thereishope

Evidence-based guideline update: Plasmapheresis in neurologic disorders . http://www.icnapedia.org/content/home/news/1722-evidence-based-guideline-update-plasmapheresis-in-neurologic-disorders Final sentence "There is insufficient evidence to support or refute the use of plasmapheresis for myasthenia gravis, pediatric autoimmune neuropsychiatric disorders associated with streptococcus infection, and Sydenham chorea (Class III evidence, Level U)." Is this statement anything new?

Pandasology...we should totally make up a dipolma with this for everyone to frame! Wikipedia...ooohhh...never thought of that. You mean the internet has stuff about PANDAS on it? Really? And Wikipedia is the best and most correct place to find it?! Heavy sigh.... Yes, they meant well, and hey, you got a story out of it, right?

Good to hear things are improving! As for being sensitive to things, that just comes with the territory. When they are sick, we worry about more symptoms surfacing/worsening, when they start to get well, we notice every little positive. Then we notice every quirk and things that could just be childhood oddities but we have learned to look at things as possible symptoms in the quest for catching another onset asap. PANDAS PITAND parent just become very in tune with their kids.

Did they run cultures on the kids as well? Both my son and my husband have gotten false negative rapids just to have the culture come back positive.

Something to remember is if someone is on antibiotics they can get a false negative strep test. So, it could be from exposure,especially if you think strep is still going around in the siblings, but you can also up or change your dd7's antibiotics in the event she did contract strep and is getting a false negative test result.

I think if it's the right antibiotic (which you won't know right off the bat), the timeline varies for each child. For mine, I would say I noticed some type of improvement in between the first 3-5 days of antibiotics. But I say "some improvement". It's not like he came back to me as fast as he left. Journal and/or chart progress so you can be objective, look back and see if there really is progress. Here's a charting system many have liked http://www.latitudes.org/forums/index.php?showtopic=6685&hl= If you have done so already, test eveyone else in the house for strep if that was the trigger for your daughter. There is an antibiotic section with your question in the PANDAS FAQ as well http://www.latitudes.org/forums/index.php?showtopic=6266

Happy belated birthday, Emerson! My oldest son's bday is on the same day:) Have you ever discussed birth control to help with the issues that run in your family. I believe some will help lower your chance of ovarian cancer and cysts. Good luck getting your license and prayers and good thoughts being sent for your friend.

I'm glad you found the UTI! That could be causing the other symptoms you mentioned. It can all be related. Hopefully once you start the antibiotics and clear the UTI, you'll see improvement in everything else. Retest him later to make sure the infection cleared.

First, glad you're having a good day! Second, if you're going on the 4 hour mark and you see no signs of withdraw, that may mean she will not expereince withdraw. Wouldn't it be out of her system by then and if she needed it, I would think her body would be craving it by the 4 hour mark. May be wrong, but just a thought.

I'd say try the ERP first. When my son saw a psychiatrist for his residual OCD, we were told to give therapy a certain amount of time first then we'd discuss Zoloft if he made no progress. My son was 5. At the time, I didn't know the issues PANDAS kids could have with psych meds. Luckily, my son did well enough with therapy that we never needed to discuss possible Zoloft again.

Unfortunately, some parents (not all) do see a connection to vaccines, their child's first exacerbation or a worsening post vaccination. At 5 1/2, you child may have recieved the MMR and/or booster chicken pox which are both live. Many consider live vaccines to carry more risk.

Why were you taking those meds...for myco P? I believe you herx with that as well.Did you go from no meds to both? If so, like Denise said, it could be really affecting your gut.

Try not to feel overwhelmed. Just start with the most basic testing..a rapid and culture. Some say skip the rapid, I say do it since if that's positive, you get antibiotics faster. My kids don't get symptoms of strep,yet they have tested positive of rapids and cultures before. But my kids are not carriers, they clear on a regular 10 day script and do not continuously test positive. Rapids do have a high failure rate so don't let anyone tell you it's reliable, even for the adults. My husband has had false negative rapids before.

I think everyone on here wishes they could have a do over and do things different. I have a long list of shoulda, woulda, couldas. Take that anger, frustration and even guilt and let it fuel your fight.

I see on the Lyme board you also stated that he may have a ruptured ear drum. If that happens, the ear won't hurt as bad for the child still the pressure is reduced. My daughter had that happen twice. If ruptured, the ear drum will heal on its own once the infection is gone. She was also given ear drops like your son, but I have to say I don't know if they helped since she was a baby at the time and she never stayed still long enough for me to put them in and hold her down in one position for as long as I was told. Amox did not work for my daughter's ear infection. They tried clindamycin and she threw that up. She ended up going on Omnicef and that rid her of the infection. If you still have drainage from the ear after a couple days, call the doctor office back. They will want to change the prescription. Don't wait for the whole script to end.

