thereishope

I asked this question awhile ago on here. It makes you wonder, doesn't it? As for me...tonsilitis over and over as a child. The dr just gave penicillin right away w/o strep tests. I had some OCD as a child. I still can see some tendencies in myself. I had rages as a child. Sensory issues (sounds of lights in the stores drove me crazy, couldn't go to the movies). Other problems too. Autoimmune disorders, strep carriers, and OCD runs on my mother's side. I even look at how PANDAS kids are smart, good memories, etc. I am not saying I am super smart, but I do notice I have a very good memory that my husband hates:) Now that my child has PANDAS, I try to notice if I become more anxious, or freak out easier when someone is sick. But how can I tell? I mean, I'm a stay at home Mom. When someone is sick, obviously my stress will increase, but I think I do have a harder time sometimes at controlling it. Makes me wonder....

I found out about it through google alerts.

http://www.dariennewsonline.com/health/art...iety-411757.php Darien doctor gains national notoriety By Maggie Gordon, Mgordon@bcnnew.comPublished: 06:24 p.m., Friday, March 19, 2010

Welcome. Unfortunately, you have to look at PANDAS with the assumption that it will happen again.Not to drive yourself crazy but to keep your guard up. I mean, I suppose there's a chance it won't surface again, if he never contracts strep and a very long time goes without illness. But the odds are against that. That ear infection could have been caused by strep. No one knows that. Right now, I say go into preventive mode. Check every single person in your house for strep. This will help revent reinfection and help prevent backsliding from exposure. Even if people do not have symptoms, get them tested. If the rapid test comes back negative, make sure they send out a culture on everyone. Make sure you do basic cleaning in the house. Change toothbrushes, rinse and spit cups, etc. Contact the school, reschool, daycare, etc Tell them you need to be notified if strep hits the room. Also, discuss with your doctor about keeping him antibiotics in hopes of preventing a strep infection (prophylactic antibiotics). Finally, it's been what...almost 2 weeks? if you see a back slide occurring soon, don't hold off contacting the dr to switch antibiotics. What was your son put on? It has been written on here before that arond teh 2 week mark, parents see a backsliding of symptoms because the antibiotics start to not work. I am not saying this will happen, but if it does don't hold off too long.

Melanie, Don't throw in the towel! We all have moments when we start to second guess what we see in our child/children. I understand where you're coming from...meaning the IVIG may not be working so why bother. You're not bad for thinking that. I think it's a normal reaction. But you cannot think all hope is lost You know that the ideal thing is to try to get to someone like Dr K, try a higher dose of IVIG, keep fighting for Danny. So, the question becomes what is keeping you from that appt with Dr K? Is it the travel, is it fear that it wont work and then you will feel like you exhausted all avenues, is it the money? I know if it was my son, I'd be in such a hard spot. What do people do when they just don't have funds for IVIG and insurance won't conver it? People say "find a way". But, the reality is you can't always find a way. Talk to us. Maybe we can collectively figure something out. Remember you have all these people rooting for you and Danny. Don't give up!

Do you think he has spring allergies? At 4 years old, it could be the first year for him. My boys started experiencing spring allergies right around 4. My daughter, who will be 4 in June, I think is experiencing her first year of spring allergies this year. Not quite sure yet. Her eyes are glazed over, runny nose, etc. I may start her on allergy meds and see if it helps. Also, if he is sensitive to light, that could cause the eyes to "mist" over. Sensory problems are common in PANDAS kids and sensitivity to light wouldn't be a surprise.

The link to the fb page is already on his forum. I still need to post an update on that one. Right now, it's buried.

I agree with Kayanne. Look up SFMom's old topics and posts. She's the expert on that in this forum. If you search "Kawasaki" some things will pop up too. I saw that in your response and my eyes perked up a little. Your son isn't the only one on here who was diagnosed with that at some point. Also, at 165 pounds, the Ibuprofen can be given at adult dosages.

Fixit, To be honest, the fan page isn't as important as an actual vote when the time comes. So, don't worry about it. When the time comes, we will post a link to actual voting. Then, even you you don't feel comfortable going through the process of casting a vote, you can at least cut and paste the link and email it to people you know. Ultimately, EVERY VOTE WILL COUNT. So if you would do the voting every day, that is what is most important. As for the other organizations that were suggested, I know P.Mom answered that already, but we will revisit the idea with Diana when we have a link to actually vote.

Did you ask if she would at least increase it one time to try, maybe not increasing it every month? Maybe she'd agree to one time. Nancy just posted on here recently about increasing her daughter's IVIG dosage. Here's the link to the info she gave.... http://www.latitudes.org/forums/index.php?showtopic=7479

Hi. We just wanted to give an update on Pepsi Refresh Project P.A.N.D.A.S. We know some of you aren't facebookers out there, but we don't want you to be left behind. So, we now have a total of 333 fans on our page! This is remarkable. We not only have many PANDAS families, but we are getting the support of people without PANDAS kids as well. In order to keep the project fresh in people's mind and try to educate the people without a PANDAS child, we are doing occassional posts about PANDAS, PITAND, strep, etc. If you are a facebooker and you haven't already joined, please consider it. It will be a good way to stay in communication and learn if we get on the Pepsi page and, if so, when to vote. If you do not have a facebook account, you can still view the page. You just cannot join or comment without an account. April 1 will be the next time to try to get our submission in. We will let you know how that goes. And, don't worry, we will definitely post it here too! Please send good thoughts our way at midnight. That is when we will be at the computer trying to get in our submission. They only accept the first 1000! As a reminder, if we do win, the grant money would go to Dr Cunningham's research. The link to the Pepsi Refresh Project P.A.N.D.A.S. is http://www.facebook.com/pages/Pepsi-Refres...82.309749594..1 Thanks!

