thereishope

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Are they giving it during school hours or are they giving it on school property after hours? Sicne my kids are in elementary, they give it after hours, but the middle and high school are when in sesssion. Our district does the mist If my district did it during school hours, I'd probably pull them out of school. But a whole week seems like a long time. That's a hard decision. As for being exposed to someone shedding the virus, well, honestly you have no idea how many people he's exposed to as a result of shedding anyway. I'm more concerned about an "oops" vaccination. I'm also disgusted about Flu Mist being given at grocery stores where people buy their food....

Let's add change toothpaste as well as toothbrush. No "community" rinse and spit cup for brushing teeth. Do not use drinking fountains. Teach daughters not to share lip gloss and makeup with friends.

I have so many family stories I can share. Not only with my child and PANDAS, but just what I experienced as a child with my dad's side of the family post divorce. Some families will use money, gifts, etc as a bargaining tool or as a sense of power. Your son is a strong person to write to them and ask. Family shouldn't have to ask, if they know the circumstances. I'm proud of him! Yes, I agree, it's an awful feeling to know that it may be money that stands in the way of a child getting better. It's sad that it's part of our messed up lives and society.

I missed the original post on acne, but often people will have a flare in acne when they are getting over a virus or infection. It's like a way toxins are leaving the system. Also, when people start antibiotics, like tetracycline,for severe acne, you have 3 months of a worsening of symptoms before you reap any benefits. So, if you break out when you start antibiotics, there is a connection.

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What was your child on when you had that good 4 days? If Azith has been the only antibiotic that has been given, you can consider trying a different one. Each child is different. Some also do well with Augmentin or even Omnicef or Keflex.

Like everyone else, I am so sorry. It's one of those posts that I don't know what I can say to make it better but I feel like I need to post something, even if it's just saying you're not alone.

What antibiotic was it? Healing cannot begin until whatever the infection is creating the autoimmune reaction is erradicated. These kids are just in too much of a fragile state to let nature take its course while you see there is a possible infection still there. I ask about the antibiotic because if it was strep, for example, each child seems to have their own "right antibiotic". Amoxicillin and penicillin work for for the minority of kids. Others have had sucess on Augmentin, Zithromax. Keflex, Omnicef. It's sad that's there's trial and error, but that is what PANDAS is right now. Here is alink about antibiotics and strep. Amoxicillin Failure in Strep http://www.entrepreneur.com/tradejournals/article/169459644.html Now, if the infection is erradicated, then recovery can slowly begin for some kids without remaining on an antibiotic, but the parent should see if the child has made improvements while on the antibiotic as one way of seeing if that infection may be gone. Not many do this since they choose to keep the child on antibiotics to help prevent reinfection and/or don't want to chance the infection may still be there. Some kids just fall dramatically back in progress the moment they are off antibiotics and some need to go onto to have IVIG. There is just no simple answer. Since your son has not made any noticeable improvements, I would try a different antibiotic rather than pulling him off of them completely. Buster did a flowchart for recommended testing. Perhaps this will help show some things you should test for, if not done already. PANDAS Flowchart http://www.latitudes.org/forums/index.php?showtopic=6688&hl= Strep is not the only infection that can cause this type of reaction, so other things should be ruled out as well. Son did have a tic that has gotten substantially better. How long did it take on abx to see a change? It seems we would have seen/heard some change(s) on a 30-day abx? Thank you for your input. I wish you the best.

Oh boy, I had a long reponse typed and lost it:( When you say "without treatment" do you mean no treatment to erradicate an active infection or do you mean no treatment once the infection is known to be gone? By what you listed, like the new rash, it sounds like there is still may be an infection.

I fully agree. When I asked my son's old ped about antibiotics and RF, the response was "but antibiotics would be hard on his little tummy". Um....what about his brain????????? I think some docs still have that notion that the kids will outgrow PANDAS so they don't need to treat it agressively and the fact that articles are still being written on websites saying the "simple" thing to do with a PANDAS child is a round of antibiotics to kill the strep. I still see articles being written like that. "The remedy is simple enough, a round of antibiotics". It drives me crazy to read that!......Obviously, that mindset needs to change

As for washing hair and baths, I think my son went 2 weeks once without bathing. Luckily, he has super short hair so it wasn't too obvious. Bathing for awhile was a 2 person job. They do sell water free shampoos and cleansing wipes for when she really needs it, but do continue to try to get her bathe. You never know when it will the time she is ready to do it. Also, Eucerin (not the lotion but the petroleum/mineral oil stuff) helped my son's bleeding hands. Lotion can cause a burning feeling and that's why they will freak out when you want to put stuff on them. Also, some may disagree with this, I did plant the idea of wiping his hands on his pants to "wipe off gerns and contamination" in order to try to limit the excessive hand washing. I saw this as a way for him to be able to endure school better since he couldn't continually go to the bathroom. Yes, I replaced one compulsion with another, but it kind of helped him function more and helped with the raw hands. He still did excessive hand washing, but not as much as before. Now, he does neither.