In regards to ear infections, this article states that Augmentin is the most effective for them http://www.nejm.org/doi/full/10.1056/NEJMoa0912254 I think if you were to request Augmentin for an ear infection, the doctor will probably oblige.

Yes, it was the DHist. I start it on my PANDAS son as soon as I even suspect allergies are starting. Last year, I started my PANDAS son the moment I questioned allergies but I waited to start them on my non-PANDAS son until I was sure. Well, my PANDAS son was never miserable, my non-PANDAS son had a harder time getting the allergies in check and ended up having a bad sinus infection from them. So, this year I will start them at the same time for both kids.Do you use a neti pot? I don't think I could get my boys to use one, but I think I will get one for myself.I just use saline spray on the boys. Also, do you give the D-HIst Jr? If so, check what the best dosing is. You can give 2 tablets at a time.The thing with that is they are expensive. If you don't think the allergies ever wound down and they always seem stuffy/runny, or their voices seem off, take them to make sure there's no sinus infection. Vickie, what natural product are you using? We have tried D-Hist with very little success, but we have always started after the sinus crud wound up so I don't know if that would make a difference. (Actually, I don't know that our allergies have wound down much if at all in the last year or so - there are just some times when the drainage is significantly worse like during oak pollen & grass pollen)

Allergies were a trigger for my son. When allergies surfaced early on in recovery, the setback they caused was as bad as what a strep infection would cause. Once I got his allergies under control, he then began to improve agian. Definitely a direct connection for my son. So, now I've learned to mark on the calendar when they start each year and try giving allergy meds or supplements before they have a chance to really kick in. As for allergy meds/supplements, each child reacts different to them. Claritin worked at first then on day 11 made him hyper. Benadryl works for my son w/o making him hyper or tired. I have now switched to natural and they work great. Also remember, allergies can cause sinus infections. My son never had tics, but allergies affected all other PANDAS symptoms.

Did she have a root canal prior to the crown being put on? If not, it could be the root finally started to die. Call the dentist this morning and they will fit you in today. Since it's a baby tooth, perhaps she'll lose it sooner than others since some trauma was already done to it.Or...maybe just the crown is loose and the tooth is fine. I've had a crown loose enough to fall off before. It would wiggle just like a loose tooth but the actual tooth under was intact and fine. They just had to recement it.

At least I now know my husband isn't the only one who isn't like the awesome dads that visit this website and want to learn about the disorder and be hands on! I think this is where it comes to play who does the most research. The more you read about this disease, how other kids are affected, it becomes ingrained in you and just part of you (how to see symptoms, how to react...even if it's hard, possibly how to treat). If your other half doesn't follow it like you do, they just see it in a different light.

It sounds like night terrors to me as well. My non-PANDAS son had these. They didn't happen often and he outgrew them. He's going to be 10 now and he occassionally will moan in his sleep like an extension of a dream. Moaning something like, "leave me alone or I'm sorry". We talk to him, he'll respond only a little, but we pretty much just have to wait for him to fall back asleep. He doesn't remember any of it.

Is he still taking the Singulair? I know some have had bad experiences with that particular allergy med. That's at least something to try....switching allergy meds.

Did the doctor say he can take Ibuprofen with the steroid? If you didn't ask, don't give them together again until you can ask a nurse or doc. Technically, you're not suppose to give them together since it's harsh on the stomach.. You can always call those that released you and ask. Hope he feels better!

I always thought croup was a virus too. My son only had croup once and it was prior to PANDAS. He had no PANDAS or PITAND reaction. He was given 3 days of a steroid (no antibiotic) to reduce swelling. He still had swelling and a high pitch voice at the end of the script. It eventually did get better. My son actually had no cough at all when he was dx via xray with croup.

After 2 asymptomatic strep infections and a dx of PANDAS, our ped sent us to an ENT. The ENT wanted tonsils out solely because of PANDAS. My son did have t and a surgery. He was doing well at time of surgery so I cannot say if surgery would have helped symptoms since symptoms were not present at the time. Like PMom, I was told it lowered his chances of strep by 80%. I see it as he can still get strep (and did get a strep a month after surgery) but I will never know how many times having his tonsils removed actually prevented another infection or how many it may prevent in the future. For my son, I do not regret one second having them removed.