thereishope

I can see your thoughts spinning as I read this. I wish I could just give you a break and let your mind rest for at least a day. Did you mean Augmentin XR (was amox xr a typo)? What was on on right before switching to the new meds? As for the high myco p, have you had them retested to see if anything changed? Does anyone know what interval you should retest at to see if it could indicate an existing infection?

I am so sorry. Is he still on the Biaxin and when did he start the steroid burst (yesterday)?

They've sold past ones, so I assume they will sell a dvd of this one as well.

That's the great thing...you do not need a facebook account to vote. Also, you can view the facebook page w/o having a facebook account. You just won't be able to comment on the page. Again, the FB page is just a form of communication. Consider it our homebase. You will be able to vote on the Pepsi page by establishing an account with them. I have one there too. I think it was only a couple questions to get the user name and password. Voting itself take only a second. I've voted for other things both through my FB account and through my Pepsi account so I knew how both processes went. If someone really does not want to set up a Pepsi account and decides not to vote, you can still help by passing the link onto others you know. A suggestion would be through a mass email to family and friends.

Then I'll throw the question to you too...how long do you think people should give amox for before they move onto something else? Did your son worsen for a few days on amox before any improvement?

This anouncement put a smile on my face this morning... From Age of Autism.... PANDAS Presentations at Autism One Generation Rescue Conference Address Tics, OCD, More http://www.ageofautism.com/2010/04/pandas-...s-ocd-more.html

I'm curious, T Mom....my son actually recovered on amoxicillin as well....if someone were to ask us how long they should try amox for before throwing in the towel (knowing that it often doesn't work), what would you say? For me, we worsened at first then it took 3-5 days to see any improvement. I wouldn't suggest the month trial like others do for other meds. Considering the failure rate of amox in the PANDAS community, I say give it only a week then change abx if no improvment at all is occuring. What do you think? Just a word about Amoxicillan. My daughter had a very severe Pandas exacerbation and good ol' Amoxicillan worked wonders for her--during 3 different exacerbations of illness that triggered severe OCD and tics we saw an obvious diminishing of OCD/tics within 48 hours once full strength Amoxicillan was started. Given my choice, at the time, I would have started with something stronger, but in retrospect I am glad I can say that Amoxicillan may work if you want to try it as a first defense, realizing you may need to move to something stronger. Other families have had good results as well with Amoxicillan long term. Our d has been on full strength Amoxicillan for 14 months, and will continue God willing nothing else is required!

I'm pretty sure this is how it works... They accept 1,000 submissions a month and they have 100 runner up submissions from the previous month they automatically carry over for another round. So, overall, there are 1,100 submissions. These submissions are broken down into subcatagories ($5K, 25K, 50K, 250K) that the submitter chose during the application process. To be honest, I don't know exactly how many we will competing against in our catagory. We get the whole month to vote. At the end of the month, in our catagory, the top 10 submissions to get the most votes gets awarded the grant money. Yes, it is a competition. We need votes. The more votes the better. We can vote every day. So, because it is a competition, we will really be relying on the people on here, those on the fan page, and those who we will be branching out to for support. Some info will not be devulged until May 1. In the event we don't get approval, we can resubmit for another month and we don't want to post our stategy just yet

Yes, strep can occur in the nose. However, if you have a sinus infection (which can also be caused by strep), it could be so high up that a swab won't reach it. Some sinus infections have only been found on PANDAS kids through MRI's!

Great news! Thank you for updating.

Have you seen the artcile about the failure of amox and pen in erradicting strep? May be good to bring along in case he gives you the speech about penicillin will always erradicate strep and tries to give you a script for that. Amoxicillin Failure in Sterp http://www.entrepreneur.com/tradejournals/.../169459644.html

Welcome to the PANDAS/PITAND forum. On Dr K's website he states... http://www.webpediatrics.com/pandas.html Allergies can affect PANDAS and cause symptoms to worsen. So, I would think that may be the case with Lyme too? When my PANDAS son's allergies hit last year, they really casued his PANDAS to worsen. Once I started him on allergy meds, it took a few days for the allergies to calm then I saw his PANDAS calming too. But one has to be cautious with allergy meds. Every child reacts diffrently. Some do well on Claritin, some on Benadryl, some on Zyrtec. Just be watchful. The only one I've seen red flagged not take on here is Singulair.

