keep voting for our ardent supporters so we keep that constant, while others seek out new support and become faithful to them, etc. I do the voting for 5 household members, including myself, so if you want to organize the voting by assigning votes, I'm up for it. Just PM me the list and I'm on it everyday!

' Thank you, Fixit. But I'm a little afraid to put up postings now. I thought this could be a place where we could voice our trials and be hard and not judged. Maybe I'm taking the wrong thing out of your posting. I certainly understand your advocating for the child...but it's hard to feel judged all the time as a parent. If you could take a walk down the street with my son and me, you would see what I mean. The stares, the looks of disgust...it's painful. And, I know my son sees them, but as you said, he's stuck. As a mom I want the people to be staring at me and giving me the dirty looks instead (though many do that as well). But constantly being judged is so hard. Iboll...I can't speak for exactly what fixit means, but I thought she meant that she understands how you feel. This is a place where you can give voice to your difficulties without being judged, so don't be afraid to post. When you said this: I flashed back to probably the worst times in our lives as my 7yo 40lb daughter was so outrageously out of control us big folks seriously considered that institutionalization was imminent. Its so heartbreaking- I can't think about it, even now w/o getting teary. And that's when we decided to use psych meds- we were stuck between a rock and a hard place (did not have an inkling about PANDAS yet) and chose the hard place, because maybe we could make it a little softer. And your right it sounds horrific...it IS horrific! I'm so sorry you're in that place right now. I wish I could tell you that we found a psych med that helped- Lord, we tried so many...a few have helped a little, but I feel guilty using the valium, feel guiltier knowing it could help her and not using it. Sorry I didn't answer you sooner to sympathize- it still hurts to think about it, so I try not to.

Here's a paper you can show the psychiatrist on use of SSRIs in PANDAS: http://mbldownloads.com/0806PP_Murphy.pdf If you feel she's still open to learning, you can find informative papers here to help her catch up on the research. http://www.latitudes.org/forums/index.php?showtopic=6265 I think (unfortunately) its natural for docs to go to the NIMH page for PANDAS info because they are supposed to be the authorities and they were the ones who funded those initial studies. But, the fact that she went looking for information may be a very good sign that she is willing to learn what to do to help your child. I know how lonely this can get and trying to get support from doctors is very demoralizing. But, if you have one who is interested, especially a psychiatrist, (because they likely have other PANDAS patients that don't know it yet) you may be able to provide them with information that will not only help your child, but several others as well- and that can feel pretty good! Sorry the teacher doesn't get it...I think in many ways that's a more difficult situation. W/ docs, at least you can keep looking for someone who knows better or is willing to learn. But you're pretty much stuck with whatever teacher you get...and how sad that your child, who is already struggling with this disorder has to go face that everyday. I'm sorry.

This is just my personal opinion, but I believe that any onset of neuro or psych symptoms has some underlying medical cause. Doctors seldom check for underlying causes and treat the symptoms instead. In the case of PANDAS and sudden onset, many families look back and realize that what seemed like a sudden onset was really a rapid and dramatic increase of symptoms that had been there already, just to a lesser degree. Those sudden explosions of symptoms are the ones that really get a lot of attention while the periods of less debilitating symptoms are frequently "explained by stress in the environment or childhood phases. Nobody here, of course, can say whether your child has PANDAS, but I think the fact that you see enough evidence to consider that it may be the case is reason enough to pursue finding out. I think you have good reason to at least get an immune work up for your son.

FANTASTIC! And we just broke into the 20s at 29! So, next month, I will be posting their voting info so we can support them too. I'm assuming they are going for the $250K.