thereishope

I'm glad you are seeing improvement. This was one of my most favorite parts to read in your post.... Keep us posted.

I'm guessing by the size of the conference it would be a presentation. I don't know if anyone is available afterwards. But, then, I've never been to one so I really have no idea.

Welcome. As you probably know, the most important thing is KNOW you're child will get better. That is the driving force in all of this. The journey may be hard, but it sure is worth it. My son is doing well right now. I still have moments when I take a step back and just realize what he has accomplished. I smile and I still shed tears. I am so thankful he has come back to me. When you deal with PANDAS, the parent becomes emotionally and psychologically scarred. Many have decribed it as Post Traumatic Stress Disorder. It covers it perfectly. Know it is okay to have moments of desperation and moments when you just feel like throwing in the towel. Just make you always pick yourself up and continue on. My life has changed forever because of what my son went through. And I hope and pray every day it will not come back. Don't ever hesitate asking a question. Everyone here is very open about their experiences. That's the only way we find out how to help and realize similarities.We are all here to learn from each other. Welcome to the club!

My son hasn't taken Augmentin XR so someone else would be better at answering questions about it. here's a good thread about Augmentin XR http://www.latitudes.org/forums/index.php?...hl=augmentin+xr It seems a good amount of kids on this forum are on the antibiotic. If you have specific questions about it, a new thread devoted to it would probably get more answers.

I'm going back and forth here if I should post anything. So I will post a reminder that every child is different. Every appointment is probably handled different. I have not seen any of the experts so I do not have ties to any of them or any personal feelings towards any of them. With wornoutmom/dads child, it could very well be that if they went back to Dr L's office a month from now, the "story" would be different. It is sometimes a matter of how a child is presented and how a doctor views the information. Two of the experts that are listed on here have given conflicting info to different parents.Opinions on this disorder, how it should be dx, how it should be treated, and various details on what a PANDAS parent should do for their child doesn't really seem to have consistency right now (even among some of the experts). I am so happy Dr L was amazing to a good number of families, but as it was stated, she is human. And there's always a chance this child's case may not have been handled as beautifully as others. The best thing for this family to do is to pick themself up and go on. get the second opinion they plan to do and maybe once things settle, try to have both dcotors conference about their child. As for EAMom and Buster...I understand why they choose not to publicly post their doctos's info. Let's face it, parents on here put them on a pedastal. If they posted their docs' info, people would be booking flights instantly to see their doctor and requesting the "Buster/EAMom child protocal". Perhaps the doctor specificly asked them not to post his/her name. So I wouldn't hold that against them. Now, personally, I don't know I how I feel about giving the name to locals but not everyone. Maybe that should be rethought. All or none. But I understand not posting publicly.

I'm sorry. First,it sounds like a lot at once so I would take my son to the ped for a strep test. Is she on antibiotics right now? Does she have signs of a virus, allergies, etc? If it was any residual OCD, it can spiral. I'm not saying to ignore everything that happened, but when OCD wants the person to do something, it causes so much anxiety when that need cannot be fulfilled (sleeping with you). It's an extinction burst. The word "burst" explains it. They burst with anxiety. Then the OCD started to freak out that it was going to lose so it started slamming her with more thoughts and eventually sent her overboard. OCD needs to be viewed as a physical entity. It is such a controlling thing!

How long has he been at a plateau? Is there any backsliding lasting for a few days?Do you chart or keep track of his behaviors that you can read through them and actually realize he still shedding some more subtle symptoms? Sometimes you don't realize a symptom is gone until you rememebr they had it.