According to my Ibuprofen box, here is the dosing... 48-59 lbs= 2 tsp which is 200mg 60-71 lbs=2 1/2 tsp which is 250 mg If your son is 57 lbs, he's close enough to the 60 lb cut off that you could go to the 250 mg in dye free liquid. Does he take a pill or liquid? Pills only come in 200mg . So, if takes pills, give him only one adult pill.

Ditto above remarks. I'm glad you're staying!

Yes, exposure can cause an increase in PANDAS behaviors. Many parents will compare their kids to being a canary in a coal mine or having a severe peanut allergy. You can discuss with your doctor about increasing antibiotics right now just in case strep was contracted and you got a false negative on the culture (which can happen when being tested while on abx). Allergies can increase PANDAS symptoms as well. Can he take Ibuprofen? That may ease symptoms.

To add icing on the cake, I open up one of those penny saver mailers you get and there's an ad looking for babies to take part in a RSV and Paraflu vaccine trial. Hey, but they'll pay the parents just under $900 to take part!

What are you talkin about? I talk like that all the time

After I asked you that, I remembered your daughter is older. I'm sorry they used you like that. No, the 18-month-old who is pacing back and forth in her crib is my dd. I gave frontline permission to use footage of four kids (including my dd) from a film I produced on autism 10 years ago but they ended up using footage of a child for which I never gave them permission. So I'm not happy with them right now, especially having seen the outcome.

Which baby? The one with whooping cough?

This morning’s post from Pepsi Refresh Project P.A.N.D.A.S. on Facebook... We have to assume we have been approved so we are ready to promote and vote on May 1. We have been brainstorming ideas of how to get the word out and we post that on May 1 as well. Currently, we have 535 fan on our face book page! We can do this! If you haven’t joined the Facebook page yet, please consider do so at ... http://www.facebook.com/pages/Pepsi-Refres...59986829?ref=nf You do not need a Facebook account to vote, but the Facebook page is our main form of communication and supplying information on PANDAS/PITAND to the public. We will update here as well. Thank you for everyone's help and support. For those of you who have been commenting, that really helps. It shows that what we put on there is not just words. When we put faces, stories, and experiences to the struggles we mention, it makes a big impact. I have noticed that when we comment more, we get a surge of more fans. Keep those comments coming!

With my son's first exacerbation in 2008, before we knew it was PANDAS, we took him to the dr and the rapid came back negative. So, the ped said to give him FluMist. We did. Two days later we found out the culture was +. He had strep. I wonder how recovery would have been different if we didn't get that.

First, I think it's normal when you see odd behaviors surface to look if anything different can be causing. Either it be stress in the household, new school, etc. You're not the first to do it. I did the same. My son started a new school, had a birthday, and it was in 2009 when Hurricane Ike winds came through and put out the power in Cincinnati for a week. So, boy,was I able to find excuses. But the important thing now is that you know the real problem and you will fight PANDAS. As for the incident about his things being alive...I can see that happening in my household. Is that the only thing that has happened so far that set up a red flag for your other son(besides the blanket too)? It's hard. That little boy has been through a lot and as a parent you don't know which way to turn. Has he been sick? Does your PANDAS son show classic signs of strep when he's sick? What you can do look at this link. It's OCD as seen by PANDAS parents. Look at it and see if he is exhibiting anything else. Then keep an eye on him. If oddities keep popping up, I see no harm in taking him in for a strep test. That will ease your conscious as well. Signs of OCD in a young child http://www.latitudes.org/forums/index.php?...ic=6153&hl=

All 3 of my kids had H1N1. My PANDAS son was already recovered from his last strep triggered exacerbation at the time. About 5 days post 104+ fever, he had some PANDAS symptom appear, but thankfully nothing bad or long term.

This episode just ended. Here's the link if youd like to watch "The Vaccine War". http://www.pbs.org/wgbh/pages/frontline/vaccines/view/

I agree with everyone else about exposure. As for dd7 and her behavior after school, my son was like that. He didn't act up in the classroom, but once he got home, he was short fuse. We learned to give him an hour of deprogramming time where we just let him be, No questions about school, how he was, nothing, If he wanted to be alone in his room, we let him. Do you give your kids Omega 3's? That helps the brain and may also help with your son's handwriting and other school issues. If your kids can take Ibuprofen, it may be time to give that.