How is he doing now? He's on antibiotics right now in addition to monthly IVIG, correct?

How much does your son weigh? On this sentence... ...if your child goes into full remission with antibiotics, you may not feel the need to seek IVIG. If anything, it might be the reverse. If you don't see remission with antibiotics, you seek IVIG. So, like others suggested, once the doctor sees your child, evaluates the med history, a steroid burst might be suggested. Also, if you see improvement on antibiotics (not full remission immediately, but improvement) that also backs up the diagnosis. I see you've been on ACN for awhile. Have you heard of the Cunningham test/study?

This time of year doesn't help matters. With the seasons changing, there is so much illness our kids are exposed to. That can cause things to worsen as well. With my son, he would have time of dramatic setbacks, but they seemed to last only for about 3 days, then they would level off and improve.

Hm. The "one more time" is something my son would do. For him, that wasn't a tic. They have that "just right" feeling. You've probably had that before. You just feel like you need to do something, then the anxiety builds and you may feel like you'll explode if you don't do it. But, for them, it's 100 fold. With a tic, I don't think he'd be able to say he needed to do it "one more time". With a tic, I that's involuntary. As for hand washing and it not staying around. OCD can morph. Perhaps he replaced it with a different OCD tendency. That happens as well.Or, there is a chance it was sensory and feeling something on his hands made him feel awful. With that one, I'd ask what his reaction was to something being on his hands, what the anxiety was like, etc. My son had hand washing as OCD. The severity of the hand washing did vary and I was able to help him overcome it. But then he also graduated to just wiping hands on his pants after touching everything, just avoiding touching things, walking with closed fists. He also, even at 5 years old, learned to lie in order to wash his hands. He just said he needed to go to the bathroom to justify washing his hands.

I wouldn't think she sees patients, but if you have a specific question, you could try to contact her via email and perhaps you will get a response. Just remember that since she's not your child's doctor, she may be limited to what info she can give. I wouldn't think she can give actual medical advice.

I have a feeling if you look more into it, you may find some OCD too. Here is a link to some OCD tendencies that parents on this forum have seen. Sometimes a parent becomes so used to the habits they don't realize they are not within the norm or they od not realize what OCD can really look like. http://www.latitudes.org/forums/index.php?...ic=6153&hl= I don't know if anyone has suggested this, but some PANDAS kids will have an easing up of symptoms with Ibuprofen. Something to try.

I had a short conversation with a friend who is a pediatrician. I explained how my kids do not get symptoms of strep. This person quickly said that means they are carriers. But they are NOT carriers. So, do most doctors think no symptoms means carrier, therefore, no need for treatment. Or do doctors just not realize there are non-carriers out there that do not get symptoms of strep?

A few others on here have said subsequent steroid bursts weren't as effective. I really don't know why that would be the case. Perhaps someone else on here can explain it?

Welcome. I think you have an important piece to the puzzle...a positive strep test. We even say on here, sometimes, that you have that + strep test, don't bother with the titers. With some kids, they won't even have elevated titers even though they have strep! That just gives some doctors reason to question the possibility of PANDAS. So, upon hearing that her behaviors improved on antibiotics, then worsened off, will the doctor extend a prescription? What is taking right now? In case you haven't come across these great threads yet, they are packed with helpful information.... PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 It is also a good time to take in all family members to make they do not have strep. This will hopefully prevent reinfection of the possible PANDAS child and eliminate the child being exposed to strep (which can aggravate symptoms as well). I take all family members in every time strep is in the house. That is how I found out my 2 non-PANDAS kids do not get symptoms of strep either. If family member's rapid strep tests come back negative, make sure they send them out for a culture.

Taken from the FAQ sheet.. http://www.latitudes.org/forums/index.php?showtopic=6266 This is a research study. However, it has lost funding and therefore there is fee to run the test. Last I heard it was $400. The ideal is to have this test done during an exacerbation, prior to a steroid burst to get the most accurate results. Here is her email if you would like to request a kit to be sent to you for the test. You would have to send the blood back to her to have the test run in her lab. She would then forward you the results. Madeleine-Cunningham@ouhsc.edu

First, I'll say my son has never been on SSRI's so I am not speaking from first hand experience. Even when my son was bad, I just couldn't go down that route. But, there are some kids on here who do stay on a SSRI if the parent thinks it is helping. This forum isn't full force "Get your child off all psych meds asap". We just say be careful, watch dosing, and trust your instinct. I think a good amount of psychiatrists take the stance that if they don't see improvement, they up the dose, the change the med, they add another one on. But with some PANDAS kids, they may need a lower dose than the norm or it just isn't needed and it's actually an adverse reaction. As with all medical aspects of PANDAS, educate yourself, speak up to the doctor if you have concerns, and do trust that inner voice. If anyone decided to take their child off a SSRI, discuss it with your doctor. Even if they want your child to stay on, it is ultimately the parent's decision and you can ask them how to wean your child off of them. Just don't stop all meds. Often, they need to be weaned. If your child is not already on a SSRI and you are thinking of adding that in, in my personal opinion, try different antibiotics first, see if there's anything else you can try before you can go down that route. I don't judge those who have their child who is very bad off on SSRI's but I cannot advocate them either.

With all 3 of my son's strep triggered exacerbations, I can tell you day and even time it surfaced. With viral and allergy triggered ones, it was more blurred because the severity isn't as bad with those.

If you go to this website, you can download the webinar... http://njcts.org/wordpress/webinars/can-st...is-pandas-real/

Here were responses to that article/ q and a... http://www.latitudes.org/forums/index.php?showtopic=7444