My son was 5 when had explosive rages that included hitting me, kicking me, ripping my clothes, saying horrible things a 5 year old should not even think to say. This along with OCD, ODD, sensory, etc, etc. When my son is in an exacerbation and not yet in recovery mode, he is a different child, he is not a normal child, he is dealt with differently. He did not have reasoning. A lot he did was done on animal instinct.I did not discipline him. You cannot punish a child who does not have control over what they are doing. What he needed was love, patience, and respect. I would stand ther in tears tackling him to the floor bear hugging him, making sure his feet could not start going crazy kicking. I sat there rocking him, singing "mommy loves ___". Eventually, he'd calm down. That was done, we would go with life....until it happened again. when he'd get like that, I'd close the windows (it was warmer months), I'd tell siblings to leave the room. He wasn't a show for others to watch. he was my son and I gave him as much respect as I could. One of the most memorable turning points I have is when he was about to meltdown in rage. I picked him up, he was about to hit me and in mid air he lowered his hand. Without my prompting or begging. It was then I knew I was going to get him back. Now my son is doing well. he is back to being a normal child. I now discipline (even though I do find this hard since I am scared if he gets sick again I will have bad memories of not being nice to him), I can give him ultimatums and he responds to them, he understand right from wrong again, life is back to how it should be. How long has he been on abx for that infection? How long has it been since that infection?

You can email her requesting one. Her email appears on the page.

Welcome. I am so happy you are catching this rather quickly. have all family members been checked for strep to avoid reinfection? Some PANDAS kids will react to exposure only too. If you haven't done this yet, it needs to be done. As for the food reference, I totally get that. For quite awhile I wasn't allowed to touch any of his food. He had to prepare evreything, get is own cup, plate, utensils. It was a big day when he let me help him. Have you notified the day care about strep and his autoimmune disorder? One of my strong theories is my son kept getting reinfected at his preschool.

The diarrhea could be a stomach bug. That would also explain why he's been having trouble this week. I know there's natural anti-inflammatories, but I can't think of them off hand.

Welcome. When was the last time you had a rapid and culture done on him? If it's been awhile, do that too. If either come back +, it's good to have that in his records and you will get antibiotics faster and easier and don't forget to do simple things like changing a toothbrush after being on abx for 24 hours. What antibiotic did he improve on? Best of luck at the doctor's!

For some ENT's it is standard to do pre-surgery abx for something like 3-5 days prior. They want to try to rid any infection that may be hiding before they do surgery. Also, for some ENT's it is standard to do abx a few days post surgery to make sure no infection sets in where the surgery was. Now, the type of antibiotic may not be what you want. For my ENT, it was amoxicillan. I got the script for pre-surgery abx the day I was at the ENT making the appt for surgery. I was told to hold onto it and when to fill it. I would call and discuss it with him.

No offense taken:) I know on the bottle there is a warning about stomach problems and bleeding, but I didn't know the specifics. Now I know! That's probably why some kids cannot take Ibuprofen at all. I've heard that from a couple parents.

You're not butting in! If you have info on anything, it's good to share. That's how we learn from each other. My son, when taken every 6 hours, it was only for a week. When I did once a day, that maybe lasted a couple weeks. Now, that he's recovered, if I see questionable behavior surfacing I may only give it for a day until I can see if there's reason for alarm. I know some parents on here give it daily for longer periods of time. Perhaps they will chime in on whether any testing is done to ensure no problems are occurring from daily use. I, admit, I don't think I'd feel comfortable giving my son it daily indefinitely. That's just me. Does your GP suggest never giving children Ibuprofen?

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I think if you take Ibuprofen and a steroid at the same time there's a chance it may affect the lining. I am not sure on the specifics. If your child gets queasy after taking it, give milk prior to the Ibuprofen to coat the stomach. As for frequency, I have given it full dose every 6 hours (except while sleeping) to my son for a week when he wasn't doing well. After that, I've tried to limit how often I give it. Sometimes even once a day is enough to ease his PANDAS symptoms all day. I've read other parents have experienced good results with only one dose a day.I say try to give the minimum. For my son when he was needing it every 6 hours, it took 1/2 hour to get in his system and began wearing off at the 5 hour mark. If you don't see the PANDAS symptoms creeping back at the 6 hour mark, then hold off and see how long the easing of symptoms last. I would say, don't give it if they don't need it. Right now my son doesn't need Ibuprofen. The only way you'll know if they can be fine without it is by not giving it and see how they do. If I see any questionable behavior surfacing, I will still give him a dose. For me, I would think it's easier to hold off bad inflammation before it occurs rather than trying to bring down what is already there. I have heard some kids cannot take Ibuprofen. I don't know what happens to them and the reason they cannot tolerate it.