My son had strep a month after having his tonsils out. If a dr tells you a child cannot get strep without tonsils, find a new doctor. T and a is suppose to reduce the chances of getting strep, but it is not 100% effective, nothing is. On this forum, you have a mix of people. Those who children did fine with t and a and it did help reduce the number of infections. You then have those who continued to have chronic strep. And you have those who had an exacerbation shortly after surgery (possibly due to being exposed during surgery or through damaged tissue). Strep can also be in many more places than the throat. Ear infections, sinuses, gut, skin, anal and vaginal. You can also have strep throat with negative rapids, negative cultures, and titers that fall in normal range. It's a nasty, sneaky bacteria.

Did the doctor have an opinion on the amount of antibiotics given to the animals we then eat or the stance on prophylactic antibiotics being used for things like Rheumatic Fever? Or how vaccines can cause resistance. I may be wrong but isn't that the case with Prevnar and why they had to add more into that cocktail?

I'm sorry! Can he take Ibuprofen? If so, I suggest thinking about giving it to him a few days post fever. Some will see the PANDAS symptoms surface after the fever. As for the reoccurrance of illness, is he in a public school or private? If in private or preschool, consider requesting a classroom change or even possibly change schools. I really think part of my son's reocurring strep in preschool may be part to blame that the school didn't sanitize and clean enough. Or it takes one strep carrier in the class to cause problems. Now, with this fever, are you seeing PANDAS yet? If not, it could be viral. Still rule out strep, though, if concerned. But, again, some kids do have a ramping of PANDAS symptoms with viruses post fever. Keep us posted!

What antibiotics has Dan tried so far? You mentioned before that Dan developed symptoms after he entered your and Pixie's life and that leads to wonder if you have Lyme and if Lyme is actually contagious and you may have given it to Dan. What symptoms does Dan have that leads you to think that? And are you saying that Dan continuously tests positive on the rapid tests?

All vaccinations stimulate the immune system. With PANDAS kids, when the immune system is activated (even with things other than strep), it may cause an exacerbation. If your school does vaccinations during school hours...then pull your child out for the day so no "oops" vaccination occurs.

Nice response from the doctor! You may be right about some antibiotics going through breastmilk. I wish I could make it all better for you!

Geesh! I hope you get this all sorted out. Did the doc once put all your kids on antibiotics w/o testing just to make it easier? Would they do that again? Also, are you still nursing? I remember someone (either Pacific Mama or Lyme Mom) saying Lyme can be passed through breastmilk. You may want to research that more. As for you negative strep test, you were probably just tested too soon after finishing antibiotics. Please keep us updated!

A simple moment I will forever cherish is now being able to hug my son and stroke his hair while hugging him. That in itself is a reminder that he is well. I wasn't able to do that for quite awhile due to contamination, OCD, and sensory issues. Also, even now, when I find myself scratching my nose or cheek from an itch, I find myself automatically stopping and turning slightly towards him to ensure there is no reaction (past contamonation fears). When he goes about his conversation or business without hesitation even though I know for a fact he saw me, make me so darn happy! In my son's first exacerbation when contamination and germ fear was at a high, for some reason the park was "his" spot. He would even put his hands in the dirt there! I'd stand there just happy, knowing he will overcome this somehow. For some reason, that place was his fortress of solitude. We went to the park daily at that time for that reason. However, in exacerbation #2 and #3, the park didn't have it's magic charm:(

When I read your post title, I thought the $800K was for a few things. But only for that one thing? And in Africa? Isn't the NIH US money or is it common practice to use the US money given to the NIH to be used in other countries and they reason it's good to do that since in a round about way it will help the US? It's just a question, I really don't know.

Like everyone else has said, I'm sorry you're going through this! When you think back to when the ramping of symptoms started, can you think of anything that changed or can be seen as a possible trigger? How soon did she begin to decline after her last IVIG? Have you asked her school if strep has been in her room to their knowledge? Prayers being sent your way. Please keep us updated.