thereishope

It seems like PANDAS is beating so many people up lately. Anywhere you look someone is worsening, so many have strep, it's like we are all locked in this world of worry, sadness, anger and fear. If it means anything, we are all here for you. Even if I may not be an official panda, I do get what you are saying and I have felt the way you are. What can I say except it sucks.

I would hope that if a child is on antibiotics when they contract strep, it may slow the replication down at least enough that the new antibiotic has less work to do and the strep can get erradicated faster. Would that even make sense? I also like to think that no one knows how many times the prophylactic has prevented infections, this is my same mind set as having t and a ....you never know how many it prevented. Can you remind me, in the first one dx with strep this time, what made you bring her in suspecting strep?

I'm glad you're seeing good progress!Here's your dancing banana ....

No, I haven't had that problem. I think you can block people if you keep getting them.

I'm having problems reading some threads. I click on it and the page is just white. Not all threads, just some. Is anyone else having problems?

I agree.

I'm still a little confused. Actually, if the daughter was dx with Encephalitis and possibly in correlation with vaccinations, that reinforces the red flag of a possible autoimmune reaction. However, I actually understand the mom not being able to see her daughter unless supervised...again, she had a standoff with police and fired a gun! Yes, Peg, I agree that her statement about not being psychotic cause she can read, write, spell is her defending her daughter's intelligence and the mom's homeschooling, not her mental state. I feel bad for the daughter. It looks like a story that really needs guidance, but I think the mom's view is blurred and with the info I see, I don't think the root cause of all of this, the daughter's change in mental state, will be addressed.

This does send up a red flag. However, the mother picking up a gun and shooting into the air wasn't the best thing either. Why was CPS involved in the first place...was it just because she refused to give the daughter the meds?

Myco P is suppose to be responsive to Zithromax but our PANDAS PITAND kids don't always fit the majority rule. My non-PANDAS son was give a 5 day script for Zith, the cough lasted for about a week after the script ended (doc said that's expected and normal) then he was fine. I remember reading when Myco P first became a highly discussed subject on here that some were being given Biaxin. Whether or not that finally cleared it, I don't know.

Personally, with an ongoing cough lasting a week or more, I would probably go to the doctor. Even if you've been on Zith, I'd get it checked out.I don't like giving cough meds as I see it as the body's way of trying to get rid of something. Is there a fever, extreme fatigue? A cough can indicate many things. One thing the doctor will ask is if your child has allergies. So, if they do, try to get allergies under control and give meds for that for a couple dayss you can confidently say to the doctor, it is not allergies. As for what meds are okay to give...there's no cut and dry answer for that. My kid takes Benadryl great, yet I know others who have experienced hyperactivity and I think rages from it. Claritin makes my kid hyper, but works fine with others. You could try saline spray to try to thin out mucus as well. As for natural supplements, here's this... Bromelain: A strong pineapple enzyme, bromelain has proven mucolytic properties. As such, bromelain supports normal mucosal tissue function and enhances the absorption of quercetin. N-Acetyl L-Cysteine (NAC): An amino acid that is also a natural mucolytic, NAC reduces the viscosity of mucus. Clinical studies have proven oral doses of NAC to be an excellent means to recharge cellular glutathione, a foundational antioxidant.

I am so happy for you, your son, and family!

I agree. If the cough stays then get it rechecked.Cough was my son's only symptom. We have allergies in the picture too, but the lungs checked out clear. I just don't know what to do anymore. I can't watch another child go down the PANDAS hill. If his mood and the cough don't clear in a couple more days, I'll have to take him back in and insist they run some bloodwork

My non-PANDAS son had a cough when he was dx with Myco P. We dismissed it since we thought the cough was due to allergies. Anyway, our doc just listened to his chest and diagnosed it.

I would guess a good number of parents on here have some OCD. That actually probably plays a factor in the kids getting better.

Is your usual sitter a teen, an adult from a service, other parents, etc? If time permits, you could do a quick interview ahead of time a few days prior and verbally tell them the things in your letter. This also allows you to see their expression when those things are told. You can also have a trial sitting with you in the house in a different room or just a fly on the wall.

Good for him! Does he like the attention? My son use to hate any attention put soley on him at school while sick.

Well, there is a chance all the OCD is gone. But, OCD can involve obsessions which occur more in the head. Also, there is a chance that there is still some OCD remaining, but it is slight or you and she may not recognize it as OCD. Often, it isn't until the OCD cannot be completed does the real anxiety surface.As for hiding it...kids do that too. My 5 year old did. Remain observant and you can try to talk to her about any worries or thoughts she might have that she doesn't like and wish would stop.

In my area, I have read that there is more strep and flu than usual, but I haven't read about any invasive strep or hard to treat strep in my area (knock on wood). When I read that same Michigan story, I searched for any current strep stories in my area.I do know that the flu hit later in the season than usual and that plays a role in strep hitting hard now too. Flu and strep often go hand in hand. Glad to hear you're seeing improvements, Peg!

I can't give any first hand accounts since my child never took any , but don't know if you ever saw this... http://www.latitudes.org/forums/index.php?showtopic=6265 Here's the link to the Murphy study cited in the above quote http://mbldownloads.com/0806PP_Murphy.pdf

I'd like to add that there is no way anyone can state this percentage. One thing Ive found on this forum is that one persons opinion can quickly be blurred and remembered incorrectly as a fact. So just for the record, there is no study or anything similar to back that percentage up. Even if a casual poll is done now, it is still not true to form as those PANDAS parents who have found recovery, on route to recovery, or are happy with current treatment, may not be on the board anymore. Those absent people would be a decent count of the non-Lyme tally. Also, I believe many PANDAS parents whose children do not have Lyme just dont visit Lyme related threads on this section of the forum as it causes some distress and they feel they now need to defend their childs illness and diagnosis on here as well. So they may not even participate. Also, may I add that if a child reacts to other triggers, even if strep is the known original culprit, they can still be PANDAS. Also, I think everyone is in agreement that other triggers can exist as the original culprit such as Mycoplasma Pneumonia for example (PITAND). I think across the board, no one says strep and strep alone at all stages of this illness can be and is the only possible trigger

Good point, Peg. When I first read this, I got excited,then I went back and read other people's comments which mirrored yours.

CDC to Study Vaccines and Autism http://www.huffingtonpost.com/david-kirby/cdc-to-study-vaccines-and_b_837360.html Okay, I know this is big for Autism, but wouldn't it be great if PANDAS or PITAND found its way in this? It does state,"...The CDC said it will convene an "external expert committee to offer guidance on the feasibility of conducting such studies and additional studies related to the immunization schedule, including studies that may indicate if multiple vaccinations increase risk for immune system disorders." It also states, "The plan also seeks to deternine if the mercury-based preservative thimerosal is associated with increased risk for "clinically important tics or Tourette syndrome."

If they say it's controversial, I simply respond "No, it's not". I like the "Unless you can disprove PANDAS, shut up!"

I usually practice different responses before going to the doctor. Then when I'm actually there, I blurt out something I later regret. Unforunately, my mouth always chooses to give a long explanation with too much info instead of a cut and dry one.

Could it be that Zith resistent strain of strep? If the Zith wasn't killing the strep, then I would think the predisone didn't have the right "foundation" to do its magic. In fact, could the prednisone may have laid framework to make this particualr infection worse?