Thanks for posting this! This is one of those things that when I look at the cost vs what you get it, it's worth it. But then when I look at the cost along with hotel, I just don't think it's gonna happen. I have family in Chgo but on the SW side, so it would be a long commute every day so I'd have to do hotel. Even just the $300 for the conference...I wonder how much the dvd will cost. I also forgot I need to cough up preschool registration and tuition for my daughter soon. I need to plant a money tree. Are you going, Mom?

First, this is a great thread about the Cunningham test http://www.latitudes.org/forums/index.php?...gham+blood+test In that thread a different cost is cited. it is now $400 and can deducted as a donation. Insurance will not cover it. Here is a link to Dr Cunningham http://www.oumedicine.com/body.cfm?id=4290&oTopID=4290 can you please post the link to order this test for dr.Cuningham Vickie? thank you so much

Well, if you're on Zith now, you could get a false negative. You can still get it done, and you may get a +, but be prepared for a negative. Some PANDAS kdis have tested + while on abx, so it is worth doing for them. But if it comes back negative, remind your doctor they are on antibiotics at time of testing so the possibility of a false negative is there. For further reference (and let's hope you never need to refer to this cause that means someone may be sick), still do the rapid, then get a culture if that comes back negative, then do blood tests if the culture comes back negative. I say still do rapids because you will get meds faster if it comes back +. Some doctors (like mine) will not give meds unless they see a +. Waiting 2 days for the culture to come back makes a big difference to a PANDAS child.

That's what my son takes. For some reason Target sells them with sugar on them, Walmart does not. Of course my son doesn't want the sugar coating and Walmart is further away for me.

The doctor saying there's no ned for a culture is BS. I'm sorry, but you need a new doctor. I take this personally. My PANDAS son's first exacerbation...he was crazy over night. no signs of strep. The dr did a rapid because she once read about PANDAS and she had no other answers for us except for a psychiatrist eval.. rapid was negative. 2 days later I got a phone call, the culture they did was positive. He had strep. If that culture was never run...God I can't think where we would be right now. My husband. had a sore throat. being that we now knew our son had PANDAS, he went for a strep test. rapid came back negative., They told him there' sno need for a culture. He doesn't have strep. he insisted on the culture. Guess what...came back postive! He had strep. At least you got a prescription for Zith.

Here's a link for a dosing chart... http://www.motrin.ca/eng/child/product/childs.html Also, some Motrin chewables and pills were recalled recently. Here's the link to the list of recalls... http://www.mcneilproductrecall.com/

My bottle says for 66 pounds, you can give 250mg. Equals 2 1/2 teaspoons for the liquid.

I just wanted to put this in a thread for some of the new people since it seems the info on Ibuprofen is falling through the cracks a little. Some kids have seen a temp easing of PANDAS symptoms while taking Ibuprofen (Motrin, Advil). This is not to replace antibiotics or to replace trying to find a more permanent solution. If your child does not see an easing of symptoms from Ibuprofen, it does NOT rule out PANDAS. However, if your child PANDAS symptoms do dramatically decrease it can be an indicator of inflammation. If Ibuprofen did not work before, it is worth revisting. One time it did not work for my son. Another time (at a different point in recovery) it did. If your child will only take liquid meds, Motrin does offer a dye free one and some Targets carry a dye free generic. Ibuprofen is a NSAID Non Steroidal Anti Inflammatory Drug. It is usually advised not to take Ibuprofen with a streoid since it can take a toll on the stomach when taking both at the same time. Even though Aleve is also a NSAID, it is not an Ibuprofen, and parents have not cited as successful results with the naproxen sodium NSAID. As for dosing, it does appear on the back on the children's bottles. If you'd like to ask , please post and hopefully someone has a child similar in weight. From the PANDAS FAQ page... http://www.latitudes.org/forums/index.php?showtopic=6266